Uncertainty (& Mountain Lions)

This week has pissed me off. My BP is high (155/107 last reading, if you’re interested) which is not a good sign. It’s higher than the last time I was admitted to hospital. Except I don’t feel as ill like I did last time, I mostly feel fine, so there’s not a lot of point going to hospital. Something’s going on illness wise, I just don’t know what it is (virus?). So I’m ‘stress dosing by numbers’ and kind of making it up as I go along with the help of a nurse friend. So I’m pissed off because my body is having some kind of internal argument, won’t indicate to me what the deal is so I can do something properly about it, but equally I don’t want to accidentally give myself an adrenal crisis. So I feel like I’m doing a bit of a dance with a mountain lion which may decide to eat me or could walk away and look for something more tasty. Yesterday I was confident I got my dosing right at lunchtime and by teatime I needed help sitting up to get my jumper off, needed supervision and was incapable of working out myself what medication I needed to take to rectify it. The lion tried to eat me but I temporarily fought it away with a big stick. Although it ate part of my stick in the process.

I read this a while ago but it seems particularly relevant this week with my illness which doesn’t make me feel ill but requires me to stress dose:

The only certain thing in life is that life is uncertain.

Plan all you want, it doesn’t mean it’ll happen. And if you know me, you’ll know I love plans and being in control, so it’s a scary prospect! If you think about it, everything in life is uncertain, even the good things. Except, as humans, we assume that the things which happen to us which are positive are somehow planned and therefore expected life milestones. But really, falling in love, having children and succeeding in careers are just as uncertain as losing a family member suddenly, becoming ill or getting divorced. Your partner could be a mad axe murderer or you might never meet anyone, you might be infertile or your company could go bust. When things are going well in life we take credit for our amazing choices and decisions, and when we hit hard points we say it came out of the blue and it was unexpected. But actually, both the positives and negatives that we experience or face are uncertain.

Some people face more uncertainty than others. My uncertainty comes on a daily basis, things change pretty quickly because of the nature of my condition. Most people don’t have to think ‘if I do that will it kill me?‘ as routine. And, because my body literally does the opposite of what its meant to and confuses doctors, the future is even more uncertain. Which is very frustrating, l’m not going to lie. I could get a stomach bug and that could kill me because I have a volatile condition. But equally I could get run over by a bus while crossing the road which could happen to anyone.

The difference between me and other people is that I know that everything is uncertain, even the positive things other people ‘plan’ for. I haven’t accepted it yet because I’m still finding it irritating, but I’m trying. I know the mountain lions are circling in the woods near my clearing where I’m camping, but I’m equipping myself with big sticks, lighting a fire and arming a shotgun (side note, my husband will find that funny since I really would be useless with a gun!). If I don’t need my weapons because the uncertain things turn out to be positive, great, but if not, I’m equipped. There’s a balance to be found though: too much planning and you become one of those people who have a bunker in the basement designed to withstand a nuclear war, whereas all you might need is a big stick.

Situations change. Plans fall through. Tragedies happen. Equally, people win the lottery or survive catastrophic accidents. Both are uncertainties, but we spend a lot of time subconsciously reassuring ourselves that we’re somehow immune from bad uncertain things and looking at other people’s lives and thinking ‘at least that didn’t happen to me‘. And then if and when things do happen, it comes as a big shock. The mountain lions come, but rather than being equipped to deal with them, lots of people feel like they’re hanging off a cliff edge while also trying to beat the lion off with a stick.

I don’t know why I’ve specifically picked mountain lions over normal lions, by the way. I was uncertain about what analogy I would use when I started writing, but it’s an uncertainty that doesn’t bother me. No stick, fire or gun required. Why’s it so hard to not be bothered about other unknown things then?

I can’t hide behind the positive uncertain things and claim I’m making plans like everyone else does because everything’s too uncertain. Lots of people my age are having babies and are making positive plans about their future with the assumption that they’ll be able to get pregnant and be great parents, but, actually, that’s also uncertain: some super healthy people can’t conceive for no reason or people get to 36 weeks pregnant and their babies die.

Clearly my weapons against the mountain lions are metaphorical, as are the lions, but what I am doing is equipping myself to think differently. In actual fact, my (and everyone else’s) entire life has been uncertain up until now and it will continue to be uncertain. Some people comfort themselves with meticulous planning or things like religion, trying to live a pre-destined path. But things still change and they still have to go back to their plans and revise them or ask their God to help them find a new path.

