gorse-ness

The van appeared at just the right moment. A few of you guessed that I’d been going through a difficult patch. It is important that I continue to keep track of my recovery, so I’m going to try to make sense of this ‘patch’ in this post. A few weeks ago, I was signed off from physio. Perhaps I should have been pleased, but it merely left me with a number of unanswerable hanging questions- did it mean I was ‘cured’, ‘recovered’?’ had my physical improvements now come to an end? Was this wonky, uncomfortable body as good as it was going to get? For the past 14 months, I had treated physio and exercise as my ‘job’ – and I was now forced to think about what the future looked like without it. What was I going to do with the rest of my life? During my final physio meeting, we talked about the many limitations and problems I still deal with, and I asked about approaching Headway (the charity whose literature I mentioned in this post). The response to my suggestion rather shocked me: in effect, I was told that I was not disabled enough to approach that organisation. “Stick with Chest, Heart and Stroke or the Stroke Association,” I was told, “they know the score.” I kept schtum at the time, but this exchange has stayed with me, and has been the source of much anger. In no sense was it my intention to access much-needed services that are there for folk who certainly require them more than I. But I have suffered a serious brain injury, and I spend every day dealing with its after effects. Why shouldn’t I contact a charity which is there precisely to support people with such problems, and whose provision, unlike the other two organisations mentioned to me, seems specifically geared toward younger people?

Then a couple of things rather dented my physical self-confidence. In the first Buster Keaton style incident, I became stuck in an “automatic” door. I was unable to extricate myself chiefly because of my weak left arm, and had to ask a bemused bystander to assist me. In the other incident, I lost my balance and fell against a wall. It was a nasty fall, and has left me with a badly bruised hip, and a painful lower back. In fact, my back – never a problem before my stroke – is now the source of perennial pain and discomfort, largely, I imagine, because of the general weakness of my left side, and my over-dependence on my right. I have found myself becoming increasingly frustrated with my body, the weakness, the wonkiness, and particularly the unpredictable refusal of my left leg to do what I tell it. My left side does not feel like “me” at all, and I have found myself repeatedly wishing that I had my “old” body back or even, in some very dark moments, that I could just get rid of the unruly leg. (I am ashamed to confess that there have been times when I have felt that I would rather have no left leg at all rather than the one I now have).

All of these things have brought home to me that the many problems of having a stroke are chronic rather than acute. Perhaps some things will still improve, but I am likely to have to deal with my physical weaknesses, auditory problems, terrible fatigue, and annoying impairments in what neurologists call ‘information processing’, for some time to come. It might seem bizarre to say that the easiest part of stroke recovery is the acute phase, but I really think this is the case: I experienced total left-side paralysis, but this was followed by improvements that were dramatic and in some respects exhilarating. There was a terror in having basic functions destroyed by the stroke, but a wonder that accompanied their reacquisition. I found a particular joy in my renewed physical understanding of the use and design of tools, in my ability to teach myself to use them, in my discovery that my body was infinitely adaptable and resourceful. Fourteen months down the line, I feel that I have rather lost that wonder and that joy, and, finding myself the owner of a body that remains painful, uncomfortable, unpredictable, and woefully lacking in energy, am left only with an unhealthy sense of physical frustration.

I suppose all that I am saying is that dealing with the acute phase of stroke is one thing; addressing stroke as a chronic condition is quite another. To be truthful, one of the things that kept me going while I was in hospital was the thought that my condition was not going to be chronic, that, unlike the clearly depressed folk I saw around me who were dealing with long-term neurological problems, I was going to get better. By working hard at my recovery, I decided, I would, in effect, make myself well. I now feel that, though they might well have helped me in the short term, such assumptions were really rather shallow and self-deluding. I think I thought that through the force of will, and hard physical effort, I was somehow able to recover the ‘old’ me. What I didn’t acknowledge was that there was no ‘old’ me anymore. I might have had the volition to work at the physio, but I was ignoring the massive rupture that the stroke had caused in my life. I remember a doctor telling me, about two months in, that he felt the facts of my stroke had not ‘sunk in’. I was very annoyed by this at the time – of course I knew I’d had a stroke – but perhaps, in a sense, he was right. I certainly wasn’t addressing the fact that my life was going to look very different.

The “old” me barely thought about her body. It was just there, unacknowledged, doing its thing, enabling me to walk two hundred miles across the North of England, get up and down Scottish mountains, and generally be in the places I loved. But now my body is intrusive and annoying. Why is my leg not working today? What does that peculiar headache mean? My eyes won’t focus – here comes the fatigue. Do I really need to rest again? The unpredictable body (and brain) are very tiresome, and dealing with them also has the effect of privatising one’s perspectives, compounding the loneliness associated with any chronic condition, and, at times, making one unpleasantly selfish. To be frank, it is hard to think about the bigger picture or other people’s feelings when you feel like shite.

To be short, then, I was in a fug: a fug produced by the pressing awareness that the many problems of my body and brain are, to one degree or another, chronic, and the fact that, in the absence of regular physio or other support, I was just going to have to get on with it on my own. A few interconnected thoughts have helped me to get out of the fug. The first was reminding myself that I am not on my own at all.

There are many, many wonderful things about Tom, but one of the best is that he is full of fun. Indeed, it is very hard not to have fun with him and Bruce about.



Watching Tom and Bruce this weekend, I thought about the sheer joy and exuberance they both find in physical experience, particularly outdoors.


I said in my third paragraph that I felt that I had lost the joy and wonder of the physical. But why? My body, although annoyingly different to what it was before, is still infinitely adaptable and resourceful. Like all bodies, it is still, in fact, in a process of becoming. And my legs, though unreliable, are certainly capable of hauling me up and down a hill. In fact, if I stopped thinking about how wonky and uncomfortable I was for a moment, I appreciated the pleasing this-ness of being outdoors — the sun on my body on a warm day, the crazy coconut smell of the gorse — probably more intensely than I did before my stroke.

Perhaps this all sounds trite and Pollyana-ish. Indeed, I have been irritated myself on more than one occasion by medical professionals telling me that one of the most important things I could do was to enjoy the moment and the simple things etc. I suppose it makes a difference if you arrive at these conclusions yourself, rather than having someone inform you, in terms that seem rather patronising, that it is amazing you can make the bed at all, or telling you to chew a raisin, and appreciate the raisin-ness of the raisin (this actually happened). Perhaps the point is that these things lacked context for me: I was really not arsed about whether or not I could make the bed, and the raisin-ness of the raisin meant nothing to me at all. Gorse-ness, however, is something else entirely.

It has helped me to turn a corner, anyway. And how nice to look forward to a Summer in which, with the help of Tom, and Bruce, and our new van, I shall enjoy much more of it.

And while we are on the subject of bodies and physical endeavour, please spare a thought for Tom on Sunday, when he will be running the London Marathon. We Northern rubes are praying for a cool day, and a good run. We’ll see you when we return from Babylon.

126 responses

  1. I am sure, at the time, you would have liked to tell the Raisin-nit a dark place they might have placed a raisin during that conversation. However, I am glad you found your own moment and object of pleasure to help you move past the darkness. My hope for you is that the moments of light outnumber the dark.

  2. I am happy for you that you have worked through this trying time and come out the other side with a clearer perspective of your situation. The opportunity for the van to come into your life seems heaven sent, and just what the Dr. would have ordered to enable to you continue your recovery.

    Yeah for Tom in the Marathon!

  3. Thanks for sharing this process. So much has changed in a year, what will you be writing about in another year? You have such a wonderful family, that acrobatic Bruce is a joy to see. Enjoy London, will there be a textile stop??

