Monday, 22 August 2016

M.E. On: Life Right Now

So things have been quieter than usual on my social media and blogs lately and that's because I've suffered another downturn with my health. The hard thing about writing about M.E. is the fact I have M.E.! Yeah it kinda gets in the way of me being able to lead a consistent blog life. I've typed and re-typed this post dozens of times during this period, because I know I can waffle (!) and more so than usual my concentration is limited and words and sentence structure get really jumbled in my head and I don't want you reading rubbish, no matter how much of an accurate account that might be of the current situation! So I'm starting from scratch and re-writing this post one final time and leaving out a lot of chatter, so I actually get it finished this time.
I've been plodding along as normal (well normal for me) until one day at the beginning of June when I had an appointment at home. I'd felt fine that morning, but after the home visit ended, I was way more shattered than I'd usually be. I slept where I was sitting. I haven't taken daytime naps for years (haven't needed to). Well I haven't picked up since. I am fighting the tiredness, battling to keep my eyes open on a daily basis (several times a day), struggling to sit up and finding even talking difficult. Sometimes I give in and sleep, other times I doze, not wanting to properly sleep in case I don't sleep at night (I always do though). The exhaustion is simply overwhelming and relentless, it just won't go away. I have zero energy, no strength to get up and do the limited amount of things I used to do myself. I wasn't getting outdoors or having any sort of social life anyway, but now I'm finding it difficult to get up the stairs at night and choosing between going to the kitchen to take my medication or the toilet, because I know I won't manage both. Showering was already a big deal for me, but I'm really, really struggling with that now. I've been ill long enough to know that this isn't normal for me and I don't have any plausible explanation for having done too much and therefore gone backwards from that.


My first thought was that it felt exactly the same as 2 years ago when I had the iron deficiency. So I booked an appointment (in an attempt to nip it in the bud) and this is where I could whittle on, because there were several 'disasters' in the process (obviously it's a massive task trying to get me dressed and out of the house right now), but after I eventually had a round of blood tests, they came back normal. I still didn't feel better, so made a phone appointment with my doctor and once more went through another round of blood tests, which also came back normal. My iron is a lot lower than it was after the infusions 2 years ago, but not as low as it was when I was first tested (it was basically non-existent then). They are happy it's on the low end of the healthy scale.  I've been back to the doctor again (yep, sick of that place) and he said I could go through the infusions if I wanted (such a a lovely idea!) even although I didn't need them.  Honestly though, although they improved my iron levels back then, it did nothing for my energy or tiredness. I just started to feel a little bit better gradually with time, but have never fully recovered (nowhere close) to the condition I was in before then, so it's not worth putting myself through.  Plus I know it would involve 3 early morning appointments at you guessed it, that lovely second home of mine, the hospital and that is too much of a task and I hate needles too, so I'm not doing that sh*t for fun!!
So for the moment it's just been left at that.  It's taken a lot to get my head around that it's not the iron (I was totally convinced) and obviously it's pretty worrying and scary to see how ill and immobile I can get over nothing!  I've always been able to pinpoint what caused a downturn before and although it wasn't a solid "if you go shopping for a few hours, you'll suffer for a week, if you go out for lunch, it'll take 5 days to recover" type thing, I was aware of my limitations and what would and wouldn't cause a reaction or was possible to do. I suppose I've always been cautious of doing too much over the years, because I didn't want to 'lose' where I was (if I did something mega like going to a wedding, that was liable to set me back a year and I'd lose a lot of the progress I'd made up until then) and even when doing a big thing, I've tried not to do anything 'silly' within that. When you can go backwards like this for apparently no reason though, it's terrifying. It's been hard to come to terms with being housebound, but these past couple of months, I've been more bedridden and it's no way to live. At times it's been really pitiful and hard for my family to witness too. What can you do though? I'm not a doctor, so if they say there's nothing else 'wrong', I have to trust that, there's nothing I can do. I do worry though. It's always in the back of mind "what if there's something else?" probably because this illness isn't one you can diagnose, but that's a story for another day.

I just wanted to keep you in the loop, albeit a little late in the game. The past few days haven't been so bad (hence why I'm writing this), so I'm hoping we're over the worst of it, though I'm just taking each day and sometimes each hour at a time. It's brought up a lot of topics for me that I'd like to cover in these posts though, but it's hard to know when I'll be able to do that. Generally that's how I'm feeling about blogging. I'm always buzzing with ideas and half completed photos or posts, but it's impossible to get it all out there when I'm so poorly, which is so frustrating for me. I've been trying to not be too hard on myself and usually when I feel really ill, I just let it go that I'm not blogging or keeping my Facebook updated or whatever. Some days I do feel guilty for not getting work done, though I'm sure that's something we all suffer from, not just those with a chronic illness. It doesn't help when someone bundles the pressure on by saying "you haven't done this or didn't keep that up to date" or gives me a tight deadline, life right now is hard enough without that, thank you very much (and yes, it has happened). I'm finding when I do complete something (like my Savan swan heel post last night) I'm absolutely elated, when it wouldn't have been that big a deal previously. Small wins right now!  I'm a bag of mixed emotions right now I think.  I never thought 14 years in, that I'd end up in a worse state than I've ever been and through no "fault" of my own.  Life is a strange thing indeed.  I do hope you've all been well and enjoying the summer, I've felt so isolated not reading your blogs and keeping up to date with what's happening.  I'm attempting a little bit each day now and seeing how I go.  Lots of love to you all x x x

8 comments :

  1. Something that I learned was an issue with lupus was that the disease could damage the atp energy cycle going on in your cells, so while all your levels of everything are normal, your cells are not converting anything into energy despite all the nutrients and whatnot being available. Maybe that's affecting you too, I dunno.

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    1. Could be, certainly sounds the same. Is there anything they can do about it?

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  2. I'm sorry to hear that things have gotten harder for you over recent months. I've been advised that iron infusions might be the only way to try and get my levels back up, but I'm not sure I want to do that?! I don't really know what's involved with it tbh.

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    1. The infusions certainly seem to get the levels of iron up and a helluva lot quicker than taking the pills (for me anyway). They aren't too bad, it's a painless process, it's just getting the cannula in that was the issue for me (because I have completely invisible veins and am not great with needles).

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  3. Oh my lovely, I am so sorry you are so much more unwell than usual. It must be SOOO frustrating for you and worrying. I hope and pray it is nothing too untoward (more untoward than that you are facing already) and sending you best wishes.xxx

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    1. Thankfully seem to be over the worst of it now, but that's been a full 3 months with no explanation for it. You can't help but worry at times.

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  4. I'm sorry to read this Gemma, but thank you for sharing. Sending you lots of love, xxx

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    1. Thank you, hopefully picking up a bit now and getting back to how I was.

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