Adrenal Insufficiency & Shoulder Surgery

TW: surgery, hospital, graphic detail, medical procedure, hospital, adrenal crisis

I had surgery on my shoulder a couple of weeks ago to stabilise the joint to (hopefully) stop it from dislocating with simple moments. The proceeded itself is pretty common and routine but because of my adrenal insufficiency, I’m a high risk when it comes to surgery. I’ve since found out that orthopaedic people call it a “major trauma” surgery when referring to it, so it’s probably a good thing I didn’t know that when I was deciding whether or not to have the operation!

I’m pretty good at reading between the lines of doctors talk, working out what they actually mean and whether or not they’re worried. But I had 6 days hanging out on an orthopaedic ward recovering where I got to know the ins and outs a bit more and figured out that my surgical team were more worried about me than they let on, and they had a lot of things going on in the background “just in case”. The fact I didn’t clock any of it until later is bloody impressive in itself!

After I kept dislocating my shoulder, it got to the point where it was a case of I’d either dislocate it randomly and might die from an adrenal crisis or I have an operation and might die from an adrenal crisis. A planned, calculated risk in surgery was better than hoping it didn’t happen by chance when I was at home myself, so I decided to have the op. I’d had a very comprehensive pre-op where we outlined the things to minimise the risk of crisis which included having the consultant surgeon and anaesthetist with me rather than other doctors, putting in place nerve blocks and additional pain relief to dampen any stress response, and starting on a 24 hour steroid infusion and being admitted to the ward for at least this time. Then I got told I’d have at least a year on the waiting list.

About a month later, I was having the op! I’d already worked out that someone somewhere must’ve moved mountains to get me this op date brought forward by a year, but my detective work on the ward after really highlighted this to me. From what I can gather, I was always classed as a trauma surgery rather than an elective one (which is what I actually was) because of the way they ring fenced off everyone for elective surgery except for me. People kept getting confused as to how I knew I was going to have the op on the day I did, because everyone else on my ward had had an accident and then needed emergency surgery. So it was almost like my team were the on call trauma team but already blocked out just for me, probably because of the specific people I needed to have but also because I also had *a lot* more people in with me than other people. A student nurse told me they’d been cancelling elective ops all over the place because they didn’t have beds, traumas kept coming in, they didn’t have the staff… but mine was always going to happen that day, no matter what.

I didn’t actually see my entire team, which I think they did on purpose so as not to stress me out. I thought it was a bit odd that I had 3 anaesthetists (consultant, a core trainee, and a reg) come see me before I went down to theatre, but I also get used as a teaching case a lot so I thought I’d only end up with the consultant in the operating room. He decided that he was going to keep me on bed rest for a minimum of 48 hours and keep me in “recovery for an extended period until he was happy”, which I was fine with because it just seemed like he was being over cautious. But then as we were going through the last details and I was telling him about how my blood pressure goes up in crisis, not down, the consultant got a bit worried and said how he wanted to put a needle into my artery so he could constantly monitor my blood pressure rather than waiting for a reading but “how there’s a risk of maybe losing your hand if we do that” which was a bit freaky to hear! Then the reg came to get me for surgery and said something like “there’s a lot of people in the room, don’t be worried about that” which, combined with a comment of “goodness me, you don’t need 3 of us in there with you, just 1 maybe 2 at a push” to another patient on the ward later in the week kind of confirmed that I was having all the bells and whistles for my surgery. I just didn’t realise until much later.

My anaesthetists explained that they could do things like putting the nerve blocks in when I was asleep, which was easier for everyone but they wanted to keep me awake for it so they could guarantee that the block was working to its maximum capacity by making me do movements which would normally cause me pain. That way, my body would have a lesser stress response to the surgery than if they did the block only partially successfully. This sounded like a really good plan but did involve me having to have a needle poked into my neck at a very odd angle with 2 people holding me down so I didn’t accidentally move and paralyse myself. The most off putting thing was being able to see the ultrasound monitor showing me the needle going in, the core trainee doing it was actually really good so it was pretty painless!

The anaesthetic team were really good at explaining things and keeping me calm. Every time someone passed something over my head, they let me know. If someone was going to talk directly to me, they put their head in my eye line. Simple things but it made a difference. The humoured me when I checked a million times that I’d definitely had my IV steroids and double checked the consultant was staying with me throughout (that’s when I realised I was having all 3 of them). They kept talking to me calmly even though it took a long time to knock me out. I’m not sure what I was expecting but I assumed that you’d count backwards from 10 and be asleep fast, drifting off like they always do on tv. To me it felt like I was fully with it one second and then just asleep the next.

Then the weird bit- I obviously got moved from the anaesthetic room, to the theatre, got intubated, had my surgery, got my gown changed and had a sling fitted and then put on a real hospital bed, moved into recovery and stayed there for a few hours all before waking up. How weird is it that all that happens while you’re completely out of it?! Judging by where my scar is, my boobs and chest were completely on display for all of it! It’s just a weird thought all that happens and you have no recollection of it.

I got taken down to theatre before 9am, and they maybe spent an hour sorting the anaesthetic side out. But it was after 12 when I was moved to recovery because my mum rang before 12 for an update. The surgery was only supposed to take an hour so not sure why it took longer but it did. Then I didn’t come round until about half 1 because I’d not been awake that long before a nurse appeared with my phone alarm going off for 2pm tablet times. I thought I’d woken up quite quickly but I can’t have done. The first thing I said though was “you know I have adrenal Insufficiency, right?!” and once I was happy the nurse knew that, I started asking if I had my steroid infusion set up. She thought I was a bit confused to start off with but still went and got the consultant to come out of his surgery at the earliest point he could to sort it out. He said he was going to start it at 6pm because “the other steroids from surgery should cover me” but I said it needed to be on straight away (because the pump runs at 200mg/24 hours which would work out as 50mg IV bolus every 6 hours, which is an update on the “old” guidelines which were 100mg IV bolus every 6 hours. So less steroid but better coverage). To his credit, he said “I need to update my clinical knowledge”, found my chart and spent about half an hour writing up my detailed steroid plan for the next 3 days sat next to my bedside.

He went away and pretty much as soon as he’d vanished, the core trainee walked past with another patient, literally pushed the bed into the bay, left his colleague talking to his patient and came immediately over to me to check I was ok once he’d seen I was awake. I thought it a bit odd at the time because he essentially abandoned his patient, but it was one of the many things that have made me realise that everyone on my team was taking me very seriously and checking up on me a lot. He looked relieved more than anything. The consultant anaesthetist’s parting comment was that he’d ring the ward the next day on his day off (Saturday) once I’d finished the infusion to check how I was and weigh in on any further plans (he did for the next 3 days).

I had the nurse in charge sat with me until I left recovery at about 3.30 ish. The consultant said he wanted me to stay there longer but I actually felt really good! I wasn’t in pain, I’d had a really good sleep and a bunch of steroids. I felt better than I did on a normal day! My obs were all good except my o2 sats were slightly low so I was put on oxygen for a few days. I got moved up to the ward in time for visiting and teatime.

I’d been warned that I was to keep on top of pain killers because as soon as my nerve block wore off later in the evening, I’d really be able to tell I’d had a major operation. Just before my parents left, my cortisol pump kept alarming because of high pressure so someone had to come and silence it. I’ve had pumps before and usually when they do that it’s because you’ve bent your arm or lying on the line or something and the infusion isn’t going through so I double checked that it was actually working still. I felt “a bit weird” which was mostly why I checked but I also put it down to just coming out of anaesthesia.

Now we know that was the start of my pump not working properly. Part way through the night, I was in a lot of pain. I knew my night nurse was all clued up on my AI because she’d made a point of bringing her team to see me, pointing out my emergency injection kit on my table and saying “if we need it, we do it first, sort out paperwork later”. But pain in itself isn’t a reason to do the injection. Adrenal crisis pain is different though. I could feel exactly where the screws and plate were in my massively swollen arm, I could probably have described which muscles and tendons got moved around. It’s like a fine map type of pain. I said “I’ve got my adrenal crisis feeling” to my excellent nurse and she jumped on it straight away. I said I wasn’t sure if it was just a response to drugs and anaesthetic so she asked me if I wanted my injection and what I wanted to do and I said monitor my blood pressure for 10 minutes. We both watched it steadily creeping down (textbook adrenal crisis for change), then I really did get my crisis gut feeling so she immediately did my injection and things started to improve. She’d spent a lot of time trying to persuade my bay mates to not just have every pain medication on their charts straight away, to wait and see what worked, but she threw the whole lot at me in one go because she really understood that getting on top of the pain fast was important.

But the pump kept alarming. And after trying numerous cannula, positions, not moving, changing the batteries, getting the ITU cannula guy down, we concluded that the pump was broken and I’d need a new one from wherever keeps these special types of pumps once the department opened during the day. Which meant someone had to basically sit with me all night and manually restart it every 10 minutes. I was also scared to sleep and not wake up so my nurse stayed with me most of the time because she could see how anxious I was.

The pump got fixed pretty soon that day but it did mean I’d had an adrenal crisis and had missed getting the optimal amount of steroids at the optimum time. Looking back on it now, I definitely felt rough. But I don’t think I realised how poorly I actually was until much later. Things like I used bed pans, let nurses manoeuvre me around naked and wash me, ate my dinner while lying down, only managed to get underwear on after 3 days, didn’t remotely clean my teeth, stayed on oxygen… these are all things that I’ve *never* had to do or been willing to let other people do for me in hospital before, even though I’d been in hospital for way more physically disabling things and what I’d consider to be more poorly. The biggest one for me was that every time I needed a bed pan (which was a lot!), I’d produce so much urine because of my hormone disorders that I’d basically wet the bed and they’d have to change me and my bed every time until one of the healthcares worked out a system involving careful placement of pads and continence mats, which then got discussed in handover. How embarrassing is that?! But I didn’t care and I didn’t even want to try to find a solution. That’s how poorly I was.

