This is a post for my own benefit, to remind myself about how I’ve been managing this week.

Last Saturday I went to a Christmas ‘party’. This is the first event of this nature I’ve attended since my stroke. Why so? Well, at a party, one must generally stand up in a space of limited dimensions, carry a glass or plate in one’s hands, and hold a conversation. Performing just one of these activities is hard enough for me now, and doing all three simultaneously is very difficult. This is why it has taken me almost two years to accept an invitation to a party at someone’s home, and I have to say that I will have to think very hard about accepting another. I did not enjoy myself. As you might imagine for someone whose left side is much weaker than her right, I am now hyper-aware of being unbalanced, and appearing physically clumsy. The normal bodily proximity of these occasions is a source of real horror for me, and last Saturday, every time I had to step out of someone’s way I was reminded of my disability. I tried to avoid being bumped into by sitting down, but it is difficult to hold any sort of conversation from a seated position in a room where everyone else is standing. Not for the first time, I reflected on one of the basic sensations that wheelchair users must deal with every single day — the feeling of being talked down to. While I am capable of standing up if I need to speak to someone, my own feelings of exclusion were exacerbated by the fact that I couldn’t hear a fookin thing. The party was largely composed of academics, and it was by no means a rowdy occasion, but I found it pretty impossible to pick out either my own voice, or that of the person I was talking to over the accompanying 60s soundtrack and the low hum of other people talking. I managed about 90 minutes of this hell before my brain decided it had had enough. It really was as if something switched off and turned me into a neurological Cinderella: suddenly, my leg refused to work properly, my eyes and ears suffered a sort of sensory overload and I had to go and sit like a post-stroke zombie in a quiet room, then get Tom to take me home. It took a good half hour after I had left before I could think clearly enough again to be able to string a sentence together.

The whole experience was rather disheartening. It really made me think about how normal social activities – a gathering of a few people in a room – can really pose an insurmountable hurdle for those of us with brain injuries and a whole host of other neurological conditions. In my own case, it was the kind of noise that made things very difficult for me: if there had been more space, and less music, my brain would have found it easier to focus on the ‘foreground’ of the conversation I was trying to conduct, without becoming befuddled by the ‘background’ hubbub. I was fine, for example, at a reception I attended recently at the Shetland Museum which was held in a large airy space with sharp acoustics and no background noise.

Anyway, I had picked myself up enough the following day to go for a walk in the Highlands, which I always find restorative. On Monday I felt well enough to attempt another first: managing two cities at commuting time. I traveled on a train to Glasgow, got a bus out to the University, and attended a meeting about an interesting knitterly project with which I hope to be involved (more of which later). The company was stimulating, the meeting was interesting, the transport was crowded, and both Edinburgh and Glasgow had that insane, festive, locusty feel they get at this time of year, but I managed it without a stick, carrying a bag, and in ‘normal’ shoes. I returned home tired but pleased. This was definitely a step forward.

On Tuesday and Wednesday I tried to “pace” myself as I generally have to do after a busy few days, but on Thursday I had a seizure. This one began in quite a disturbing way, as I woke in the morning with a feeling of intense terror, opened my eyes and then found that I couldn’t see. This combined ‘aura’ of an adrenalin rush together with visual disturbances / blindness is quite characteristic for me, and I am actually much less nervous than I used to be about these events (which my neurologist reckons are on the borderline between migraine and epilepsy) but it was still bloody annoying. Anyone who suffers with these sorts of things things will tell you that they leave you feeling like a brick has been thrown at your head. I couldn’t get out of bed, and Tom had to restructure his day around taking Bruce out, along with the other routine activities that I usually manage.

The days after a seizure are usually quite difficult for me, as they always involve fatigue. I’ve been thinking about how I would describe this neurological fatigue to someone who hasn’t experienced it, and I would say that it is very like the feeling of overwhelming malaise you have when suffering from flu. Added to this, the world seems to recede behind a fog, and all of my post-stroke symptoms become worse: my leg is more wonky, my hearing more unreliable, I begin to have trouble finding words. It is not easy to just get on with things when one is feeling like this.

A couple of months ago, I would have probably have put everything on hold and spent a few more days resting until I was feeling properly better. But I have had the sense recently that it might be more important to struggle through the fatigue and feel a bit shit than not do anything and feel even shittier. So on Friday, despite feeling pretty rotten, I managed to spend a few hours with Mel photographing her sweater in the Botanic gardens, and then yesterday I joined Mel and my other knitting buddies Sarah, Bex, Ysolda and Gudrun at Sarah’s house for a lovely festive gathering. Yesterday evening I felt like my head had been run over by a tank, and I had to sleep for a good twelve hours to recover, but not only had I managed it, I had had a good time.

Looking back on this week, I would say that I ‘overdid’ things at the beginning, and that this was at least partly responsible for the fact that I had a seizure come Thursday. I should definitely have paced things better: I could have managed the party, or the Glasgow trip, or the highland walk, but not all three on consecutive days. On reflection, I’d say that the walk and the meeting were worth it. The party, on the other hand, was not. What I’ve learned this week is that there are some things that are definitely worth feeling crap for, and some things that simply aren’t. I will think very carefully before going to a party again; there doesn’t seem much point to me in struggling to hear and stand in a room full of people I don’t know very well, and then coming home with feelings of social inadequacy to add to everything else. On the other hand, it is definitely worth spending time with one’s friends, among whom one feels comfortable, whose company is enjoyable, and who do not really care if one behaves like a zombie or not.

