New Lease

July 8, 2011

this old thing just got a whole new lease of life. I find it difficult to write much these days due to fatigue and problems with hands not wanting to work, etc. I was surfing around on My favourite search engine that even has its own verb and found out that good old WordPress has a mobile site. The term that was used on a forum I read to describe it was “pretty low-fi”. I love it. I’ve tried it out and set up a load more blogs on my read-o-matic blog reader pagy thing, and now feel like I can get a whole load more done. The page is Here
I hope my readers like it too.

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another test

June 5, 2011

blimey what a change. I
m sittting here with the best keyboard I
ve seen in a long while on my lap. I can
t honestly remember if I said so last posting I made, no, actually I didnt. I now have an iPhone and its great. All the fun things others can do like play games, I can do them too. as well as healthstuff liketrack pain, etc. its now a hell of a lot easier. We’re doing a loot more cooking lately since we tarted having a few rehab sessions to help get our confidence back. I’m telling you, cooking’s a lot easier when you can whizz around your kitchen in a decent set of wheels.
I’m also getting the opportunity to scare this lady half to death experimenting with what I can do in my wheelchair: starting indoors and going from there. Actually, she’s really good, not scared too much at all . She just thinks things through and sugggets any improvements to my technique. Apart from this, not a lot’s happened. That’s all I have to report, unfortunately. Take care all.

Moving on Up

January 25, 2011

 We’re moving. Me and N my flat-mate are only going across town, but I am sooo looking forward to this. At the moment, our situation is this. We have A one-bed flat Small bath and kitchen Level access shower nice good size living-room Two steep slopes to get from the bottom to the top of our street and from there to the flat No ramp for road access – have to walk wheelchair up hill – completely defeating the object of having it or have help pushing self up hill. The new flat has: Two beds – one large, one small A bath with level access shower A large kitchen Slightly small living-room French doors to communal garden No front garden Step free throughout I’m chronically over extending myself at the moment. We’re mid way through moving, and while we have help for which I’m enormously grateful, I am still doing way too much and paying for it later. More after the actual move, which is Thursday. If anyone can tell me how best to manage moving house with a chronic pain condition, that’d be great.

A quicky before bed

January 2, 2011

It’s 2011. This kinda sucks as time is moving on faster and faster each year. Then again, when I’m feeling shitty, it feels like its as slow as all hell.
This post is mainly for myself, a bit of a nudge in the right direction.

While there seems to be plenty of talk about new years resolutions, I don’t think anything as rigid as that will work.
This year, I’m talking about steps. Nothing so out-dated as the band, but a hell of a lot less disabling than the ones in minibuses.
Everyone I talk to about achieving your goals says “baby steps”. But what I struggle with is working out how baby, where do I start, and where do I find the internal fortitude to carry on, even though it might be a pain in the breaches.

My list of goals for the year will probably get a hell of a lot longer, but here it is so far:
1. take all of my medication: all day, every day, no matter what it is
2. Request refills or make doctors appointments to get them with adequate time before the medication I need runs out
3. Exercise more: swim, dance, whatever I can think of.
4. Set a bedtime routine and stick to it
5. Eat regular meals rather than skipping them to stay in bed aleep
6 Make healthier food choices
7 Get back up to speed reading braille: I haven’t read a lot of braille for example a novel in a long time. Doing this will tire me out more each day, improve my skills and strengthen the muscles in my wrists without damaging them too badly (I hope)
8. Recognise that I’m not the most important person in the world: life is not a game of one-upmanship.
9 Learn to pace myself so I can do more with less energy: it is possible, I just need to learn perseverance and patience.

Of course, most of this depends on energy and pain levels. This isn’t a get out of jail free card, but an allowance for a bit more patience and strategising with myself.

I sincerely hope that’s it for now, and I don’t remember another half dozen things while I’m trying to sleep.
Its late enough, so I’m going to bed. Night all!

GOINGS ON

July 14, 2010

First of all, I really must say how sorry I am that I haven’t written in nearly a month.

 

 

Secondly, I’ll be writing a little about my experiences at the campaigners’ convention in the next couple of days, while also writing about my experiences at this year’s

I’m very much looking forward to it, and have even gone so far as to plan which stands I want to go to, and which seminars I want to see. We’re going up tomorrow with the NRSB . But while they’re spending some time at the event and then trekking back here, we’re spending from then until Saturday at the exhibition and then the BCAB seminar and gala dinner. This year the seminars are on Apple products and their accessibility to people with sight difficulties.

I’m really excited to see what they’re like.

Anyhow, since I haven’t started packing yet, I need to go, and tonight’s going to be a very long one.