Obviously because I was on an orthopaedic ward, I got reviewed by the orthopaedic reg, who said I was doing well (which I was orthopaedic wise) and that I could stop my infusion when it finished at 2pm. I wasn’t happy with this because that plan was written with me being well at the end of it in mind. But I’d had an adrenal crisis and missed out on at least 12 hours of the pump not working. The reg was a bit patronising and told me I would be fine but equally must’ve thought she should pass what I said on up because she came back with her tail between her legs and said that the medical reg and the anaesthetist had both said that “adrenal patients tend to know what they need so if I’d said repeat the infusion, then they would”. I wanted 12 hours, they gave me 24, no questions asked.

It got a bit confusing chart wise after that because I was talking about double and triple my (baseline) oral dose of Prednisolone, but when the anaesthetist had written up my chart in recovery, he’d already written it as double/triple that. But the next person to look at my chart didn’t know that, so they then tried to double or triple my already double or tripled chart (if that makes sense!). It would have been fine had the infusion worked, but because I repeated the day basically, they should’ve moved my entire chart back a day, but what they actually did was give me both pred and IV HC at the same time for one day, which meant when I went down to my double pred getting ready for discharge, I hadn’t had the middle stage so it was a massive drop between the two and made me have another mini crisis. I mostly knew this because I started crying a lot which isn’t something I do even in hospital! Then other things like my BP and oxygen and blood sugars went a bit skewed. My PTSD/hyper vigilance/people are trying to kill me panic set in but the nurses were great at realising I wasn’t “just” having a panic attack, took me seriously and went to ask the medical reg who slowed down the taper a bit more and put be back on IVs for 24 hours until they could eventually hunt down an endocrinologist in the north east of England to give them better advice.

I had the same night nurse as the first night for 3 nights and a really good day nurse for a few days, handing over to each other and it was honestly like the dream team. I’ve never felt so safe in hospital. There was also a really good orthopaedic Advanced Nurse Practitioner who could have turfed me out to a medical ward because my shoulder was fine, but he was determined to make sure I got home as safely as possible, not just quickly. Considering I was there for 6 days, I only had 1 blip with the steroids, when someone refused to give me them and I had to argue a bit. But I knew it would get sorted fast once this ANP came back on shift and it did. I was so impressed with how they handled everything to do with me. I really did have the VIP treatment this week.

My orthopaedic surgeon came to follow up on me and had said how he’s glad we’d made the choice to go with the major surgery rather than keyhole because when he’d opened me up he could see I’d lost a lot of bone from the front from dislocating it so many times and because of my osteoporosis. It meant he’d had to add in an extra bridge or something to make sure the screws were as tight as he could get them so I’d have to be especially careful protecting the joint for the next few months and we could work on range of movement maybe in 6 months. But the thing that surprised me was he’d seen on my chart I’d had an adrenal crisis and that was mostly what prompted him to come see me as well as sending his junior doctor. He wanted to make sure I was ok too and said “your priorities are: 1) adrenal Insuffiency. Always. I took extra infection measures with antibiotics 2) protect the joint 3) range of movement”. I’m just not used to people caring about me as an entire person rather than just their individual specialities!

Hands down, that was the best hospital experience I’ve ever had. And I can see how all of these people’s hard work and planning and communication really paid off and ultimately kept me from being in ITU even with adrenal crises. One of the few things we hadn’t planned for was “what if the pump breaks” but everyone knew what they were doing and fixed the problem without a fuss. It’s massively restored my faith in medics and I’m so grateful for everyone doing everything they did for me in such a way that I didn’t even notice how much they’d done until I was eavesdropping on the morning I was getting discharged.

For now, I’m not going out much and doing a lot of snoozing. I’m in pain but it’s not agony and I can get myself dressed slowly if I’ve got big enough clothes I can pull around one handed. Pjs mostly! I had a check up where most of the clips were removed except for 3 which are at an awkward angle under my arm, so the wound keeps bleeding a bit. Another week without washing should hopefully resolve that though! Overall, everyone’s pleased with how well things are healing and my alert dog, Hamish, has been doing a fab job at helping me work out how to dose my steroids (more on him later 🙂 ) Fingers crossed things still keep going well!

I’m anxious about surgery

TW: surgery, death, dying, hospital

I’ve got my operation on my shoulder later this week, to stabilise it from dislocating randomly. The last time it did it, I scratched my head while lying in bed and it popped out. I’ve been avoiding surgery like the plague (my foot also could do with a repair) because my adrenal insufficiency and other health conditions put me at high risk in general, but also in danger of having an adrenal crisis. But dislocating my shoulder also puts me in adrenal crisis so it’s now been decided that the chance of me dying from not having the op is higher than if we take a planned risk and have the surgery. Added to that, both my shoulder and my health are only going to get worse, so I need to have it now while there’s still some chance of recovery afterwards.

But I’m anxious. And I currently can’t sleep so here’s a blog post 😉 I’m not anxious to the point where it feels like all the alarms are going off on my dashboard, but I’m not asleep so I know I’m anxious.

I have a big issue around sleep or being unconscious. Before I got diagnosed, I’d feel so awful that my body would wake me up every 40 minutes with adrenaline because that was what it needed to do to keep me alive. Then I started treatment and my subconscious kept waking me up to check I was still alive out of habit. Even as a child, decades before I was diagnosed with anything, I used to wake up feeling sick and like I’d been electrocuted so my brain decided that if I just didn’t go to sleep, I wouldn’t wake up feeling like that. Which is true, but it also added to the problem- I was waking up feeling ill because I was so sleep deprived.

I have an even bigger issue about being unconscious. I had an arthroscopy on my knee about 15 years ago and I said at the time I didn’t want to have a general anaesthetic because I didn’t like the idea of being unconscious. Which leads me to my next problem- whenever I have had anaesthetic it hasn’t really worked so I’ve still felt pain. In my knee op, they came and gave me a general anaesthetic in the end and whenever I’ve had things like teeth taken out or fillings or colonoscopies with sedation, I’ve always felt pain. I just assumed everyone did until i changed dentist and he said he could give me more if it didn’t work. What a difference that made!

So already, before you add in the scariness of having adrenal Insufficiency, I would already have more anxiety than the average person because of my experiences under anaesthesia in the past.

Adrenal insufficiency makes it a million times worse. Cutting into your body and screwing things to bones is a massive stress on the body and a normal human would be making a ton of cortisol. If a normal person didn’t have anaesthetic, their bodies wouldn’t necessarily be able to mount a big enough cortisol response, they’d go into shock/have an adrenal crisis and then (maybe) die. Even with anaesthetic, my body can’t make a suitable amount of cortisol so it has to be replaced by the anaesthetist in the form of steroids. There are surgical guidelines for this but they’re written for the average person with adrenal Insufficiency. So some people will need more and some people need less and it’s down to that one doctor monitoring you while you’re unconscious to get it right, without any concrete way of knowing. It’s a bit like saying to a six foot, broad shouldered rugby player that they’re going to have the same appetite as a 8 year old. They *might* eat the same if you’ve got a particularly famished 8 year old but chances are they won’t. The rugby player will probably survive though, so long as he hasn’t had to play back to back matches for days on end, then he might faint from low blood sugar. But it’s fine, the coach can give him a banana which fixes the blood sugar but turns out he was allergic to bananas so then he went into anaphylaxis, had a heart attack and died. If the coach had known about his banana allergy and if the player had known he needed to ration his food ahead of the matches then it probably would have been fine. But all those things came together in a chain reaction and killed him.

That escalated quickly! But that’s the point I’m making about why I’m anxious. Everyone on my surgical team has been really, really good so far but they only know what I’ve told them and how do I know I’ve told them the right things? They don’t live with it every day and I’m not going to be conscious to be able to say “hey I think I need more steroids”. I haven’t met the anaesthetist but I’m supposed to trust him to make all the right judgement calls even though the first time he’ll talk to me will probably be about 10 minutes before. And if I’m stressed when I’m conscious then my subconscious is going to be even more stressed out when I’m under anaesthetic. I can’t do anything about my subconscious. And helpfully, a stressed out subconscious is likely to bring on an adrenal crisis too!

Plus there’s a whole other set of consequences and cortisol requirements to do with giving adrenaline and drugs to maintain blood pressure. It’s very sciencey and makes my brain hurt but I’m sure you’ve got the gist by now- anything I get given will have a reactive response to how much cortisol I’ll need.

Just because I survive the operation doesn’t mean we’re out of the woods. Adrenal Insufficiency has this knack of making you think you’re fine and then hitting you hard. Normally in the middle of the night, when your cortisol level is at its lowest. And I already said I wake up feeling terrible on a good day, never mind after surgery. Everything always hits me really hard on the 3rd day after any stresses or changes to my meds. But there’s also a set of stages to negotiate even before I get to the dreaded 3rd day- the nerve block wearing off in the evening, going on to IM or IVs every 6 hours rather than a continuous infusion, getting back onto oral steroids, getting back onto oral pain meds. Every single one of those steps will have the initial “shock” of it making me feel awful, but then also a 3rd day response too. If you’re good at maths, you can tell that some of the 3rd days will also be the start of a new step, so it’s like a double stress.

The final layer of my stress/anxiety about this op is that people regularly refuse to give me steroids because they don’t understand Ai. They hardly ever get the time sensitive nature of giving them either- “just” 5 or 10 minutes late can mean life and death depending on what else is going on with my body, never mind hours like they often leave it. I usually threaten to do my own injection as a way to get people to listen but I can’t physically do my injection with one arm. Because I’m constantly clock watching, making sure people bring me my drugs, I don’t want to fall asleep in case I miss my alarm or the nurse decides I’m asleep so will come back later. Not sleeping slows down my recovery and means I’m more likely to have an adrenal crisis… and the cycle begins again. It’s not as bad if I’m on oral meds because I can just take my own from my hidden stashes, but I can’t do the IV ones with only one arm.

