Thursday, 3 July 2014

Living with ME/CFS

Well hello! Sorry I've been gone so long, my ME has decided to play silly beggars and give me a good kicking. This, in turn, makes my depression and anxiety much, much worse as I am extremely stubborn and hard on myself. I dislike being beaten, and when your body refuses to do what you need it to do its upsetting and leaves you feeling like a failure. In order to explain why I am sometimes out of commission, I thought I'd talk about what it's like to live with ME, about how it affects mine and my husband's lives.

Firstly, let me just say, that the medical community in the UK know next to nothing about ME. I was told, by a leading specialist in the condition, that sometimes there are things medicine knows nothing about yet. ME is an illness which seems to be the catch all diagnosis for everything medicine knows little about. The symptoms, effects, prognoses differ greatly from person to person. Some people may feel extra tired for a few months before snapping back to normal. Others can end up in a coma, from which they never wake. There are very few conditions out there with such varying effects. Worse, it is a condition which promotes scorn. Years of the name 'Yuppie Flu' being flung about have left sufferers looked on as lazy and malingering. While there are undoubtedly people who do look at some of the vague symptoms lists and seize upon the chance for attention etc, those of us with real and measurable symptoms would give anything to be free.

Now, to my symptoms. I suffer from extreme fatigue. In a bad patch I can sleep for 23 and a half hours out of 24. No amount of sleep refreshes me, but I have no control over when I sleep and wake. My body just switches off and I fall asleep, whenever and wherever I am. During the brief moments I am awake, I am confused and slow, and I never remember anything which happens during those moments. Now, to put it into perspective, I used to suffer from severe insomnia, I used to need medication to make me sleep. I slept so lightly that I awoke constantly, even after taking quite considerable amounts of sedatives. I couldn't doze once I had woken up for the day, and I sure as hell couldn't sleep anywhere but my own bed. Now? I fall asleep all over the place! It's comical in a way, or at least I try to look at it that way! 

I have a lot of pain in my joints and muscles, I also suffer from stiffness and weakness. I need to take quite a dose of painkillers and muscle relaxants to enable me to function at all. My right leg is particularly bad, I can't really move or lift it on my own. Many times, my knee locks and my leg becomes rigid. Ian then has to massage it or force it to bend. My joints tend to swell which also inhibits my movements. As a result, I can't really walk anymore. I can manage a couple of rather shaky steps with Ian's help. Luckily, I have a wheelchair, provided by the NHS, so I am able to go out sometimes. Sadly though, it's so tiring and painful that I can't do it very often so weeks can pass without me seeing the outside world. Plus, I HATE to be a burden to Ian, who has to push me in the wheelchair, so more often than not I choose not to even mention going out.

The next symptom is somewhat private, so suffice to say that bowel and bladder issues are a known symptom.

One of the very worst symptoms, for me at least, is the brain fog. I used to have a scarily good memory, I could quote word for word something someone said 10 years before. I knew a stupidly large amount of useless facts. I never had any trouble concentrating, I could sit for hours doing something and my attention would never wander. Now though, sadly, I forget a lot. I phase out when someone is talking to me. If I'm having an especially bad time, I struggle to concentrate on anything. The only things I can concentrate on for any length of time are reading and watching YouTube videos. If Ian talks to me while I'm reading I get confused, and promptly forget everything I have read on a page, along with struggling to understand the words he's just said. I have to unravel it all in my head before it makes sense. Anybody that knows me will confirm that I used to be sharp, I always had a sarcastic or daft response. Now, not so much. Ian tends to get upset with me because he thinks I'm not paying attention, or that I'm uninterested in what he's saying, but thats not the case at all. I HATE the confusion and brain fog, it truly feels like I'm losing the plot, and that part of me is sitting in my brain screaming at me because I'm slowly turning into an airhead.

