Prior to having rheumatological illness myself I read about the nature of tiredness in this context and the fact that it was a particularly disabling sort of tiredness. However, until you have actually experienced it, it is impossible to understand at any level how paralysing it is. Quite unlike normal tiredness, which even when it feels extreme, can be overcome. As I think I wrote in an earlier post, it is a deep bone aching, nausea inducing phenomenon, often in my case accompanied by a significant fever, presumably an outward manifestation of the inflammation burning away inside. It has been a hard lesson for me to learn how to manage my life in order to minimise this fatigue which compromises my functioning to a much greater extent than even quite severe pain. Professionally, organisation/modification of activities to manage illness related fatigue is usually referred to as pacing…essentially it is about planning sufficient rest time into your schedule to avoidor at least minimise the episodes of severe fatigue and function as well as possible during the periods when you aren’t resting.
For me the concept of needing to rest or indeed consider tiredness in my planning at all was quite alien before I became ill. Firstly, this was because I was a junior doctor before the working hours were reduced so I was always tired and you had to either do things tired or do nothing except work and sleep. I chose to have a life and accept/ignore the tiredness. Secondly I was lucky enough to be born with an excessive amount of energy compared to other people – and this has probably helped me since I have been ill as well as beforehand. However, it has meant that I have had a very bad tendency to try and undertake crazy amounts of things (and/or actual crazy things) as soon as I feel even a bit better – the consequence of which is to go crashing down again. This well described phenomenon is known as “boom & bust” in the pacing world. Learning that my body often can’t do what my imagination hopes it can – in terms of endurance/stamina rather than specific physical disability- has been a very hard pill for me to swallow (tastes much worse than the 39 or so real pills I take daily). However, I think I am finally beginning to manage the balance between rest and activity including planning extra rest if I have enforced draining activities I can’t avoid (which are usually hospital related!!). Before starting Anakinra, my miracle drug, in Feb I probably had about 3 functional hours a day – the rest of the time despite all my best efforts I was either in bed or on the sofa. My functional time has massively increased since the Anakinra but because the Anakinra really felt like the last chance of something offering real benefit I have actually listened to wise (and very stern) words from Jackie (my carer & very valued friend) highlighting that I had a responsibility to myself (and others) to give Anakinra the best chance of longterm success. So mostly (not always, but mostly) I am now very disciplined about having a 3 hour rest scheduled into my day and am still often in bed by 6 or earlier. A mad, crazy, week with time spent sequentially with large numbers of extended family on both sides of our family was very special but by yesterday lunchtime I was on my knees despite having fitted in rests. Indulged by Dad & Svava in their lovely home I then rested/slept for most of the time from 1.30pm until getting up around 9 this morning feeling much better. The indulgence inevitably included food – I rose to drink bubbly, enjoy their photos of their recent Canada trip and eat scallops with sauteed beetroot and a bowl of rich, homemade ratatouille. Not only did I feel better this morning but the fever that was running yesterday reflecting the “bust” after the “boom” was down. I even managed some highly beneficial time in their pool. Gorgeous.
Those sort of special circumstances (aka boom) are worth the predictable (and planned for)subsequent crash (aka bust). What I should aim to avoid however is the bust without a worthwhile boom preceding it. I have also tried to reset my mindset in relation to “resting”. To view it as restoration – a time for meditation, reflection, garden planning,listening to music or radio – a positive time which I am accepting of rather than resenting. I don’t always achieve this yet but at least I sometimes, possibly even often, do succeed at this. And it’s a good excuse to switch my phone off for a couple of hours and remind myself that nothing terrible happens if you’re out of phone contact for a while.
Thanks to Dee & Jeremy for a lovely evening tonight – early start to enable early rest for me (though now writing this because of trouble sleeping!). Always a treat to see them and a simple meal of delicious veggie lasagna and salsa (our contribution) and gluten free chocolate olive oil cake with blueberries and raspberries (Dee’s contribution) washed down by nice wine was not only enjoyed by us but also by Alicia, Gray and Rob. Lovely. Unfortunately, lovely evening finished and in bed the electric mattress is alarming again so I am currently sleeping (or more precisely right now lying) with my inflatable wheelchair pillow in the bed to make it more comfortable. About to poke my snoring husband and try to go to sleep again. Eagerly anticipating a day with a dog walk while Ian and I chin wag away together, followed by extended time in the garden, some food planning and of course a restorative planned rest. Ian is a happy bunny as he has a pass out for a long bike ride/dig as Jud is around to help in garden, and possibly Squires as well. (But mmm, shhhh… wonder whether I could sneak a small reduction in rest time in without my body noticing?????) But no “busting” I promise!