Good or bad everything is uncertain. There are lots of lions floating around in the woods scaring me with their growls, but I know they’re there and I’m hoping that I can maybe train them to be friendly when they eventually arrive. They’re just big cats right? And if not, I’ll continue beating them off with my fire and big stick.

Image: Mom Junction Free Colouring Pages

Things I Miss from my ‘Old’ Life

This week, someone who didn’t know me pre-adrenal insufficiency diagnosis asked me what I used to be like. I said ‘more fun’ as my immediate response, but then we talked about the things I miss about my ‘old’ life. Most of them I’ll probably never be able to do again, and while there are positive things about my current life, it’s not through my own choosing that I’ve had to give up these things- it’s 2 years this week since I was diagnosed. Very few people actually talk about everything I’ve lost with me, most people find it an uncomfortable subject for them. Here are some things I miss from ‘before’:

  • playing music This is the massive one for me. I used to sing, play clarinet, try to learn other instruments, play piano… It was literally my life. I can’t do anything which requires controlled breathing and I can’t concentrate enough to play piano. Plus playing piano raises my pain.
  • teaching I was gutted to have to stop work. I’d always wanted to be a teacher my whole life.
  • independence my husband and my friends help me with everything. I can’t leave the house by myself.
  • walking I used to walk everywhere. I have a blue badge now and keep walking to an absolute minimum.
  • hiking I loved climbing mountains. The higher the better, I love the views at the top.
  • running I used to run 10k a week. In fact, I miss most sports.
  • alcohol I didn’t drink a lot of alcohol, but I did like a glass of wine with dinner when we went out. I can’t tolerate any alcohol now.
  • being a size 8/10 I’m not my current size through choice or laziness.
  • choosing what to eat I’m super conscious about carb and sugar content in what I eat. Some foods I can’t eat. I don’t really see eating as a ‘fun’ thing at the moment, more as another medication.
  • spontaneity everything is in a routine because it has to be. I have to get up at a set time, take tablets at a set time, eat my meals at a set time. I can’t just drop everything and go ‘I’m going out to do this instead’.
  • sleeping properly I haven’t slept through the night in years. An average night’s sleep is about 4 hours, usually in broken bits.
  • I feel like I have to be permanently paying attention to my condition, and it’s a lot of pressure. It’s not a case of ‘take your tablets and it’ll be fine 90% of the time’, it requires a lot of work. A friend and my husband help make though.
  • travelling takes some preparation. The last flight I took resulted in a hospital trip. Even UK trips still require a lot of forward planning.
  • shopping I liked browsing shops, especially for christmas presents. I can’t really do it v easily now.
  • showering every day I really hate not doing this every day, but I physically can’t manage it.
  • cooking/baking I can’t cope with the heat and following a recipe. It doesn’t end well. Last time I used the oven by myself, I had to call an ambulance.
  • sunshine heat causes me massive problems. I miss having a bath too for the same reason.
  • my sense of humour bits of it are still there, but it takes way too much energy being the person I used to be most days.
  • being pain and fatigue free. I also feel dizzy all of the time.

There are likely other things, but that’s what I was talking about this week when I was asked. I don’t like the idea of an entirely negative blog post, so here are some things I’ve ‘discovered’ or like doing since diagnosis:

  • writing a blog If I can’t play music, I can be creative this way.
  • crafts I’m currently making christmas cards with sequins. It might take me a long time, but it’s easy to put down and pick up again.
  • colouring 
  • knitting I didn’t do this before I was ill. I love doing it now
  • great friends I really enjoy spending time with my close friends. I enjoyed it before too, but I appreciate the time with them a lot more now.
  • eating dessert I don’t eat sweet things v often anymore, but when I do they taste so much better than before!
  • meditation 
  • listening to music or watching performances

There are definitely positives for my current life. But I do miss some things from before.

Hydrocortisone Out of Stock

Four really, really stressful words to be told. It’s a bit like being told ‘I know you can’t breathe, but we’re taking your oxygen away from you’. No Hydrocortisone = death, pretty quickly.

It’s been a little bit stressful the past few weeks trying to sort this. There’s been a supply problem for Hydrocortisone in the UK recently, lots of patients have had issues. I don’t know the ins and the outs fully, and I’ve been told so many different things by different people, but the long and short of it is some pharmaceutical companies bought each other out and some types/brands became unavailable. The now already limited brands aren’t stocked by every wholesaler distributing to pharmacies, meaning you can’t just go to any pharmacy and get the script, you have to work out who supplies your pharmacy to make sure you’re getting the right brand. It also comes down to money- money can be made if a patient accepts the generic (cheapest) brand, so I’m told.

