As I’m trying to record my experience of recovery honestly, it is worth pointing out that things aren’t great for me at the moment. Someone mentioned the other day that I appeared to be “moving on” from the stroke — unfortunately, there isn’t anywhere to actually move to – the stroke is with me every single minute of every day. I don’t know what I thought the effects of the heart procedure would be – I certainly thought I would feel a bit better or something – but the fact is that I am exactly the same as I was before, just with added headaches and bruising (the effects of the post-op blood thinning medication). I am still dealing with what the stroke has left me: a lame leg that goes into spasm at the least opportunity; a weak and unreliable arm that still, at times, won’t obey my brain’s commands; crazy, unpredictable fatigue that can wipe me out for days; and some other weird, residual effects of brain injury that make everyday life rather tricky. The stroke has robbed me of my freedom. I can’t get up in the morning and say, ok, today I will read this, or write that, or perhaps do a little designing, because I just don’t know what the stroke has in mind for me. I might be able to do some or all of those things, or perhaps none of them at all. The day might be one of struggle, as I find it difficult to make breakfast, have a shower, or take Bruce outside, or it could simply bring an unassailable concrete wall of fatigue, and several hours in bed. I would really like to be able to plan a day’s activities, and at the end of it, feel I’d accomplished what I’d set out to, but at no point in the past six months has this been even remotely possible. It is especially frustrating making plans for nice occasions, only to find that I am then too tired or woozy or weak to actually enjoy them. Yesterday, I hoped I might actually be able to manage to get out to go to the pub with some friends — but I knew by 7pm that I’d just have to go to bed instead. So I find that there is no freedom to plan ahead, and I also can’t do anything quickly, which to an impatient and (usually) high-energy person like myself is unbelievably frustrating. Everything takes so much longer, and the simplest task becomes a mammoth undertaking.

Possibly one of the worst things about my current situation is that I can’t enjoy many of the things I used to, because my brain simply won’t let me. Though my memory and cognition are absolutely fine, and though many of the weird residual effects of the stroke (such as the vertigo) seem to have thankfully gone, I still have trouble concentrating for any length of time, and, particularly when I’m fatigued, my brain finds it really hard to deal with more than one thing at once. What this effectively means is that it is hard for me to put the right bits of information in the right boxes, or to filter out what I need to focus on from what should be in the background. I find this particularly difficult with sound, and most especially with conversations. Being around lots of people talking can be very peculiar. This was one of the most sad and dispiriting things about my experience of Stirling a couple of weekends ago. I sat down at a dinner table with ten great women, who I had been looking forward to seeing for months, but what should have been a lovely occasion actually turned out to be a frightening sort of hell, because everyone was talking at once. I am told that this is a very common post-stroke symptom, and that it should settle down in time, but no one can tell me when, just as no one can tell me when or indeed if the fatigue will go away.

In the past, if I was feeling low, my principal (and highly effective) strategy was to do a lot of exercise. I found that I could often walk or run myself out of a black mood, and that a day in the mountains always helped enormously. But now I don’t have that option anymore, and, in fact my physical in-capability simply compounds the immense frustration I feel in my blackest moods. One of the worst things about depression is how sensible it seems. Depression is smart and rational: be realistic, it says, this is what your life looks like now. Depression looks at your daily struggle to get well, and all the small joyful things that you take heart from, and says, how berloody foolish, how fatuous, how stupid. It is an evil beast, and I am trying my best to shake it off, but have to say that right now I think it is winning. I find myself waking up every day and wishing that I could just have one day of being like I was before, one day in which I hadn’t had a stroke. This isn’t good. A medical professional recently told me that I had not come to terms with the stroke. They are probably right. In fact, coming to terms with it seems to me like giving in, or indeed, accepting what I think in my lowest moods, viz, that I am now lame and weak and slow. What keeps me struggling on: working at the exercises, and walking up the hills, is a refusal to accept this, in the (vain?) hope that at some point there won’t be anything to come to terms with. Perhaps the problem is that I’ve been struggling away at this for over half a year, and it just seems like an awful long time…. We are going away on holiday soon, and I am hoping that this will lift my mood. But what I really want is a holiday from the stroke, and there’s no way out of that one.

139 thoughts on “

  1. I think your honesty in recording your highs and lows is helping a lot of people. And to you 6 months must seem like a long time, but really I think you have done remarkably well in that length of time. Take heart.

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  2. You’re awesome — do you know how much more you do on a “bad” day than I do on a “good” day?? You inspire me, and I am selfishly grateful that you are writing, designing, raising a puppy….as I try to knit one of your beautiful sweater designs, write a silly article, keep up with my pup.

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  3. Kate, the best advice I got when I was struggling with a big, dark hole of depression was to give myself permission. Give myself permission to just go to bed if I was that overwhelmed, as long as I promised to give it another go tomorrow. Permission to be sad without beating myself up for experiencing it. It wasn’t permission to wallow, but allowing myself to experience what I was feeling, explore the feelings, and then set about replacing them with nicer ones, even for a minute or two. Everyone’s experience of recovery (from, well, anything and everything) is different, but don’t forget to be nice to yourself in the midst of all this.
    Much love and hugs and excellent vibes.

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  4. Kate I have just recommended your blog to some friends of mine who have a young friend who too has just had a stroke. I know your insights will be so useful to them and their friend and will hopefully help them provide better support than they would’ve been able to without such an honest insider’s view of the whole experience. Your willingness to share both the good and the bad is really appreciated. Hope the holiday provides a real tonic for you. x Caroline

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  5. Thanks again for sharing the low times as well as the better ones. You clearly understand depression, but I know that does not necessarily making it any easier to experience it. I think everything you are feeling is natural and to be expected, though in your case the physical limitations must be even harder to bear than they would be for someone like me who would not have been so active pre-stroke. I hope your holiday is good, and you do have better times in the weeks ahead.

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  6. I’m so sorry that things feel so heavy and sad at the moment. Not accepting is both a burden of sorrow and a motivator to get out and kick that stroke’s butt by working hard at rehab stuff. Chin up and onwards!

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  7. Having gone through illness before, I can say for sure that you are at least demonstrating an enormous amount of strength and self-awareness–both essential things for making a full recovery. Chin up!

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  8. nieniedialogues.blogspot.com Time will pass, strides will be made. Be strong when you can and be thankful for knitting when you need a place to hide. I’m amazed at what you are accomplishing. Sending a heartfelt hug…Cheryl

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  9. I just started reading your blog fairly recently, and I have been amazed at your determination to get well. Having had a debilitating illness (nothing like so debilitating as what you are going through) I know the frustration of knowing that going to bed is the only option, no matter how much you want to go out and be with friends, or even read a book. I would say that coming to terms with your condition does not go hand in hand with giving up on trying to improve, or accepting yourself as somehow less than before. Accept that at the moment you aren’t able to do everything you want to, but please please continue to refuse to accept that this will always be the case. Also, it may not feel like you have made progress, but remember that you are seeing things from very close up, if you step back, and read through your previous posts you may see that your progress is much more than it seems to you..
    I will keep my fingers firmly crossed that you will, hopefully soon, get back the life you had pre-stroke, or that at least you get back a life that is equally fulfilling.

    I hope you have a restful and relaxing holiday.

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  10. It is frustrating to know what you have been and were capable of, in comparison to what is the ‘now’. At the age of 44, I was fit, healthy & active and then I had a heart attack, out of the blue. I had 3 stents installed and was told I’d feel like my old self. Not! In fact, much of the way I felt, you have accurately described above. One day when I was whining to my husband that I wanted the ‘old me’ back, he said to me,”this is the new you … the new version”. Once I stopped striving for the “old me”, I was able to make peace with it … but, it took me a good year or more. I can appreciate that 7 months feels like forever, but in the healing process, it’s not really that long. Give your body the time it needs to heal and become the new you.

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  11. I miss you when you are away on Holiday. You are like a sister. I hope that you are having a wonderful, restorative time. Much love to you.