So thanks for yesterday, ladies, and particularly thanks to Sarah for the tasty food and roaring fire. It was lovely to see you all again.

103 thoughts on “managing

  1. Hello! Just passing…. I admire your honesty in this post and I imagine when writing it all down it helped you to come to an honest conclusion about what is best for you and what is not. Whatever 2012 holds for you I hope it is healthy and happy.

    All the best,

    Bella Bheag

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  2. Very wise words, even if one hasn’t had a stroke. I think so often I do things that I don’t really enjoy for the most stupid reasons. Thanks for reminding me about priorities!

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  3. I’m sorry that you had such a rough week, though it’s pretty awesome that you made it through a gathering of knitterly friends and felt a little brighter toward the end there. I am also in the You’re-Not-Alone camp; I get chronic migraines with extreme sensory overload, and I’m married to a social butterfly (who is, thankfully, very understanding). So hang in there! I wish you many Bruce and Jesus snuggles — unless Jesus is not the snuggly type. And then I wish you many moments of Jesus staring you down, willing you to drop whatever food you’re holding so that he can finally have a sniff at it.

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  4. Once again on reading your post, I am struck by your bravery, determination, and your adaptability. Thank you so much for being open and honest enough to share your experiences – it is a source of strength to me, resonating with my own health problems – and clearly to many others.

    Wishing you a very happy, healthy, fun and restful Christmas, with plenty of knitting.

    Laura x

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  5. I haven’t had a stroke, but have had a brain tumor removed from my cerebellum — the balance and muscle coordination center of the brain. I am disabled now: I can walk only very short distances with a wheeled walker, have chronic vertigo and pain in my skull, cannot talk and walk simultaneously, and in short I find the most mundane and seemingly simple tasks utterly taxing, impossible in many cases. I so appreciate what you write here, so much of it is very familiar to me. I cannot fathom attending a party now! Thank you for writing.

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  6. You are my new favorite blog. My mother is a stroke survivor, like you. I appreciate the way you articulate the challenges of being among crowds and in situations which are now difficult. You do us all a favor by sharing your experience. Thank you for putting into words something most of us could hardly guess at.
    I also love your blog because I am an addicted knitter. Your patterns are just lovely. Thanks

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  7. What never fails to amaze me in your post-stroke chronicles is how damn articulate they are. When neurological fatigue strikes me, I simply cannot find the mental energy or coherence to write about it, even while it is the one thing I most want to write about. So your record is enormously valuable to those of us who share some common ground and who wish we were able to explain it to the rest of the world.

    Incidentally, my neurologist gave me a bit of a lecture a couple of months ago about pacing myself. His ‘permission’ has helped me to be more assertive in turning down invitations that I know are going to be a trial, and saving my energies for things I really want to do. That party which you describe would have been my idea of hell too: noise overload is something I still find very difficult, and I’ve experienced that ‘brain shut-down’, albeit with different symptoms. People look at you like you’re an idiot while you stand there with all the gears jammed, unable to say a word. Then the payback next day: too exhausted to be able to form sentences, head feeling like it’s being sawed into bits.

    Not meant to be a moan here: I really just wanted to express my sympathies, to say a big thank you for your continuing with the chronicling of your progress, and in passing also to say that you still seem to get more done in a week than most of us do in several months!

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  8. kate, this was very honest, in fact, i relish reading how you experience and cope with things, then analyze them. your honesty as you navigate your life through recovery has been brave and i think very important. i don’t know if this is your intent, but i am sure you could add enormously to the literature on post-stroke living as a memoir. in any case, your writing rings with clarity and a strength of spirit.

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  9. What a wonderful post, Kate. It is inspirational to have you share the challenges of your experience. And the photos that accompanied the words!! They were the most telling juxtaposition for me. Your spirit shines through in both components!!

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  10. I love the photographs, that part of your brain is deffinetly rockin. I appreciate you sharing this experience with the world, the honesty is amazing and many times you get me thru the day by getting thru it yourself.

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  11. I love that you share this with us. You are wise in your understanding of yourself as you are now, and that offers so many of us the opportunity to look at the ways in which things overwhelm/overtax us. Perhaps even a “normal” (I use it losely) person will benefit from recognizing that each person “sees/feels” things differently but knowing how best you respond in these situations isn’t an easy thing to do, and learning to say “no, that’s not for me” is hard, too.
    So well done. You’ve learned more and in the process are helping US learn more about ourselves, and what you’re going through, too.
    You are an inspiration to me, and I’m very grateful you let us in, even a little. I hope your holidays are lovely, restful, and full of the things you enjoy and care about.
    (((hugs)))

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  12. Thanks for sharing these difficult challenges Kate, I feel like the flu symptons everyday with my severe allergy to artificial fragrances, along with breathing difficulty and the threat of pneumonia, when faced with with the toxic fake scents. They have an adverse effect on my brain, and I cannot find the words either, or breathe. I won’t elaborate anymore, but to me the outside world is like a war zone, and i miss going to even simple events due to all the artificial fragrances circulating about.
    I hope these sudden attacks you have been experiencing settle, and do not return, and that you stay well, we can only hope for the best. I think you are amazing with your skills.

