I’ve been doing my research…

I did what every patient isn’t supposed to do and I consulted Dr Google. Which I think is fine if you have something like a headache which suddenly becomes a brain tumour from just a few clicks, but as a rare disease patient, I probably would have died by now had I not gone on Google and tried to piece things together. For example, here is where my research paid off where some of my doctors were wrong and I had to work hard to persuade them:

  • My blood pressure can go up not down in adrenal crisis
  • I put on more weight when my steroid dose is too low rather than when it’s too high
  • If my steroid dose isn’t adequate, I can’t sleep, not because it’s too high
  • Sometimes I need extra HC at night
  • My body compensates for a lack of cortisol by giving me adrenaline rushes. Which cause huge problems.
  • My body gives me an asthma attack as one of the pre-cursors to adrenal crisis. Treat the AI first and the asthma attack stops…

There are a few more examples but you get the idea. Something I’ve been banging on for ages about is my ‘I need to eat’ feeling and everyone’s been a bit stumped.

Basically, I feel terrible eg sweating, shaking, feeling sick, fatigued, dizzy, out of it, headache, stomach ache, but my blood sugar is ‘fine’. But if I eat, I feel better. So then I got told to check my blood sugar and keep a diary, which is when I noticed that my blood sugar starts to go up when I feel ill and then goes back down again as soon as I eat.

Which is not supposed to happen and I got told that by every doctor I told it to. What’s supposed to happen is you eat, your blood sugar rises, insulin kicks in and brings it back down to normal about 90 minutes after. They said I wasn’t recording it right, that I didn’t measure it properly, basically anything to do with me getting it wrong.

I did a few experiments. The more I ate, the faster it came down. Sometimes it wouldn’t go up at all after eating which is very odd. Then last month my new endo diagnosed me with reactive hypoglycaemia. Which means my body over produces insulin when I eat certain things and it makes my blood sugar drop fast. Aha! Progress! I knew I was right…

That didn’t explain the whole ‘why does my blood sugar go up when I don’t feel well’ thing. It’s never dangerously high, we’re talking about anything over 6.2 and I start to feel horrible, which is normal range, so medically, no one really cared about it until recently. But I feel terrible, and I feel awful most of the time anyway, so getting rid of the 10+ episodes of whatever it is every week would be nice.

So I went on google, and painstakingly did some research. I haven’t actually run this past my endo yet so I could be completely wrong, but since I started thinking about it this way, it’s got a tad easier to predict. Which is definitely a win!

Also bear in mind that I found the colouring in diagrams aspect of biology much more interesting than the actual science behind it when I was at school. Obviously regretting that decision now, even if I did have pretty notes.

  1. When your fight or flight system kicks in, your body releases a bunch of hormones so you can run away from the bear chasing you. I don’t make cortisol and my insulin production is messed up but I do still make other adrenal hormones like adrenaline.
  2. These hormones make your liver (I think?) dump a whole load of glucose in your blood from stores which makes your blood sugar rise. To the average human, this would only happen in a stressful situation, but because I’m currently not stable, standing up waiting for the kettle to boil is a ‘stressful’ situation for me on some days. So my blood sugar rises but not for any obvious reason.
  3. Once you’ve got yourself out of danger, your body releases insulin to bring your blood sugar down to a normal level. Except I don’t make cortisol, which is one of the hormones which encourages this to happen. And I’m also insulin resistant and reactive hypoglycaemic and everything is totally confused by now in my body. So I think my insulin doesn’t get triggered or is triggered too late.
  4. Which means my body has a kind of ‘going into shock’ moment and I feel terrible. But if I eat something, it goes ‘foooooood, we know what to do now, we need to make some insulin!’ And that’s when my blood sugar starts to come down. And the reactive hypoglycaemia bit means it comes down fairly sharpish.

I’ve also noticed that when I’m eating a lot and it’s not making me feel better, if I take more hydrocortisone, I’m suddenly not hungry anymore and I don’t feel as terrible. So clearly there is a link there too. Plus a lot of these episodes are at night when I don’t take HC and my cortisol is at its lowest.

I reckon, if my science is accurate, I could be onto something here. Problem is, I’m told to avoid eating carbs and taking updoses of HC where possible. So someone needs to decide what they’d like me to do when I have these episodes because I’ve been told off for both in the past. At the moment I’m making it up and doing what I need to avoid hospital, but that’s clearly not a long term solution!