I’m super organised and have done everything practical in my power to try to alleviate my anxiety around it. If something goes wrong (*touch wood it won’t), it’s not because I’ve not covered all my bases. I used to get really obsessive about things, checking things a lot, kind of bargaining by saying “if I do X properly then Y will be fine” but I did a lot of work with a counsellor on it and it’s fractionally better. I’ve not quite got to that stage yet, but I’ve already set myself deadlines like “I need to finish this sewing blanket before Thursday because…” which I know I’ll obsess about if I don’t manage to finish it.

I’ve got a killer week this week with a crazy amount of appointments so I’m just taking it one step at a time right now. I think it worse knowing when I might be ill in advance, even if it does give me the chance to make plans!

I’m having shoulder surgery in less than a month

TW: surgery, hospital, death, medical PTSD

About a month ago, my orthopaedic consultant put me on the waiting list to have surgery to stabilise my shoulder from repeated dislocations. I was told the waiting list was about a year long. Great! That’s enough time to:

⁃ Get my assistance dog to be solid on skills he can already do, like picking things up from the floor, opening and closing doors, taking things to people and retrieving some things like my phone and pills

⁃ Teach my assistance dog personal care skills like taking cardigans and jumpers off

⁃ Complete the building work being done to my bedroom. At the moment it’s not very safe or easy for me to do things like getting out of bed easily, getting clothes out. There’s also nowhere sensible for my assistance dog to sleep- he currently sleeps right in the middle of the floor so I trip over him when I get out of bed

⁃ Taper down my steroids a bit more. The lower the dose I am, the quicker my body will heal after an operation. Plus it means if I need to be on a triple dose after the op, I can, because I’ve got somewhere to go

⁃ Taper down my pain killers as much as possible. The same as being on a low dose of steroids, if I’m on fewer pain killers, I can take more after the op. I’ve got more options.

⁃ Lose some more weight.

⁃ Get my body as strong as possible. I’ve been going to an exercise class specially designed for people like me who are at risks of falls for about a year. Like losing weight, the longer I’ve got, the stronger I’ll be

⁃ Spread out the costs of having to buy anything I might need for after my op eg easy to wear clothes, support cushions

⁃ Work on my confidence in trusting doctors more. I’ve had way too many traumatic experiences where doctor error of some description has nearly killed me. It’s a lot for me to completely trust an anaesthetist to be completely in control while I’m unconscious. I know it’s an issue, so I wanted to work on it.

The NHS waiting lists are notorious to run long as well, so I was expecting closer to 18 months. And I definitely wasn’t expecting a call this week saying “we’ve got a date for you in a month”. I get *a lot* of these type of phonecalls, where they ring you up out of the blue and ask if you can attend X appointment at Y time and my general rule is “accept it and then work out logistics later”. So that’s what I did.

Then I sat and thought about it a bit. At first, I was annoyed because pretty much *everything* I do is never in any logical order or without some kind of major stress. Prime example: deciding to get divorced, ending up in hospital in adrenal crisis from the stress of it, travelling 200 miles to my parents in my pyjamas after getting discharged from hospital, getting put in lockdown/completely shield and stranded during a global pandemic with only a bag of clothes my friends hastily packed for me, all in the space of about 10 days. One of those things would have been enough drama, never mind all of them! I wanted to be able to have my operation and have my bedroom/living space set up so it’s disabled friendly and I can live safely and as independently as possible afterwards. And definitely not a building site. I wanted to be in the best position physically and mentally. My assistance dog in training is good, but he’s not reliable at the things he can currently do, and he can’t do some stuff I really need him to be able to do yet. That’s because he’s still learning, as my niece would tell me!

But I’ve also been watching “A Small Light” on Disney+, which is the story of Anne Frank and her family but from Miep Gies’s, one of their helpers, perspective (it’s really good, you should watch it!). Margot got told she had to report to a labour camp the next day so the timeline got moved forward and they all had to move into the annexe the next day. It wasn’t really ready to be inhabited and they didn’t have all their plans in place. Bit with Miep’s help, they did it.

Now *that’s* a stressful timeline. I get a month’s notice. Luxury really. And no matter how wary I am of doctors, they at least want to keep me alive, unlike The Franks, and they’re definitely not like Nazis! So my annoyance about it lasted all of about 5 minutes.

Miep wants to strangle (her words) her husband Jan a lot because he manages to find the small wins in challenging situations when Miep rants about it. “Let me be angry at the Nazis for 2 minutes!” she says. I’m a mix of Jan and Miep. I want to have my rant, but then I find the small wins and come up with a plan.

The biggest small win here is I got my operation waiting list time cut down from a year to a matter of weeks. That’s actually amazing, especially in a healthcare system which is still recovering from and dealing with the aforementioned global pandemic. But why though? It’s technically an elective procedure. I might have got a cancellation but I was only put on the waiting list a couple of weeks ago, there must be other people further ahead than me. I’m not an easy surgery to schedule even if it is routine- I need the orthopaedic consultant, the consultant anaesthetist, I have to be first in the day because of my Adrenal Insufficiency and I have to be admitted to the ward afterwards. It’s not like I can just be slotted in.

Well, I have some theories, but I think those doctors I said I wasn’t keen on trusting to keep me alive have pulled some strings. I’m complicated, we all know that. It took just under 2 years for people to all talk to each other and decide I was actually ok to have surgery, that the risk of not having it was more than the risks of surgery. My lengthy pre op assessment has been done and I’m currently (*touch a million bits of wood*) stable. But every couple of months, a new medical condition gets added to the list. So the longer we leave it, the more that pre op assessment will be out of date. It’s already out of date, since my meds have changed and I only did it a month ago. The longer we leave it, the more chance there is to dislocate my shoulder more, which could put me in adrenal crisis and kill me.

I know all this, but the NHS system (note, I said system, not people who work in it) doesn’t usually care. The computer decides. I could be cynical and say it’s a money thing, because if I die before I have the surgery when they know I’m a risk, then the hospital trust gets fined a lot. Which it possibly is partly down to that, but I don’t think it is.

When I spoke to both consultants, I got the impression they really understood how hard things currently are. It probably helped that I had a bit of a meltdown at the pre-op nurse when I turned up to an appointment they said I was “too complicated for”, which probably involved the (slightly dramatic) proclamation that “no one seems to care that I could quite easily die just by scratching my head again!” It didn’t quite require the level of snot that came with it, but the statement was true!

That’s a nurse and 2 consultants who made things happen on the hospital side of things. I wrote a letter to my GP practice a while ago (because they would only let me see locums, so I got desperate) while I was being passed around and getting nowhere, which said similar things. It’s possible my grumpy but amazing GP has been back sorting things out for me like he did before, and getting grumpy at the right people. That’s another doctor to add to my list of people fighting my corner.

So that’s my GP, 2 consultants who will be in surgery with me and a pre op nurse, who have clearly been very effective at their jobs and I haven’t had to chase them up once since I had that pre op appointment. That’s all the important people. Surely my subconscious brain should be satisfied with that and trust them? I’m not going to get cured of my PTSD in the next 3 weeks, but they not only did all the right things to keep me safe, but they went beyond what I expected them to and got it brought forward by a year.

Once I’d had my 5 minutes of stressing about it and realised all the strings people might’ve been pulling behind the scenes, I started coming up with my plan.

The building work and the state of my bedroom can’t be helped, but I coped living in it when I had a fractured pelvis, both feet in moon boots and my arm in a sling at the same time before so I can do it again after the op. I’m not sure how I managed it at the time but I did. Difference being is I have time to prepare this time! And it’s only one limb. Simples. I made a list of how to sort home to make things as easy as possible and once we told occupational health about the new date, they immediately got straight on to the agents they needed to to get as much sorted their end as possible. (For my running tally, that’s 6 healthcare professionals all on my case now)

I can’t do anything about Hamish learning the skills any quicker. He can do lots more than he could the last time I was so physically disabled, so that’s definitely a win. I made a list of all the tasks I want to learn/polish and will hopefully have some 1:1s with a trainer to help.

I might not be as physically or mentally strong as I wanted to be, but I’m a million times in better shape than I was this time last year. And the BIGGEST win of everything is I get to stop doing that stupid taper plan for my steroids which I didn’t want to do anyway. I’m only on 10mg pred per day, which in AI terms, is about right for my weight anyway.

It’s not like having to go into hiding with less than 24 hours notice. And there’s not a Nazi in sight! Nothing compares to that, but this isn’t even the hardest thing I’ve had to deal with either. It doesn’t, however, help me manage the anxiety around the op itself. But that’s for another blog post. And at least I have prior notice, unlike all the other times! I’ll probably be out of action for a while afterwards, so in the time I have before, I’m planning on doing lots of fun things with my dog outside, making the most of having 2 arms by doing lots of crochet, sewing and piano playing, and generally getting out of the house as much as I can.

You just watch though… I bet it gets cancelled now! 😉

It’s because I’m fat

CW: weight, diet, obesity, overweight, underweight, medical gaslighting

Being fat, overweight or obese comes up a lot in discussions with medics. I decided a long time ago that I would ignore most people who made a comment about me being overweight and I’d be direct and/or blunt back. I know I’m overweight. I can see it, I don’t need to be told it every time I meet a new medical professional like they’re the first to tell me. The majority of people treating me have the attitude that overweight = unhealthy lifestyle and thin means healthy. If you’ve ever been severely under or over weight, you know that’s not necessarily true. I’ve been fortunate (ha) to have been both, so can say you definitely get hassled more when you’re overweight than when you’re underweight. Firstly, you get asked if you’ve tried to lose weight. Then no matter what you reply, you’ll be told that most of your health problems will get better if you lose weight (so they’re all your fault) and that you really should try to lose weight. Oh, and you should exercise. The assumption is that you’ve clearly not tried anything to lose weight.

