Third Time Lucky?

I’m pretty grumpy. I did my ACTH test yesterday, which involves coming off steroids for half a day before and I got a letter today saying that the test was void because the phlebotomist didn’t put the blood in the right coloured tube, so it went to the wrong place and can’t be analysed.

I’m a reasonable person and get that human error happens. But considering this illness can kill me pretty easily even when I’m taking my drugs, the fact that I have to come off them to do the test has the potential to make me seriously ill. This will be the third time I’ll be taking the test, and I also did the same test two more times a few years ago. These three times it’s been messed up because of hospital error, the two times before that the NHS didn’t want to do the test because they didn’t think the results would be ‘relevant’ (down to money). Except after a lot of debating, I saw a new endocrinologist who immediately said ‘why haven’t they done the ACTH test?’ and ordered it. So the NHS was trying to save money, but now I’ll have done the test five times? Go figure…

It also has a big knock on effect when tests get messed up and have to be repeated, which I don’t think HCPs recognise fully, as when we’re not physically in front of them, we’re just a number in the system. And when we are physically in front of them and have a melt down because there’s all of this going on in the background, I think they find it hard to empathise and think we’re being over dramatic. Mistakes happen, and that’s fine. But when taking the tests relies on a bunch of things, it has a chain reaction:

  • I have to wait until I’m next healthy to do it. It took me 7 months to be well enough to able to do that test yesterday. I really hope it doesn’t take another 7 months…
  • It has the potential to delay other appointments, like consultant ones. Thankfully I’ve got a bit of time before I next see my consultant, but it could quite easily have meant I would have to wait another 3-4 months.
  • It delays other appointments in other departments. If you’re a complex case like I am, you get seen by many different people, with a lot of ‘wait until we get the results back from X before Y happens’. Trying to schedule all those appointments and tests in the right order is bloody hard work. And involves a lot of waiting.
  • There’s absolutely no point in me going to my GP to help with my symptoms because she’ll just say ‘wait until you’ve seen your endo’ and I can’t see him until I’ve had the results of this test. In the meantime, I’ve been surviving on 3-4 hours sleep a night for about 4 years, have a weird heart rhythm, pins and needles and migraines which have all appeared since I last saw my endo, and I’ve no idea if they’re because of my existing illnesses or if I’ve got something new. But she can’t refer me to another consultant e.g cardiologist, because my weird heart rhythm could be because my ACTH is playing up.

That’s just the reactions within the NHS and my treatment. I’ve been doing tests and been in limbo for over 3 years now. With no end date. I read a blog post about cancer patients and how they feel ‘stuck’ while having treatment because people are either waiting for them to get better or to die. Which is kind of where I am- I’ve got this illness for life, but the impact on my life depends an awful lot on big tests, like the one yesterday. If my pituitary has a short circuit, there might be a treatment I’m currently not on. If my thyroid is broken, then, again, there might be something that will help. There might not be, and I might feel this shocking forever, but at least then I’d know and be able to make plans in the same way everyone does when circumstances limit them. At the moment I’ve just got lots of unanswered questions which pop into my brain when I’m low cortisol and can’t sleep:

  • Am I going to be able to have any kind of job again?
  • Will I be able to have a family?
  • Will I be able to travel to places I want to visit?
  • Can I drive again and get some of my independence back?
  • Will I be able to move to a different place in the country? At the moment, all my treatment is based here, and if I move to a different county, I’d have to start from the beginning again and there’s not chance in hell I’m repeating 3-4 years of tests.
  • If Brexit makes the NHS privatised how the hell am I going to afford treatment?
  • How are we going to afford things like christmas and birthdays and trips to visit people?

etc etc

And, also, hormone glands don’t just fail overnight (in this case anyway). So there’s always a small part of me that thinks ‘if I had made them listen sooner then maybe we could have prevented this from happening’. The longer I’m not on the right treatment, the more chance there is of other circuits in the endocrine system breaking.

It makes applying for financial support difficult when I keep having to say ‘I’ll know more once I complete the test’. I’ve already said many times about the last hospital error and how I had to fight for my thyroid to be checked- they’re not going to believe me when I say the hospital screwed up again, even though it is the truth.

None of this is very good for my mental health. The nature of this illness is that people tend to think because they haven’t heard of it, it isn’t as life threatening as I make out. After a few incidences where doctors nearly killed me and I survived by sheer fluke, it makes me not trust medics very easily. The hospital messing up the blood tests twice isn’t really helping with that paranoia. Now when I repeat the test again, I’ll not only be stressed about having to fast and withhold drugs and trying not to die, but I’ll also be anxious that they’ll mess it up again. Stopping my steroids is bad for my mental health too- it makes you paranoid, anxious, obsessive, depressed, and the feeling like that lasts for a couple of weeks after the test until your system rights itself fully. Then add in all the things I have to worry about which would make me feel like that anyway, I feel like a ticking time bomb. After 3 years, I’d quite like to have some of my life where I don’t feel like I;m just surviving day to day and I’m actually living.

