Sunday, 19 December 2010

The Future?

I've avoided updating the blog for the past while for a couple of reasons. One is that I haven't been having the best run of 'wellness' and I've been choosing to use my very limited energy on other things. Another reason is that I do not want to keep repeating myself with each post being a recycled version of a previous one.

This isn't always easy to achieve as so much of what I experience, think or feel now that I have a chronic illness is cyclical in nature. Here's a 'typical' week as an example of what I mean:

Monday - I'm going to change the world.

Tuesday - I can hardly change my underpants.

Wednesday - I have so much to be thankful for.

Thursday - This existence is shit.

Friday - I'm not as ill as I think. I need to give myself a push.

Saturday - I can't even make it to the bathroom.

Sunday - Another week has passed and I have achieved the square root of zero.

Hopefully that helps to paint a picture. Life is now a constantly cycling set of emotions that range from positive and thankful to what's the telephone number for Dignitas (that might not make any sense to non-European readers but Google is your friend). And so, although whatever I'm feeling/experiencing on any given day is real and worth acknowledging, I also am aware it is exceptionally transient.

Which brings me on to the main theme of this post and another area that is shifting constantly in my mind. The future.

Almost every area of my life is now up for re-negotiation. There are many ways in which the future might look for me, depending on my health. I could be relatively symptom-free next year, I could be worse (perish the thought) or I could be relatively unchanged. The main areas of anyone's life, in my view are: relationships, career, social life, sense of purpose. All of those areas are impacted by my health. There's a lot of tough thinking ahead of me.

One thing I am becoming more resigned to is that the change in career direction I had mapped out (to become a Social Worker) is unlikely to be appropriate now, regardless of whether I improve or not. Social work, especially in the UK, is a career that is often dominated by high levels of stress, low levels of support from the public/Government and crazily unrealistic targets and workloads. I was always aware of this and it didn't phase me. Now though, I know that my health will likely be unable to handle such stressors and I'd be back to being very ill within a couple of years of recovering.

Another consideration is that I am now fully engaged with M.E. - both in terms of how it is impacting me personally and the stories I hear from fellow sufferers. To be honest, I never gave M.E. a second thought until it hit me. I knew it had controversy attached to it and I even knew a woman who apparently had it. But, like so many of us whilst we are healthy, I shrugged my shoulders, said 'what a shame' and carried on with my life. So, now that I have this new perspective, I'm going to find it very difficult to treat any future recovery as an opportunity to turn my attention/skills/efforts to anything other than somehow supporting those who are in the middle of suffering, despair and hopelessness.

I'm arrogant enough to know that I have a good brain (perhaps less so than before I got M.E. as it has eaten away at some of the sharpness!) and that, whatever I do with my life in the future, I can have an impact. It would seem absurd for me to direct myself anywhere other than M.E. in the future. That has implications in terms of my career options, my earning potential and where I live/work. Everything changes and I may look back on this post in years to come and laugh at my naivety but, for now, I can't envisage using any future recovery to do any other type of work.

The other main factors I mentioned? Who knows? All I can know at the minute is that I am not the same person I was before I got ill and I will probably not possess my old values, concerns or priorities when I come out the other side of this.

Here's to the future my friends :)


  1. Thank you for expressing this so well. Despite all your many losses, you haven't lost your heart. Here's to a future full of heart.

  2. Hi Barry, I haven't seen your blog before but I was very moved by what you wrote. I can relate to the typical week. I don't know how long you've been ill but things do change. The nature of our illness is so variable. I don't know how but we do cope and, despite the inevitable neurological damage, we do learn. Like you, I wonder what I will do if I ever get the chance to recover (antiretrovirals being the only route to vaguely good health, I reckon). I fancy being an astronaut but might have to settle for fighting a fight for those who are unable to do so themselves. This illness changes, challenges and educates us in so many ways. On a good day I can kind of be grateful... the next booking a flight to Switzerland... such is our life. Take care, sarah

  3. That's such a beautiful thing to say, Meg. Thank you so much. Take care x

  4. Here is to the future my friend! Try not to stress too much about it, one day at a time, it's tough to let go of thinking of future career considerations, I went round the houses thinking (& trying) different careers, full & part time but each time I just ended up more ill & set myself back months. It is a worry when you are used 2 working & earning. Let it go, accept & rest, keep ur hopes & dreams of course but don't put too much pressure on yourself. Reassess in months to come. Your career as a professional blogger is helping others so much, u r changing the world in creating awareness. Xxx

  5. wow - was just a few hrs ago reading an article (which i will post a bit of later somewhere else) that echoes so much of what you said...probably a bit hippie for you in some ways - but same message. bit spooky really...

    yep, here's to a future full of heart (that's beautiful meg).