It gets more complicated because the NHS will only fund 10mg tablets. 2.5 and 5 mg tablets are manufactured but the NHS won’t pay for them, which means they’re not available. However, as adrenal insufficiency patients, we tend to dose in 2.5mg and 5mg multiples as well as 10mg, meaning we have to split the 10mg tablets in half or quarters. The problem is, only a couple of brands of Hydrocortisone are licensed to be split in half: the pharmaceutical company of the generic brand available everywhere and charities associated with AI have categorically said that this generic brand should not be given to us to treat AI for less than 10mg because the compound is not evenly distributed through the tablet meaning they can’t guarantee we’d be getting the right dose when split. And, unluckily for us, it was some of the brands which you can split in half which vanished off the market.

I rang around a few pharmacies and found out the different wholesalers and still no Hydrocortisone in stock. I’ve made ‘friends’ with the pharmacist over the road and he managed to get a box (30 tablets) of the brand I need in with some difficulty. Then we worked out how long I’d have left if I used the generic brand for my multiples of 10mg and the other brand for the 5mg and 2.5mg (nothing like additional maths to add to the already complicated maths of your condition!) and he said he’d ‘work on it’. We also had a bit of ‘time’ because I’d been told to stress dose by the hospital, which helpfully meant that all my doses were in multiples of 10mg for a couple of weeks! After much digging around on his part, we found out that, for now, one pharmaceutical company bought out another company and while they’ve got a different name on the box, the tablets inside are the original brand. Except this might also change in the future, so for now I have to open every packet I’m given before accepting it to make sure the tablets are still the same and hasn’t changed. A very minor convenience in comparison to not having any!

That pharmacist was great. I very much appreciated his efforts to make sure I got what I needed!

Dreams

I have some really weird dreams. Like really vivid, sometimes nightmare-like ones. Combine that with the fact I don’t sleep well and need to get up in the night to eat, sleeping is a bit complicated! 

I don’t sleep well because my cortisol coverage is lowest overnight. Everyone’s cortisol naturally goes down at night, but if your body needs it (stress, illness, bad day), it would still continue making it in the background while you’re asleep. My last dose is at 17.30 and my next dose at 8.30 so that’s a long time to go without. The body’s then supposed to start making it again at around 2-3am ready for you to get up in the morning, which mine obviously doesn’t.

Which is where the getting up to eat and not sleeping thing occurs. When my body starts to struggle because it’s lacking cortisol, it wakes me up with adrenaline so that I don’t die in my sleep, and I get hypoglycaemic symptoms, which mean I need to eat. 

The title of this blog is ‘dreams’ so you might be wondering why I’m explaining that. When you have dreams, you sometimes wake up feeling really stressed or angry or sad for no reason. You can’t always remember why, but your body has an emotional response to it, which means your body makes cortisol to respond to it. So when I have weird dreams, my body wants cortisol which it doesn’t have, so it wakes me up because of the reasons above with an almost electric shock reaction, sweating, shaking and a massive wave of nausea. It’s not pleasant. 

This happens at least once a night,  usually closer to two or three times. Sometimes I can avoid eating (because night time eating obviously isn’t good for me if I don’t absolutely have to), sometimes I can’t. 

I’m working on trying not to have dreams because I think that might help a bit with sleep. It’s a bit of a cycle though because the less sleep I get, the less cortisol I have in reserve, which means less ability for my body to be able to cope with the dreams! So I’m currently keeping a dream journal and working on meditation and other strategies in the day. Fingers crossed! 

Life Performance

In theatre, to be a truly good performer, you have to commit fully to your role. You can’t be passive, it takes all of your concentration and you need to be consistent. Otherwise you’d get fired. If you do a run of shows, it might be the same thing every night, but a new audience is seeing it for the first time so you have to give the same dedication and commitment as if it were your first time performing it. If it goes a bit wrong one night you can learn from the experience and make sure it doesn’t happen again the following night.

Except we don’t have the same attitude when it comes to life. Most of us don’t commit fully to it and live passively most days. We might have repeat Mondays, Tuesdays etc but we don’t get do-overs of the exact same day where we can do it again but better. We get into a routine, things pass us by because we’re looking elsewhere, or we’re so absorbed in our thoughts that they stop us from actually living the moment that’s happening. We assume that we have a good run of performances ahead of us, but we don’t actually know for sure. So why aren’t we committing fully to it?

