Only one ‘bad’ day last week, and as I was feeling OK this morning, I decided to try to expand my peripatetic horizons once again.

I don’t think I could ever tire of walking on this path. On a bright Spring day, its shadows are very inviting. I saw a tiny wren dart past me into the ivy. And a little further on, I encountered two sentries.

These duck buddies are perched twenty feet in the air atop an ancient gatepost which I assume belonged to the long-demolished West Warrison estate. (Long before they built the cemetery and railway here, this area was known as Puddocky, which is a much nicer word than boggy, and comes from the old Scots name for toad – puddock).

This was a walk with a purpose – to pick up some pencils from the art shop on Dundas Street.

Mission accomplished, I decided to carry on up the hill into the centre of Edinburgh.

ye gods . . . the metropolis.

This was the first time I’ve walked into town for more than a year. It felt good. But I did not overdo it – I bought some shampoo in Boots, and went straight back down the hill and home again. The excitement! Seriously, though, it was exciting. I doubt that I shall ever take the ability to get about on foot for granted.

In other news

I wish that someone had given this to me months ago

This booklet is produced by Headway, and it really is the best thing I’ve read on this subject. Believe me, I have seen a lot of pamphlets on post-stroke recovery, and, to be frank, they have not been that much use to me. A few days after I was admitted, the staff on the ward gave me some literature which was supposed to be helpful, but which I found both terrifying and depressing. This is because ‘Life After Stroke’ pamphlets are full of smiling, sedentary octogenarians, and patronising advice about lowering one’s weight, cholesterol and blood pressure. As I was not elderly, nor had a stroke because of any of these underlying problems, I found myself getting both upset and annoyed by these publications, which in no sense addressed what I was going through as a previously energetic and otherwise healthy younger person. Because the Headway booklet is not illustrated with photographs of happy ‘survivors’, there is no opportunity for a ‘that is not me’ reaction. Also, probably because this charity deals with traumatic as well as acquired brain injury, there is less of the judgemental gubbins about living a healthy lifestyle which dominates so much post-stroke literature. I found it really, really useful – mostly because it talked about people who were going through exactly the same things as me. Neurological fatigue can be particularly frightening because many of its symptoms – slurry speech, blurry vision, worsening mobility, the inability to focus the brain on anything at all- can seem as if you are having another stroke. I have been scared by this on more than one occasion, and it was so very reassuring to read about these symptoms as being perfectly normal. One person spoke of how engaging in conversation when fatigued seems like you are having to translate everything from a foreign language, and this so very precisely described how I feel when listening to people talk that I found it quite startling. In my experience, while fatigue is one of the most difficult things you have to deal with following a stroke or other brain injury, it is probably the thing that interests health care professionals the least, because they can do so little about it. One has to try to ‘manage’ fatigue, its effects and its triggers, as best as one can, and at least this pamphlet suggests some ways of doing this in a manner that is straightforward and non-patronising. Reading the words and advice of others who have been through similar things also made me think that, since I came out of hospital, I haven’t really talked to anyone else who has had a brain injury, and that it might actually be helpful for me to do so. I think that Headway have an outpost in Glasgow. Perhaps I shall fight my hermitty tendencies and get in touch.

56 thoughts on “another first

  1. Hello. Stumbled across you through ravelry but also happen to be a neurophysio. I’d just like to recommend Headway, especially for younger people who have had a stroke. I’m based in London so don’t know about your neck of the woods but go on give them a go! Your deco cardigan is so gorgeous that you may inspire of the hooks and on to needles. Thanks, Penny

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  2. Your walk looks so incredibly lovely. I imagine it’s more so when it becomes an accomplishment, no? It’s interesting–and frustrating–how illnesses are stigmatized so deeply. It happened to me when I was struggling with depression (in spite of being in a positive dating relationship, having a loving and happy family, and a happy childhood). I’m sorry to hear that it took so long for you to find something that actually applied to you, but glad you have it now! As the daughter of a nurse/nursing instructor, I often hear how little useful information a lot of patients receive and it always frustrates me. This should not be.

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  3. As a nurse I would say – By all means seek someone out who has had a similar experience. You will be good support for each other. Hang in there and keep walking. I admire your courage and ability to share your experience with others.

