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..