Tim Minchin had the dream of writing Matilda the Musical from a young age. He checked out what he needed to do to write it long before he became famous. You can see his absolute joy about the show whenever he talks about it or performs elements of it, even though it’s been running a few years. People want specific things out of life, but never seem satisfied regardless of how they come about. Couples try desperately for a baby and the complain about sleepless nights or someone works really hard for a promotion and realises it’s not all it’s cracked up to be when they get there. You should be allowed to complain if things don’t go the way you want, but there’s a difference between someone paying a fortune for a theatre ticket to have been misled and find it’s standing room only versus someone in a box complaining that they’re a bit chilly and making demands about the heating: you have a baby and a job. The people who are made to stand have been given a raw deal, but if you can do something about making changes to your life rather than being passive, do that rather than expecting everyone else to fix it for you: put a jumper on if you’re cold. Or take a look around and think ‘actually I’ve got it pretty good, it might not be perfect, but it’s still better than standing.’

You turn up to the theatre and you expect great things from the show. You’ve paid to be there, everyone has, so you expect the same standard as everyone else. So what if the lights aren’t working properly and everyone sings out of tune? You’d feel cheated and want your money back. Or a do-over. It’s the same with life, things go wrong and you feel cheated. Everyone else got to watch a good performance, why shouldn’t you? Even the people who were standing still managed to see good theatre, even if it wasn’t as comfortable as they wanted it to be. How is it fair that you ended up with the performance with all the technical hitches?

There’s a difference between knowing what you’re paying for, like a restricted view due to a pillar and being determined to make the most of it anyway, versus paying for a good seat and a lighting rig dropping on your head. But I’m a performer so I like performance analogies. So, being long-term sick, I feel a bit like I’ve done my performance training, I’ve jumped through the audition hoops and I’ve been given the lead in a play, we’re ready to go, but right after the tech run, the opening night gets pushed back because of some administrative, faffy detail that has absolutely nothing to do with what’s supposed to be going on on-stage. I’m watching the people that I studied with go onto perform their opening nights and continue with their runs in different theatres, occasionally with technical hitches, but they quickly recover and continue to make themselves into stars. Every now and then, something completely out of the blue happens, like a theatre burns down, but the public don’t mind that because it’s a tragedy, and we have to ‘keep calm and carry on fighting’ and the show re-opens and is even more spectacular, with the added praise of how they ‘still performed in light of everything else going on’. Whereas my theatre is facing criticism after criticism because no-one knows what’s going on, it doesn’t make any sense, people are accusing us of lying and there’s doubts as to whether there’s actually going to be a show. The audience gives in waiting, they ask for refunds and go elsewhere. Some of the cast even quit, so eventually we decide that the show must go on and we do it anyway. And it’s not great, the audience has to stand, the cast sing out of tune and the lights don’t work. So the audience moans about that too. The crew knew it was going to be a bad idea because trying to fix something while there’s a performance going on on-stage is so much more tricky than fixing something when the theatre’s closed up and you’ve got everyone co-operating.

So I’m watching people get on with their lives, ‘waiting’ to see if I get the chance to ‘perform’. Some of my friends face bereavements, cancers, divorces or relationship breakdowns, but other people have an easier time understanding and supporting people through those than they do with a theatre with a ‘Opening Night Date TBC’ confirmed sign on the door. I feel like I should give people some positive news when they ask how rehearsals are going, but I can’t really and I don’t want to get people’s hopes up. People lose interest hearing the same reply- that doesn’t mean that I’m not rehearsing just as hard as other people are in other theatres, but sometimes my efforts go unrecognised. In some ways it would be easier if the theatre had gone down in flames, because then at least we’d all know where we stand and it wouldn’t be a long drawn out process for years. But who actually wants something to burn down? I want to ‘get on with my life’ and achieve the Oscars that everyone else seems to be winning, but if I do that the Doctors who make up my crew mates have a much harder job on their hands, or I might make it even worse and have several lighting rigs drop at once on our heads. It doesn’t seem to matter how much is invested in it, the performance doesn’t ever get off the ground.

