Following on from one of my recent posts, I thought I’d share my experience of pacing. Managing energy expenditure is important for many EDS patients and absolutely vital if you have M.E.. I’m going to talk from an M.E. point of view, because my EDS tiredness and my M.E. “tiredness” are leagues apart and respond to different techniques but I hope EDSers will still gain insight from my ramblings!
When I first got M.E. 23 years ago nothing was known about the disease and there was zero advice on how to manage the condition. I had a very busy and active life, including a full time job with a two hour commute, being in the middle of renovating a three story Victorian town house, hobbies (aerobics, horse riding, weight lifting, tennis), friends, a boyfriend and an active social life. When I first had symptoms I struggled on at work for six months until I became so ill I couldn’t get out of bed in the morning, let alone do a ten hour working day. Looking back, this was my first mistake. If I knew then what I know now I would have stopped work immediately and rested.
Having been forced to give up work I had a lot of boring time on my hands during the day, so for the odd few hours I had some energy I thought it was a good opportunity to catch up on all the jobs that needed doing in my house including pulling down and replacing the ceiling on the landing and getting on with doing up the top floor of the house. I felt horrendous but I was a really hard working, motivated young woman and illness wasn’t going to stand in my way. Mistake number two.
I had no intention of letting my disease interfere with my social life either, so on Fridays and Saturdays I’d lie in bed all day feeling like death warmed up then at 6pm drag my leaden body out of bed, shower, do my hair, put my slap on and get glammed up, ready to go out with my friends or boyfriend for a meal, to the pictures or out round town. It used up my energy reserves for days but I needed to keep up the pretence to myself that this sickness thing was just a blip and wasn’t going to stop me living my life. Mistake number three.
Of course, I got more and more ill and my relationship with my boyfriend began to suffer. Scared I was losing him I agreed to go on holiday to Kenya and to cut a long story short this is where I got Meningitis and ended up nearly coming home in a coffin. I lived, but developed very severe M.E. as a result and lost my boyfriend anyway. Humongous, life-changing mistake number four.
Now I didn’t have the choice of pacing or managing my energy. For the next four years it was all I could do just to breathe in and out and blink my eyelids. In fact, I went through a stage where I was so weak I couldn’t even blink my eyelids and my GP said that ideally I needed to be on a ventilator to give my lungs chance to rest. Instead I wasn’t even hospitalized and just left to lie on my own in my bed without medical care for 23 hours a day because back then M.E. wasn’t treated or taken seriously and on the odd occasions I did see a Consultant it was a psychiatrist not someone who could actually physically help me.
After four years I came to terms with the fact that my old life was gone forever and even if I was going to be bedridden for the rest of my life I was still alive and needed my days to be as good as possible. And this is when I started pacing. There was still no advice on it, I just instinctively knew that my body was in total disarray and I needed to do something to help it to stabilize. So I devised a schedule, breaking my day up into activity and rest (and by rest I mean lying down in a dark room with no radio or mental stimulation). Make and eat breakfast, rest for one hour. Talk to a friend on the phone for 10 minutes (I had a timer), rest for one hour. Make and eat lunch, rest for one hour. Have Mum visit for 10 minutes, rest for one hour. Be on computer for 15 minutes, rest for 90 minutes. Eat tea, rest for one hour. Watch tv for half an hour, sleep (or try to!). I’d have a bath once a week when everything else had to go on hold because bathing floored me. And on Wednesdays I employed a nice lady to clean my house and do my shopping, so had extra rests that day because just her mere presence in the house killed me.
I kept this schedule up for an entire year with no improvement in my health whatsoever. Everyone moaned about it. My Mum struggled to come at the time I needed her to, my best friend wanted to chat on the phone longer than ten minutes, friends I’d made online wanted me to reply to their emails or chat on a forum I was on, and I was so bored when resting I was scared I’d literally lose my mind. But I stuck to my guns and carried on with my plan. And slowly, slowly it started to work.
