My chiropractor’s leaving :(

I had my last appointment with my chiropractor yesterday 😦 She’s emigrating, so leaving the country as well as the practice. Without sounding like a crazy stalker, I’d have followed her wherever she went in the U.K.! I like all the other chiropractors at the practice too, but I love my chiropractor.

About 3 years ago, I got really desperate with the amount of pain I was in in my back, neck, jaw, head, chest, the fact that my ribs were locking up to the point I couldn’t breathe, my back kept going into spasms so bad I had to hold my breath for 30 seconds until it stopped… I was still trying to go to work and all of that while trying to be a music teacher (where breathing is extra important), plus the other endocrine things I had going on was exhausting. I couldn’t sleep. I was sticking lidocaine patches on as many bits as possible and on about 4 different types of pain killers. My husband had found our chiropractor, Bex, a few months before for his bad back and suggested I go see her.

Bex never said she could cure me or make all my pains go away. Because she got that it wasn’t as simple as ‘this bone here is doing x and it shouldn’t’. But she also never questioned my pains/problems like other HCPs have, even though it never presented as a ‘normal’ problem. Do you know how much difference it makes when someone says ‘I hear you, I’ll help where I can’ rather than making out like you’re the problem or it’s all in your head? In fact, her motto has always been to get my body working as best as it possibly can with what it’s got. She could have just done the bare minimum and taken my money, but she looked at me as a whole person rather than just my bones and muscles, and went away and did research wherever she could. Again, do you know how rare that is?

But I got so much more than just feeling physically a bit better from going to see her. She’s listened to all of my rants about doctors (and there have been many), she’s said what I’ve needed to hear when things have been particularly rough, she’s celebrated in my victories, even if they’re small, and she’s done extra things to help me out or squeezed me in when she’s already fully booked to try to help me stay out of hospital. Besides my husband, she’s the person I’ve seen the most regularly every week for the last 3 years, because I see her a minimum of twice a week.

If you’ve ever had regular contact with a healthcare professional, you know that you get ‘attached’ to their way of doing things or you know they ‘get’ you. So it would be sad that she was leaving anyway. But when that person is genuinely one of the nicest human beings you’ll ever meet, and she ‘gets you’ on a whole different level, it’s really upsetting!

I’m excited for her and her new adventures, but I’m pretty sad too. I know I wouldn’t have coped the last few years without her, because some weeks the only bright spot in my week was knowing I would see her and she would make me feel better physically and mentally. That I know she’d know what to say to dig me out of whatever hole I felt like I was slipping into and take it as her personal mission to make me feel at least a fraction better physically before leaving. And she’s never, ever said any of the cliche phrases that lots of people trot out to the chronically ill, which I’m so grateful for. And she’s never told me that I will be cured if I eat kale and do yoga! 😉

I know the rest of the Chiros will look after me well. But I’m really, really going to miss her and the positive impact she had on my life.

I bought a mobility scooter

Last week I bought a mobility scooter and it arrived this week! This is really exciting for me for many reasons:

– currently my husband pushes me in a wheelchair whenever we go somewhere which requires walking. Neither of us particularly likes it- he hates pushing it and I hate not being able to go where I want to. Even just going for a ‘walk’ in the park, I don’t feel in control of anything- it’s a bit disconcerting when you think you’re going one way and you find yourself going in a slightly different direction. Never mind when he forgets to put the brakes on and I roll down a slope…!

– I can’t manually push a wheelchair myself because of the exertion required. And sitting in a wheelchair pushed by someone else makes you feel particularly useless.

– some days I don’t leave the house or have to force myself to do things more than I should eg doing blood tests is only over the road, but some days I shouldn’t walk that far but have to. Now at least I have the option of doing it safely.

– it means I can save my energy for targeted, productive exercise which will be a benefit to my health eg physio.

– the mobility scooter, believe it or not, folds down smaller than the wheelchair does. And a lot more simply! So it gives me the option of taking it with me if a friend takes me out.

Buying a mobility scooter was a bit more complicated than I thought. There are different categories of them which dictate what you can and can’t do with them. So a category 3 is road legal but you can’t take it indoors in a lot of places. Whereas a category 2 you can take indoors but isn’t road legal. But they don’t necessarily fold down, which is more like a category 1.

For me, I wanted a scooter which I could use on short trips outdoors eg to the pharmacy or the doctors, but I could take inside when I go out with my husband eg the shops or supermarket. I wanted it to be able to fold up so I could get it in a car boot. Other things we had to think about were:

– where would we store it in the house? It’s a big piece of equipment

– how it would charge up- does the whole scooter need to be attached to the charger or just the battery?

– range

– maximum user weight limits (which impact on the motor and range)

– the weight of the scooter itself. Some are really heavy!

– comfort in terms of being able to adjust the seat/handle bars. The wheelchair causes me pain going over the slightest bumps and I can’t sit in it for long

– can I unfold it myself so I can do trips during the day without my husband putting it together for me? Some of the smaller ones dismantle rather than fold- there’s no way I could dismantle it every time I needed to use it.

– normal batteries vs lithium batteries. Lithium batteries last longer and are approved for air travel.

The NHS doesn’t cater for this kind of mobility device because it’s seen as a luxury. And to them I don’t ‘need’ ie, I can physically walk. So I had to privately buy. And they’re not cheap! After having done our research, we narrowed it down to 3 models from one company. We contacted the company and they arranged for a demonstration at our house.

