Friday 24 April 2015

What I learned from my relapse

Two big realisations have come from my "university relapse".  They are both things that I should have been told right in the beginning when I first became ill.  But that's the problem with M.E, so little is known we have to find everything out for ourselves!

You never truly recover from M.E.

Up until my stint at university I refereed to myself as recovered partly due to wishful thinking, partly because I had been mislead to believe that this was possible.  When I first got ill the children's specialist who saw me (about a year into my illness) told me that most children with M.E. recover.  That was all the hope I had been given, but I have clung on to that hope!  No one had ever told me otherwise, so I believed it, it's only natural to do so!

Every time that I have a relapse - mild or severe.  I take to the internet, to try and research my illness a little more, to see what is out there that wasn't the last time I looked.  This time, there was a lot of information on recovery.  I had never really got my head around the statistics of recovering from M.E.  There always seemed to be conflicting information, and I suppose I wanted to believe that I would truly recover so I didn't think much more about it.  Form my recent reading though it seems that most people will always have M.E. to some extent.  If a person is lucky enough to be unaffected by daily symptoms, then they are just mildly affected.  (We have a big issue with the term recovery in the M.E. community, people interpret it in different ways.)

The repercussions of this are that I need to start living my life and stop waiting for a time when I am fit and healthy.  I have assumed that one day I will get my life back, and have time to relax and soak everything in.  In the mean time working overworking so that my "future healthy self" would have the best life possible.  This type of thinking needs to stop!  Its time to start living for the now, and appreciate life for what it is, rather than waiting for an uncertain future to materialise.  I can do that, I have a nice life, and nice friends and family.

Progress that has been made can be lost overnight  

The second point is perhaps more important, it is that no matter how much I recover I will never reach a safety point.  A point of no-return is fictional with M.E.  Pacing and planning will always have to be a major part of my life, no matter how well I feel.  In other words now I have M.E. and always will do whether my ability is 99% or 1%.

Before I started university, I had a gap year to solely work on improving my health, I made vast improvements over the course of about 15 months and I was loving life.  After being ill for 6 years and being dragged through my "compulsory education" and A-levels I now had time to focus on me.  By the end of the year  I was playing badminton once a week, walking about 3 miles a day and volunteering for 3 or 4 days a week for between 2 and 4 hours.  For the first time since the start of my illness I felt well, strong and positive, even in control of my health.  Every medical professional that I saw as I was trying to decide whether to go to university or not encouraged, even persuaded me to go.  No one ever suggested to me that the recovery I had made could go backwards.  Specialists had always implied that progress was undo-able.

From this I have realised that I need to appreciate my health at the level it is at, and respect the fact that it can improve or worsen with very little warning or adjustment from me.  I should try to do everything that I can to give myself the best chance of a good life, because the future is uncertain.  I know that I can't bank on maintaining my health, no matter how much I have "saved up".


11 comments :

  1. You're so right to live one day at a time, best way. But it is possible to recover especially when young. I know this to be true because my sister in law who was ill for many years and definitely had ME recovered. She has been completely well for over 14 years now, living a full and active life. No symptoms. So there is always hope of better things to come. X

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  2. Yes you do live and learn! It's a shame when medical proportionals are in such denial about the disease though! If I hadn't been told by multiple doctors that it would be fine, then I would't have gone. Several doctors suggested it to me before I was ready, they were the ones that even put the idea in my head. If only they could see me now! I hope that you are having a lovely day today! :) Thank you for the support as always, you are such a wonderful person! xx

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  3. Just thought I'd mention she spent years bed resting and doing absolutely nothing. It worked for her. Rest is key. Xxx

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  4. Thank you for your advice! I believe that rest is key too, recently I have been researching how to "recover" on the internet, and have heard so may stories similar to this. I do think that once you have M.E. there is always the chance of a relapse, so because of this I don't think that you can ever truly leave the illness behind. However I am convinced that recovery in the way that you are describing is possible. I just need to stick to my gut instinct, and not become tempted to do too much! I enjoyed reading your comment, recovery stories are the best! :) Xx

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  5. Great post Jenny. I am sorry to hear that you relapsed after making so much progress but it's good you can see the positives and learn from the experience. It's unfortunate that we often have to learn the hard way as medical support can be so lacking. However, I have every faith you can return to that place where you considered yourself recovered. Funnily enough, I have a post scheduled for tomorrow about fibromyalgia and recovery. I agree with you, once you have these illnesses they are always there lurking in the background. Even if you manage to achieve being symptom free I don't think that means you are free of your illness. It can return and will return if you don't live "the recovery lifestyle". I put that in "" because right now I have no idea what that will look like for me and I don't want it to come across like I know what I'm talking about. All I know is it will be very individual but life will have to be very different and taken at a much slower pace.

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  6. I completely agree with you! I like the phrase "recovery lifestyle" I might have to steal that one from you. Where I've gone wrong in the past is thinking that I was "recovered" and then going back to my old lifestyle. But what I need to realise, is that it will never be suitable for me again. Although I may be somewhat "recovered" in the future, I will always have to live a lifestyle that is mindful of my illness history. Some of the most spectacular recovery stories that I have heard of recently, still say that they have to incorporate rest days as part of their week. I hope that you are as well as possible today Donna! :)

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  7. Thank you Jenny. It's a great phase but I can't claim it as my own as I stole it from Dr Bill Rawls (author of suffered long enough) :). Use it all you like. Another thing I love that Dr Rawls says is the phrase "patient persistence". That's the key to feeling better. Working at it every day and seeing changes over the following months and years. Rest is so important isn't it? Today is a good day for me. I've managed to get up, walk my dog, come home and make my lunch and still feel okay. I feel very accomplished as normally I'd be feeling unwell at this point. Yet I'm now lying in bed because I know that to be okay tomorrow I need to allow my body time to rest too. It's taking time to adjust to that new way of thinking and switch off from the desire to be "go go go" all the time. It's a constant learning process but I do feel like I am getting there. A bad pain day for me now is what I would have considered a good day before. I am thankfully in minimal pain (to the point I don't even think about it) now but the littlest bit of stress can bring it back so I have to be mindful of all that I do. Have a great week :) x

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  8. I'm so glad that you are generally feeling better at the moment! I've also been improving simply by using rest. I have no idea what my recovery lifestyle will look like when I'm there, but I suppose in a way I am living it now and the key is just to keep doing what feels right and never stop... it will lead you to wherever you need to be! Keep doing what you are doing! :) x

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  9. Exactly. I think one of the main things is listening to our own intuition. If it feels right, keep doing it like you say. There may be setbacks along the way but that doesn't mean it's not working. Patient persistence :)

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  10. So sorry to hear of your relapse, it must be hard to stay positive when you aren't feeling good and you don't know for how long, or what's next. I'm so impressed with your ability to be straightforward, honest, and positive despite the setback.

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  11. Thank you so much Julie, I love your blog - you are a knitting inspiration!

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