Sunday, 12 January 2014

Acceptance

I've been finding accepting my illness difficult recently. It's fairly normal for me to feel this way after a significant reduction in ability. It just seems unreal and unfair and I just can't get my head around the fact that this is how my life is for now.

I still see the state I'm in as temporary, and I mean properly short-term, not just being hopeful that things will improve in the future, which would be a helpful attitude to have. My current attitude makes it difficult for me to contemplate making big decisions about things like my university course, because I'm still thinking that there could be positive changes just around the corner. Accepting that that's now not particularly likely is really difficult. I am now living with my new level of function following my relapse, I'm not sure I'm going to come out of this relapse any further, for now. I've been significantly more ill for 8 weeks now, if I was going to bounce back, I would have done by now, judging from prior experience. I hate admitting that..

Talking to my psychologist the other day, she was saying that the people who have eventually made the most progress with their condition, in her experience, were those who had learned to work with their condition instead of constantly fighting against it. It makes sense- it gives your body a bit of breathing space to be able to recover rather than it being pushed to the limit (and beyond) all the time. But to work with the illness I have to accept that it's part of my current reality, and accept it's current severity as well as it's existence. I'm finding the prospect of that hard.

I need to feel more in control of my condition and therefore I need to recognise what I can do to influence the day-to-day symptoms my condition causes. I can rest, I can take my medications regularly, I can attend all my appointments, I can make sure I eat a high-calorie high-protein diet, I can be kind to myself and focus on looking after myself. These things are things that I have control over that can help me have some level of control over my condition. Some of these are actually made more difficult by the condition itself, but I have to accept that and also accept that I will never have absolute control, but I do have some control.

I need to see that there's a middle ground between fighting this illness every step of the way and completely giving up. I need to learn that I can do some of what I want to do, but not all of it, probably only a minority. I need to learn self-control and how to say no, for the sake of my health, even in difficult circumstances. I need to accept that I need to respect the limitations this illness inflicts on me.

What I find even harder to accept than the illness' effect on me, is the effect it has on all those around me. I keep having to cancel things at Uni, which has an effect on other people, I'm having to rely on others to do things and I just can't contribute in the same way that I used to. I hate that, I feel like a parasite- living off and draining the resources of others.

I have a few appointments coming up and I'm trying to stay hopeful but realistic. I need to have reached some level of acceptance of where I'm at to be able to share my current reality with those looking after me medically. I need to get across the devastating effect this condition is having on me to the consultant overseeing my CFS care, so they can understand where I'm at, even if there may be very little, if anything, that can be done about my deterioration. I'm also seeing an upper GI surgeon for the first time- I need to not let my CFS get in the way of me getting all my symptoms and their severities across to him- I need to find the energy to write a list of symptoms in advance to jog my memory in case of cognitive problems or speech issues resulting from fatigue. I don't like hospital appointments- but they're my only way of possibly getting any answers- I need all the help I can get at the moment, so I need to accept that they're part of my current reality.

I came back to Uni after an extended break, and initially tried to rejoin my course without taking my deterioration into consideration. I pushed myself through day 1, and unsurprisingly ended up in bed, very unwell, missing days 2 and 3. I contacted people about course adjustments, realising there was a definite problem, and returned for a lecture on day 4 and an afternoon on day 5 (in addition to a medical appointment). It's now the weekend and I've been feeling really ill- I could feel that I'd seriously overdone things on the Friday, but it was still a lot less than I used to be able to do, so I have found the level of payback frustrating. Even though I know I'm significantly more ill, having it so blatantly proven to you, is undeniably difficult. The discussions about my University course are going to be very challenging, but will hopefully be the start of a change in attitude. I hope I will start being kinder to my body, fighting against it less, and will start to push it to it's limits less, giving my body a better chance of making some improvement.

That being said, I was in bed a majority of the time for 4 weeks, and it appeared to do me very little good at all, which makes the idea of taking a step back and doing less, to leave my body with some spare energy to heal, even less appealing. I need to recognise that I was quite possibly still pushing my limits while in bed though- I was severely unwell and was pushing myself by sitting up as much as possible, I was listening to music and watching some TV, I was venturing downstairs and eating. All these things are tiring while this ill, so perhaps I was still not allowing myself extra energy to improve. I had a few days where I knowingly really pushed my limits, so some of the time in bed was spent recovering from additional flares/payback, rather than the underlying relapse.

