Back and Forth

When I was formally diagnosed with ME in January 2007 the printed information sheet my GP gave me said that ‘most people make a recovery within 4 years and those who don’t will probably be ill for the rest of their lives’.  It haunted me then and it haunts me now despite this idea being largely discredited since.

Four years seemed an impossible amount of time to contemplate being ill for. The six months I had previously been signed off work sick for felt like an incredible period to be ill for. I had heard the theory of ‘4 years’ while I was off sick but before a diagnosis had been made and just before I married I asked my husband if he really wanted to go ahead in the knowledge that this might, possibly, just persist for a while.  What if I *am* ill for four years, I asked.  I don’t think either of could comprehend it but it scared me silly.

Having first seen a doctor to report symptoms more than 18 months before my diagnosis once it was confirmed the taunt of ‘4 years or bust’ made me determined I was going to beat this illness.  I wasn’t going to let it win, let it rob me of anything more.  After all 4 years was a long time in which to get well and I wouldn’t feel this ill for all of that time because I would improve. Linear progression like everything else in life, no? Well actually, no.

Now here I am 4 years past my formal diagnosis having had symptoms for 5-6 years. It’s frightening to say it so plainly.

Pretty much everyone who is informed doesn’t say “most people recover in 4 years” anymore because it’s not been proven to be true.  But it still hangs over me because once it was a milestone. That one day I would be able to think back and laugh at the idea of worrying whether it would take 4 years to get me back to health.

In truth I made a small recovery after the big crash of December 2006 (after a disasterous phased return to work), a further small recovery when I started on D-ribose and had medication for pain control and then a further small recovery when I started LDN in December 2009.  But I’m still not close to being back to the level I was at before the big crash despite that in itself being pretty poorly. I still long to that level of ill because compared to now it would be such a relief.  I could drive, I could do physical things for short periods, I could do stuff – even if it left me exhausted and needing to rest.  Now it’s mainly rest without the doing.

It’s no wonder I’ve been feeling kind of down this month.  Combined with recovering from Christmas and festive exertions January is again a bust this year.  And my great hope of LDN, despite it giving me some improvement, a year on hasn’t given me as much as I had dared to hope it might.

Growler’s job is being made redundant in July and as the organisation winds down it’s stressful place to be let alone with the added pressure of finding a new job that is a) something he wants to do, b) pays well enough to support us both, c) hopefully is within easy commute so we can stay put and I can keep my supportive GP and d) with a bit of luck offers some flexibility for when I need extra care or if my condition were to worsen.

Lump into the equation that the British government is sharpening the knives for the disability payment I recieve along with not being well enough to make much of a meaningful income on my own and it all gets a bit too much.  I just seem to be waiting for life to start again and as the lives of family and friends along with the big wide world marches on with me sat on the sofa only able to watch.

I did find reading one of my favourite articles about coping with chronic illness a comfort.

We all have periods when we feel overmatched and not up to the struggle. But as long as we pay attention to the struggle, we will get through the day. We flounder when we set unrealistic standards, or cannot grieve for what has been lost, or cannot start each day afresh. Depression can be tackled despite the physical complications that try to drag us down.

In some moments I think depression is coming back to get me again but I’m pretty sure it’s just sadness, loss, grief, frustration, stress and anxiety about what the future holds.

Revisiting the site my GP used for the information sheet 4 years ago, which has been updated, has helped a little.  Now it reflects the vague complexities of what I am wrestling with in terms of prognosis.

What is the outlook (prognosis)?

In most cases, the condition has a fluctuating course. There may be times when symptoms are not too bad, and times when symptoms flare up and become worse (a setback). The long-term outlook is variable:

  • Most people with CFS/ME will show some improvement over time, especially with treatment. Some people recover in less than two years, while others remain ill for many years. However, health and functioning rarely return completely to previous levels.

 

  • Some people will continue to have symptoms or have relapses of their symptoms.

In some cases, the condition is severe and/or persists for many years. Those who have been affected for several years seem less likely to recover.

Improvement with treatment? Which they say is managing your sleep, managing rest, relaxation and diet? That improvement plateaued some years back for me. At least the “4 years or bust” has gone from their advice now.

But I feel a failure for still being ill after all this time.  I feel powerless because the only change I can effect on my health is acceptance and working to minimise flaring symptoms. That’s not recovery from illness as most see it conventionally. That’s surviving, that’s living as best as one can. That’s sucking it up and dealing with it.