Human error happens. It’s one of those things. It wasn’t the pathologist’s fault, who I spoke to today, so shouting at him wouldn’t have helped at all. So I didn’t, I thanked him for his apology and asked him to give me very detailed instructions to tell the phlebotomists so it can’t happen again. I’m not even annoyed at the phlebotomist, she probably thought she did it right. But the effort of having to not get upset about it, then having to ring and sort out the problem and trying to work out logistics the day after I stopped my steroids made me feel really terrible and run low on cortisol. But I don’t want to stress dose because then I can’t do the test again!! What I’d like HCPs to realise is that while they might think that any setbacks are pretty minor, when you add them all together and look at what a patient is dealing with as a big picture rather than individual brush strokes, there’s a lot individual HCPs could do better to support patients when things go wrong.

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ACTH Test Complete :)

I did my day curve test yesterday and they booked me in for my repeat ACTH test for this morning. I already did this test when I had to repeat my synacthen in June but the hospital didn’t flash freeze and blue light the blood in the 30 minute time limit so they couldn’t read the ACTH. Which was very annoying. But at least they didn’t make me repeat the synacthen test again.

ACTH is a hormone released by the pituitary gland, which tells the adrenal glands to make cortisol. We know my adrenals don’t make cortisol on their own, but we don’t know whether it’s just because the adrenal glands are broken or if it’s because the message from the pituitary isn’t getting through to tell it. If there’s lots of ACTH in my blood, it means my adrenals are broken but my pituitary has some function (primary adrenal insufficiency). If there’s not very much ACTH in my system it means that my pituitary has a short circuit in it (secondary adrenal insufficiency).

From the results from my synacthen, where they measure how much cortisol your adrenals make after you’re given a synthetic version of ACTH, we’re assuming that my adrenals are pretty useless because they didn’t do much after the ACTH was injected into me. It was a pretty flatline result. But we don’t know much about my pituitary.

The test itself is easy. It’s just a blood test and it took me longer to walk to the department than it did to actually do the test. However, you have to do very specific prep for it, which is why it’s been really hard for me to complete until now:

1. You need to be on your baseline of steroids for 10 days prior. I’ve been ill a lot so stress dosing a lot.

2. You need to stop your steroid meds (anything with steroid in, not just tablets, so inhalers or sprays too) at least from the night before. NB if you’re doing a synacthen or stim test it might be longer.

3. You have to be ‘well’ for the test. So no illness, temperature, emotional or stressful problems.

4. You can’t do it after you’ve come off a night shift because it needs to be done when you wake up. Not a problem for me but worth me saying.

5. It has to be done first thing in the morning.

6. You might have to fast for it. The doctor didn’t actually tick either of the fasting/non fasting boxes, so I fasted just in case from midnight the night before. It depends on your endo

7. The sample has to be flash frozen and blue lighted to a central lab so you need to be at a place where this can actually be done. E.g. Doctor surgeries can’t flash freeze samples

The hardest bit is the not taking steroids bit. I only really missed 5mg because I took my morning dose immediately after the test, but the thing about the doses is that timing is key. It’s really hard to play catch up on your symptoms rather than treating them preemptively. It’s a bit like waiting until a shark has almost ripped your leg off before intervening- you’ll be having trouble with it for a long time afterwards whereas you’d recover quicker if you’d got rid of him sooner. So it wasn’t fun, I’ve felt truly shocking this afternoon and I don’t feel overly Spritely now. I’ve had a bit more hydrocortisone than usual today and shall take it easy the next few days.

There isn’t much difference in my current treatment if there is a problem with my pituitary gland, because I already have the life threatening illness bit and am on treatment. But it might lead my docs to test other hormones made by the pituitary like growth hormone, or to do a deeper analysis of my thyroid function, which might help alleviate some symptoms.

I’m just happy I got the tests done yesterday and today. I’ve got a few more blood tests to do this week, something to do with cholesterol and my liver (which, surprise surprise is somehow linked to cortisol), but they can be done locally rather than at the hospital.

I’m Finally Doing My Day Curve Test

Today I’m in hospital doing a day curve test. A cortisol day curve test shows how much cortisol is in your blood at different times of day. I’ve had the test once before, when I was first diagnosed where they wanted to check I wasn’t having too much cortisol in my system, so the test was done immediately after my tablet times. This time they’re testing to see what my cortisol level is right before my next dose, so how much fuel is left in my tank before I top it up, basically. My endocrinologist ordered this test in march/April, but I’ve not been well enough to do it until now- you have to be on your baseline dose for 10 days before doing the test and I haven’t been consistently on it for that long since march.

This is hopefully going to be useful because I feel pretty terrible about an hour before my next dose is due. So it feels like my cortisol drops out of my system quickly and then I struggle a lot. But I don’t know this for sure, which is why we’re doing the test.