Campaigners Convention

June 3, 2010

I’m glad to see that again this year the The Royal National Institute of Blind People is hosting another campaigners convention.It’s again being held at the www.abs.aston.ac.uk/conferenceaston/ , which is part of Aston University Next Saturday and Sunday, 12 and 13th June..

This was very helpful last year for networking with other campaigners in our region and for building skills to improve my own campaigning knowhow.

It’s just a shame there wasn’t more notice given for this one.

I’m quite excited as I haven’t been away anywhere in a while, and I love meeting new people.

I’m also going as a self-appointed representative of people with multiple disabilities.

I actually quite like travelling, despite my disabilities. I find it interesting to see how I cope with various obstacles. Sometimes while things are happening actually doing the obstacles ain’t all that rosy, but the experience is good and adds to my storehouse of knowledge, to hopefully help me to do the same things or similar ones better next time they crop up, and to help others who may be going through the same challenges as me, hopefully with less hardship than I did!

I’ll blog about it as things happen.

I’ll leave you with a bit of a mishap from last year’s convention.

I’m on growth hormone injections, which used to have to go in the fridge. Hence, I travelled with a couple of ice packs in the case with the drugs to keep them cool.

On arrival I asked for my icepacks to go in the freezer, which the staff duely did. However, when it dcame time to leave I asked for them and was told they couldn’t be found.

After a bit of a delay and much fuming on my part, the right person was summoned, the icepacks retrieved, my face returning to its usual shape from being in a permanent glare, and we got under way.

Suffice it to say, I’m glad I don’t need to keep my drugs in the fridge this time. I’m on a different preparation, which means I can just take the syringe out of its pack and use it.

No more icepacks!

It has to be said however that in all other cases, including finding a fridge for my room for storing said drugs,RNIB and Conference Centre staff really pulled out the stops for me.

I remember thinking that I should write the campaigns team a letter of thanks for all their help over the weekend, but as with a lot of my creative ideas they never go anywhere.

So this year, I will:

  1. rite up my notes in a timely manner
  2. not shy away from volunteering to do things for projects
  3. do things with a smile on my face.
  4. Keep things in perspective when considering me vs others.

That’s me about done for now folks.

Please do comment to let me know you’re reading.

Also, what would you like to see me cover?

What am I doing well, or not so well?

Note: I have a miscreant little tag that I can’t remove, so go ignore away.

overdone

May 31, 2010

I’ve done far too much today.

Among my huge list of conditions and disorders and deficiencies are weak muscles that somehow get far too stiff  far too easily, get tired far too quickly and that cause me a lot of  pain.

 

I’m at one of my friends houses tonight. The deal was she’d come around to mine for a night while our other friend is  away, and I’d go to hers for a night as well. I usually don’t like being on my own, but Friday night and Saturday daytime were OK for a change.

 

Today we went out for lunch, which was lovely. Even though the pub is only just around the corner and down a bit, we needed cash so we hopped in a taxi and got some from a local ATM, then got dropped off at the pub.

Our driver was kind enough to propel me inside and up to our table, as well as helping both of us use the cash machine.

 

I was very grateful to him for all the help we received, and to the various staff in the pub.

At the end of our meal, I mentioned to the barman that I was going to strugggle to get back  up the hill to our house. He asked one of the guys in there if he would give me a hand up the hill in my chair, and the man agreed. I felt as grateful as all hell, but felt sorry for him after a while. He was nearly 60, and struggling. In the end, I helped him out by providing a bit of extra propulsion.  Boy am I glad for those big wheels – and glad to have a chair!

Later when we got back I got on the floor and did some sorting of washing. It takes me along time because even finding a good position requires me to test the bloody thing out.

Then of course I couldn’t decide what I could live without and what I really wanted to wear immediately. I only solved this as I was putting the stuff in the washing machine!

I ended up waiting for it all to get done, packing the rest of my stuff ready to go out and by the time everything was in I was cream crackered.

Carrying my stuff up the stairs to this place was also a nightmare. The crutches which I use when a wheelchair isn’t practical go in one hand and I grab the banister with the other.

I was worried I might have overdone it as I arrived here, put  away my things and sat down. Now, I think it’s gonna be major crappage when I wake up tomorrow.

I’ve just gone down to fetch up some food we ordered. WE forgot to get cash out in advance, so naturally we had to grab it at the last minute.   

Now I’m about to eat my spoils, and thinking please let me be OK tomorrow.

 

For some really good reading around pain, energy and limits, go to  But You Don’t Look Sick and click on “e spoon theory”. It’s very worthwhile reading.

Happy weekend all.