I don’t quite feel hopeless, not wholly hopeless, no.  Hope is still one thing I do have.  Hope that things will change, that I will get better, that I am not to be lost in this mire of ME for the rest of my life.  Yet I believe that ME is something you have for a larger or lesser degree forever.  How do I reconcile these opposites?  Hope that I don’t really have ME – that it’s psychosomatic or an adrenal problem or a chemical inbalance and that all this grief and loss has been the cost of an oversight?

I don’t really know where I go from here other than to put one front in front of the other and keep going.  I don’t have any new plans of attack.  The only things left are desperate miracle cures and taking a year out from everything (everything that keeps me balanced and sane and happy) to try and do things differently but without knowing what might work.  That or winning the lottery and paying a doctor vast sums to tinker with my engine until I work again.

Most of the time I am coping and content in the small limited world I am able to inhabit thanks to a lot of buffering by my wonderful husband.  I do appreciate the small improvements since 2007 and have no wish to go back to that level of disfunction.  I’m just sick and tired of ME is all.

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16 Responses to “Back and Forth”


  1. 1 Cusp January 26, 2011 at 1:21 pm

    Oh its all so familiar and you put it very well. I reckon I’ve probably had M.E. for 35 years now … and I have managed a life in the periods where ‘it’ was at a point where I could do stuff (with rests) and all the ducking and diving; got married, did a degree, developed a career, had children…all that whilst never really being well in the same sense as other people…just well enough, active enough to manage those things if I was careful, very careful.

    I was diagnosed 10 years ago and really feel like I’ve tried everything that I feel is appropriate for me. There are those who would encourage me to still keep trying other stuff, other medication, other treatments but to be honest I’m sick of it all and none of it works very well so as long as I can get by I feel I have to be happy with my lot and grateful its not worse or like it was in relapse two years ago.

    Maybe 4 or 5 years ago I remember going to my GP and saying that I seemed to have improved from initial diagnosis (that was an understatement…being bedridden, unable to see or hear or speak properly was hell) and yet I had reached a plateau and what could he suggest to push me forward…and the answer was ‘nothing’ and ‘I dont know’.

    I was furious at the time but I guess he was just being honest. Sometimes things are just as they are and we have to try to accept and encourage those around us to accept too.

    Not a very uplifting comment I’m afraid but I hope it is as honest as your post….oh and incidentally…I think, from what I see/read…that you manage wondefully well (*)

    • 2 rachelcreative January 26, 2011 at 7:57 pm

      Thank you Cusp. Knowing it’s normal (in relative terms) is good and I love your comment. You remind me of what I read in Dr Charles Shepherd’s book where he talks about a glass ceiling that no matter what you try you just can’t seem to get past with this illness. Sometimes you break through almost randomly or perhaps with time but for most people you can get well to a point and then push it no further.

      Perhaps I should go back and re-read some of it but I’ve put off doing that for fear of being more confused (again) or at least not having any answers still.

      I’ve definately been dipping in mood recently and it’s helped to share. Thank you.

  2. 3 Shelli January 26, 2011 at 4:46 pm

    Your experience mirrors mine so well. I’ve been ill for four years now, too. I have had a series of crashes that I’ve never recovered from, each one taking me further down the road of disability. I long for the days that I originally cursed, those early days when I thought I was so miserable, and yet I could still do so much. I would love to get back to 50%.

    I don’t know what is in store for me. Nothing has been helpful so far. I’m desperate enough that I’ve been tested for XMRV (positive) and will be starting antiretrovirals soon. Yet, even that doesn’t offer hope for complete recovery. But maybe some good months? And then not quite as bad after that? Who knows.

    I guess what I’m saying is, you’re not alone, and thank you for voicing what so many of us are feeling.

    • 4 rachelcreative January 26, 2011 at 8:02 pm

      Thanks for that Shelli and I’m glad it struck a chord with you even if I’m not glad that you’re in the same, pretty-sucky-at-times situation!

      I almost want to be told definitively that this is my lot and I’m always going to have to fight this, or manage this to a larger or lesser degree. I don’t want that to be true of course and the idea is devasting in so many ways – but to be certain might help in many ways. Certain but with hope that new things may come along and hey maybe a sponteneous recovery one day! I can hope oh yes I can.

      Isn’t it a kick in the head to feel loss for those 50% days gone by?! Who woulda thought.

  3. 5 Eve Friday January 26, 2011 at 4:55 pm

    I just wanted to say, thanks for writing this. I read your blog via a feed reader, so don’t normally comment, but this resonated so much with me I want to thank you. I have sent a link to this to a number of people because, frankly, it could have been written by me, word for word.