  6. Hi Sarah - thanks so much for reading and commenting. I've only been seriously ill since around April so everything is happening very quickly for me. Here's to a wonder-drug that allows us to be astronauts AND fight for fellow ME sufferers :)

  7. Hey Barry, another great post! Let me just assure you, although it appears you're aware of it - you are not missing anything by not being a social worker. The institutions destroy any of those people who actually really care - you cannot actually do your job anymore - you're too busy doing stats and recording to be of any use to a human being...I am sure you will find a way to fulfill your desires to help others and I look forward to following your journey.

  8. Barry take it from one that knows our life still changes the same as everyone else, I am not the same person as I was 24 years ago when this disease hit me. But I do still have the same values even more than I did have, as age makes you see things differently. As you said you have a good brain...if you take things easy and rest when you need to you will keep least now we have hope that that wonder drug is just round the corner....we will be astonauts we will be all things and we won't need to look after any sufferers cos we are all going to be better. J

  9. VW - Thanks, as always :) Not sure about the professional blogger part though, haha.

    KP - I look forward to reading it, though I'm not gonna be a hippie ;) Yes, wasn't Meg's phraseology just beautiful?

    Rebecca - Thanks for confirming what I felt was true. When I started my degree I was full of intention to make a difference. I guess I had the idealism that most new trainee social workers have. I did quickly realise though that the system was there to stifle individualism and creativity. I think I'd have ended up wanting to work in Africa or something...somewhere not yet constrained by health and safety and ticking boxes on forms.

    J - Thanks for commenting :) I'm sure we'd all raise a glass to your vision of the future!

  10. Well said, Barry. Your writing oozes insight - things you have already discovered and things that feel on the verge of discovery. Thanks for sharing your experience. I've been dealing with this thing for 16 years now - and have had many insights as well. Similar emotional roller coaster - one day lying in bed wondering what is my purpose if I can only lie here looking out the window - the next, grateful that I HAVE a window. The next day - noticing the tree out the window. On days when pain is prominent - despair - and then the thought that if Christopher Reeve had felt pain all over his body, he would view that day as a triumph. Perspective changes and on and on it goes. I will say, that though it is a difficult road, this life changing encounter has taught me more about myself and Life than almost anything else I have experienced. Writing is a good outlet - I have written an essay I could share with you if you'd like - but it's too long for this comment section... don't want to intrude - I just know that, for me, it always helps to hear or read others' experiences. I am an eternal optimist - so I believe anything is possible. Don't give up, my friend. Thanks again for your wise words.

  11. Hi Barry,

    I am really touched and inspired by your commitment.
    After 17 years of caring for my wife who has very severe ME I'd just like to say that we both still dream of changing the world. But those days, weeks, months, years pass by ; each day really is very tiny. Each day is a matter of getting through , trying to find a way to cope with layer upon layer of pain, numbness, paralysis, cognitive issues and so on.

    Yet like I said our dreams are very much alive. It's a harrowing road yet it has much to teach . You learn a lot about what is real. You really do learn about your own self ; that it is infinitely greater than ME . You certainly learn who your friends are. You learn who you are and how important it is to stand by that.

    ME is entering into a personal and political struggle; a raging war on all fronts. Changing the world means getting the psychiatrists and the medical insurance lobby of our backs, it means standing up and fighting hard for a proper biomedical service for yourself, it means taking on the Health Authority, your GP, MP, local media, Social Services.

    We have found the greatest service is not to fight on the abstract but actively change things for one individual. Never, never compromising on thet truth, that ME is a neurological disease requiring specialist tests, treatments and consultant input. ME has nothing to do with CBT, GET or the network of official ME clinics here in the UK.

    ME is one of the greatest fights that has ever been waged, against all the odds ,for survival , for recognition, for basic human rights.

    I pray we are getting close to a breakthrough. I sincerely hope that with your passion you will be able to pursue a Social Work career. Meantime this experience will serve you well.

  12. Only just caught up with you here. I think the first year or two of the illness are the toughest really is like having a rug pulled from under you. Every thing, every aspect that you thought you 'knew' is challenged.

