Friday, 6 May 2011

A Year of Illness

*warning - extreme honesty in this post, including exploration of suicide etc - do not read if easily offended/upset by the subject*

I've put off writing this post for so long.

Last month saw me reach the depressing milestone of being ill for 1 year. Now, before I go on, I should state that I know people who have been ill for 30+ years and I know people who have been ill since childhood and have never been able to take part in life much at all. In no way do I compare my situation to theirs. I'm new to all this in relative terms and I luckily still have pretty good cognitive functions and have memories of good times to keep me company in the endless days of nothingness.

However, I cannot ignore the fact that 1 year of illness feels very different to 11 months. Even if the reality is not much different. I guess it's kinda like the psychology of how an item is priced at 9,99 rather than 10.00. I always thought this would be temporary. Sure, I knew there was a possibility that I'd be sick for a long time but I don't think I really had that mindset. I was going to do everything I could to get better and then get back on with my degree and my future. I was going to go back to having holidays and spending time with my precious nephew and all the stuff I thought were just temporarily on hold. Now, a year later, it all feels like a distant life led by someone who isn't even me.

And it hurts. It hurts so fucking much. On days where I'm clear-headed and aware, I have philosophical debates with myself about suicide. Nobody knows what the future holds (which is just as well, really!) and I might be well again one day soon. I might be relatively functional again in the near future even if I don't recover. Or, I might be like this forever. So, I choose to retain control over this part of my life. The part about when and how my life ends. It's a controversial subject and I respect that but this is MY life and it will be MY choice.

I have explored two options. One being the Dignitas route and one being the 'do it yourself' helium method as used in the early days of Dr Kevorkian's work. Talking about this subject openly is impossible without having to soothe or reassure others who care about you, of course. So, I should clarify a few things. This is calm, rational and pragmatic and is based upon the possibility of me reaching my limit AT SOME POINT in the future. This isn't something I'm planning for next week. Also, this isn't something I'd even consider when I'm at my lowest. People can believe me or not but this isn't depression talking. I promise all those who might worry about me discussing this that I will not be doing anything drastic or rushed. If it reaches the point where enough is enough, it will be planned and everything will be put in order. But I retain my right to decide.

To any of my non-ill friends who still read what I write, I'm keen to know why you no longer have anything to say to me. Did I stop being fun when I got ill? Do you not believe i'm really ill? Are you bored of me talking about illness? Is it easier to avoid the whole subject and just ignore it/me? I doubt I'll get a response to this but I'm curious. Because I feel like I don't fucking exist anymore.

And so, what was originally going to be a reflective piece about the year of illness and all my learnings has turned into a rather different beast. I make no apologies for allowing my uncensored anger and despair to have a voice today but I appreciate anyone who has the love, curiosity or fortitude to 'listen'.


  1. Barry,

    Raw and real. It is what it is and you told it like it feels. I appreciated you sharing your pain, disappointment, sobering realizations and your anger.

  2. Hey kiddo

    I'm sorry you're going through this. But just know, we all have, and do. That is not to diminish your experience, but so that you know that you are not alone.

    Thanks for being brave, as hard as this is to discuss you need to know it's normal to have considered it. People underestimate the all-encompassing nature of this illness and it's detrimental effects to every moment of our lives.

    I would say to you though, that it seems you have spend the last year making plans, researching treatment and understanding CFS/M.E. The next step is to relinquish some control to it, accept the fluidity and intangible state of the illness and try and be okay with whatever comes every day.

    You need to emotionally process it, instead of trying to 'do' and 'plan'. I am much like you, give me a problem and I'll solve it (bit of Vanilla Ice is always a good sign), but unfortunately that is not how this works and that is why it is so infuriating.

    It's not like cancer or HIV - there are no statistics or parameters or treatment options with success rates. So you got to just understand and treat what you can and rely on your CFS friends when the other shit happens.

    Love you. Here whenever you need to discuss the other shit. xoxo

  3. This has touched a huge nerve for me.

    You could have written these words from my own heart yet even I haven't had the courage to blog about this.

    This illness can eat people alive by ripping everything from underneath them and issues such as this are more important to us because we still want to retain some form of control over this very unpredictable condition.