    • 6 rachelcreative January 26, 2011 at 9:11 pm

      Thank you Eve and thanks for leaving the comment. I’m glad it reasonated with you although of course I wish you weren’t in a similar situation. It helps to know that sharing these things means something to other people so thanks.

  4. 7 upnorth January 26, 2011 at 5:46 pm

    What a heart-felt post that just rings true. I’ve had M.E. for over 8 years now. My hope for recovery fluctuates but for the most part I’ve stopped thinking I’ll get better. You write that “the only change I can effect on my health is acceptance and working to minimise flaring symptoms”. I feel the same way. It’s so frustrating that there is so little understanding still and so few successful treatment options out there. Take care

    • 8 rachelcreative January 26, 2011 at 9:15 pm

      Thanks so much for leaving a comment. Frustrating is a word I often use about living with ME. I have to remind myself that acceptance is not the same as giving up. Most of the time, now I’m getting pretty settled with the idea that ME is not going anywhere anytime soon, you just have to get on with your life and do the best you can. It helps to know it’s not just me. Thank you.

  5. 9 ashysheela January 26, 2011 at 11:01 pm

    Sorry you have been struggling. I also usually feel fairly content in my small world but it has been feeling less safe of late also. Today has brought up many issues you talk about in this post for me, but i have deleted my first draft of comment as it was getting far too long and i am always too long-winded when I am cognitively drained so I will blog about today and incorporate my thoughts there… I am so sick and tired tonight too. Let me off this wheel…

  6. 11 Dominique January 27, 2011 at 3:16 am

    I agree with upnorth. I have now been ill for over 20 years. I, like you, thought I would be well in a year, two, five, ten, and then realized it probably wasn’t going to happen.

    I have really come to a place lately that I realize I cannot change my physical circumstances. All I can do is to greet each day and do the best I can and be the best I can.

    I have recently decreased to 20-40% (as a result of a chemical poisoning) and am trying to learn to manage within these new boundaries. I think most days I’m doing okay. It seems to be those around me that are struggling with these new boundaries which then causes me to falter.

    My eye issue has been a struggle as well.

    But looking back at these twenty years, I can’t say it was all bad. I now have a monthly column, my blog seems to be doing well, I can ‘read’ (audiobooks) to my heart’s content, I get to see my daughter (thus far) once or twice a year, and I have a great home, friends, family.

    I really have come to a place that in many ways I am really blessed because I have come to see what is truly important – the little things like a sunrise or sunset, someone’s smile, puggie kisses, etc – and that I get to ‘see’ these things because I am in a much more ‘still’ place.

    It is not the way I would have chosen if given the chance, buy I think I can say, if ever asked, that I took what I was given and did the best I could with it.

    You’re creativity and blog have a profound affect on those of us struggling with this illness. I think you are making great strides in this journey we call ME/CFS.

    I hope that your journey won’t be 20+ years, but if it is, my only recommendation is to take it and make the best you can. I have a gut feeling you are already doing that.

    Great and needed post Rachael! Thank you.

    • 12 rachelcreative January 27, 2011 at 9:13 am

      Dominique thank you. I think that code of living the best you can with what you’ve got is very important to me too and has made my life happy and in many ways fulfilled for most of the time. There’s always more I would like to be doing – but even with peak of health people will always have more they wish they could do.

      I don’t always feel 100% positive about things, as this blog post shows. But when I look at my life now rationally I think I do pretty well and I’m thankful for the blessings I have like the people who help to make my life rich.

      I do fear spending the next 10 years waiting for the wellness to return and it not coming. But equally I think it’s important to me to have hope that I will get better. Perhaps the key is not to be so down on myself if I don’t. I don’t know what the answer is really.

      But you’re right that it’s a journey and I know I’ve come a long way in these 4 years and my blog charts that. I have to remember that the coming years of my life are a journey too, an adventure even if that turns out to be an adventure mainly played out on the sofa and in bed! Thanks again. It really does help to know I’m not alone.

  7. 13 Jo January 27, 2011 at 11:07 am

    I think I’ve always had it and with ageing and stress I got to the point where (as Dominique would say) the elastic didn’t snap back any more.

    I love what you say about feeling like you are sitting on the sofa with the world going by. I feel exactly the same. And I think you mirror the anxieties many of us are feeling about our reduced incomes and the threat of having even that taken away.

    You are not a failure. You are a brilliant, creative and articulate woman. It can’t take that away from you.

  8. 15 cusp January 27, 2011 at 12:39 pm

    Just a quick comment to say that your piece spurred me on to write about my own long term experience of ill health and there have been some interesting comments

    http://lombredemonombre.blogspot.com/2011/01/veteran.html


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