The ME Community

I joined a couple of ME groups after I'd been ill for a few years. They gave me some information, a few jokes and cartoons about having ME and also offered a  few contacts which might help; a video rental and audio books by post company, for example.
Overall I found them, in those days, to wallow more in the fact of being ill. Not particularly helpful on trying to get better.
I want to suggest a few metaphors to you...
Imagine you are building a house. First job is to clear the land, maybe demolish a previous building or clear an area of vegetation. This would represent the beginning of the illness, the original crash, taking away the body's health and realising the life you had before has to be cleared of unnecessary activities.
Secondly you talk to an architect, check the designs and build the foundations. So talk to the doctor, find a diagnosis and try some options through the doctor's recommended treatments. Join an ME group or read some charity websites and relevant  books and realise the vast quantities of options that are out there. So utilise their resouces withou t clingin to them, this is your recovery with your body.
Third job is to begin the process of the exterior and load-bearing walls.You need a planning officer, a project manager to guide your progress and the job starts quite well. You follow your doctor's advice, or begin with an ME specialist, maybe also pain therapists and nutritionists, so the first steps to understanding the condition and initiating recovery have started.
Fourth job will include the roof and windows, also interior walls. The design can be changed at this point with inside walls maybe taken out or added. Weather might come along which prevent the roof going on for a few weeks or months. Little set backs can be disappointing and will lengthen the build time. You probably get the idea from here that treatment strategies might be working brilliantly and the more expertise you have guiding you the more likely you are to be able to choose the best options from the beginning. However no matter what is predicted little things, like a sudden virus, a family crisis, anything which will take away your energy from the treatment process, can delay the recovery. Just know that the building will be built and recovery will happen. At this point you might dip in and out of the ME charities still looking for advice sometimes, but realise that you have to choose your pages wisely- you're not at the onset of the illness anymore. The stages of illness are paramount. If you have had a storm come along and needed to rebuild, the charities and local groups might be helpful, but also your doctor and ME specialists who know you best (and most importantly you!) will guide any rebuild that needs to happen.
During the fifth stage, once the roof and windows are in and the interior walls are set in place the exterior builders can go home. The same project manager will continue the process, guided by your opinions and new experts are brought in to choose interior designs. Wallpaper, carpets, plastering, kitchen and bathroom fittings and any permanent features in the house like electrics and heating which haven't been set inside the interior walls. So the process continues. In some ways this is the most important. Having prepared the canvas by removing as much pain as possible and any more of the more rigorous symptoms more energy will have been achieved. So confidence is built, maybe advice is taken from yoga teachers or general life coaches who help people through the transition from chronic illness to better health and re-entering day-to-day life.  Habits and activities need to be set in place so the illness doesn't relapse as the recovery is continued.
Finally the furniture is chosen and garden is planted up to create a home rather than a house for many years pleasure. This takes time and will be changed as the months and years go by. In recovery new ways of life are chosen. Meditation and yoga might be continued for a lifetime, a more conscious way of living, in tune with the body and aware of its fitting in with the world.
The length of time this whole process will take is not set in stone, but as with house building the more firm the foundations, even if they have to be rebuilt a couple of times, the stronger and more secure the future of the final build.