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  12. Thank you so much for taking the time and energy to post all this, even when it isn’t what you’d like to be posting. I wish it were different for you, or that I could do anything to make it better, but as Liz (T) said, I don’t have anything more constructive than a huge hug! I’ll be thinking of you

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  13. As another woman who had a stroke at an early age, your post brought back many memories. At 6 months it is still too soon. I look back at now 17 years of living with the effects of a stroke and the first year is the worst. It went better year two, and frankly each year that passes you remember less of what it felt like before and “normal” starts to reset, the depression lesses. I wish I could say that it happens faster, but it does happen and now I can be thankful for the slower pace life and find great contentment in what I do have!

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  14. Sensory overload hit at the longed for moment? :( Bugger!! Did you survive? Break down in tears? Leave the room? Oh I’ve been there in all 3 scenarios and wish I had a magic wand for you. There will be ways of enjoying people’s company, but future planning don’t help the disappointment! Ditto with the exercise to stop the blues and frustrations. Destructive hobbies are needed-I like someone miles above in the comments recommending golf, might try that.

    I really hope that you have a lovely holiday, where are you going?

    oh so much I’d like to say, but it’s the first time I’ve been online in 2 weeks (we’ve moved!!) and so I shall leave this with a huge virtual hug.

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  15. It all sounds a bit rubbish at the moment.
    Sad that you can’t enjoy times out. I have a bit of a similar experience with social situations – if my pain is bad I find them really difficult – and you start feeling like you are not yourself anymore as you can’t express yourself or respond to people in ways you used to. Bloody tough.

    Its interesting what your healthcare person said about coming to terms with it too – they would probably say the same for me – I’ve been told different things, that I may or may not be in pain for the rest of my life, and I find it very hard to accept it – as you say, it is like admitting defeat, and hard to live without the hope of “getting better” – I prefer the ” you can get better” diagnoses obviously!

    The Human Givens book on depression really helped me – its a very pragmatic approach to dealing with that (as you say) “rational” point of view that is quite unhelpful and I found its given me lasting tools to deal with the bad days.
    http://www.humangivens.com/publications/how-to-lift-depression-fast.html
    I found bits of it a bit annoying, but could ignore them and use the good bits and I would very strongly recommend it.

    Its very exhausting having to manage a chronic health condition ALL THE TIME, never mind just having it. Remember you are doing brilliantly.

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  16. Your post made me smile a bit – I know a bit odd – but a lot of what you describe, also fits with being a new parent, and then a few years later…realizing that well, your life is just going to be forever altered. As a brand spanking new parent of a small babe – woa those first few weeks – with exhaustion, the learning curve, the want and need for social interaction, but just being too tired to enjoy said want. And when you have a toddler, everything gets interrupted all the time (grin) be it physical action or mental. Just does. Then you think life will get a bit back to normal – ie going out to adult functions without little ones – and enjoying them when the kids are a bit older. For me we do plan to go out, but then, well then my husband and I assess our mental energies, and socializing takes energy, and well, we stay in. There are far fewer of us readers that can personally understand what you are living through, but maybe a few more of us can relate a bit with being parents in that first year.

    I wish I could give you a joke, a card, something to make you smile and chuckle. (All I can offer is a reccommendation to watch episodes of Top Gear – they are my blah days to go to to find a great chuckle!) May the stars align :) and you have a wonderful holiday and may the holiday shake off that sneaky depression.

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  17. Hi, Kate

    One very stubborn American is rooting for you and refuses to stop!

    Go when you can, rest when you need to. It’s really what all of us should do. You lead the way.

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  18. Whoa cowgirl! You sustained a terrible injury to the brain, command center of all life functions. I confess that when I read of your aggressive expolits in the name of physical therapy I did wonder if you might be pushing yourself just a bit hard. Exhaustion makes it so much harder to cope with many of life’s “normal” activities, just ask any new Mother breast feeding her first infant, never mind the exceptional activities such as learning to walk. Depression is an insidious illness and there are pharmocological agents out there that can make a difference. Your blog is an inspiration to many (ie see above blog comments) in fact this is the first time I have ever been motivated to post a comment. Walking along with you from the great state of Texas USA

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  19. Hmm…’coming to terms’ …I’m sure your health professional meant this to be helpful but grieving is a slow and continuous process, but the loss of one’s identity is one of the most challenging and heartbreaking events to face. Everyone I know who has faced a huge loss in their life has continued to grieve long after the event. I don’t believe that there is a right way or a time limit on grief. In reading your extracts I am always impressed by your talent and enormous grit in the face of huge obstacles. you are in my thoughts.

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  20. Kate,

    I’m sorry to read that some days are so very bleak for you. It seem so completely unfair that this journey of recovery is not a straightforward and smooth path.

    I hope that your vacation will ease some of your troubles, even if temporarily, and allow you to enjoy the things that are dear to your heart.

    All the best.

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  21. Kate – Getting well is hard work and you have been putting all your energy into it. I so hope your holiday with Tom (and Bruce?) will give you a resting space to revive your spirit and energy.

    X

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  22. Dear Kate,

    I really appreciate being able to read your honest reflections. In some of the issues I am dealing with there is an element of grieving and I too struggle with “am I giving in?” Expressing and being present with my feelings is proving to be key.

    I have just read a book by Michael J. Fox, who was a successful Canadian/American actor in the 80s and 90s. He was diagnosed with early-onset Parkinsons and writes about his experience with the changes in his life-acts only in the odd bit part now, but started an organisation that in the last 10 years has become the largest in the world dealing with Parkinsons. Also writes about the other changes (oftentimes gifts) the disease has brought to his life.

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  23. Dear Kate,
    Thank you for sharing your journey, through the shadows as well as the sunny slopes I wish we all had magic wands, but they didn’t come with the package. I feel certain that you’ll journey more toward wellness than you have achieved in six months. I am certainly supporting you from Reno, Nevada. Please know that you’re appreciated and cared for. I am looking forward to your holiday with you.
    Much love,
    Jackie

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  24. Hi Kate,

    Just sending you a virtual hug from one left-sided wonky bod to another. They don’t tell you that recovery is a marathon. We start to see milestones as the finish, then realise there’s a dip in the landscape and the summit is still way above. We have to go down mountains to get back up sometimes – ah, the joys of Welsh mountains!

    Look back to see how far you’ve come, and remember you’ve done this yourself. As with any chronic condition, we have to celebrate the good days and rest up on the bad days. Even elite athletes need rest days. They don’t tell us that either!

    Look after yourself, and KBO!

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  25. I have a condition called Lichen Sclerosis (http://www.lichensclerosus.org/) and at 22 am only just trying to work out what this means for a life devoid of things I have always taken for granted.
    Your blog lifts me up, inspires me, makes me hopeful, and echoes so much of what I think and feel and struggle with.
    You are a marvellous, wonderful, shining example, however frustrated you feel or however difficult you find things.
    Thank you, from the bottom of my heart.
    xxxxxx

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  26. I’ve been reading your blog for at least a year now, and I just wanted to tell you that since your stroke I’ve found your writing more accessible and endearing. It’s not just that you’ve gotten more personal it’s that you’ve found a really graceful way of writing about some of the least graceful parts of being human. I’ve never had a stroke or cared for someone who had suffered a stroke, but I do know what it’s like to have to struggle with a sudden and dramatic life change. My only advice is to try to adapt as best you can. I can imagine it must be very hard not knowing what to expect from your own body. I’ll keep on rooting for you. You’re a very inspiring person and I thought that about you even before you had to battle with a stroke.

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  27. Kate, thank you for your honesty. You write beautifully, and your fight to fully regain your freedom and independence shows your courage and strength. Sometimes life just sucks. Grieving about your lost abilities, about your pain is all part of it. I only got to know your blog after your stroke, and you struck me as a very intelligent, courageous and creative person. The stroke did not take that away, although it knocked you over! It takes time to come to terms with trauma. Please allow yourself that time, and I am certain that you will find the strength and courage to walk on. And although the climb is hard, and you feel lonely in an icy world, try to keep walking, and all of a sudden you will see a glimpse of a more friendly and greener valley!