  4. Dear Kate,

    Nobody can tell you the right way to come to terms with a life-changing event; you just have to work it out yourself. You don’t have to be upbeat about your situation all of the time, in fact getting angry about it probably does you some good. Gorse-ness should definitely be a word.

    I’ll watch out for Tom on Sunday. Tell him to say ‘hi’ to me as he storms past as I plod along at a much more genteel pace!

    Stay feisty and fight on. You are an inspiration.

    Love and best wishes,

    Susie
    x

  5. Dear Kate,

    another great text on how it feels like if you’ve suffered from stroke. I originally visited your site because of your knitting (which I admire!), but now I enjoy having a look at it every other day to see what’s going on with you.

    Though I’m healthy myself, I find your texts very helpful and inspiring when it comes to dealing with things you can’t control, or change. I guess you must be of great help to many people – especially to those dealing with serious illnesses.

    Apart from all this, your photographs and your great style of writing are always a source of pleasure. :)

    Best wishes,
    Alexandra

  6. Your posts are quite intriguing, especially the war within about the physical limitations and their realities. The elements of the spiritual sometimes are the only things which make sense, and the fact is, at times we have to consciously choose what we want to believe.

    The therapists with whom you have dealt have given you some solid advice, such as enjoying the raisin-ness of the raisin – or, to use an too-worn phrase, being in the moment. This is important because it is the only moment we have to live in, learning from the past, living the present and assessing it as we go careening into the future. The problem, though, is context: all the best advice in the world is lost if the recipient cannot relate. All to frequently, the giver fails to understand this, and work to make that connection.

    And as far contacting that one charity – go ahead and do it. They can say yes, they can say no – I expect you have figured that one out. Don’t let others set up your rules and limitations.

    Keep up the great posts!

  7. Hello Kate,
    I always enjoy your eloquent and heart-felt posts, and I can’t imagine the difficulties you encounter every day in your recovery I was wondering if you’d heard of Kate Allatt? A different sort of stroke to yours, she suffered from locked-in syndrome. She has set up a new website for all who suffer a stroke under the age of 60, as well as for those who have locked-in syndrome. You can contact her on kate@fightingstrokes.org. I heard her on the radio the other day, it was a beautiful piece.

  8. I empathize deeply with your having to come to terms with having an ‘imperfect’ body, even when young. I have scoliosis, and due to the severity of my case, it was decided for me (by doctors/my parents) that I had to have surgery, which I had when I was 12. I have suffered the after-effects of this surgery ever since, via the varying degrees of back & neck pain that I have nearly every day. I appreciate that I’ll never know what my body would have been like for the last nearly 20 years had I not had that surgery, and can recognize that maybe I’m better off than I would be had it not been done. I’ve adopted coping mechanisms to help lessen the pain, or to simply help me deal with it (a very important one being yoga), but I’ve recently begun to consider the possibility of having the metal hooks & rods removed from my back, and was a bit surprised despite my years of dealing with my back pain to find myself vaguely wishing that the surgery had simply never been done. Now, I realize that this wish does nothing to rectify the situation, but it was helpful for me to give myself space to come to terms with the thought and the realization that I needed to move past it. I think you’ve talked about going through a grieving process post-stroke at some point? Something akin to that. All this to say that I think what you’re going through is very normal and I encourage you to do whatever you think is necessary and certainly to approach whoever you think might help in your process of learning to adapt to the chronic problems you now have to deal with, post-stroke. It’s your body, and your experience, and you know best what you need. And, yes, appreciating the small things helps. :) All the best.

  9. “We don’t receive wisdom; we must discover it for ourselves after a journey that no one can take for us or spare us.” Marcel Proust

    I have not been going through an emotional journey, not a physical one, but I have had some of the same feelings. It is easy for someone to tell you to be in the moment but when you are desperately trying to keep your head above the waves that keep crashing over you it is difficult to pull yourself up and do it. Something I realized is this – not every day is going to be a great day. I try to be thankful for the small moments of joy and not be dragged under by the other moments of sadness. I love reading your posts and I am rooting for you on your journey! Cheer loud at the Marathon -

  10. My mom said similar things after her stroke. She said that before, when people said they were too tired to do something, she thought they really could have if they had put their minds to it. She was so tired. She had been used to doing whatever she wanted, whenever she wanted.
    I imagine you are still improving, but that the rate of improvement has slowed. And I am all for your seeking advice or assistance from anyone who might have it. For what it’s worth. ;) Hope today is a good one.

  11. One problem I have with the NHS is that tendency to want to discharge you and get you off the books. If you aren’t receiving active treatment that is making progress with your condition they sort of wipe their hands of you. When you have a chronic condition they just want to get you stable and then wave good bye with very little in the way of help with what happens next.

    I also have learned to ignore much of what a medical professional says in terms of where to find help. I have never found it where they have told me to look, or I’ve found the help I needed completely by myself. I think you are right to go to the head injury charity. I think you are right in looking to them for help with dealing with YOUR situation. You have come so far in a short period of time, I think it was always going to level off and plateau at some point. I think you just hit it. Just because the progress is much slower now, it doesn’t mean that there won’t be any more progress. Your leg may be wonky, but for heaven’s sake – you are up a hill!!!! Bet they told you that might never happen didn’t they? Look at you now. Just think where you will be in 5 years time. No one knows, not you, not the professionals because you and your stroke are unique. Just keep on trucking, but remember not to beat yourself up if you feel a bit blue every now and again. It’s only natural that you sometimes want to scream.

  12. Well Kate, I’ve written to you before, always via a comment on here, so you may recall that I have a chronic back condition which has caused untold pain, work hassles and various emotional disasters. I am only 32 now, and although it all started when I was 21 or so, I honestly cannot remember what it was like to start the day without pain or to be able to plan something as inconsequential as a trip to the cinema without having to ask myself whether I would be in too much agony to sit there.

    Like you, I went through the stage which I always refer to as the, ‘So Is This It?’ stage. I had the good fortune to be treated privately throughout all of the ordeal, but soon enough I felt like a parcel passed from shiny office (in Harley Street) to shiny office (in some BMI hospital), with the promise that they would make me better then and that I would then ‘manage the pain’ later. Again, like you, the progress was exhilarating to begin with, because I was in my twenties and of course I was going to make myself better, right, but when it became apparent that I was stalling because the acute phase had reached the chronic condition one, I left those meetings with leaded legs, quite frankly wondering where the fuck I was gonna go from there.

    If the patronising side of things was spared to me by the private arrangements (there seems to exist an unwritten assumption that if you go private you’re somewhat better educated and ‘in the know’ of the populace who has to use the NHS, hence you do not deserve the patronising sap about appreciating life and the sweet smell of the mascara wand), the reality was still one that left me neither here nor there. I was not ‘disabled enough’ to be granted certain arrangements (and I didn’t want them, as I was telling myself and everyone within earshot that I was not in need of them), yet, deep within me, I knew that I was, as I could barely string in 90 minutes of uninterrupted desk work without feeling that awful sickness blended with pain shooting all the way up from my spine into my brain.

    To this day, I do believe that there is no empathy out there for the sufferers of chronic conditions, whatever these may be. It’s even harder if we manage to disguise our ailments because others just assume that we are entirely body-able and that as such we can sit for 14 hours straight if necessary or can operate a revolving door as normal. I have also found that the retreat into our world is, in a sense, quite necessary in order to deal with how shite we’re feeling, as you rightly say. This has nothing to do with becoming misanthropic. I’ve always considered it a vital life-line that allowed me to recharge in private in order to emerge again as the person I’ve always been; one who is infinitely adaptable and who, in time, does not feel the need even to think about the old me and the new me any longer. I think you’re doing splendidly, I really do, but I also believe that 14 months are just too few (bloody hell, now it’s my turn to sound patronising, eh?!). I felt ‘me’ again many years after my physical issues started even though, as you say, I wasn’t the ‘before’ me. And if you strongly wish to contact that charity… go ahead and contact it anyway. Much love as always, X.