The thing that drives me mad the most, is that no matter what you answer, you pretty much get the same speech. Which means it’s pre-rehearsed and doesn’t usually bear any relevance to your individual care. They may as well be reading a script. For example, I was given the ‘you should exercise’ talk while I was sat with my arm in a sling and both feet in casts. How? How exactly would I exercise? Lifting weights with my little finger? The other thing which is annoying is the people lecturing me aren’t usually pixies either!

What I find fascinating though, is that medics are usually quite happy to preach to you about your weight, but when you point it out or get into specifics, they get a bit awkward. It’s partly because you’ve made them deviate from their rehearsed speech, but it’s also because if you think about it, the medical system isn’t actually equipped to deal with overweight and obese people. This is despite the fact that a lot of the people who are chronically ill, and therefore use the system the most, are overweight as a result of or linked to their health conditions.

These examples have all happened to me.

Physio: can you bring your knee to your chest

*I attempt to*

Physio: that’s not a great range of movement in your hip.

Me: oh, no, that’s not because I can’t do it. It’s because I’m fat and my stomach gets in the way so there’s no more room for me to do it.

She changed the subject. The real problem here is that if I hadn’t said anything, she would have assumed I had poor range of movement. The test doesn’t work on obese people.

Physical exams and imaging aren’t geared up for overweight people either. I fractured my pelvis in 2 places. I went to a&e multiple times and told people I thought I’d fractured my hip. They did x rays but they came out terrible quality, because they couldn’t see through the body fat I have around my pelvis. Rather than ordering better imaging (MRI) to double check, they assumed that I had soft tissue damage and the pain wasn’t as bad as I was saying it was. Bearing in mind I have osteoporosis, they really should have done the MRI sooner than 4 months down the line. But the doctors said that me being overweight was exacerbating the muscular pain I had. Eventually one doctor listened and got me an MRI which showed I had 2 fractures, and suddenly everyone’s attitude towards me changed. But I was dismissed a lot beforehand because of being overweight.

Doctor: you’ve got stretch marks all over your torso. This is a sign of too many steroids or Cushings disease (too much cortisol) and the fact you’re overweight. You need to taper and lose weight.

Me: you say that, but I had stretch marks when I was really thin too, and I put on more weight when I taper my steroids, not the other way round.

What was actually happening is I’d taper my steroids which were accidentally treating spontaneous angeiodema (allergy-type swelling, can lead to anaphylaxis) so I’d “put on weight” and get more stretch marks when I tapered, because my swelling flares more. But because I was already overweight, the assumption was I was lying about my weight gain trends. Plus, because I’m fat, whenever I did try to explain that my face and abdomen regularly swelled up, everyone just assumed I was trying to make excuses for being fat and there wasn’t any swelling. Whereas I was having allergic reactions which kept going untreated. Pretty dangerous, right?

Nurse: you’ve got really good blood pressure today. Well done!

Me: that’s actually pretty low for me

Nurse: it’s in perfect range so it’s fine.

It wasn’t fine, I was pretty ill later. I was in hospital after an adrenal crisis and normally my blood pressure is ridiculously high. Partly because I’m overweight and most overweight people have high blood pressure. So what’s normal range for not overweight people can actually be low for overweight people. The ranges of what’s considered “normal” are applied to everyone, whereas what should happen is you know what your personal baseline is and anything out of that is considered abnormal. For example, a normal blood pressure for me is 130/90 or something. So 170/120 is high for me (and would be virtually catastrophic for someone in the “normal” category) but 95/65 would be low for me, even though it’s technically normal.

A similar thing happens with lab range results for blood tests, and medication doses. The bottom line is, if you have more body mass, you’re going to need more medication than someone who doesn’t. This is acknowledged with kids in that they do a lot of doses on mg per kilo. But they don’t with adults. It’s a bit like putting squash in a glass and diluting it with water and then expecting the same results when you put the same amount of squash in a bathtub. For example, the baseline dose for hydrocortisone for adrenal insufficiency (what I have) is 20mg per day. I was struggling on this and told many, many people (who were also telling me that I was on too many steroids because of my stretch marks). Eventually I got a new endocrinologist who said I wasn’t on enough steroids for my weight, and he increased it to 30mg. It wasn’t a miracle cure, but I didn’t feel like I was dying as much! Now if anyone questions my baseline, I bluntly tell them it’s because I’m fat and I need more than someone who isn’t.

Me: I have this feeling where I need to eat, otherwise it ends badly

Doctors: what do you mean badly?

Me: I end up with really bad stomach ache and diarrhea and it usually ends up with me in hospital

Doctors: well that’s not possible. You’re probably just hungry. You need to learn to ignore your hunger and eat healthy things which fill you up. You’re clearly not suffering from malnutrition since you’re not underweight and haven’t had any dramatic weight loss, so your diarrhea is probably fine too.

Me: I have lost weight though, I’ve lost 2 stone

Doctors: but you’re still obese, so….

The implication being, I’m fat so I’m just overeating and trying to find an excuse to justify it. And my diarrhea can’t be that bad because I’m still fat, so clearly I’m absorbing all of my nutrients. Actually, the amount of weight I’d lost in the time I’d lost it would have been a red flag for someone who started at a “normal” weight. Now I have multiple vitamin deficiencies and doctors keep circling around the idea I might have inflammatory bowel disease. The need to eat thing? All the diarrhea was making my cortisol drop, which was making me have hypoglycaemic episodes (where you have to eat to treat it) and if I didn’t eat, I’d get more ill, have more diarrhea as my body went into adrenal crisis and end up in hospital on an IV. But all this was ignored for a long time, because I’m fat.

Don’t get me wrong, being overweight doesn’t help any of my health conditions and losing weight would. I’m not disputing that. What I’m saying is the healthcare system and the staff don’t always know what to do with people who are overweight and our treatment is often affected by this. Either because the science doesn’t work/needs applied differently or because staff’s preconceptions and assumptions influence their diagnostic thought process. The fact is, I’m fat, I’m not going to lose weight overnight no matter how hard I try so there needs to be something in the system which works with my current body mass, rather than it just relying on me losing weight. And I definitely shouldn’t be overlooked or not believed because of my weight.

Like I said, I’ve had the “advantage” of being a UK size 8 and thin for a lot of my life, so I know (in my more rational moments) that my diet and lack of exercise aren’t the problem. It’s not a lack of willpower. It’s a symptom of a much bigger set of conditions which we’re still trying to figure out. I just wish that healthcare professionals were able to look past my weight and didn’t blame me for it!

A Ranty Post About Fracturing My Hip

Says what it does on the tin, really. Potentially a long and rambley post! Normally I edit blogs, but I think it might be quite therapeutic to get it all out.

Apparently, I’ve got a hip fracture and a tear in my abductor in my hip. To add to my 4 feet fractures and my (also apparently) torn tendon in my slow to heal dislocated 3 times shoulder.

Way back in November, a healthcare worker wanted to chivvy me along and went to grab my then newly dislocated shoulder to pull me to my feet. So I tried to get away from her by rapidly standing up funnily on my right side. But because I had a moon boot on, as that foot has 2 fractures in it, I twisted and slipped and did something to my hip. I didn’t fall over though.

It’s honestly the most painful thing I’ve ever had. Way worse than the dislocated shoulder. I couldn’t put weight through it, get in and out of bed (so I slept in a chair for about a month), couldn’t get on and off the toilet… I couldn’t move an inch without incredible pain. My adrenal insufficiency was massively triggered, I went to the GP a number of times, to a&e, 3 times at the GP’s recommendation, drank oramorph like it was calpol and nothing helped. I still can’t walk on it properly and I’ve only just managed to stop walking around heavily reliant on crutches. It’s been excruciating.

However, when I went to a&e and told them all of this 3 times, they offered me… paracetamol and weren’t very sympathetic. Which I couldn’t take anyway because I was already taking cocodamol, which has paracetamol in it. I had a massive meltdown while I was there one of the times and told them they were probably going to kill me with my adrenal insufficiency and they called security on me (not because I was being threatening, but because I cried and asked* them to not let me die in the waiting room.)

*ok, I was definitely shouting but I was pretty scared I was going to die. I wasn’t swearing or threatening though. Just loud and hysterical/hormonal. And because I couldn’t move because of my hip, I didn’t have an awful lot of choice but to shout at them since they refused to come over. The security guard soon realised I wasn’t really a problem.

Anyway, once I got assessed properly and they apologised for the way they’d treated me, they put me back into the fracture clinic for my hip where I told them I thought I’d fractured my hip because of how much it hurt and the way it felt like all my other fractures. One reg was concerned about how much pain I was in and wanted to get me an emergency MRI but his consultant overruled him and said that my hip x ray was fine so no MRI. It could just be your arthritis, the consultant said.

Sorry, what? I have arthritis?

Yes, according to the x ray, I do. No one had ever told me this in the 3 other x rays I’d had done in a&e. I decided to give them the benefit of the doubt because, to be fair, the radiologist had been told to look for and report on fractures, not give me an arthritis diagnosis. They probably assumed I already knew.

Except I went to my (shoulder) physio appointment a week later and asked her to check, and she told me that the x rays are such poor quality that it’s impossible to tell if I do have arthritis or not. She showed me. They’re really grainy. So do I have arthritis or not? Still not sure.