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  28. I’ve suffered all my life with a condition that affects me in ways that I don’t even understand. When I first found out about this condition I felt… trapped. Like a prisoner in my own body. I felt helpless, like the condition was in control and was deciding everything for me. And so I fought it, I spent so much time and energy trying to hide from it, ignoring it. But you can’t ignore something that is a part of you. We don’t get to decide what life brings us. Sometimes a fight is worth having, but sometimes… well sometimes you just have to accept it, and learn to live despite it. Around it. With it. I still struggle all the time with this idea, but I have realized that once you accept it, it makes everything whole lot easier. It may be a part of me, but it doesn’t control me. I have faith that one day you will accept your condition, but until then I wish you the best. I’ll be here rooting for you as you document your journey.

    I just finished reading Moloka’i by Alan Brennert. It’s a beautiful read, inspiring. It shed some light on this whole acceptance idea for me.

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  29. Kate – it is not at all surprising that you wake up every day wanting your old self and your old life back. That’s to be expected. Don’t add to it by thinking you’re wrong for feeling like that. What a huge thing to go through – of course you will feel a lot of grief for your old life, for your new situation. Fury sometimes too probably. (I guess that’s part of grief, really, isn’t it.)

    Anyway. Very best wishes and all strength to you. Your blog is great.

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  30. Thank-you for your honesty. You have allowed us a glimpse into your life and healing. I am honoured . You are so special. You are gifted in so many ways. This is what will carry you beyond this time. I am sure of it.

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  31. What Natalie wrpte is dead on: “Depression (as you described it) isn’t reality. It’s a distortion… with the bad amplified and the good things about your life receding into insignificance. ” I’ve experienced it, too, without the physical limitations and frustrations you are living with. My son giving me an orchid (of all things!) slowly spurred me back to life. It will happen; I just hope it is soon and the wait is not too unbearable. Hugs and best wishes to you — and pat, pat to Bruce.

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  32. But the direction is onwards and upwards always. i’ve been following your progress and progress it indeed is. What does it mean to come to terms with it? To wipe away your life before? start with new measurements? Or to come to an understanding of what you can win back and what will go in a new direction.
    In all negatives I have faith that there are gifts. I have a friend who is going deaf and blind. It has been hideous but she wouldn’t change it because it’s brought her closer to truths that other people push away, push down and don’t deal with. I had a friend who went crazy in front of my eyes, it was so scary, but it was also the most creative year of her life and she’s now an artist. Who knows what it may bring you.
    Another close friend is profoundly deaf (we’re a motley bunch) and the journey there is not to measure oneself according to outside things but to inside things. now things.
    Ultimately we lose everything in the end, the control our our limbs, our eyes, ears or mind. But we all do this together. Every single one of us will have to give up more than you have already. You’re within and with everyone. Just that other people don’t realise it yet. Maybe this might be the wisdom that on the other side will be a glittering gem and bring strange but wonderful gifts for you as it has for them.
    much love. xxxx

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  33. What a wonderfully supportive group of followers you have! Your honest account of your cognitive difficulties, exhaustion and (entirely understandable) depression rang so many bells for me. I was going to leave a comment but everything I would have said has been covered already – so just saying I hear you, and I’m rooting for you.

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  34. I don’t know how you can be expected to ‘come to terms’ with such a profoundly life-changing event in a few short months. Grieving (and grieve you must) takes so much longer than we think reasonable. It is clear from the outside that you have made remarkable progress in what is a really very short period of time. Unfortunately, none of us has the luxury of stepping outside and looking rationally at our achievements.

    I sympathise with depression. The cruelty of it is that it denies us the ability to see what we have achieved – only what we have not and the downward spiral can seem inevitable.

    Kate, you are an amazing woman and continue to be an inspiration to me. You will (in time) adapt to and learn to love the post-stroke you.

    Maybe your real (and utterly adorable) black dog can help you fight your metaphorical one. x

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  35. Dear Kate
    Thank you for posting the ups and downs of your recovery.
    It sounds to me like you are grieving for your former life (and it would be very odd if you weren’t). As someone who is grieving themselves at the moment, I have come to realize “coming to terms with it”, is a coming to terms with the fact that it is an process of adjustment, that there is no magic bullet or action that will suddenly make things better, that it is a long process, and for me, one that comes in fits and starts.
    (That sounds terribly woolley, I hope you get the sense of it).
    Acceptance is not apathy, rather I think it is a decision to deal with each day as it happens. This takes courage but, from reading your posts, you sound like you have more than enough of that.
    You may already be doing this but is there a support or online support group for *young* stroke survivors, that you might find helpful?
    Best wishes for your holiday.

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  36. Yes. You’re tired and want to put it down.

    And that black cloud is hovering ready to pounce and drag you down.

    It’s like having the devil on your shoulder and you are too tired to fight him.

    I am so sorry you are feeling this way – and I can’t say anything to make you feel better so ,like Helen, all I can do is send you a hug.

    Love

    Lizzi

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  37. I’m a new reader to your blog, but I want to tell you what enormous uplift your intelligent posts, beautiful designs and lovely spirit have given to me as I’ve gobbled up your entries. I am very sorry for your pain and I wish healing and peace for you. Stephanie

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  38. Just wanted to send you my hugs after reading this post today. Didn’t want to offer any advice, as this never works when I’m in such a depressive/destructive mood- just sympathy.

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  39. I’m so sorry you are having to deal with this. Life can be hard sometimes. Please try to focus on what is lovely, pure and true. You will get through this and come out stronger on the other end. God bless you, you are in my prayers.

    Shannon

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  40. Dear Kate,

    Your honesty is refreshing and hard-hitting.

    I just want to share with you the experience of a friend. 2 years ago her 87 yo mother moved in with her and her husband. 2 months later her husband had an horrific road traffic accident which left him a tetraplegic having to spend nearly 12 months in Stoke Mandeville trying to give him some quality of life.

    Juggling a demanding job, caring for her elderly mother and travelling backwards and forwards to the hospital she took it all in her stride, coping admirably. When he returned home she received counselling to help her come to terms with this new situation. The person she spoke to said her coping mechanisms were excellent. She organised carers for him and her mother, threw herself into her job and maintained an active social life.

    Who’d have thought she wasn’t coping? Certainly not her as she is a strong, no nonsense woman.

    Then, suddenly and unexpectedly she found herself sitting in her car one morning with tears flowing down her face. She didn’t stop crying for a week. Why? She wanted their old life back. She took a month off work. Her doctor said that she’d just been on auto-pilot for the last 2 years and was now suddenly feeling the effects of the accident, suffering from post traumatic stress.

    In her words, “We’ve lived like this for 2 years but now I’d like to go back to how things were before” – they were keen walkers and all their leisure time was spent on long distance walks.

    I just wanted to share that with you to show that you are not alone in your feelings and that the grieving process affects everyone in different but also similar ways.

    Never again shall I look at a rainy day and think I cba’d to go for a long run. You never know what life is going to through at you or what the next challenge will be so the expression carpe diem rings in my ears constantly.

    In the words of Churchill, “keep buggering on” (apologies for the language!).

    Love and hugs,

    Susie
    x

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  41. Hang in there Kate! Just think of how far you have already come and take inspiration from it. I know you will feel well again eventually.

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  42. I do feel for you about the mountain walking, but for a different reason. We moved to Norfolk 18 years ago (husbands job). I had moved a lot in my life, so I did not anticipate too many problems, but I had never lived so far from the hills before. Wherever I was, if things got depressing, I could pull on my boots and go for a good long walk up a hill. We go away for holidays and we visit friends, but it is so far and takes organising and I miss the spontaneity. Unfortunately I don’t have any suggestions . There are plenty of things to do, but none of them beats a good walk up a hill! Hopefully, as you keep going, things will gradually get better.