    • To this day, I do believe that there is no empathy out there for the sufferers of chronic conditions, whatever these may be

      You are so right there.And once you add chronic/acute pain to the mix, even less so. I keep wanting to say ‘ Would a doctor ask a diabetic to try waiting, to try to eke out their insulin does, just to prove they don’t really ‘need’ it’?

  13. Kate, Your writing it down continues to help me in care giving to very good close friends. The Dad had a stroke a year and 3 months ago. They contend with two young boys and a myriad of life’s lessons. He too has been sent off into sans physical therapy land… and the confusion and brick wall that that has set up.
    I send you my de-fuggy vibes and thank you again for sharing a glimpse of recovery from stroke. hugs.

  14. Oh, Kate.
    I hope the gorseness continues to uplift your spirits. I do believe things will still get improve, but bitterly slowly and still in the two steps foward, one step back frustrating fashion.
    Hang in there, chica!
    p.s. smooches to Bruce. good luck, Tom!

  15. Thank you for sharing this part of your journey. My body has been troublesome, recently, so your words are quite helpful! I want to remember that as things inevitably change in life, I can still retain my ability to adapt to them.

  16. Thank you for another beautiful post, but most of all for reminding me of the smell of gorse. We used to pick the blossom to make gorse wine at one time – just the perfume whilst doing that was intoxicating!

  17. Reading your posts I get a keen sense of loss that I imagine will accompany you for a long time and perhaps never disappear entirely. Dealing with this is hard, but it does sound like you have just turned a corner. :)

    By the way, you certainly have a way with words. I hope you are still working on your book.

  18. In Hebrew we call it SIMCHAS HAYIM – joy/happpiness of life. I think it’s a life’s work to keep this as a goal. Sitting here at my computer reading your posts it appears that you are full of Simchas Hayim. You are happy to have the new van, you feel accomplishments from your hiking, your knitting, Tom and Bruce. I am so awe-inspired by your Joie de Vive.

  19. Dear Dr Kate:
    Years ago I favorited one of your sweaters on Ravelry that I was thinking about making and I have followed your blog ever since because of the thoughtful, well-written posts. The shared interest in history and handiwork, and walking did not hurt either. When you had your stroke it was terrible to read the news, but gladdening to follow you on the journey back. Through my career at at an ortho hospital in the US, I am unfortunately familiar with the elusive target of mobility and the Cerberus of chronic pain and fatigue.
    Above all else, you must be the one to decide if Headway is or is not right for you. The physiotherapist has given you his/her advice on it, and gave you a heads-up that many of the people with whom they work have not made as much progress as you have. And even if you decide they are not the best match for what you need/want right now, you have the two other groups which might end up being a good fit.
    It is difficult to comment in this online forum, as I only feel like I know you from reading your posts for years. But for what it is worth please know that I wish you well. I encourage you to never stop advocating for yourself and what resources might be available for you. Just because you do not have the “worst” outcome on some neurologic/physiological psychometric functioning scale does not mean you will not get benefit from resources developed for people with more impairment on that scale. I truly feel that is for you to decide, and would advise any friends or patients similarly.
    Much love from NYC to you, Bruce, and I hope this weekend’s London marathon goes well for Tom!
    Erin

  20. Thank you for writing to us all.
    Just keep going the way you are striving, that is all you can do, and you have been going extremely well. You have just been having a massive learning curve, and have gained much wisdom.
    I know, I hear you say that you would rather have not had to cope and re-learn, and learn, and gain wisdom in this way.
    The pictures are lovely again, and you are grounding yourself, and appreciating all the beautiful things you have in your life.
    The medical, and medical rehab system is all about profit; it’s cold and hard and I know from my own experiences all about it. I guess the therapists and doctors etc just have to process us all and on it goes, each person improves at a different rate. Even the able bodied therapists and people we come in contact with during these difficult healing processes, really don’t knows when/or if they will have to deal with these very conditions in the future. We people injured from stroke, car accidents and the like, really never thought we would have to deal with this either.
    I am left injured from the car accident, and I hear clearly and deeply, what you are saying. Please just continue to love your leg and body, and be proud that you have endured, and endured with grace. Love, x
    PS; Good Luck to Tom in the London marathon.

  21. Thanks for your post. I’m lacking the words but I’m just so sorry for your frustration and the times when you’re understandably fed up with the whole thing. I know we can’t do much from the other side of the world, but I’m sending lots of prayers/good vibes your way (don’t know your thoughts on all that and I hope it doesn’t sound patronizing, but sincere).
    Best of luck to Tom in the marathon. He certainly looks at the peak of fitness. I’m quite envious of your van, by the way, and the beautiful scenery you see when you open those curtains.

  22. Thank you so much for your eloquent posts. I started reading your blog because you’re a knitter, but very much appreciate your viewpoint on your stroke. My sister-in-law had a stroke at 30, and has never expressed her overall plight very well. Through you I’m understanding what she goes through so much better. Thank you for that!

  23. Dear Kate, I’ve followed your blog for a while now and have always felt inspired by your courage and determination. I’m glad you’re coming through this dark patch and I’m rooting for your growth in your new body.
    I know too well the difficulties of chronic fatigue and brain fog/cognitive disfunction – and the frustration of NHS services that only go so far and no further. Draw your help and support from everywhere you can find it and don’t let anyone put limits on you.
    Camper vans are wonderful! We bought one last year and it’s made a great difference in my husband’s ability to continue sailing now he doesn’t have to pitch a tent.
    Wishing you always the scent of the gorse and the view from the top of the hill – and good luck to Tom!

  24. It seems both you & Tom are in a marathon! Its much more useful to think about how far you’ve come than how far you have to go…and how far you’ve come is absolutely astounding.

    (off to enjoy the raisin-ness of some raisins!)

  25. I have nothing to say that others haven’t already said. My caring thoughts to you, my best wishes to Tom in his run, and a cyber scratch behind the ears to Bruce….

  26. Where are the words I want when I need them? In the past year, I have seen you going from strength to strength – you are a stronger person even if your body sometimes lets you down. Your ability to get the words out, to articulate how you are feeling, is a very special talent which you should not underestimate. OK, maybe you can’t jump 6 feet in the air to grab a stick, or twirl around so your kilt flies up, but you are definitely a participant in physical experiences, not just an observer. I am not saying “give in to your limitations” but definitely enjoy what you have: the ability to appreciate gorse-ness for one! There are so many people immersed in the grey of fug, without the “excuse” of a brain injury.
    And don’t you listen to anyone who tries to tell you you aren’t “disabled enough” to seek help from a specialist organisation – what a load of b*l*o*ks!
    Knit that gorse!

  27. As always, you write with incredible clarity, charm and honesty. I can’t wait to see what you’ll be writing in another 14 months or so.

  28. Sometimes we all need a kick in the ass. But you kick your own ass often enough that if this is to work for anyone it will work for you. You are awe inspiring and of all the people in the world one of the few that relishes in life’s simpler pleasures. It takes work and you have worked hard. What I have found after three years of this shit is that you know yourself better than anyone and you find your own way (now that physio has discharged you- I had serious trouble with that one) so go ahead and call Headway, what do you have to lose? I will be excited to find out once you have talked to them if you think it is for you or not…it has to be your decision. Cheering you on in your marathon of life! Good luck to Tom in London. I am off to suck a raisin-yuck!

  29. Greetings from Chicago. Good luck to Tom!
    I only recently found your blog and wish you the best. Advocate for yourself; if you don’t ask, you won’t get. Don’t make someone else’s decision.

