Thursday, 21 November 2013

Update: relapse and psych stuff

I know some people are wondering what is going on so this is just an update to let people know that I'm still alive!

I've been relapsing pretty much ever since my previous update. I spent the weekend in bed and then attempted uni on Monday, which resulted in me fainting mid-lecture and coming round lying on the floor in a packed lecture theatre with my lecturer and several friends around me, with no recollection of how I'd ended up on the floor. All very embarrassing. I went and got a sugary drink, convinced myself I was ok and attended a second lecture. Thankfully I remained conscious but felt increasingly unwell so spoke to the staff I was meant to have later in the day and retreated home to bed.

It soon became clear that the weekend in bed hadn't revived me to the extent I had hoped and I was in fact in a bad way. I realised this isn't a flare, it's a full-blown relapse. Exactly what I've been dreading while my functioning has been so low and had been hoping to avoid until my weight had increased significantly.

It's been a nightmare. My weight always drops during relapses because I'm asleep or practically asleep a lot of the time (you can't eat while you're sleeping, a revelation I know), I also simply don't have the energy or the incentive to get out of bed, go to the kitchen, decide on something to eat and eat it; it just doesn't happen. Relapses are all about riding it out. I eat what is within arms reach, which means picking on biscuits and mints as and when I am awake and can face both food and physically eating. I am eating most of a proper meal every evening thanks to my awesome flatmates, who I frankly wouldn't survive without at the moment, but other than that my nutritional intake is limited at the moment, as is always the case during a relapse.

The difference this time is that I'm under psychology for assessment for an eating disorder; try explaining the above to someone who is obviously looking for psychological reasons stopping you from wanting to eat. It all gets difficult and complicated. If I'd had a few more months between finding a successful medication and this relapse things would be very different. I would have shown that with reduced nausea I can eat well and put on weight, and that there's nothing psychological stopping me. And then it would have been easier to later explain that CFS relapses severely impact on my ability to eat well, and it all would have been nice and separate and easy to decipher. As it is, she's worried about my weight and even going as far as saying that my BMI is not far off being fatal, which is frankly a load of rubbish, but it does make you think; at the same time it's also unhelpful because I don't feel able to do anything about it until this relapse passes. Although, there's a possibility this relapse could be maintained by my malnutrition, which could result in a proper mess.. But let's not go there..

I'm also working with my psychologist on coping with my condition, because, as her report states, I am 'feeling fed up and at the end of my tether with regard to coping with my CFS condition'. I've just had enough, I want it to leave me alone and let me get on with my life. We haven't really made any progress so far though, but I have only had 2 sessions, and they've been more for her to get to know my situation and for me to feel comfortable talking to her. In those regards, I suppose the sessions have gone fine. And I think the fact I was in a seriously bad way when I went to my appointment the other day probably hindered any real progress to some extent (when I'm that ill I'm pretty numb to everything, because I'm too tired to care, I just wanted to get back to bed in all honesty).

My psychologist seems aware that I don't have an eating disorder in terms of anorexia or bulimia, but she thinks I could possibly be stuck in a cycle of nausea causing lack of eating/malnutrition causing nausea etc. Obviously physical causes for my nausea haven't been ruled out yet (I have FINALLY got an appointment through- am seeing an upper GI surgeon in January- which feels like forever away), but if nothing is found we are going to explore other possible causes for my nausea. I'm trying to keep an open mind, because at the end of the day I will try anything that helps, although I don't really see my nausea as a huge issue at the moment to be honest. It was, a few weeks back, but now that I'm on the right meds, it's the relapse causing more of an issue.

I've spent so much time in bed over the last few days, and most of the time I've been sleeping or deep resting, so it's been incredibly dull. I've had a few appointments, but other than that I've just been asleep or lying with my eyes closed- not exactly thrilling! I'm hoping to return to uni for a while tomorrow, but if I take a turn for the worse I will need to be able to leave, and then hopefully I'll be well enough to return to uni properly, or to some extent at least, next week.