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  43. I love those ‘reality’ programmes where people learn things about themselves – ie wife swap etc. I know this is not a highbrow point of view, but relevant to a lot of us. A couple of years ago there was a programme about people with various disabilities going on a journey across Africa. These were people who used wheelchairs, had sight or hearing difficulties, you get the picture.
    Well, the most poignant and, I’ll admit, unexpected times in this series, was the time that each participant came to accept themselves, as they now were. Most had been struggling with wanting/needing to be ‘as they were’, living the life they’d had with all that entails, not wanting to as you cite – to give in, and fighting with the additional attribute they now had of who they were. But, it seems, when they reached that point of acceptance, realised their limitations, and new found strength and abilities, they found a form of peace for themselves. I do hope that, at some point, you will reach that stage – but surely, like anything so worthwhile, there has to be stages of progress that have to be identified, aimed for and reached?
    That black dog is such a vicious and stealthy bugger. Please, do fight it, and get some help, even if it’s medication for a period of time.
    Right, rant over. Lots of love x

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  44. Dear Kate,

    I’m so sorry that you’re going through this. I was hit with a chronic illness at age 20, which appeared overnight and changed me from an active athletic young woman into someone who could hardly lift a fork to my mouth to feed myself. Getting out of bed in the morning, feeding myself, going to physical therapy seemed like insurmountable tasks, partly because of my health, but also because the difficulty of doing these things that I’d taken for granted left me severely and constantly depressed. I also adopted a dog, who got me through those first years. I was on my own and he provided me a reason to get out of bed every morning. As with others who have commented here, I spent a lot of time knitting, which indirectly and many years later has led me to you. It was a long hard path to acceptance, and I was very fortunate to find a great psychologist who had worked with other chronically ill patients. She helped me identify ways that I could partly return to some of the activities I loved, such as by helping coordinate a local college outdoor program, a volunteer role with a lot of non-time-sensitive tasks that I could accomplish when I felt good enough to do them. It took a long time, but I learned how to budget my energy so that I could get through most days without being crippled by exhaustion, and eventually I was living a normal-enough life that most new friends I made had no idea there was anything wrong. It’s a horrible thing to have to go through a debilitating change in your health (I recovered after 8 years), and I’m very sorry that it’s happened to you. I hope you have a wonderful holiday, and that you are blessed with many moments of forgetting the stroke and enjoying whatever you’re doing at that instant.

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  45. I love reading your blog and while I can in no way understand what life is like for you now I do have some experience with depression. Sadly it seems to follow it’s own pathway and always forces you to compare up and see how much worse your life is than in the past or compared to someone else. Depression also idealises these comparisons to make you feel even worse about how things are now. You have a lot of people who love and think of you and I send you my best wishes as you continue to develop in your life.

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  46. Hi KAte

    Not sure what to say, everything I have thought of, all seems so trite. I have empathy with your situation, and I had thought only a few days ago how much better you sounded. And how much more you have accomplished. You are very inspriring to me, I have loved your blog for so long, your knitting patterns, your photography, your description of Scotland and walking. So my thoughts are with you, and remember what you are feeling is reasonable you have a right be frustrated and annoyed by your limitations. Hopefully your holiday with help the recovery Best wishes Anne

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  47. I’m sorry you have to struggle with this! Depression is a terrible beast, it clouds every good moment, every accomplishment, it pulls you down and keeps you cut off from what you love. For me, one day, I looked up and it was gone. In hindsight, I could see I’d been coming out of it for a long while, but I never noticed the change until it was over. I know that day will come for you. Until then, you have our love and support, and all the virtual hugs you can stand!

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  48. Depression is a right bastard and I can barely imagine how hard it must be to be dealing with the aftermath of the stroke as well, but you are still fighting it and you will get joys back.

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  49. the sense that time and planning and pleasure are not within your control must be very difficult.
    cognitive therapy, something like what the buddhists call “thought switching”, has specific (non psychoanalytic) techniques for ending the depressive spiral. i’m pasting here a link for a DIY cognitive therapy book which has an unfortunate title which sounds like those fatuous americans on AbFab with their latest california therapies. this is not that. it saves lives.

    http://www.amazon.com/Feeling-Good-Therapy-Revised-Updated/dp/0380810336

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  50. Someone said above that it is amazing you’re blogging and I think so too. When I was in a deep depression I began to blog as a sort of accountability to my friends that I would try to be interested in life or at least post about how much I was despairing, just so I would do _something_. What you’re facing, both emotionally and physically, is enormous. But I still see you doing _something_ and, what is more, it involves communicating with a host of people who care about and are rooting for you. We can’t change the realities of your everyday life, but, somehow, I hope we form a buoying web of support for your thoughts and moods and being.

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  51. Hey Kate
    It seems like you are going through some pretty tough stuff right now – what I would like to say to you is that in my view the one certainty in life is change – nothing ever remains the same. There is some comfort in that thought I think.

    May your holiday be wonderful and happy and thank you for allowing us to share in your journey.

    Lydia

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  52. I am so sorry to hear how you feel. I am amazed at the things you do, and not with the proviso ‘for someone who has a stroke’, I wish I had the talent to design knitting patterns and the knowledge to write articles about the history of sock knitting. You are achieving so much more than it probably feels like at the moment!

    I hope this feeling passes soon. If you look back at your posts, you’ll see that they have sounded so positive – I hope that gives you strength while you’re feeling low.

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  53. Please erase the previous version of this comment and forgive my inability to use htlm code correctly ! I wish I knew how to edit this myself.

    Dear Kate, grieving is a long and painful process, though it does help a tiny bit to know it. 6 months of black, then 6 months of half-mourning etc… victorian etiquette had something to do with this reality, if only as a way of saying to others how you were feeling at one particular stage – the post in which you mentioned how difficult it was for you to be among strangers who didn’t know about your disabilities made me think how useful such a non verbal code might still be in some situations. As you said yourself in another post, and many people have pointed out here, you are grieving, and it is hard in itself, but still harder since you are grieving for yourself, before. You are becoming another person, but must not lose that feeling of identity that does keep us sane – a very difficult balance to find.
    I don’t know if you are a Harry Potter fan ; in the Prisoner of Azkaban there is a very good allegory of depression, the Dementors, who suck every positive thought out of the prisoner’s brain. It seems rational, which makes it so very powerful and dangerous ; it is so rational it makes you overlook the fact that those vain, fatuous things that make us happy are, precisely, life itself ; our raisons de vivre need not be rational. This is what those baroque plays about life as a theater are all about : life is but an illusion – let us all play, knowing it.
    When I struggled with depression and burnout, once I got over the phase when I spent most of the day in bed inorder to recover from years of sleep deprivation, I learned to spin. It was so gratifying to be able to master a new skill, to use a beautiful tool, to actually get results and touch wool even more intimately than when knitting, and so interesting to reflect on all the metaphorical meanings associated with an activity that structured society until not so long ago, that it eventually helped me a lot to get better. Like yoga, like knitting, it is a way to focus on something precise, and let other emotions flow without overpowering you. Having to coordinate hands, eyes and brain is also extremely useful when trying to recover one’s balance. I’ve a feeling you could find a way to do it, probably with a supported spindle.
    It was spinning for me, but it could have been anything, really because, as somebody else pointed out, if you were doing something you never did yet you wouldn’t be comparing with before, and it might be a way of coming to terms with the new Kate.
    I so wish I could offer you a little more than words of help to get you through that stormy weather.