  30. An eloquent post. While I cannot possibly understand the frustration or fatigue you feel, I thank you for sharing your thoughts so openly. For those of us caring with/for people who have chronic issues your insight helps educate us on how to respond and interact.

    Others have said it, but I’ll just reiterate: Contact Headway. You have absolutely nothing to lose.

  31. Thanks for your blog. Ignore the NHS – you do what YOU know to be right for YOU. Just go smell the gorse! And good luck for the Marathon.

  32. It struck me when you said you didn’t have context for your past experiences. I think moment by moment, as we head into the future, we try to find context for what’s behind us. This search should not lead to feelings of disparagement about the future. Look what you’ve done so far! I know you do, but wanted to express my admiration. So many people cannot accomplish what you have (in writing, in textile design, in so many other things) on the best days of their lives.

  33. Dear Kate,
    Thank you for sharing your journey with us. It is such a privilege to be able to read about your progress, especially as a good friend of mine had a stroke last year. Reading about your experiences has helped me to understand partly what she has been going through as well as being inspired by you. So, thank you for your insights and for your continued determination. Wishing you all the best, and also thinking of Tom for Sunday’s run – here’s hoping for ideal conditions.
    Kate x

  34. I’ve been reading your blog for a while but never left a comment until now. I just want to thank you for all inspiration, not just from your knitting, but I am also dealing with (post-leukaemia) fatigue and a body that will never quite recover. I recognize so much in your writing, maybe more so than ever in this post, you describe the struggle with a chronic condition so well. Oh, and I have had the raisin experience too, I smiled when I read that, but I certainly didn’t smile at the time. ..

  35. Thank you for such a thoughtful post. A dear co-worker, now retired, had a stroke some years before I met him, resulting in paralysis on his left side. Most days seemed to go well enough, but I can remember some days where his frustration with his body was not just palpable, but audible. A few muttered (or not-so-muttered) curses usually helped him get past what was troubling him at that moment. What I most admire about him is his ability to persevere with his sense of humor intact. Indeed, I think he’s one of the funniest people I know, and I suspect that if I knew you in real life I’d think the same of you.

    Like others have said above, it sounds like you’ve turned a corner, and I hope you’ll have more good days than not.

  36. I introduced my sister in law to Ravelry today – looking through some patterns, she said – ‘oh look at those cute owls’ …… yes, it was your sweater!! Best of luck to Tom for Sunday – I could perhaps run for 100yards (on a good day!) so I have very great admiration for dedicated marathon runners (but shades of the tortoise and the hare, I can walk for miles!) If I had been told not to contact the charity, I would have been on the phone as soon as I was out the door!

  37. You write so well and engagingly.
    I hope you have many good times with Bruce and Tom. As a “late in life” dog companion I have come to realize that a life that makes a dog happy is likely to be a good life even for us bipeds.
    May you enjoy the slow and beautiful spring.

  38. You might have heard this already, but maybe it can help someone … I’m an OT, and though I don’t work in the sector at the moment I have worked with stroke patients in the past and I had the pleasant experience of learning from someone who had a very positive outlook on all this. The brain is a very strange thing. If we loose part of our brain – for whatever reason – the other part of the brain can take over the lost functions. The brain works by firing stuff (well, I know all the official words in Dutch but I seem to lack the words in English, sorry, but I’ve learned that it’s easier to understand this way anyway) and the older we get the slower the firing goes. This means that it takes the brain longer to take over this funtions when you get older. Note the “it takes longer”, not the “it will never happen”. One of the nicest examples is kids that loose half of their brain to control epilepsy (sorry if I spell things wrong), its amazing how well they get!

    Anyway, I’ve learned that one of the reasons adults often “don’t get any better” and have to hear they are as good as they will get, is because they loose the will to keep on trying and often PT write them off at one point as they are good enough in their opinion. You are never “good enough” till you are what you were before. It is not sure if you will ever reach that goal, but there is always progress even if it’s only slow. I can only tell you to keep on going and to try to look for a form of “therapy” that helps you. I’m now learning a 12-years old girl to ride a horse, she is paralyzed at the right side from birth. She never thought she would ride this well and even her parents are amazed at the progress she makes every time. When sitting on the horse you can hardly notice she’s having a problem at her right side!

    As for the public opinion, it’s hard. I cannot say I know what you are going through, but I know a bit. A few years ago (2 or so, and I’m turning 30 this year) I noticed I kept having issues with my balance. I used to do a lot of sports including gymnastics and I never had balance issues at all. I kept asking my doctor and he kept telling me it was blood pressure, while I kept saying it was more then a low blood pressure. After a while he finally referred me to a hospital and there they found out my balance system on 2 sides is hardly working at all. They could not find a reason so there is no treatment. Even friends who know me and who know my problem often laugh at me because “I’m drunk” because they forget as a look so normal. People often stare at me when I walk like a drunk on the street. It hurts like hell. I fall a lot, hit walls and in the dark I’m totally off.

    Please don’t give up, keep trying your best and keep looking for things that are good for you! Contact every person, organisation, … you think can help you. Thank you for writing this all down, I love to read it (and I love your designs!!)

    Greetings from Belgium

  39. Oh Kate, you are always so eloquent! I know exactly what you mean. Although my SAH didn’t leave me with physical issues I have cognitive issues that are still getting to me, 14 months on. Witness today, a phone call to my bank that had me stuttering and muddled and confused. When that happens I think “I’m an intelligent woman, why can I not grasp this?”, even though I know that I’ve come an awful long way. I can’t believe you were told not to contact Headway. I have my Headway card to show people when I get muddled, and I have many friends on the SAH forum that have turned to them. They have not been turned away at all, so if you feel like they would help, go for it! Good luck :)

  40. Like Roobeedoo – I cannot find the words – but reiterate what she said. I, like others, suspect when you are exhausted and frustrated and just sick of the whole damn situation. You are very good at getting through these bouts and then analysing and writing about them – always with an upbeat, positive outcome. You certainly know how to put things in perspective and make us think about what is really important in life – I value and thank you for that.

    I can’t speak for others but I do feel that you have shown me how to get on with life in spite of the shite that gets thrown at you – again and again. I think the most positive outcome of this post (and others where you have written so articulately and honestly) is that although you were writing about the effects of your stroke it has never defined you. You are not ‘the lady who had the stroke’ you are Kate – strong, fiesty, intelligent with a great sense of humour and out to conquer the world – and you know what, that is exactly what you are doing.

  41. I sympathise about being discharged, I remember that moment from the hand rehabilitation clinic following an injury when I had finally just about got movement back in all my fingers and thought the ‘rehabilitation’ was about to start, only to be promptly discharged without any actual physio ever having happened. The clinic had been a huge emotional support following my accident, and I felt bereft, and as if I was not thought worthy of any more help and just had to get on with it.

    I also think there is a real pressure to minimise people’s experience, born out of a rather naive idea that a. we would all cling to the ‘sick role’ if allowed to, and b. that the ‘sick role’ is always a bad thing to adopt! So you are told you have not had enough of a brain injury to warrant contacting Headway, and probably the physio thought s/he was giving you good news in telling you that.

    As always, thanks for telling us how things are with you. It is fascinating reading your account. I hope the marathon goes well, and I am envious beyond belief of your van!

  42. Thank you for the reminder to this health care worker, that even though someone may be making “amazing progress” or have a problem that in relativeness one may passingly consider “minimal” it is still not what you were before. It is not what once was, which in some respects is what you want to get back to. Thank you.

    Even if Headway cannot work for you (and I have no idea if they can or cannot), they should have an idea of what is out there for you.