It’s pretty easy as far as tests go. I have to turn up to the phlebotomy part of the hospital at 12.15 and 16.30 (the latest the department is open) and they’ll take my blood. And that’s it! The hardest thing was potentially getting the importance of the times across to the staff- it has to be done before my tablets but my tablets also have to be on time. So if there are any delays because the clinic is busy it could cause a problem. Thankfully the receptionist was on the ball and, when I went back to the desk to ask how late they were running, she’d already pushed me to the top of the list and said she’d been keeping an eye out for me.

The rest of the time, I’m free to do what I like in between. If I lived closer I could go home because they’re not cannulating me today. I’ve brought some crochet to do so I’ll probably hang out in the cafe for most of the day. However, the test needs to show my cortisol level on a ‘normal’ day. So I need to be doing activities I would usually do e.g. Walking around a bit. Otherwise the results would show what I feel like when I sit down but not actually able to do anything. That’s like filling your car up thinking you’re driving for miles but then only driving down the road- you’d obviously have loads of fuel left over. It doesn’t mean you never use the fuel, it just means you didn’t use it at that specific time. So you really wouldn’t want someone to come along and say ‘you need half the amount of fuel to run your car’ because then you’d only ever be able to drive to the corner shop and never a long drive.

I’ve done my first test, had my usual lunch of soup and am currently people watching all the staff who’ve just come in for lunch. It’s pretty interesting eavesdropping!

‘I couldn’t have asked for better care’

I like the NHS. It’s free and it keeps me alive. Not all my treatment is available on the NHS for free, but the main bulk of it is. However, I would say that overall, the majority of my care is ‘average’. Sometimes it’s exceptional, sometimes it’s shocking, but on the whole, people treat me in the way I’d expect to be treated. I spend a lot of time hanging around in waiting rooms of various different treatment centres, so I overhear a lot. I find comments like this interesting:

– I couldn’t have asked for better care

– the staff were amazing

– they went the extra mile

Sometimes, the person saying it has received exceptional care and the comment is justified. But in a lot of cases, it’s become one of those phrases that you say about the NHS even if it isn’t strictly true because people have heard other people refer to the NHS in that way. So it’s kind of become an expected comment. Especially if people don’t have many interactions with the service. While eavesdropping recently, I’ve heard people say those phrases in relation to:

– being able to book a flu jab for the next day rather than having to wait 2 weeks

– because the doctor introduced himself

– after having had their wrist plastered

– because someone was polite

Those aren’t examples of extraordinary care. That’s what the standard of care should be. Even worse, I’ve heard people refer to being exceptionally cared for because:

– they were given a warm sponge bath rather than freezing cold water which is what they’d had the day before

– they were given their insulin at the same time as their meal rather than having to wait half an hour by which point their dinner was cold

– someone took the time to explain their procedure to them rather than just doing the bare minimum of the job and not interacting with the patient

– the nurses talked to them during obs times rather than just picking up their limbs and not interacting

– receptionists smile and make eye contact rather than just looking at their screen and vaguely talking in your direction

Again, that’s what people *should* be doing. It doesn’t deserve the phrase ‘I couldn’t have asked for better care’. Like I’d say to student teachers, you might have delivered an outstanding lesson but you can always think of a different approach for the next time because there’s always something you could have done better when you’re dealing with humans. So I started asking a couple of people what makes them say that, questions like:

– did your buzzer get answered and did you get pain relief in a reasonable time?

– did you get your obs done regularly? (I’ve had mine filled in on my chart and no one actually come and take them a couple of times)

– did you feel like you were able to make an informed decision about your care?

I was surprised that a lot of people answered no. Which means their care could have been better.

So why do we say ‘couldn’t have asked for better care’ when actually, we could have had better care? It boils down to the fact that the people who work for the NHS tend to be overworked, underpaid and overstretched. Meaning, instead of making complaints about having to wait an hour for pain relief, people are more likely to give them a free pass and say it’s because they’re overworked. Which is true, but it kind of becomes a self fulfilling prophecy; we, and the overworked staff, want things to change, but because we don’t complain about it, there aren’t as many ‘black marks’, which means the (foolish) government we have continue to make very stupid decisions about how the NHS should be run. I’m not saying that everyone complaining would fix the problem, but it would make it very difficult for the government to ignore, not to mention piss them off, if there were hundreds of complaints in the system about level of care which could be avoided with improved staffing or extra funding.

I spend a lot of time with HCPs, so here are some examples of extraordinary care where the staff did go ‘above and beyond’ for me. Because brilliant care does exist, and it’s important to recognise it:

– a senior fellow spent about an hour and a half tracking down and talking to my (also very senior) endocrinologist to get the best treatment plan for me after being admitted to the assessment unit. This meant I actually had a treatment plan appropriate for me and not some vague fabricated one or just being told to apply sick day rules (which is expected advice). They’re both very busy people and I wasn’t actually supposed to be on their patient load that day, so I really appreciated the time they took to help me, and it helped me recover far quicker than normal

– my gp has spent 2 hours of her admin time (i.e. She’s not supposed to see patients) on a couple of occasions, giving me an extra long appointment to give me the best advice

– a paramedic risked a lot by arguing to support me when his colleague disagreed that I needed hospital prior to diagnosis. There weren’t any obvious clinical reasons for me to have called an ambulance that they could assess, I’d rung because I had a really bad feeling, the paramedic had treated me before so knew I was genuine, and if he’d stuck to the rule book, I’d be dead right now.