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  54. Dear Kate, grieving is a long and painful process, though it does help a tiny bit to know it. 6 months of black, then 6 months of half-mourning etc… victorian etiquette had something to do with this reality, if only as a way of saying to others how you were feeling at one particular stage – the post in which you mentioned how difficult it was for you to be among strangers who didn’t know about your disabilities made me think how useful such a non verbal code might still be in some situations. As you said yourself in another post, and many people have pointed out here, you are grieving, and it is hard in itself, but still harder since you are grieving for yourself, before. You are becoming another person, but must not lose that feeling of identity that does keep us sane – a very difficult balance to find.
    I don’t know if you are a Harry Potter fan ; in the Prisoner of Azkaban there is a very good allegory of depression, the Dementors, who suck every positive thought out of the prisoner’s brain. It seems rational, which makes it so very powerful and dangerous ; it is so rational it makes you overlook the fact that those vain, fatuous things that make us happy are, precisely, life itself ; our need not be rational. This is what those baroque plays about life as a theater are all about : life is but an illusion – let us all play, knowing it.
    When I struggled with depression and burnout, once I got over the phase when I spent most of the day in bed inorder to recover from years of sleep deprivation, I learned to spin. It was so gratifying to be able to master a new skill, to use a beautiful tool, to actually get results and touch wool even more intimately than when knitting, and so interesting to reflect on all the metaphorical meanings associated with an activity that structured society until not so long ago, that it eventually helped me a lot to get better. Like yoga, like knitting, it is a way to focus on something precise, and let other emotions flow without overpowering you. Having to coordinate hands, eyes and brain is also extremely useful when trying to recover one’s balance. I’ve a feeling you could find a way to do it, probably with a supported spindle.
    It was spinning for me, but it could have been anything, really because, as somebody else pointed out, if you were doing something you never did yet you wouldn’t be comparing with before, and it might be a way of coming to terms with the new Kate.
    I so wish I could offer you a little more than words of help to get you through that stormy weather.

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  55. I hope that your holiday brings you the pleasure you deserve and the respite you need.

    Alas, it is the case that recovery is not a smooth upwards curve, but a jagged line with the potential for huge dips – but always, I hope, a general upwards trend.

    As somebody else said, I appreciate that you write about both your good days and your bad days.

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  56. I’m sorry that you are not feeling too good just now, but you have had a lot to deal with in the past six months. You are so young to have had a stroke, though you are not the only young person I know of who has been so affected. You are so inspirational, I love your designs, and your perfectionism in your knitting, and would love to be able to make things half as good. Have a relaxing and rejuvinating holiday.

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  57. I feel there is little I can say except to ask you to continue to post both about your good days, and, the not so good.
    All of your writing is superb, and I would hate to enjoy hearing of your positive, albeit to you, small, steps forward without also understanding just how frustrating and slow the healing process is for you. Hopefully the writing in itself helps you too.
    Enjoy your hols, and one more request – where’s the boy these days? No pics recently for his fans…..

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  58. Brain injuries are so frustrating. I have lesions from an unknown cause (possibly myalgic encephalomyelitis). I am so frustrated by the way this crushing fatigue influences my ability to live my life. I have beenfully disabled for two years and still struggle with this every day.

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  59. I have no words of wisdom, just a note that I thought of you when I re-watched the Global Shim Sham video. Hadn’t found your blog yet when I first watched this, but this time ’round I thought “Hey! Kate’s walked some of the hills in this video!”. And it always brings a smile to my face. :)

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  60. This was such an incredibly moving, emotional post. It reminded me not of the life-threatening illness that I had as a teenager, but of my years as a child growing up in a very dysfunctional household. I knew I had no control over my parents’ marriage, or their moods, or their quarrels, but that never stopped me from wanting it to be better, to be what I knew was “normal,” or from feeling shattered every time things were bad. But you just can’t stop trying, and you have to have to have to take happiness wherever you find it…even if it’s not where it used to be, or should have been.

    I’m sorry. I really feel your pain. Hugs.

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  61. It is very hard to accept that the life you have now isn’t the life you expected to have. It is bound to be so much more frustrating for a busy talented person like you, because there is a much bigger contrast in your two lives. I finally realised that I had accepted the devastating change to my life when I started to appear in my dreams as I am now, not as I was then. Enjoy your holiday, rest your body and your brain ….. read some chicklit and guess the denoument before the end of the first page (a clue, if she hates him at first sight she will be having rampant s*x with him by the end of the book) love, Anne

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  62. Hello Kate,
    I’ve read your musings on your struggles with your health and feel a lot of compassion for you. I’ve been/am there (I have a longterm illness that began after a sudden trauma), and know what a lonely and difficult road it can be.
    When– after almost a year– I began to emerge from the darkest part of my illness, I felt like Persephone returning from the Underworld, wearing the dark veil, a symbol of having consummated her liaison with Hades. Those of us who live with longterm illnesses wear such dark veils. Our old selves are still insid us, wanting to bust out, but our bodies slap us down. It’s so hard!
    One thing that has helped me is to magnify the small things, meaning that although I can’t do so many things now, the small things I CAN do can be expanded with meaning. I know this sounds vague, but perhaps you know what I mean.
    I have a friend who had a near-fatal stroke, and now, almost 2 years later, he’s just about as good as new. It took him a long time to recover, and he felt weak and dizzy and disoriented for many many months, but eventually he did.
    It’s a sucky waiting game, but you’ll get there.

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  63. Kate, thank you for sharing this. I hope it helps to just put it out there and receive back good vibes from people all around the world, who you may or may not know. I am the latter, but I still wish you strength of the emotional and physical kind.

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  64. Massive Love, and a cheering video from Kimya Dawson with quality crayon drawings. It features rubbish youtube sound-quality, so you might want to turn the volume down a bit:

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  65. I developed a chronic illness at 28 and spent the next 3 years coming to terms with it, I’m now 6 years down the line and your words bring those early days back to me so vividly. I won’t bore you with the details but essentially my head was fine and I was stuck with a body that didn’t work.
    Even as the symptoms improved I struggled to come to terms with what had happened, I fought it and everything involving it, at the same time I had incredibly bleak days when I couldn’t see a way out and all I wanted was to not be me anymore, to not have to battle with my body just to perform daily functions.
    Its only now that I look back that I can appreciate what I went through and that it took those two sides of me to get through it.
    I know firsthand how frustrating and downright shitty a time you are having but it will get better and with every little improvement you will see a little less of the bleak side.

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    1. What are you saying, six months, a sprained ankle you can get over in six months a pulled hamstring, maybe, a stroke not so much. You will come round right but it will take longer. you have been thru a very rough time, heartbreak can take two years, actual injured heart might take at least that. You are determined, powerfull and a very tough cookie, give yourself a pat on the back, I could not possibly have accomplished what you have in six months.

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  66. I do hope your holiday helps lift your spirits but I can’t imagine the difficulties you are facing right now.

    I had my own struggle with depression after a knee injury in 2005. I was studying abroad in New Zealand (far from family, friends and my dog). Like you I use exercise and especially running to combat stress, anxiety and black moods. Within a couple of months of my arrival I had run/biked/hiked myself into an overuse injury of my knee. Luckily I caught it before I required surgery and instead required 6-10 months of complete rest. I was cautioned that I should not even walk far on it.

    This situation quickly led me into a downward spiral as I added weight gain, low energy and general dumpiness to an already stressful situation of living and going to school halfway round the world.

    This is when I took up knitting in earnest. It’s not the same as running or playing outside but it did help me.

    It took 6 years before I could run regularly without pain. I know what it’s like to be forbidden by your own body to engage in what you love to do. It is hard. I re-injured my knee several times trying to rebuild the strength that I had lost during my recovery. Each time requiring weeks of rest. I still have the occasional bad day and have had to learn what kinds of knee pain call for rest days and what kinds are okay to run through.

    It’s not at all the same as what you are going through but maybe it helps to hear a similar story. My only suggestion being of course patience and persistence and trying to find other outlets for your emotions (like knitting).

    I think of you often and wish there was something I could do to help.

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  67. A note to echo the comments that reaching some level of acceptance – hard as that is – does not mean you will stop fighting to get to a better place. That said, I don’t really know how to achieve that acceptance (although I see many words of wisdom in the previous posts.)
    My experience is with cancer and although I have now, for the most part, regained my level of physical vitality, the knowledge of having been on one path, being picked up whole & plunked down on a parallel path, stays with me. I can see the other path, but I can’t get back. My life has been forever changed.
    But at this point it isn’t necessarily worse, it’s different, and it’s more full and rich than that of many of my friends. I still remember the feeling of utter joy and the tears that flowed when I first was able to run again: who knew that 1 minute run, 4 minute walk could render me a blubbering fool! I believe that those euphoric moments slowly add to each other over time and drag you to a brighter place. That is my wish for you.

