Good News Everyone – CFS/ME Has Ruined My Life

This week’s latest symptom is terrible gastric cramps/pain which I’ve been experiencing in the evening and at night.  It’s been a while since I had a bad run of IBS cramps which is particularly annoying as my diet is pretty good at the moment. 

That’s not really what I wanted to talk about though. It’s just that yet another round of symptoms and pain made me think something startling.

Whilst I was huddled in bed last night hoping to squash the pain away I thought something that has never entered my head before … CFS has ruined my life

CFS/ME has trashed my life – totally.  It has robbed me of pretty much everything including hopes, plans and aspirations for the future.  I think of my mum’s quivering lip as she has (on several occasions) been close to breaking down at the thought of all the things I may never get to do (including having a family of my own).   She can only bite her lip, look away and ask in a quiet voice to change the subject.  And I see the pain and it’s like a manifestation of the pain I feel, the grief I feel for the things I may never have.  This illness ravaged my life and that of my family.

What’s really shocking though is that, odd as it may sound, I don’t remember having heard that thought in my head before – CFS has ruined my life.  This was the first time it had occurred to me even after two and half years of being ill.

I’ve felt immense frustration.  I’ve felt anger, despair, longing, grief and utter sadness.  I’ve asked why me, why now, how did this happen, when did it start, when will it end,  how will I cope, what if I never get better, what if I get worse, did I do something to deserve this?  I’ve said it’s not fair, I don’t want this, it’s not real, I am weak.  But I’ve never felt that this illness has ruined my life.

It’s certainly squashed parts of my life.  I’ve lost my job and am now unable to work.  There’s a list as long as my arm of things I can’t do, shouldn’t do, dare not plan for.  But I think I have managed to maintain a focus on what I can do, rather than what I can’t.  It hasn’t ruined my life because – well – I have a good life which makes me very happy.

The list of can’t-do is so large and overwhelming it really doesn’t help me to dwell on it.  What’s the point?  Far better to live the best life I can while I can.  Some days it’s easier to set aside the can’t-do list than others but a far larger proportion of my life is spent on the can rather than the can’t.  It’s a lot easier for me than for some as with the support of my husband he enables me to use a large amount of my energy on things I enjoy rather than having to fight to just do survival tasks.  I am very fortunate in that regard.

As soon as the thought “CFS has runied my life” flashed across my brain I realised that way madness lies.  To allow such a thought into my heart and carry it with me would be toxic and sure to drag my spirits down into a deep depression.  It would be too too easy to wrap this thought around me but it would suffocate me and really would ruin everything I have fought so hard for.

All of which makes me reflect and realise that I do a pretty good job of being positive.  Positivity isn’t a trait I tend to associate with myself – it’s not something that has, I thought, ever come naturally.  I’m the first to moan when I’m tired, hungry, unhappy or ill.  I hear myself and think of Eeyore.

But it seems I’m able to be a lot more positive than I ever realised.  Faced with the brutal reality of how incredibly hard it is to be largely housebound due a fatiguing, disabling, debilitating chronic illness I seem to keep my head above the murky waters (most of the time).

I think I also have a deep belief and hope that it won’t be like this forever and that one day I will get better.  I’m not sure if I will get back to my old level of healthy but I have a hope that I will and that I will be even healthier.  I am realistic about the prognosis but hopeful.  I am, it seems, just like the help guides I read last year said I should strive to be like.  Which for me is a huge relief and a cause for celebration. 

I have worried that I am too negative, that I haven’t learnt to accept my illness and my limitations, that I don’t push enough or that I push too much, that somehow fundamentally I am Getting It All Wrong.  When in fact I am doing a pretty good job.  I’m not a super human and my illness isn’t consistent or predictable – so there’s going to be a lot of ups/downs and swings/roundabouts and constantly shifting ground.  And that is ok too.

There is also a lot to be said for the embracing of a simple life with simple pleasures – a necessity deemed by chronic disabling illness but one which has many benefits to offer. 

Not everyone can stomach that silver lining talk.  How can something so devasting be a good thing?  Well of course it’s not what I would wish for – I’d like to be bursting with energy and making the most of a full, active life with few limitations.  What I am saying is that even with a life stripped to a bare minimum you can still find happiness.

For me thinking that CFS/ME has ruined my life has been a really uplifting experience.


16 Responses to “Good News Everyone – CFS/ME Has Ruined My Life”

  1. 1 JoWynn April 1, 2008 at 12:25 pm

    Yea, Rachel! Hooray! What a wonderful realization. I, too, suffer with IBS.

