I was going to wait until after a meeting tomorrow/another meeting next week to post this, but now just seems like the right time. If I do a massive U-turn (v unlikely) then that would be brilliant, but this certainly reflects where things stand at the moment, unfortunately.
The time has come for me to accept that I've got too ill for my course right now. My body is failing- it can't cope any more- *I* can't cope any more. I'm asking too much of my body and my health is deteriorating with increasing momentum over time. I can't expect that to change without changing what I am expecting from my body.
I saw my main consultant the other day and he advised time out from Uni. I'll be honest- I was absolutely gutted. I'd been really hoping he'd be fine with the idea of me just cutting down my hours and staying a bit (although deep down I do know I'm not really well enough to even do that), but he was clear that the time has come for rest. He has been supportive of me staying until now, so I totally respect that the call had to be made at some point, and now is that time. Everything is incredibly physically challenging at the moment, my body is the unhappiest it has ever been, my condition is wreaking havoc, my body is self-destructing. I hate ME/CFS for doing this to me.
The longer I push and the further I let my condition deteriorate, the harder it will be to make any improvements, and the longer it will take to get better. I have to step away and give my body chance to heal to some extent. My consultant has said that he accepts that it's going to take me a lot longer to get to the end of my degree, and that I need to accept that too. Logically it makes sense, I understand the reasoning and I am fully aware how ill I am and how bad things have got, but emotionally it's all still difficult to accept.
Time out is going to be hard. It will be easier on me physically (although I'm doing VERY little at the moment and every day is still a HUGE challenge to cope with because of constant symptoms), but psychologically it's going to be very challenging. I will be a full-time ill person- exactly what I've been trying to avoid all these years. My life will be on pause. Life will be carrying on without me. I will be falling behind my peers. My friends will be living life and I'll be barely living at all. The thought of it scares me and is frankly heart-breaking.
I feel deeply disappointed. I feel terrified of the unknown. I'm really going to miss everyone while I'm away, it's going to be 8 lonely months, and I'm scared everything will have changed when I get back. I'm terrified of joining a new year group; just the idea of going into a lecture theatre with a whole new group of people and not knowing who to go and sit by makes me want to cry. The thought of my friends graduating and leaving me behind to face finals upsets me.
I have to do what is right for my health though, and with the state my health is in at the moment, I simply don't have any other option. I cannot attempt to keep up. It's all got too difficult. I'm just not well enough.
I feel like I'm letting go of my purpose in life. I feel like I'm just going to disappear into the shadows for months on end. I'm going to have months on end of nothingness, interspersed with random hospital appointments.
My biggest fear is that it won't help, that I won't get better, that I'll end up stuck as a full-time sick person (no offence to those that are, but I'm sure you totally understand that it's not a life that anyone would choose!). What if I'm just never well enough to get to the end and get the credit for all my hard work? What if I'm never well enough to cope with the career I'm aiming for.. Or any job for that matter?! I just have to hope my body will be able to heal itself, at least to some extent- I'm not expecting miracles, although they'd be nice- I just want to be well enough to cope with Uni again in September, even if that's not full-time and with all the support I require now. That would be ok. I just want to be able to get to the end one day. Ideally sooner rather than later. But I know I can't push.
I feel like I'm going out into the unknown. Focusing 100% of my energy and life on getting better. My illness has been an inconvenience I've tried to ignore up until now (although it's been fairly impossible), but now I'll have no distractions. I have to face my reality.
I may be really ill now but it's a starting point. It's where I'm working from. Hopefully I will start to see stabilisation and then steady improvements. Hopefully the function I've lost over the last few weeks, months and years will start to be regained. That's the aim. Now I just have to hope it becomes reality and do everything in my power to make it happen through positive inaction. Doing nothing and resting is my only weapon against ME/CFS, I admit it's a bit of a naff one, but science hasn't come up with anything better yet, I just have to hope my body has it's own resources to get this beast of an illness into some sort of remission.
The future seems bleak. The future is scary. But I am finally putting my health first and hopefully things will start looking more positive at long last.
Wish me luck people, I need it. And please keep in touch, I need that too.
I wouldn't have got this far without all the support I have had so thank you so, so much to every single person who has helped me keep going over the last few years. I really am so grateful to you all.