I don't know whether this is realistic, or wise. I've been in a cycle of pushing, causing relapses and losing function for a long time now, and there's very little function left to lose. My body is screaming at me in every possible way. Should I return to uni? I know I want to, but that's a separate matter entirely. Something has to change, I know that, I have to do something to try to prevent these horrific relapses, but at the same time I'm not really ready for change. Other options just don't appeal. I've fought so hard to get this far, walking away would be inexplicably difficult. This is my life, my future, and it all just seems to be so close to disappearing in front of my eyes, and there's absolutely nothing I can do to stop it. The harder I cling and fight to stay here, the more ill I get. It's really tricky. In a way I feel like I have no idea what to do to control my condition, but at the same time I know if I walked away from uni there's a good chance my level of health would improve- not miraculously, but I'd certainly have fewer activity-induced relapses, and the continuous deterioration might actually stop. That decision is a seriously hard one though, uni is my way of getting the career I want, rather than just a job. And I don't know that there's anything else I want to do, or that I feel able to do with my CFS. I'm terrified I could end up incapable of work and living off disability benefits, which would be my idea of hell- no hope, no future. That's not a life I like the sound of in the slightest.

I'm still young, I've got years ahead of me (hopefully), but it's difficult to decide what I'm best to do with my time now.. Is it best for me to take some time to look after myself properly, or am I best to just keep going towards what I desperately want, even if there could be implications..? It's difficult to know.

My head says leave to sort my body out and improve my health, my heart says stay to sort my life out. I want to get better, but I don't want to leave.. When will this illness stop beating up and let me finally get back on my feet (literally..)?

For now, I'm not rushing into anything. I will reintegrate into uni, taking things slowly at first, will see how things feel and how I feel about things, and then I'll see where things stand..


  1. Wow your poor thing things sound really tough for you... the one thing that strikes me is that you already know the answer.. you've repeatedly written that you know your health comes first, uni and a career are nothing without your health (take it from one who knows...who can no longer work and is living off disability benefits.) You have identified the push crash cycle and are aware of what is exacerbating your symptoms. So it's up to you to do something about it. You have to decide to put yourself first for a while, as you say you're still young. If you keep pushing yourself trying to have the life you believe you should be living you will end up seriously ill. Take a year off to look after you, uni will still be there and a year will fly, trust me. You have to start to live for now, in the moment, that is the only way to heal and deal with what you are going through. Accepting you are ill is not giving in or giving up it is being realistic and giving yourself permission to heal. Since having to give up work I struggled with so much, especially my identity as I had put so much into my career, who was I without it? Every aspect of my life and the balance in my relationships changed, but change is not for the worse it's just different and once I gave up looking back and looking forward (and stopped to trying to control the uncontrollable) and take a breath I learned so much, especially about myself. It is not the end, not working and living off benefits was my idea of absolute hell too but it's just the way things are right now and I've learned to accept that and not judge myself. It doesn't sound like your life right now is much fun, the pressure you are putting on yourself is too much, you need to take a step back and nurture your body to give it the ability to fuel the life you want. A life with illness is not a life without a future or without hope you just need to be open and redefine what you see life as. Please look after yourself. Take care. Siobhán

    1. I just read this thought of you

  2. I just want to echo the comment above. I got ill a couple of years after uni, aged 24. I was working full time at the time and have never been able to return to work. However, I feel that the fact that I didn't ever try and go back has meant that I minimised the extent to which I got worse.

    To really get to grips with managing a condition like this you need space. Not returning to work gave me that space. I was quite unhappy to start with and I would say it was like a grieving process.

    Gradually, I have accepted the condition. This has lead to me being more proactive in managing it, meaning the symptoms are at least under control and I've not got any worse for about a year now. Accepting my situation also motivated me to get the support I needed; applying for benefits, getting a wheelchair etc.

    Now, I have reached a point where I can ignore all that is said about disabled people who cannot work. I know my own worth as a human being and I know that I contribute to society in a positive way.

    In addition to helping you get your CFS under control, taking a year out could help you plan extra help and support you might need when you return. With some time and space, you might be able to think of things you haven't thought of before, do some problem solving, find ways round the things you find difficult.

    I found life so much easier when I took the approach of adjusting and adapting, because it meant I realised how much I could still do.

    Perhaps the decision as to whether to remain at uni or not is something you could explore with your psychologist? I know it is a really hard decision and I wish you loads of luck. Whatever you decide, CFS does not have to mean that your life is over.