This morning I put on my high-heeled boots and went to work. Just typing that makes me realise quite how far I’ve come. It is of course quite something to have a job.But high-heeled boots? Hallelujah! They’re my first pair of proper high heels in 9 years.
At a guess I’m now around 80-90% well. I’m still a person with M.E. and fibromyalgia* and I suspect the illness may be a friend for life. But with every year that passes I win back a little more function, energy and stamina and my brain works more clearly, bringing me a bit more of the normal stuff that well people take for granted.
How it all began
I’ve had variable health for most of my life. My first fatigue-type illness was in my early teens, possibly related to multiple vaccinations and hormone treatment I was given to stop me growing (the doctors told my mum that without it I’d end up six foot three and no one would ever marry me!). From then on there were lots of minor things: recurrent tonsillitis and bouts of fatigue, thrush, cystitis, chest infections and shingles.
As a civil servant, I had originally been recruited on a demanding fast-stream graduate scheme for which I had never had quite enough stamina or ambition. I’ve no doubt that the stress and misery of being in the wrong job for several years also contributed to the steady erosion of my health.
Then in the mid-nineties at 26 I caught an enterovirus or possibly gut parasites on holiday in
Taking charge – my first recovery
My recovery started, ironically, when I was at my most ill. An inexorable downward slide in my health had been going on for years, and I realised it was time to take charge. I’d begun to read books about M.E. as I got worse, and it soon became clear that descriptions of it fit me like a glove. My doctor in
When I couldn’t hold a book, talking books were my lifeline. However, I managed to work my way through M.E: A Practical Guide (Thorsons, 1998)* by Dr Anne Macintyre, which became my bible. Two of the best energy-saving tips from her book were to get a high stool for the kitchen [available via Social Services’ Occupational Therapy departments – Ed], and, if you can afford it, to get a cleaner. To which I would add: only buy clothes that don’t need ironing!
My first copy of InterAction contained an order form for various supplements and, with my parents’ help, I decided to try Magnesium EAP2. Within two days of taking it I was able to get out of bed and walk 100 yards. This gave me hope that if I could learn enough and get the right advice, I would have the power to heal myself.
Financially I was extremely lucky. I had some savings and as a civil servant was entitled to full sick pay for six months. This meant I could afford to try different treatments, though I chose what to try based on careful reading.
I started seeing nutritionists to sort out a proper supplement regime. On a mission to get my life back, I became a perfect nutrition zealot, making vegetable juices (which I can strongly recommend and still find very helpful) and trying the anti-candida diet, the low blood sugar diet, wheat-free… all that jazz. Eventually I saw Dr Alan Hibberd with whose help I dealt with both yeast overgrowth and gut parasites. My health improved steadily. Under his supervision I went on to get my amalgam fillings removed, which also helped quite a bit even though it was a bit of a nightmare at the time.
I was disciplined about things I could do for myself, like slowly building up my walking and mental activities. I look back now and can’t imagine how I managed to be so organised, but I think it was because it was still my first year of illness. I also began to learn lessons for which I will be grateful all my life: how to listen to my body, how to make careful choices about what to do with the energy I had, and the great delight of letting go and resting.
Returning to work
Nine months after getting M.E. I was able to go back to work to do a special project part-time on medical grounds, which meant I got an element of sick pay for the hours I couldn’t work. After several months I managed to get my hours back up to a four-day week. One huge benefit of the illness was being able to pack in the ‘fast-stream’ without shame. I ended up being offered a new job internally, which turned out to be perfect for me.
However, the process of re-entry turned out to be surprisingly tough emotionally. I ended up getting a therapist to help me deal with all the anger I suddenly seemed to have. It was as if all my mental issues had been on hold while I was ill, when I had felt quite peaceful even though I had often been sad and afraid. As I recovered it felt like being repeatedly ambushed by my own crap. I realised that if I didn’t want to repeat the patterns which helped made me ill I would have to put some effort into changing and growing. I began to try out different personal growth activities.
For the next few years I improved slowly, but plateaued at 70%-80% of full health. Looking back I think my nutritional regime had only dealt with half the problem, while the underlying cell and muscle dysfunction associated with fibromyalgia (FMS) was actually deteriorating.
My first major setback
In 2001 I had a major relapse and was off work again for seven months. My pain was worse than it had ever been, with brain fog was so bad I could barely hold a conversation. I was pretty desperate as there didn’t seem much left to try, but eventually managed to starting reading again, this time focusing on books relating to fibromyalgia.
Among these was one on the ‘Guaifenesin Protocol’, and after much hesitation I decided to go for it. I believe views are mixed on guaifenesin, (a common ingredient in cough medicine trialled for FMS with inconclusive results), but for me it was pretty much a wonder drug. Although the first couple of months on it were quite tough, within weeks I had gone from shuffling about to walking and swimming again. Within three months I was back at work part-time, and built up to a four-day week three months later. Since then, apart from a few blips, the trend has been steadily upwards. I still take guaifenesin, but try to keep the dose as low as I can. [For a medical view on this drug, see InterAction 49, page 41 – Ed].