The salesman came and had the 3 models we were thinking about. One had hard wheels and a non-lithium battery, the middle model had a lithium battery and wheels you actually have to put air in (can’t remember the word but the idea is it’s softer to drive over bumps!), and the other model had a more stable wheel position, along with the other options. I was mostly considering the middle model until the guy showed me how they fold up and down- the more expensive model you can do with your foot so it’s like a pram mechanism, rather than having to bend down. Bending down makes me ill so that was a huge plus for me. Then my husband tried to see how easy it was to destabilise it while driving (he just about stopped before he started doing figure of 8 drag racing style) and the more expensive model was definitely a lot more sturdy. And it was more lightweight too.

The good thing about mobility devices which are used for disability is that they’re exempt from VAT, so I managed to save money there. We placed an order and were given 3 months free insurance and 2 year warranty, which is a bit like what happens when you buy a car! They were also doing a deal which meant the price of the more expensive one got knocked down to the model we’d been considering anyway.

I hadn’t thought about insurance but it makes sense. You might have to leave it parked places outside, you might break down, someone might close a door on it and break it. I’m clumsy so I might break it! And insurance covers all of that. So I think I’ll carry it on when it comes to the end of the free period.

The salesman rang the company and used my card to make a transaction. I have to say I was quite relieved he took care of all the paper work and my husband checked it, because that would have been beyond me. I didn’t feel like I sometimes do when talking with other salesmen, where I feel like I’m being conned. This bloke was genuinely helpful and honest. Then it arrived this week! The same guy who sold it to me delivered it for me and gave me a demo to make sure I knew what I was doing. He even unpacked it all from the box and set it up in the position I said I preferred. Again, it’s little things like that which make a lot of difference so you can tell that the company has thought about what their customers need rather than just trying to take your money.

I wasn’t bothered about using it, like I was when I first started using a wheelchair. I thought everyone would notice or comment on it, which they do when I stand up or get out of it (‘clearly she doesn’t need a wheelchair if she can stand up’), but I just ignore them now. I also wish I’d ‘admitted defeat’ sooner and used a wheelchair earlier than I did because it actually meant I could join in more with normal every day things rather than isolating myself and staying at home. But I’ve also realised people don’t tend to notice unless you give them something to notice eg if you look awkward using it, they’re more likely to notice that than the wheelchair in the first place. Also, people don’t automatically assume you can’t walk if you use a mobility scooter, so fewer people are surprised when I get up. It also gives me more flexibility to get up and move around myself, which is hard when you’re being pushed. The other thing I like is that because you’re moving yourself independently, people don’t talk down to you as much as they do in a wheelchair- lots of people think I’ve lost the ability to speak in a wheelchair and usually interact with my husband instead, or talk to me like I’m a child. There’s also a lot less chance of someone just moving you out of the way because you’ve got wheels and a handle and you’re ‘in their way’…

Having a mobility scooter doesn’t mean I’m going to use it all the time. I quite like walking and I need to try to avoid being de-conditioned. But it’ll allow me to choose when I want to rest and when I want to walk, which is the big difference. It gives me the freedom to actually enjoy some of what I’m doing rather than concentrating on staying conscious. I’m quite excited by the opportunities having one presents anyway!

Fourth Wedding Anniversary

This isn’t going to be a post where I gush about how four years ago I married my best friend/the man of my dreams/the most amazing human being ever. Because that would be at the very least an over exaggerated version of the truth, if not a lot of white lies…

My husband has lots of qualities I love about him, and admire or appreciate. He also has lots which drive me mad! But then so do I! I definitely annoy him more than once a day and vice versa.

The point of marrying someone isn’t because you know you’re going to have the fairytale singing animals with Disney-style fireworks going off in the background. Besides, a lot of those couples, or their children, usually end up cursed by some random old hag they let in off the street at some point in their future. I think I’ll pass. The reason why you get married to someone is because you want to live with them and have them around despite all of their flaws. You’ve basically picked one human that can put up with you and your randomness forever, and you can reciprocate it.

I’m sure some people do ‘marry their best friends’ but then who do they moan about their spouses to if that’s the case?! Why narrow your social circle by marrying one person who plays multiple roles? If you asked me who the ‘man of my dreams’ was 10 years ago, I wouldn’t have remotely come out with anything resembling my husband. But that’s ok, because I also had dreams that I’d live somewhere exotic and own a yacht, but those things didn’t happen either.

Of course, I could just do what a lot of people do and say all that stuff anyway. One thing I have learnt in this 4th year of being married, is that what people say about their marriage and the reality are very different. A lot of it’s for show. If anyone says the phrase ‘happily married’ without being prompted, it sets alarm bells off. Using words like ‘amazing’ etc more than once in a social media post about your spouse, the same. Who are you saying all that for? Are you trying to convince other people or yourself? The other thing I’ve learnt is that people sometimes use their children to hide behind. I get the impression that some people I know had kids because they didn’t know what else to do once they got married. That doesn’t mean they don’t love their family, but I wonder if they would still be with their partners if they didn’t have kids.

