I have just spent a good chunk of my money building a computer. It’s a gaming machine, so that I can play online games. It’s got a big screen, so I can use it to watch films and series. It’s a desktop machine, so I can put the screen up on a plinth and hold the keyboard without needing to sit up or carry the weight of a whole laptop.

It’s palliative care, for someone who can’t do ninety percent of the things they used to do.

When healthy, I don’t watch television. I barely even read. Computer games are something that I traditionally despise as a massive waste of time. Books are things for filling in long train journeys and relaxing on holiday. What I do when I’m healthy is create – Whether it be writing or sculpting or sewing or sketching designs for little machines or crocheting or trying to devise an origami leopard. If I’m not creating, I’m outdoors; Swimming, walking for dozens of miles a day, sneaking into abandoned buildings to photograph their innards, going to the gym or the pub and meeting new people and trying new things.

I can’t read, right now, and that’s bothering me. I tried to read the Aubreyad last year, and made it halfway through Post Captain before giving up because it was all too complicated. I’m struggling to read The Subtle Knife, which is a children’s book that I’ve read before.

I haven’t made anything at all since a waistcoat last March, and that was a simple project that should have taken half a day. About a year before that, I’d been making an item of clothing a week, and was getting markedly better at it. My sculpting has stalled, or possibly even gone backwards. I look at things I built in Japan, and can’t imagine having a quarter of that sense of movement and technical precision now.

I haven’t taken any photos since I went out photographing pigeons last spring, and I think that was the last time I left the house purely to do something fun as well. There is an official piece of paper saying that I can’t walk a hundred yards at a stretch, and it’s not even a lie. I can’t even remember why I used to enjoy talking to people, since there’s nothing to talk about anymore.

Swimming has turned into an addiction – I don’t often enjoy doing it, but I suffer if I miss it. I missed the 21.00-22.00 swim tonight, and I feel sick and guilty.

I’ve made exactly £120 at work this year. I used to make at least £300 a week before even breaking a sweat. On the social front, I no longer have the physical or mental stamina to help my friends when they need someone, and thus I feel that I have no right to be with them in the few good times.

I’ve built a little nest, with a screen full of passive entertainment, and cushions so I don’t even have to hold up my head, and a pile of cans of lemonade and a stack of packs of biscuits, so I don’t even have to go downstairs to eat. I’ve got a little cell where I can be kept in comfortable, mindless stasis.

I fucking hate this. I feel like I’ve given up, that EDS has won and I’m just trying to find ways to pass the time until I die. I literally wake up in the mornings and think “Oh, it’s half past eleven, so it’s only six hours until my partner comes home and makes me something to eat. Yeah, I can wait that long,” and then after having eaten it’s “Two episodes of this, and then I can go to sleep. Maybe have a spot of morphine so that I don’t keep waking up in the night.” and then rinse and repeat.

I don’t quite see the point. If you were told “You will be in pain for the rest of your life, and you will lose everything that you value about yourself” what would you do?


14 thoughts on “Palliation

  1. I wish I had an answer…


    Google sketchup or some similar free autocadalike. Make 3d thing using computer.
    then you can print the fuckers.
    explore the shapes and possibilities.
    and the learnstrations.

  2. I have problems with my concentration and attention span (and particularly medium term memory)…so probably going to be a long shot for me to look into the archives (or remember what I have read for more than 2 seconds)…but we’ll see how it goes.

    Still chewing over this contribution. Have some very ill friends, so food for thought in your situation vis theirs (and mine to some degree). Need to cogitate. Take good care as my lovely CPN Patricia used to say (in a charming Irish accent).

  3. I’ve got lots of random thoughts. Maybe that’s OK.

    * I think anger, grief and hopelessness are very natural reactions to chronic disabling illness. Mindfulness helped me to accept the disability I have, and the fact that it mostly cannot be changed. I don’t meditate any more, but the mindful thinking habits are really ingrained now (in a good way).

