Tom has returned. His work was awarded a prize by the British Society of Immunologists (Huzzah!). Success abroad was not matched by that at home, however: the only sense in which my days alone might be said to be successful is that nothing seriously went wrong. By Tuesday I was absolutely knackered – I got out of the shower and realised I didn’t have enough energy left to put my clothes on. I just had to climb back into bed. And things hit a very low point yesterday when I found myself stumbling zombie-like around the park in my pyjamas. (Bruce’s needs are simple, but they are needs.) The experience of the past few days has made me reflect on many things:
1) It is quite remarkable how many energy-sapping actions are involved in the basic business of getting through a day.
2) Things must be extremely difficult for those in similar situations who don’t have someone around to take the slack off.
3) Tom really is some sort of star.
4) Getting around on frozen ground with a wonky body is tough.
5) I am still a very long way indeed from being ‘well.’
This last might seem a disheartening realisation, but in some ways it is a useful one as well. As a normally productive and busy sort of person, there have been many times over the past month or so that I have berated myself for doing too little. Sometimes I really need to remind myself that the reason I don’t seem to be doing very much is that I don’t yet have the energy to do it. Hey ho.
Outside, things are starting to thaw. I need a little time to recoup, but I’ll be back very soon with fishy photos and a pattern.
KDD & Co 
Kate,
I love your blog, and it makes me think of another artist, and also my painting teacher, who had a stroke a while back, and continued to make paintings, using her left side because her right side became paralyzed. She is also a staunch disability activist here in Berkeley, CA. Here is a link to an article about her (and it’s on her website so you can see her work): http://www.katherinesherwood.com/sherwood/articles/wallst.html
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Kate – What you write is true, as are the words of everyone who has commented above. You are a star, Tom is a star, and together you are making a beautiful light in the world. Sometimes the most beneficial thing we can do for ourselves is to sleep and rest. And it can be glorious to have stretched so, take time for recovery, and later see (and feel) how much progress has been made.
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Do you know about Spoon Theory? It is a great way of describing the energy required to do the things that you didn’t know required energy. It can also be really useful for explaining to other people who don’t realise how much energy these things take!
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/
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Well done to both you and Tom. In my mind you are both stars…. and so is Bruce.
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Congratulations Tom! As for the tiredness – you did the right thing going back to bed :) Did you see my post about pacing recently? I’ve felt so much better since I went to fatigue management with the OT woman, even though it just seemed like common sense and I wondered why I hadn’t worked it all out myself… I must say, I don’t do three mile hikes yet, but I can manage the shopping centre for longer than before, as long as I stop for Starbucks. It’s medicinal you know. Keep smiling!
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I have read and loved your blog for a very long time, but have never commented. I find both you and Tom to be absolutely amazing people. You both possess such special qualities that only people who have loved each other deeply and cared for one another in all circumstances experience. So many of us don’t achieve this level of living for many, many years. You have grown so strong and both of you have adapted with such grace to the life you have been given. In less that a year you have been able to live on your own, work, care for others and truly enjoy so many experiences. It is the confidence that is shaky, not you. Believe in yourself and understand how far you have come. Fear is a dreadful demon that sneaks in when we aren’t vigilant (or exhausted or not feeling well; it takes a great deal of energy to keep that fear away at times). We who have come to “know” you from afar have confidence in you and your recovery because of the love that you possess. Emerson said that “Self trust is the essence of heroism” and you certainly are my hero.
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i hope, when you were staggering around the park in your jammies and feelthy macintosh, that you flashed as many dirty old men as possible.
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Congrats to Tom on the award. And thank you for sharing your experiences. Reading about your recovery helps me to be a little more realistic about my expectations for my own heart and its flippity floppity ways.
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Congrats to Tom! and you!
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Hey, no one died. I call that a win! It’s only by hitting the edge of our limits that we discover where our energy is best spent. I go through spates when I can’t shower for a few days and getting dressed is just impossible. It’s no fun but I’ve given up feeling bad about it. It is what it is.
Mucho congratulations to Tom on his award.
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Congratulations to you two ! You may be doing less than you wish and that is undeniably unpleasant, but you are certainly not doing too little – many of us accomplished a lot less during the past few months, whereas you’ve been writing beautiful and enlightening posts, interesting articles for magazines, wonderful patterns to help us imitate your beautiful knitting.
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Well done on your steady steps towards where you want to be. And how lucky Tom is to have you, who, despite what you are dealing with, celebrates him and and his fabulous achievements so joyfully!
As others have said, it is a great thing to learn our limits and how they relate to our capacities. It can be a very grounding and strengthening thing.
xx
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What a nice boost for Tom – congratulations! From the Great White North it looks like you folks are doing well – as is usual in life some days are better than others – you did make out fine on your own – be gentle with yourself – sounds like you have been busy since you are teasing us with a pattern :)
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Well done to Tom -you must be very proud of him!! In a recent post I said I had had a lazy day. I had a comment along the lines of what planet was I on – I did more in a lazy day then she did in a month …….. so, many people would love to achieve what you think isn’t much!! I know you will have been told this a million times, but – just go with the flow (and I’ve said that a million times to Malcolm when he’s swearing when stuck in a queue of traffic!!!)
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As Mercy says – part of the effort involved was knowing that you were by yourself for a while. Apprehension, however subliminal can ve exhasting.