Being married is about being there for the difficult times as well as the good times. Because there will probably be more challenges in life than ‘amazing’ experiences, because that’s just how it works. It’s about someone being there and showing up when you need them to, even if you might have to spell it out for them sometimes. It’s about thinking about someone else besides yourself. Compromises. Doing things you don’t want to do sometimes because the other person does- I hate sports cars and my husband hates crochet, but we still talk about them to each other. It’s about sharing your salary, or your food with someone else (if I share food with you I must like you). Or sending each other shopping lists via text message rather than signing off with a million xxxx. It’s about all the stuff you can’t put on social media because it’s so mundanely boring that no one would care. Because that’s what life is 90% of the time. And marriage is you sharing the boring stuff with someone else to make it less boring.

Marriage isn’t about knowing where the other person is every second of the day. Or spending every minute together. It’s good to have your own stuff you like to do and your own friends. Otherwise what do you talk about?! That yacht and exotic place you’re dreaming of, I guess. You can still have your own ambitions and dreams, but you’ll also have shared ones. And you pass the boring times looking forward to and planning the exciting times.

Four years in and I feel like I care less about what people think. I never really put on a ‘happily married’ show before, but now I definitely don’t feel the need to. More I’ve acknowledged that life isn’t perfect and living with one other person without plotting how to bury them under the patio is actually a huge achievement in itself, never mind living in Disney harmony with singing woodland creatures! (Disclaimer: I’ve been watching a lot of FBI programmes. And we also don’t have a patio!) A lot of things have changed in 4 years- I’ve become unemployed and my husband has been promoted a few times. I’ve put on a ton of weight, he’s lost loads. Ive gone from being super active to a sedentary (lady of leisure) lifestyle and he’s now the more active one. My husband has to look after me more than the average person my age needs because I’m chronically ill. Does he like it? Nope. Do I? Nope. Nothing is remotely the same as when we got married! But that’s what being married is. Things change, you have to evolve with the world. But as long as you remember that you picked another human being who ‘gets’ you for a reason in the first place, everything has a habit of working out ok.

My week with the NHS: 22nd October

After last week’s eventful-ness, I could do with a week off!

Monday

The day after hospital, all I want to do is lie down and sleep. Except, I’m still not entirely convinced I haven’t fractured my rib as well, and the doc the other night in a&e didn’t even poke me where I said it hurt (or anywhere on my ribs for that matter) and didn’t X-ray it. He put my pain down to infection. But it doesn’t feel like infection type of pain, it feels mechanical. The pain has improved since IV steroids and pain killers, which it likely wouldn’t if I’d fractured my ribs, but it hurts right above the bones in my spine which I know are osteoporotic. I wish he’d done the X-ray just to rule it out!

Handily, my chiropractor is amazing and offers to X-ray it for me. So off I go this morning to get it checked. It’s not stress fractured (hooray) but it is badly sprained and twisted, so she tells me how to manage the pain and movement and tapes me up. She said the infection might be aggravating the pain too, but I’ve definitely sprained my ribs.

Once I get home, I have to ring my GP to organise more oral hydrocortisone and to replace the injection kit I used the other night. I have spares of both, but it can take 2 weeks of debates sorting this kind of thing out (are the last 6 weeks of rants about it!)

Tuesday

Brexit and pharmaceutical supplies post-Brexit is in the news again. Except this time the charities are getting involved and telling patients that we should talk to our GPs to make sure we have ‘adequate supplies’. No one official has said we should stockpile, but there’s a vast difference between taking medications to stay alive and taking medications to improve your quality of life. If I don’t have my steroids, I would die. There isn’t an alternative treatment. If I didn’t have my asthma inhalers, I *could* die but ultimately there are things I could do to prevent an attack and there are different options.

Wednesday

I have a red flag with the ambulance service so that if I ring 999 from my address, I get a quick call out and an ambulance and crew who can administer hydrocortisone to me. You have to renew the flag every year, but this year the policy has changed so I now need a letter from my gp saying why I need the flag. Which is a bit frustrating because it means more admin for me for something which I’ve had in place for years. Today I had to pick the letter up and email it to the ambulance service. Fingers crossed it’s fine.

Today I also had a mobility scooter test drive! I can’t walk very far at all and have been using a wheelchair pushed by my husband when we go out. But I’d rather be in control of my own movements, so I’m buying a mobility scooter. Even with the wheelchair, we bought it ourselves because the nhs doesn’t fund things like that except for physical disabilities, and even then people have to fight for it. But it will make a big difference to my quality of life.

Thursday

My husband picked up my prescriptions for me but the pharmacist is having issues getting hold of oral hydrocortisone and only has the brand that isn’t licensed for adrenal insufficiency. It’s because the nhs only prescribes 10mg tablets but I need 2.5mg multiples and certain brands can’t be split into 4. In general, she said they were having major supply issues. Guess I’ll start my stockpile now then…

Friday

The pharmacy rings to say we can go back and swap the hydrocortisone for the other brand. Technically, they’re not supposed to swap medicines once you’ve left the premises with them, but I’m happy they’re letting us do it. We can’t get there before the pharmacy closes so will have to go pick them up next week.

Saturday Night in A&E

Surprisingly, I think I’ve managed to avoid being in a&e late on a Saturday night, despite all my hospital admissions! It’s a very odd place! I’ve never seen so many policemen, people in handcuffs, passed out people with IV fluids…

Anyway, I’d been having really painful ribs for a couple of weeks which got massively worse on Saturday. I didn’t really know what it was, it turns out I know now that I’ve sprained my ribs/intercostal muscles, and to use the phrase my husband uses for every pain he has, ‘it was the worst pain I’ve ever had’! I couldn’t move at all without being in agony on Saturday, breathing got so bad at one point that I was basically hyperventilating just trying to breathe because my ribs would only expand a fraction. Then I got my ‘I could be in trouble’ feeling I get when my adrenal insufficiency causes me problems at about 1am so I eventually called an ambulance.

