A Day of Pain and Gain (by sarah)

I woke up early yesterday as in 4:30 in the morning, it was tipping it down and I was in pain, arthritis/joint pain and I had to take pain killers, so I got up and did some writing. Dawn was miserable and grey and you could hardly tell it was daylight if I am honest and I was miserable. I had been planing on walking to the library with the girls.

However, the baby slept in and Jeany was happy to play mathletics so I went back to bed with more drugs and awoke a couple of hours later feeling just a bit achy and sore and the rain had stopped. I got dressed and retrieved an awake but happy MAry from her cott and set the girls up with a film whilst I awaited the boiler service men. They came, had tea, chatted with me about bands from the 80's , said the boiler was fine and went. I packed water and nappy changing stuff for Mary etc... and off we went to the library - walking - I managed this last week with Alaric but knew it was the edge of my endurance.

My pelvis was creaking by the time I got there but I managed it and the girls sat there happily reading the books . for about 45 minutes - all told we were there for about an hour. Jeany has finished the summer reading challenge as of last week but Mary has been getting her little passport stamped and it was her turn to get a certificate. I am hoping to take her to the Tuesday rhyme time there but it is quiet a walk for me still - it took me about an hour to walk each way though I do go rather slowly.

We left ladened with books and Jean navigated us home, I then remembered that I had planned for us to blackberry on the way home as I'd noticed some were looking ripe on the way to the library last week but I had completely forgotten and we had no tubs or bags or anything on us 🙁

Then Jeany had an idea and we drank the water from her water bottle and Mary's beaker and filled those up with them 🙂

It worked really well and there were soooooo many berries! I quiet want to make a black berry wine this year so need loads of the things!

Jean has requested crumble and Mary cake so we shall see, especially as several people have been asking about the hedgerow jam again as well and there are enough elderberries and rose hips and things along the way that I think it should be possible.

It was a hard day physically but I feel I achieved alot and I have at the very least I have gained some blackberries. I am sore today, but not too bad.

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.

Kitten Worries (by sarah)

The kitten got very ill, she'd been manic for a couple of days, really bitting people and not settling for cuddles at all, we thought she had just reached a hurtling around phase but then I came home from the poetry festival after midnight and she was all floppy, Al had stayed awake as he was concerned about her. I thought initially she'd just exhusted herself.

But I couldn't sleep and kept going down stairs, when I came down to find my mum holding her I knew she was ill, I woke the house hold up and questioned them as to what had happened to the kitten that day - the baby had y on her (eek I thought), I'd had to clean tooth paste off of her from where Jean dropped her tooth brush (eek I thought maybe she eat some), she hadn't eaten anything, and the amount she'd been eating over the last few days had been reducing - my friend suggested she had a hair ball and I had already had to remove a big clump of fluff from her mouth so that seemed likely.

So it was off to the vets as soon as they were open.

He laughed when we explained the sitting on and the tooth paste, stuck a thermometer up her bum and prodded and poked her - she had a fever so he gave her two injections and gave us liquid antibiotics to give her. I was relieved that it wasn't anything serious though left it could have been but part of me had been thinking please don't let it be from Mary sitting on her or the tooth paste - Al had been thinking the same - what to tell Jean if it had been tooth paste posoisoning. She loves the kitten and looks after it and had gone to school that morning in tears as she wanted to stay with the kitten because it was sick - the tooth paste was an accident. I felt awful I felt that in going out and working for a week the house had fallen to pieces and one of the little dependants had gotten ill because I wasn't there to keep an eye on things.

The kitten is now uber bouncing and happy again with out the bitting or manic edge which I assume was the pain/grottiness she had before the fever broke.

She spent three days just snuggling on one of us, she and the baby were kept apart as we didn't want her pulled about at all. We fed her water through a syringe and the antibiotics the same, she liked being in Al's hood. For something that was basically dumped on us less than a month ago she has become so integral to our lives, the thought of the household without her bouncing about was heart braking. I never do realise how attached I am too pets until something happens. I spent most of the piggies lives calling them silly suasauges and saying how daft they were and then when they went missing it was me trying to hunt the hedge rows on crutches killing my pelvis and setting back my recovery to look for them, I cried and cried over those little fluffies and am still so angry about their demis.

Still the kitten is fine and happy again - I am however currently banned from adopting anymore baby animals. Talking of which I should go and give that bunny some breakfast!

My back is fixed! (by alaric)

Over the past few years, I've been getting worsening pain in my lower back. An ache just to the right of my spine (where it joins to my pelvis), with shooting pain down to my right knee; sometimes it would be so bad I couldn't stand up straight. At first this would only happen if I'd had a hard weekend carrying boxes or doing long drives, but it became more and more frequent, until I was having to carefully watch my posture in every aspect of my life for fear of triggering it. Read more »

One Leg Longer than the Other (by sarah)

So awhile ago Alaric started having horrible lower back pain which we thought was initially a slipped disc as did the Dr and he got refered to physio and he seemed sorted but then it came back, this time with exploding knee and things. It has been getting worse and more frequent though disappears in the intermediate stages - he had to be tested for various other nasty things like bone cancer etc... especially as he was having the night sweats and things but these were all clear.

Further prodding and pocking reveals he has a wonky pelvis leading to inflamation of the thorasic joint - he has siattica basically. He is fixable - especially as it appears the wonk has been caused in the first place by one leg being short than the other. He says in hind sight there has always been an issue with him getting into trouble for 'tripping people up' as he naturally stands with the longer leg sticking out.

So he needs manipulation and special shoes, but the nhs wont fix him, they will prescribe pain killers and send him to pain management but wont fix him as it will cost too much. His Dr has given him the contact details for the person she went too as she had the same problem.

I just don't understand the logic of the nhs - left untreated he will end up a cripple and dependent costing them alot of money. I suppose it's why save money for a tomorrow we shall not see :/

But more than that - when I was at school we had a medical in secondary school where they measured everything and checked spins were straight and all sorts - he apparently didn't have this - I can't help but think the leg issue would have been picked up then - the amount of damage all ready done which could have been solved by made to measure shoes with different height soles :/

So the mission is to sort him out - we can't afford for both of us to be cripples. When his back is bad we have to work together in the most ludicrous of ways to get the most simple things done. Not too bad at the moment as I am walking again but there were a few dicey weeks when I was on crutches and he couldn't lift anything last year. We had to work in tandum to get the baby seat in the car etc...