– doctors who immediately say ‘I don’t know what this is, teach me’. I think it takes a lot of balls to be confident enough to say that in the current culture of medicine.

– a nurse who worked out I needed the toilet roughly every 20 minutes when I was in a&e but couldn’t walk, so just started appearing with the commode, despite being overworked, underpaid and overstretched

– the nurse in charge making a point of coming to see me to apologise that it was a noisy ward full of old people and I was the youngest there. She couldn’t do anything at all to make it quieter and less stressful for me, but she said she’d help me get as good quality of sleep as she possibly could.

Extraordinary care does exist but it’s very much dependent on the good will and integrity of individual staff members rather than the system as a whole. For example, School is free to attend, teachers are also overworked, but it wouldn’t be acceptable if the teacher ignored one child all day and didn’t get round to marking their book because they were busy dealing with more problematic pupils. So why do people put up with it when it comes to NHS care?

Sometimes, people genuinely couldn’t ask for better care. But I think it’s important to make the distinction between someone doing their job adequately in difficult circumstances and actually receiving amazing care. It also is a little bit rude to the people who always give very good care if they’re lumped with people who just do what’s expected of them!

Crocheting Blankets

Weirdly, I love crocheting big projects like blankets but hate knitting similar things like scarves. Knitting isn’t as quick and takes a lot more wool to get a similar length, or maybe it’s because most long knitted things don’t have enough variation in the pattern of each row, I don’t know. But I really enjoy crocheting blankets.

Most beginner crocheters start with granny squares which can be turned into a blanket or go ahead with a blanket itself. I didn’t because I wanted to make animals for my other blog, Out With Animals. So it’s actually taken me until this current blanket to be able to feel like I can do it without having to rip out loads when I’ve gone wrong in the pattern.

I always planned to make my niece a blanket for when she was born, but then she arrived 11 weeks early so I had to get a wiggle on quicker than I thought I needed to! I made her this granny stripe blanket from Attic 24’s pattern:

I chose pinks, purples, greens and blues because I didn’t want to just assume she’d be a girly girl and like pink. As it turns out, she does seem to like pink a lot! I didn’t do it in a regular repeating pattern because I wanted it to look a bit random.

It was a pretty steep learning curve doing it though. I realised I hadn’t really learnt how to chain properly, since most animals are made of circular shapes so I got very good at magic circles, but had no idea how to chain. So doing the foundation chain was interesting! I also kept adding or losing stitches at the end of rows, mostly because I didn’t really know what a stitch looked like properly- again, it’s easier to see the stitches when making animals. And far less to count! I fixed this by using stitch markers (well, safety pins) to help keep track.

The most ridiculous thing I did when making this was to get the foundation end and the bit I was working on end mixed up when I came back to it after putting it down, because they both were pink at this point. So instead of ripping out the pink bit I’d just worked but added lots of stitches to by accident, I actually ended up pulling out the foundation chain. Which is a massive problem because then everything just unravels! I didn’t actually realise I’d done it until I started working on my next blanket, so goodness knows how I managed to fix it! I remember being really confused, but since I used to make pretty big errors knitting, I threaded the stitches to secure them with a piece of pink wool and then carried on working. You can only see where I did it if you really look hard or know where it is, so I’m happy with that in the end. Plus my niece doesn’t seem to mind!

It’s pretty big for a baby blanket, especially as she’s particularly tiny so I’ll probably make it smaller if I make another baby blanket. It took me a week to make.

The next blanket I did was also by Attic 24 called the neat wave (I think anyway). I spend a lot of days on the sofa under a blanket so decided that I’d mind less about being ill if I had a nice colourful blanket. I picked the colours because we have a striped chair in the living room with similar ones. And this time I followed a colour order, because the wave pattern makes more sense if the colours repeat regularly too. Again, I wasn’t very good at chaining and the pattern took a bit of getting used to. I put stitch markers every 25 stitches along the foundation chain, which also had the added bonus of meaning I couldn’t accidentally rip out the foundation chain! I did a practice swatch first, like the author recommended, so that I could get used to the pattern, but I still found it pretty difficult to work out what the different stitches looked like, so spent a lot of time counting or getting to the end of the row and realising I’d gone wrong. What I learnt from this blanket is that a lot of the time when you’ve gone wrong, it’s usually because you’ve made a mistake in the row below but hadn’t noticed until you tried to make the next row of pattern fit.

It’s pretty big but I like being able to fit under it without my feet poking out. I made it in summer though, which meant I couldn’t really work on it during the day because it was too hot with it on my lap! So this one took me about 6 weeks but I made other things at the same time.