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  4. I wonder if that booklet might help me in some way. I know cancer if much different than what you are going through, but let me tell you about the laundry experience I had this week. Lifting my blanket out of the dryer did me in. My goodness. I know I will recover from this in a year of so. But tell me that when I try to lift the blanket and fold it.

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  5. It’s not at all the same, but I can relate on some level to what you’re saying. I have what is probably a vestibular nerve injury, and my vision has been greatly affected. I’m only forty years old and was previously in very good health (was in fact a national team distance runner in my 20s). It’s extremely frustrating to deal with doctors because given that I can still see and read, they don’t care that I feel as though I’m seeing and reading as though looking through water, and that often one or both eyes won’t focus at all. Prior to the illness I had 20-20 vision. I work as a quantitative modelling economist and so am supposed to be writing programs in statistical software…which is interesting when living in a fish bowl! I’ve felt frightened and alone in this for many months. The doctors just shrug their shoulders and tell me that they “don’t know” and that the original problem (vertigo) “usually goes away” and “maybe it’s your migraine tendencies that are causing trouble with interpreting pattern.” I’ve had to learn through this experience and experiences with injuries that I had as an athlete that it’s up to me to push forward and trust the information that I’m getting from my own body (and in my own resources, reserves and ingenuity). What a lovely thing to find commentary from people who have experienced what you are experiencing! You’re an inspiration and I wish you the best.

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  6. Kate, I’ve sometimes been thinking if I should ask to put you in contact with a friend of mine, who suffered a stroke about 2 years ago, she is in her thirties, too… I showed her your blog at some point (she doesn’t knit at all, so she wouldn’t have come across it) and I think she used to read it a bit, but I’m not sure if she still does. She lives in Strathpeffer, so not quite in your neighbourhood, but in case you are interested in talking/writing to her, just mail me…

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  7. http://www.headway.org.uk/Branches/edinburgh.aspx
    I see someone has been before me with the link. A friend’s husband (and the friend) found them very helpful after a brain injury due to road accident.

    The metropolis! After moving out to the suburbs, I found Tollcross at rush hour very busy, goodness knows what Princes Street must have been like to you! I am so glad you could make it there and back again under your own steam. It was such beautiful day yesterday.

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  8. I have a hunch – an excited hunch – that those pencils will be utilised for colourwork charts! HURRAH!

    …also, hurrah for braving the metropolis. Cities are the most difficult places to navigate when one has mobility issues and I know just what you mean about never being able to take walking for granted when you have experienced difficulty with it. I am so happy to see your familiar paths looking inviting to you again, and to meet the duck buddies and to hear of the busy wren. I love what the Spring does to the birds; they are positively loopy at this time of year,feeding their young and showing off would-be nest-raiders with their displays and calls.

    I am also extremely glad that you have found useful literature relating to your experience of having had a stroke. I too was enraged by the ageist depictions of arthritis and the constant mantra of “you’re very young to have that…” which I encountered in my quest for medical care and advice. I was enormously empowered by finding people of my own age with impairments, because it helped me to feel less lonely and isolated in my experience of being alive and dealing with very specific things.

    So HURRAH for HEADWAY!

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  9. Sounds like a good idea :-) will do you good to share your thoughts with other people who’re experiencing the effects of having had a stroke.
    I’m working as a nurse in Denmark and every day I asist people rehabilitate after having had some kind of braininjury. Mostly strokes.
    Just want to tell you that you’re doing great ( been following you for a few months on ‘needled’)
    Will definitely see if I can get hold on the pamphlet you’re refering to. Have you got a link?
    Pia (from Ringe)
    p.s. Love ‘Caller Herrin’ which I knitted in Jan. Getting a lot of compliments :-)

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  10. Hello Kate !
    Hope you feel good (or better) today. Take care of you and don’t try to do much more than you can .In France ,we say something like “a day after another one”…take your time…I’m sure you’re on the right way…
    I never went to scotland but it seems to be a wonderful place…It makes me dream…
    Kisses from France

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  11. I suspect it will help a lot if you can talk to others who have had a very similar traumatic experience. I found this myself after my son was stillborn — sharing with others who i felt could truly relate was both healing and liberating. We all felt a certain ease as we assured each other that our reactions and feelings were shared and normal, though they might have been outside of society’s ‘norms’. Well, our shared experience is outside of society’s norms too(and thankfully so!) My MIL told me that her husband had the same experience when he was fighting cancer…she took him to an appointment and he struck up a conversation with another patient and they were able to relate in a way that she felt she never could…because she has never undergone those treatments.