Stopping Myself In My Tracks

I have done this before. Started walking again when I realise how much I prefer walking to sitting in a wheelchair. Nice idea. Unfortunately with ME patients it doesn't always work like that!
So what has happened before? Over a summer, when the weather has been good I have been out of the house. Maybe starting in April, thinking I would try to start getting a bit more exercise, enjoy the free spirit. By August I am getting on a bus and having a whale of a time. But I am not listening!(see yesterday's post) My body was saying in June, "give me a chance, I know you're anxious to walk again, get some independence, but I'm not ready yet" I might have muscle aches, hip pains, a couple of 'crash' days dotted in and out of the weeks and my life would start to become a full blown wave of booms and busts, with seizures and days in bed, by the end of the summer. By September I'm cursing myself deciding what it could have been that caused all this. With so many symptoms being thrown at me, I am confused to say the least, especially with the last two months of probably hotter weather making it difficult anyway (over 23-24C is too much for me!).
Over the years I have tried more and more strategies to combat this. Just walking three days a week. Not using the bus and staying in the local area, only walking on flat ground. Last year I tried walking 100 yards then resting for a few minutes, taking me 20 minutes or more to go somewhere which would previously take me 6. I found so many walls to lean on and seats and benches around the town, I could lead a guided bus tour of them!
My legs are getting stronger, I don't get dizzy as often when I'm upright. I can stand in the kitchen for longer and have pushed the wheelchair a bit this week when we have been into town, here on holiday. Hindsight and knowledge is giving me a new perspective. If walking, like I have done this week, feels good and I do it every day it will probably lead to another downfall. However, if I walk for 5 minutes every day, or 5 days a week, I may manage quite well. The occasional slightly longer walk or standing will not make a big difference, but as with the meditation and yoga, it is the accumulation of it that makes the impact.
Walking is something I love. It was something I experienced a lot with my parents when I was a child. Going on holiday was about walking, not visiting theme-parks or spending all day by the pool. All it cost was a pair of wellies for everyone, wet-weather coats and a bar of Dutch chocolate for half-time! (my Dad would pick them up when he went over for work!) It is one thing I long for in my future and probably explains why, as soon as I feel the road under my feet, I just want to go, go, go all over again. I'm feeling that again now. It is so hard to restrain myself, but to find the end goal, and I do believe that is a plausible goal now, I have to take it one step at a time.

Crash

This is a stage of the illness which can come and go, but is generally the first initial realisation of having something seriously wrong.
The Crash stage is defined as absolute exhaustion, total and utter desperation for relying on others and no real chance of achieving anything through the day.
The main problem for this stage is that action has to be taken to remove yourself from it. All obligations have to be cleared and bed rest is the answer. Crash leaves muscle aches, headaches, joint pain from slightest movements, possibly even constant nausea and very little energy to eat and digest food and drink- for this reason indigestion is another symptom that will rear it's ugly head.
Bed rest can be boring, tedious, never-ending; leaving a feeling of desperation and through this a glimpse of optimism has to be found somewhere. Acceptance of the situation is the first step- which might take a coupe of days as dips and crashes can be confusing, usually for me a sore throat is the first sign that something isn't quite right. After acceptance come action: sleep, rest, sleep rest!
It is at these times when I keep in touch with the world through TV and radio, newspaper reviews and weather forecasts. Looking forward to particular programmes everyday, but avoiding depressing soaps and films. Chat shows and magazine shows are great for the short attention span needed and I would also watch DVDs of TV series - again looking forward to the next episode as it helped the time pass. I also joined Facebook so that I could become part of daily life and find out what friends were up to just half a mile away. Emails everyday, or when I was able, became a good source of encouragement too.
It may seem like a giving-up option, but when bed rest is needed, for the body to heal this is a good option. By scheduling a sleep every afternoon I had a good indicator of when more activity can be added. As the weeks went by I noticed that less and less sleep was necessary, so I added little activities instead. I bought a few magazines to read, managed a bit of knitting, started searching and reading more about the illness online everyday and this was combined with a little yoga on a daily basis, with meditations and audio books.
If recovery is not monitored with careful pacing or little obstacles appear that are unavoidable like a virus or family situation, crash will happen during recovery. It will be less of a disastrous crash; more of a hiccup, but similar responses are required. Complete bed rest being one and just slipping back to a quieter routine, being another. I know one of the best things for me in these times is to avoid leaving the house, cut myself off from visitors and give myself some space. A couple of phone calls every week and an afternoon sleep every day, keeping my diet healthy and accessible, with a favourite DVD set or book to read is what usually helps me. After a couple of weeks of floating through I feel better able to pick myself up and keep going. Crash (or even just a little dip) requires acceptance and action.