My current blanket is also Attic 24 and is a ripple blanket. The pattern is slightly easier but also I now know what the different stitches look like so don’t just have to pull it out to the start of the row, I can actually tell where I’ve made a mistake! And also I know about the error in the row below thing, so check that too. I’m much better at chaining, and, although I seem to have lost one stitch at one end, both edges are currently really straight. I’m only making this one at night time when I can’t sleep, so progress varies on how well I’m sleeping! So far I’ve been doing it for about 2 and a half weeks.

This one is to keep me warm when I go out in the wheelchair over winter. It’s really, really cold sitting because you’re obviously not walking which is what warms most people up. I’m aiming for it to be longer than it is wide, so that I can double it over on my lap or pull it up to my ears if its particularly cold! I picked the colours partly through practical reasons and partly because I just liked them. From a practical view, the blanket is going to be outside so likely to be dropped on the floor or rained on. So dark colours show dirt less!

I like having a blanket to do at night time because the repetitiveness of it helps me switch off. Now that I know what I’m doing and don’t make as many mistakes! Once I’ve finished this one, I shall have to find someone else to make a blanket for!

Crochet & Mindfulness

I started knitting when I had to have a long time off work because my asthma was really unstable. I couldn’t walk around my house without numerous doses of ventolin and steroids a day, let alone teach music. But my brain was fine. It wasn’t like feeling poorly where all you want to do is watch daytime tv and snooze on the sofa. I was slowly being driven mad and getting really bored.

So I taught myself to knit so I had something to do while watching hours of daytime tv. And now, I also crochet. Difference being is my brain isn’t as ok now- now I have brain fog and concentration issues but I work around that. Crocheting also has the added bonus that I can do it while lying down!

One of the big things with my Adrenal Insufficiency is that I can get incredibly anxious over not a lot. And then I can’t sleep, which feeds the anxiety…. so I find crocheting gives me something to slow my anxious brain but isn’t too taxing, as long as I pick the right project. It means I have lots of things on the go constantly because then I can pick and choose.

Like I said, usually I crochet with the tv on. But more recently I’ve been trying something new. I’ve been practising mindfulness and meditation to help my anxiety anyway, but I thought why not combine two things I love doing?

Nowadays, we don’t really approach many things mindfully. We constantly have our phones out, or listen to music while walking or eat and watch TV. We don’t actually really ever settle to do one task and get absorbed fully in it. Our brains are constantly thinking of the next thing, and we don’t really enjoy being in the moment.

So crocheting mindfully means not doing it with the tv on. I’ve been doing it two ways: one way is where I approach it like meditation, where I concentrate solely on what I’m doing (more on that in a minute), or the other is where I want to give myself space to think about something specific but without getting emotionally involved in it e.g. My hands are busy which lets me see the facts rather than the emotion attached to the facts, which is what makes me anxious. If I feel overwhelmed, I switch to just the mindfulness option.

What does it actually mean though? It’s:

– paying attention to each stitch. If there’s a pattern or rhythm to it, I say the stitches in my head like Dec, single crochet, double crochet… it helps if it’s repetitive and I don’t have to consult a pattern

– looking at the colours. I love the blanket I’m working on (they’re best for mindfulness practice). So I like looking at the colours blending.

– I also like the feel of my current yarn. It’s really soft but chunky so it’s easy to hold but really tactile.

– I sometimes put on calming music from my Calm meditation app or definitely have my white noise machine on. So I tune into those sounds

– I try to match my breathing to what I’m doing. It kind of makes it musical if you’ve got a steady rhythm going and get your breathing to coordinate

– it’s about not getting frustrated if you make a mistake and have to rip it out. I’m not doing it to make progress in my project (well I kind of am too), I’m doing it because I love crocheting

– it doesn’t matter if I finish in the middle of a row. Another reason why blankets are good because you can pick them up and put them down again easily. It’s about removing the need to set targets and time limits, and just ‘being’.

There’s something a bit hypnotic about it. Some days I’m better at keeping my mind on the task, others my mind keeps wandering and I keep having to bring myself back. But that’s ok, because I’m recognising my mind wandering, which is almost as important as staying focussed is. I still like crocheting in front of the tv, but I also quite like the time I get to just crochet because I want to enjoy that specific time.

Being Kind to Myself

I’m a broken record I know, but I bloody hate tapering from stress dose to baseline. In one of my endocrine crying meltdowns which come from tapering last week I sobbed at my husband that I feel like all I do is taper for about 90% of my life because no sooner have I got to baseline, I get sick and have to stress dose again.

Tapering for me is really, really hard. My endo tells me it’s because I’m super sensitive to any changes to my dose, more so than the average person with adrenal insufficiency. So 2.5mg doesn’t impact on most people that much, but makes me feel like a heroin addict going through early withdrawal. Or like you’ve got flu. But for 90% of my life on top of the already terrible symptoms I have from having adrenal insufficiency in the first place. It’s not just physical symptoms, the mental ones which come with it are just as bad.