Either way, this isn’t the first time I’ve been accidentally diagnosed/told about something in a throwaway comment. Anyway, for the last 4 months, everyone’s said that my hip injury is “just soft tissue damage” and it’ll heal by itself. Keep it moving and working and walking on it so it encourages it to heal. Okie dokie. I do what I’m told, because I’m a good patient, and I tell myself to get on with stuff, even though my hip really, bloody hurts and severely limits my day to day activity even more than anything else has. To me, it still felt like all my other fractures did but a million times worse.

A couple of weeks ago, I get a phone call saying there’s a cancellation in the MRI department and could I go in the next day for my MRI pelvis I’d been referred for. This was news to me, because as far as I was concerned, my hip problem was going to heal itself with time and no doctors were following up on it. Maybe it was gynaecology who’d requested it then? I asked the lady and she said it hadn’t come from a specific department so didn’t know. I went for the scan anyway and asked the radiographers who guessed orthopaedics based on what they’d been asked to do, but again, they didn’t really know.

I had to go to my GP for some routine blood tests 10 days later, so I asked them if the results had come back yet and did they request it. Nope, not them either, but no results. The next day I had fracture clinic for my foot, so I decided that I’d just sneakily ask the doctor then. The reg said they hadn’t requested the MRI but it was definitely my hip rather than gynae so he said he could show me. Hooray!

I think he thought it was going to come back as fine (as did I) because he read from the report and told me it was fractured and I had a tear in my abductor before I said:

Sorry, what? Seriously?

It’s actually fractured? Apparently so. And there’s a muscle tear. He asked me if I’d been in a lot of pain and I said “well, yes!”

I don’t know a lot about hip fractures, but I do know that it’s bad news and you probably shouldn’t be walking on it until it’s been properly cleared by someone who does actually know something about hips. I said this to the reg who blurted out “Hey I’m your foot doctor, I dont know”. I was a bit exasperated by this point- if he was my foot doctor and I don’t have a hip doctor and no one knows who actually asked for this MRI in the first place, who exactly do I ask about it? Besides the 3 lines written by the person analysing the report, who isn’t necessarily a doctor, there’s literally no one taking responsibility for it.

The reg said I had to go back to a&e to get back in the system. Now? I didn’t really fancy spending unnecessary hours in a&e during a pandemic for an administrative thing, when I’d look like a right idiot turning up and saying “hi, I fractured my hip in November so it’s clearly not an emergency department problem but the computer says I have to so someone can treat me”. I asked the doctor if I’d be making my hip worse by walking on it and he said “well yeah, I imagine so if it hurts bad. You have to go to a&e and get the trauma team to check it”. He might be my foot doctor, but he was also an orthopaedic doctor so it bothered me that he thought I could be making it worse the more I walked around on it.

So much for the “keep it moving and walking on it to encourage it to heal” brigade from the last few months.

My dad and I went round to a&e and said I’d had an MRI and fracture clinic couldn’t clear me for walking on it and I needed to see the trauma team. They said that didn’t make an awful lot of sense, since they’d usually get someone down from fracture clinic to clear it. They were also confused as to why I’d had a fracture clinic appointment that wasn’t about my hip but I seemed to have new knowledge about my hip. Just to add to the confusion, you get allocated a different doctor for each fracture/injury you have, I’ve currently got 2 (feet and shoulder) after managing to persuade people that having a different doctor for each foot was stupid.

After a bit of detective work by the triage nurse, I was seen by the orthopaedic reg on call in the emergency department (who isn’t attached to fracture clinic) who was a bit bewildered as to why I was saying I’d fractured it in November but the MRI was only done a week ago and if I had fractured it that long ago, the type of fracture it was should have healed by now. I said that slow healing fractures seemed to be my “thing”. He said it didn’t matter anyway because they didn’t usually do anything about the type of fracture I had (ie surgery) and it’ll heal in time and they wouldn’t follow up unless there was a problem. I don’t think it will heal though, because they said that about all my other fractures too, and they’ve still not healed.

So what do I do about it? Apparently it takes 3 months to heal, which should be about now, but the MRI they did a week ago said it was definitely still fractured and hadn’t healed. I’m so flipping annoyed about this for so many reasons

⁃ I knew it was fractured. I told them that over and over. I get a specific feeling with my adrenal insufficiency when things are fractured. Yes, stress fractures don’t always appear on x rays straight away after the injury, I know this, but I had 3 x rays done over a month. And the a&e ortho reg said he didn’t know if it was a stress fracture or not anyway.

⁃ The X-rays were poor quality so why didn’t someone besides that one reg who got shot down by his consultant think to order an MRI?

⁃ I’ve been in so much pain and so many people made out I was just being stupid and should get on with it. The amount of pain I was in and the fact I couldn’t weight bear should have justified an MRI. The reg thought I needed one. My GP wasn’t satisfied it was just nothing, otherwise they wouldn’t keep sending me to a&e

⁃ Everyone kept saying “it should do x”. In normal people yes. But one fracture clinic letter calls me “mysterious” and another referred to my physical exam as “strangely negative” despite a scan showing a positive result. And that’s just fracture clinic, I have many quirks which “should” do the opposite.

⁃ I’m getting fed up of saying the same thing over and over and being told “no it’s not fractured” for months to then be told “oh sorry it actually is fractured, you must’ve been in a lot of pain” months, even a year afterwards.

⁃ I keep fracturing things in non-trauma related ways so I get dismissed, despite having osteoporosis at age 34, and no one seems to be trying to work out *why* I keep fracturing things. They keep blaming everything on either another department or the fact that I take steroids. I think it’s a gynae and endo problem. Ie hormones- I don’t make very many of the bone maintenance ones, but can I get the two to talk to each other to get some proper HRT sorted? Not a chance.

⁃ Surgery isn’t really an option for me because it’s too risky. So I’d quite like to stop fracturing things if I can help it by getting hormone treatment sorted. And so far my foot and shoulder would’ve been operated on by now had I not got a complex medical history.

⁃ I only have one fully functioning limb left! (Everyone- touch wood!) And I’m *very* paranoid about something happening to that! My bones crunch when I breathe sometimes and I dislocated my shoulder by rolling over in bed. Sometimes it’s very difficult not to be scared that I’m going to injure myself by doing something ridiculously normal.

The good news is, if I have to have a hip fracture, this is the best type of one to get. The bad news is, I doubt it’s going to be as straight forward as the ortho doc said it was because all the other straight forward fractures I’ve got aren’t cooperating the way they “should”. And I don’t currently have a hip doctor.

Here endeth my rant about my hip. I just wish people would listen to me when I say I think I’ve broken or injured something! I’ve been right every time!

“Come Back in 3 Months”

Last week, I had 2 consultant appointments. The outcome was the same for both- “I’ll see you again in 3 months once you’ve done X”. Both had pretty bleak outcomes full stop. But one appointment made me feel empowered and supported by my doctor, and I left the other one in tears feeling abandoned and demoralised. (It takes a lot to make me cry about medical stuff)

Last time I spoke to my first consultant, she told me to taper one drug so I could start on, and if necessary, increase another one. I did this but have had a flare up since christmas so my GP put me back on the pill I got told to taper and I haven’t been able to taper again. I told my doctor this and she said “we need to break the cycle to help get you back on track”. I asked her if she had a plan, and she said that there were a few options we could try, but there were no guarantees with anything and it would be trial and error, and even then we might not have anything which worked. She briefly told me her thoughts on each plan, including the ones she didn’t want to try if at all possible, because of other problems which might arise, and explained her reasons why. I asked her what I should do in the short term, or if the symptoms got really bad/emergent and was given advice. Like most things with the NHS, there’s hoops you have to jump through, meaning that even though she was pretty sure of what treatment route she wanted me on, I had to do a diary for 2 weeks before she’d be allowed to put me on it. She could have said ‘do the diary and I’ll see you in 3 months’, but instead she said ‘do the diary, send it back to me and I’ll make an appointment to review it that week so that we can maybe get it started before I next see you in 3 months’. I was given the chance to ask some questions at the end, where I said I’d done some reading, and she said it was something we could look into if things were still causing me problems.

We. Help. Options. Reasons why. Short term. Long term. Review. Those are the words I heard. She listened to what I said. She had clear ideas of what she wanted and what she didn’t want but also took into account what I wanted. I was allowed to ask questions. I didn’t feel the need to filter or guard what I was saying in case I annoyed her, made myself look stupid, or said something that she could use against me/catch me out with. She cared about my quality of life and took my description of my symptoms seriously.

After that telephone appointment, we got in the car and drove to hospital, 90 minutes away, to go to my second appointment. This was my first time meeting her, so I was apprehensive because I’ve had some really terrible doctors in the past. Her bum had hardly hit the chair before she told me what my treatment plan was going to be: you need to taper, you’re on too high a dose. I told her what I feel like every day, and then she said I needed to taper. It felt like she hadn’t heard what I’d said. I said I’d been trying, but I couldn’t, and explained why again. The conversation continued like that for a while- her saying ‘you need to taper, you’ll end up with a whole host of other problems if you haven’t already got them’ and me saying ‘I can’t cope with what I’m on, what am I supposed to do when it gets so bad I feel like I’m dying’. Phrases like ‘You’ll feel horrible but you have to do it’ and ‘you’re just going to have to ride it out’ were said. She told me I was wrong about some things other doctors had said to me. I was told she was trying to prevent me from having bigger health problems in the future which is why she was giving me the ‘difficult talk’ now. I said about my quality of life being poor and she cited mental health as a reason and that I should be able to cope because other people did. That she was at least acknowledging it wouldn’t be easy and giving me some leeway because ‘some hospitals would refuse to prescribe any extra and I’d have to taper right away.’ What about a long term plan, after tapering and I still feel like I do every day? That she’d ‘keep an open mind but you still have to taper’. I cried for most of the appointment. I agreed that I needed to be on a lower dose, I know this and she’s completely right. But in the short term, ie for probably the next year, what do I do when my symptoms get really bad and debilitating and I can’t put up with any more. ‘You’ll just have to ride it out’. I felt like an addict being refused heroin (I’m definitely not an addict). But even heroin addicts are given a plan and/or alternative medications to help them detox of heroin. I just have to ride it out. She gave me a target for in 3 months time and said ‘no pressure if you can’t, but I think we need something to aim for’. But I did feel pressure, even if she said there wasn’t. It felt like pacifying, empty words.

