more space please!!

Dear Followers,

Once again, thanks for not giving up on me! This past week (or is it a week and a bit) I only seem to have had the energy for one thing each day, and therefore no energy left to write, which I have hated. Last monday it was physio/physical therapy, and horse-riding on the Tuesday. Try as I might, I did not have the energy to type as I slept after each of these activities and through the night, albeit in a disturbed, interrupted way. There was little respite on Wednesday, as I went to the fortnightly women’s group which belongs the church I go to. I really had to force myself to go, so little energy meant even less inclination to be in a crowd of even 8 women, lovely though the are, and even though we were studying  the word. Force myself I did, and by the end I was glad. Straight home to make dinner, before writing a shopping list, and having a think about a meeting I had later that afternoon. As soon as that afternoon’s sitter (befriender/carer) arrived it was off to the supermarket and pharmacy. No sooner were we back, I was straight into a meeting with my social worker and someone from my care agency to begin talking about support I may need for holidays or travelling to (other people’s) weddings. As some of you may know, these things are never simple and always last longer than anticipated. If I had any energy before, I had none after that. For once, I had put some thought in and realised I would never make the church AGM that evening, so had emailed my votes to one of the elders. Just as well, for I collapsed in a heap for a while. Thursday, Friday and Saturday were time to rest, as I had no choice. However, they passed in a blur as I was too restless. Too tired to do anything, and too tired to rest properly, causing me to feel guilty at my lack of meaningful activity.Fortunately, I did make it to church on the Sunday morning, despite falling asleep twice after the carer left, and again during the service. Perhaps it is unwise to admit to that!!

Things have not got any easier with the start of a new week. Monday morning brought a hospital appointment I had waited for, and dreaded, for the best part of three months. I am still collecting new specialists occasionally, including on Monday so that added extra stress. I was sensible enough to have requested carer/caregiver assistance for the appointment  Just as well, as from the point of waking up on Monday morning, the headache grew and grew to a full-on migraine. It wasn’t all bad. The person who had been asked to support me is lovely and helped me find the humour in the situation. Having not seen them for a while, there was lots to catch up on too. Mercifully for the times we needed to queue, waiting times were ‘normal’ for these things, so though there was a  wait each time it was not more than thirty minutes. I was so thankful for support as without it I would have cancelled my appointment and crawled into bed. Admittedly  I fell asleep in my wheelchair for hours after the appointment  but not before my carer took me for a step free walk (they walked, I wheeled) somewhere further away than my most local supermarket, as it does not have the facility to pay bills. ‘Only’ for the purpose of buying a very few groceries and buying gas and electricity, but the fresh air did me good, despite it doing nothing for the migraine. Given the level of my difficulty find my way around anywhere other than the tiny areas I can navigate comfortably, due to the number of times I go to those places, it is rare I venture anywhere else, seeing as I wouldn’t know where I was, were I was going, or once back, be able to retain any of this information for future use.

Monday done, the night was not much help as it was especially disturbed. I would normally attempt to go horseriding on a Tuesday, as I had done last week, but unfortuntely there were not enough staff available to assist me. One of those things, though a shame as it was a beautiful day. I still did not accomplish anything meaningful yesterday in terms of tackling the growing to do list, as I fell asleep for several hours after lunch. In between times, any time I thought about moving and trying to do something, I would fall asleep almost instantly. This happens often for several reasons.. Partly the medication I take, partly because having cerebral palsy means it takes me much more energy just to do the basic things others take for granted, and partly because I am always in chronic pain. It is hard to describe just how wearing all of that can be, unless you know this kind of tiredness for yourself. One way of thinking about it is in terms of spoons. Each day, with its varying levels or energy, or even hours or minutes can be thought of as a spoon, or spoons. Each day only has a certain, varying number of spoons. Once I have used them, there are no more, and nothing can be done about it, causing me collapse in my chair. In these times I may not sleep, but instead, as mentioned above, be extremely restless, to tired to do anything, but too tired to sleep.

It is in these times that my eyes drift to the wall of whichever room I am in. I never used to display photographs as I am not much of a photographer  The most i ever displayed were posters, either ones I had been given or occasionally ones I had bought myself. As I have gotten older, this hasn’t really changed, as most of what now adorns the walls of my flat were gifts from close friends or family. Only two of the items have been chosen by me, a picture in the living room and a painting in my bedroom.

Taking inventory of these things, if I look immediately up from where my laptop sits, I see two photo frames, one containing a family photograph of myself.  my parents, brother and lovely sister in law at their wedding last summer, and the other, taken at the same place, contains two photographs; one of my Grandmother and I, and the other of my grandparents. I often look at these photos during my sleepy times. It is more than just looking at the pictures. As photographs often do for anyone, they remind me of a special occasion, a happy day, and is a chance to replay the memories in my head. For me, they are also a reminder of a rare day when I felt as well as I can, and achieved a lot, managing to stay for the whole day, meeting my brother and sister in laws many friends, and catching up with family. A reminder, that having managed it then, hopefully I could manage something like that again, given prior rest and meticulous planning, including pacing of each and every hour, as I did then.