Tapering involves lowering your cortisol level through reducing your steroid dose. So you’re essentially gradually exposing yourself to low cortisol symptoms to try and get your body used to the baseline level you should be on. Low cortisol can make you incredibly anxious, depressed, guilty feeling, obsessive, suicidal, paranoid… It alters your mood.

One thing I get really, really stressed about when tapering is my diet. I follow a low carb diet to try to help my symptoms. But my body responds to low cortisol through tapering by making me eat every hour. I’m not hungry necessarily, I *need* to eat, otherwise I faint or end up in hospital. It’s a long story, but basically if I don’t eat what my body needs, even if it’s a temporary fix, I end up in hospital or back on a double dose- it’s lacking energy from missing cortisol, so it panics and makes me need to eat. But obviously eating so much makes me put on weight which doesn’t help my endocrine disorders. Which wouldn’t be a problem if it was only a few days a month, but because I spend so much time tapering, it’s actually a big problem.

This is further compounded by the fact that I had a very useless endo who told me my adrenal insufficiency was all in my head and I should stop eating because that was just me making excuses. Now if you know me, I do not make excuses. I’m about as stubborn as they come and lack of willpower or resilience is not me.

So I usually spend my time tapering arguing with myself as to whether I should be eating, what I should be eating, panicking that I’ll put on weight, which then uses up more cortisol, which causes more physical and mental symptoms, which makes me feel worse, which means I need to eat more. However, this time, for some reason, I’ve been feeling less guilty about it. If I’ve needed to eat, I’ve eaten, even if it means eating carbs. Because I usually feel really nauseous and have a really terrible stomach ache when tapering, sometimes I can only really stomach coke and ready salted crisps. Which isn’t healthy, but this time I seemed to have figured that coke and crisps is better than coma or death.

Maybe it’s my new endo, or finally the counselling I’ve had since that endo tried to kill me is kicking in, but I’m realising that I’m 3 and a half years into diagnosis and my endo team still can’t figure me out. If they can’t with all their fancy professor titles and combined PHDs then how can they blame me if I eat a packet of crisps to try to avoid a hospital admission? Yeah it’s not a long term solution and it doesn’t help with weight gain, but equally, they haven’t come up with anything better yet. It’s not like I’m an unhealthy person- I’ve done everything they tell me to, even when it makes me feel truly terrible. Like reducing my steroid dose- I feel magic in comparison on even just a slight increase of what I’m on now, which I could so easily do if I wanted to, but I don’t because they don’t want me to.

This time I’ve been a lot more kind to myself and it’s made it all a bit more bearable. Hopefully I can keep this up for future times!

What I learnt from ‘say yes to the dress’

I’m putting it out there that if I ever resort to watching Jeremy Kyle, someone needs to host an intervention for me!

The problem with being home and binge watching TV series is that too much of some programmes can cause you to have an existential crisis, think you’re being stalked or about to be murderer all the time, or makes you start talking in olde English depending on the period drama. I did particularly like the heavily Spanish-accented male voice that started narrating my life after I watched back to back Jane the Virgin though!

Anyway, so I found the TLC channel which basically has Say Yes to the Dress and Cake Boss on repeat. Amazing. I hadn’t watched Say Yes before because I assumed it was a bunch of shallow, materialistic girls who have way too much money to spend shopping for wedding dresses. Which it sometimes is, but it got me thinking. And the main thing that came out of all of my avid TV viewing, is that not an awful lot of what we see is actually about the dress. The dress is just a vehicle for a bigger picture.

Everyone, even the most seemingly confident brides, is looking for approval from someone. Otherwise why do they bother taking anyone to the appointment? And the more people they have, the more they appear to like to be in the spotlight, the more they actually need that validation and approval. You can see it in their faces when they think they like something and someone disagrees. They don’t know what to do.

Aside from approval, the wedding or the wedding dress has some kind of symbolism that doesn’t have anything to do with their fiance or wedding. Some have medical stories where wearing a dress causes body image problems or signifies the end of something. Others don’t have family members who’d like to see them in the dress because they’ve died. One got ridiculously upset because her mum didn’t like the dress and burst into tears and it turned out that what looked like a stroppy tantrum from a shallow bride not getting what she wanted on the surface was actually because she’d spent years as a teenager being belittled by her mum about everything and finally thought she’d got to a place where she knew who she was as a person and didn’t need her mum’s approval and it turned out it still had a massive impact on her. She’d taken her mum to the appointment to be the bigger person but she hadn’t quite closed all of the anxiety she felt about it off despite therapy.

So what have I learnt? That everyone needs approval, even the most confident of people. In fact, the most confident often need that validation more. And that it’s ok to ask for approval or validation in certain circumstances, like when you’re trying on your wedding dress or showcasing something or making yourself feel vulnerable. If people aren’t willing to boost your confidence or say they’re proud of you when you’re doing something specific, like shopping for your wedding dress, that says a lot more about them and their insecurities than it does about you.