The ambulance crew came and said I might have fractured a rib. It’s usually left down to me in these situations as to whether I want my IV hydrocortisone or not. I really wasn’t keen on having my emergency injection because my endo has me on a reducing taper plan and having 100mg would ‘ruin’ that. But then the paramedic rephrased it slightly differently and said ‘what’s worrying you more right now: being ill because of your adrenal insufficiency or ruining your taper plan?’. Being ill was more of a concern, so the tech she was training gave me my HC IM so he could get that competency signed off. I also had some pain relief which didn’t really touch it. Surprisingly all my obs were pretty normal, so that wasn’t much help! In the ambulance, I could hear her explaining to the third crew member about how adrenal insufficiency can be hard to diagnose and hard to treat and she got it all spot on. I was pretty impressed because most HCPs usually only know the medical side in an emergency, not the complexities of managing it day to day and the issues we face.

A&E was busy. Ambulance triage was empty but there were a lot of people waiting in beds in the corridor. I definitely wasn’t having an adrenal crisis, so I was low priority. While I was waiting in the corridor, my lovely nurse appeared with some IV HC. So I said I’d already had some and she went to check with the doctor who said I needed to have it. This is a good thing because a) they knew adrenal insufficiency requires monitoring b) I’m supposed to have IV HC fast on arrival to hospital, but I usually end up fighting for it c) judging by how insistent they were, they’ve finally listened to my complaints through PALs and have a protocol/pathway in place. Hooray! Another 100mg was possibly overkill, but it definitely helped with my pain so maybe I did need that much after all.

The thing about being in a corridor is you hear everything. There’s no privacy at all. Obviously no one gets examined in the corridor, but everyone can hear your conversations, what medications you’re being given, your name and date of birth which you have to confirm before being given the meds, what your obs are… If you need to complain or ask questions, it’s very public. And you’re more likely to have people ‘joining in’ with your discussions. Particularly if they’re drunk. You definitely can’t sleep, and you’re pretty much right in the middle of chaos so it makes the whole experience a lot more stressful. You don’t have a call button so the only way you can ask someone something is if you grab them as they walk past, but quite often you’re told that someone else is assigned to you and get forgotten about. The corridors aren’t wide enough for that level of activity and beds, so your bed gets bashed quite a lot, which is disconcerting anyway but every bump was agony for me. If you’ve got a friend or relative with you, they can’t wait with you because there’s no space, and god only knows what happens if you need the toilet and can’t get off the bed…

One of the things we found a bit frustrating was that there was space for patients in cubicles, but they didn’t have the staff available to deal with it. It was busy, but it wasn’t the busiest I’ve ever seen it. They’d actually closed down most of one section of minors because there weren’t enough nurses and doctors. Most of the nurses were agency nurses rather than ones employed by the hospital.

Eventually I was put in a cubicle and then had to wait a long time for the doctor. The department gets fined for breaches (starting at 4 hours)- you can usually tell when the clock is getting close to a breach because you’re suddenly given a lot of attention quickly, and shoved out the door, if they can get rid of you, or admitted. The longer you’re there, the bigger the fine.

I don’t have an issue waiting if I’m not critical. But I knew I was going to have a problem at 7am when I was due my oral dose of hydrocortisone. I had some with me, but, as I hadn’t seen the doctor yet, I didn’t want to use it if I didn’t have to because if I was getting admitted, I’d potentially need it on the ward. At least in a&e they’re more likely to get stuff quicker.

You can only take meds which have been charted by a doctor, and the doctor can only chart it if they’ve reviewed you or your file. This is what usually happens when I’ve been given IV and I want oral hydrocortisone:

– I push the buzzer and ask the HCA for my oral dose. She can’t just go to the doc, she has to go to the nurse, who can then go to the doc

– the doc looks at my chart and thinks ‘she had some at 3.30am, she doesn’t need anymore until 9.30am because she’ll be covered by it til then

– This gets filtered via the HCA back to me. I send them back again and say it doesn’t work like that, can I speak to the doc or at least the nurse

– HCA comes back and says no. I wait a bit and then start the whole process again.

– eventually, someone will get significantly fed up of me asking the same question that they’ll come and talk to me, usually with the attitude of telling me how wrong I am. Or they’ll start to ignore me, in which case I go stand next to the nurses station until someone has to listen to me.

– then I’ll get told it’s not that time sensitive and it doesn’t matter if I take it a bit late. Again, it doesn’t work like that.

At this point, I usually run through my rationale calmly:

– HC is time sensitive. It doesn’t matter how much you tell me it’s not, it is time sensitive, and I can die from wrong dosing. If a doc hasn’t reviewed me, it’s even more important that my doses are on time, because you don’t actually have a definitive idea of what’s going on yet.

– an IV might ‘cover’ me, but it’s supposed to be in addition to my normal baseline in emergent situations, not instead of. I still need my baseline.

– if I have an oral dose later because of the IV, that’ll push my other doses back. So my 7am dose at 9.30 would mean my 11.30 dose would have to move etc. That messes up my circadian rhythm, which will mean a longer recovery time. But giving me my dose on time won’t do me any harm at all.