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  12. So glad you enjoyed your extended walk and the good weather. Thanks for the mention of the booklet. I ordered one for my mom, who’s had a head bleed and two surgeries in the last 6 months. She’s 78 and complains frequently about the fatigue level. This may help her to feel better about herself, becaue right now she’s pretty down on herself for not doing more.

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  13. Sounds like your found yourself some reliable sources. I love the pictures of your walks into town. Please keep them coming.

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  14. Yay for slowly expanding your limits. And that wooded path, wow, just gorgeous. It looks like something out of a fairytale, as if wood sprites or little gnomes live just around the bend…

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  15. I am, relaxed (after that beautiful walk). Excited ( that you made it to town-looked amazing). Thoughtful ( how will you go forward -pulling on all your talents and managing that fatique – I just know you will but want you to be careful then think oh heck, throw it to the wind. If anyone can do it, Kate can do it and that is not fair). Happy (that you are doing ALL of it). Joyous ( you do bring your readers so much joy in your daily/weekly triumphs. It is like watching a marathon runner and each time they run then move up a place. We are all cheering you on). Thanks for such a great blog today.

    Love the pics and the coloured pencils

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  16. I enjoyed the walk in Edinburgh – we have got very lazy about going there – just whizz along the bypass/M8/M9 on our way to Falkirk! I think initial contact with people who are going through what you are can be very helpful. However I eventually dropped out of meeting people with my condition – if that’s the only thing you have in common, the conversation can become very limited! I still love coloured pencils – if only I had some of the double-ended ones that I had as a child!

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  17. Gasp – the metropolis! How very brave! I am picturing you (for some impractical reason) clutching your pencils and a shampoo bottle to your chest as you walk triumphantly home.

    My boyfriend has fibromyalgia (chronic pain/fatigue) and he went to a couple of group sessions. Although he was reluctant at first, he came home feeling better about himself, and was surprised to learn that, while he thought he was doing a pretty bad job of lookng after himself, he was actually coping way better than some other people. I think he also really appreciated (as others here have said) not having to explain all his symptoms because everybody knew what he was going through. And to be able to just compare notes with people, like “How many hours a week do you work?” was very reassuring.

    I also agree with everyone above who has suggested that YOU should write some literature about your experience of fatigue! You are a brilliant writer and I’m sure you would be an inspiration and a source of encouragement to fellow sufferers.

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  18. Kate, thanks for the inspiration. I just stole 45 minutes from my morning to take the dog out. Spring makes it all a bit easier, I find. :-)

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  19. That is a good idea to talk with others who have had similar things happen.

    That path in the woods looks like a Little Red Riding Hood path. Love the ducks, and I wonder what other creatures were watching un-be-known to you. :-)
    Nice pencil colours too, I guess you are designing on a graph, or maybejust drawing.
    Best Regards.

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  20. Ah Lakeland Pencils (I think I’ve identified them correctly ) what a joy! There’s something deeply comforting about them. I am so glad you had a good walk, I think that part of the problem is that healthcare professionals can get stuck in a certain mindset, even the older people who have had strokes are very often not the stereotype that they are expecting – I know plenty of 70 year olds who are up for a twenty mile walk and would not care to be patronised by a leaflet full of frail elderly ladies.
    When I was 6 I spent part of the summer in hospital and a the rest of it in a wheelchair because I had HSP and I can still remember how people who didn’t know what I had – and that I would make a full recovery looked at me. We still seem to have the Victorian attitude of ‘poor, frail invalids’ to some extent.
    I’m very glad that you’re starting to manage the tiredness – I think that as recovery progresses that must be one of the hardest things to do.

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  21. The same patronising advice is available to people with M.E/CFS too. I joined a local support group, and on the whole it’s been a good experience. Sometimes it’s such a relief to be with people who you don’t have to explain your crazy symptoms to, and are patient and understanding when you can’t find your words quickly.