  2. 2 Growler April 1, 2008 at 4:59 pm

    It has ruined part of your life – but some of that old life you didn’t really want anyway, such as a soul-destroying job.
    It has also enriched your life. I have no doubt you would have become the artist and photographer you are today, but I’m also as certain as I can be that it would have taken you a lot longer to reach this point if you had been healthy. You’ve been able to focus more of yout time, talent and energy (what little you have) on your creative side and if you’d been healthier you and we would have found lots of other things to do instead.
    What’s most exciting is that the rest of us can see that in terms of your creative talent and your work you are getting better each day, the more you learn and the more you try the more impressive the results.
    That isn’t a silver lining – it is far too big and impressive to be just a mere lining.

  3. 3 Connie April 2, 2008 at 4:28 am

    Umm what your hubby said…LOL.

    Seriously, you’ve written what I think of and pray about and dream of. You’ve put words to what many people with chronic illnesses think and feel and you’ve done it in a way that is so thoughtful that I want to hug you.

    Being in that mind-numbing, depressive, negative mood for about 2 years and that finally feeling the positive side of things has made my life so much better in so many ways. I often think of being chronically ill as surviving a death sentence – you believe your life is over and then when it’s not, you experience it all in a new way, each moment.

    No I’m not pollyanna and happy all the time. I still get frustrated, but when I’m done having my hissy fits, I get back to real life and am so thankful for all I have.

  4. 4 Rachel M April 4, 2008 at 2:38 am

    Well said, Rachel.
    Not many healthy people can get it, but I feel keeping the delicate balance between hope and reality is a kind of art.
    The realisation I have at the moment is that I’m ready to drop “Accountant (Retired)” from my email signature template. Finally, I am okay with just plain Rachel and I still proud of myself even not many people would see the reason why.
    Although having said that, I have lots of crying, moaning, self pittying and other ugly moments. I feel they are equally important as positive moments as I am truthful to my life.

  5. 5 ama April 4, 2008 at 1:02 pm

    sometimes it does me a lot of good to tell myself quite plainly that CFS HAS RUINED MY LIFE. like you, i consider myself fortunate — i too have a loving and wonderful life-partner. and like you, i am someone who spends quite a lot of time enjoying life and being quite happy about it. there are many things i *can* do, probably more things than most healthy people can do (the majority of people in the world are way poorer, more disadvantaged, and in direr straights than i am).

    at the same time, it is, i find, quite all right to remind myself, on occasion, that CFS HAS RUINED MY LIFE.

    what life? you may ask. what other life is there than the life i am living? is it even reasonable to compare a real life with an imagined one?

    maybe not. but it is comforting, sometimes, to remind myself that I AM NOT A LOSER. that there are GOOD REASONS why, like you, i don’t have a career or a family; why i have so little time to spend on things i like and enjoy and believe in (and lots of time to spend in bed or on the couch); why i don’t remember what it feels like to walk in the mountains or sit in a cafè in a foreign city or visit a museum. why i never see my family. why i can’t write a paper — i simply cannot keep information and thoughts in my mind long enough. why why why.


    now, having ascertained that, let’s resume to joyful task of living our splendid, exciting, and deeply rewards lives!

    good luck with the IBS pain. i hope it leaves you alone soon soon soon.

  6. 6 Alicia April 4, 2008 at 1:19 pm

    You’re doing great! Ditto what Growler said exactly, and he would know. My illness has taken away a lot of my life too, but it has changed me for the better in many ways. It is nice to read your reflections on this.

  7. 7 Nina April 4, 2008 at 4:49 pm

    I can only agree w what everyone else has already said. And I must commend you for your “quick trip” thru the ruined-my-life stage. I took 2 years:-)

    Everyone who is busy, busy, busy has not time to enrich their inner life, and we do. No, it’s not a measure of success by outside standards, but outside doesn’t matter much any more.

    Growler, RAchel is lucky to have you as her partner!!! 🙂

  8. 8 Barbara K. April 5, 2008 at 6:35 pm

    Again, you articulate so poignantly what many of us who deal with chronic conditions experience. Thank you.

    I have found that letting the emotional pendulum swing all the way into the darkness also allows me to let it swing deeply into the light.

  9. 9 Jon April 6, 2008 at 8:19 pm

    A lovely article Rachel, which echoed some of my own thoughts and feelings. You’re right about the dangers of letting yourself slip into a negative world-view. I often think about the things I can’t do any more, but I just sort of shrug my shoulders and think “Oh well.”

  10. 10 greatdaneservicedog April 20, 2008 at 5:06 pm

    Oh the self doubt that can take hold of us!! Believe me, I waited and worried and prayed for over a year before I decided to buy another Great Dane puppy. I’ve decided to train him to be my service dog, and shorten that stinky list of “can’t do’s”. It’s hard, but just doing something to overcome is a giant victory. All the frustration and extra fatigue of this pup will pay off after a couple of years. Strangely enough, I think it already has emotionally…good for you, refusing to give in and give up.

  11. 11 Samantha May 3, 2008 at 9:20 pm

    It does ruin you life..
    I do hope you have a loving family to support you, it makes so much difference.