– there won’t be any oral hydrocortisone in the department so regardless of how much I want it on time, it’ll be late anyway because someone will have to hunt some down. Which is why I usually leave an hour to start this process off.

– The other problem I knew I was going to have is that handover from night to day shift would be happening around the time I needed my meds, which meant I really didn’t stand a chance in getting them on time if I didn’t get it sorted before.

My nurse was on break when I started this whole drama, but when she came back, I told her all of the above, which she understood completely. The problem is, people assume you just want bumped up the queue because you’re impatient, whereas actually, I just wanted the doc to chart my meds so the nurse could give them to me. I didn’t mind waiting longer, I just didn’t want to die before he got down his list! And, on a Saturday night, everyone has short tempers and low tolerance for people moaning, which isn’t fair to people like me who are genuine.

The doc (apparently) got fed up of listening to my nurse and the matron pestering him about me and my hc, so marched down to give me a lecture about why I don’t need any oral Hc. He got a polite lecture back. And because everything I ‘predicted’ had happened, right down to not having any hc in the department, the nurses were very firmly on my side by this point. The doc had been querying kidney stones up until this point but then told me I had an infection instead, which means double steroids and even more need to have it at the right time. After trying to write up prednislone (big no) instead and trying to tell me again that it didn’t matter what time I had it, I ignored the doctor and me and the nurse negotiated 25mg IV HC which would be an almost equivalent of my oral dose.

I never used to be so persistent with asking for my meds at the right time because I didn’t want to bother people. But you actually have to be like that because otherwise your care can really suffer. It’s like a game of Chinese whispers, and I have no guarantee that the person who answers my buzzer actually goes and asks the person who can deal with my request. And, when it’s busy and understaffed, things get missed or forgotten about.

I was all set to go with my antibiotics when the doc comes back and tells me my lactate is high and I need a bolus of fluids before I can leave. He’d already given me my blood results and had said they were all fine, so something must have been niggling him. The nurse hangs the fluids and I have about half the bag when the doc reappears and says that the consultant says I’m fine and don’t need them so can go home.

Again, this is all based on numbers on my chart. Numbers are good indicators, but for me they don’t necessarily work. I’ve had blood work that says I should probably be in a coma or close to it and have felt pretty alright in the past, or vice versa. I didn’t argue the point because I actually felt ok. However, this is where short staffing has its pitfalls- numbers on a chart shouldn’t replace actually looking at the patient. You get a lot more from sticking your head around the door and seeing how sprightly someone looks than just going off numbers.

It was a bit annoying that a lot of the people in a&e that night had ‘self inflicted’, alcohol related illness or injuries. The NHS is free, but because it’s free, there’s absolutely no reason for people to actually think about the consequences of their actions and take responsibility. We happened to leave at the same time as a couple of drunk students and their friends who accompanied them, and they seemed to have found the whole experience almost like a rite of passage and part of being a student.

So my weekend was a bit more eventful than I’d planned. And a&e on a Saturday night isn’t fun. At least it wasn’t a full moon too!

My week with the NHS: 15th October

A pretty busy week this week.

Tuesday

I had to do my asthma review today. They’re a bit of a waste of time for me because I don’t get anything out of them, but it’s one of those things that has to be done and it’s a good thing for my gp to check in with my asthma treatment. In an asthma review, they check your inhaler technique, make sure you know the different types of inhaler and what they’re for, do your peak flow (your lung capacity basically) and ask you some general health questions along with checking your weight. I’ve always been good at managing my asthma and when it’s been out of control, it’s been beyond the scope of the GP practice nurse anyway.

I was pleasantly surprised because in comparison to the other day when I basically had the minimum interaction with the HCA she possibly could manage, the practice nurse was super friendly. I’ve had her before, she’s nice, but she’s also part time so I don’t see her much. She remembered who I was, and the fact that I used to be seen by the severe and brittle asthma clinic. That’s good patient care because I haven’t been to that clinic for 4 years and I’ve only seen her a couple of times since.

Even better, she made it clear that she wasn’t going to change anything and said I was an expert patient so she trusted I would come back in if I felt my asthma was uncontrolled. And then also said that we were both just going through the motions.

This made a massive difference about the way I approached the rest of the appointment. Before, I’d been moaning about how I’d probably get a lecture about my weight and the fact that I’m on steroids because the last few times the nurse hadn’t understood why I was taking them. But her saying that showed she knew me, that she’d personalised my care and even though we were just going through the motions, it didn’t feel like a huge waste of time. The whole appointment only lasted about 4 minutes but they were a productive 4 minutes where I felt I was the focus.

Wednesday

My endo told me he wanted to see me in 6 weeks. I know the nhs computer doesn’t always generate an appointment letter until a month before the appointment, but I still hadn’t had a letter through after a month. So I rang my endo’s secretary who said my referral hadn’t gone through so I currently had no appointment. In most hospitals, this would mean the clock would start from the point of referral, which according to the computer would be today. So I’d be waiting a further 6 weeks from the 4 weeks I’d already waited. And, because the nhs is a bit slow/fully booked, it would normally be closer to 10 weeks (or more) for a 6 week wait list. However, this hospital is really good at getting you in at the right time so the secretary said she’d try to squeeze me in somewhere. I’ve not had the letter yet, so that might change but they’ve been good in the past.