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  68. Your experience of a stroke is different but the recovery process is very similar to my continuing recovery from a runner VS van accident in 2005. I can tell you that progress after injury is slow for all of us and full of peaks and valleys. It is difficult and sometimes terribly painful work. I can also tell you that the joy of the good days will grow more powerful and poignant and the good days will come more and more often as long as you continue your efforts, listen to your body, have patience with yourself, and soak in the love and caring of all those around you physically and here in cyberspace. If you look at my blog, you can see my triumphs and dark days too. It is good to be honest – sometimes it’s really lousy and a pity party and rest are in order! Then put it aside and move on and do what you can! 5 years and 3 months after the accident, we went to Glacier National Park and hiked 37 miles in 4 days – through snow, beautiful wildflower fields, mud and glorious trails. We went from 3,300 feet to an elevation of 7,250 and back down again. My once severely fractured ankle (3 rods and assorted screws) handled it well with the help of sturdy hiking boots and it was a joyous celebration of life! I even sent a postcard to the surgeon who rebuilt the ankle! Like you, I have many lost things. I certainly can’t run anymore and go easy on the ankle as I can to prolong it’s life. Some things that gave me enormous joy I can no longer do and my career is very different now, but LIFE and being useful have become profound joys. Every day, some part or parts of me hurt and some days I still cry and wish for the past. “Accepting it” and leaving it behind” are folly. We loved those things and parts of us because they were great and we should bring out those memories and treasure them. BUT, now we must move ahead to new joys, new experiences and new memories.

    You have so much and you give so much. You are doing great and I send my cheers and very best thoughts! Hang in there. It will keep getting better and the past horrors will get dimmer and dimmer.

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  69. For selfish reasons, I’m incredibly grateful that the stroke didn’t take away your ability to communicate, or to analyze the world around you. From the perspective of a blog reader (who only sees what you choose to show) you are doing very well. I remember when you first started your hills project you did one and then seemed to abandon the project because it was too much for you. Seeing you post about further hills you have climbed recently (and seeing them all go up within what seems like a small amount of time) makes it seem that you are dong much better and building stamina. Seeing you post FOs and talk about your knitting designs, when at one point you could barely braid yarn seems to me incredible.

    Depression (as you described it) isn’t reality. It’s a distortion… with the bad amplified and the good things about your life receding into insignificance. I know the internal voices that push driven, active people to always be doing more, to never be entirely satisfied with what we are capable of RIGHT NOW. And I know that 6 months of fighting to get back what once seemed normal is hard. From where I sit, however, you have made amazing progress and have taken the time to bring all of your blog readers along with you. Thank you.

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  70. ::hugs::

    I’m not sure I have anything helpful to say that hasn’t already been said, but I just wanted to let you know how powerfully everything in this post struck me…everything you describe aligns so much with what I’ve been experiencing as a result of a different (but also life-changing) chronic ailment. Losing the normal coping mechanisms (I used to be a marathoner, now can no longer run at all), losing the freedom to plan ahead or do things on a whim without the fear of waking up the next morning with unshakable fatigue, feeling like I’ve been run over by a truck in the night. And the feeling that depression, as lousy as it is, really does seem rational given the circumstances…it’s a rough road, and like you, I’m not sure what it would mean to “come to terms” with the new reality without feeling like I’ve given up. It’s so, so hard, and I don’t know what else to say about it other than to offer a sympathetic ear.

    I hope your holiday does wonders for you!

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  71. hang in there, dude.

    i am trying to heal from a much (MUCH) less serious injury and finding myself feeling a similar way. it’s just damn depressing not to have back the things i thought i would at this point and i feel like i’ve been climbing uphill much too long.

    but it WILL come. not in the time you or I want it to, of course. that would be silly! preposterous! miraculous! but it will. on its own bloody (berloody?) sweet slow-ass time.

    just do the best you can! :)

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  72. It is so important that you write this down, put it on paper, get it out there. The social expectation of “recovery” can weigh so heavily. I can only relate it to my husband’s experience of cancer – people see him one day up and about, golfing even, and then don’t understand when he spends the next day fast asleep in his chair, barely able to string two words together. It’s how it is. And I don’t imagine anyone ever comes to terms with their “new” body’s uncertain rhythms, that have no pattern, and have to be obeyed. One day at a time. Enjoy the things that bring you joy. And allow yourself some “downtime” too. You’re doing just fine.

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  73. I was just going to point you to The Spoon Theory as well!

    I too thought that acceptance was the same as giving up. It isn’t, truly. It took me a long time to see it, but acceptance is very much part of moving forward, and it is a very positive thing. It is saying – ok, here I am, I am like this for the time being. That doesn’t mean that I can’t improve, but even if it turns out that I stay like this, then that’s still ok.

    The small joyful things are the things that matter. I do hope that tomorrow feels brighter for you.

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  74. Kate, have you read The Spoon Theory? It is sort of a ridiculous way of explaining limited physical and mental resources to someone who doesn’t have to worry about planning out their every move. Someone sent me it about a year after I had hobbled myself (with a bad injury) and it was a great help for figuring out what it meant for me that regular everyday things I had done before were suddenly exhausting and I couldn’t do everything, or anything on some days.

    The upshot is that if you think of tasks in terms of the energy they’re going to consume, and not in terms of their magnitude, you can divide your day into energy units and make a realistic plan about what you’ll be able to do. I felt very, very stupid initially (for, oh, the first many months of being lame and slow) about not being able to do laundry AND dishes on the same day. But you have to make adjustments, right, and it is utterly imperative that you be kind to yourself.

    Wish I could bring you a cup of tea and some companionable quiet.

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  75. Thank you for showing me an inside view of having gone through a stroke; my dad suffered one several years ago and it was hard to understand what he was going through. It was slow progress for him but he did regain a lot of his strength and balance and energy. I can fully understand depression and how it can really make sense; it’s not something you can just snap out of, is it? I’ve had it for years and manage fine but it can be overwhelming sometimes. Good luck with your recovery!!

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  76. What a beast the melancholy can be– and when we spend a lifetime figuring out how to outwit it and then the strategies are no longer possible–well that sucks. Faking it sometimes helps. Your posts indicate that you do that pretty well, enough to fool us, if not yourself. “Coming to terms” with something sounds like a truce made at the end of a battle and it sound like you’re still in the midst of it. My only bit of advice: even if you can’t exercise outside, just being outside helps. A reclining lawn chair, some tea in a thermos, knitting (or not) can do wonders for me.
    Oh yeah, and if you can’t see recovery, celebrate every little bit of progress.

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  77. Kate, I couldn’t think how to say what I was thinking concerning acceptance but Reed said it for me.

    As to the jabbering crowd…You told us some time back about having to retrain your body to do familiar tasks – even down to how the arm should swing while walking. Could you use that technique to relearn how to filter individual conversations from crowd noise? Starting with a crowd of two others and building up gradually?

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  78. I recognise your anger because I felt all of that in a bereavement context. The grief was all consuming and changed my life. I couldn’t go back to the person I was before and so I had to find a way to live with the person that I had become. I did … enventually …but I am not going to pretend that it was easy or that it happened quickly. Courage is what you need and you have that by the bucket load.

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  79. Daily living limitations are frustrating, and losing the freedom to do what you want even more so, and you have (as always) expressed it quite eloquently. Being inside and looking out makes it much darker at times than being on the outside looking in. Not being able to exercise away the depression is not fun either – I’ve gone on long runs to get out of the funk. Not being able to do that any more forced me to look at other activities, because the lack of physical release created ugly moments of anger. The elliptical helps me a lot. But, with one side acting up, that is not always an option.

    Have you considered hitting golf balls? You can stand, your good arm can control the swing, and the other can go along for the ride. There are some phenomenal one-armed golfers out there! So, maybe become a one-armed golfer with two arms? Why not try it?

    For me, it has helped in many ways. One, it is physical activity. Two, I get outdoors. Three, I get to work off steam. Four, some fine coordination comes into muscles long-ago damaged. Five, it is not intellectual, but moves into the physical-spiritual experience of being one with one’s body, no matter what happens. Six, I have gained some strength and skills I never have had before.