    Hooray to you for not accepting limitations imposed on you by either other’s opinions or your own. You never know how far you’ll get until you try.
    Or more poetically.
    “Aim for the moon. If you miss, you may hit a star.” -W. Clement Stone

  43. Hi Kate, thanks for writing this. As always, you put it all better than I can, and I am grateful that you do.

    That ‘advice’ about Headway was, frankly, b****cks. The staff at Headway could not have been more helpful to me, and I am not half as badly injured as you. When I apologised for bothering them with my relatively trivial concerns, they told me not to be daft (only more tactfully than that). Please do give them a go.

    Also, for what it’s worth, I would say don’t beat yourself up about being self-deluding early on. It’s a survival tactic that most of us use: we need to believe. The long, slow haul of a chronic condition (especially when cast adrift from medical support) is an entirely different deal, one which you really didn’t need on your mind in the early acute days. Now is the time that some kind of psychological counselling or support – e.g. from Headway – could be extremely helpful. I’m willing you on, you and your FAB van and your lovely lads.

  44. While not a victim of stroke, I’ve been dealing with chronic pain issues for over a decade now. I can totally relate to much of what you wrote up front. Though you’ve put it much more eloquently than I could. I admire your perseverance and positive attitude of the later part of the post. Perhaps it is because I’m in the midst of a particularly bad bout of pain without the aid of any medications due to insurance issues, but it seems so strong and brave – and completely out of my reach to grasp that positive mindset right now. Thanks for sharing your story!

  45. i think i’ve read, maybe even here, that strokes and other debilitating illnesses involve a loss of who one was “Before,” and mourning is an intrinsic part of the process. it’s difficult to see the beauty of who and where you are now without mourning who you were before. the present life becomes merely a shadow.

    but that mourning, that “sinking in”, is a series of milestones that occur with different timing for everyone. it’s a long process of rises and falls and flat bits. in the mean time, advice unappreciated is meant to be stockpiled for a more convenient season, and “self delusion” gets you farther than you would have gone otherwise.

    to gorse-ness! it’s strange how well beauty restores spirit.
    good wishes and love.

  46. This post is beautiful and truly made my eyes fill up. Your blog is one of the strongest that I read and you are such an inspiring person.

    It’s just one day at a time. And I’m glad you have a special person by your side to help you get through those not too great days.

  47. As you say so eloquently Kate, all bodies are in the process of becoming, if only as they age. At 37 I suffered an acute viral infection that nearly killed me and left me with damage to my brain that resulted in many symptoms similar to your own. Everything shifted, it wasn’t just that my body was less reliable than it had been – like you I suffered terrible fatigue, chronic pain, and had problems processing information – but in addition smells and tastes that I had loved became unbearable, while others I had previously disliked I now enjoyed … I really was a whole new me, and I had to learn to like the person I had become. For me the journey was less about accepting my recently acquired limitations than about understanding their irrelevance in the light of all the other things I could do but had not previously thought to try. That was fifteen years ago and I am much improved (although the fatigue and muscle pain have never really left me), and looking back I can honestly say that my illness opened as many doors as it closed … I sincerely hope that the same will be true for you. I now have a progressive illness (rheumatoid arthritis) as well as the continuing chronic one and am having to adjust to yet another emerging me … but also like you I have the most amazing husband and the company of some life enhancing hounds, and I can still get out to smell the gorse :)

  48. Thank you. Just thank you. For being you…and allowing yourself to be you…and for sharing your journey with us.

  49. Hello Kate,
    I’ve the same view as others – contact Headway. If you don’t ask, you don’t get (especially from the NHS), and *they* will be able to advise you if they can offer you help or not! I feel indignant on your behalf at the comment from you physio.
    I have to thank you for your previous post re the non-judgemental fatigue management literature from Headway. I sent a friend a link to your post (his doc has diagnosed CFS but he’s in the denial stage – it’s heartbreaking). He said your post exactly described his fatigue symptoms.

    Thank you again, you’ve reminded me of the lovely phrase ‘when gorse is out of season, kissing’s out of fashion’, which my mum and grandad would say when we were on walks in the south west of Scotland on childhood holidays!

    Good luck Tom, let us know your time! Here’s hoping for cool weather and a grey sky so you don’t get dazzled/burnt/hot!

  50. Don’t take no for an answer, and don’t let people tell you that you are not “disabled enough”. (That’s a ridiculous phrase.) You have made huge strides, but you are still personally very disabled. And if you didn’t have Tom, where would you be?

    Send your post to Headway (to many people within the organization, starting at the top), and ask them directly to take you on. You are very young, and need everything that an organization(s) has to offer. It is the responsibility of organizations to help when help is asked for–even if you’re in a class all by yourself and they are unsure what to do….

    Speak up and ask everywhere for continued treatment and referrals. You are a poster patient if ever there was!

  51. I have followed your blog for the last 18th months, with much admiration and respect. What you describe in the last post is very similar to old age, I am about thirty-five years older than you, up till about two years ago I was in good health, then osteoporosis set it, and just before Christmas I fell and broke my femur, which meant I had to have a metal plate inserted, and since leaving hospital I feel I have aged a great deal….all the morphine and drugs I had muddled my brain, if was six weeks before I could cope with the Daily Telegraph ‘quick’ crossword, and three months before I could finish the cryptic one. For a time I thought I would be knitting garter stitch squares for the rest of my life (and I managed to do that wrong, put in the odd purl row…)

    But things have improved, I have discarded first wheelchair, then zimmer frame, I’m now on to a walking stick – very flash, bright pink with silver dots. Last week I managed to walk out of the house for the first time for five long winter months on my own, just 75 yards to local shop, but it felt like freedom. I know I am still going to have the osteoporosis, which will probably get worse, but hopefully my leg will still improve – I can’t walk very far without wanting to sit down.

    The gorseness is actually right, I think, but in my case it is my garden, it was where practiced walking, every day, come rain or shine, I have always loved it but have become so much more familiar and appreciative of it now. And now I can get in and put of a car with comparative ease, I get to go out which seems wonderful.

    It is not so much acceptance as adaptation and change, you have to find more and different things that give you pleasure, and that you can actually do, which you may not have done before. I make cakes….. And realise that the old life you had has gone, in my case it is not going to return, so I have to find a new one. Not easy, but helped by a loving (if doddery – he is even older than me…) husband, and children and grandchildren who luckily live near I have confidence (on good days..) that I shall get there.

    Your blog has been such an inspiration to me. Thank you. I get very cross with doctors whose view is ‘Well, at your age…’ This is not dissimilar to you being told you are not disabled enough….. With your attitude i feel sure you will get wherever you want to go.

  52. Being disabled by chronic illness all my adult life, I well understand the issues with being held hostage in a “wonky, uncomfortable body.” What’s even worse, I find, is living in a culture that places little value on “gorse-ness,” because it’s the purity of simply being in the moment, especially out in nature, that I find most therapeutic. And I get little to no support or validation from the world around me for living that way.

  53. Thank you Kate once again, for your post written with such honesty.

    Dr Edward Bach chose Gorse as one of his 38 flower remedies and wrote “the positive potential of Gorse is a sense of faith and hope, despite current physical or mental problems ”

    It’s profusion of sunshine yellow flowers and heavy surprising scent of coconut, certainly sings out to be noticed.

    I wish you well.

  54. A part of life-changing illness and trauma that is under addressed (in my opinion) is that it comes with grief. We whose lives have been changed by chronic illness are grieving not only the lives we used to have, but the lives we thought we WOULD have.
    This is true for the person with the injured life (me) as well as the person who shares that life (my beloved Oscar). When we got married, we planned to celebrate our 10th wedding anniversary by hiking part of the Appalachian trail. This is our 10th year of marriage, I am in a wheelchair and we will celebrate by doing something else. Do I miss hiking? Damn straight I do. But I am also very glad to be here, able to celebrate with a very special man.