What should I do? I came to a conclusion that the people winning Oscars, especially those who were awarded them ‘too easily’ or too early in their careers might not be committing fully to their performance roles and will get passive about their glittering careers. They might be getting arrogant about their fame and cease to realise how important it is to give it your all every night- they’re becoming divas and making stupid demands as to what should be in their dressing rooms. They’re waiting for something too, they just don’t actually know what they’re waiting for and so they’re missing out on even more than I am. So I’m accepting, or at least trying to, that I have to sit behind a pillar for now with a restricted view because I can’t afford to pay for a good seat and risk a lighting rig dropping on my head. I might not be on stage, but I can commit myself fully to watching the bits I can see and not exist passively. I can see smaller details that pass other people by, appreciate littler things other people might miss and continue to admire and be happy for others and their achievements from the wings. Hopefully I’ll get a chance in the spotlight at some point in the future with minimal technical hitches. And if I don’t, I guess I’ll try to become a good theatre critic!

Photo: Google Image

Winter Illness Season

Yay! It’s the time of year where bugs are floating around everywhere and people are coughing and spluttering or being sick. Lovely. I’ve had my flu jab, so chances of me getting serious flu are minimal *touch wood*, but I can’t protect myself against stomach bugs.

Quick recap, illness is complicated with Adrenal Insufficiency. Your body needs to make more cortisol to help fight the illness, and I can’t, which means I have to replace it with my Hydrocortisone tablets. But when you start to feel ill, you don’t know how ill you’re going to be, so it’s like playing pin the tail on the donkey- I might get it right, but I’m pretty likely to get it wrong the first couple of times.

I’m really scared about being sick. I haven’t been sick since I was diagnosed. If you’re going to die from something, being sick is pretty high up the list for Adrenal Insufficiency patients. The act of vomiting is a massive stress on the body, psychologically it stresses most people out, you also can’t keep down your oral medications which are supposed to help and you lose fluids or stop taking them on board which also increases chances of Adrenal Crisis. Add in a temperature and/or diarrhoea  and it’s pretty much a guaranteed trip to the local A&E department, most likely with blue lights to get there.

I’m also one of those people who really, really can’t cope with being sick. Yes, it’s pathetic, but I deal with a lot every other day of the week, so I think being freaked out about something is allowed! My friend got a stomach bug a few hours after we’d seen him recently, which prompted my husband and I to make sure that he knew how to work my emergency injection and what oral doses he should insist on me taking. I didn’t catch it thankfully, but I did feel unsettled for a few days. Rationally I know I can’t help catch a bug if I’m going to get it, but when you’ve got an illness that can kill you pretty easily, it would be easy to start treating everyone who sneezes as potential carriers of the plague.

Unfortunately for me, I feel sick and have stomach ache a lot of the time anyway, which means I wouldn’t get a lot of ‘warning’ beforehand because feeling queasy is my normal. I randomly woke up the other night twice convinced I was going to be sick and then wasn’t. It happened a few more times but I started to ignore it, apparently that was just what was happening that night with my ‘normal’ condition. But it did make me paranoid. Having worked in schools, I’m more practical than that. If I’m going to get ill, I’m going to get ill. But being sick is one of those ones illnesses that kind of makes me feel a bit cold inside when I think about it!

Making a Happiness Jar

I stole the idea off another Twitter user, although I’m calling mine a ‘Star Jar’ because I like the rhyme. The idea is that you write down things that happen that made you happy and look back on them at a later date and remember the good and funny things. Some people do it as a New Year ritual, I’m going to look at mine whenever I’m feeling a bit fed up. It’s also good for me because I have a tendency to forget positive and fun things, and I also liked the idea of making my own since I mostly spend my days doing crafty things when I can.

To make it, I used:

  • an old Nutella Jar, washed out and label taken off. This just happens to be the thing that we (ok, I) eat the most of in our house, but any jar will do.
  • Tacky glue
  • Sequins- I used gold and silver
  • Paper
  • Brush
  • Tweezers
  • Scissors
  • Kitchen roll (I’m not the tidiest!)

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I printed out a template of a star on the paper, mostly because I can’t draw. I then stuck it to another piece of paper and cut around the two, so it was a double layer so it could carry the weight of the sequins. I decided to do this rather than using card because the jar has a curve on it, so it needed to be flexible still for when I stuck it to the jar at the end.

Starting with the point, I alternated rows of sequins with the different colours, working my way down. Each row partially overlapped the one above it and the sequin before it so there were no gaps. Make sure you work in the same direction though (I did left to right). This is where the tweezers came in handy- dipping the sequin into the glue and then positioning on the star. It sounds fiddly, but it’s not- I don’t have a steady hand and coordination isn’t my strong point, so if I can do it most people should be able to!

I left it to dry overnight and then stuck the star to the jar the next day. I used the brush to make sure the glue was evenly spread out over the star and some kitchen towel to wipe away any which squidged out the edges. The glue dries clear, but I didn’t want any thick bits showing.