You. You. Should. Have to. Difficult talk. Refuse. You. You. Those are the words I heard. She listened to what I said but it didn’t change anything. She had one clear idea of what she wanted, that she’d decided on before I’d even walked in the room, so nothing I was going to say would change anything. I asked questions and was given a perfunctory response which didn’t change anything. I definitely was watching what I was saying, worried that if I cried much more my mental health would be used against me. Which could change everything, but not in a good way. Having to ride something out and feel even more like I’m in a living hell doesn’t feel like I’m being supported.

2 different doctors. 2 different departments. 2 different experiences. But both with the same goal: taper. Except one had options and some kind of plan if it didn’t work. The other didn’t.

Largely because of covid, patients are frequently told to think about their medical practitioner’s mental health, that maybe they’re having a bad day, to show some empathy because of the tough times. I get that. I’m very empathetic. But that’s not what happened here. When I go to my doctor, I want to be involved in my treatment plan. I want my concerns to be heard. I want to feel like I can ask for help. That’s the minimum I expect from my doctor. And if you can’t deliver that in a consultation, current situation or not, then you shouldn’t be communicating with patients.

The flip side is *I’ve* been living with covid too. I haven’t been able to see my doctors, I didn’t have necessary treatment which made my chronic illnesses worse, I had to cope by myself and make decisions which I shouldn’t have had to make just so I could keep myself out of hospital and alive. These appointments were doubly important. I needed to feel positive about them because it feels like I’m firefighting and everything is burning down around me.

Neither me or my doctors can do anything about the state of the NHS and covid. But they can do something about how I feel coming out of an appointment. Both appointments had this same message: taper, see what happens and I’ll see you in 3 months. But one appointment made me feel empowered and supported by my doctor, and I left the other one in tears feeling abandoned and demoralised.

Medics: are you actually “helping”?

This possibly won’t be very coherent because I’m using my voice to text software and I’m mostly venting! Plus I’ve got some pretty strong painkillers in my system…!

Twice this week I’ve been injured by healthcare professionals trying to “help” me. Today I had to go to a&e to make sure I hadn’t fractured anything because someone tried to “help” me yesterday. It’s really frustrating.

People like me who have long term health conditions develop ways of doing things so that we can stay as independent as we possibly can. There’s a reason why we do things the way we do and it’s not always obvious to other people why, but, trust me, we do them that way for a reason. Even people who have temporary injuries or fractures which heal within a few weeks still work out ways of managing. They might not be as finely honed as someone with something long term, but if it works for them and that’s how they’ve chosen to do it, then it still needs to be respected.

The issue isn’t the help. It’s the assumption that the healthcare professional knows the best way of helping and tries to implement it without checking or asking. I know why they do it:

⁃ it’s quicker (for them) if they just do it

⁃ They’ve had training on the most efficient and ‘best’ way of assisting someone

⁃ Their way is health and safety approved

⁃ It means they don’t injure themselves

But like I said, it’s not always obvious what the whole story is. At the moment, I’ve got two fractures in both feet and I’m recovering from a recent shoulder dislocation. However, the only visible sign of a physical disability is the fact that I’ve got a moon boot on my right foot and carry a crutch in my right hand. In theory, I should be using two crutches or using it in my left hand, because it’s my right foot that’s injured. But I can’t do that because it’s my left shoulder which I dislocated, so I can’t put any force through it to use a crutch. And I’ve also got fractures in my left foot, which changes the way I move around. To a healthcare professional, it might look like I don’t know what I’m doing. Whereas everything I’m doing is because I have to risk assess which limb has the least potential to get damaged with every move I make. They can’t see my shoulder injury or left foot fractures though. And if they don’t ask…

Here’s what happened this week:

I went for an MRI, ironically on my left shoulder, and the radiographer didn’t ask what was wrong with it or how I cloud move it and pulled me by my injured shoulder to position me for the MRI. This really hurt and meant that I struggled with activities for the next couple of days which I could do myself before he did that. The joint is really unstable at the moment and I’ve dislocated it three times. He just assumed that because my shoulder wasn’t in a sling, it was just a “routine” scan. He apologised but the damage had already been done.

I went for my Covid vaccination yesterday and space was a bit tight in the cubicle. The nurse took my crutch off me because it was in her way. (Sidenote: don’t just take mobility aids away from people, it induces the same amount of panic as if someone just whips your handbag or phone away from you. It’s your lifeline!) Then she gave me my crutch back Afterwards but didn’t give it to me in a useful way, then stood in the way of me being able to manoeuvre it myself to stand up. She tried to offer me help on my left side, which meant I very quickly stood up twisting my right leg underneath me to try to avoid her pulling on my shoulder, which had already been injured earlier in the week by someone trying to “help” me. Getting up from a chair is actually a really difficult task when you’re wearing a moon boot anyway, let alone when you’ve got all the other injuries I’ve got too.

I tried to tell her that I had a system, but because she kind of launched herself at my left side I reacted instinctively and just wanted to get out as quickly as possible. I protected my shoulder, but I twisted my right leg and put weight through at the same time and things crunched in my hip/thigh.

This morning I couldn’t put any weight through my leg without a lot of pain. And I couldn’t walk at all without my crutch, whereas before I’d just been using it as support when I left the house. I was in a lot of pain and all of my fractures In the past felt the same so I decided that I should probably go get it x-rayed to make sure it wasn’t broken. Thankfully it isn’t, it’s muscular damage from having twisted it funnily. But now I can’t walk/weight bear without immense pain and I’ve been told to rest for the next couple of days.

For the sake of 30 seconds for each of these healthcare professionals this week, it’s cost me my independence, I’ve had to cancel some medical appointments in the next two days because I can’t physically get to them, I’ve had to increase my painkillers, my dad has to take time off work to help me because I’m struggling to get around and am massively at risk of falling over or getting stuck somewhere e.g. the toilet.

Today was “just“ muscular damage and it’ll only be for a couple of days, but that’s not really the point. In the bigger picture, this has made my life incredibly difficult. And the reason why is because someone assumed they knew the best way to help me rather than asking me. And when I did try to explain, I was met with the attitude of I should be grateful that I was being offered help, which is a whole other issue in itself.

Today the staff in a&e were very good at helping me. Here’s why:

⁃ they asked if I actually wanted their help (which is actually really empowering as a disabled person, even if it might not seem like it.)

⁃ they asked me questions like how can I help you get onto the bed/do you need me to…?/ am I in your way if I do X?

⁃ they told me they didn’t want to assume they knew best and to let them know what I needed

They had the full story summarised on my chart so they didn’t have to assume anything. But from asking the question to me manoeuvring in a way that was helpful and as painless as possible for me was less than a minute of their time. The questions could still be the same and applied to the situation regardless of how much information they had. Whereas for the sake of that minute yesterday, I had to spend 3 hours in a&e today and it’s had a massive impact on my life for at least a few days. Plus I’m in lots of pain. Which is never good!

Aside from getting a bit of frustration off my chest, I guess this post is to highlight that just because you think you might be helping, doesn’t necessarily mean you actually are. That an assumption is just as bad if not worse than no help at all, because of the consequences of it.That people are complicated and there is usually lots going on which might not make sense to you, but It’s still down to the patient to decide what’s best for them. At best, the patient has to potentially fend off help which they don’t want. At worst, we get injured. But it does feel a bit like I’ve been assaulted in a way, because someone did something without asking me first and I’ve got injured because of it. While there weren’t any malicious intentions, the outcome is still the same. Plus it happened twice this week. That makes future appointments more anxiety inducing for a while.

Now I’m going to top up my painkillers and hopefully try and sleep!

I Dislocated My Shoulder Again

CW: medical, death, dying, dislocation, hospital, PTSD

This post might seem a bit disjointed because I’m not even sure what direction I want it to go in, but I feel like I need to write about it so that it settles in my own head. Plus I’m using voice to text software so apologies for any mistakes! As daft as it sounds, dislocating my shoulder for the third time might have been a really positive thing to actually have happened!

A couple of weeks ago, I was happily crocheting a cat pumpkin hat (of all things) on my bed and decided I wanted to change seating position. I leant on my forearm so I could move, heard a massive crack and felt a lot of pain and realised I’d dislocated my shoulder. The same shoulder that I dislocated 18 months ago. My initial reaction was “oh for goodness sake not again”, followed by “oh for goodness sake I nearly died last time, I’m not doing that again”.

Two things you should know if you don’t already know: I have osteoporosis which means I’m more prone to fractures and dislocating things anyway, but I also have adrenal insufficiency, which means that I don’t make enough of the hormone cortisol, which keeps you alive in situations like this. When you hear of people going into shock, it’s cortisol that stops you from completely keeling over and dying.

If you dislocate a limb, it’s classed as a “traumatic injury”, and your body starts to fire out a whole load of hormones to keep you alive and keep you functioning until the “Traumatic thing” has passed. In this case, you get your shoulder put back in socket. I don’t make these hormones, which means that I have to act really quickly to make sure I don’t die before help can get to me or I can get my shoulder put back in.