  55. Ah, life. If we’re lucky we can adapt to its inevitable changes, accept them and move on. Granted, some of us must face more challenging changes . . . Kate, you are so brave and so fortunate to have Tom and Bruce. Take care of them and yourself.

  56. I am so moved by your post today. Through all your challenges you lift your head and see Tom and Bruce just powering love your way and somehow a new path is revealed. I hope this makes sense. I am wishing Tom the weather he likes best on Sunday and feet that fly!! A pat for Bruce too.

  57. Some years ago, whilst visiting my parents in London, we rented a similar van and drove up to Scotland to see other relatives. It was a wonderful holiday and I can appreciate your delight in your new wheels.
    Also appreciated, is your candour in sharing your feelings with us all. Thanks. Food for thought.

  58. First of all, thanks to you, I have a serious case of van envy and find myself poking around on the internet and daydreaming about having a camper van for my very own. Secondly, you continue to inspire me. Third, some of what you describe about your condition reminds me very much of what my girlfriend, diagnosed with Multiple Sclerosis about ten years ago (in her early 30s), faces. Not sure what the equivalent organization would be for you in Scotland, but here in U.S. we have the MS Society…I would think age-wise if not neurologically, there would be common ground there. And finally, what you write today reminds me of something I read this morning about there being small miracles flopping around our feet like “little silver grunions at the water’s edge,” and that we are mostly oblivious. But that if we start noticing them more, we might find ourselves swimming in small miracles. I loved the image. Thought you might too since you’re a “fishy” kind of gal. All best wishes for you always. S.

  59. Loving your posts, Kate, since I came across them soon after a friend had her own stroke. Just a little caution about Bruce. We used to let one of our dogs jump like that. He broke his leg. Twice. Would hate to have Bruce join the wonky leg club. He looks like such a love.

  60. I agree with the commenter who has “van envy.” I have always wanted one of these and my husband and I have even fantasized about how we would outfit our ideal camper van. What a joy that yours comes with husband and doggie! Enjoy your summer in the hills.

  61. A thought: Have you heard of Feldenkrais therapy? If not, it might be worth looking into, to see if it interests you.

    An appreciation: Kate-ness.

  62. I do get cranky with assumptions that people should fit certain groups, or timeframes, or age-related anythings, really. You may not be in the most common demographic to have had a stroke, but here have been many others of your age and younger. There is really no excuse for even an overworked health system to want to fit you into a slot you clearly don’t fit.

    Oddly, you can do a lot of the work on your body yourself, but your brain will take its own sweet time and go on in its own sweet way, so that could quite rationally be the thing that you need most support about. If that makes sense. It’s up to you to determine what your needs are and how to get them met.

    And many, many props to Tom. He must be a very special person.

  63. What to add? That Tom looks very fine indeed in a kilt – the running must be good for the calves, don’t you think? That an appreciation of gorse-ness and raisin-ness sounds like a very wonderful thing indeed. That Pollyanna or no, finding joy in these things can only be a good thing. And that I shall be rooting for Tom on Sunday. Hope the day is a good one.

  64. Hi Kate

    this is only the second of your posts I have read and I was very moved by the struggle you describe, and your willingness to share.

    If it’s not too intrusive I have some suggestions for you, which you may have heard already (and feel free to tell me to get lost, I won’t take offence).

    The first is mindfulness meditation. I think this is what chewing the raisin was about, but it may not have been presented well. I recommend the work of Jon Kabat-Zinn who has cd’s or can be downloaded. You can also see him talking on Utube. Meditation really does help to reduce stress, which can aid recovery. Kabat-Zinn also has a cd on meditations for pain which might help if that is a problem. My son has MS and has found meditation incredibly useful. A recent study has shown it has big benefits for MS patients, and I’m guessing the same might be true for stroke patients.

    There is a book you might be interested in – The Brain that Changes Itself by Norman Doidge, which is about the ‘neuroplasticity’ of the brain, and how we can ‘teach’ our brains to function after life changing traumas. One chapter is about people who have had strokes, and the work of Edward Taub who has developed a programme to work with stroke patients. With your determination you might find it worth following up on.

    Hope this is of some help. I love your knitting patterns and am waiting to get the right yarn to make Manu.

    Good luck, T

  65. Kate, You’re so skilled – you’ve given yourself some cognitive behavioural therapy all on your own. Your post moved me very much and reminded me of how long it can take to adapt to unbidden new situations and how one can have an unconscious desire to return to the past. You’ve come a very long way in a comparatively short time, I think the milestones are likely to be less dramatic and further apart, but I’m sure you will continue to improve. Saskia

  66. Thank you for this post Kate, and indeed for your whole blog. My own chronic illness is very different from yours, but raises some of the same issues. To keep this brief, at some point you might like to look into Satyananda Yoga – I thoroughly recommend it and think you too might benefit from it.
    Helen

  67. Kate, I was interested in what you said about not fully coming to terms with having a stroke earlier in your recovery process. I think that sometimes we protect ourselves from unpleasant or unhelpful truths when they would distract us from the simple act of getting through a difficult situation. I know there have been many occasions where I’ve thought that I wouldn’t have got through something if I’d known in advance how difficult or painful it was going to be. Perhaps you would have devoted less energy to your recovery, and recovered less than you have, if you’d thought that you wouldn’t reach your pre-stroke abilities. Perhaps that delayed acceptance was a good thing.

    Best wishes, anyway. And good luck to Tom.

  68. Acute is indeed easier to handle than chronic, no matter what the affliction. Your writing will, I hope, continue to help you deal with things as they come and establish a new well-being. Gorse-ness is good, as are walking amidst the gorse and watching your dog fetch sticks.

  69. Kate,
    What you have written here feels like a revelation, a “moment” on a trail to peace. Though what started my journey was nothing like what you experienced, I feel I’ve walked a similar road, mentally, at war with myself. Your stubbornness, anger and frustration (similar favorite traits of mine) will help you as you push forward, I believe. They helped me push forward to find answers to questions I didn’t really want to ask myself, because I couldn’t let myself leave them unanswered. I wish you sure footing on your journey, and soft mossy pads to catch you when you fall. Thanks for sharing your jouney as inspiration to us all!

  70. If the Headstart group doesn’t want to work with you let them be the ones to tell you so, the doctor is in no place to tell them how to run their organization. At the very least Headstart will certainly know the best long-term resources to direct you to if they are unable to work with you. I’m certain that they keep an excellent list.

  71. Good luck to Tom on Sunday, I’ll be in the Big Smoke cheering on my boyfriend’s brother so I’ll spare some cheering for Tom too.

    I’ll have to keep an eye out for a lady in some tasteful handknits too, I think she needs some cheering on too.

    Nina x

  72. Oh that dratted becoming that we always seem to forget to factor into our plans! Well, if the ability to examine its effects and articulate one’s findings is any indication, your progress is moving at warp speed:)

    • I enjoy reading your blog; your comments are always thought-provoking, and I love your designs. Today, though, I want to thank you for sharing your thoughts (and feelings) on dealing with brain injury. I have a new appreciation for my husband’s day-to-day struggles; he has symptoms of brain injury but no diagnosis, which just adds to his frustration. You give me hope. It is a great gift.