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I thought about writing something on the other side, but my handwriting is shocking, so I decided to keep it simple! So I used some spare sequins and just dotted them around the sides of the jar. I did the side with the star one day and then the other side the next, so that the glue had time to dry in between.

The finished jar looked like this:

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Now time to fill it with lots of happy things!

Why I like ‘I’m a Celebrity’

I don’t really like reality TV, and I couldn’t care less about celebrities. So it’s odd that I quite like I’m a Celebrity! It’s a tv show (full name: I’m a Celebrity, Get Me Out of Here!) where celebrities are dropped in the jungle and have to complete trials usually involving creepy crawlies in order to get decent food and/or supplies. I also hate bugs. The public chooses who stays and who goes (to an extent).

November has been a bad month for me health-wise for a few years. 2013 marked the start of me getting back to back chest infections. 2014 I spent the best part of 3 weeks in hospital as an inpatient. In 2015 I got told I was ‘critically ill’ and continuing to work at that point was dangerous. 2016 *touch wood* is looking a damn sight more positive and less dramatic, albeit I’m still ill. 

And here enters I’m a celebrity. I spend a lot of time watching TV and it’s on every night. I started watching it properly when I was in hospital in 2014 for the 2 1/2 weeks. Visiting times were from 7pm-8.30pm and my husband and 2 friends faithfully came every evening and because one is a nurse, I was allowed off the ward, which I desperately needed, to go to the public (closed) canteen area, because I would still be medically supervised. But I really didn’t cope well with being left afterwards. It turned out I had an undiagnosed endocrine condition, which meant my hormones were completely haywire (imagine woman in labour kind of scale) and so being left alone caused massive emotional meltdowns. Plus the reeducation plan and diagnostic tests I was on was horrendous so I was already fragile. So visitors leaving me made me massively stressed, which, it turns out is something my body really can’t cope with since the hormone I don’t make is the stress hormone, cortisol, hence the meltdown.

My friends and my husband used to deliver a usually sobbing me back to my room and hand me over to either Mary or Sue, my lovely night nurses, who would try everything they could to settle me down before my breathing deteriorated and I needed a nebuliser. Routines are common in hospital so at 9pm we’d get given evening hot drinks and biscuits, and at 10pm was evening meds which meant I couldn’t sleep until I’d had them. So I’m a Celebrity was on when I was given a hot drink and a snack and kept me occupied until I was given my evening meds. Then there’d be the ‘after show’ discussion I could watch while trying to sleep. Once the night nurses worked out that I was watching it, they used to distract me by asking what had happened on show the night before when I was upset. I was the youngest patient on the ward by about 50 years so lots of the other patients were already asleep or didn’t need anything until the drugs round, meaning they could make time to chat to me. One healthcare, Lyn, would make me get my pjs on while she was making my drink for me and then watch me get settled in bed with the tv on because, for whatever reason, it really calmed me down focussing on it and having her keep me company. Then she’d come back at the end of the drinks round and make sure I was ok again. When I was discharged from hospital, watching the show acted as a kind of transition and gave me the ‘stability’ I needed at that point while I adjusted. 

Last year, i watched it in the morning after breakfast. I felt guilty about not being in work so it gave me something else to focus on once I’d emailed in my cover work. Both years, it helped me out because:

– I felt ‘trapped’ in hospital so I felt I really understood what the contestants were feeling regarding wanting to get out! Thankfully without the bugs…

– it gave me a routine and something else to focus on

– hospital food might not be great but at least I didn’t have to starve or eat bugs

– it gave me some kind of stability when it felt like everything was falling apart 

– it made me laugh 

– my concentration was dire, a new to me symptom, so watching something ‘easy’ helped alleviate the frustration I felt about that. 

– it gave me something ‘neutral’ to talk about which wasn’t about my own life or what was happening.

So yes, it’s trashy TV and is probably rigged, and goes against what I’d usually watch. But I like the familiarity of it 🙂 

Photo: ITV Image

The Scary Bits of Adrenal Insufficiency

The problem with the way I got diagnosed with Adrenal Insufficiency is I never had a chance to process what was going on and deal with a really life-changing, scary diagnosis in an appropriate way. I’d spent a lot of time being told by some Doctors that my problems were ‘all in my head’ and to ‘just get on with it’ which meant that when I got told what I did actually have, I felt relief rather than fear: there was actually something wrong, I’d been right to keep arguing and now people would have to take me seriously. Plus I didn’t really know an awful lot about it so had to spend time learning. But if I actually sit down and think about it, it’s a really scary illness.I don’t tend to talk about the scary bits because people don’t tend to react well. I’m really practical about it most of the time, but sometimes I think it’s ok to be scared- it’s healthy.