    * My two best friends who have been most ill fell ill early in life. They never had their moment in the sun. I count myself lucky I did have that. One of my friends had a degenerative condition and died aged 30. So I count myself lucky to be alive, even if it is not as full a life as some of my contemporaries. I’m not for a minute saying you should be grateful for what you’ve got – your account of mindless stasis is heart-breaking.

    * I find it very challenging to be alongside someone very ill and unable to make it better. My surviving friend is bed-bound 24/7. She only leaves her bed to go to hospital in an ambulance. She is sensitive to sound, light and touch. So my fall-backs of hours in bed cosy with radio 4 and audio-books are not available to her. Nor can she ever feel the sun on her face or the wind in her hair. I do what I can to make things better, but it is very little. When she’s particularly bad, she is too sick to speak or email, so I am completely cut off from her (though I have now formed a friendship with her mother).

    * Finding ways to improve quality of life in an age-appropriate way for you is difficult. I cannot read fiction any more, and skim factual stuff just for work purposes (I can also manage the Guardian!). So audio-books have been a life-line. I never read the Dark Materials trilogy to which you refer, but the BBC radio dramatisation was out of this world and helped me feel lying in bed listening to it was a good way to spend my time.

    That’s enough random thoughts for now. Thanks for your thoughtful and honest (as always) blog post.

    • Thank you – A sensitive and thought-provoking comment, as ever 🙂

      I think it was you who said that I had to let myself grieve a bit, once. And that’s probably dead right. I probably also need to let myself enjoy being passive – It’s not ideal, but being angry about it won’t give me wings, it just means I won’t enjoy the things I am doing.

      And yep, I definitely need to re-learn how to listen to audiobooks. I started Game Of Thrones, Master and Commander, and a couple of other things, all very good.

      Thank you, again, your thoughts are much welcome.

      • Mostly I fall asleep while listening to audio-books, so I re-listen to them multiple times, day and night. This seems to add to the enjoyment. There have been many highlights – Stephen Fry reading all the Harry Potter books (obviously!) all my BBC Lord of the Rings/Hobbit versions (both dramatised and word-for-word), and anything read by Derek Jacobi or Alan Bennett!

        My ‘breakthrough’ with acceptance came with reading an outstanding book called ‘Living Well with Pain and Illness’. It’s by a woman who suffered a catastrophic spinal injury early in life, and would have to live with constant pain and disability thereafter. I still have my very angry moments, but she really helped. I started another excellent book called ‘How to be Sick’ but my concentration lapsed so I am only one third of the way through that one. If you’d like my copy of the former book, let me know. I doubt I will read it again, it’s now ingrained in me!

        Anger is corrosive, but only too understandable. I had my moment with my bipolar diagnosis, and committed it to paper. I then sent it to all my friends and family and got angry with them if they responded in the ‘wrong’ way!

        A dark night of the soul moment

        When you want to quit, to give up, to stop fighting, to wave the white flag
        When being brave gives way to rampant cowardice, and the wish to simply turn your face to the wall
        When you wish you could work again in a ‘normal’ job one day but realise you probably never will
        When you think longingly of ‘normal’ holidays that other people have and realise you’ll probably never have one
        When your medication fails to do what it is ‘supposed’ to do, but makes you borderline obese anyway
        When the God you once believed in no longer seems credible, but an empty charade
        When you realise that the care you’d like to offer your elderly parents cannot be delivered by you
        When your husband constantly has to take time off work at no notice to look after you
        When you cannot plan anything ahead of time because you have no idea whether you’ll be out of your mind
        When you are eaten up by envy of those who are not insane

        Then you’ve walked in my shoes.

  4. Oh…..noes.

    I am good now. But that poem was from the heart. I almost never write anything creative, but that one had been boiling up for a while. I think I sent it to Sane or somesuch charity, and it was put online as part of their poetry collection.

    There is no ‘fair’ in truth. Suffering is inevitable. Change and decay an intrinsic part of existence. We must just try to help each other along as best we can.

    That’s not defeatism btw. Just quiet realism. And ‘to be a little kinder’ a good enough ambition I find.

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