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  13. Morning Kate
    I keep reading your post-stroke updates with a sense of awe at your honesty in how things are going for you. Thank you for sharing with us all. It sounds like you had a busy week, and hopefully the results don’t repeat themselves!
    My partner Steve is also someone who struggles with conversations when there is background music. Bearing in mind he is essentially a healthy person, I can’t imagine how hard it was for you at the party. I’m another person who tends to want to go to bed at 10pm, very much a lark rather than an owl. Which makes parties sort of difficult for us both.
    I hope your Christmas is a calm, relaxing and happy one. And I’ll return to lurking, and reading your blog with huge pleasure and appreciation of you, your determination, bravery and knitting!

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  14. Thank you, Kate. A friend of mine has recently had a stroke and I am planning on sharing your heartfelt and poignant experience. You are a brilliant and wonderful artist, writer and knitter and I am so glad to have recently gotten to know you.

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  15. Hi, Kate,
    Don’t worry about the party… many people have apprehensions in that setting. Mine include dealing with a very shy temperament and IBS. I’ve come to think everyone has some physical weakness that, if not present from childhood, will manifest by middle age. It could be respiratory, digestive, heart-related… For you, it happens to be neurological issues after a stroke. The one who looks down on others might find himself broad-sided by an issue of his own. You have so many gifts that connect you with people the world over. That is hardly isolationist! :)

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  16. HI KATE — what a week – you have such gumption – if you had not done what you had done this week , you would have at some point – so , guess it just had to be tried – looking and hearing at all the amazing things you do , its sometimes hard to remember that you do have all these stroke “after effects “- then a week like this one comes along– you have come so far with your determination , and ever TOM’S support too —- glad to hear you had time with your friends —-cheers –pat j

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  17. Dear Kate…I am a brand new reader of your blog, and I LOVE IT…! You possess that “rare” quality…the ability to view yourself honestly, yet compassionately…this will carry you through the darkest of days, please know…Parties of the sort that you described are limited in their ability to spread goodness among us, so please do not despair…enjoy your precious friends, your family, and know how much you and your amazing abilities are respected…

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  18. Someone once described you has having a fearless spirit – here is that spirit again, lit with courage and glowing with a reflective quality that will continue to move you on your incredible journey. I can only imagine the difficulties you face in daily life, but your way of encountering and considering them is truly inspiring. I have a 15 year old nice with cancer, who may be about to lose her leg before Christmas (they are trying to save it…). She is another brave, although terrified, spirit and has inspired me also. Thank you for sharing your experiences, both inner and outer. It’s actually a privilege to be invited into your world in this way.

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  19. I have moderate hearing loss in my left ear. I dread parties and gatherings because when there is more than one noise, I hear nothing but a loud hum and can’t focus on a single voice. But that’s just hearing loss in one ear. I can’t even imagine having the kind of neurological damage you have and going to a party. I can’t imagine having it and accomplishing so much in my everyday life that you do. I think you’re an amazing woman.

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  20. I had what was probably walking pneumonia recently, and there were several days where my lung capacity got bad enough that I would run out of breath after walking a block or speaking two sentences in a row, and I would hit a wall partway through the day because of the lack of oxygen. You know the sound an ungrounded amplifier makes when there’s nothing plugged into it? I swear that was the noise in my head once my brain switched off for the day. I’m so used to being able to charge around at top speed all the time that it took me two days to identify the fatigue. It was an extremely unpleasant way to discover just how much I take “normal” for granted. As a reader, I’ve admired your strength for some time, but watching my own cheer and compassion and stubbornness dissolve with two days of blank-eyed wheezing have convinced me that you have the heart of a lion.

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  21. You are an inspiration in many ways both creativity and in daily life. I admire your efforts on this often difficult journey your on toward a fuller recovery. Know you have a sizable cheering squad.

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  22. Kate,
    What I especially appreciate about your blog is that you don’t sugar coat your illness. You express your frustrations, successes, ups and downs. I am inspired by your courage, honesty and perserverance. Sometimes I forget about your physical limitations when you post such gorgeous photos and inspired knitted designs.

    I am recovering from an illness where extreme fatigue and brain fog are the most difficult parts. I am learning how to slow down a lot and soften my attitudes towards myself as well as others. Thank goodness for knitting and my knitting friends! It’s a huge adjustment for us highly active types to just stop. I hope once I am over this I can remember to live life in a much softer way than I used to.

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  23. I suffer from severe osteoarthritis in my legs and often feel sorry for myself because I cannot do all the physical activities I would like to. Reading your posts puts things into perspective. I agree the best is to keep plugging away, staying still only makes one more depressed. I luv your pics and your courage!

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  24. The strong social connections that you’ve made in the digital world prove you to be generous, talented, thoughtful, and articulate. Disabilities are invisible. Who needs a crowded noisy room? You have your own admiring crowd here. Like everyone who knows you through this medium, I am inspired by you. Best wishes to Tom, your friends, and you for a Peaceful Christmas and a Happy New Year.

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  25. I admire your courage and persistence and have the hope and faith that your condition will continue to improve. You are an inspiration to many of us, and I appreciate your sharing your progress. I agree that it’s important to spend your time and energy on time with friends and events that you enjoy!

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  26. I’m sure you’re right in that you overdid it at the start of the week, and I’m so glad that the end of the week was so much fun… sounds lovely. Parties? Pah. Who needs ’em?

    (I’ve some frequency-loss deafness, so very minor an annoyance by comparison, but your description of the chaos of noise and sound at a party really resonated. Did you enjoy these sort of events before? If so, maybe persist and give it another go sometime; if not…)

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  27. Thanks for sharing about your post-stroke problems. This helps non-sufferers understand – a little. Today I finished reading “In the Blink of an Eye” by Hasso and Catherine von Bredow. Hasso had a massive stroke in 2000 which left him with locked-in syndrome where all he could do was blink his eyes to communicate but managed to write much of this book. It was thought provoking, and humbling.