  1. It’s not well known. This is the scariest bit for me. Most people who need help go to the hospital and know their doctors will take care of them. I’ve had some pretty awful experiences in the past where I’ve been crying and pleading with people to get them to treat me and they haven’t until someone else has intervened, and those experiences make me wary. Equally, lots of staff have been great and want to learn. I can’t tell you how relieved I feel when I spot a nurse or a doctor I’ve had before and know that they’ll look after me because they know my condition and I don’t have to be ‘on top of it’ anymore.
  2. A lot relies on the fact that I’m conscious. I have alerts/red flags set up and if someone picks up my phone if I’m in an accident, the lock screen tells them what to do. But it does worry me if I were to be unconscious.
  3. I haven’t had a lot of warning recently, I’ve been fine and then I’ve been in hospital in the space of a few hours, twice in resus and twice when by myself. But I felt fine immediately before. I’ve managed to get myself sorted and clearly didn’t die, but it’s a stressful thing being by yourself calling 999 and making medication choices/decisions, trying to remember what you’ve done so you can tell people helping you, all while trying not to pass out or be sick. Then add in the fact you’ve got the worry from numbers 1 and 2. I’m used to it, yes, but it’s still a scary thing.
  4. I can’t get stressed about it. An appropriate response for having to call the emergency services would be your fight or flight system triggering, keeping you safe until they arrive. That’s the whole reason I’m ringing for help, because that system doesn’t exist. So I have to try to shut off any feelings I have about the situation because if I don’t I get sicker quicker.
  5. There’s absolutely no way of checking what’s going on with my cortisol level. Diabetics can check their blood so they can adjust their medication, I literally have to guess. If I get it wrong and under-medicate, that could have serious consequences. But I also worry about being over cautious and over medicating or going to hospital when I don’t need to. If I went to hospital every time I had symptoms, I’d be there every day- clearly not an option. So I manage it based on symptoms and sometimes I get it wrong.
  6. Symptoms can be misleading. I have about 4 different types of dizzy, all meaning different things, 3 stomach aches, 2 reasons why I might shake… I’ve worked most of them out now, but it took time to work out the really bad ones from the normal ones.
  7. I spend a lot of time blocking out symptoms, because if I didn’t my life would be really miserable. Which is fine, except for sometimes if I’m really tired I miss some obvious signs of when I should be stress dosing, which can make things change pretty quickly. Or I’m so foggy or out of it I forget what I’m supposed to be doing.
  8. Small things can kill me. A argument could quite easily knock me sideways. My friend got a stomach bug (massive problem for people with AI) the other week after we’d seen him and my husband asked me to get my injection out so he could practise in case I got it. I’ve got the dentist next week and the last time I went I wasn’t very well afterwards. I don’t get stressed about the dentist, but my body doesn’t like it for some reason. It doesn’t take a lot.
  9. There are some situations I know I wouldn’t survive where others would. A car accident with serious injury, major surgery, serious illness would probably kill me. There’s no point in worrying about it, but it’s a bit depressing to think about.
  10. I can’t let myself be scared about the things that scare me because it makes me ill. One way of overcoming anxiety is to face it, accept it and realise it wasn’t ‘that bad’. But if I do that, I would be very poorly, which is what I’m scared of happening, so it would be very bad!

I’m pretty practical about it, but I’d be lying if I said I wasn’t scared sometimes. I have a few friends who know exactly what to do if I’m ill, and I feel like I can let down my guard when I’m with them, but I feel like I have to be ‘on top of it’ the rest of the time, which can be exhausting. My cortisol level can change for completely random reasons- even from thinking too much. It’s a massive guessing game that changes all the time. Some people with AI can lead a relatively normal life with few symptoms, but, I don’t seem to be one of those people at the moment unfortunately. I get on with it most of the time and don’t generally worry about it, there’s not a lot of point, but sometimes I think it’s ok to be scared.