    Then, get out on the golf course. Take an electric cart if you need to (I’m in the US – no idea what they have on Scottish ones!), and a good bag with wheels to prevent overtiring yourself. Many courses are beautiful and that can be soothing. Get out at first tee before the weather and crowds overwhelm you. Early morning is so beautiful.

    I know I look like a dork out on the course, but I don’t care – I cannot afford to care. I just go to a local 9-hole course where par is not more than 3 for any hole. I go with one or two friends – none of us in any good – and we go just to go. To do. I get tired, I get annoyed with my limitations, and accept it as inevitable. But, the fact I did it, the fact I did not give in, and kept moving on reminds me of the fact that, despite limitations, anger, rage, frustration, feeling like a victim, I still make choices, I adapt, I continue.

    I ain’t dead yet, mentally or physically, and that is it at its most elemental level. In my most depressed moments, I remind myself of this – grim reality, eh? – but it usually works. Sometimes I really up the self-pity, and then it makes me laugh as it is so funny (to me). This is what is, and that is that. Sometimes there are more limitations, sometimes there are less.

    Whether or not this has any value, I don’t know. What I do hope to convey is that you are not alone – and that sense of isolation, of aloneness, can be the most devastating part of a physical impairment. Your spirit always comes through, and you are a lovely light in a dark area which too many are afraid to explore.

    Enjoy your vacation!

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  80. I’m impressed every time I come here with your fight to recover from the stroke and your beautiful writing describing it. I know that I cannot imagine how difficult, frustrating, and depressing your fight has been. But I do see the things that you are doing now are vastly improved over what you were doing before. Your victories, though they might seem small to you, have been getting so much bigger every time, and I’m sure that they will continue to do so. My thoughts are with you, and I wish I could give you some positive energy to go with it. Take care.

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  81. Yeah, sometimes we readers forget that you are not “back to normal” or “cured”. That is the difference between knowing you and just reading what you write. Why not go easy on yourself? You seem to put a lot of pressure on yourself. It is nice to have goals and we do live in a goal-oriented society, but maybe you need to let yourself explore your new capabilities a bit, rather than setting off on your old path again. This idea that there is no clear place to move to is probably true, but not necessarily negative.

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  82. Some years ago I was walking along the pavement on the way home from seeing the History Boys at the National Theatre and I got hit by a car coming from behind which had lost control. It is the first time that I had truely understood the phrase ‘I didn’t know what had hit me’. It got me to thinking about phrases that we use all the time without really thinking what they mean. One of those overused phrases is ‘Life changing experience’. Just wanted to say that that is clearly what you have had.

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  83. I am so sorry that you have hit a down spot. Unfortunately I have to agree with Virginia when she says “Enjoy every small thing that you can. And the few big things that are the most important. It sounds harsh, but what helps me is remembering that there are no guarantees, we should take nothing for granted, and be grateful for every good moment we have. Doesn’t help much with the grief and sadness and unfairness of life, but it helps with perspective a bit.”

    I can’t truly understand your feelings due to the stroke but I go through some of the same things dealing with fibromyalgia. The hardest adjustment is saying that this is your life now, it might get better in the future but it is not what it was. The stages of grief and mourning might be something to look up as what you are going through right now is mourning for your left behind life. There is a lot of anger and depression when in mourning and that is perfectly acceptable. Focus on the good times, it does make it easier…I know easier said than done. And it doesn’t help for all of us to look at what you have in your life – a good husband, dog, house, ability to design and knit so wonderfully – you have to cherish what you have and learn to let go (at least a little) of what you can’t/don’t have.

    Good luck with the journey and enjoy your vacation.

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  84. Kate I had cancer and from the begining I always pictured the day when it would be over.
    That day came.
    Best wishes for your day to come

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  85. “Acceptance is not submission; it is acknowledgement of the facts of a situation. Then deciding what you’re going to do about it.” Kathleen Casey Theisen

    A big {hug} for you.

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  86. thanks, as always, for sharing. i have found your blog to be a constant enjoyment and your views give me new perspectives on many things. thank you for your honesty and trust. i hope the holiday is restorative and you have a lovely time of it.

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  87. There is no wisdom I can share with you to help you. Who is this woman from Canada, anyway? I know that loss is constant as we grow older. Huge or little, it gets us once past thirty I think. Mourning the Kate you were six months ago, and not knowing just how the Kate you are will be six months from now. Not knowing.
    While I knit brightly coloured dishcloths in front of the tv, no owls or lovely yarn here yet, I read your words and feel inspired.
    I wish for you a wonderful vacation and some opportunity to recharge with your loved ones, soaking up the healing energy of nature.
    Lois from Ontario, knitting round dishcloths now at least.

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  88. Kate, thank you for your honest and well-written post. There are so many ways that disability is constructed, and that’s hard and infuriating. I also know that a new disability (even when it’s expected to be temporary) can be particularly hard on folks who, like yourself, are used to managing stress with much more physical activity.

    This is not meant to be advice, only a possibility: but when you can’t move your own energy sufficiently, you might consider acupuncture (or even something like shiatsu), which of course is all about moving stuck energy. I don’t mean in any way to suggest that getting stuck with pins is anything like a long hike. And while acupuncture is frequently touted for post-stroke recovery, I wouldn’t even advise going in for it with that in mind per se. I’m just talking about considering trying it out as a means of taking the edge off the stress and depression. I’m a member of the Community Acupuncture Network in the US and we have a kindred organization in the UK, ACMAC; I just emailed the director to see if she had any referrals for affordable acupuncture in your area and she replied that she keeps waiting for a clinic to open in Scotland, but none so far. She says if you can afford it at the going rates, the British Acupuncture Council is the place to go for a referral (and here’s ACMAC’s info, if you are at all interested: http://www.acmac.net/). My thought was that, besides being more affordable, the folks at the multibed clinics are less likely to browbeat you with “lifestyle advice”, which I think other acupunks are more likely to do to justify their high rates (at least that seems to be a phenomenon in the US, the UK acu-culture might be different).

    Hm, I did not mean this to become all about community acupuncture so feel free to remove, and I promise not to give this “advice” again–just wanted to put it out there this once. Anyway, big hugs to you–I also have a tendency to depression and know how reasonable its voice sounds but how much it actually really sucks.

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    1. Just an update: got word from the ACMAC folks that a community-type acupuncture clinic is just opening in Edinburgh. If you are ever interested in checking them out the contact person is Charmaine and her contact email is charmaine@acuhealthuk.com. And I swear that’s the last I’ll talk about that *other* way of being needled.

      Also the fixed bike thing is brilliant and cheering. Allez, indeed!

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    2. (please ignore if this is duplicate information; I commented under profscout awhile ago, by accident – borrowing my wife’s computer).
      Just wanted to update with the news that an ACMAC member (community type) acupuncture clinic is about to open in Edinburgh. If you are ever interested in checking them out, the contact person is Charmaine and her email is charmaine@acuhealthuk.com. And I *swear* that’s the last time I’ll mention that *other* way of being “needled.”

      The fixed bike thing is excellent and cheering. Allez, indeed!

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  89. I’m so, so sorry for your pain and frustration. I cannot imagine what you are going through, despite your very articulate descriptions, but I can offer my sympathy (which is NOT pity) for your continued struggle. Hope your holiday helps and you are able to enjoy it. Sending good thoughts your way.

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  90. I am so sorry that you have to deal with it at all! I think it is terrible … but you seem (from the outside world) to be making the best of the hand you have been given … which is impressive and keeps me inspired!

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  91. Depression sucks. ‘Coming to terms’ with what life throws at you, in my opinion is the opposite of giving up. The way it sounds is negative, really ought to be some better way to say the same thing, but learning to work around what we get thrown is how we survive. Anyways, all this to say hang in there, good thoughts coming your way.

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  92. Just found your wonderful patterns and will knit a few for my daughters while wishing you recover.

    Enforced sitting still to you must seem hellish, and not doing the things you’d usually be doing seems like something has been taken from you, how about turning this around and doing something new everyday you wouldn’t have done as the previous you? Such as the crossword, bird watching (once you get the binoculars out you’d be surprised at what you see), mental arithmetic, learn a language by listening, do yoga
    from you tube, do the history research of your street.

