There is nothing that focuses the mind more on the realities of being disabled than filling in forms about it. I completed the worst of these on Tuesday — a hideous 59 page epic. There are whole sections in which which one must list the activities one used to do, and can no longer. Writing about these was rather grueling. However well one feels one is doing, whatever small improvements one sees, ticking the box that states that you need help getting in and out of the shower is singularly depressing. I blame that form for the insomnia from which I have been suffering since. As I usually sleep like The Log, and require a couple of daily naps to keep me ticking along, the effects of this have been pretty devastating. Unfortunately, there have been no days this week that I could say were “good” (in the sense that the energy I possess is equivalent to the tasks at hand).

As you know, I am determined to get well and be mobile. This is different from “being positive” or “thinking positively”, because there appears to be no element of choice about it. In this context, determination seems to me to be a sort of basic – even desperate – will to life. I often found myself musing on this in the early, rather terrifying, days following the stroke when I couldn’t move at all. The way I felt then was philosophically similar to a character out of Beckett who “can’t go on” but “will go on.” Since then, the struggle to recover – and it is a struggle – seems to me to to be a sort of process of vacillation between those two points: between how much one ‘can’t’ go on and how much one ‘will.’ I’ve found that the only way to deal with recovery’s pendulum-swinging effect is, again, like a Beckett character – with resignation and with humour. And I mostly find myself on the ‘will’ side of the equation. But the bureaucracy of disability is, by necessity, focused entirely on the ‘can’t’. And tiredness not only heightens ones sense of incapabilty, but also – as one lies awake for the third night watching the inane antics of Mapp and Lucia – makes one weirdly self-absorbed and fearful. (At least, that’s what it does to me). Next week I am going to see the cardiologist to finalise plans to close up the hole in my heart. I am really looking forward to getting this sorted (at the moment I often feel like a sort of time bomb in which another stroke might occur) but obviously at some level I am worried about it too, because it has been preoccupying me during these stupid, sleepless nights. Overall, then, it has been a thoroughly rotten week, and the sole focus of this weekend is getting my sleep patterns back to ‘normal’. Tom will help me stay awake all day, and I shall knock myself out at night with a couple of jellies. I am hoping that two days of this will restore my Beckett-ian balance. Anyway despite being totally exhausted, many things are cheering, including these peonies that turned up from my colleagues at work. They are just coming out of the closed-fist stage, and I am really enjoying them.

Today I intend to get out in the fresh air with Tom and to sleep very well tonight.

* the title of this post comes from the closing moments of Waiting for Godot, but has a double resonance with Arthur Askey that my sister (who it was nice to see this week ) will appreciate.

58 thoughts on “that’s what you think*

  1. Hi Kate,
    Hope your week so far has been filled with long, lovely, restful nights and very “good” days.
    The peonies (and your photos of them) are beautiful!
    sx

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  2. Hi Kate – I picked you up something interesting on my recent travels and would like to send it to you. I used to have your address as we once exchanged tea and yarn for patterns, but I fear I’ve lost it. Would you send me an address to use to get this (fun) “something” to you?

    As for sleep – it’s such a willful lover! Try ignoring sleep for a night and it will come rushing back into your arms.

    best,
    Sophia

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    1. That’s not always the greatest idea, sometimes you absolutely *need* to rest, I’ve had to learn this the long slow hard way. Not trying to be mean or anything, sorry, but I kept on pushing and pushing and pushing and made myself loads and loads sicker in the process.

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  3. I cannot add anything except good wishes. Your writing is amazing and absorbing, and thank you for sharing your experiences. I hope the sleeping sorts itself out.

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  4. The “can’t go on”, “will go on” makes me think of Churchill’s “If you are going through hell, keep going”. The determination to keep on manifested in living creatures.

    A day of fresh air is always welcome and renewing. I hope you have a good time!

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  5. I mentioned before that my brother-in-law recently had a mini-stroke caused by PFO. We’ve been nervously waiting for the determination by the surgeon as to whether the PFO was large enough to warrant surgery or if it would be managed by a daily dose of baby aspirin. They decided to go with the baby aspirin option which is good, but there’s a part of me that finds the certainty of repair by surgery appealing. I too have that ticking time-bomb sense about it despite the assurance of the heart specialist that the likelihood of reoccurance is small in his case and that he can resume his life, including a daily run and soccer, as normal. Hang in there Kate. By the way, the peonies are gorgeous. I’m waiting for mine to bloom in probable a week.