    Thankyou truly for raising this issue. Plz feel free to email me anytime. details on my blog

    VV xx

  4. Great post, reminds me of one i wrote a couple of months ago. I think it's valid and important to sort out in your own mind how you'd go about it when and if the time comes. I also have 2 preferred options ready, although like you I am not at 'that' place yet. RE: the old friends ignoring you ... I totally understand how you feel. A few days ago I sent emails to ALL my old friends about my Art 4 XMRV project. It was a really nice, considerate, well thought out letter and I haven't had one single response. Some of these people I have known since I was 5. It's very upsetting but it is what it is and we can't change it .... at least we have have been lucky enough to find each other here online (I know that in no way makes up for those who have abandoned us in the real world). Wish I had something really positive to say but I guess being neutral is better than being negative!! xoxo

  5. Know that you have been heard and understood by others who have been and are still "there." I won't tell you what you need to do or how you should feel - this illness presents us with a strange life and we each have to figure it out individually. Without sounding cliche' or trite, I'd like to say that I am glad to know you even in this limited forum - maybe that counts for something, I don't know. My best days are the ones I live moment to moment, but it took a long time to realize that, and I often forget it in frustration of wanting my impulsive, spontaeous, long-term planned and busy life back. I have to believe there is some value to my soul experiencing this, but that's just me. I drew tremendous strength from the story of Christopher Reeve's decision to remain on the planet when his wife told him, in spite of his broken body, "You're STILL YOU." Thanks for the honest blog, friend.

  6. i salute your honesty, braveheart! it is painful to think that your life is so difficult that this becomes an option, although i think it brings us all to our knees at one time or another.
    i know you haven't much belief in the phasing bit, but i can tell you from where i sit, the first phase is THE most difficult.
    to add to what marzi says, the extremely difficult part is learning to take it day by day - let go of control but not let go of that which you can control.
    holding you close to my heart. xx

  7. You are brave to speak about this aspect. Marzi is absolutely right in what she says....

    TBH when I first 'met' you I knew that you'd go through this but there's no way you can prepare someone or tell them. By the time I got so ill I could no longer work at all...never go back...I had been through other phases that lasted weeks, months, then a year where somehow I had managed to drag myself back to some sort of functioning and back to 'normal life ' ( even if on the inside it was hell maintaining that). It was a real shock, 10 years ago, to find I couldnt do that....that this time it didnt work.

    In the end I believe that what you're going through (what we all go through when we get ill with this bastard) is grief. You know all about those stages....and how you weave in and out of them, back and forth.

    No real comfort to give (though I wish I could)...just understanding and being here if you need me x

  8. And 20.00 will feel very different to 9.99 and also to 59.99. You will quite likely have some better periods, I did for several years after the initial phase. It ebbs and flows this illness but you will find a new you who no longer refers much to the old you but is still just as real and that does get easier, at least. The anniversaries never go unnoticed but they will get less acutely painful with some more acceptance. No. 1 is hard. I remember it well.
    I completely understand the need to think about suicide options. It is reassuring to think that you can have control over that when there is little else in our lives that we feel we have control over, it does not mean you necessarily want to end it right now, as you say. I don't have any plans myself, but I understand why people do.
    As for the friends, it really hurts. There is nothing else to say there, except thank goodness for the internet and making new ones... I do wish I could keep more non-ill friends as it is strange to live in a bubble only talking to other ill people, but again, not a lot of choice there! Lucky we are a varied bunch.

  9. Dear B, I always admire and respect your courage and honesty. I completely understand where you're at right now. Looking into assisted suicide options to have plans ready if ever needed ... is actually more healthy route than just wanting and/or trying to end it all in a fit of depression and despair. Lise is right about the first years of this illness being the hardest. We feel out of control and do whatever we can to gain some semblance of control. We feel angry, we feel despairing. But being 7 years in, I have to say that things really do get better!! I know it's hard to believe right now from where you are. But you get to accept this way of life after awhile, and you find that you've changed and grown for the better. You find good things that have come about because of the illness. And when it comes to hope, I haven't given up hope of getting better. I started a new antiviral about a month ago, and last week I had more good hours in my days than I've had for 7 years. I truly believe I will get better. I believe that for all of us. Love to you, Mo

  10. P.S. The old friend thing -- that just plain sucks. None of my old friends stuck around either. I think it's heartless and cowardly of them.