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  22. Can’t help feeling envious. I got hit by a car two weeks ago (the driver was in a hurry on the school run and drove down the wrong side of the road). I’ve had major surgery on my leg (my knee was trashed by the weight of the BMW 4×4), am in plaster from toes to thigh and it will be some months before I’m walking again. Nothing to compare with your experience of course but with 3 children all a bit of a worry. Did think, while in hospital, of you, and as I knit. Imagined myself as part of the Kate Davies led ‘knitting with cannulas’ group. Congrats on your continuing recovery, Joan

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  23. I am a newcomer to your blog and I am very inspired by your beautiful knitted designs. It has also been sobering reading about your recovery. Kate, you have many fans here (across the pond) who are cheering you on! It is heartening to hear you have discovered Headway, hope you make a connection and meet others who are recovering like you.

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  24. the condescension while not understanding is infuriating me. i can’t imagine what it must have made you feel like. and also to fear another stroke is taking place when fatigue is occurring — wow, that can’t be good for you. not least because straight talk on fatigue management would have alleviated months of horror. good god.

    are there non-octo peer support groups you can attend where these matters are discussed by those who know?

    so glad you found the guidebook.
    xxx

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  25. I have been a reader of your blog since long before your stroke – I don’t really knit, but loved your patterns, choice of colour and your written word. I have long thought that your experiences of stroke, rehab and recovery together with your inquiring mind, determination and wonderful skill with words should become a book, or something which could be shared in the wider world….it has been an inspiration to those of use who have followed your progress. Perhaps you could fill that spot in the literature that you found missing.

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  26. Thank you so much for the link to Headway. I don’t have a brain injury, but I do have neurological fatigue symptoms, (blurred vision, loss of muscle control, etc) and have not had much luck getting help managing them (being told to just “not work so hard” or “get more sleep” is not management)–the sections you quoted made me feel for the first time in years that it’s a real thing that other people experience, and there might be some way of working with it instead of just trying to pretend it’s not there. I’ll be ordering a copy of the pamphlet–and sending them a donation.

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    1. Yes, some of the ‘help’ I’ve had has, on occasion, tended to rather increase my frustration. It isn’t just about being tired or needing more sleep! The pamphlet is straightforward and commonsensical, and it really has helped me. It includes a ‘further reading’ section which looks quite promising.

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      1. Kate (and anyone else reading this who has suffered a brain injury), I’m delighted that you’ve found Headway at last but appalled that you hadn’t discovered them earlier. I’d assumed you would have known about them or I would have passed this info on to you months ago. Several of their leaflets, including this one, were a great help to me (in contrast to the complete absence of help from my GPs). They also have several local support groups in Scotland. My injury was very minor compared to yours but I am still living with the effects a year later. Please have a look at http://dancingbeastie.wordpress.com/2010/12/10/something-on-my-mind/ if you are interested in comparing notes at all – though mine was a traumatic brain injury so perhaps not relevant to your own experiences. But I must say again that your eloquence on the subject of brain injury in general has been a lifeline to me over the past lonely year.

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  27. I believe that your posts here concerning your stroke would likely be quite the update to their pamphlet. Your writing is so clear on the subject…and definitely focused on a young, active person dealing with the injury. How many more like you are out there without the language you possess to get the point across?

    Write it – the book, the pamphlet – just write it.

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  28. Your pictures have really whetted my appetite! I have a whole week of holiday booked in Edinburgh in June. I can’t wait! I’ve only visited for a few days at a time before,and fallen in love with it every time.
    Thinking of the leaflets etc, it seems to be so difficult for anyone,ever,to get the approach right. Everyone is so different,but I agree that very generalised,and often patronising,leaflets are the worst.My other half was given one when he had a period of mental breakdown/depression. It scared the daylights out of me,because it sounded as if I was going to be married to an unemployable misery for the rest of my life. In fact,he made a full recovery,and went back to his old job. We both had to learn to approach things differently,and not repeat the overwork that caused the problem,but the end result was a better lifestyle than we’d had before! On the other hand,things that were really helpful to him/us,may well have been irrelevant or useless to someone else.
    I hope the encouragement from that leaflet,and any other things you decide to follow up,will mean you can look forward to many more days like today.

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  29. So good to hear that you were able to find something useful. I can only imagine your frustration – and then to compound it with a lack of appropriate information! Your positive attitude & focus to move forward is to be commended.

    Thank you for taking us along with you on another of your strolls. I’ve had Edinburgh on my mind since your last post about it. Since air fair has skyrocketed, I must be satisfied to be there vicariously through you.

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  30. Well done, Kate. Another milestone achieved and, more importantly, enjoyed. I have a couple of friends who are involved with Headway in Edinburgh and they have found it amazingly helpful.