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  28. Thank you Kate for continuing to write and being so honest. My son Sean, (22) has right-side hemi-plegia and drug resistant epilepsy. He is a wheelchair user, and like you finds large social occasions challenging. As he has a significant learning delay and communication problems, there has been a lot of guess work on my part. Reading this post has been like a little window into his world, especially in relation to post seizure fatigue. His week is carefully structured to make sure any activities are spaced out, but he still spends most of the weekend recovering. Getting the balance between fun and being careful has always been a challenge. I now walk with a stick outdoors, and can’t carry a bag with any weight in it, so had a small victory of sorts last Wednesday. I walked a mile to catch the bus, then walked from the bus to catch a train then once arrived, walked to my destination, then repeated the process the following day in reverse. I paid for it for two days afterwards with quite a bit of pain, but the feeling of achievement was immense. I thought of you, Kate, as I sat knitting my ‘recovery’ Pi shawl. You are an inspiration. Frankly, I can think of few things better than spending time knitting with your bestest friends…parties, are over rated in my opinion. Sending a heart hug to you. x

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  29. I’m so sorry — the beginning of my post above sounds awful. I meant to be complimentary and sincere in the sense that we all here think you do amazing things with your life and I wish I had one or two of your many talents! I can’t imagine the dismay you felt at not coping physically at your event, especially when you felt you were ready to venture out. I’m so happy for you though that your following outings were successful and fun, and yay for fun! I love your photos … full of the wide world where you are.

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  30. Thank you for sharing your experience. I have constant head and neck pain and censure my activities in a similar way. I admire your strength to relearn so many tasks, knowing that there really is no alternative. Your knitting designs are gorgeous and I wish I had half your talent and energy for design.
    The beauty we can create in the world through friendships is significant, and that’s what keeps me going. I’m happy to hear you have good close friends, in addition to your husband. It’s much harder doing this single.

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  31. I think its great that you went along to the party. Sometimes, just getting back into the ” normal ” situations a little at a time is a really good starting point. Im sure everyone was delighted to see you and being friends, they would have more than understood how a situation like that would be tiring for you.
    I have hip problems and understand how you feel about sitting down when everyone else is standing. Its just the way it is for me now. People will either like it or lump it. You do what is best for you.
    I bet they can’t knit like you :)

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  32. One of the nicer things about growing older is those large social/work get togethers become fewer and fewer. I always found them a challenge and I have not had a stroke! I wonder who REALLY hears well in those situations? They’re certainly not conducive to a conversation. They’re great for schmoozing, but a girlfriend time is far superior.

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  33. How interesting that so many of us, whatever degree of “health and strength” (good expression) we may have, agree that parties are not the fun most people presume them to be, are impossible to hold a conversation in, the small talk is tiresome, hearing is difficult among the background din that seems to build, and are simply exhausting. Reading the comments have made me feel a bit better about my social reluctance..
    I agree that being selective with your time and spending it with loved ones (including Bruce, of course!), closest friends, and nature is restorative, inspiring, and crucial for your soul and well being.
    Kate, dear, my best wishes for the holiday season and a peace-filled new year.

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  34. When I was recovering from giving birth to my son this past summer, a friend who spent some time with me asked if I was worried about family or friends coming to the house. To which I replied, “the only people I want to spend time with are those that couldn’t care less if my floor is vacuumed and my dishes are washed, or if I had a shower today.” Friends who are good company even when you are not at your very best, and especially when you need TLC, are worth their weight in gold, and the rest can go hang. Skip the parties without any sense of loss, the friends and the walks are far more valuable, as you say. Best. JL

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  35. Brava, kate, Brava! I was the learnings could always just come from insight, not rotten experience, but we don’t seem to get that all the time!

    So much has been said here. I’ll just “me too” thoughts that parties are exhausting even without a stroke and that knowing the most valuable way to spend time is a gift.

    I hope you feel restored very quickly! Onward, you are always moving onward!

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  36. Hello Kate – The Company Of A few Special Friends is a rare and beautiful gift. I am so pleased that the challenges of your week included such an event. I think I can say that I am pretty socially inept at parties in fact absolutely useless in a group gathering of people I do not know very well. Just what is it that everyone has to talk about?? I return home exhausted, foolish and battered and wonder why I went and I am fit in body. So – all I can say is that those parties are no great loss – and how wonderful that you have fun with dear friends.

    Happy Christmas To You and Tom and Bruce – May You Feel Happy, May You Feel Joy, May You Be Content….

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  37. Give me the zombie-loving mates any day! If my particular zombie-loving mates were knitters, I’d happily swear off all other social engagements without the tiniest twinge of regret……

    I like the common thread in the comments about just not doing what you didn’t like that much ‘before’ – it’s not worth the fatigue and effort. Good advice for all people, I think….. social obligations have never really been my thing, either.

    Sending restorative thoughts your way, Kate…. xxx

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  38. Thanks for sharing, Kate. I can’t handle social gatherings most of the time, let alone when I’ve got a migraine. Your post has given me some insight into hosting gatherings, though. I will try in the future to ensure that there are a few quiet areas for small groups of guests to sit and chat without a lot of background distractions, and yet aren’t cut off from the main party. I imagine the same ideas will be true when I go to arrange classroom spaces.