Thursday

I made an appointment with my GP because my endo said that my gastric issues weren’t necessarily cortisol related so to check in with my GP. It’s getting a bit annoying but my endo says some things are down to my gp and my gp keeps sending me back to my endo with them. My gp doesn’t seem to appreciate that not all of my symptoms are endocrine related, but equally doesn’t want to mess with what my endo is doing. Which I can appreciate.

However, my gp also doesn’t really understand my condition at all so the appointment wasn’t the most useful one in the world. And, frustratingly, she hadn’t read my discharge notes from hospital, so started trying to order a lot of tests they’d already done there. It’s a bit disheartening as a patient with a chronic illness to be told that you and your conditions are confusing, that you might just have to ‘put up with it’ and to have to correct some of the really basic facts that people get wrong. Does my quality of life matter less than someone who only has gastric problems? What would be done for someone who had the same symptoms but no chronic illness? I don’t mind people saying they don’t understand, I’m sure my GP is doing her best with what she knows, but, in general, it feels like there’s no joined up thinking in the nhs and I’m just seen as a bunch of walking symptoms and conditions rather than a human being as a whole. My gp ordered some blood tests and then said to get a phone appointment to follow up.

Friday

Today I had to do a blood test for my endo. Because he’s in a different trust to the one I live in, I had to go to the hospital there to do it. And because my gp is in a different trust to him, it means I can’t just do all of my blood tests for my gp and endo at the same time because the labs won’t take them. Which means getting stabbed twice and making 2 trips out to sort it. Not that big a deal, but it is when me doing a blood test is my one activity of the day- it means I don’t manage to do other things I need/want to do. Like have a shower.

People really struggle getting blood out of me, particularly when I’m not well and everything clamps down. After 5 minutes of wiggling the needle around in my vein and another 5 minutes trying elsewhere, we got there in the end.

Saturday

The weekend did not go as planned and I ended up ringing 999 and spending a night in a&e. It turns out I’ve sprained my ribs and everything kind of seized up and was super painful, making it hard to breathe. I was trying to manage it with pain killers but then it triggered my adrenal insufficiency (pain uses up cortisol fast) and I needed help fast. I wrote another post about it, which you can read here.

On the plus side, my endo’s secretary worked wonders and I got the letter through today. My appointment is 7 weeks from when I last saw him.

Hoping for a quieter week next week, although being in hospital requires more patient admin afterwards 😦

My week with the NHS: 8th October

Writing these weekly entries has made me realise that I actually put up with a lot of not so good care (shall we call it) than I perhaps would do if I only used the NHS every now and then. Part of it is a statistics thing- I see more people so I’m more likely to experience poor care. But then you’d think I should also see more of the amazing bits too. This week I would class as average. Nothing was particularly bad but it wasn’t amazing either.

Monday

Today is flu jab day. So I go to the appointment at the flu clinic. The jab is given by a healthcare assistant. In summary, here’s what was not so good about the experience:

– the receptionists didn’t look up from their computers when I got to the desk and when I was interacting with them

– the HCA didn’t tell me her name.

– I didn’t get a sticker… it might sound trivial, but the NHS is spending probably thousands on stickers/pens/discount vouchers to encourage their staff to get the flu jab but it doesn’t give stickers/rewards to patients who get one. Why? In my mind, NHS workers should just have the jab and get on with it because they should be educated in the pros enough to know it’s a wise move. I hear ‘I don’t like needles’ as a reason staff don’t want to get it, except they’re also usually the ones who tell me to suck it up when someone who’s in training can’t get a line in properly and needs to stab me a lot. Or ‘I don’t want to feel ill for a couple of days’. You’d rather see vulnerable patients like me be critically ill or die instead?

– the receptionists ignored me again when I was trying to make an appointment for my asthma review. In the end I had to say ‘I’m not very good at standing up, can I sit down until you’re ready’. Then they forgot about me when they’d finished so I had to go back again.

– In the time I was waiting for the receptionists, I could have (if I wanted to) read a letter from a consultant to the gp about an 8 year old girl who had a whole host of medical conditions. This is because they’d left a letter on the front of the reception desk, facing me and easily readable, despite me being stood behind the privacy barrier. I obviously didn’t read it, and raised the issue with the surgery.

The good things about the clinic:

– it was running on time. In fact, I think it was a bit early.

– the HCA pointed out I needed my asthma review, which is handy to know because usually the first you hear of it is when they stop your repeat prescriptions because you’ve not had your review. And we all know the dramas I already have with prescriptions…!

I’m not a fan of asthma reviews. I’ve just never found them helpful, but I imagine they could be helpful for people who don’t manage their asthma well and need the guidance. My last few have been a bit of a waste of time because the surgery hasn’t understood why I take steroids (not for asthma) and I usually get a massive lecture about how I should be tapering off them. And get told off for being overweight. But, I also appreciate it’s something that has to be done, so I made an appointment for the following week.

Tuesday

My husband went to get my repeat prescriptions. They were all there so we did a little victory dance!

Wednesday

My endo told me to work out when I felt the worst during the day and then book a blood test for that time so we can see what’s going on. This one needs to be done in the hospital. After looking for patterns for the last couple of weeks, I have the most problems between 3am-6am (not helpful for a blood test though!) and in the afternoon, so I made an appointment for about 2pm next week. I really like the online systems this hospital has now- I can go online and book a blood test and then it sends me text and email reminders too. It’s also a similar system to when you book in at the hospital, which makes it really user friendly.