    I went through every emotion when I got so ill I couldn't work anymore. I was so sad, so angry, so frustrated. My crash happened just as my career was really taking off and I was so excited and revved up for the challenges ahead.

    What I honestly think is that you are doing fine as you are. You don't have to save the world or become the hero, the rescuer. You don't have to right the wrongs, my can just be you and the rest will follow. You can't see it now because it takes a lot of letting go to let things just flow and develop but you will.

    Put your energy into just being and learning from your experiences. Its very hard to do and I know that for all sorts of reasons you have a need, an impetus to make things better but you dont have to try so hard. You just need to be you (*) Its enough (oh and btw P. can be very sage when needs be so listen to him too)

  13. Hi Barry, so sorry to hear of yet another sufferer of this horrible illness, I have been struggling now for 20 plus years, pretty much live my life in bed and my only human contact is on the computer if I dont want to crash for visiting someone for a hour a week. Three years ago my daughter began showing signs of this and now is completely bedridden also at the age of 25. Well I hope you start feeling better and enjoyed your blog very much, keep writing and I will keep reading. I use to pray for a cure for this, but at this point I would be happy for a day out of bed once a week. My prayers are with you.

  14. Hi Barry, it looks like it is the time of the year to overlook the past and take a sneak preview in the future. I wish you all the wisdom you need to make the right decisions and use your limited energy in a way that serves you right.

    10 years ill and bedridden since September.

  15. I'm completely overwhelmed by the depth and humanity of everyone's responses and the fact that a blog entry by little ole me encouraged them. Each deserves an individual reply so I'm getting to them gradually, promise :)

  16. Nadine,

    Thank you for your comment. Although my 'typical week' scenario was a little tongue in cheek, it was also a serious attempt at demonstrating what you have just described wonderfully. I would be honoured to read your essay if you are happy to share.... you can reach me at: fotheringham AT live dot co dot uk (hopefully that makes sense - my attempt at fooling spam bots, haha).

  17. Greg,

    Thank you so much for sharing your insight. I am trying to become as wise as I can, as quickly as I can, in terms of dealing with having a chronic illness but I am conscious that I am unlikely to ever have the perspective of a carer. I'm sure the journey is as difficult and painful and frustrating for you as it is for your wife and I'm sure she feels blessed to have you by her side.

    What you said about the difference we can make... that is something that has coloured how I have tried to make a difference in the community. I understand the political and medical injustices we face but I choose to focus on my immediate environment and what I can change. This has led me to set up a community forum for those who wish to learn to pace using a heart rate monitor. It has also led to my blog becoming more about my deeper thoughts and feelings in the hope that it resonates with others and allows them to recognise there are others out there toiling with the same fears and frustrations.

  18. My dear Cusp :)

    You are very wise. Yes, there exists in me a need to rescue. It runs deep.

    I do need to temper it but I believe it can be used in positive ways too. Obviously I must avoid becoming consumed by whether I feel I'm succeeding in helping others but, at the same time, a life without a greater purpose is a very grey one for me. I have to be out there making things happen in my own ways.

    Not to embarrass you my dear but look at you. Although I haven't known you very long, I already see the good you do within the community by reaching out and making some of us feel more supported and less alone :)

  19. Anonymous (sorry, wish I knew your name!) - thank you sincerely for reading and commenting. I am so sorry your daughter has also succumbed to this horrible illness. We certainly do lower our expectations when we get ill and that, perhaps, is no bad thing. Sending you and your daughter warm wishes for the future.

  20. Esther,

    You are right. The perfect time for reflection and adjusting our future goals :) I'm glad to realise it does not have to be a completely sad process. I'm finding a lot of joy alongside all the changes I'm going through.

    Take care.

  21. Barry're a good, sensitive, empathetic soul. Thats a rare gift in itself and (though some may shoot me down) even rarer amongst men for they often dont have the insight of emotional maturity. For the moment that's more than enough. Your body needs rest and your mind needs to chug along slowly 'watching the day'. It will all unfold as it should. It all takes as long as it takes and requires great patience. Your way will come to you

  22. Thank you for this wonderful post and enlightening discussion! I've been at it longer than you have but my week is much as you describe. Personally, I'm grateful for that and can ride those waves pretty well because I trust the change that always comes.

    Follow your heart. You have a very, very good heart!

  23. Way to go Barry - loved your weekly summary. I have tweeted this post :)