Back to School

This time of year is always a bit weird for me now. I obviously went to school as a child, went to university and then trained and worked as a teacher. So I’ve always worked in academic years more than calendar or tax years and September always brought about this anticipation of getting stuck back into hectic school life, new beginnings (mostly because the curriculum changes every 9 seconds at the moment) and new pupils, and just a general feeling of ‘bring it on’ and getting excited about the things to come in the year. Being a music teacher, the autumn term and the Christmas build up was always a really busy time of year. I loved being a teacher. And I really loved September.

It’s also the time of year where I ‘got sick’. I don’t have an addy-versary (short for addisons diagnosis anniversary) like some people do, or a day that I mark as a day I got diagnosed with anything. I think it’s a bit weird when people do that, but each to their own. I do know that my adrenal insufficiency diagnosis came on a Friday because I was supposed to be discharged that day after a 2 week admission and then I had to stay in hospital over the weekend instead, so I was really annoyed. Not a clue about a date though. Plus I had to spend a long time (about 3 years total) arguing with doctors that there was something wrong with me- it wasn’t like I had a couple of scans or blood tests and was told a diagnosis. It was a relief to actually get a diagnosis in the end!

Coincidentally, any ‘break throughs’ over the years in my treatment all seemed to happen in the first part of autumn. So I still kind of have this sense of anticipation about September, because I’ve just finished a massive batch of tests (although I have to redo two of them due to lab issues). I’m also trying not to get too focussed on the ‘what will this year’s bombshell be’ because if I stress myself out too much I won’t be able to repeat the tests I need to do to get to the next stage!

So some of the feelings of ‘bring it on’ and potential new, unknown things are similar. But not as exciting or as focussed/directed as being at school working. It’s a strange feeling, particularly as I really miss being a teacher. I’m a reasonable human being in that I completely understand the ‘I don’t want to go back to school’ statements/social media updates from teachers and students (or the ‘hooray!’ ones from the parents!). But I do feel a kind of pang when I see them because I wish I was able to go back to school and moan about the ‘normal’ stuff along with everyone else.

Although, it does get a bit wearing seeing 95 million photos of kids in school uniforms stood in front of their front doors…there must be a better back drop for the ‘back to school’ photo surely!? 😉

What I learnt from my niece

This week, I spent a few days with my 4 month old niece (and nephew, my brother and sister in law). It was the first time I’d been able to hold her because the last time I saw her she was still in the special care baby unit after having been born 3 months early. She wasn’t fully developed when she was born and it was more likely she would die than survive at one point, but she’s actually doing really well now.

But being born that early means she had some serious growing to do. And it left her with a couple of heart conditions and this nifty trick where she sometimes ‘forgets’ to breathe (apnea). She takes it all in her stride though and is a happy (and very cute) baby.

Me and her are a lot alike in some ways. She needs to sleep a lot to recover, so do I. She needs to eat every 3 hours, me too. In fact, our ‘feeding’ times seem to coincide quite nicely, even at night. She has to have special milk, I have a medical diet to follow. She sometimes needs to go to hospital, so do I.

But it’s different for her. If she needs to sleep or eat or do what she needs to do, she doesn’t worry about how annoying she might appear to everyone else. She doesn’t feel the need to say thank you a lot because people are accommodating her. She doesn’t feel guilty about the fact that people are having to change the way they do things because she’s having a bit of a blip. She also didn’t apologise when she stopped breathing and worried people temporarily- it’s a part of her life. Ok, she’s a baby, people have to do things differently for babies anyway and babies are oblivious to what’s going on, but no one minded working round her schedule. And, because me and her have basically the same schedule, I realised no one minded working around me either.

Part of it is because I feel that I might annoy people by saying what I need. But I’m polite and don’t take the mickey, so really, if people wouldn’t make sarcastic comments about what a baby needs, then they shouldn’t about me. And if they do, they’re not really people I want to be mixing with. I sometimes feel bad about using my wheelchair because it means someone has to push me. But my niece gets pushed in her pram and it’s just expected that that’s what will happen if we hang out with her, so if people know I use a wheelchair, then it’s kind of the same. People don’t (or shouldn’t) mind if it’s seen as ‘normal’ for me.

It was quite nice having a napping buddy. In fact, one of the nicest moments we spent together was when we were both kind of snoozing on the sofa, watching each other and ‘chatting’ every now and then. In that moment, I didn’t feel like I was missing out on anything or being awkward because I needed to lie down.