    These are sent with love and from someone who also loves the hills and rock, knitting,running and the archers.

    Try and see your stroke as something visual like a scab on your knee and it’s slowly mending, rather than being a complete mystery doing it’s own thing. Endorphins are
    great healers which is why the sea air is a great recovery, find a beautiful spot and
    breath in the sea breeze, the Scottish coast are good for this!!!

    Waiting to read your updates good or bad

    Xxxxxxxx

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  93. I so admire your honesty and clarity, and I believe that your indomitable spirit will prevail. I wish you a beautiful holiday. Know that so many people are pulling for you and grateful for all the beauty that you bring to this planet.

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  94. kate, i have no advice for you, but i wish you well. i hope your holiday helps your mood and offers healing in some form.

    for what it’s worth, i am so happy i have found your blog and been able to enjoy your writing and your work. thank.you.

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  95. I remember reading a book that described depression as a “black angel”. “Black”, obviously, in the sense of dark and intense, and “angel” in that it bears a certain type of mystical gift – one not easily identified. I have grappled with this angel more than once and for sustained periods of time. I have profound respect for it. I also admit to a healthy fear of it because of its intensity. Take heart – you’re not alone, you’re much loved and “lighter days” are on the horizon.

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  96. I have an emotional condition that is long standing and on occassion debilitating. Acceptance of it has not meant “giving in” but it has stopped me beating myself up over it. I’ve learned that I can’t control everything that I feel or am able to do, but that I can just shelter in place until the debilitation subsides. This acceptance has removed the depressions that I used to suffer.

    Hugs, to you Kate.

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  97. Comparison and expectations kill but are unavoidable. It is not a sin and it is not a fault to wish that things are as they used to be.

    Facing something totally new could, however, help. No comparison with a better past; just something you could *not* do before and that you can do now (or will be able to do in a short time). Nothing exceptional, just a little different. Different enough to avoid comparison. So, for instance, rather than going for a walk, you could sometimes go to the swimming-pool (if this is something you are not used to do). Or try some yoga. Learn Japanese or Russian, anything you have to do (almost) from scratch. The feeling of growing is important.

    I bought your owls and I read your blog since a few days before you had the stroke. I do not know how you were before but you made me discover many things and I know you have a great potential. I wish you all the best.

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  98. Enjoy every small thing that you can. And the few big things that are the most important. It sounds harsh, but what helps me is remembering that there are no guarantees, we should take nothing for granted, and be grateful for every good moment we have. Doesn’t help much with the grief and sadness and unfairness of life, but it helps with perspective a bit.
    Sending good thoughts and hugs and hoping you have a good holiday. Give Bruce a kiss from me.

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  99. I admire you more with every post!! A lot of hugs are winging there way to you!!

    Hope your vacation is restful and refreshing.

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  100. School is starting here and preparing for the students has had me thinking of you, often considering the enormous challenges you must still be facing. Your post made my heart hurt, my throat tighten and eyes well up with tears. I’m sad and angry for you and I wish the human body would recover faster. I suspect that I have no advice worth hearing but I will say what you already know (thank heavens!) – there is no formula. It (everything) is different every single time. Perhaps you have not “come to terms.” Perhaps you are coming to terms, your terms. Those terms will keep evolving and changing, just like your body is. Keep moving, thinking, writing, talking, knitting, walking, hiking, climbing, and loving. Do it when you can. Stop when you have to. Wishing you all the best from Philly and thinking of you often.

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  101. Six months. I can relate to six months. It’s long enough to not be knew and get sometime not long enough that you don’t remember the ease and freedom of before. While not remotely the same, it’s six months since I moved to a country where I didn’t speak the language. Oh the frustration! The slowness of trying to communicate, the isolation that I feel due to a lack of being able to just have a casual chat with the supermarket chick or the postie. And this is supposed to be a wonderful and fantastic opportunity and a chance to learn another language. Not even close to the frustrations and challenges of post-stroke recovery. But I emphathise. And Pien is right – you/me can still do things; talk, love, sew, walk (a bit) and hopefully go on a wonderful holiday.

    Also, apparently if you smile first your brain sometimes feels better – behaviour influencing neurons and not visa versa. Always worth a try.

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  102. Thank you once again for sharing your journey. You write so beautifully. Depression is an evil beast and the brain still so much of a mystery. May your holiday bring you some of what you need right now.

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  103. As ‘Scamp’ above says- no sage advice. Rethinking our lives when we don’t want to or aren’t ready to would seem like anathema to anyone. There are only so many ways of retaining our independence and individuality, and although slippage may have occurred to the former, you seem to have held very firmly onto the latter. Maybe by holding fast to those things you hold most dear, you will be able to find the strength to get through these dark periods, and that they diminish in strength and frequency. I sincerely hope so as you are a remarkable person. With very best wishes.

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  104. my english isnt good enough to tell yo what i would say.
    i do understand a lot of what you are writing though..
    being a eyoore-kinda-person, depressions are not strange to me.
    but hey, being a life, and kicking ;), doing things, some things, not everything one would like to do, having a loved one, able to make or design anything, gong on holiday, knit, walk, sew, draw, love and eat and feel, and so on, life is still good.
    wishing you all the best

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  105. I absolutely HATE this for you! I also feel that it is more than generous of you to tell us the truth and am hoping that “putting it out there” can somehow lessen the hardness of it. Being a trouper and a good sport is likely good exercise, but acknowledging the difficulty seems very important as you move forward.

    Sending warm love.

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  106. Whew! Tough. Very tough. Interesting to share such stuff with a world of mostly (just wrote “motley” heh heh) strangers. I’m new to your world, but for all your pain it seems lovely here at your blog, because you make it so. Thank you. My stranger’s thoughts and (atheist) prayers to you.
    Loani

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  107. And yet despite all this you’re still writing your blog – takes a lot of courage that. I think there is quite a lot of grieving for the old self with a long term illness, and it can be very hard to deal with. Hopefully the blackness will be intermittent.

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  108. Coming to terms in my mind, Kate, is not about giving in, but accepting day by day, hour by hour, and yes, even minute by minute the ‘what is’. On most days–judging from your posts–you are doing an incredible job of this, grabbing the joy when and where you can, and succeeding in tasks most of us would fall flat on our faces trying to do. I am not discounting the depression; I took twelve step backwards in that regard just day before yesterday, and the frustration I felt at that feeling and not being able to escape it is still fresh. No sage advice from me–just lots of love and virtual hugs and positive energy winging its way to you!

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  109. This is a very honest account of your recovery process, indeed. I don’t know what to say, I’ve never had to deal with anything like this. I know this is not going to help, but can I send you a big hug through the internet anyway?

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  110. Thanks for sharing with us. I for one am wishing you well on your road to recovery – a long and arduous road it seems.
    I hope your time away lifts your spirits.

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  111. Thank you for this posting. My mother-in-law had a major stroke, so I know how very difficult it is to recover and retool how one’s brain and body functions.

    Your comments about how you hear I found very interesting. Our son, now a teen, was born with auditory processing disorder, something very similar to what you are describing. Basically, he experienced all sounds around him as having equal value — often making a busy environment a confusing and frightening place, often where it was impossible to discern what someone was saying. He required a lot of therapy as a very young child in order to sort out the pieces of language and to understand what we were saying and to speak. He still struggles at times to hear in a busy place.

    It occurs to me that some of the language and hearing therapies for APD might help you. There is a lot of information about it online. You may have found it already, but I thought I would let you know in case you had not.

    Best wishes to you — especially for more “good days” and fewer of the bleaker ones.

    Anne

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  112. I’m so sorry that things are so hard. Your last few knitting and walking posts have given such a great sense of ‘back to normal’–but what must be so very tough is the knowledge that ‘normal’ for you is not going to be like it was before. I’m sure I would feel really ground down by that. Sending warm thoughts through cyberspace …

    I hope you have a wonderful holiday, and that it does, indeed, lift your spirits.

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