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  39. I have the same problems at gatherings due to my stroke (1998. I use a cane for stability because i can not shift my weight quickly to get out of their way. I usually try to sit somewhere quieter. People who know me are ok with this. Those who don’t know me may think I’m being rude but that’s my life now. Thanks for sharing

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  40. Live and learn. You’ve learned something early that I learned later – that parties just aren’t worth the time and effort regardless of your health status. I would come home wondering why I went in the first place. I hardly knew anybody, didn’t have that much in common with half the other guests and the food was just so-so. Now, give me a few hours with dear friends doing something I love and I’m so much happier and at peace with myself.

    I’m sorry you had a difficult time with the consequences of the ‘sensory overload.’ I once worked in the TBI unit of a rehab hospital and people are only recently thinking of strokes as a TBI and treating it as such with rehab procedures and such. I think you are doing marvelously well considering what you have been through. However, I’m sure there are times you don’t think so. In the meantime, do those things which give you pleasure and satisfaction and you will do well.

    Merry Christmas!

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  41. Thank you for sharing your thoughts.
    I loved to read your post and the comments too. You have a way of analysing things both rational and emotive that always amazes me.
    Life is a try and error test and we really should treasure the things and persons that strengthen us. That knitting party must have been quite special!
    The world seems to tell us what to do, feel or like all the time but each one of us is an individual. Like the slow food, the slow dressing or wovember, we should wonder about slow living too. Stroke or no stroke!
    Be well, live well and have a great Christmas.

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  42. I have endometriosis, adenomyosis, fibroids, and irritable bowel syndrome with mild lactose intolerance. To say the least, parties are difficult. I don’t drink for a myriad of reasons, including these medical issues; there are a lot of foods I need avoid because them as well; and, on an off day, I also find myself struggling to focus on people, to share personal space the way one does at a party, or to stay awake past about 10 pm…and I never liked parties much before, either.
    All I can say is that you are not the only person, by any means, who struggles with these seemingly “normal” social gatherings. For some of us, small groups of close loved ones are all we need…I hope you get to enjoy some this season.

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  43. I agree totally with Roobedoo.. I can’t (wont) cope with these ‘social gatherings’. I have my ‘health and strength’ (as my granny used to say) but I feel really uncomfortable on these occasions. I can’t hear what folk are saying, I am not interested in ‘small talk’ and I do start to feel disorientated. Give me a few good friends around the table with some good food and decent conversation and I am happy. Life is too short to suffer these occasions. Happy Christmas, Kate.

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  44. Kate, Thank you so very much for sharing with your loyal readers about what you are going through. I appreciate your honesty and throughtful reflection more that I can express in words alone. You are in my thoughts and prayers. All the Best, Peg

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  45. When I read about your physical pains and daily difficulties, I am amazed how you are able to keep up with blogging. Your “voice” here is so coherent. And you keep on posting so well-researched and ever so interesting pieces. I’m in awe with your strength.

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  46. Managing. I think you manage just fine, and perhaps better than most of us on some days. It is too bad though that you had to go through the “event” to find out what is most important in your “present”. The “event” represented part of what has made you “you”, but now you know it is not the right time for it. I bet that eventually you will get back to it though. In the meantime, thank you for being so forthright and honest, esp. “here” in public. Your lovely calming photos help set the tone for what keeps you going, too .. I can’t imagine you living any where else :) And whether you believe it or not, your posts help us cope with our own issues.

    But of course what we all love most at the moment is your knitterly life, and your life with T & B, and the magnificient patterns you come up with for us. I have wool from Santa waiting to be cast on for your moebius!

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  47. I have recently discovered your blog and it is such a delight to read. Not only do you have sublime gifts in the realms of photography, writing and creating beautiful knitted garments but you seem such a NICE person as well. Bravo for your tenacity and guts, I look forward to reading the archives to discover more about your life’s journey. Thank you for sharing, and a happy Christmas from Australia.

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  48. While I don’t have brain injuries, in late October I started suffering from extreme anxiety to the point of needing to take extremely sedating drugs if I didn’t want to cry/scream hysterically. I ended up having to come home from school, and now I’m seeing a therapist and a psychologist and while things are a little bit better, it’s still quite bad. I completely understand about needing to pace oneself and not overdo things and pick and choose between activities. So while my condition is nowhere as serious as yours, your post still made me feel a little bit better, and a little less alone. Thank you <3

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  49. Kate, your insights and descriptions are amazing. As others have said, vicariously watching you get through day-to-day activities with your handicaps helps me cope with my minor problems. You handle everything with such grace and strength. You are an inspiration to many of us, and you express yourself so well. And your knitting is phenomenal! Thank you for letting us peek into your life, even when you are struggling.

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  50. i had hearing aids installed this year, very nice digital ones which sort out the layers of music, background convo and foreground convo, and the woman told me to pace myself, first turning them on to only 80 per cent hearing capacity, and wearing them for only 4 hours a day, because my brain would overload. i laughed at her and wore them for eight hours five days in a row.

    and had to spend two days in bed.

    it’s real.

    deafness and not drinking make the sort of party that is a dubious pleasure to start with startlingly terrible.

    you are not a alone. there’s a whole universe of people who socialize AT BREAKFAST. or tea.
    xxx

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  51. Kate,
    The experiences you share around neurological fuzziness and malaise sound very similar to what my dear friend, who just passed away from a combination of breast/lung/brain cancer, experienced. Towards the end of her struggle she was dealing primarily with the symptoms of brain cancer, and had had a few seizures. I suspect she very often was living in the state that you describe as being the few-days post-seizure, whether or not she’d had one. She did not often write down (for me at least) what these experiences were like, but I know they had enormous and immeasurable impacts on her social life and her relationships. Thank you for sharing. I’m finding the descriptions somehow profoundly comforting (as if they are giving me a window into her suffering) and helpful in processing a bit of my grief.