So what I learnt from my niece is that I shouldn’t feel guilty about asking for what I need. The people who care about me won’t mind, and the people who do mind aren’t worth me worrying about. I can be polite and say please and thank you, but I shouldn’t feel like I need to be ‘in debt’ to people because they push me around in my wheelchair or take a break with me. And if they do make me feel like that, that’s their problem, not mine. I don’t expect everything to revolve around me, but if something needs to happen because it’ll make me sick otherwise, it’s ok to say so.

The other thing she taught me is that it’s more restful to focus on one thing at a time, like eating or sleeping. When we had our nap together, I found myself chilling out just watching her rather than thinking about how I was going to manage the rest of the day. Consequently, I needed less rest time and managed more.

It sounds weird to say I ‘learnt’ things from a baby, but I guess spending time with her gave me room to think. And she’s super cute!

Synacthen Test Results

A couple of weeks ago, I had to repeat my Synacthen test. You can read about they whys and wherefores in my previous post about it, here. This is the third time I’ve done this test, and, this time, I was hoping for some definitive answers about whether or not I’ve got Primary or Secondary Adrenal Insufficiency, or both. The other times I took the test, they didn’t collect an ACTH sample, which is one of the ways you can rule in Secondary Adrenal Insufficiency, despite me asking them to last time. This time my endo and I both agreed that it was important to get this result.

However, I’m a tad grumpy because my bloods weren’t processed within the 30 minute window for ACTH testing, meaning they couldn’t get a result. So we still don’t know! And I might have to potentially take part of the test again, which I’m not happy about, because you have to stop steroid medications, which is horrible.

Not all of the test was pointless though. We did get my cortisol results back. My baseline result was ‘less than 10 nmol/l’ and my 30 minute response after ACTH injection was 63 nmol/l. For reference, a ‘normal’ person’s levels should have been 500 ish at baseline and increased further by 30 minutes. I’ve told many doctors many times that I might ‘look ok and sound ok, I’m just good at compensating’ and this test kind of proves it. On the day of the test, I was able to walk the short distance into the hospital and sound coherent in conversations, but with a level that low, both before and after the test, I wasn’t far off being critically ill or dying from very little shock or over exertion. Maybe I should give myself more credit that I am still able to even vaguely function, be nice to people and not be a hormonal wreck all the time even though my bloods came back like that!

The results were sent in the post to me and my GP within 48 hours of the test along with very specific instructions, which kind of also highlights the seriousness of having low cortisol. I already knew the instructions anyway, and nothing changes medication wise for me because I’m already on replacements, but it did come with a very helpful, idiot-proof letter from the professor in endocrinology managing my care. It clearly says that I have Adrenal Insufficiency and not Adrenal Suppression (where the adrenal gland might be suppressed and stand a chance at recovery) and that no one is allowed to decrease my steroid dose. Hooray! I’ve been having arguments with various people about these two points for about a year, so it felt good to have it in writing.

Even better, it very clearly states that IM or IV therapy might be required ‘to prevent risk of adrenal crisis’. This might not seem like a big thing, but sometimes I end up in hospital arguing with medics who are refusing to give me my IV, that while I might not be in full blown adrenal crisis because I’m quite clearly talking and not unconscious in a coma, could we give me the IV while I have hypoadrenal symptoms so that I don’t have to get to coma stage before they give me it. This letter might help with that. And, the icing on the cake, it says ‘the lowest dose the patient feels well on is the safest dose’, in big letters and bold. Which means the this department seems to actually care about what its patients actually *feel* like and not just being on the standard 10/5/5 dose.

So my annoyance at the ACTH test being messed up kind of got neutralised a bit by the really helpful stuff that also came in the envelope. Fingers crossed I don’t have to do the test again though!

What I learnt from watching the sunrise

After being ill with Alzheimer's for a very long time, my Grandma died this week. So it wasn't unexpected and definitely kinder for her than living the way she was, but, you know, a family member died, so it's still sad.

I found myself awake for my usual 4am time (endocrine system usually wakes me up then). We were away on holiday in Devon with a beautiful view of the sea, so I decided to get up and watch the sunrise over the sea and Wales. Like lots of people do after someone dies, it got me thinking about the impact we leave on this planet once we die. I read somewhere once that people 'die' twice- firstly when they physically die, and again when the memory of that person dies as well e.g. the people who knew them either die too or 'forget'.

But what if you don't really know anyone? Or people don't talk about you to remember you? Does that mean the impact you had was nothing?

This is where the sunrise was quite timely. It was a beautiful sunrise as well, which helped! The most important thing which happens in our lives every day consistently is that the sun rises. Without it, plants wouldn't grow and we wouldn't have oxygen. Or we'd freeze to death. Or be depressed from not having any light. You get the idea. But hardly anyone notices it, except insomniacs and people awake at 4am like me. And even fewer acknowledge it or are grateful for it. But every day it pops up, does its thing and goes down in the evening.