I think it’s really easy to project fears and anxieties onto even experiences which should be happy. Your mind can’t really handle the really deep rooted negative stuff by itself, but it can get irrationally angry about surface level things. I temporarily lost my scarf at a funeral once and all I could think about at the start of the service was ‘I can’t believe I lost my scarf’. And then I got really stressed because I was thinking about having lost my scarf rather than the person we’d lost and were burying! But it’s the same thing as people eating wedding dress consultants alive because their dress isn’t quite perfect. The mind can’t handle the hard stuff, but it knows how to let it all out on the not so important metaphors of life.

Don’t judge a book by its cover (or wedding dress). Just because you can’t see what’s going on immediately doesn’t mean that the reaction is coming from a shallow place, it’s probably a lot deeper a problem than you realise. It’s just a shame that some of these brides are spending $5k upwards to learn this!

Please don’t make decisions for me

I’m pretty sure that 90% of the time, people I know who come out with phrases like ‘I just assumed that…’ say them with good intentions. E.g.

I assumed you wouldn’t be able to do X

I didn’t think you’d want to X

I know that you find X difficult so I didn’t ask you about Y.

However. Maybe it’s because I studied languages at university so over analyse everything, perhaps I’m overly paranoid or maybe it’s something else entirely, but anything that has some kind of reference to the past tense rather than a continuous or future one says to me that someone has already made a decision for me. And I don’t like that, even if the intentions are entirely good.

It’s for 2 reasons:

  1. I shouldn’t be excluded from things because I have a chronic illness which limits my physical activities. I should still be invited to things and it’s my decision as to whether I join in or not
  2. It has everything to do with the way I view myself and my illness.

Thinking about point 1: I’m not an idiot. I know what my limitations are and I can come up with solutions, ask questions or know when to bow out and not take part. So extending an invitation rather than coming out with ‘I assumed that…’ is much better because it shows me that people still want me around. Because, when you’re chronically ill, there are a lot of fair weather people who ditch you so you do get a complex about it.

But then another thing to consider is that unless it’s an event like a hen party or baby shower where the focus is on one individual, it still should be my decision as to whether or not I join in even if it is something a bit out of my reach and I’d be pushing things slightly. If people genuinely want to spend time with me, it shouldn’t be an issue if I get it wrong and need some help during or afterwards. Because everyone pushes the boundaries and does things they know they shouldn’t because they want to feel alive- who’s been ill enough to need someone to help them to bed while throwing up after a night out because they drank too much? Or got stranded somewhere because they didn’t look up the train times properly? I’m not unreasonable or impractical about my illness; if I can’t work out a way to take part and I think I might burden people in any way, I’ll likely not take part. I’m already super paranoid about that. But that doesn’t mean the invitation should never be extended.

Don’t get me wrong, it’s great when people are able to think about how I can do things or understand my condition. But this is where the way I feel about it is important, the second point I made. If you tell me a list of reasons why I can’t do something that you’ve assumed based on what you know about me, even if genuine thought has gone into it, it comes across exactly the same as someone who is trying to exclude me from things. Particularly if the conversation is over text message. Because the words and language is exactly the same. So rather than feeling positive about outings or interactions, it causes a lot of anxiety and makes me hate the fact that I feel like I’m missing out and compromising because of illness. It puts up a wall between me getting out and trying to make the most of what I’ve got and feeling like I can’t say if I don’t feel well or need some help when we do go out. And I’m more likely to isolate myself which makes it worse. Me making a decision is me taking control of my life. That gets taken away if someone makes assumptions and then tells me what they’ve assumed.

Yeah you could say ‘you need to get over that, it’s all in your head’ but it’s very much a bigger picture thing. Because keeping alive in general is quite difficult sometimes, anything I can do to alleviate anything makes a difference. There’s a whole lot of emotions and feelings that come with having a long term illness which you can’t possibly contain 24/7, and not wanting to be a burden is one of the more tricky ones because it involves having to rationalise other people as well as your own thoughts. It’s hard work. And, like I said, you’re already having to work out hard lessons about people who actually don’t care about you, so how do you tell the difference if the use of language is the same?

So if you have a friend with a chronic illness who you genuinely care about and just want to show you’ve thought about them when socialising, please maybe think about the following:

  • Try to avoid assumptions and guess work. Instead of ‘I assumed…’ saying things like ‘I’m just checking this still applies…’ or ask a direct question
  • Explain what’s going on and ask what the other person thinks. I don’t think any of us have any issue with honesty or open discussions, it’s the cloak and dagger not talking about the elephant in the room cliches that are annoying (see what I did there 😉 )
  • Instead of saying ‘you won’t be able to do X’, say ‘you’d be able to do X’. It’s a really minor change but it makes a hell of a difference
  • If it’s really impossible for someone to do something e.g. Skydiving and you know fine well there’s not a chance in hell that they’d be able to do it, say so. Say ‘I’d really love it if you were able to do it with me but obviously you can’t’. Because there’s nothing worse than not having been told about something happening and then seeing it on Facebook when a simple one line sentence would have made a lot of difference self esteem wise.
  • If you’ve gone to the effort to check out access or dietary requirements but there are other bits which the person definitely wouldn’t be able to manage, say so. We really appreciate people thinking of us, but if you only tell us what we can’t do or lead with it, it makes us focus on the negatives rather than the efforts you’ve made. And it can sometimes seem like you’re trying to make a token gesture but don’t actually want us to be involved in any of it if you lead with the can’ts rather than the cans.

