Friday, 20 December 2013

My birthday, reflection & ongoing relapse

I turned 22 very recently; I had a nice birthday, but my illness did interfere with the day considerably. I was feeling unwell and exhausted, spent a lot of the day either in bed or resting on the sofa, and didn't feel well enough to go out for a meal to celebrate, but I was well enough to open and appreciate all my cards and presents, wear some new clothes, read some lovely messages I received from friends and family, watch some TV and Elf (for the second time in 2 weeks- it's mine and my brother's favourite Christmas film), blow my candles out and eat cake and other nice food. So I still had a nice day!

Now it's the early hours of the morning and I can't sleep- perfect time for a bit of reflection..

I have now turned 22. Another year of my life has been blighted by CFS. I have been ill for 4.25 of my 22 years, that's 19% of my life.. 17% of my life with an actual CFS diagnosis.. Ouch.

I struggled last year with the thought that I had been ill for my 18th (although undiagnosed at the time) and was still ill for my 21st- 2 big landmark birthdays.. This year it's not hurting because I feel like it's a particularly special birthday, it's hurting because my condition has continued to deteriorate, and it was my fifth birthday ill. I'm in a much worse state this year than I was last year. I can't help wondering what my health will be like a year from now. Things may be better, things could be worse. Not knowing and not being in control of this is difficult.

I have finally dealt with some of the practicalities of chronic illness this year, now that I'm finally coming out of denial and realising I'm in this for the long-haul. I have certainly not accepted that I will be ill forever, but I'm now realising that my road to (probably relative) recovery will be a long one- I'm not going to wake up in a matter of days or weeks, or even months, completely well. This understanding has allowed me to move forward with sorting out a few necessities- I bought a mobility scooter, I got a blue badge, I've applied for PIP and I have a significant level of support at university- not that I had much choice, denial wasn't an option, my legs were giving up. These things have made life more manageable, but unfortunately none have stopped the progression of my condition. I had a couple of months reduction in pain and some other symptoms when I first got my mobility scooter which I was incredibly thankful for, but as things got worse, everything has unfortunately got just as bad (if not worse..). I'm obviously still grateful for my scooter though, because I would now be housebound without it.

I still find it all quite difficult to get my head around. The future is so uncertain for me at the moment. Right now I am incapable of living independently, and that realisation is not an easy one. I had to leave university early this term because I was burning myself out, my body was screaming at me in every way it could think of and my doctor eventually convinced me going home was the sensible course of action by saying he thought the likelihood of me collapsing again if I stayed while this ill was high, and I would be at risk of injuring myself which would put me out of action for much longer. He also said that I would stand a much greater chance of being well enough to tackle the rest of the year if I had additional time off. As it happened it was definitely the right decision, because I took another turn for the worse within a few days of coming home, and my level of health remains very poor.

I fully intend to return to university in January, partly to give me the opportunity to talk through my options with my healthcare team (and department). I am hoping I will be well enough to cope with the demands of my university course in January with no further adjustments, but I am also very aware that it's possible I won't be, given that I'm now basically halfway through my extended holiday and am so far feeling no better. I'm also aware that I will be returning having missed a lot of the previous term and am therefore likely to face difficult questions. But I have people who I know will be willing to help me fight my corner, which is incredibly reassuring. I hope to be able to stay part-time at least, because that would be a lot easier psychologically than complete time out, and would keep me in practice, in touch with friends and my medical team, and probably get me through my course quicker than if I have to have complete time out, but it just depends what I'm capable of.

So what's the situation at the moment? Well.. I'm having to be careful to not do too much, and that involves limiting basic things like sitting up some days. Things are quite physically difficult at the moment- getting properly up and dressed is just not possible/bearable some days but most days it's just a challenging, tiring, lengthy process right now. I spend most of the time that I'm out of bed on the sofa and thankfully my mum has been around to fetch anything out of reach, get me lunch, dinner, snacks and drinks. My independence has slipped away a bit at the moment, but I'm seriously hoping I'll get it back (soon please!!). I've managed to get out a few times thanks to being at home with my parents to drive me around and my mobility scooter Poppy who is getting me around brilliantly still. I get really tired when I manage to go out at the moment, and get payback so have to rest afterwards, but I can accept that. Overall I feel like I've taken a huge step backwards though to be honest.

Relapses really are vile things. They steal away abilities. Losing ability is so quick, and getting function back is practically impossible while I'm this ill, so it's really hard. I'm lucky I seem to always manage sitting up again once I've got over the acute phase of a relapse, because having to be constantly lying down is really difficult to live with. When you know you are quite likely to suddenly need to 'get flat' it's difficult to do anything really. I'm already past that phase with this relapse thankfully, although standing up is still a bit dodgy at times and I wouldn't be able to be sat up all day at the moment- I'd be shattered and ill the next day! My system just can't cope with any additional challenges right now.