I guess my point is that we might think we have very little impact on other people, but, actually, we still can without realising it. Seemingly small or routine things are actually the important things. Kind words or gestures which the giver might forget usually stick around the longest with the person receiving them. Random acts of kindness do make a difference.

So our impact might not be the same as JK Rowling losing billionaire status because she gave all of her money to charity kind of impact, but to someone somewhere, something very simple can have the same impact on someone as the sun rising has on the billions of people on this planet.

What I’ve learnt from clouds

I'm on holiday by the sea in Devon. In fact, I can see and hear the sea from every window in the house we're staying in. It's been lovely! The other evening, I had a bath in this amazing bath:

I listened to the sea and watched the clouds. It was sooooo relaxing. I'm going to apologise to my friend Thor, who studies clouds, because I'm pretty sure my analogy isn't remotely meteorologically correct (I'm not even sure if that's the right spelling!).

There were grey, rain clouds and fluffy, white clouds. The fluffy white ones were still and big and there consistently and the grey, rain ones were drifting speedily by in the strong wind. Every now and then the grey ones covered the white ones and you only got glimpses of the white ones. And then sometimes the grey ones were really thick and completely obscured the white ones. But the grey ones passed over and the white ones came back again, still big and white and with the sun reflecting on them in the same place.

On my Calm app, Tamara (the woman who narrates it -we're on a first name basis 😉) says every day 'emotions pass, this too shall pass'. And it's like the clouds. The bad, nasty things are just dark clouds temporarily covering up the white, fluffy, exciting things, or the good things in life. Good things are still there in the background even when the dark clouds pass over. You have to work harder to see them, but they're still there.

Not exactly a difficult conclusion to come to, but it made me feel good at the time I was watching clouds (which I love to do anyway!). Plus, for once, I get to brag about somewhere beautiful I've been 😉

Insulin Resistance & Reactive Hypoglycaemia

I saw a different endo last week, which was mostly preparation for the synacthen test I had this week. However, we did talk about the hypos (low blood sugar episodes) I've been having, and I got diagnosed with something else; reactive hypoglycaemia.

A hypo isn't pleasant. When I have them, I feel shaky, sweaty, confused, have poor concentration, dizzy, and have a headache. Too low a blood sugar is dangerous, so needs to be treated so you don't become acutely ill.

The consultant actually diagnosed me with an 'abnormal phase 1 lag release' (whatever that is!). But that's a bit of a mouthful! I already have insulin resistance, which means my body needs a bit of persuading to make insulin, and then when it does it floods my system with it. But having reactive hypoglycaemia means that my blood sugar level gets pushed down by the excess insulin and I have a hypo, or something that feels like a hypo because my body doesn't know if it's coming or going.

Still following? If so, well done! It was at this stage of the explanation that I really wished I'd paid more attention in biology at school. Reactive hypoglycaemia also means that when I eat, my blood sugar goes up a tiny bit and then down a lot, rather than up a lot (ish) and down a bit like most people's do. I've been telling doctors this for about 18 months and they've all been telling me 'that's not right' or 'you're reading it wrong' but the professor in endocrinology I saw last week didn't flinch when I said it and knew exactly what was going on, so it can't be that weird!

This actually explains my 'I need to eat' feeling I get and why I need to eat seemingly constantly, even overnight. I eat something, insulin isn't used the way it's meant to, my blood sugar goes down and I feel hypo-ish so I need to eat to get my blood sugar to go up a bit and the cycle starts again. So really, when I feel hypo, it's because of what I've eaten a few hours ago because my body has a lag or delay. Which is a tad hard to predict!

Just to complicate things further, hypos are also really bad for Adrenal insufficiency, and hypo is one of the onset of crisis symptoms. It's been pretty entertaining trying to guess whether I need sugar, carbs or more hydrocortisone during these episodes!

My consultant's exact words were 'think and eat like a sheep- graze little and often'. Which made me laugh- a consultant with a sense of humour! Rather than 3 meals a day, I should be eating more like 6 or 7 smaller meals, made up of low or complex carbs (low GI). I've essentially been eating the right foods but the dieticians and my other endo told me to aim for 3 meals a day. So I did and it was hard. I'm hoping this might work better and I won't feel so much like I'm on a rollercoaster blood sugar wise.

I never have high blood sugar, my over producing insulin (albeit with a lag) takes care of that. I need to do some more reading about it and, from what my consultant said, it's not easy to work out and will be a lot of trial and error. But it feels like some progress after I've been hitting brick walls for almost 3 years with this.