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  6. I’m hoping by now you’ve managed (with the help of Tom and fresh scots air) to get your sleep sorted.
    My sister and three of her kids have had surgery for holes in the heart. When my sister was operated on back in the 70’s they opened up all round the back of the shoulder blade, but her kids, a few years back had key-hole surgery. It’s much, much less invasive now and recovery is so much easier and quicker. One of my nephews had three very large holes. He was very nervous about the surgery, but my mum (his grandma) told him he’d have special Power Ranger powers after. It made such a difference to his ability to run around and be active, that I think he still believes now that he is part-Power Ranger.
    I’m sure it will be a big relief to get this part of your recovery sorted, so I hope you get a date with a ‘heart knitter’ soon.
    Hope the sunshine helps make this a better week for you.

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  7. My husband had a similar experience this week, when he was assessed for “Attendance Allowance”. The very kind lady who came to help him fill in the form was keen for him to apply for a Disabled Parking Permit. He was stunned. He has never considered himself to be “Disabled” by his illness. She, on the other hand, was watching him use furniture to get around the room / steady himself, and found it hard to believe he didn’t feel the need for the famous orange sticker. To FL, it would be a label saying he had given up. As soon as she had left, he drove himself to the pub for a swift half!

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  8. With all your intelligence and pragmatism, I’m sure you made a very good, clear and succinct job of filling in those forms. It doesn’t make them any less frustrating and tedious though, so reward yourself by doing something else you are good at, that you actually enjoy! (sounds as if that’s just what you were planning – hope the weekend went well)

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  9. I was thinking about peonies too, today, having passed some on a beautiful walk in downtown Anapolis, Maryland. They are among my most favorite flowers. As I read your post today I started projecting to a year from now and how happy you would be, all this struggle and difficulty behind you. A year seems like a long time but if you focus on the job at hand every day, it will eventually arrive. Until then we are all thinking OF you and learning FROM you — and probably many of us wish we could fill out those darn forms FOR you — talk about adding insult to injury! At least it’s done now, right?

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  10. May you sleep and rest well!

    PS: I always have found Mapp and Lucia to be knitting design fodder – the costumes are amazing! (Lucia’s, that is.) It’s fun to know of someone else who watches Mapp and Lucia!

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  11. Kate, you prevail as one of the best essayists around on life after a stroke. I envy you your wit and insight, but not the price you paid to bring us a better understanding.

    Sweet dreams and restful days going forward.

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  12. Dear Kate, why shouldn’t you be self absorbed and a little fearful ? I know it is an unpleasant (euphemism) situation, but a necessary one considering what you have on your mind and what you are going through. What amazes me is that in your post you somehow managed to balance that feeling with the beautiful peony pictures, and with your writing, which makes it very clear to your readers that you are staying on top of things even though it is a mighty struggle and you may feel on the verge of collapse at some times. I do hope you find a way of keeping those worries at bay so you can enjoy that necessary activity, sleep, and I wish I could help you a little more actively than by dropping a few lines on your blog, but since I can’t travel to Edinburgh, I am sending all the strength and serenity I can your way.

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  13. You’ve hit it (again): a balance, a routine, of any kind, is so comforting, and getting thrown out of that balance is rotten. Hang in there!
    Sending positive thoughts in your direction…

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  14. ..My SIL just told me St John’s Wort works for some.She’s a trained dementia carer and has seen amazing improvements in her present friend.(She never calls them patients)

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  15. ah, yes, i remember the awful disability forms!! i think that part of what makes it so depressing is that on some days, you’re capable of doing some of the things, so you don’t really ever have to think about *all* the things you can’t do all at the same time…. until, that is, you have to list them all down on one of those blasted forms. sigh.
    as for the sleep issues, i hear you. taking melatonin really helps me – it’s not readily available in the UK, but you can buy it over the counter in canada, so my mum keeps me in good supply! :) i’d be happy to send you some to try out if you’d like – just let me know.

    xo lilith

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  16. You have my deep sympathy over the forms.

    I am struggling with gearing myself up to fill in DLA forms for my son (they’ve been sitting on my desk for 2 months now). As a parent, I spend every day looking for the positives, encouraging him about new achievements, helping him to move forward, not dwelling on the hard stuff. The forms ask you to do the opposite – detail all the worst, most difficult, problematic things. How are you supposed to stay focused on improvement and the good things if you’re sitting mulling over the bad in order to make a good case for getting support and help?

    I can imagine that it’s even harder to do that for yourself.

    Take care, and I hope you get some sleep.