If anyone has any thoughts, different science or experience I’d be interested to hear too! 🙂

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‘You managed X so why can’t you manage Y?’

This is a phrase which will drive any person with chronic illness crazy: ‘well you managed to do X so why can’t you do Y?’ or even ‘well you managed it yesterday, why not today?’. It’s annoying for a few reasons, but mostly because it shows you that the person saying it not only doesn’t understand your illness but they’re also questioning the way you cope with it. It feels like they’re saying ‘get a grip’ or testing you.

From people in the wider world I find it annoying but usually choose not to argue because their ignorance isn’t worth my time or energy. However, I was horrified when a doctor last week said ‘well you managed to walk in here without your wheelchair, why can’t you manage the rest of the time?’

I looked at her and blinked and asked her to repeat it. She was foreign, I was trying to give her the benefit of the doubt – maybe she’d phrased it badly. Nope, she rephrased it and it had the same undertone. So I had a minor strop and emphasised the life threatening elements of my condition and how I didn’t use the wheelchair all the time because I wanted to walk still and keep my independence as much as I could, but if I was having a bad day, I’d use the wheelchair. Surely she should be encouraging this mentality, not questioning it?!

It’s upsetting being under that much scrutiny or feeling like you have to justify yourself. Different circumstances, places, weather, terrains, activities and even just a different day sometimes means having to do things slightly differently to be able to manage. Which should be down to us to decide, not someone else. So here are some phrases in different contexts to highlight how stupid a phrase it is when used in relation to chronic illness:

  • You managed to eat your chips without cutlery, why do want some to eat soup?
  • You drove yesterday without filling up with fuel, why do you need to go to the petrol station now?
  • It wasn’t raining this morning, why do you want an umbrella now?
  • You walked into town fine and didn’t get tired, why do you want a lift back?
  • That chicken’s use by date was yesterday, but it’s still fine to eat today
  • Why don’t you like carrots? My friend Sam also has blonde hair and she likes carrots.
  • I watched a programme about mending cars once so I don’t see why I shouldn’t be able to fix yours.

Stupid things to say right? Apply them to chronic illness:

  • You managed to walk earlier, why do you want your wheelchair now?
  • You did stuff yesterday, why do you need to sleep a lot today?
  • You weren’t feeling nauseas this morning, why do you feel it now?
  • You walked into town fine and didn’t get tired, why do you want a lift back?
  • That meal’s only got a bit of sugar in it, it should be fine for you to eat
  • Why can’t you manage cooking? My friend Sam also has your illness and she can manage cooking.
  • I watched a programme on your illness once so know how to cure it.

The thing that really winds me up is the comments are usually preceded by ‘well…’. It just adds to the accusatory tone. If you wouldn’t question someone’s request for an umbrella, don’t make them justify a mobility aid. If you wouldn’t risk feeding a guest off chicken, don’t force feed them food they’re allergic to or which might make them ill e.g. Diabetics. Knowing someone with the same illness or having read about it doesn’t make you an expert.

There’s a fine line between helpful comments and unhelpful ones, and a lot of it is because we live our illness and people’s reactions to it every day. Just because you might be saying something for the first time doesn’t mean it’s the first time we’ve heard it. In a lot of cases, a simple thought before speaking helps. Except for the doctor I gave a second chance to and she blew it! 😉

Mental Health & Chronic Illness

I broke up with my psychiatrist last week. Or rather, we decided her sessions weren’t benefiting either of us so we stopped them. However, I don’t feel like I got the help I need or anything remotely useful as to how to cope or manage my mental health in relation to having a chronic illness. I’ve got a long-term, debilitating, life-threatening, life-limiting condition, which is tricky to manage and has meant that I’ve lost an awful lot of my life, but I haven’t had an iota of support in coming to terms with it or learning how to cope with it from the NHS in terms of my mental health. But I’m definitely not the only one who has a chronic illness where mental health directly impacts on physical health (and vice versa) so why is there such a gaping hole in support in this area?

In my case, I was sent to the psychiatrist for 2 reasons:

1. I’m depressed because of what’s going on health wise (situational), and because I take steroids. Regardless of why I’m depressed, I’m still depressed and need help, especially because depression causes low cortisol and low cortisol causes depression, and you get stuck in a loop.