  11. Thank you all so much for your comments.

    I especially thank you all for understanding the value in acknowledging these feelings and in 'sitting with' the reality of the situation. I was worried people would panic and/or rush to try to make me feel 'better' and, really, that would have been of no help to me at all.

    I guess I needed to be heard. I needed to be able to be honest about the philosophical aspects of life with chronic illness and the possibility that this might not be a temporary situation.

    I also thank you for not confusing these very rational thoughts with depression or self-pity. I have been in places where it was the depression and/or self-pity talking and I know this isn't such a place.

    A fairly constant theme seems to be the acceptance one. I recognise the wisdom in acceptance and I recognise how grief and how letting go of the 'old me' ties in with that. I agree those are stages I still have to spend more time working through. I absolutely agree with that.

    The thing that worries me is that I listen to others who are chronically ill and I hear them say "oh, if only I was well, I would do X, Y and Z" and I'm not sure what X, Y or Z is for me. I could be miraculously cured tomorrow and I might still feel this apathy about the future. Perhaps this goes deeper than what the illness has taken away. Perhaps I must learn to live, generally, in addition to living with chronic illness.

    I also thank you all for being so non-judgemental about the topic of suicide. Some of you may be against it for religious reasons and some may be against it for other reasons but I thank you for engaging with the subject and for allowing me to feel comfortable expressing myself.

    Most of all, I thank you all for being a part of my 'new' life. For standing alongside me and for simply 'hearing' me. The truth of the matter is, being heard and having people share in your realities is worth the world and it's fair to say that my strength to carry on would be much diminished if I didn't feel there were others walking the same path.

    Much love to you all xx

  12. B, I think it is a testament to how well you expressed yourself here that we 'hear you' and are not panicked!

    Also want to point out that when I was first ill I was in total survival mode. I was fighting everyday to 'get my life back!!! I didn't even put a thought to my X, Y or Z if I were well. What would be the point?

    For me it took the 'acceptance' piece as well as some semblance of normality to allow me to begin to dream again. oh, and less horrid symptoms (huge)!

    Really great blog! xx

  13. Hi Barry - As you well know I have been really struggling lately. I haven't actually thought of suicide but I have wondered how the heck I'm going to 'continue' to do this.

    And then I read this book that actually gave me hope. Dr. Byron Hyde (who I remember from when I first got sick) has written a book called, Missed Diagnoses, and even though it made me mad in placed (not because of him) it gave me hope that we can get to a better place and those newly diagnosed like you have a better chance of recovery.

    Of course, that means seeing him and being properly diagnosed, thus, properly treated. Anyway, I thought you might like to read it.

    BTW, I think you subject matter today is very important. I think anyone with this illness who has not had a 'suicide' thought is not telling the truth. This is a major, life threatening, life stealing illness.

    I applaud you for your honesty and bravado. But then that is why I like your blog in the first place! (wink)

  14. The first year after I couldn't work any more I did loads of things to make myself better. I went for a week's holiday on my own on Dartmoor. I applied for a job in a retreat centre (bless). Finally I went to live in a community for the terminally marginalised. I laugh when I think about it now, seven years on. I thought a little time out was all I needed. Acceptance is, indeed the key, but like Truth, is a bit of a pathless land. There's no signposts or well trodden road to acceptance. Renee helped me with this once when she said acceptance doesn't mean resignation.

    There's so much wisdom in this post and all the comments. Thanks for the opportunity to reflect.

  15. Having read the comments and your response there's not a lot I can add. But I will say that acceptance is not the same as giving up. That for me was a very important lesson and one I still grapple with from time to time. It's also something that not every healthy person in my life always understands and the way I have to think to cope can sound defeatist to them. If I assume I'm not getting better next week and embrace the limitations some people can want me to be actively aiming to be better. Truth is that happens so slowly for most, if at all, that willing it to happen is less emotionally healthy for me that accepting where I am and re-adjusting every few months.

    Acceptance whilst maintaining hope of recovery - that's my motto.