I’ve had M.E. for so long, and have written about it so extensively over the years, that I forget anyone reading this blog won’t know the story of how I managed to go from being bedridden for nearly 10 years to being able to live largely independently, so I thought it was worth a post. Obviously I can’t go into the ins and outs of a 20 year battle in one page, so this is the condensed version, but at least it gives you an idea of the journey.
For the first 18 months of having M.E. I was “mildly/moderately” affected (ie. unable to work but able to self-care and wasn’t housebound). If you’d asked me at the time, however, I would have said I was really really ill – I had no idea at that time how bad M.E. could get. However, after contracting meningitis on holiday in 1996 I became severely, sometimes very severely, affected (ie. bedridden and largely unable to self-care). I was 26 years old.
For 6 years I did everything to get well. I spent frenzied hours researching on the Internet and belonged to dozens of online groups that discussed the latest “cures”, which at that time was ice baths (Barry Sheen the motorbike racer apparently got well from ME doing those) and Ampligen (whatever the hell happened to that? Obviously it didn’t work!). There was not a diet, supplement, drug or therapy (hands on healing, acupuncture, reflexology, massage, osteopathy/lymphatic drainage, cranial osteopathy, chiropracty, electrical stimulation, hypnotherapy, Tai Chi……I was even chanted over by a proper Tibetan monk once) that I did not try. And none of it worked. None of it. OK, some of it helped symptoms a little bit but it was a drop in the ocean. Some of it made me so ill I was hospitalized with what I now know to be a severe mast cell reaction.
After 6 years I had a lightbulb moment and it was this: there is no cure for M.E. If there were a cure there would not be a (conservative!) estimate of 4 million people worldwide with the disease, in every country from South Africa to Norway. And if there ever were a cure developed I would not have to read about it on an obscure internet group – it would be on the 6 o’clock news, the recent hoo ha about XMRV proves that. So I stopped everything, apart from drugs I needed for pain relief, sleep and a few other symptoms such as severe muscle spasms and finally accepted that I was desperately ill and likely to remain so for the rest of my life, because after having severe M.E. for several years the prospect of recovery was zero. And in a strange way this acceptance finally brought me peace. I could move on.
Despite being horrendously ill I was still alive, and I had to find a way of living with my disease, not merely existing. I battled very hard to get the disability benefits to which I was entitled, which enabled me to employ help in the house for a few hours a week. I got Social Services involved and got a wheelchair, ramps, perch stools, kettle tippers and other disability aids for my home including an electric armchair which went totally flat like a bed (I couldn’t sit upright for more than a few minutes without feeling like I was dying). I found simple things which helped my symptoms, eg. wearing an eye mask and ear plugs to sleep in, warm baths with Epsom Salts, my TENS machine. I bought every electronic energy-saving gadget I could find and made my bedroom into a bedsit which I rarely ventured out of. Instead of spending my precious energy researching and being politically active (I left this to healthy people who had the energy for it!), I started to cultivate online friendships with other people in my position some of whom I still have to this day. I stopped mourning my ‘old life’ – it was gone forever.
But I didn’t give up hope. Hope that one day I would be better, albeit never ‘well’. The human body is an awesome vehicle and I wanted to give mine the best opportunity I could to heal itself. For me this involved 3 things:
- Meditation/breathing/visualization & avoiding stress. I didn’t know I had Mast Cell Disease then, I just knew that stress floored me. And I spent most of my time just lying in bed staring at the ceiling as I was too ill to do anything else, so I began to use this time more productively.
- Eating well, including some raw meals, lots of fruit, probiotic yoghurt, juicing with greens, and sprouting my own seeds, beans and legumes – I was obviously ahead of my time with the sprouting, as a recent interview on the Low Histamine Chef’s website is now advocating this as a natural way to increase DAO levels!
- Pacing – the hardest thing I’ve ever done in my life. Ever!
My reasoning behind pacing was that my body was in utter disarray. My nervous system was on constant red alert, I had horrendous insomnia which drugs didn’t really touch, my brain fog was beyond words (literally) and I felt my body needed some kind of stability. So I devised a schedule which I stuck to religiously every day.
I first wrote down meal-times (preparing, eating, clearing away), then other things I absolutely had to do (feed the cat, bathing, household things like paying bills or food shopping), then the times my carer was there (having other people around really zapped my energy) and made up a timetable with set times for all these things.
I then built in activities I’d like to do: watch TV, chat on the phone to a friend, be online, see my parents and gave each one a set time period (10 mins on the phone once a week; 30 mins online daily; 1 hr TV watching in 10 minute chunks etc.) and I STUCK TO THE SCHEDULE, using a timer to ding when the time was up! This did not go down well. My Mum was working full time and had a really busy life and struggled to fit in seeing me in her designated time slot. I went from speaking to a friend daily (which used half my energy reserves for the entire day, crazy!) to speaking to her for 10 minutes once a week. But I was really selfish and stopped trying to please anyone but me – trust me when I say it didn’t come naturally and involved a shed load of guilt.
I kept this daily schedule up for an entire year before I started to see any improvements whatsoever. Did I feel it wasn’t working? Oh yes! Was I bored to the point of going insane? You bet-ya. Did I want to give up? Hell yes! Was I frustrated beyond all human endurance? You have no idea! Did my nearest and dearest think I was mental and try to subtly encourage me to stop? Absolutely! Most people who try pacing give up within a matter of weeks, but for some bizarre reason I kept going. And slowly, slowly, things began to change.
The improvements crept up on me without me really noticing. Then I’d realize that I hadn’t had a sore throat in 3 days. Or I’d managed to get a block of 4 hours sleep. Or I’d come off the phone without feeling like every ounce of energy had been sucked from every cell in my body. My stammer disappeared. My legs stopped jumping with violent spasms. The outbreaks of goosebumps all down my thighs were less frequent.
It took another 4 years to make a substantial recovery to where I am today. I moved house in 2004 and that was the start of a new chapter for me. I can now drive, albeit the car has to be automatic. I can cook a meal (I’ll never forget the first meal I cooked myself again – mushroom & pasta gratin, damn it was good!). I can chat for as long as I like within reason. I can spend hours on the computer. I no longer have severe chemical sensitivities. I can even walk short distances! I am still largely housebound, but rarely bedbound, although I do still spend a large part of my day in bed (but still being active, like watching TV, crocheting or being online). I still have bad times but they pass.
It hasn’t all been plain sailing. I’ve had several really scary relapses along the way (including two hospital admissions) and at the time had no idea if that was it forever or whether I’d “climb back up the greasy pole” as one friend puts it. Luckily for me I’ve always climbed the pole. And I do know that I’m lucky. I don’t take my improved health for granted, because I’m well aware that at any time it could all be taken away again – I’m not ‘cured’, just in partial remission.
During my severe M.E. years I had no clue I had Ehlers-Danlos or MCAD. My pain became severe in 2010 which is how the EDS was finally diagnosed. And in 2012 I had a very frightening time as my MCAD finally exploded, although it took another 18 months to discover what was going on. So now I face new challenges…….but I’m glad I don’t have to face them on top of severe M.E. – that really would have been too much.
I wish I had some magic bullet for you, such as drinking Whale pee or chanting on a full moon, that would help all of you recover from M.E…………but I simply don’t. My partial recovery has been a mix of dedication, finding what worked for me (drugs etc. will be different for all of us – I currently have a friend doing quite well on low dose Naltrexone after being bedridden for over 15 years) and pure luck. But at least I’ve proved it is possible and to never give up hope.