  73. Sooo jealous of your van!

    I’ve been doing the Feldenkrais technique recently – it’s a bit like the Alexander technique only more scientific and flexible. It’s all about neuro pathways and finding new ways of movement. I suddenly thought it might be of interest to you if you haven’t come across it already. You’ll need to find a practitioner – it gets done to you, and you can also practice it yourself as a way of retraining posture and movement. It operates on the idea that muscles and processes in the body have their own sort of memory – that’s a crude way of putting it but it’s one to think about anyway. xxx

  74. I’m an OT working in the ‘dreaded NHS’ in Scotland and was passed the link to your blog from a speech therapist who is very very interested in your knitting. (I am too, by the way, but oh so very much in the baby-amateur group. my goal is to knit one of your patterns before I die. not sure if that’s a realistic goal considering my impatience and lack of attention to detail, but that’s another story).
    Anyway, I work with people who have had strokes, and wanted to thank you for your brilliant articulation on the subject of all things to do with ‘rehabilitation and recovery’. The NHS (if I may generalise) are good at pigeon-holing people, including therapists! I work in ‘community rehab’ and it can be frustrating, as we are restricted by pressures from accountants when we would dearly love to keep seeing people as I feel we’re just getting started with rehab, to have to justify why I’m still seeing people more than a year after referral. I think the same as a lot of people who have commented here, I always tell people about Headway, I rave about them, for the very fact that they don’t pigeon-hole people. Do it do it!
    I will continue to enjoy your blog, and I have severe photo envy. Oh to have an ounce of your creativity!

  75. Thank you for another inspirational post. I was very moved and at first lost for words. On reflection I think that the NHS is focussed on illness & disability – rather than on wellness & maximising ability. In contrast, few years ago I went to see a private physiotherapist for a minor running injury, and was given support not only to heal from the injury, but to strengthen myself in a way that would help prevent myself becomming similarly injured again; the focus was completely different from an NHS physiotherapist. Although I was distressed at first to see that my therapist was a young man who specialised in sporting injuries (as a middle aged woman who has never been any sort of athlete I felt very self concious) his attitude to diagnosing my weaknesses and helping me to overcome them was very helpful. I realise that my situation was completely different from yours – but the therapist was so knowledgable and versatile – he knew how different muscles in the body supported and affected each other. I am sure he would have been able to support you to protect your strong side, and develop your affected side and correct some of the secondary strain that is being placed upon your body. It is a shame I live too far away to recommend my physio – but you would know if you found the right one!

    PS – Just spent a day in the garden enjoying the robiness of a very special little robin who has stolen my heart away!

  76. I like you, am an academic, and last year I had my first bout with chronic vertigo. I have the positional kind, (which is fixable with PT) but it took them a while to figure that out. Anyway at the time I still had to teach, and I could barely move without threatening to fall down so I was walking with a cane for balance. Without it I had to hold onto the wall.
    .
    One day I went to my teach my history of Christianity seminar several weeks into the vertigo and slowly made my way down the hall. I was sick, I was tired, and the last thing I wanted to do was go through Martin Luther’s writings. I made it into the room and sat down, exhausted, and looked at my 10 students wondering how I was going to survive the class, when one of my male students reached over for my cane and said ” Dr— if that cane is going to be around for much longer, we are going to have to spice it up! You can’t be having a plain black cane- I think we need to Beadazzle it!” The rest of the class roared and started shouting what else the cane needed– stickers, maybe some sequins, jingle bells and glitter. And I started to laugh and laugh and laugh until tears rolled down my cheeks.

    Those seminar kids kicked me out of my darkness. I was still exhausted, but I was able to summon up the inner fortitude to lead them through Luther, and to smile for the rest of the day. Sometimes that is all you need. Sometimes things still hurt and suck, but if you can just find something to be happy about you can keep on rolling.

  77. Your post brings back memories of when I was “dumped” by physiotherapy, doubtless for cost reasons (my regular physio wouldn’t even do the exit interview, and passed me off to someone I had never worked with).
    I made the mistake of simply increasing my everyday activities as a substitute for physio. It wasn’t enough, and I experienced a dip in my abilities and stamina, followed by a “miserable fit of the blues”.
    Stubborn facts being what they are, you need to keep up the work, with or without the NHS. Sorry to sound bossy, but having been down this road…

  78. Hello Kate,
    i was shocked when I originally read of your stroke, and I have followed your progress but do not comment. Recently I have wanted to suggest you contact
    http://dancingbeastie.wordpress.com/ a woman living in Perthshire who suffered a severe head injury while skiing but did not realise the full significance until later. She too suffers fatigue, but I am sure she has mentioned that Headway has been helpful to her. I think your experiences – pre and post injury – cover common ground and I believe you could be mutually supportive and could learn useful coping strategies from each other.
    Strength and health,
    Sine

  79. Here’s another voice for not letting the NHS either speak for Headstart or decide for you whether you can benefit from Headstart’s help.

    Hurrah for gorse-ness! And for you.

  80. First of all, GO TOM! Because I will definitely forget the marathon is on, and he does deserve a good cheering on.

    Secondly, you are a marvel. I’m in a cast because of, ahem, overdoing it at sports, and after a week I still find myself wanting to go running/jumping/skating or even to simply do my own grocery shopping, then getting very angry when that I can’t. And my condition is fairly temporary! I will probably be able to go back to being “old me” (with a better diet), and you can’t, and I don’t know, I just want to give you a hug and say you’re making me feel better about sitting on my fat arse doing nothing. You’re quite amazing, you are.

  81. This is a wonderful post; you have so much insight. Could you go privately for PT ?
    Hope your husband does well in the Marathon !

  82. I’m always very thought-provoked by your posts of this sort, and always want to say something supportive – alas, what I’d usually say is very much in the ‘appreciating raisin-ness’ category! I do admire the way that you can write about your problems without coming across as self-pitying (which I don’t think you are anyway!). But I do reckon that you shouldn’t feel bad for feeling bad: everyone has a right to have mardy days and upset days and I-feel-strange days, without any reason at all, so you have more right than most. And then once those days are over, I hope there’s sun and gorse as well as Tom and Bruce to appreciate.

    (And go Tom, for the marathon!)

  83. Again you amaze and inspire me with your honesty and transparency throughout the journey you are now on. Also so happy you got the van, it seems to be the absolutely perfect thing for your family.

  84. What I gravitate to in this post is where you wrote that there is no “old” you left, that she’s gone. I’m thinking she’s still there, she needs to integrate with the distinctly “new” you and then you will have both & something else too. When I was 17, I suffered a devastating injury that ended my sports career (and I actually was headed toward a sports career.) I could walk after a few weeks but my knee was demolished and especially b/c I was so young, I never consciously addressed my future limitations (which include secondary injuries that I didn’t even address at the time.) I am now 40 and have finally recognized the “new” me. I am not happy with her on a physical level but am somehow relieved that I no longer avoid my physical reality. It seems I have accomplished a synthesis of my “old” self and “new” self. But it took a long while and I suspect I’m average….

  85. I wish I could put into words the way I feel as well as you write Sometimes I feel as though you are looking into my brain the way it was 13 years ago. I’ve commented only once before on your blog although I read every post. I also suffered a stroke when I was 37. So did my sister. There is still no explanation as to why we both had strokes at such a relatively young age. I have had several other “small” strokes since then. I still have to deal with short term memory problems, unexplainable weekness in my legs and sometimes extreme fatigue. I look perfectly healthy and sometimes have had people say very insensitive things about my not trying hard enough to remember something, or why do I have to rest so much? Of course, these people weren’t around years ago when I couldn’t do much of anything. I’m so much more recovered that unless you knew I had problems you wouldn’t guess. I think they believe I’m stupid, (memory loss) and lazy, (physical limitations). I have to remember to not let those people define who and what I am.

    I rely very much on my knitting for various charity groups, my friends and most especially my wonderful husband to help me get through the life I am led to live.

    Thank you for sharing how you feel. You speak for many of us who don’t have the talent with words that you do. I appreciate you and I know you will continue to improve, day by day.