Trying to socialise

I used to be super confident. I’ve lived abroad in a completely different language, I’ve traveled by myself, I used to be a teacher and didn’t bat an eyelid speaking to an assembly of 300 kids, I used to perform on stage.

That’s all vanished now. Now I really hate having to talk to new people, even if they’re friendly. I avoid places where I might have to talk to anyone new. I don’t answer my phone if I don’t know who it is. Part of it is because of the physical aspects of my illness- background noise feels like it’s squashing me, it feels like I’m trying to speak in a foreign language or sometimes I just can’t concentrate on what people are saying to do the conversation any justice. Then I go home and worry if I said something stupid or if I offended that person by accident. Some of it has become a habit in that *because* I physically can’t go out by myself, my human interactions are more limited and therefore I’m less likely to manage because I’m not ‘practising’ interacting daily.

I go to a women’s group once a month with a friend. Someone speaks and we have a bit of a chat. I sit with my friend as much as I can so if I can’t cope with conversation, I can just listen. Except this month, my friend was on holiday. I considered not going, but I’ve been going a while, so even though I’m happier going with my friend, it’s not like the people were strangers. And I know I need to get myself out of the house so I don’t lose all my independence completely.

There are some practical things that also make going out in general a bit more tricky. Eg people need to know about my injection, what to say to an ambulance crew if needed and where to find info in my bag. So I texted this info to 2 of the women who run the group that I know well and they assured me they’d look after me.

I actually meant it to be more of an information thing than anything else. But they both text back and said they would make sure I was ok. And they did. They’d printed out my message ‘just in case’, they kept an eye on me in a non annoying way and they said they were glad I’d come even though I was a bit apprehensive without my friend being there.

This kind of surprised me a bit. I realised that more recently I’d not only become anxious about being in social situations because of the difficulties I mentioned above, but also because I’d started to worry about ‘ruining’ things if I became ill. You can have an adrenal crisis just as quickly as you can have a heart attack. You can be fine one minute and not the next, even if you’ve done everything right. Sometimes it just happens. And when I am ill out and about, I try and keep it as drama free as possible- I tend to remove myself from the situation and quietly get on with it until paramedics come.

But I realised I’d started doing this because I didn’t want to be seen to be making ‘a fuss’, because people had stopped inviting me places ‘in case I got ill’, or because people had told me how I should manage myself in the days leading up to what they consider an important event so I don’t ‘ruin’ things by being ill. People have actually said the word ‘ruin’ to me.

If I felt ill enough before something, I wouldn’t go. I’m not stupid and I’m not an attention seeker. People saying those things not only makes me feel unwelcome, but it knocks my confidence and increases my level of anxiety before I even get there. Which then increases my chances of actually being ill. And then it’s a self fulfilling prophecy. Am I supposed to hide away just in case something might happen? Do other people with disabilities get told the same thing? Someone could just as easily have a heart attack or trip and get a concussion or get run over. Difference being is I know what to do if I get ill. I have plans in place.

So I was grateful to these women because they not only put my mind at ease that there was a plan just in case, but also because even though they know that I spend every day walking a tight rope, they still wanted me there. I didn’t feel like I was going to ‘ruin’ anything and I was a lot calmer for it.

I probably shouldn’t be wasting my energy on people who feel the need to put caveats into our plans which involve me not ‘ruining’ things. It’s probably more to do with them than me. But it doesn’t half make you feel more isolated and anxious when people do, especially if you consider them friends. I’m grateful to my friends for looking out for me today and making me realise that my presence is still valued. But I’m also looking forward to my friend being back from holiday too 😉

Why I felt more stressed than normal on world mental health day

Did anyone else? Social media was full of #worldmentalhealthday. People sharing awareness posts, their own experiences, offers of support, telling people it’s ‘ok to not be ok’, what people should/shouldn’t be doing for their mental health… it was too much.

I’m not criticising genuine awareness posts or people sharing their experiences. Everyone has a different experience when it comes to mental health. But I spent a lot of the day feeling overwhelmed or angry by what I was seeing, and had to stop looking at social media for the day to protect my mental health. Ironic really.

There were a lot of bandwagon posts

Lots of people were saying how they’d ‘cured’ their mental health by doing X. Mental health isn’t something you have or you don’t have, it’s a constant, fluctuating thing. Anyone can have periods of depression or anxiety brought on by circumstance, but living with depression or anxiety chronically every day is a whole different thing. Let alone the less ‘trendy’ mental health conditions. It just felt a bit like the people who were claiming something had cured them were grouping themselves in with people who have to work hard at it every day. I found it made me feel inadequate or like I wasn’t putting enough effort in.

Inspiration posts weren’t always helpful

Some people wrote a status about their experience. I don’t like posts which end ‘I just wanted to say that anything is possible if you put your mind to it’ or ‘don’t give up. I didn’t and I managed to overcome it’, or similar words. In a lot of cases, the post seems to be less about inspiring others and more about the person sharing it getting told how wonderful they are. Don’t get me wrong, some posts were good to read, but they weren’t written with language which was supposed to inspire me. They were more of an account of their experience.

Only doctors should give medical advice

I saw a few posts with people telling other people what they should do to better manage their mental health. Unless it’s from an approved source eg a health body, no one should be telling someone else how to manage any aspect of their health. It’s especially complex with mental health because there are so many variables. If you’re vulnerable, you’re more likely to take something you’ve read online as verbatim, when in actual fact it could have been completely made up. I’m sure one person in the world does believe that doing yoga during a full moon ‘cured’ their mental health, but that doesn’t mean that there’s any medical fact basis to it.