I know I need to accept this illness and my current reality, but I keep finding myself feeling cross with myself- my body and my condition- for not just getting better and allowing me to do what I want. I need to learn to be ok with being ill. It's been 4 and a half years, I need to accept that. Relapses always take me a step away from acceptance, because they're incredibly difficult- physically, mentally and emotionally- this relapse was particularly brutal, so I suppose I've still got a long way to go before reaching my goal of acceptance.

18 comments:

  1. Excellent post Jess! It is so true - adjusting to accept a new level that is lower than before is always depressing. Somehow acceptance of a steady state is easier. Every dip I take, I hope will be the last. Here's hoping your "low" turns out to be just a back to college bug and in a few days you'll be back up to a more acceptable level.

    In the mean time - healing thoughts and hugs xx

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    1. Thanks very much for your comment :) Unfortunately it's definitely CFS/activity-related problems rather than a bug, but I just need to learn to accept that this relapse has happened and move on- easier said than done ;) Totally with you in hoping neither of us ever experience more dips- we can only hope! Take care and thanks again X

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  2. Everything you do and feel is your choice even though sometimes it is such a reflex it feels like it is not. You need to give yourself permission to stop and just BE. If you read back on your posts you know what you need to do; you say it and refer to it frequently so you just need to decide once and for all to just do it. Everything else can wait, just make the choice to stop and heal, it can be that easy, the struggles you feel hinge on guilt at not performing to the expected level so remove the expectation. It sounds like the pressure is coming from within, it really can be as easy as letting it go and saying stop to the negative thoughts. You're not well.....if it was anybody else I'm sure you would tell them to take time to heal...so why not yourself? Please listen to your body and give in to the rest; acceptance is not failure or giving in, it's realism and being honest about your needs first and foremost. So many lessons are learned through acceptance ultimately what is learned is that which is the most important to us; very back to basics, the simplicity in life, the tiniest joys found in the most obvious places and most importantly to live in the moment; if you keep striving for what is happening tomorrow you lose the opportunity to live right now. I'm not saying the change is an easy adjustment but the actual choice to accept is easy, you just decide and stick to it and every time the niggling voice and pressure surfaces you calmly tell it 'not now' and get on with your day. Stay strong. Siobhán

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    1. Thank you so much for your insightful comment- I always appreciate hearing your thoughts :) Take care, Jess X

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  3. Brilliant post Jess. One of the key things in my recovery, in fact probably one of the earliest things I had to come to terms with, was acceptance, and learning to work WITH my symptoms rather than against them. I'm also interested in what you say about a high calorie diet as well as high protein. I follow the high protein rule buthad never thought of high calories as being beneficial-of course I guess more calories = more energy so it can only be a good thing. You've given me something to think about anyway :)

    Take care fellow Spoonie!

    Jen

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    1. Thanks :) and it's definitely interesting to hear that you found working with your symptoms rather than against them beneficial.
      In terms of high calorie diet, that is simply because I'm severely underweight (as a result of the CFS) so it's less something to help with the CFS, more something to treat the effects of it, if that makes sense! But yes, calories from the right sources must help with energy levels :) Take care, Jess X

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  4. Hey Jess,

    It sounds like you've looked at diet being an issue. Have you looked at your sugar intake and the possibility of a Candida overgrowth? Once I treated those, my fatigue got about 25-50% better.

    Jevin

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    1. Thanks for the suggestion- I have tried a sugar-free diet in the past, and I seem to remember it did help a bit (although I was moody!!) but it's unfortunately not really an option at the moment as I need sugary things to keep my calories up.. Glad it has helped you though! :) Thanks again, Jess

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  5. such a relatable post, we need to accept what is and let our bodies heal and recover, but that can de difficult at times. Since I have accepted and stopped feeling like my body was winning I have felt some improvements, the right attitude is everything! I will always feel angry and hate what had happened, but at the same time I need to just get on with it and stay hopeful and positive.
    I hope 2014 is a good year for you, and brings you improvements.
    x Hayley-Eszti

    www.hayleyeszti.blogspot.com

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    1. Thanks for your comments and it's good to hear that acceptance has helped you :) "I will always feel angry and hate what had happened, but at the same time I need to just get on with it and stay hopeful and positive." TOTALLY agree with this statement!! Take care, Jess X PS- about to take a peek at your blog ;)

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  6. Hi Jess

    I have had CFS for quite a while now. But Im positive about recovery and know quite a few people who have got better and been part of a recovery clinic, tons of sessions etc.