    Thinking of you, big hugs hun


  12. 12 Susan November 25, 2008 at 1:54 pm

    oh how wonderful, someone else in the same boat! I have had such an array of symptoms over the many years of ME it’s always good to know that others are out there who also have this constant stream of strange and new symptoms. I absolutely agree this illness has ruined my life but what choice do you have but to carry on and get the most it is possible out of life. I just had a funny thought: wdn’t it be nice if we cd discover the cause and invent an injection we cd then give to murderers and the like so that their lives cd be as miserable as this? Far more effective punishment if you ask me. I just try to get thru each day NOT thinking how much I can’t do but trying my best to achieve at least one thing, that’s the best I can hope for.

  13. 13 Name Withheld June 24, 2010 at 1:55 am

    I wish I could find a way to be so positive. After 11 years with ME/CFS I’m suffering a MAJOR relapse. I’m back to resting in bed each and everyday for the last year.

    In the past two years I’ve lost my Brother, my Father, my dog, cared for elderly Mother, faced financial ruin and suffered constant relapses.

    If I’m honest I feel like I’m about to throw my hand in. If it weren’t for the fact I’d hurt my wife and Mother by doing so, I’d have done it by now.

    • 14 rachelcreative June 28, 2010 at 11:14 am

      Hello Name Withheld

      I’m so sorry to hear you’re in a relapse and you’ve endured so much loss. I can’t imagine what it’s been like for you.

      Having cared for your elderly mother, had such trouble financially and having lost so many dear to you – well that’s a lot of extra burded to face when you’re already having a ME/CFS relapse. It’s pretty understandable that you feel that way you do.

      I’m glad you left your comment and felt able to express just how bad you’re feeling. God knows it’s tough enough without the emotional journey you’ve had these last two years.

      All I can say is that it’s ok to feel the way you do – after all you have good reason. And to say that it wasn’t always this way for you, so to know that this too will pass. You won’t get back what you’ve lost but there is still a life to be led however restricted or small that may feel. And that you’ve been healthier and stronger with ME before and that can, that will come again.

      I always remember this in the dark times – that feelings of suicide or wanting to not exist are typically a sign that we want things to be different in our lives, not that we really don’t want to be here anymore. I know this doesn’t present a solution as to *how* life can be different, but knowing that what I really want is for something to change kind of makes ending things seem like a pretty extreme solution to that.

      I hope this doesn’t come across as condescending when I say – hang in there. It’s not always going to be like this and you’re not always going to feel the way you do right now. If you can find the smallest hints of postive things, of things that make you feel good, hang on to those. Tiny sparks can be nutured.

  14. 15 Michael H March 11, 2011 at 5:28 am

    I’m struggling with Cfs as well… its really making me upset.. I had been feeling bad for a long time now.. about a year ago I went to the doctor and they Told me I had mono. This made me mad because I felt like there had to be something else wrong.. well mono lasted 7 months because I was going through a very hard “boot camp” for my job.. its basically really hard training. Long hours and stressful. Also in another state so hotel life really hindered my healing process. I still feel sleepy(more like I just woke up all day) but my bloodwork comes back and they tell me I’m in the best conditions and best shape.. I go to the gym still, but have to take energy drink to have a good workout.. I know that’s bad but when I’m in the gym its the only time of the day I feel good.. once I’m done I want to pass out but I should be studying for tests. So I try but fail and then fail the tests.. I have always been a bad at school and studying.. but its work work now and I can’t afford to fail like this.. I know I have to do it but I have no motivation.. I feel like I’m letting everyone down. My parents think its just stress or allergies.(really I can tell they think I’m lazy) I don’t know what to do anymore. Its not a largely recognized condition so I feel like I’m at a dead end(and like I just woke up). Im just depressed because I think I will loose my job. Don’t know what to do. Help docs!!

    • 16 rachelcreative March 11, 2011 at 12:02 pm

      Doesn’t sound like you have much good advice or support so far Michael. I know some people stick with a diagnosis of Chronic EBV (Chronic Epstein-Barr Virus) EBV being another name for glandular fever.

      Others believe that the EBV is just part of something bigger like M.E. (ME/CFS). I was diagnosed with glandular fever & had the whole gland thing going on but I had been ill, run down, not right for a good 6-9 months prior to that. So I think the glandular fever was either secondary or got re-activated by the triggering of ME/CFS.

      I only mention it because perhaps finding a doctor who’ll consider an ME diagnosis might be helpful. It won’t necessarily lead to a cure treatment but might help a lot with approaches to managing symptoms and strategies to avoid becoming more debilitated.

      The kind of pushing you describe in both work, fitness and home is what lead to me having a major collapse from which I am still not recovered 4 years on. All because my doctors said I was recovering from Glandular Fever and to stick with it when actually my diagnosis should have been Chronic Fatigue Syndrome / M.E.

      I wish you well. I hope it is just a bad case of EBV and you will recover fully soon.

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Push It 11 Sep 2011

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