    Edinburgh is looking good – and so are the pencils!

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  31. Oh I hate those silly pamphlets, too. They gave me one for “Managing Stress” after chest pain sent me to the hospital at age 30. It had admonitions to “relax more”. How helpful. Who would’ve guessed?

    Whoever writes these things ought to be sent to a room and forced to read their own writing until they swear never again to write vapid, condescending pamphlets.

    Strength to your sword arm! :)

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  32. Needled: I’ve been tempted to write you a few times but could not resist this time. I, too, had a stroke not caused by underlying cholesterol or other health issues. It came out of the blue. I was 56 and very active. I didn’t then and do not now consider myself and old person. This happened in 2004 and I have had fatigue problems since and have recently been experience dizzy spells scaring me into thinking I’m having another stroke. I’d like to acquire the little book on this day’s posting. Do you know where I could get it? I live in Denver, Colorado, USA – hiking abounds here. I’m also an avid knitter and novice spinner. “Bless your heart”, as they say in the South USA.

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  33. PS Brain injury awareness week is 9th to 13th May, with “Hats for Headway” on the Friday 13th. I’m organising one such event at our local hospital. All we have to do is wear mad hats and try and collect as much money as possible for Headway.

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  34. Oh I’m so glad you got out in the sunshine :) And that you got that pamphlet too. I was lucky because I was given a booklet on SAH by the specialist nurse at hospital, and it covered everything from what happens, what coiling and clipping are, and the after-effects, including fatigue. It encouraged me to get my family to read it, which I did, and I’ve been so grateful for the help. You can get it online at the Brain & Spine Foundation website. What also helped me was finding a forum set up by an SAH survivor called behindthegray.net. Talking to other people who’d been through the same thing was amazing, because all of a sudden here were all these people who could say “I’ve felt that way too”. We’re not a closed bunch – other stroke survivors and people who have a relative who has suffered a brain haemorrhage are also members. I like it because it’s not a depressing forum, but there are some very positive people there.
    You’re right about most stroke literature being targeted at older people, but Different Strokes are a charity for younger stroke survivors. I am in the process of setting up a Different Strokes group in my community…..
    Wishing you better days, Jen :)

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  35. Oh, HUGE congratulations on your walk – I know the excitement – the euphoria…
    Onward & upward, with the wind & good friends at your back.

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  36. I can’t imagine, as a young woman, how frustrating it is to be treated as though all stroke victims fit only one model — old, overweight, and slightly dithered — though this is equally insulting to the elderly, as well). But for you, as a young woman dealing with some classic and some not-so-classic results of your stroke, it must provoke a kind of rage to have so little useful information provided on what to expect or how to handle it in both the short- and long-term. Glad the pamphlet is proving useful; hopefully, if you contact the center, they may be able to offer you additional insights and guidance.

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  37. Hi Kate! I am happy to hear you widened your circle to the city centre! I still feel very inspired by your blog – so I just wanted to say hi again. I would definitely want to know more about what they tell you how you can manage your fatigue. Sounds very interesting to me.

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  38. Such a lovely walk! I know exactly what you mean about the ‘that is not me’ situation: I have recently been diagnosed with diabetes type II, and I’m fed up of being addressed as an over-60s, sedentary, and severely overweight person. I’m none of the above, and recommendations to loose weight and be more active are unhelpful in learning how to deal with the illness and its consequences, or with the ‘why me?’ phase which I’m struggling with.

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  39. Sounds like a good idea to get in touch with Headway. They may have support groups which despite sounding icky it can be helpful to talke with people who have gone through the same thing.

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  40. Thanks for the view of a very familiar to me Edinburgh Street……lots of memories of Dundas St……..walked up and down it for a good 6 years or so!
    I’m very excited for your accomplishment too….I’m sure it was very satisfying!

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  41. What a refreshing walk! We have buds on the trees and the grass is visible. Thank you for the photos! Your small steps in your journey are becoming longer strides. I can imagine how good it felt to walk downtown. I love the photo of the pencils, BTW.

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  42. good that you had a productive walk that did NOT overwhelm you. and you got beautiful pencils! a walk for art supplies and the ability to use them after is victory, indeed.

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  43. Good luck Kate. Reaching out to others who have had similar experiences can be very comforting and offer new insights. I have no doubt that you would bring a great deal to any conversation. Thank you for the lovely views today.

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