    The thing I will say about acceptance I have seen - and learned - is that it is not 'giving up'. When you use the phrase 'giving up' - it suggests to me that life is a constant fight, and you're only choices are to fight - or give up. I suspect it may have been this way before you were ill also, but to a lesser degree. The question is - what are you fighting against? Who are you fighting for?

    When we start to unpack these thoughts it often becomes clear that a lot of what we think we 'want' to do are in fact ideas of what we 'should' be doing and how we 'should' appear from the outside ie being 'successful' etc. Illness like CFS do affect your life and what you can do - but just make sure that when you are 'fighting' - you are really doing it for yourself - and not for some implanted ingrained ideas of obligation for others such as our parents or other people in our lives...

    I would be willing to bet that deep down you are yearning just to stop, be yourself and truly listen to your body. THAT is acceptance. x

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    1. Sorry I didn't reply earlier, I did read your comment at the time.. Interestingly enough I have now in fact stopped and am truly listening to my body and I do feel much more accepting! Strange! I find it very difficult to find the balance between fighting and stopping. I've always pushed as hard as possible, and it's just totally the wrong mentality with CFS, you just end up self-destructing.. I'm sorry you suffer from this dreadful condition too, but I'm glad you're positive about recovery. Always hold onto hope :) Take care x

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  7. Hi Jess sorry that post above tone sounded a bit off at least at the start...I do totally sympathise with what you say...I saw my doc the other day and he suggested that maybe I should learn to 'accept' this was how it was and try to live with it - and I felt like I wanted to kill him! So I would never say give up hope or stop looking for a way through...It just worries me when I read people being cross with themselves and their body because its not your fault or your poor old body...if there is ever a time when it needs to be heard - its now - it might be trying to tell you something...be good to yourself...:)

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    1. Thank you very much for both your comments- I didn't think the tone was off at all, I found your comments insightful. I definitely agree that acceptance is *not* giving up but separating the 2 things mentally can be difficult. I know I'm fighting with my body at the moment- and that's the last thing my body needs- but I am aware that I am and I'm trying to move on from that.. it is easier said than done though, as I'm sure you appreciate! Take care and I hope you can learn to accept your illness too! X

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  8. Hi Jess, thank you for this really insightful post. What you wrote really resonated with me, and I’m sure with many other people who live with chronic illness. You’re definitely not alone in struggling to accept your condition – after all, no-one would want to accept chronic illness and the challenges it brings. I try to see acceptance as more of a constant process happening alongside the fluctuations of chronic illness. At the moment I’ve just made the decision to reduce my university study to part-time as of the coming term. It was (and still is) hard to accept the deterioration in my health, but I’m hopeful that this will be help things to improve! I also really liked what you said about hating the effect your illness has on others. This is one of the things I find most difficult – like you said, it can feel almost parasitical, but I hope you can see that it’s not your fault :) I really hope that 2014 is kind to you and brings much deserved improvements! Katharine xo
    www.katharineandme.blogspot.co.uk/

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    1. Ridiculously slow reply- sorry, lol. But thanks so much for your comment. I definitely agree that acceptance is a constant process, it's never an end point for me, more a nice phase! I'm glad uni went better for you this term :) I know it's not my fault- but it still *feels* like it's my fault sometimes, because it's me with the condition.. Thanks :) Hope you're doing well lovely and 2014 is a good year for you too! Big hugs x

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  9. I cannot even tell you how much I feel for you. I don't know you or where you are but I wish we could hug right now. I feel like I moved from a place of fighting to a place of acceptance with my CFS maybe a year and a half ago. The fighting was too exhausting. I began planning out my career and schooling to facilitate nonconformist approaches that would better fit my needs. I am currently working on a project of turning the back half of my car into a napping place so I can hold down a job and safely feel like I can drive now! haha I appreciate your words.

    chronicallygrateful.blogspot.com

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    1. Thank you so much for this comment- it truly means a lot :) I'm glad you've reached a place of acceptance; acceptance makes it all much easier to deal with. Despite having had masses of support (support workers etc) throughout my course, practically with me full-time before I went on medical leave, I'm only really now accepting that I can't do everything the same as everyone else and need to take my illness into consideration. I'm glad you've come to the same conclusion :) The car idea sounds awesome- I love that idea! Hope it works for you! Take care x (PS- I will pop over and check out your blog!)

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