A blogging friend over at The Walking Allergy made some interesting observations about illness management on a recent blog post of mine, and it’s made me think about my own experience. Pacing is the best way to manage chronic illnesses like EDS and M.E. but it’s not always achieveable and when it’s not should we ever push through our symptoms? The rest v activity debate is complex and is a very very fine line to tread.
I have to manage my EDS and my M.E. in different, often diametrically opposed ways, which makes for an interesting life. I am in pain from my EDS every second of every day so I have to push through it otherwise I would never leave my bed. However, I don’t push through blindly – I strap and brace injuries so as not to aggravate them and I only use my TENS machine to mask chronic pain signals, ie the type of pain with no obvious cause and which I simply have to live with – it would be madness to mask and ignore acute pain signals. Eventually though there gets to a point in the day where the pain ramps up to such an extent that it forces me to stop and rest and the timescale for this happening is different every day. Some days it gets to lunchtime and my back is screaming at me to lie down, other days I can get to the end of the afternoon before my body imposes forced horizontal-ness. Sometimes I can rest for a couple of hours then get back up and carry on, other days that’s impossible. Some days I can walk, other days it’s just too painful.
The fatigue from my EDS is something I admit I totally ignore. I have an extremely busy life and there are things I have to get done every day no matter how exhausted I feel. In fact, it’s only 7.45am and I am already so tired it’s like I’ve never been to bed. But today, as every day, I have stuff to do so I just have to push through the tiredness and crack on. It’s really hard, but do-able.
The “fatigue” from my M.E. is in a totally different league. When I was severely affected I didn’t get dressed, or clean my teeth, for 4 years because I was simply unable. I had so little energy I had to use it for really vital things like breathing and crawling on all fours to the loo. However I lived alone and only had help for one day each week, so staying in bed wasn’t an option. If I wanted to survive I had to get up and I had to make meals and drinks, I had to pee and poop, I had to bathe once a week (because if I didn’t I got crazily itchy), I had to answer the doorbell and the phone, I had to write shopping lists, I had to pay bills (no internet banking then!), I had to arrange tradesmen when my boiler broke or my roof leaked, I had to put the bins out……….and all the other stuff we have to do in order to live. The consequences of this activity were legend – I would have a 10 minute chat on the phone and literally puke with exhaustion for the next hour. I could make beans on toast for lunch then be so ill from the effort I couldn’t actually eat it – I’d have to rest for an hour first, then consume it stone cold. I would write a shopping list for my Carer, then have a seizure from the effort of so much thought. At the time, however, I had no other choice than to push wayyyy past my boundaries.
You would think that this would make me much more ill than my peers with severe M.E., and maybe for a time it did. But, and it’s a BIG but, I’m the only one in my M.E. circle from the early 1990s that has made any significant recovery. So I ask myself why. It is because I didn’t have the option of staying in bed? No matter how ill I was, and I genuinely was so ill I nearly died, I had to make myself get up and do things. If I couldn’t walk I crawled. If I passed out on the kitchen floor I had to damn well get back up again and finish making my breakfast, then try and actually eat it. Did that make the difference? I have no idea, but it’s the only thing which appears to separate me from my peers, who were all cared for by spouses or parents and had the option of remaining in bed.
So the question remains – to push, or not to push, through your boundaries? It’s individual for all of us. I live in a permanent state of pain and exhaustion so I have to push to some extent or I’d lie in bed forever staring at the ceiling. But you have to know when to push and when to rest and that only comes with experience. There are times when I’ve had to push on regardless and it’s been detrimental, no question about it. There have been other times when I wonder whether having to push on regardless has actually been beneficial in the long run, regardless of the fact it was detrimental at the time – I’ll never know the answer to that.
Of course, our illnesses change over time and I’m as sure as I can be that in the future pushing through my pain will become impossible and I will become both wheelchair dependent for walking and carer dependent for cooking (bearing in mind I can no longer eat microwaveable ready meals as I did when my ME was severe due to my Mast Cell Disease/HIT). My boundaries are ever changing and living within, or without, requires constant reassessment and daily choices.