After about 18 months I started to see symptoms I’d had for years lessen. I started to feel like I had a little bit of stamina, if not energy. And this carried on for the next 6 years with baby step improvement. I was able to increase my activity times and decrease my rest times and eventually made it out of bed, if not really out of the house 🙂
A decade later I am now moderately affected by M.E. not severely and can have some semblance of a normal life but only because I still pace. I’ve discovered that I have most mental energy and clarity first thing in a morning, so that’s when I do all my blogging, computer stuff and paperwork. I have most physical energy between 11am-3pm, so that’s when I visit my parents, do my shopping and take the dog out (paying someone to take him out first thing in the morning when my physical energy is low). I crash every afternoon, so am in bed from around 3.30pm to 7pm. I no longer have to lie in a dark room, but if I want to nap I do, or I listen to a talking book, or maybe check Facebook. Evenings I have another spurt of mental, if not physical energy, so I stay in bed but tend to edit my photographs at night or email friends.
I still only bathe twice a week because I still find it absolutely knackering and I lose a week every month to my period, when I’m in bed much more and can’t do much of anything else (which is why I’m finding peri-menopause difficult, not knowing when Aunt Flo will arrive). In the winter I go to my Camera Club one evening a week, but make sure I rest more during both that day and the next. I also meet my bezzie for lunch once or twice a month, but again this involves planning my energy, resting more the day before and two days after. If I’m having a crap day, which I usually know the second I open my eyes in a morning, I make sure I use my mobility scooter more that day, sit with my feet up more, or lie down more instead of sitting – all things which help conserve energy. Planning and pacing have become second nature to me and are still absolutely vital in keeping my M.E. stable.
Pacing doesn’t just involve mental and physical activities though. I’ve had to change who I am as a person. I’m inquisitive and passionate and when I was well I used to get involved in debates and follow politics and was active in various charities, but all that has had to stop. Emotions, be they good or bad, kill me. Laughing is exhausting, arguing is more so. My best mate also has M.E. and when we meet up for lunch we inevitably start discussing the state of the world, but after twenty minutes we both decide we need to stop because we’re absolutely exhausted (I can literally see the colour drain from my friend’s face). I have to curb my naturally bubbly nature and try to keep my emotions on an even keen, which to be honest I finally really hard! Stress is an absolute no no and can have very serious consequences for my health, which is why I don’t tolerate bullshit here on my blog or in my private life. There are no second chances – you stress me out you are not in my life anymore, end of story. It’s a matter of survival.
Sadly there are things I can no longer do no matter how hard I try. Exercise, obviously. And read. I’ve always loved books and they saved my sanity as a child, but reading is so exhausting and taxing it’s no longer enjoyable or feasible – I miss books more than words can say, though talking books fill the gap a little bit (and are massively more expensive 😦 ).
Of course, there are times when you have no choice but to push through the energy barrier, eg. to attend a wedding or funeral, or if something goes wrong in the house, or if the electric goes off, or if one of my parents is sick, but during these times everything else goes on hold. I’m not on Facebook, I don’t blog, I often don’t bathe at all, I don’t keep up with the washing and ironing, I eat solely out of the freezer …….something has to give. Nevertheless, crises or extra events always, always rob me of energy and I then need a period of extra rest and recuperation afterwards to regain my equilibrium.
Statistically, children who develop M.E. are more likely to recover than adults and, while this may be partly down to the fact that their immune systems aren’t fully developed, I personally also think it’s down to the fact that they can rest fully. They don’t have to worry about finances, don’t have to cook, shop, clean or do laundry. Don’t have to apply for welfare benefits or deal with leaking roofs or broken boilers. Other than being socially isolated they don’t really have huge worries or stressors and this does tend to improve outcome (though of course sadly not for all kids).
I often see questions about pacing from newly diagnosed people on the ME Association’s Facebook page and think it’s pointless replying. When you’re first ill there is no way you are going to pace effectively. You haven’t twigged that you are going to be ill for years and that your life is changed forever. Haven’t realized what’s involved or the extend to which being chronically ill is going to change not only you but everyone around you. That knowledge and acceptance only comes with time and experience.