Running to Stand Still (by sarah)

So for the past 4 months I have basically not used my walking stick, I have been walking and lifting small amounts of stuff and generally getting on with things. Today I managed to sit on a rug on the ground for the animal service at the Cranham Feast and even jumped up to take some photos of donkeys and sheep (as you do), but it began to hurt so I didn't stand up for the songs but sat with Mary on the rug (Jean and Al were holding banners and flags and what not).

When I say hurt - it was nothing but a minor ache, I then walked up to the cricket field in the procession and even carried the baby for bits of it but that was beginning to be painful so I was slow but not as slow as last year and I felt proud I was walking much much much better even than last year when I was just happy to have walked it. But everyone was slowly passing me and I felt embarrassed(and sad) that I had to let my toddler cry instead of carrying her. People did offer to carry her but she refused to go to anyone other than me.

I made it to the cricket field and sat - for not very long - then I started setting up the childrens sports and I was happy, happy and exhilerated that I was managing to sort of run the routes and show the kids how to skip and so on. And I thought wow! What an improvement and then I looked at the cricketers and I thought - you know I've worked so hard to be able to do this, to be get the mobility back and to try and keep some level of fitness whilst it and the aneamia were bad. So much effort fighting the chronic fatigue and pain which will always be there and being careful about foods and the like, so much physio and effort. It's like my own mini olympic training... to be not quiet as fit as a normal person.

So though I feel proud and happy about what I have achieved and the improvements, I feel sad that it takes just so much energy and effort and to a certain extent there is always going to be something I am battling even on brilliant days - this is becoming less of an issue as I get older actually as my peers are increasingly coming up against illnesses and the like and I at least I have had a decade to adjust were as for them it is new. I also find myself feeling angry. I think, 'you know all that effort and people look at me and think lazy fat cow' and I am angry about that, I am jealous as well - the darkest moment with that was during Jean's pregnancy when I had been let out of the hospital to go to the pictures with Al, he was pushing my wheel chair and everything hurt. I had followed all the health advice and done everything right and there outside a pub we went past was a woman as pregnant as me in tottering heels, fag in one hand and bottle of something in the other talking about going clubbing. I can't express the hate I felt in that moment.

I've probably said most of this before but it just sort of hit home to me tonight as we watched AVATAR for the first time and the guy having to pull his legs about reminded me of the fact that there had been phases of my life when I've had to do that and bizarly that it is sometimes easier when you are in a wheelchair or on crutches as people can see you need help. When you are getting better (or worse) people see an apparently healthy young person and tutt about them not giving up a train seat etc...

As I tell Jean - you can never truly know how another is feeling, you do not know how hard or easy things are for them, you should not judge them as you can not judge them, you can not know.

Today Al was also worried that I was doing the main lifting and shifting for the sports stuff we did with the kids, I got it all out of the shed and lumped it across from the car etc but I was capable and he was doing the procession holding the banner and I didn't want him pushed to far with the way his legs have been and the antibiotics etc...

He was pleased to see I didn't flag as much as he was expecting - the odd sit down here and there was enough and I only started limping towards the end and it was a hard long day for me.

It feels to me like I am Running to Stand Still and I haven't even really managed to stand still, I have slipped backwards - I write adventure stories with caves and mountains and things in, I remember climbing, I take Jean to the climbing wall and look at the pictures of people climbing - I see moo cow fluffy chalk bags and I get excited and then I feel hollow as I explain to Jean why I am not buying it.

I think I also push myself for events as I can push myself through them and then take time to recover and it makes the more painful times tolerable by having something to look forward too. I have had a decade or so to adapt to my situation.

I got a thing through from college - the rearranged meeting about disabilities and stuff (I missed the first one due to Al's legs) - part of me wants to go 'no I'm fine now honest I don't need help.' This would be a stupid thing to do but it makes me feel so pathetic.

I know though that this is standard for those with long term / chronic conditions and on going health issues - hey I even stole the title of this blog post from a friends audio play about ME /Chronic Fatigue. The money from it's sales is going into research into the condition which can only be good - it wouldn't solve the separated pelvis but it would be something 🙂

Mainly though I am happy today - I walked and ran and tried to show people how to hula though I was not able to do much other than head and hand hula and I took video of Al trying to do foot hula and the kids loved everything and it was a nice day and I was pretty much a normal person - no stick or crutches nor lifts needed.

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