I called out for my mum, who came in and then went to ring the ambulance and get my dad to give me my emergency injection which is designed to buy me some time until the ambulance can actually get to me. I kind of wedged my arm so I didn’t have to hold onto it quite so tightly because if you’ve never dislocated your shoulder before, it basically feels like your arm is hanging off, which I guess it is!! My mum got me some of my Oramorph to have as pain relief because any pain eats cortisol fast and that’s one of the massive errors that happened with the hospital last time I dislocated my shoulder (they didn’t give me any).

I have a red flag on my name and address, which means that I get the fastest callout whenever I ring the ambulance service, but the service was experiencing a high volume of patients, so it took about 15 minutes to get to me. Which is bad when you’re in a lot of pain anyway, but also terrifying as when the last time this happened I did nearly die.

Once here though, the ambulance staff were great. I explained to them that the last time I dislocated my shoulder the ambulance crew was shocking, and didn’t give enough attention to my adrenal insufficiency. They also didn’t believe me when I said that my shoulder was dislocated, they thought I was just being a bit melodramatic and it wasn’t actually dislocated and it had popped out and back in. This crew was on it straight away and knew all about what to look out for, and didn’t even remotely question me when I said that I wasn’t a textbook case and I have different things they need to also look out for. They also rang ahead to the hospital to do a pre-alert to resus (so they know you’re coming and can be ready) which is something I had to really fight for the last time. To my immense relief, they gave me the extra 100mg IV steroids to top up my own 100mg IM I’d given myself without any argument and then gave me some morphine IV too.

Just having a dislocated shoulder is enough to kill me. On top of that, I have the added anxiety/stress in *knowing* that a dislocated shoulder can kill me. Then add in the PTSD from the last time I dislocated my shoulder and it did nearly kill me, and you’ve got one hell of an adrenal crisis brewing. For the first time *ever* I had part of a normal adrenal crisis in that my blood pressure did actually drop to dangerously low (and nit just because of the morphine). But the paramedic was all over it so it was fine. And she even had time to joke about it too which I liked.

So what did help when I was trying to not get freaked out about potential death? Thinking about getting my puppy. (You can catch up on my puppy blogs and how we are going to train him to be a medical dog on the next post down.)

Here’s a photo of him, just because!

Despite what people think, you can’t just positive think your way out of an adrenal crisis, or just calm down and not get stressed. There are certain physiological things that happen hormone-wise when you’re under a lot of stress, which you can’t control once they start, but there are things you can do to try and slow down or minimise them as much as possible when they do start. This is why I’ve been doing daily meditation and mindfulness to try and identify these points before they become a problem. Obviously, dislocating your shoulder and knowing that it’s going to be stressful is clearly a stress so I immediately started doing some of the visualisation techniques I’ve been training myself for the last however many years. That said, it’s an “easier said than done” thing. But it definitely was a lot easier this time round to focus on something completely neutral like a puppy, as opposed to a beach scene, for example, which isn’t necessarily helpful, when you immediately jump to a thought process of “I’m never going to be able to go near a beach again because I’ve just dislocated another limb and only have one working one left because I’ve already got to fractured feet!” Sidenote: it was quite amusing trying to work out how to get out of the house with as little pain as possible, when I couldn’t just stand up and walk because of my two fractured feet, and my arm was basically hanging off. Sidenote number 2: it was even better being able to think about the company my puppy would give me when he arrived, because I was trying to avoid thinking about the logistical nightmare of trying to do *anything* when you can’t use 3 limbs.

It was once we got to resus that things started to go a bit awry. I’ll write a separate post about that though, otherwise I’ll just go off on a rant 😉 overall, it wasn’t a very good experience at all. However, dislocating my shoulder again might’ve been the best thing that I could possibly have done in hindsight!

If you’re a bit squeamish you might not want to read this paragraph! When you dislocate something like your shoulder, the most painful thing is when all of the tendons and muscles or whatever try to pull back the dislocated joint into its socket over and over. When your shoulder gets put back in, you immediately get relief from the pain because everything stops being pulled and stretched. I’ve now dislocated this shoulder three times. I vividly remember the relief feeling from when it happened the first time I did it, but I never got that feeling when I dislocated it last year in January. I just assumed it was because it had been out of socket for so long and I now had adrenal insufficiency which would obviously make everything feel a bit different. However, I did get the relief feeling straightaway when they put it back in a couple of weeks ago.

I’ve been saying for the past 18 months that I felt like my shoulder wasn’t sitting right, or it hadn’t gone back in properly, was still in a lot of pain, how it didn’t feel like my arm and felt like something that was just attached to my body, how it kept jerking and spasming, and how I still couldn’t use it properly. A lot of this was pre-Covid so it’s not even like that can be the reason, because I definitely went to A&E three times and said I felt like the hospital hadn’t put it back in properly. Well, it turns out that this was possibly the case!

I had various x-rays in three different hospitals in total where they said that it had gone back in properly. However, the theory now, based on what the fracture clinic doctor this week and my physio have said is that while the joint might have gone back in “properly” which showed up on the x-ray, it also sucked in some membranes/tissue it shouldn’t have which have been trapped and not making my shoulder sit right in its socket for the past 18 months. When I kept complaining about it, they should’ve done an MRI to check, which is what they’re doing now, but it’s a bit late if there’s been any lasting damage done for the past 18 months. It’s a bit like having a roll of carpet trapped under the door. The door was still close, but it’s not right and you’ll have to shove it closed.

This has made me grumpy. But aside from having been in a hell of a lot of pain that I didn’t have to be in, it’s also caused me massive issues with my adrenal insufficiency. Remember I said that your body has to produce a lot of hormones to keep you safe in the event of a traumatic injury? Well, if my shoulder hasn’t been sitting in socket properly for the past 18 months, then no wonder my adrenal insufficiency has been all over the place and I’ve really struggled to even remotely taper any steroids since.

I’m not going to lie, it was a bit weird. Immediately after it happened, and in the following few days, i was expecting to be really ill with adrenal crisis again, like I was last year after I dislocated it, and I kept waiting for all hell to break loose. But it didn’t. My shoulder actually felt better than it had done for the past 18 months and I was really confused. Surprisingly, I was in less pain. I felt like my arm belonged to me again, even though it hurt from having dislocated it. Even more interestingly, my adrenal insufficiency was barely triggered once my shoulder was back in. I’d had my emergency doses, I increased my steroids slightly, but within a few days I was back down to the dose I was on before I dislocated my shoulder and I felt… Alright. This was not the experience I’d had last time! On top of that, some of the really weird adrenal insufficiency symptoms I’ve been having every day since the injury last year, either dramatically improved or went away. It was really weird!

Now it’s been a couple of weeks and I’ve been checked by both the physio and a doctor, I know for definite that I can do more with my arm and shoulder now, than I could right before a dislocated it again a couple of weeks ago. Which is ridiculous. It’s by no means perfect and I still find it tricky, but a month ago I couldn’t:

⁃ hold a knife and fork or a pen

⁃ Hold my phone and type with two thumbs

⁃ Push and pull things very easily, including things like packets of food

⁃ Hold or carry anything that was heavier than my phone

⁃ Twist or unscrew anything

There’s a lot more but you get the idea. Basically, I wasn’t really able to use my arm at all. It hurt all the time, and the only way that I could cope with it was with lots and lots of painkillers, steroids, heat packs, biofreeze, and doing daft things like using the wall to ram a tennis ball into my shoulder joint, or hanging my arm off the bed. I managed to get a cropped top bra on yesterday and that took me about 9 months to be able to do last time!

By accident, dislocating my shoulder again two weeks ago was actually a blessing in disguise. I still have to do rehab, it still hurts, I still can’t use my arm properly, but it’s all a lot better than it was a couple of weeks ago, and that was after 18 months of rehab and trying to get back to normal. So I’m cautiously optimistic. I don’t want to jinx it but at the moment everything is looking pretty positive that it’s healing nicely. Fingers crossed!

I’m getting a puppy! (Medical dog)

I’m getting a puppy! I wouldn’t say I’m an animal person, I’ve kind of been indifferent about pets most of my life. We had rabbits and a guinea pig as pets as kids, and I liked them, and it was cool we had them, but I also wasn’t bothered when we didn’t have any pets. That said, I’ve always liked dogs. And elephants! A medical support elephant would be amazing! I’ve changed my mind about lots of things since having chronic illnesses, and now spend a lot of my time watching cute animal videos on Facebook…

When I had to stop work after being diagnosed with adrenal insufficiency, my (then, now ex) husband and I looked into getting a dog or another pet to keep me company during the day. But we decided it wouldn’t really be fair on the animal because I spend a lot of my time either lying down or asleep and wouldn’t be able to be active enough to play or look after it properly. I was also worried it would swallow my pills or eat something it shouldn’t if I’d had a bad moment and just dumped something somewhere and promptly fallen asleep. So we decided not to.

Another wonderful thing about adrenal insufficiency is there’s no way of telling what level your cortisol (hormone which keeps you alive) is at at any time. You have to guess. Which, for me, is a bit of a daily problem because I’ve got various other conditions which trigger my AI. So I’d started looking into getting a medical detection dog before I got divorced as a way to try to avoid hospital. You apply to a charity or organisation and complete medical applications and have to meet criteria about your housing and circumstances, and then you’re allocated a dog who’s been partially trained in being a detection dog in your illness. Then you finish training alongside the dog at their centre. The idea being, the dog would be able to smell/detect when I was low on cortisol and alert me, so I could do something about it before it got to a critical point or needing an ambulance. I can’t actually live alone because I can’t look after myself- I need help doing normal stuff and if I’m going to get ill for a random reason (happens once every few months, and I usually get admitted to hospital), it’s in the middle of the night. When my ex-husband went away for work, he’d have to arrange an Isobel-sitter for me, usually my friends.