  86. Hi,
    I have just found your blog, which I like very much.
    Thank you.
    I had a small stroke about 4 years ago.
    I made a good recovery, but was left with some weakness.
    I just wanted to tell that I am still improving all this time later.
    For about a year I had physiotherapy to help my left-sided weakness, and continued with the programme for about a year after I stopped the physio visits.
    Now I have an exercise regimen which I follow: weights alternate days and back and core strengthening exercises every other day.
    I also walk a lot, walk to work ( I work 3 days per week).
    I read a book that might help you: The Brain that Changes Itself, by Dr N. Doidge. Don’t despair, just keep at it.

    Karen.

  87. i also have a chronic illness and have actually gone through the exercise of spending 5 minutes enjoying the “now” of eating a raisin. i found it annoying. but i would like to find the gorse-ness. perhaps this city bound girl will find it in her garden this spring.

  88. I had guessed you were in a rough patch. You’ve got so many people anticipating and worrying about you, with our radars keenly suspicious. I am delighted to read about your getting into the Gorse-ness of things . We have it too, or something closely related, and funny thing is (get this, it’s an invasive species on the mountain here) normally I’m pulling and breaking it off as it closes in my walking paths in areas, but after reading this post, I actually grabbed a willowy limb of the yellow flowers, to try to detect the coconutty essence. I do smell something very pleasing. I would have not done this had I not read your post. See, your expression has a mighty rippling out affect, to those of us who care about you.

    Walking on the mountain, thinking sometimes of you walking on yours ~

  89. I agree, acceptance is hard to come by. What is the line between acceptance and resignation, for example, it can feel like a very fine line indeed. It seems like you are rehabilitating your body and at the same time, learning a whole new way of training your mind. Quite a lot to be doing. Might take awhile.

    All my best for the London Marathon.

  90. I haven’t read all the comments, so forgive me if I am repeating anything, but isn’t it up to Headway who they help? Maybe I have misunderstood, but if it was some outsider trying to put you off approaching Headway, that organisation might well be a little upset by that. I think it is up to you if you want to approach them.

    All the best. Loving the blog, as ever!

  91. Thank you for taking us on this very personal journey with you. I am learning the lesson of co-operating with the Inevitable. The It Is So. It cannot be otherwise. I used to fight it and be angry over things I could not change. I now base decisions and reactions of situations on whether I can change them or not. It’s changed my life.

  92. I wondered if you might be in a rough patch. Firstly, talk to Headway, don’t talk to Headway – it is entirely up to you, and nowt to do with the opinions of NHS therapists, who have other (financial) pressures, a ethos on curing sick people rather than wellness, and probably were trying (in a cack-handed way), to stop you from seeng yourself as a brain-damaged person.
    Secondly-living in the now is incredibly hard. There are whole schools of thought (Zen) devoted to it, or therapies for achieving it (CBT). Yay to you for managing by yourself!
    Thirdly – good luck to Tom in the Marathon. Just back from London, and the weather won’t be as hot as it was last weekend!Sadly, didn’t manage any textile shops, so I hope you do!

  93. It is not being Pollyanna-ish at all. It is completely normal to have those kind of feelings. I went through similar sorts of emotions when I found out the clinical depression I have will never go away. I felt cheated. Over time those kind of feelings faded. If there is an agency you want to contact….go for it. You are entitled to.

  94. Dear Kate
    You are strong, wise and intelligent. I wish I knew you personally. And Tom, fly like the wind in London.

  95. HEY KATE – my father used to say “life’s a bitch and then you die”LOL—-well you have reached and passed another stage of recovery – its hard not to be idealistic , and not to have the ‘cure’ after all your hard work — but life just goes on in new and unpedictable ways and its like you are doing, dealing with it

    – you write it so well — its hell and there is no other way to put it , BUT and a big but, you have TOM , who you love and who loves you – we won’t forget BRUCE — laughter and love are the best therapies
    – GO TOM GO ———-best wishes and hugs —pat j

  96. beautiful & interesting meditations. i’m glad you’re feeling better, & i wish you fortitude in your new post-physio life.

  97. Please do contact Headway if you still feel inclined! They should at least know how much their literature helped *you* in a particularly difficult period. I cannot imagine that the same people who published that pamphlet, which addresses so many of your concerns, would turn away your questions now.
    Not to mention the fact that perhaps your words could be of use in helping other people in similar situations. Your eloquence on the subject of your stroke is interesting and inspiring to so many of us.

  98. Two years ago I suffered also from a life altering event and found myself wondering when I would be back to my “old self.” Only recently have I realized that that person is not gone but has changed into this new person. That I am in constant flux and that is the way of the world. These events change and define us and although painful and full of challenges, I think that at the end of the day I am a better or at least a more interesting person for having lived and survived them. I often think of this quote by John Greenleaf Whittier when I find myself feeling low. Perhaps it will something you can relate to as well.
    “No longer forward nor behind I look in hope or fear;
    But, grateful, take the good I find,
    The best of now and here.”
    Take good care and I look forward to hearing more from you soon,
    Adrienne

  99. I’m just joining the chorus of people saying ‘contact Headway’ – but I expect you’ve already done so, or are about to. I’m sure they will be helpful… the Stroke Association are very much aware of younger people and stroke, but some parts of the organisation have yet to catch up (I remember my mother saying she wasn’t old enough for them, and she was in her seventies).

    In the meanwhile, hope the marathon was marvellous!

  100. Kate , your strength and eloquence are inspiring.
    Hope Tom is having a marvellous Marathon day. Would love a link to his sponsorship page

  101. I am, as always, in awe of your ability to put so many complex thoughts into words. I’m also amazed by your willingness to share something so raw with us. Wishing you much gorse and Tom much cool weather (though, since I already heard there was a winner, my wishes may be too late to change the clime).

  102. I’m re-posting my reply, as I mistakenly replied to another’s comments the first time. If you’ve already read what I posted, please feel free to pass on by!

    I enjoy reading your blog; your comments are always thought-provoking, and I love your designs. Today, though, I want to thank you for sharing your thoughts (and feelings) on dealing with brain injury. I have a new appreciation for my husband’s day-to-day struggles; he has symptoms of brain injury but no diagnosis, which just adds to his frustration. You give me hope. It is a great gift.

  103. your knitting has thrilled and satisfied me from the start as well as your unimitable sense of style. When I read about your stroke I was horrified, but gradually, ever so slowly, began to breathe more easily as you allowed us access into your recovery progress. I want to tell you Kate, that you are often in my thoughts – and especially in the early mornings when I walk the 2.5 miles with dear over-weight dog. Sometimes it’s so hard to drag oneself out there – but essential. SO I think of you and how far you have come and how far I KNOW you will continue to go. Inspiration – that’s what you are. Hang in there.

  104. Kate, what strikes me most about this last post especially and the countless responses to it by people who identify with your situation, is that your writing expresses what many others are unable to….. for whatever reason. More power to you – creative, critical and insightful indeed. Best wishes and thank you for sharing so honestly.

  105. I felt a similar way about grief. Sometimes I miss the heady first days off loss, I actually feel an awful nostalgia for the times when it was overwhelming and fresh. It was surreal and strangely comforting. When all you can do is keep your head above water, at least you know what you’re supposed to be doing. Two years in, I still deal with grief every day, but other people are less accommodating. There are fewer ‘of course you’re upset and tired’ and more of a ‘get on with it’ vibe. Which, of course, I do, but…
    I felt similarly, too, in the first few months. I wanted it to be over and to get ‘back to normal’. Unfortunately, there is no such thing, and in wanting to go back to how things were I was dooming myself to always being disappointed, to there always being a Before and an After. Things changed before, why can’t they change now? But a big split like that makes it hard to be philosophical.

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