2. My hormones and chemicals don’t function properly. There are 2 bits to the human stress response: the conscious one where you can control how involved you get emotionally with something (like in point 1), and the unconscious bit which you can’t help because your body responds automatically to it. Neither works for me, which makes me ill when it gets triggered. My endo wanted the psychiatrist to assess and treat both responses, but prescribe medication to help with the unconscious part so that it affects my physical health less.

Except I didn’t get support for either. I do things to help myself every day, but only because I did some research and asked friends what helped them. I pay for private counselling because the NHS won’t provide me with a trained mental health therapist (the ones I’ve seen in the past are untrained and follow a tick box questionnaire) and they definitely won’t allocate one who understands endocrine disorders, whereas the one I found does.

The psychiatrist said to expect good days and bad days with my mental health (agreed) and that until my physical health improves, my depression won’t improve. But my physical health won’t necessarily improve, to which she said I just had to get on with it, basically. In other words, I’m not really her problem because my physical health is what’s driving my symptoms, despite the fact that those mental symptoms are negatively impacting on my physical health. How do I fix that?

She said I should be doing CBT, which I am. However, CBT only helps if your thoughts or interpretations of something are creating problems because you’re mistaking emotions for facts, or catastrophisising or trying to second guess people, for example. Except, as I pointed out, I’m not having an irrational emotional response which I’m mistaking for fact if I get upset because doctors tell me to my face that they think I’m lying (and then get proved wrong and apologise, but the damage is already done). Or I’m not catastrophisising if when I go to hospital I have to argue with people because their lack of action due to inexperience of AI has the potential to kill me and almost has done a couple of times. And I’m not second guessing doctors if everything I worry about or predict might happen actually does happen. Or the fact that I have to contemplate death and know that I wouldn’t survive things other people my age would on a regular basis. Yeah, sometimes I do blow things out of proportion and CBT does help, but what about the stuff directly linked to my illness like I’ve just mentioned? What do I do about the pretty regular, traumatic or negative encounters I have which make me depressed? And I can’t control my involuntary response to those things either, so I’m fighting on two fronts.

But I’m clearly not the only person who will have these experiences or problems. And, even if I didn’t have a rare disorder and had something more ‘common’ but still debilitating, mental health support doesn’t seem to exist to help you come to terms with your illness. In balance, I actually deal with my illness and its restrictions quite well- I’m not a bitter, angry person because of it, but only because I’ve worked hard on my mental health myself. Not everyone will be in a position to be able to do that and we shouldn’t have to be really.

Someone should be trying to help us because it’s bad enough being sick never mind feeling like you’re isolated and exhausted from it to deal with the mental side. Irritatingly, as soon as I said my Grandma had died, she suddenly sprung to life and offered me bereavement counselling, which I don’t feel I need because those emotions were far easier to process.

I think there’s a massive problem here which needs addressing. But then mental health treatment in general on the NHS is patchy and inconsistent I’ve heard from other people. I’m definitely not going to get any help by not seeing my psychiatrist again, but actually, my mental health improved slightly after I made that decision because I could stop being anxious about the appointments and the fact that she clearly doesn’t understand AI at all and kept coming out with unhelpful comments. For now I guess I’ll keep plodding along then!

Food & Diet

Most people don’t really think about what their bodies need and how they fuel it. Like, people go on diets and say they’re ‘clean’ eating, but it’s not very often that people actually look at their body’s needs, tailor a diet plan to suit them and watch how their body responds to it. It’s usually something that’s been found online or in a book that fits ‘the masses’ and mostly (but not always) for aesthetic or weight loss reasons rather than overall health. In our culture, thin=healthy. But that’s not always the case.

I’ve been having issues with feeling well and diet for a long time. The only way I could vaguely feel like I wasn’t going to pass out or faint for a long time was by eating a lot of sugar and carbs. There’s a cortisol-linked reason behind this, which I’ll go into in another post, but I’ve learnt recently that this is also partly because I’ve got reactive hypoglycaemia. So basically, I’d eat a lot of carbs and feel better temporarily, but the carbs made my blood sugar drop too fast and I’d feel like I was going to faint again. Which meant I’d have to eat again to make my blood sugar go back up and the cycle continues- it’s like being on a roller coaster with the highs and the lows. I became a bit like the plant in Little Shop of Horrors- the more I ate carbs, the more I had to eat them to keep me feeling ‘stable’.