It’s not really just people who have chronic illnesses who are prone to paranoid feelings about being excluded from things. Everyone gets paranoid when they feel excluded, it’s just the likelihood of being excluded increases when you have a chronic illness. And like I said, most people are practical and realistic about their illnesses, and won’t make unreasonable demands. But feeling included is really, really important.

Ps you also get some perks like good parking, free entry and discounts if you go out with me too 😉

Clothes Shopping

I hate clothes shopping. I used to like it, but it’s now up at the top of the list of pretty much impossible tasks for me to do.

Reasons why I hate it:

  1. I don’t like anything about my body because I’ve doubled in weight the last few years (literally). That in itself makes the whole experience an anxious and depressing one. I really hate looking in the mirror.
  2. I don’t really know what size I am because the sizes between different shops get even weirder the bigger they get
  3. You can’t actually find big enough clothes in every shop, so there isn’t always a ‘I need the next size up’ option.
  4. The shops I do fit into tend to be more expensive
  5. I’m not very proportionate because some of my weight is water weight so it ‘moves’ depending on what’s going on that day. Joints swell up when they feel like it.
  6. It’s bloody hard work. It takes me ages to try anything on because it’s so tiring and I only have limited trying on capacity. And I have to try things on because of the sizing issue because I don’t want to have to make a repeat trip!
  7. The only way I can do it is if I use the wheelchair but it makes it difficult to look at anything. Plus I can’t hold my arms in the position needed to look through racks of clothes
  8. There’s then a whole other set of issues that come with using the wheelchair- last time I went I got asked if I needed my mum to come in the changing room with me to help, even though I’d stood up and talked to the sales assistant myself by that point. Shops are not wheelchair friendly.
  9. I don’t earn money so feel like I shouldn’t be buying clothes
  10. I have to be careful of fabrics and fits because of skin sensitivities and pain
  11. I also have to think about which fabrics are likely to show how much I sweat because I have random hot flashes (so glamorous)
  12. It takes me a few days to recover from the experience

Sometimes I do online shopping but that doesn’t always work either- I still can’t figure out sizing, I can’t assess different fabrics, someone still has to help me because I can’t do online shopping myself and the whole thing gets dragged out into days rather than hours which doesn’t do much for my self esteem.

I’ve pretty much avoided buying clothes for about 2 years. However, these clothes were wearing out because I’ve been wearing the same 2 pairs of jeans for 2 years and my weight keeps changing. So me and my mum decided to bite the bullet and go shopping when she visited.

I decided that stretchy short sleeved dress/tunic things and leggings were the way forward because then if I put on weight again, there’s a bit of wiggle room but also it doesn’t matter if I lose weight. And short sleeves because I don’t really ever feel cold, even in winter.

It was as expected- a slow and frustrating process but also a successful one- we found 2 dresses! Hooray! My mum also kindly bought me some new boots which I needed, but shoe shopping is just as traumatic as clothes shopping so I’ve also been avoiding that. And shoes are expensive.

It’s been a long time since I bought things which were ‘nice’ and didn’t serve some kind of practical purpose. Mostly my fault because I avoided clothes shopping like the plague for 2 years. I spend most of my days in jogging bottoms and t shirts because it’s more comfortable but actually having new clothes that fit has already made a difference to my mental health. There’s something to be said for having a choice of clothes rather than just reverting to the same things. I actually felt a bit more like a human again because my clothes aren’t 2 years old. My mum was patient so I didn’t feel like I just had to pick things fast and settle for something that wasn’t great. Which means that when I do get dressed now and leave the house I’m not instantly reminded of how much I’ve had to compromise on because of my illness and get to actually feel human and normal in a tiny way.

One of the other main stumbling blocks is money. How can I justify spending money on nice clothes, even if it does help my mental health, when I don’t earn money and don’t have excess any to spend? I can’t. So I’ve had a bit of a confidence boost for now but it’s not like I can go out and buy another dress the next time I’m feeling low about my image.

I’m not sure this makes sense to anyone except people who are in a similar position to me. Self esteem and image are things which other people tend to dismiss as not being very important when it comes to being ill but it’s actually so important in how you think about yourself and your illness. Why does anyone buy anything if image and self worth aren’t important? Physically and mentally, shopping for clothes is hard because of my condition, but in having done so, I feel a bit like I’ve fought back a bit. This is where some people would say something ‘inspirational’ about not letting their illness ‘define’ them but I won’t say that (another blog post for another day). It’s a lot more complicated than just buying new clothes, but I was surprised by how much it helped my mood this week.