Soooo after I split from my husband, I had to move back in with my parents. But obviously I do not want to live with them for the rest of our lives, and neither do they want me hanging around! The idea of a medical dog went from being a nice idea to help me out, to being one of the very few ways I could possibly be able to live even remotely independently again. There tends to be long waiting lists for these things because they’re run by charities, but because my illness is rare, there’s fewer charities that are able to train them in the first place.

I started applying last year and got through the first stages of the process, but then covid happened, which closed everything down training wise and then meant that when they did start opening up again on limited capacity, a lot of the dogs were reallocated to be covid detection dogs. Which is pretty cool, but not useful for people like me! My dad started looking down the alternative route, where we’d get our own dog and apply for funding to be able to take it to training. As it turns out, the charity is still on limited operations, because a lot of charities are struggling financially and volunteers-wise since the start of the pandemic. Which means I don’t actually know when they’ll start training sessions again or taking on new applicants.

The advantage of living with my parents means that my dad, who works from home, can be around to help out/train/play/use the dog as an excuse to procrastinate. It also means that the dog gets the attention and care he needs too.

My dad had been looking on and off for dogs for a while when a friend of a friend shared that their dog had just had a litter of labradoodle puppies. I don’t really know much about dogs, but this breed has a good temperament, they don’t get too big, they’re smart and they have hypoallergenic coats (apparently!). Plus they’re cute! So off we went to see them, just out of curiosity. We went on the way back from fracture clinic which had been a bit of a faff and I’d had a fair amount of depressing news. Seeing puppies afterwards was kind of my bribery to myself to get through the day. No one can be sad around puppies!

Well. Within a few hours, we’d reserved a puppy! I think I’ll save the excitement of meeting him for another blog post. That way if you’re reading this mostly from a medical detection dog point of view, you can skip it out 😉 and people who want puppy spam can focus purely on that!

Here’s a cute photo of him in the meantime though!

When would you go to a&e/the ER?

TW: death, hospital

Whenever I go to a&e (UK version of the ER), I don’t tend to spend a lot of time in the waiting room. I get triaged quickly and then moved to a cubicle so I can be kept an eye on because of my adrenal insufficiency. But this week I kept getting sent in by my GP, which didn’t need a fast triage, so I spent a lot of time waiting and watching people come and go. And it was fascinating!

It made me realise that my perception of what constitutes as normal in relation to health and what actually is normal are completely different. The majority of the people who booked in had legitimate reasons to go to a&e when they did eg injuries, bump to the head, sudden pain, but to me, none of it was really *that* bad. To them, it was a pretty horrendous day.

The thing about having a chronic illness which can turn critical, is you start only complaining about things when they’re really bad, and you only go to a&e if you think you might actually die or you just can’t cope anymore (and you kind of want to be out of it because then you don’t have to deal with it). If I’m actually in a&e, I’m at the end of my tether, nothing that I usually do is working and I desperately need someone to help me. But this doesn’t seem to be the case for a lot of people who go to a&e to get checked out. And, last week, I ended up sitting in a&e on 4 separate occasions, feeling like I was wasting everyone’s time because I wasn’t actively dying, but my GP didn’t know what to do with me. Which got me thinking. At what point would someone with all of my symptoms but without all of my illnesses have gone to a&e? And should it make a difference, just because I know what’s ‘wrong’ with me?

I start every day waking up feeling sick, dizzy, really tired and in pain as a minimum anyway. I maybe have about 30 seconds of waking up where I don’t feel anything and then it all hits me like a ton of bricks once I wake up properly. Sometimes I wake up feeling worse, but, in general, I wake up feeling like what most people would feel like when they have a heavy cold or flu. Which no one needs to go to a&e for.

Last week, I had a bad week and had the following, which just got worse as the week went on (in no particular order)

⁃ feeling like I was about to be physically sick rather than just feeling sick

⁃ Stomach ache with an upset stomach

⁃ Headaches

⁃ Nodding off in the middle of doing things. I dropped my phone on my head a lot!

⁃ Getting those floating eye thingies that you get before you pass out

⁃ Blurry eyes in general

⁃ Dizziness even when lying completely still

⁃ Heavy legs and arms

⁃ Pins and needles in my feet and hands

⁃ Really bad muscle pains (my scratchy pains)

⁃ Spasms which felt like someone was repeatedly punching me

⁃ Poor coordination

⁃ Itchiness/burning skin

⁃ Racing heart/tachycardia. My watch kept going up to 160bpm

⁃ Funny heart rhythms which went back to normal if I held my breath

⁃ Feeling like my head was underwater and I couldn’t hear or see properly

⁃ Really bad insomnia because of pain

⁃ Anxiety and tearfulness. I was definitely not very rational. I got asked if I was suicidal a couple of times in a&e

⁃ I couldn’t put weight through my foot properly after a few days (turns out I’ve fractured it)

⁃ Not liking light and sounds

⁃ Sweating

⁃ Tremors/shaking that made eating hard

⁃ Difficulties going to the toilet but also desperately needing to go at the same time

⁃ High blood pressure

⁃ Pains in my chest

⁃ Pains in my ribs when breathing

⁃ Swollen feet, calves and hands

⁃ Swelling on one side of my abdomen

⁃ Rashes and pigments

⁃ General confusion and issues finding words

⁃ General lethargy

I lasted a few days before ringing my GP. Who increased one of my antihistamines and said if it wasn’t better in a couple of days, to go to a&e for consultant input. After about a week of that, I followed her advice and went to a&e. I felt bad. I knew I didn’t actually need a&e because I wasn’t dying. But if I didn’t go and get on top of this, then at some point in the next week I’d definitely need it because there’d be potential of dying from adrenal crisis. Which takes a lot longer to recover from!

(There was a big NHS fail/faff which meant I ended up going backwards and forwards between a&e and my GP 4 more times, but that’s a blog post for another day)

In other words, I knew what was coming and I didn’t want to have to actually be at the brink of death before I got help. My first argument was, you wouldn’t wait until someone had a heart attack before intervening, if you could do something about it beforehand. But after my second or third trip hanging out in a&e, my second argument was had I turned up to a&e with those symptoms without having chronic illnesses, someone *would* be helping me. They’d help me with my pain at the very least. Diagnosed illnesses or not, symptom-wise, I was still the sickest person in the waiting room on every occasion. But they’d all come to a&e and got *some* kind of help. Whereas I got told 3 separate times that I had to go back to my GP because a&e couldn’t do anything about my long term problems. Which was factually true, but I needed help with my immediate, increasingly getting worse problems. And my GP kept telling me I was too sick for them to be able to treat me and they wanted me seen by specialists/medical doctors, which should be accessed via a&e. I just wanted someone to take away even one of my symptoms by the end of it!

It also raises another problem, which I told the last a&e doctor I saw. Everyone was assuming that all my symptoms were because of my already diagnosed illnesses. Which, as it turned out, wasn’t completely true. With those symptoms, I could have had a brain tumour or another random cause. My GP was pretty annoyed by this point and decided to get me admitted to hospital a different way (rural healthcare works differently to city red tape wise- another blog post!). Which thankfully worked! Even if it really did ruffle a few feathers. After spending a day admitted and Dr Fatima doing an excellent job at asking the right questions at the right time, she found I also had vitamin d insufficiency and low calcium, which possibly wasn’t the sole cause of my immediate worsening symptoms, but definitely wasn’t helping. I got diagnosed with 2 more illnesses that day. Despite going to a&e 3 times before that. So assuming that my symptoms were just because of my existing illnesses was totally wrong, and I really did need help.

However, Dr Fatima also missed the fact that I had a broken foot too. I’d shown her it in the context of my hands and feet swelling up and it was hurting when walking, but she put it down to me being cushingoid from steroids (also wrong, but to be fair, she was taking advice from my endo on the other end of a phone who hadn’t actually seen me). Two days after being admitted, I had to go back to a&e because I couldn’t put weight on my foot and it hurt all the time now. This time I just told them I thought I’d broken my foot and didn’t mention all my other stuff, and an x ray later they said I’d rebroken an older fracture which had healed badly because I hadn’t had it treated, because I didn’t know I’d broken it. So, again, even though I’d told people my symptoms a lot last week, I ended the week with 2 extra diagnoses and a fractured bone. No wonder my adrenal insufficiency/other chronic illnesses were all kicking off!

Which means that all of my trips to a&e were valid. A broken bone in itself is a reason to go to a&e, let alone chest pain, swelling, dizziness… But it took me 4 a&e trips, multiple GP calls, many endocrine meltdowns and over a week of me feeling like surviving every minute was some kind of living hell. If I hadn’t had diagnosed illnesses which are known to give debilitating symptoms, at what point would someone else have gone to a&e? At what point would they have been given medical help, rather than being sent home to deal with it (albeit, everyone was very apologetic about not being able to or allowed to help me)?

Short answer is probably a minute after my 30 seconds of waking up wears off. The NHS doesn’t work for people like me. If your symptoms aren’t that bad (GP), you’re fixable (urgent care or a&e) or you’re actively dying (a&e) then it works well. But anything long term that gets worse fast which can’t wait the 6 months it takes to see your consultant and it’s actually pretty terrible. And we all have different tolerances to what we can deal with anyway. You can only measure your health/pain based on the worst you’ve experienced. You’re not going to know how bad pneumonia is if you’ve only ever had colds, so a chest infection will feel like you’re dying if you’ve only had colds until that point. The reason I managed to break my foot and not notice wasn’t because it didn’t hurt, it’s because it wasn’t the most painful thing I was dealing with at that point!

Last week made me rethink what constitutes as ‘normal’ for me. And ultimately it’s made me realise that I put up with a hell of a lot on a daily basis, and I shouldn’t feel bad about going to a&e sooner, if it means I get a bit of short term relief from symptoms I can’t cope with anymore. Because I can’t do anything to change the system overnight, but the system will have to change to help me eventually if I keep turning up needing help, even if it is just to get rid of me 😉