It’s ‘ok to not be ok’ drove me mad

Is it though? Because it’s not just a case of having a conversation over a cup of tea and saying ‘oh I feel so much better now’. But that’s the impression I got from a lot of posts which had this as an underlying message. Some (not all) posts like this were bandwagon posts again, or showmanship ones, where the person is doing it for the attention they get, not for the support they can potentially provide. Having conversations and opening up are definitely good places to start, but they need to be sustained more than a cup of tea and a chat.

Some offers of support were clearly fake

The thing that made me most angry was the showman posts. Posts written by people who I know for a fact are not there when you’re ‘not ok’, because either I have, or someone else I know has, asked for support and not had it. Saying you want to help is one thing, actually helping is another. It shouldn’t be on your terms, when it’s convenient for you or if you can make yourself look good by telling other people how you helped. It doesn’t even need to be a heavy thing. Showing up and keeping someone company is sometimes all it needs.

Stop comparing mental health to a broken leg

Most people with a broken leg will have a similar experience- you get a cast put on it, take some painkillers, get the cast off and do your physio. And you won’t have a broken leg anymore. Some people have issues afterwards, but a lot of the time it’s straight forward. Saying ‘if you had a broken leg you’d take the pills, why don’t you think the same with your mind?’ Isn’t helpful. Because it’s not the same! Everyone experiences it differently. It’s not always the standard 6-8 weeks a broken leg takes to improve. You can’t see your progress on a scan. Saying that implies that there will be some end to your condition, but what if there’s not? It trivialises it somewhat. If I sound a bit over the top, then why do people not say ‘if you had cancer you wouldn’t think twice about taking the medication…’? Because cancer is considered ‘serious’ and we shouldn’t compare mental health to something that kills people. Even though mental health conditions do kill people. But cancer patients have good spells and bad, relapses and remissions, in the same way mental health patients do. It’s a far more accurate analogy, but the comparison is always the broken leg scenario. That your mental health can be fixed.

Being medication free shouldn’t be a benchmark as to how well you are

I take antidepressants every day. Am I depressed every day? No. My mental health is probably better than someone else’s out there who doesn’t take antidepressants because they’re determined to be medication free. Does that mean they’re better than me? No. And I’m not ‘better’ than them. Why is having to be medication free even a thing? Obviously you want to be on the fewest meds and the smallest dose you possibly can, but why is it that people who take antidepressants beat themselves up if they can’t get off them? Seeing posts with people saying how they were proud to be medication free was a bit of a double edged sword. I felt happy for them that they were in a good enough spell mentally to be able to come off them, but they shouldn’t have been made to feel like that was a benchmark for their success in the first place.

So rather than fuelling my negative spiral of anger and anxiety about world mental health day, I decided to come off social media for the rest of the day yesterday. I regularly give myself time offline because I know it makes me feel worse sometimes, but yesterday was a particularly stressful day for it. Lots of people posted with good intentions and I’m not criticising that. I’m merely offering an alternative opinion as to how sometimes a hashtag can cause other problems other than the message it intended.

My week with the NHS: 1st October

Monday

At the end of last week, I tried and failed to get my new med added to my repeat prescriptions and no one would give me it because it was ‘new’. So I ended up missing 2 doses. Ironically, my BP was probably the best it’s been in a little while all weekend!

My husband rang up in the morning to ask what was going on. Turns out the doctor hadn’t even processed or signed the script, so the receptionist vowed she’d get it sorted and would send it to the pharmacy. What I suspect happened is whatever locum was on prescriptions that day didn’t want to have to deal with me and my complex health either, so probably passed it on to my actual GP, and it vanished or never got given to her.

Mid afternoon, the surgery rings me and says we need to go get it because they can’t send it to the pharmacy. Fine, except my husband always tells them to ring him back and it should say on my file that they should ring him in the first instance. This is because I was having to stay awake a lot when dealing with this kind of thing, when I should have been asleep. But if I go to sleep and my phone rings, I’m not with it enough to be able to form a sentence but also it massively jolts my adrenal system. So we signed a form to say my husband could deal with some things on my behalf, but they don’t always follow it…

I text my husband to ask him to pick it up on his way home from work, he took it to the pharmacy and finally we manage to get the tablets!

Wednesday

It’s now time for my monthly repeats to go in. No one laughed at me this month for having a long items list, which is good. I also booked my flu jab for next week. Certain groups of people are eligible for the flu jab; the elderly, pregnant people and people with chronic conditions which might leave them more vulnerable. Most GP surgeries run designated clinics and a lot of pharmacies also offer them.

Thursday

  • My letter from my consultant from our appointment came today. Whenever you see a consultant, they summarise what was said along with any new treatments and test results and send a copy to you and your GP so everyone knows what’s going on. In theory, the GP should be able to access it digitally the moment it gets authorised by the hospital. But that requires the GP buying into the ICT system the hospital uses, which mine hasn’t. It sometimes takes about 6 weeks for the letter to arrive, which can be annoying if your GP needs to issue any repeats before it gets there- they’re obviously not going to give you new meds until they have the directive telling them to, but you need to take them because your consultant says to. This is why you tend to get given a hospital prescription for the first month or so when the consultant changes things.
  • A pretty quiet week really! But weeks like this are welcome 🙂