I have learnt that rest means so many different things to so many different people, and it wasn’t even till I learned that I will probably never actually have any physical rest this side of Heaven that I realised that for many people we simply have to take whatever rest we can get and be at peace with that. For some people who have no choice but to work long, hard hours that may mean snatching bits of sleep here and there and knowing that that is all they will get for the foreseeable future.
Rest for me on the other hand is very much at the other end of the scale to that, as I learn to accept that I have to spend a lot of time resting, but that long hours in bed will never bring me the rest that I need, …but if I don’t do that then I will be back to where I was five years ago when I wasn’t allowed to leave the house other than for doctor appointments (of which there were so many) for nearly a year. It was an incredibly frustrating and painful year for me as my body shut down, my voice ceased to work AT ALL (I couldn’t even whisper) and my brain was in so much of a fog that it was hard to think clearly …and yet it was used to running on overdrive for the past few decades and didn’t know how to slow down either. I felt like I was going mad at the same time that I craved sleep and rest and had no energy to do anything but was in too much pain and head spin for any decent rest.
In the end though, I learned to slow my mind and the enforced rest worked, …it gave me a level of functioning again that was never quite what I was used to but I was able to find a middle place of taking care of my energy and still living life somewhat close to “normal” if limited.
But that was five years ago and it was before I deteriorated even more but more importantly it was before diagnosis. We understand so much more now and we know why complete rest is not good for me.
I have been home for five days now, from nearly four weeks overseas, and while we are both hugely proud of ourselves for doing such a brilliant and highly successful job of travelling while keeping my limits in mind, I still came home and crashed. No matter what we do there does not seem to be a solution to jet lag and the toll it alone plays on my body. We have jet lag down pat in so many ways and we are really good at tweaking the meds so that we both sleep most of every night after a time zone change, so there are no wide awake nights looking at the ceiling and we manage to stay awake really well during the day, but my body still crashes physically and nothing short of a week in bed fixes that.
We have decided that it’s worth it, and we can certainly manage a week in bed for me, but we have also learnt that we need to be very careful of a week in bed. We have learnt the hard way that staying IN bed (or couch) for a whole week is a recipe for disaster. As I sleep, and especially any kind of a drug induced sleep, my body completely relaxes as of course we all want and need our bodies to do, but that then slackens my ligaments and I wake up very very sore and with more than a few joints out of place, usually my jaw and hips but often also my spine and my knees. It doesn’t help when the weather is also cold.
So bed rest is great, but it also means that I wake up in a LOT of pain and I slowly lose more and more muscle strength over the week which then leads to other issues and the whole thing escalates. We were away for three weeks in March and it took me six weeks to recover and the level of injury and the pain involved meant that it simply wasn’t worth it … and yet I would still have done it again as I need to see my family, however, there needs to be a better way!
So this time I came up with a slightly new plan, and that was that each morning as I wake up stiff and sore and deeply depressed (one of the side effects of the sudden isolation and constant pain), I would force myself to get up and move for two hours. Just gentle movement, …but get out of bed and make those muscles move again, the blood pump around my body, and the sense of doing something worthwhile as I do simple tasks like unpacking the suitcases, sorting out the studio (which had never been unpacked from the move 15 months ago) with absolutely no pressure to finish anything. The idea is two hours of slow full body movement even if that means that all my brain frog can cope with is walking round and round the garden in the sunshine for some of those two hours.
It also includes putting some soup on to cook (pre-chopped everything of course, I’m not safe with knives in this state, as it is I dropped and broke a glass making porridge on Tuesday) so that I am eating well and feeling that I am contributing something, that I can just leave it there to simmer the rest of the day without thinking about it. I air out the bed and open the windows even though that means that the bedroom is really cold now that it is winter in the southern hemisphere, but the curtains are all opened too so that I can see the garden. Then I heat up all four wheat bags and I prop up my pillows and put on something warm and fluffy, and beside the bed I set up a supply of chocolate, hot tea, soup, and lots of salty food, …and whenever anyone offers to bring anything I force myself to say yes please to french fries. We have learnt that they make the biggest difference to my recovery, both for the salt and the potatoes and they are kind on my raw mouth and keep my calories and energy up.
My brain usually can’t cope with writing or reading but I love good documentaries and so I spend the rest of the day and evening in bed, ….warm, fed, “exercised” and learning… knowing that I am restocking the spoons, recharging the batteries, and being gentle on myself. Self care has been the hardest challenge as I had absolutely no sense of what that meant my entire life and it took three years of therapy to even begin to know what I need. But I am learning.
And so for me this week, this is what rest looks like for me, and as I wake up to day six I am feeling quite good, able to think, write, and now I will go and do my two hours finishing off the studio before I settle back to bed … actually, I take that back, I tried to do TWO things yesterday (the morning two hours AND brave going out to BookClub in the afternoon which my soul really needed to see much missed friends) and I paid for it dearly last night. Tonight we are going out with friends so I will spend only half an hour getting the muscles going this morning and then it’s back to bed till we go out for a gentle dinner tonight ….see, I am learning slowly…