Wednesday, 22 January 2014

Suspension of studies due to illness

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.

11 comments:

  1. I'm so sorry about how you are feeling I've been there and to be honest I was very surprised how easily I adapted to being ill once I gave into it and accepted the need to heal. Since becoming ill I have realised that I've been there for the people in my life in a way that would not have been possible had I still been working. Many of my close friends have thanked me for the advice, insight and support I've been able to offer them, advice and insight that I have learned from my illness and for that I am grateful to it. Yes that sounds strange, to be grateful to the one thing that took all I held dear to me but I have learned that every turn in life will provide you with a new purpose, maybe not the purpose you felt you had but a deeper richer one. Your blog is valuable and I have no doubt that your posts are of value to those who read it whether they comment or not. I feel for what you are going through, it is a huge adjustment but hang in there this feeling will pass, I promise you, as you look after yourself new paths will become apparent to you in time. Take a breath and a step back, this awful illness can encompass you, stay strong and look after yourself you are not alone. Siobhán

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    1. Thank you very much for your kind words. I'm glad it has enabled you to be a support to others :) It is a very difficult time, but I am confident this must be the most acutely difficult part- I will adjust, move on and things will gradually feel easier, and before I know it, I will be returning to finish my course :) Thank you, I appreciate it, Jess X

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  2. Hi huni I am going through the exact same thing as you have you an email address? xx

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    1. Hi- Sorry to hear you're going through the same, but it would be good to chat- please e-mail me on jess.cfs.blog@gmail.com or message the blog's facebook page facebook.com/jesscfs and I will add you from my personal account. Gentle hugs, Jess XX

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  3. hi huni do you have a Facebook account so I can add you on your profile? Xxx

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  4. I'm so sorry this has happened, I know several people in the same position and I can only imagine how frustrating it is. I really hope you can get some good quality rest, and recover some and soon be back to a better state health wise. Stay strong and find some good TV to keep you from going insane (that's what I do!)
    Sending hugs, Hayley-Eszti

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    1. Thank you so much :) I'll definitely be getting very well acquainted with daytime TV ;) lol XX

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  5. Sending hugs. You are right in your comment above. This time right now, this will be the worst. Having to face the illness head-on.

    Although I haven't worked since I became ill with ME, I went through this after we moved house and away from my old job. Before that I could just pretend I suppose that I was still sort of living the same life...but once we moved I was faced with just the ME, day in, day out. I remember thinking, 'Is this my life now, with no end in sight?' I moped about for a couple of weeks. Then I made the decision that if this was my life, I needed to make the best of it. I put all my efforts into making my life easier and focussing on what I could do, not what I couldn't.

    You could look at this time out as an opportunity. You are free to create a routine that works for you. I feel worse in the mornings, so I always rest in bed then. I find it gives me more energy during the rest of the day. You can use this time to find out what works for you.

    You could grab yourself some comforts that you can enjoy at home in bed. Try http://www.healing-boxes.com/

    You could consider using the time you are able to not rest to do things you don't otherwise have the opportunity to do. Are there some films you've always wanted to see? A box set you could watch at your own pace? Books you've been meaning to read?

    Having some low-energy things to look forward to in-between resting might help you feel less like you are missing out and being left behind. You are just travelling on a different path for a while.

    Hope that helps and that you are able to get some improvement over the next few months.

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    1. Yep, it's going to push me to have to accept this illness at last, and it will be a big change in lifestyle, but I know that it's necessary. Suffering less has got to be a positive thing too!

      I will definitely search out those little low-energy things I haven't had time to do in the past- thank you :)

      Thanks, that's a nice way to look at it :)

      I really appreciate your kind words and advice. Take care x

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  6. I had to walk away from my PHD and my PGCE because of this stupid illness. Doing much better now, but i can never go back to academia. Its too demanding, mentally and physically. I hope you have better luck, i truly do.

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    1. I'm so sorry you've had to walk away from academia, that must have been enormously difficult for you.. I'm really pleased you're doing better now though! Thank you for your kind words, I really hope I'll be well enough to return and finish my course!

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