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  17. Sorry you’ve had a shitty week. The forms are interesting in that they have a really big impact that I think the maker of the forms probably have no idea about. They are geared up for physical issues so deaf people for instance often find them entirely invalidating and undermining. I wonder if they shape your view of yourself. People who are born disabled are compared with ‘normal’ people through these forms in a way that is so invalidating. The new you is being compared in this process with an old you. And it doesn’t sound like it’s good. I wonder if there’s a way to do it better.
    Sleep tight xxx

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  18. Jellies – traditional Scots dialect for temazepam, a well-known alternative or chaser for whisky. I am amazed Mapp and Lucia didn’t do for you, are you sure it wasn’t a waking nightmare?! Good luck, hope you are feeling more rested now.

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  19. I thought of you when I was at the Henry Moore exhibition and saw his fabulous drawings of people sleeping in the underground. I wonder what helped them to sleep? I’m sure there’ll be more light at the end of your tunnel after a good, long sleep and your day in the fresh air will have helped.

    Wishing you sweet, peony-filled dreams.

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  20. these peonies are gorgeous! they’re one of my favorite flowers. the beckett analogy is interesting, and i’m glad that you can keep such a clear perspective on all this. sending good thoughts.

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  21. “jellies” being some witty briticism for speedballs, i’m sure.
    srsly, melatonin, a naturally occuring sleep chemical, is very helpful to the insomniacs in my family.
    as for the debilitating 59 page inventory, it is my experience that no progress can be made on accepting the unacceptable until an accurate survey of the damage has been apprehended.
    i’m so hideously sorry it had to be done. but things will get better now, i promise.

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  22. You have my deepest, deepest sympathy about the forms. Do get all the help you can for them – don’t try to do it all by yourself. Try the CAB, your local legal advice centre, stroke charities and associations, friends, etc. don’t be afraid to ask for help, there is quite a bit of help out there, it’s just a bit hard to access sometimes.

    I’ve never read any Beckett, but the “can’t go on” “will go on” resonates so deeply

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  23. Sorry to hear of your insomnia – it sure is a pain in the butt! I experienced insomnia for several months after having a small begnine brain tumour removed. I tried many things including sipping chamoille tea and watching the mindless Shopping Channel. It eventually passed. I now wonder if it is related to healing in some mysterious way. Wishing you sweet dreams.

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  24. I admire your progress thus far. I am glad Tom is so good to you, that must be such a help. I wish I lived down the street and could stop by and encourage you to embroider the feelings, stitch the emotions, and laugh it away.

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  25. ‘weirdly self-absorbed and fearful’ – this is exactly how I feel since being diagnosed with MS 6 years ago. I’m reasonably healthy now (despite a few relapses that left me immobile, unable to eat, talk, or remember how to count to 10 – somewhat stroke-like I imagine) but I still lay awake at night worrying when the next bomb will drop. I am sending you some good healing energy (from the opposite coast of the Atlantic – Boston) and hoping that you vacillate more towards the ‘will’ end of the Beckett spectrum. :)

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  26. I hope it works and you get your much-needed sleep!

    Peonies are my favourite flowers and always make me feel better- we used to visit the beds at Kew every couple of weeks during peony season, when we lived close enough.

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  27. Love the peonies!

    Love that every time I read a post from you I learn so much…didn’t know about the Beckett character “can’t go on ” but “will go on”…didn’t know about Arthur Askey….I hope that by sharing your troubles with us, they have indeed been halved….all good wishes from sunny Brisbane which is a bit nippy this morning.

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  28. o dear, I remember filling my DLA form out and hadn’t realised just what I had been putting up with, for so long! But, the blue badge and automatic car are such a godsend that it’s (almost) worth it … Sounds like you’ve had some good advice here about the insomnia. Good luck with it and I hope you enjoyed the lovely sunshine today – it was glorious here in Perthshire today, even with the snow capped mountains up the glen!

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  29. I wish you restored balance and a nice weekend. Maybe start some knitting that will engross your mind.
    Everyone is right, a book about your experiences would be a great gift to the world. Take care, Kate.
    V

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  30. Being sleep deprived skews your thought patterns and can be really depressing – all you want to do is sleep!! That, compounded with those horrible forms is enough to drive anyone nuts. However, you are a strong lady – look back and see how far you have come and how quickly you have recovered. You WILL get there, Kate. Little steps……..

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  31. When I had trouble sleeping last year (because of very painful spasms in my jaw) I bought a hypnotherapy cd. I listened to it when I went to bed (using headphones so as not to disturb my husband) and found it very helpful. Eventually I didn’t use the cd, I could go through the relaxation routine without it (I still do it in my head when enduring dentist/doctor appointments!)

