Following on from my post about pacing, I want to talk about boom and bust. I have a lovely friend with severe M.E. and on her Facebook page recently she wrote (and I’m paraphrasing): “The differences in what I can do physically and mentally day to day are shockingly drastic. The other day, I folded clothes while talking on the phone, ordered food online, hoovered one room (for the first time– I was having a good day), did some light cooking, wiped down some surfaces in the kitchen, carried a tall lamp from my upstairs bedroom into the living room and watched tv with my husband — all without getting neuro symptoms or taking a nap. Today I’m back in bed before even having breakfast and I had to rest in total silence and darkness for hours before even being able to write this because my brain is struggling in molasses”.
I love her to bits but I did want to grab her and shout arrrrggggghhhhh really loudly in her ear’ole 😉 This is a classic case of booming and busting. In other words, doing all sorts of activities on a “good day” then wondering why you’re poleaxed for the week that follows.
If you had triple heart bypass surgery you wouldn’t expect to get out of bed the next day and hoover your lounge room carpet. You would take things easy, gradually doing little bits and gauging your symptoms. If your pain got worse you’d realize you’d over-done it and cut back, taking months to gradually build up your strength and tolerance to activity. Yet people with M.E. think that the second they wake feeling even marginally human they should be able to go about their business like they’re not sick at all, then wonder why they feel like they’ve been hit by a train as a result. It’s a bit nuts when you think about it logically.
I speak as one who, for the first 6 years of her illness, thought that one day I’d just wake up better and be able to resume my life like nothing had happened. I was in complete denial that I would never be well again and that my old, healthy and active life had gone forever. I was no longer the person that I had always been and when you finally realize that you seriously want to slit your wrists. However, your old life is dead and just as with any kind of grief you have to work through pain, anger and despair before coming to terms with your situation and finding acceptance. It’s hard to do this alone and that’s where a trained professional may be useful.
After you’ve worked through your grief and denial and finally accepted that you have a new life you have to figure out the rules of that new life. This is where pacing comes in. I’m no expert and can only talk about my own experience, but I did get myself from being almost totally bedridden for 10 years to being able to live independently and I think routine was the key. I had the same schedule every single day. I don’t care if I woke feeling like Usain Bolt I stayed in bed and rested, doing no more on a good day than I did on a bad day. Sounds easy doesn’t it? But you have no clue, like seriously no fucking clue, how hard it was. When I hadn’t been out of bed for three months and suddenly woke feeling if not exactly well at least like I wasn’t dying and not being able to use that precious day to do something other than staring at the same four walls of my bedroom – the same walls I’d stared at for the entire previous year. Or to chat to my best friend for a whole hour on the phone after not speaking to a soul all week. Or to walk to the shops and be surrounded by people after months of total isolation. Or to go out to dinner when I’d lived on cereal and frozen meals for one for the past six months. The temptations faced by Jesus in the desert are nothing in comparison to the temptations faced by M.E. patients who are having a ‘good day’. However I thought of my schedule as rehab and, just like the bypass patient recovering from major surgery, I needed to allow my body to heal before gradually increasing my activity levels.
The worst part is that, despite spending years solidly pacing and denying myself any kind of pleasures followed by thirteen years of continued pacing and only allowing myself the odd pleasures, I am still not well. Not by any stretch of anyone’s imagination. In fact, I don’t know of any patients who have had severe M.E. that have fully recovered, which is a bitter pill to swallow. I have no more energy than any other M.E. patient. What I do have is stamina and it’s that which allows me to do activities. I also no longer wake each day feeling like I’m dying, or so sick I wish I were dead (and I did both for nearly a decade). I still have pronounced symptoms including brain fog, feeling fluey, pain, muscle weakness, insomnia, nausea etc, but they only stop me doing things if I don’t stick to my pacing schedule and, on the rare occasions I take a calculated risk and over-do it the exacerbation in symptoms only lasts a few days not several weeks/months like they used to.
I still have a glass ceiling beyond which I can’t reach without risking a relapse. I live a very structured life. I haven’t been on holiday since 1996, not because I’m unable but because my body would rebel. It’s unrealistic to live 50 weeks of the year in gentle, quiet, routined isolation then expect my body to cope with planning, packing, travel, vibrations, motion sickness, changes in climate, food, water and routine. Not to mention stupendous amounts of stimulation in the form of noise, people, bustle, chatter with my travelling companion, scenery, things to do and the utter chaos of the outside world. I wouldn’t expect a triple bypass patient to cope with all that the day after surgery and I don’t expect my sick self to cope with it either. Ditto going to the cinema. Or out in the evenings when I’m at my lowest ebb in terms of stamina. Or reading. Or cleaning the bath. Or hoovering. Or painting the Utility room, even though it desperately needs doing and my pre-illness self was perfectly capable. And 1001 other situations I still avoid like the proverbial plague.
M.E. patients all want to get better but we want a quick fix. A diet, a pill, a therapy which is going to instantly cure us. Most can’t accept that currently the only way to improve our symptoms is years of dedication, hard work, deprivation and isolation. And to be fair you can’t blame them. But this is the hand we’ve been dealt and we have to be savvy about it and make a life that is as good as it can be.
I am never going to be well and able to do the things I could pre-M.E. and I have to make a conscious effort not to dwell on that or the grief, even 23 years down the line, would overwhelm me. This is not the life an energetic, intelligent, bubbly, passionate, independent, hard-working woman would ever choose and I fought against it for years, with every ounce of my character, strength and determination…………and lost. M.E. beat me every single time. So I had to call a truce. Had to give up some parts of my old life in order to keep some parts of my new life. And at least I now have a life, when for ten years I had none.