As I said at the start of this post, when my ME is bad, my depression and anxiety get worse too. I start to hate myself even more than usual! I decide I am too much of a burden on everyone I love. Ian is still young, and shouldn't be stuck with a disabled wife. I'm no longer the woman he fell in love with, and married, I am instead like a 95 year old woman. He has to look after me 24/7. He has to help me get to the toilet, help me dress and put my shoes on, cook for me, manipulate my muscles and joints when they get stiff or they lock. None of which a newlywed 28 year old man should have to do, certainly not for another 40 years or so! He also can't find work, certainly not work that would fit around caring for me. This means we have to survive on my ESA (the pointlessly renamed Incapacity Benefit, it stands for Employment Support Allowance....pfft) Support Group payment which amounts to just over £400 a month. £400 to support 2 adults....the maths don't really add up. Thanks to the DWP buggering up when I attempted to renew my DLA (Disability Living Allowance, now, also, pointlessly renamed PIP, Personal Independence Payment) and losing the form, never getting back to me to rectify the mistake, we lost my DLA and Ian's Carer's Allowance. Granted, the government think that carers should be given the princely sum of £61.35 per week. Not quite the equivalent of the full time wage he would be getting if he could. I know some of you will be screaming that we shouldn't be living off the state, and that your taxes pay for us. Let me say this to you, you can tell the merit of a society by how well it supports its sick, disabled and elderly people. Welfare funds are there to help those of us who need it, who have worked full time until we became too ill, whose parents and grandparents have paid into the system all their working lives. I am not someone who has lived off the state all my adult life, nor have I bred in order to get housing and extra money. I never had any intention of not working and living on benefits. If I could work then I would, because that way I would earn enough to live comfortably, without needing my family's help, without living on Smart Price baked beans! All this is what I worry over constantly, to the point of Ian being awoken in the middle of the night by me having a huge panic attack. I worry so much about everything, whether Ian should move on and find a woman he doesn't need to do everything for, who he could have children with, my fear that I will keep getting more and more ill to the point where I am in a permanent state of confusion and dementia, needing help to use the toilet and washing. My anxiety is so bad that I cannot cope if someone knocks at our door, because my home is the one place I feel safe. I am constantly anxious about my application for PIP as it has been over 16 weeks without any news at all despite repeated phone calls asking for updates. If we are not awarded it we cannot survive on the money we have now, so we would need to go to a tribunal to fight the decision. Everything causes me to worry, which makes my anxiety so bad that I cannot function, which worsens my depression. Not fun!

So there you have it, the effects of ME on our lives, sadly it dominates everything that we do and feel. I couldn't cope without Ian here, I wouldn't be able to live independently. Yet this is a condition which is largely unknown, and with most people dismissing it as malingering. Not the funnest post I know!

Thanks for popping by!



  1. Wow! And I thought my disability was a lot. I find out interesting that you have this but yet you're still willing to keep up with your blog. I actually respect that!

    One thing that I thought I should mention is that, I don't think you have anything to worry about with your husband. I mean, yes, he does have to take care of you, but in the way I see it he could have just left you when you got your diagonse and then you would have found out how much of a man he would have been, but instead he's being the husband he should be to you. I mean, unless you two changed your vows but doesn't it go "in sickness and in health" or something like that? This goes with it.

    I have my demons about this sort of thing about how would anybody want to take care of somebody like me with such a big physical disability, I wouldn't be able to do some of the normal everyday things, but as long as they understand that and do what you can then you'll be fine! Hope you have a good day tomorrow! :)

  2. Hi!

    I hope it didn't come across too whiny! I cope pretty well most of the time, but I do have bad patches. I find the blog therapeutic, as odd as it may feels like I am accomplishing something, which helps me feel less useless.

    Deep down I know I have nothing to worry about where Ian is concerned, he is the kindest man I've ever known and for some strange and unknown reason he loves me! I just wanted to give a glimpse into what its like when my ME is especially bad, the effect it has on my mood and personality. I'm sure you understand how exhausting it can be battling through every day....every now and again you just need a break!

    I'm pretty sure you will have no trouble finding someone who will fall in love with you, having read some of your blog, you're obviously an extremely lovely person! Even before I got ME (I already had the anxiety and depression, and I'm guessing a milder form of ME as I got ill constantly), before I met Ian, I thought I would probably be single forever because I was never too bothered about relationships. I liked my freedom and being able to go home and be alone! Then I met him and nothing else mattered anymore. I think if I'd been disabled when I met him I'd be less worried about losing him, becuase he knew what he was signing up for at the start!

    Thanks for the comment, and for reading my ramblings at all!

  3. You weren't whiny at all! I understand what you were trying to say in this post. Whenever I do posts like these, I feel like I'm a whiny and a bitch all at the same time. My blog is like my baby to me. I'd be lost without it. That's why I hardly take breaks on it because I feel like I'm neglecting it in a weird way! Lol

    I know you're worried about Ian, everybody worries about something. This isn't any different. He seems like your Prince Charming! It is difficult to get through every day. In a way, I want a break but I want to take a break where's people around so my thoughts don't cloud my mind.

    Thank you for the kind words and you're welcome! :)