Monday, 12 December 2011


Hey sweetpeas!

So I clearly still haven't mastered the art of regular blogging. I can't believe my last post was like 8 MONTHS ago! Ridiculous!

Basically, Uni work got crazily intense and the long-term pressure made me even more ill physically. I was just exhausted, and was stuck in bed most of the time. I used up every energy reserve I had (and every energy reserve I didn't have). I accumulated a lot of spoon-debt (apologies if you don't know what that means!). I then also had the stress of having to apply for benefits - DLA and ESA (the latter because I didn't - and still don't - feel able to work). I was also trying to find housing by myself, because I didn't feel comfortable with the idea of living with my parents when I'd finished uni. We just rub each other up the wrong way and they are also pretty rubbish at dealing with my health issues - they just don't get it. In fact it's not even passive misunderstanding on their part, they actually seem to have always been in denial and actively resented me for being ill or "faking" it as they probably thought I was doing. There were a lot of issues in actually finding somewhere to live as a single disabled person, and I will probably write a blog post about that specifically at some point as I feel it's an important issue.

Then eventually I found somewhere to live in Bristol in August, and I moved in at the end of the month. The last few months have been pretty tough, particularly settling in to living on my own (not just independently of my parents but also without housemates which I had all through uni, so it's been very odd being alone). I think, also, the accumulation of physical and mental "debt" I built up whilst trying to scrape through the last months of uni needed to "work its way out" as it were, and I've had to just try and be as gentle as possible with myself. That said, about a month ago I had an all-out emotional breakdown so maybe I haven't been as gentle as I should have been. I'm still kind of coming out of the end of that period and trying to recover emotionally.

As I predicted, the loss of the purpose that uni gave me really hit me hard. I had nothing to wake up for and that was soul-destroying. It IS soul destroying, but I'm feeling better about it than I was. Honestly I could hardly get out of bed not because of the M.E. for a change but because I felt so miserable. I was crying all the time, constantly uncontrollably angry and bitter at what life had thrown at me and... well, other symptoms of mental breakdown. Always fun. My GP decided to change the anti-depressants I was on and withdrawal from the old stuff was HELL. It also brought back M.E. pain I never even knew existed - I've been on anti-depressants since the age of 16 and my M.E. developed at 17, so I'd never been off SSRIs the whole time I'd been ill until this medication got changed. It felt like every inch of my body was bruised and it hurt to even get changed or shower. Luckily though, the new medication I was prescribed (Mirtazapine) is able to be taken with the old stuff (Duloxetine) so I re-started the Duloxetine which got rid of the M.E. pain which had developed while I was off it, and put a stop to the horrible withdrawal too. Mirtazapine is a sedative and has been a god-send for my insomnia. I'm only on 15mg at the moment but I take it at night and I'm knocked out within half an hour and have a pretty much perfect night's sleep. I do experience a bit of a hangover effect in the morning but it's not as bad as some sleeping pills I've tried. And since I've been on the Mirtazapine I've got a lot better mentally - the issues are still there (not doing anything with my life, not having any reason to wake up in the morning, not having any self-confidence etc) but I feel much more functional and content enough to find things to occupy myself with. That in turn helps the original problems (since I can now find things to do with myself) and again makes me feel better, so the cycle is improving :)

I've also felt a lot better physically in the last month. I seem to be more mobile, I can stand up for longer, I feel less groggy and foggy and all the rest of it. Actually, the improvement has coincided with a bout of acute bronchitis. How strange is that? The bronchitis didn't seem to add to my symptoms/ be just another thing on top of everything else, which is what I thought it would do, but I functioned perfectly fine throughout it and it didn't seem to make my M.E. any worse. Still can't believe it really.

Anyway, yes, so I wanted to update you all! :D not that there are many people to update because I don't have many followers and my blog is utterly boring and never-bloody-updated! But I'm actually reading the book Blogging for Dummies so hopefully that will inspire me to stick with it this time ;)

I don't want to speak too soon and make too much out of the last month or so being good, but I feel as though I might be able to say that I'm starting to recover from the M.E. I pray that saying that doesn't jinx the progress I've been making! I always thought that living alone and just being commitment-free and as stress-free as possible was the best idea after uni to give myself a chance of recovery and it seems to be working thus far, as hard as it has been at times.

Oh, also, I've had a MAJOR development/ step forward with one symptom! I used to despise food - the thought, smell, sight of it would make me feel physically sick. I didn't eat properly at all, never had the energy to prepare food for myself (I still don't always, but more on that in a minute), and just had no motivation to really eat because I didn't enjoy the taste of food or the process of eating. Then one day it just seemed to change! It's really, really odd. I just started wanting to eat everything that was in front of me and I started to love the taste of things. The sight and smell of food is now (mostly!) a pleasurable experience for me as opposed to before when it would make my stomach churn. I do still get bouts of nausea but they are much improved. I've started cooking and baking and I enjoy it - mainly baking because it's always making extra tasty stuff, heh. But yes, I love it! I mean this evening I made a carrot and coriander soup from scratch and it was the best I've ever tasted. This is coming from someone who, as a year 9 student, told her cookery teacher to "go fuck yourself" because I panicked and got frustrated when I didn't know what to do with a pan of boiling pasta :D also in my repertoire are flapjacks, lebkuchen, roasted red pepper tarts and oatbran muffins. Nom nom nom.

AND, not only that, but I've started eating new foods that I used to HATE! I used to honestly regard fish as my biggest enemy. Everything about it was foul in my mind. My mum used to make fish pie at home for her lunch and the smell of it... *gag* I used to have to shut myself in my room because I couldn't bear it, it'd make me retch. Then, coinciding with my weird U-turn with food, I really fancied fish pie one day. So I went and bought one, and demolished the entire bloody thing. I loved it. How random is that? I honestly can't work out why it's happened, I haven't done anything special over the last few months apart from removed myself from society slightly. (Probably too much actually as I definitely don't get anywhere near enough social interaction, and don't have any friends or anyone I see in Bristol, but I'll probably do a new post on that at some point.) Oh oh oh and the other week, in a cafe, I had granola and soy milk and it happened to come with chopped up banana. And anyone who knows me will know that I have hated banana SINCE BIRTH. Honestly when my mum tried to feed it to me as a baby I'd spit it out, which she found hilarious as she also hates bananas and we think it's a weird genetic thing we share ;) but anyway, I actually was able to eat some banana (granted, teeny tiny bits along with a mouthful of granola and milk but still!) - before I would retch and start panicking if anyone put anything banana-related near me. So to actually be able to eat tiny bits was a really massive thing for me!

Anyway, this has been a much longer post than intended :P I'll stop rambling now.

I hope everyone is well and happy; please comment/ chat to me, I ronery and onry have internet fwends.


1 comment:

Danni said...

I'm glad things are improving for you :-D Could the mirtazapine have helped with the food issues, do you think? One of the main side effects is increased appetite, and it sounds like that is a positive thing for you. My husband is on it and he's finding it really good as well.