I’ve been to see many dieticians and they were a bit stumped. But with an actual diagnosis now and the advice of eat 5/6 small meals a day rather than 3 big ones from my endo, I’ve been doing some experiments, reading and learning. I’m essentially eating the same or less than I was before, but more routinely and regularly. Here’s what I’ve learnt so far:

Eat like a sheep- little and often

Those were my endo’s exact words. Now I eat a meal of some description every 2-3 hours, regardless of whether I’m hungry or not. Mentally, it’s a lot easier to deal with because I’m not as hungry all the time, but there are times when I definitely feel I have a bit more energy than before. (Although I’m stress dosing currently so not a completely valid test for the scientists amongst you).

Eat low carb/low GI

I’ve been eating low carb high fat anyway, but the key is eating even fewer carbs at each meal but more often. That’s not zero carbs, I still need to eat carbs, but I *think* I feel relatively steady on between 10-25g carb per meal depending on the time of day. It’s a massive case of trial and error though.

Some foods trigger when they ‘shouldn’t’

Some foods make me feel terrible, I’ve discovered, even if they’re low carb or low GI. Raspberries should be fine but seemingly aren’t. Likewise with sweet potato and dark chocolate. Pretty much any of the foods I really enjoy, which is pretty frustrating! So it’s a case of working out which foods cause problems even though they’re on the ‘ok to eat’ list. You’ll be relieved to know that small amounts of Nutella seems to be fine (thank god!), possibly because it’s probably part of my blood stream by now 😉

It depends on the time of day

I was eating a portion of porridge recommended by a dietician but with a bit of experimenting I realised that actually it was eating that amount of porridge which was messing me up by lunchtime with the rollercoaster feeling. I halved the amount and I stopped feeling quite so all over the place. However, I seem better if I eat slightly more carb in my evening meal.

You have to think about food combinations

This is where it gets hard and maths-y. Each meal needs to have carb, protein and healthy fats. So that sometimes means I end up eating a hunk of cheese if I can’t find anything else to go with a salad. Cheese and peanut butter seem to fix a lot of problems, especially if I’m not feeling well and need something fast. Although not at the same time, that’s just gross!

But you also have to think about *where* the carbs come from

More maths. Carbs coming just from vegetables makes me feel shocking most of the day, except for at lunchtime, where I worked out that carbs coming from obvious carb like sources e.g. Bread or oatcakes makes me feel terrible. At 10.30 and 14.30 meal I eat oatcakes with protein and fats and at lunchtime I eat only vegetable soup and salad at the moment.

You can’t cut the calories

If you’re cutting carbs, you can’t cut calories as well, otherwise you don’t get enough energy. Problem is, we’re in a culture where people think fewer calories means better for you. Actually, lots of low fat or low sugar things have more carbs in them than the full fat versions. It just makes eating out or from packets hard work sometimes.

Eating in the middle of the night is ok

I used to try to convince my body I didn’t need to eat and try to tough it out because that’s what the dieticians said. But having done some research, all that happens if I avoid eating overnight is that when I do eat my porridge first thing, my body peaks and drops blood sugar a lot quicker, which then causes me problems for the rest of the day. I tend to eat things with 0 or traces of carbs overnight, which has been working so far.

Cortisol and blood sugar are linked

I’ll go into this more in another post, but just to add to the difficulties, sometimes my blood sugar is off because of what my cortisol is doing. But I can’t check cortisol in the same way I can check blood sugar, so it’s another thing to guess at and experiment with.

I’m still learning, and I think I’ll be learning for a while. It also takes a lot of planning and organisation to get right, which is actually pretty complicated, especially if I’m not at home. So I’ve got alarms going off all over the place! I’ve got a testing metre so I can check my blood sugar which has been helpful and means I can vaguely work out what I should be eating or what isn’t a good idea to eat. I’m trying to get used to the way my body feels with it though- numbers and measurements are good indicators, but aren’t the be all and end all. I’d rather learn my body’s instincts if I can. And sometimes I’ll eat cake and put up with the feeling crap afterwards because sometimes you have to eat cake!

Photo: google image

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.