I feel very 'disabled' at the moment, which is really difficult. I am really hoping I will recover further from this relapse though. It was a bit of a 'double-dip' relapse, which I've only had 1 of before, and that one took a while to get over too, so I'm hoping there's still reason for hope that I will see some further improvement. Although it seems likely I won't get back to my pre-relapse level, which was already difficult.. But only time will tell.

I still don't even know what the cause of this relapse was, and I know that's irrelevant really but not knowing is frustrating, and you can't help wondering whether there's something else going on- an underlying infection or a deficiency or something- I know deep down that I'm just wishing there was something treatable going on though.

I just want to know whether things will get better. If this illness is going to turn out to be truly progressive (very unlikely, but possible), I would rather know now, but I very much doubt anyone is going to be able to tell me. My illness has taken an unusual course so far, ME/CFS getting constantly worse year-on-year for over 4 years is not the norm, so I think it's fair to say no-one is going to be willing to make any predictions about where things will go from here. It also makes me question whether my diagnosis is the right one or whether it's something else and what my prognosis would be if it were found to be something else. At least with a diagnosis of CFS there is still hope for improvement in the future, so I do hope it's right and I do experience improvement, although obviously preferably they would find out it is actually something curable or even just properly treatable, in which case I would be absolutely ecstatic.

All I want is to get significantly better, to enable me to be independent and get on with my life.. I have a huge amount to be grateful for in my life, but the big piece missing is my health. I just hope my dream of significantly improved health does one day (ideally soon!) come true..

3 comments:

  1. Hi there, it may feel like you have taken a huge step backwards but to me it sounds like you have made a lot of progress emotionally and come to terms with a lot, you use the word accept a good bit too! This is great as the physical side of things will settle, react and adapt to your changes they always do, I'm not saying there won't be relapses again, there will be, but the more that you accept the way things are the less you push too hard resulting in a crash.You ask if things will get better? They ARE getting better, every day though this can only usually be felt in hindsight; I view chronic illness like a huge stairway, you're always going up but there are plateaus along the way, some are longer and wider than others, some steps are higher than others (giving you the feeling of going up and getting better), but a plateau will come after each rise. Use these plateaus to rest and recover and prepare for the next rise because IT WILL COME and you are ALWAYS going up even though it may not feel like it. Happy Christmas, Siobhán

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  2. Hi,
    I'm currently suffering with an undiagnosed illness at the age of 17. I've been in and out of hospitals for over a year and its looking as though I'm going to be diagnosed with CFS or Fibromyalgia. I'm facing the prospect of having my 18th birthday ruined by this as its getting close now.
    I'm so angry about my position, but I suppose more upset, it made me cry so much reading this post because I know I may be facing the same soon (just been accepted into uni but don't know if i'll ever manage it, just getting worse). I'd really like to know how you cope, because i feel like I'm losing control.
    Amy

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    Replies
    1. I'm really sorry to hear that you're going through such a difficult time. I do hope you get a diagnosis soon, whatever that diagnosis may be, and then you can move on and work towards acceptance. Neither CFS nor Fibro are easy diagnoses to come to terms with, and I'm sure you're already aware that there is no quick fix for either illness, but please don't lose hope. A lot of people live very fulfilling lives with these illnesses. You're in a rubbish situation- there's no denying that- let yourself feel however you want to feel about it- it's natural and normal and understandable. I hope you manage to cope with uni- please read this post: http://jesscfs.blogspot.com/2013/06/tackling-uni-with-chronic-illness.html if you haven't already for some advice. Please also know that it isn't the end of the world if you have to delay things and not go this year- and I know it will feel like it (I'm suspending studies at the moment and it's been very difficult for me emotionally).
      I cope by writing down what I'm going through to make sense of it, I talk to other sufferers on twitter to feel understood, I talk to my friends and family to feel supported and loved, I try to use some energy on doing things I enjoy and that will make me happy. I ride out the difficult times, knowing I have been through similar before and things have always seemed brighter again- you will do the same. I feel like I've lost control of my life too, and that's because there's little either of us can do to control the illness that's intruding on our lives, but with time, things will get easier, and to some extent you learn to live with the lack of control and work to maximise the control you do have (Rest, Pace, Look after yourself!).
      You're likely to have a difficult journey ahead of you, but please know that a lot of people do improve a lot with time, don't lose hope. I'm always here if you want to chat- either message me on facebook.com/jesscfs or e-mail me on jess.cfs.blog@gmail.com Take care, Jess x

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