The cost/benefit analysis
Managing my health has become second nature and it’s where most of my money goes. Everything comes down to a cost/benefit analysis: do the health benefits I gain from a particular treatment or regime consistently outweigh the cost, effort (or misery!) it entails?
Nutrition, mainly through supplements, has continued to be central to my regime, with what I take monitored by complementary practitioners I can trust. Although I started out eating very virtuously, I found that I couldn’t face doing this for the rest of my life. These days it seems that I can manage my candida perfectly well on a regime of herbal anti-fungals and liver support, provided I don’t go too crazy on sugar. It has been pretty tough holding down a
Although I’m lucky to have had the money to spend on my health, I’ve got better at getting the most I can from the investment. I don’t take on more than one new therapy at a time, and will give it a couple of months to see if it makes a difference before deciding whether to continue or try something else. I’ve learned that price doesn’t necessarily have anything to do with effectiveness as some of the most effective things have also been the cheapest. I see the practitioners I consult as important resources, but final decisions are down to me. I believe each of us is our own best expert and that it’s important to be captain of one’s own ship (although sadly that hasn’t gone down too well in my dealings with the NHS!)
Other things that I have found valuable include:
· Alexander technique – you can use your body much more efficiently and less painfully if your posture is good, especially when muscle tone is lacking
· A Russian invention called the Scenar - too complicated to explain here see:www.scenartech.com/whatisscenar/index.html
· Lymph drainage massage – I’m given a tailored approach which has been excellent for managing my pain levels
· Some types of homeopathy
· Liver cleanses – though they’re really horrible to do!
· The ‘Airnergy’ machine – a type of oxygen therapy I’ve been trying the last few months. My impression so far is that it’s made a significant difference to my stamina and energy, as well as reducing my muscle pain. However it’s very expensive!
I’ve also had minor benefits from shiatsu, acupuncture and herbal medicine and feel better on a mostly vegetarian diet.
Mind, Body, Spirit
I’ve put a lot into personal growth, on the basis that unhappiness and emotional kinks use up energy I can’t spare. It’s important to find the thing that feels right for you, and in my case this was an American approach called the Option Process® based on the idea that happiness is a choice. I’ve learned some useful lessons about playing to my strengths from exploring a theory of personality types: understanding my natural preferences helps me identify the activities which require the least energy for me, and explains why others seem near-impossible.
One of the most useful ideas I’ve come across is from Dr Darrel Ho-Yen’s Better Recovery from Viral Illness. His concept of ‘energy as money’ is absolute gold dust: rather than using all the energy you have, making sure you leave some ‘in the bank’ for healing. Whenever I feel that I’ve gone into overdraft in energy terms I always plan rest time to do ‘payback’ and recover.
With energy, as with money, you can only spend it once, so you may as well use it on the things you want most! Comparing notes with some well friends recently I realised that I have learned to prioritise more effectively (and ruthlessly) than they do, and in some ways I achieve more. I set aside time and energy for the things that are important to me like having fun with friends or doing college work. But I don’t do housework, rarely open my mail (the bills are on direct debit) and there’s very little I’m prepared to do just from a sense of ‘ought’ or duty.
Torn between two worlds
The hardest thing for me has always been living part-way between the well-world and the ill-world. I mostly live in the well-world, but I’m not quite a full participant and at weekends I have to make sure I have plenty of time alone, either to chill out or to be ill. I’ve learnt to talk openly about my illness, and although well people often find it hard to comprehend, others know someone close to them with M.E. and are unsure how best to help. In these cases they’re generally excited to pick my brains and feel encouraged by my situation.
Having M.E. but being able to sustain employment brings with it a different set of challenges from those facing people who are too ill to work, and being so well I sometimes find myself feeling a sort of survivor’s guilt. Why should I be the one who recovered, when others have so much to cope with and for so long? My wonderful family really ‘get it’. They have seen me at my best and worst, and relate to both the well and ill sides of me.
The view from here
I still work a busy four-day week, and have a good social life, though I’m not exactly a party animal. I even have hobbies – an IT diploma at
I know that if I take the wrong risk, overdo it for too long or catch an unlucky dose of flu, I could end up unable to cope. Whenever I relapse it’s good to rule out all the serious things before I decide what to do next, so I sometimes pay to have blood tests done privately. But I try to make sure that I only commit to things which I can sustain. I also try to accept that sometimes ‘shit happens’ – like finding out that I was highly chemically sensitive to the glue used to put in a new carpet at work!
The high-heeled boots are tough on my muscles, and give me blisters. On bad days I wear something more comfortable, but on good days I get ‘heeled up’ and it feels great.