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  52. Kate…it was so nice to spend some more time with you yesterday! Sarah was indeed the loveliest of hosts and created a warm, festive and calming atmosphere! I was not aware of any zombie like behaviour on your part! Hugs x

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  53. Dear Kate,

    many thanks for sharing your week with us. It helps people reading that they aren’t the only ones suffering during a long-term recovery.
    What you managed the past week is impressive and most probably would have been quite some work for someone who hasn’t suffered from a stroke.

    Have a wonderful christmas and a very happy new year 2012!

    Alex

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  54. Dear Kate: before to read your post today, I was crying about all my economic problems and my waist pain. But now you just show me that no matter what, I can deal with all of it. From now on, I know that across the atlantic, there is one wonderfull and brave woman, living her life the best way possibly.

    love

    Verónica

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  55. Kate – You are so brave not to let that seizure/migraine/terror make your subsequent decisions for the week. I have a variety of neurological dysfunctions and once my body is severely taxed (and the worst stimuli are not always clear ahead), my symptoms erupt in painful/ embarrassing/ debilitating blooms. I’m inspired that you were able to take that painful and frightening episode and turn it round to find there was still room to meet up with fellow knitters. All too often, I find myself burrowing in deeper after an attack, but that isn’t necessarily the best option. Pacing – yes that is the key, an elusive key sometimes. One of my doctors told me recently that there is only one way and that is through; how I go through can vary widely but I won’t go backwards, so I might as well find my pace for going through it. Thank you for your stunning knitting designs, your talent with words and your honesty. I appreciate them all so much. – Amy

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  56. Despite being “fit and healthy” I have a similar problem with parties and social occasions – I glaze over very quickly trying to distinguish what people are saying unless they are talking directly to me and it doesn’t take long for me to zone out completely and want to go home. It is exhausting! What I am trying to say is – you are not alone. Parties are not all they are cracked up to be! And why suffer? The later knitterly gathering sounds so much more manageable. Pick your battles! Save your energy for the things that matter to YOU and don’t worry about appearing impolite. And definitely seek out the open spaces which clear your head. Be well and look after yourself!

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  57. Kate you are bloody brilliant. And I agree with you about the neurological thing, though only from the very lightweight end of migraine. I do feel stupid and truck-runover, even if I haven’t suffered much pain. I quite often get right-side tingling and dullness, and rarely aphasia; and it is difficult to define the slowness afterwards.
    You really have come a long way, Just read back to see!
    Happy Christmas

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  58. Hello Kate,
    Thank you for sharing your challenges with us. Our family just watched a documentary about Ram Dass and his journey post-stroke. I thought I would share the title if you are interested. It was lovely to watch.”Ram Dass: Fierce Grace” Hoping you and yours have a blessed Holiday and New Year.

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  59. I find your post stroke difficulties so interesting; how you explain what you are going through. I usually imagine you as a very WELL human being that treks out with Bruce everyday for a 5 miler and knits up a storm once home again, but there are definite restrictions in life that are caused by that stroke. Your photos show a healthy talented woman who spends a lot of time in the outdoors but if I actually met you in person I would recognize that you had a stroke? I find it jus incredible that you knit so beautifully. Happy Christmas!

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  60. Hi, Kate, I wanted to add my admiration of you to the many kind comments above. Your courage is a great example to all of us. What you have written on the blog about your stroke and your long recovery has helped me better understand what my husband has been going through since his stroke in 2009. Now that I know what he may be experiencing in situations like you describe, I won’t be so impatient with him anymore. Happy Christmas to you & Tom & Bruce!

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  61. Extremely interesting post; so glad you write about what is happening. Love the photos too, beautiful! Your write so well.

    Needled is my favourtie blog.

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  62. HI, I have lived with a disability all my life. When I turned 40 , it really caught up with me….even though thankfully, I have not had a stroke. I still struggle with a life style balance. Pain & fatigue are my constant companions…However, family and friends are the best remedy..also craft is a wonderful healer to my spirit. So I thanks my Grandmother Grace who sat me down when I was about 7 and taught me to knit a peggy square. Merry Christmas Kate and all the best for 2011 and thank you for your wonderful knitted creations, of which I have a few and fantastic blogg which I love to follow…….. Janice

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  63. Thank you. You give us so many gifts… textile fun, knitting history, beautiful photos, delightful and intelligent designs. Also this elegant description of such an intangible world … the inner experience of someone living with a health condition. It is a mysterious suffering. Something that we learn gently from you which cannot just be overcome and hurried along. You are making us better caregivers, better listeners, more understanding friends. From far away and nearby, we cheer you on and would be happy to sit with you in a quiet spot over a cup of tea and enjoy your lovely company.

    Bestest hugs and merry Christmas to you and yours.

