Mojo (bobbylevi) wrote,

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CFS and my triumphs

When I first got CFS, and for many years afterwards I lived for the day when I would be well again... I put my life on hold as such while I battled the illness. Trouble is with CFS you don't know what you're battling, or even what weapons are effective in combatting it. Then I came to a point where I saw that I couldn't maintain that position long-term. So if the disease and I were going to be bed fellows long-term, and that may well be the case, I had to find another strategy. I was tired of living my life in the shadow of an uncertain future, I needed to find a way to live with the illness... even to live despite it. Rather than be a victim of it.

The first thing I did was take on board that I really did have a long-term disabling illness, and that there was a possibility that I might have for the rest of my life. Strangely, that didn't rock my boat too much. What it did was take the pressure off... the pressure to improve... the pressure to pretend to be well when I wasn't. Having accepted my illness, I was then able to make changes that reflected my condition, like applying for disability benefits and having some appliances installed, that would now announce to the world that I had this problem. On the other hand I now needed to behave in a way that was appropriate to my limits. The limits keep changing, but not so fast that I can't aclimatise myself at each stage. One of the things that has changed is the length of time I can drive, before needing a break.

Nearly a year ago I had to reluctantly give up driving to my daughter's house in Croydon. It was a drive of an hour and a half, but it was mostly motorway, without any services, so it was difficult to stop and have a break. Yet I knew there must be places to stop and that it could be made more manageable. After Christmas I did do it, with the family on board, by stopping at one place we have always known about 1/2 hour's drive from home.... then we found a barely satisfactory place to stop, and I managed it, and Avalon and Jude came with me on the return journey.

Doing it alone was another thing entirely... but still I was certain that there must be places just off the motorway where I could have a break. After pestering Lawrence he finally scanned his detailed map, and with the addition of his personal knowledge of the area, and we identified 6 possible places along the route. They were mostly petrol stations with a good shop, or cafe, and supermarkets, all close enough to the motorway so the diversion didn't add more than it took away.

The best one of all is a place I have wanted to visit for years, and I feel so stupid for not having thought of it, because I am a member of the organisation that it belongs to. It is the RHS Garden at Wisley, which is perfectly placed for a break in the journey. I know that for a fact because I tried it out twice, once alone, on the way to Croydon, and again with Jude on the way back to Oxford. I have yet to check all the others, but I will so that I know where they are if I need them.

What's funny about this... is I'm just getting it worked out into a manageable form... and she's going to be moving in the summer. Then I'll have another route to tame. I will have at least one more opportunity to use this method, so it's not totally wasted. Also it proved to me that tasks can be managed, if they can be divided into bitesize chunks.

This post is already too long... I'll continue with more triumphs soon. Right now, I need coffee and a rest... I have to keep reminding myself that bitesize chunks is how it works!! :-)
Tags: health
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