Weight Gain & Diet

Weight Gain is by far the most visible symptom/side effect of my endocrine conditions, and therefore something lots of people comment on, usually without me prompting them to do so. Which is really depressing. I’ve purposefully avoided writing about this on my blog so far, because some people I come across seem to like to offer me (unasked for) ‘tips’, and I didn’t want to encourage those people by bringing it up. But it’s something which has come up a bit too much in conversation for my liking recently, sometimes with people I barely know, so I feel the need to write about it. I’ll answer 3 potential questions right now:

  • Prior to diagnosis I was a healthy weight and UK size 8-10. At one point, my choices were put on weight or be very ill. I chose put on weight unsurprisingly. My medications I take to stay alive significantly contributed to this weight gain.
  • I eat healthily. I’ve just seen a third (and also quite senior) dietician who has told me my diet is good and I’m doing everything I can to help myself.
  • I can’t exercise. Right now exercise would kill me.

Firstly, who thinks it’s ok to comment on anyone’s lifestyle and tell them what they’re doing wrong? Excluding medics, obviously, that’s their job. But in normal every day conversation, who seriously thinks it’s ok to comment on someone’s weight, eating habits or exercise habits and make them feel bad about it? It’s not. But for some reason, it happens a lot, under the guise of ‘trying to be helpful’. No-one on the planet has a 100% completely sin free lifestyle, and why would they? We’re human!

The ‘lifestyles lectures’ I get from Healthcare Professionals who don’t know me tend to follow the same pathways. I find it really annoying because they’ve taken one look at me now and made a snap decision based on what they can see, and it’s an unfair one: an overweight patient on steroids. They wrongly assume I bring on the problems myself and I’m not trying. But, it is part of their job to educate people, and, most people will likely try to make excuses so I can see why they have this attitude, even if it doesn’t apply to me. Apparently I’m in a minority because I actively try to look after my health.

The problem is, if I try to explain (in less than 30 seconds), it just sounds like I’m making excuses or being obtuse. I’m not, it’s a lot more complicated than that. Long story short, if I have too much or too little of some things in my body from food, it could have serious and dangerous consequences for me which wouldn’t be the case in other people. So my diet and blood work has to be monitored and tailored to suit me, which is why mainstream diets and tips don’t work for me. Some days I need to increase my carb intake to avoid hospital, for example. ‘Eat less and move more’ doesn’t work. If it were that simple, I’d have lost the weight a long time ago- willpower and commitment are not my downfalls.

I can understand why HCPs comment, even if it annoys me. But when acquaintances comment, that’s when I get really cross. It’s starting to give me a complex about eating, even healthy foods. If I choose something unhealthy at a meal out, that’s not me ignoring medical advice or showing my regular eating habits, that’s me deciding I want to enjoy a meal out and eat something different for a change, most likely like everyone at the table is also doing. It’s not an invitation to preach to me. A picture of a cake on Facebook does not mean I eat cake everyday, it means I’ve chosen to eat cake on that particular occasion. If the people commenting were the picture of health and looked like olympic athletes I’d maybe understand it. But they don’t tend to be.

So why do people feel the need to comment? Their own insecurities perhaps. People like to make themselves feel better by making themselves ‘appear better’ than someone else. I’m an easy target and they can do so under the pretences of trying to help me out. Lots of people struggle with the idea that I’ve got an incurable condition and still try to ‘cure’ me with their suggestions. Many people are actively trying to lose weight so it’s maybe seen as common ground and they feel they have something to contribute (although somehow I’m the rude one when I say ‘it’s not the same’). Some people are just nosey I guess. Once I got told I was ‘wasting NHS resources’ with my illnesses. A few people take the stance that because I receive free healthcare, they can pass judgements about my conditions because they ‘pay for my treatment in their taxes’. Maybe some assume they know more than my doctors. There are lots of reasons, and I doubt most of them have much to do with my circumstances. But my point is, it shouldn’t be down to me to rationalise other people’s hurtful behaviour, they shouldn’t be making comments in the first place. I know I do everything in my power to keep myself healthy, including making choices about diet and lifestyle which are healthy for me*, and I don’t see why I should be made to justify mine when other people don’t have to justify their own.

*Notice how I phrased that- I can’t follow lifestyles and diets other people do *because* of the knock on effects it has on my illnesses. Meaning any tips offered are usually pointless anyway. I don’t have an issue with answering questions themselves, I have an issue with pointed questions or comments with an undertone.

All three of my dieticians have said that I’m doing a good job and I can’t make any changes, and that it’s ok to not be as strict sometimes. They’ve all told me that it’s hard to manage and that I’m a complex, unusual case. Now that I know this, I almost feel sorry for the next person who tries to offer me unasked for tips, because I’m pretty sure I now know a lot more science and nutrition advice than they do, which I’ll be more than happy to share! 😉

judgement

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