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  64. Amzing you were able to do as much as you tried. I have both migraines and panic attacks, and on the rare occassion that I have both at the same time, not only do I feel like I’ve had a brick tossed at my head, but also straight into a seizure from full blown panic attack without the help of anxiolytics. Withdrawal from anxiolytics can cause seizures if not handled correctly, I used to use the anxiolytics, and something about the neuro part of the migraine can cause the same type of seizure in me. The first time I experienced blindness was in a classroom, where I told the instructor I couldn’t see him. I was desperate for someone to know I was blinded, I didn’t know it could happen. It is very scary. It also began to keep me from doing anything I felt would set me up for the same thing again. This seems quite natural of a response. I’ve only begun to do more things in the last couple years. Both noise and crowds can bring on either migraine or panic attack or both. Since I don’t want a life living on Xanax, I do a lot less than I might have, but I tend to enjoy what I do a lot more, simply because like someone alluded to earlier, I don’t try to do anything I didn’t enjoy. Now I do only those things you found important, quiet times with good friends. It hasn’t limited my life, instead enriched it with time spent doing what I truly enjoy, not what I am expected to enjoy. That is a real freedom, something many do not feel able to choose. The pain of a migraine, the way it makes one sick (does me) and then the panic resulting in blindness or seizure or both are enough to send me to bed, to begin to help restore my system before being taxed again. It IS exhausting. The only “should” or “shouldn’t” in regard to what or how to do or spend one’s time is the one of listening to ourselves, ultimately.

    Sometimes I think I am lucky in that I have had this experience to cause me to decide what I really enjoy, and what I “think I should enjoy” and they are quite different. I no longer do those things I did not enjoy. Seems simple, but it took a brick to my head to learn this.

    I am so glad you wrote all that you did, including the beautiful photographs, as life is not always easy, but nature is beautiful to look at and enjoy. What a nice way to put together your thoughts and feelings. Nature is so often solace to many people. Thanks.

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  65. I am glad you have a group of friends it is worth making yourself feel worse for. I imagine all the good feelings you give and receive in their company may help in some way, at least that is what I hope. Happy Holidays to you and the rest of your family.

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  66. I admire you so much when you write in such detail of your problems – you have such strength. You just have to remind yourself how far you have come, and with your sheer grit and determination you will still continue to progress.
    Given the choice, I would much rather have fun with knitting/sewing friends than attend a more formal party …… if nothing else, we have better cake!!

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  67. It sounds like you are struggling to expand yourself while at the same time trying to gauge your true limits. I suppose we all should be doing this all the time and I really respect your tenacity in not just settling into your comfort zone. Even without a brain injury, I find some of these settings extremely difficult (especially with the sound issues) and find that migraines seem to follow overstimulating events. Anyway, I hope you have a lovely holiday–expansive without being stressfull!

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  68. Bravo to you for trying to understand your limitations. Just remember that you can not learn to balance if you do not fall from time to time. Though you might feel foolish for having attempted so much, I found it inspiring and am proud to “know” someone with so much gumption (you superstar, you!).

    I will second the sentiment of the Crohn’s sufferer, above. I have the less debilitating, yet just as frustrating, Irritable Bowl Syndrome and, as it is a mysterious and misunderstood condition, find myself having to explain myself constantly (often to people who have no bloody clue what it is to live with a chronic condition). I’ve had to make serious changes to my life in order to accommodate it. Travel, parties, high stress/high adrenaline situations, and even camping (the HORROR, I know!) have all been drastically reduced in an effort to help me manage the condition.

    And my brother is mentally disabled and epileptic, so I can relate to that side of things, also.

    You really are an inspiration Kate – I find myself telling people (non-knitters, naturally) about you all the time. We’ll be discussing adversity or challenges and I’ll say “I know of this young woman in Scotland who is a knitter…”. I hope you know just how much we all look up to you.

    dw

    PS: As someone else mentioned above, if you have never heard of Jill Bolte Taylor, you might want to watch this:

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  69. wow, dude. what a rollercoaster of a week. I myself with no hearing or balance problems have come to DETEST large parties just as much. can’t hear, can’t talk to anyone, never wind up with time with the few people you really want time with, feet hurt, want to sit down, no one else does, it’s annoying — I’d much prefer to see people in groups of, say, 4. :) with only quiet background music. or none.

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  70. I don’t knit. I stumbled upon your blog some time ago after Googling “post-stroke fatigue”, which I also suffer from. I so understand what you wrote in this post. I find the “party” kind of gathering very difficult — my balance is much worse for some reason in a crowded, strange room. And, just as you describe, my brain seems to grow confused with so much stimuli coming from all directions and through all senses. Thank you so much for writing about your situation — it’s very good for me to read of others for whom “normal” is quite different from others.

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  71. Kate,
    My heart goes out to you and your amazing courage and strength.
    I suffer from some nuerological disorders from having a form of arthritis so I have my good and bad days so i do not go to many social events anymore myself.
    Reading your thoughts and feelings here is a great inspiration. Hang in there and stay strong.

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  72. I had a stroke in 2003 and for several years afterward felt similarly… limited by my brainpan, I suppose. It took me some while before performances of anything became anything but overwhelming, rendering me a sobbing mess, unable to think. Brain injuries tend to be unique to the person who has the brain but for what it’s worth, this year, for the first time, I can handle things that would have rendered me into that unwelcome state. And yes, I think that it’s accurate to state that you need to make yourself do these things, within your energies limits, to be able to do them again to any degree. The degree of success may ultimately vary but I have found that it is worth it, if only because I tend not to spend my time relearning things I never enjoyed.