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  32. I think that this is the wonder of being human – when something unbearable happens, we go on.
    I admire you, Kate, for your perseverance and know that you will harvest good health and much happiness from your efforts.

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  33. Yes, Magi’s idea is a good one – especially as writing is something you can do, and do exceptionally well. It would be like turning lemons into lemonade…so to
    speak. I know this is terribly frustrating to go through, but seems in the process that you’re learning alot. And teaching alot, too.
    All the best, Louise

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  34. Wow Kate, you write so well and each time you post something you connect with so many. It’s just an idea but – how about reaching a wider audience? There are many of us who had no understanding of such an injury and who are gaining some as we read your blog. What about a book or a series in a newspaper or TV? Tell me to shut up if I am out of line. Take care x

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  35. You are our favorite ticking timebomb but I know it must be an uncomfortable feeling (to say the least). Insomnia is a killer and I hope it will get better next week. Backward and forward, backward and forward….

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  36. Kate

    I wish to re-iterate all the good wishes and thoughts that flow your direction.

    I am an avid follower of your blog and look forward to your posts….keep them coming.

    For some time I have wanted to thank you for your eloquent insight you are giving us into your thoughts and feelings and everyday battle following your stroke.

    I am a nurse and in the past have accepted that the impact of stroke is devastating both physically and mentally. I would like to have thought that I was sympathetic and understanding but you have given us so much more useful insight and knowledge than I could ever have known. I have been moved to tears by your valiant struggle. No one deserves this burden but you so fight it and rail against it showing such strength of character that you and your loved ones should be proud of.

    You are inspirational and we are all rooting for you. I have no doubt that you will do well and look forward to your blog when you will describe to us so well your lovely outings to the hills – and until then, the stories of your beautiful creative knitting and observations of life.

    I am sorry to add that being ‘bone tired’, sleeping poorly and low mood are all expected outcomes. Sorry if that doesn’t sound helpful but I am hopeful of reassuring you when I say that.

    I wish you all the best in the next step of your recovery and wish to remind you that you are one in a million! Keep going girl!

    Morag

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  37. Sorry to hear you had a bad week, dear one, I hope next week is better. There will be times like this, and as you’ve clearly realised they just have to be survived. I hope you can do some nice nourishing things to sustain yourself.

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  38. Dear Kate,

    I wish with all my heart and thoughts that this stage passes quickly.

    You’ve done so much in so little time, that you will be soon enough opening to a better and more wonderful phase, just like those beautiful flowers.

    FibreJoy from Toronto

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  39. Filling in DLA forms is very depressing. You have to itemize all the bleak details of the negative aspects of disability, which makes it grueling. It’s all about what cannot be done. So necessary though, to get the benefit to which you are entitled. Disability is also very expensive, often in ways that most people can’t imagine.
    I hope your plans to improve your sleep patterns work. Have a wonderful weekend, burying your nose in your beautiful peonies.

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  40. what beautiful peonies! i am sure that this will pass and you’ll enjoy some good rest again soon. getting out into the fresh air sounds like a good distraction!

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  41. I feel for you, despite not having been through anything remotely similar. You seem to have an incredible strength of mind and will which I imagine will serve you well. Good luck with the sleeping.

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  42. A fellow insomnia sufferer here..with multiple causes according to Gp who has no lasting solution! I have a couple of collections of music tracks..which usually help me drift into peaceful sleep…earphone leads threaded through pjs so I don’t get strangled! My husband swears by an old OU course tape which bores him to sleep.If I am awake I have decided not to fret about ..and I frequently knit in the night (Neepheid on needles this week- love it!)

    Hope you are enjoying lovely bright day with Tom. At last,the cherry blossom is opening here in my part of Scotland. In Edinburgh last night and it is so much greener..an old farm worker told us many years ago that Biggar will show all it’s greens on 22nd May, so we always follow his advice and go up Bizzieberry Hill to survey fabulous 360 panorama. It’s never failed in 30 years..looking forward to our Friday evening walk with a bottle of our Elderberry to salute the greens!
    Wishing you peaceful dreams

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    1. ..From a conversation last night with my SIL who is a trained dementia carer..during a discussion at a course recently one carer said that her patient’s sleep had improved greatly since taking St John’s Wort.Tried with SIL’s caree – didn’t seem to help at first but after 3 days the improvement was remarkable. Still has some poor nights but much better.

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  43. there are so many stages to healing and getting better. I hope this stage passes quickly for you because there is nothing worse than lying awake waiting for sleep to come. hoping the sandman brings you sweet dreams this weekend.

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