Well done you. PJs in the park are nothing – but don’t try going to Tesco’s in them – they get upset!
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Although it seems awful to compare having a baby to having a stroke, I can really sympathize with what you are saying! My baby is 12 weeks old, and I went back to work last week. Before that, I was with him all the time, and there were days where I didn’t get out of my pajamas until he went to bed at night, and by then why bother really changing out of old PJs into new ones? I started to feel guilty about not doing more–I usually and VERY efficient and busy around the house–laundry, dishes, etc etc. When I went back to work my husband stayed home with the baby, and I feel better about myself because HE is also very shocked at how much work it is simply to care for a baby. Now we are a bit gentler on ourselves with expectations…You seem to be extremely productive and proactive to me, and I think you should be proud of yourself and how much you seem to get done!!!
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hey, it is just the first time. Half the effort was probably just the oddness of being by yourself for a long time and knowing it. Congratulations on getting out the other side, and still being productive in the mean-time.
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Hi Kate- I just discovered your owl pattern on a woman standing next to me at a school spaghetti dinner in Ithaca, NY (USA). And so you will see I bought that pattern and the turnip tam. I am devoted to tams and can’t seem to stop making them. recently had a show here in town. Some of them have words on them. Things said to me. And am currently doing one and adding beads.
Here’s the url of my blog with the tam post: http://meredithfsmall.blogspot.com/2010/09/tam-time.html
I know I gotta sit and chart them and get them on Raveley. Anyway, hello form a fellow Fair Isler….
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My thinking is right in line with commenters Maxi & lizzi. The fact you made it through the time with Tom gone is huge.
I had just hung up the phone before checking this blog. Had a quick chat with my mother who experienced a stroke in mid-October. She bemoaned that fact that it’s taking so long to make any progress. And then amazed me by casually saying that she’s now walking without her walker! I would think that your improvements are there — perhaps hard to see from your side of things, but they really are.
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You did really well – sometimes all you have to do is get through the day – and you did!!
L
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You are making great progress! You managed to be on your own for the first time and taking care of yourself and the dog. I call that success!
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Sorry to hear your time alone was so energy zapping, but the body does I believe, let us know very plainly when it needs to do nothing much.
Try not to be so hard on yourself, I have on more than one occasion, dropped son off for college wearing pj’s, just so I can go straight back to bed on these freezing mornings.
Well done to Tom and you.
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I’m sorry to hear you had a hard time of it while Tom was away. Glad nothing went wrong, though. I hope you feel more energetic soon (and tell Tom congrats! for his prize)!
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Congratulations to both of you. The perspective from Philadelphia makes it appear you have climbed an eighth hill. Perhaps it is the earth’s curve skewing things but I doubt it.
You two are just amazing.
m.
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I am glad Tom is back with you, that you shall have to endure no further pyjamas-in-the-park-horrors, and that Tom won a prestigious prize for his work.
HUZZAH for getting through the tough alone time, too, though. Even though it was harder than you’d hoped, it still would have been inconceivable a few months ago. Plus, I think that being able to make knowledge of one’s limits useful rather than dispiriting is a very particular and hard-won skill. Your wise words re: accepting and being realistic about what you can/can’t pack into the days represent a particular kind of achievement, I think.
It took me several years before I could do anything other than berate myself for doing less than I wanted to when Arthritis made me immobile and exhausted. I was also slow to understand that accepting my Arthritis and it’s limiting realities didn’t mean giving up on getting better; it just meant learning how to use fewer spoons (to use the popular metaphor) in the meantime.
I am most intrigued by that glimpse of crazed porcelain and excited to see the fishy photos x
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Congratulations to Tom and well done to you Kate for managing on your own. Hope you soon recover from all the effort you have put in while Tom was away.
You will have to train Bruce to be your assistance dog!
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This is apparently why some people get dogs – to force them to be active even when they don’t feel like it. In fact, I believe this is precisely how we came to have a dog. Sometimes I hate (strong word!) our dog, because he doesn’t care if we are feeling tired / sick / cold / under-dressed for the weather – he just needs a poo and he needs it NOW! But I do hope yours is better-trained than ours – the last thing you need is to be towed along an icey road at the wrong end of his lead because there is another black lab on the horizon!
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You and Tom are both stars. I am sure that going through these experiences with you has been something of a gift for Tom as well. I am so happy you both have each other.
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We have witnessed your recovery through this blog, so it seems as though you have moved mountains to get to where you are today. I had a flashback to when I came home from the hospital with my first baby, and in the weeks that followed just caring for and feeding that baby was all I did. I had imagined taking art courses while off work on maternity leave! Ended up I usually didn’t get dressed and showering was a major event. Those were humbling days.
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There is a Japanese proverb; fall seven times, stand up eight! x
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I love the way you write “I don’t seem to be doing very much” – I am still procrastinating around writing up my first pattern (there are a few in the pipeline, but the thought terrifies me), let alone publishing one a fortnight, and my blog hasn’t been updated in months… and I have no medical excuse.
It strikes me that we don’t see the things that we do a lot of naturally as actually doing anything. From where I’m reading, you seem very creative and busy indeed. Greetings from a fellow (all rolled up) tortoise!
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Huzzah for Tom! Well done to him (on many levels).
When I look through your blog, it is completely inspiring to me – I am in awe of your determination, and how far you have come. So give yourself a break, be a tortoise for a while.
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