    For me, it has taken time but I have found that this year, things seem to be going more smoothly and if I’m not up to my previous levels, well, I’m 35 and not 27 anymore, and haven’t picked up a violin in that many years. Best of the best as you continue to recover.

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  73. Happy Christmas to you Kate! You continue to be one strong gutsy lady and by the way-I have Always thought parties were/are way over- rated!

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  74. Thank you for posting your thoughts on your week. It really helps me to realize how important it is to let others decide on their social limits and to never push them beyond those comfort zones. I think it is very important to get out and you do this often. I like the suggestions of letting your host know a quiet area may be needed. In fact I need to remember this as well!

    You are beyond brave and thank you for reminding and making us aware of ways to help others.

    I love your writing, photography, knitting and your honesty.

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  75. My heart goes out to you… I feel totally overwhelmed in any group larger than, say, 8 intimate friends and even when it’s just ‘us’, and evening like that exhausts me. I dwell along the edge of the crowd, if I choose to go and never stay very long.

    You should not cut yourself off from gathering like that, though, because you are unable to stand up and move around freely. Make sure to pick and choose your invitations and contact your host or hostess prior to the event, to arrange a small corner with a group setting of a few chairs. Any host or hostess who would like your company, will be glad to do anything to make it possible. That way, you won’t feel yourself to be at a disadvantage and you’ll find that most people will relish a chance to rest their feet and keep you company, because to me, you are one of the most interesting people I have ever had to pleasure to ‘meet’.

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  76. I have complex migraines and experience very similar events. It IS very hard to figure out how to pace oneself when one is naturally an over-achiever and prone to feeling lousy emotionally and spiritually while doing “nothing.”

    I wish I had an astoundingly creative circle of friends with whom to gather, as you do. What a group! I’m so glad that you have that support and that they were blessed with your company.

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  77. I’m a 23 yr old with a two-year-old crohn’s disease diagnosis; it is a very different condition but your posts about living with your own fairly new medical limitations really strike a chord with me, especially the reflections about fatigue and the need to block off time for RECOVERING from things that I would’ve done without a second thought two and a half years ago. thank you so much for your candidness and your beautiful writing!

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  78. So sorry you had to go through all that in the early part of the week, but now no more parties – yay!!! just cozy get-togethers with loved ones – yay!!! You are so inspiring with your determination and courage – so often we go on with our lives blithely unaware of others’ situations and I’m glad you voiced this. Let go of the ‘disheartenment’ and be overjoyed that you will never go to a party again!!!!!!!!

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  79. Given what I have learned about you through this blog, I wonder just how much or little you enjoyed this type of social gathering before your stroke. Never one for large gatherings myself, I have recently begun to lose my hearing rather suddenly and now the idea of going to a party like this appalls me even more than before five or more people in a room talking sounded like a jet at takeoff. Pace and Peace to you.

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  80. Kate, you are amazing and an inspiration.
    I don’t do crowded parties, they make me feel ill and irritable. I much prefer small gatherings with people I enjoy being with and peace an quiet of the countryside is unbeatable.
    All the best,
    Em x

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  81. Kate, I work in a quiet flower shop producing things and being busy. I, fortunately, haven’t had a stroke or anything of that nature but being in a crowded room with people and music and seemingly limited oxygen makes me run for the hills. Have a lovely peaceful and productive Christmas.

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  82. I just want to let you know that your posts are very inspiring to me – I’m not dealing with the physical issues you have been, but I am dealing with major depression. Your words remind me that I need to appreciate the smallest abilities that I do have and that with strength (and my anti-depressants lol), I will get through.

    I visited Edinburgh and the Highlands this past summer and your photos bring back wonderful memories. I love your designs and I hope someday to have the skills to make one.

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  83. Sweet Kate, Your lesson: “it is definitely worth spending time with one’s friends, among whom one feels comfortable, whose company is enjoyable, and who do not really care if one behaves like a zombie or not” is a Large Life Lesson for all of us & which we’d be happiest to heed. I’ve been trying to listen to this revelation for years & annoy myself when I don’t.
    Thank you so much for sharing such a large part of yourself with us. All the very best of the season to All!

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  84. Thank you for sharing this with us, Kate. I think that even though many of us haven’t had the experiences you have had that have forced some of these choices on you, we could all use a reminder this time of year about making choices about what is really important to us. How we should best use the time we have, and to remember to be grateful for all the things we take for granted. You inspire me in so many ways, thank you for that. Peace to you, and may you have a happy Christmas and a better New Year! Love, Virginia

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  85. I have leaned so much from you about how to be a more helpful person to those experiencing brain traumas. Too often we glibbly go through our encounters with others little thinking about the impact on them in terms of sights, sounds and movements, especially those recovering from various illnesses or events.

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  86. When I am migrainey I become very uncoordinated- things seem to fly off counters /tables or just fall over when I walk past. Word-finding is also an issue and sometimes I find that my mind just won’t pull all the ‘stuff’ together to actually let me have a coherent thought, never mind actually speak that though aloud. Bah! But working out what IS worth the effort is so important. When my neuralgia is bad the whole house goes to hell in a hand basket but quite simply, I don’t care…well, I do, but I am working on that. HOpe christmas (or whatever you do at this time of year) passes smoothly and with fun.

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  87. I am humbled and amazed by your strength and courage. Thank you for sharing this with the world at large.
    Happy Christmas to you!
    (p.s. I bought the Boreal pattern as soon as I saw it. I am mulling over choosing the right yarn for it…so gorgeous!)

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