I look to the left of those pictures, and I see a print I bought from a local department store the weekend I moved into my flat. It is a pretty picture of a mustard yellow flower with a red centre and browny-green background, bought to tie in with the other colours in the front room/sitting room , Behind me next to the living room door is a plaque my dad found in China, which displays part of the text from 1 Corinthians 13, a famous passage which describes the best, purest kind of love, and is often read at weddings. It also includes the chinese (mandarin?) character for ‘love’ which one of the carers one explained to me in depth. Interesting at the but unfortunately cannot remember what he said, at all. I often find this; that my persistent tiredness prevents me from taking new information in and remembering it fully, if at all, sometimes.

Next, to the hallway. There are several things displayed here. First, is a small mirror which a dear friend bought me from a posh shop as a house-warming present when I moved into this flat, Moving right, next is another flower print, also yellow and gifted from the same friend, which she bought to tie- in with the shade of yellow we painted the hallway. At this point my memory fails me. I’m off to check out what else is on the walls!! As it happens, I was right. The only other thing displayed in the hallway is pinned up next to the bathroom – a calendar of photographs of various Scottish landscapes which was a gift from my friend’s mother; a thank you present for ‘putting up’ her son and his friend. Translation, should you need it: for having them stay with me!

Finally, to what is displayed on the walls in my bedroom. The first thing most people notice when they walk in was a gift from my dear grandmother; a framed picture of my ‘Sunday-name’, Jacqueline, written in calligraphy, which she bought during a holiday to somewhere in Canada some years ago. Previously, I had nowhere to display it, so it lived in a cupboard at my parents house for some years, but when they moved house a year ago, the picture came to live with me.

Moving clockwise round my room, next is a pinboard, on which I display reminders to myself of what. and who to pray for, which i use at various times of the day or night, having read of someone who made something similar as, unlike me they were completely confined to bed, but from that prayer-board could reach all corners of the globe by praying for missionary workers and projects oversees, and other friends who had requested prayer for themselves or people they knew.; I read it inspired to begin my own and it has helped focus my mind on a number of occasions now. Here again, I have to go off and check what I missed out.

Moving clockwise around my room, next is the newest addition to the space, a recent birthday present from a very dear friend, and her soon-to-be-husband; a silhouette of a horse. I loved this as soon as I saw it, partly as it was such a thoughtful gift. A small yet significant reminder of one of my passions, and brings a smile to my face every time I see it as it reminds me either of my friend or of the pleasure I get from seeing the horses, and from horse-riding. When I went into my room, I saw the final item, a framed painting I had completely forgotten about, which I bought at a open day at a local social enterprise. The painting itself is special, of daffodils of a similar hue to the colour of the paint in my room, in a red vase on a purple background. I bought it partly for that, and partly for how bright and cheery it is. I smile every time I  see or think of it, either because of the painting itself or because it reminds me of the young woman who painted it; a friend who is a beneficiary of the social enterprise project. I loved the painting as soon as I saw it in the art room, and treasure it. Much like my ‘prayerboard’, when I see the painting it reminds me to pray, this time for the young woman herself or more broadly for the social enterprise which supports her and many other friends.

I suddenly realised while i was writing about the painting I have forgotten two further pieces displayed in my sitting room. One, a photograph in the far corner of the room, of me sitting on the horse I love, me sat bolt upright wearing a hat which obscures my face but protects my head, and the horse, patient as ever, standing to attention  ears pointing skywards  just as he has done hundreds of times before, being an ex-police horse who loves the camera and knows exactly what do when a camera is pointed in his direction, a true professional!

The final item in my sitting room is also a picture of a horse. This time it is a caricature drawn by a friend, of an imaginary horse, (apparently modelled on the horse from the disney film ‘Tangled’!!). The horse is sitting in an electric wheelchair of all things, a expression of pure terror on its face. It makes me giggle every time I see it, and is a point of conversation for a lot of people when they first come into my house, and often, actually, an ice-breaker, if I have not met the person before. I guess by now, you are wondering about the story behind the picture. I asked my friend to draw it after an incident when I let a horse get too close to my wheelchair, and it bit a button out of the control panel! My fault entirely. A friend later remarked it would be just like this particular horse to steal my chair and joyride round the farm!! This caught my imagination and so I commissioned my friend to draw it for me, not being at all gifted in it myself!

Being blessed with lovely friends, I have one or two other pictures I have no room to display. One is new, and the other has been taken down to make room for something else. The other is a recent birthday present of three prints, designed to be displayed together. They are very pretty and make me smile, but I will have to move pictures around to make room for them.

I am not aiming for any particular mood; or even any particular look, but I love how each of the items on each wall has a story behind it; either the very first things I chose for my first flat, or a memory of happy times, or a gift from a dear friend. The memories are precious enough to help me keep going in the tough times; but also each time I see each item I remember who gave me the gift, and how blessed I am to have them in my life. I don’t generally have photographs sitting around, as I would tend to send them flying with a stray arm or if I knock into them with my wheelchair, which is often! Having recently had a party for a big birthday, I do have some photos I might display in frames around the place, though I will put them well out of harm’s way!

 

People mostly… (and horses)

I started writing first couple of paragraphs earlier this morning, but the router has been falling over even more than me this week, and it was more important to have bible time than to faff with t’internet!

What haven’t I blogged about this week?!

Normally I have been known to write an average of one “this was the week that…” post in my week. Normally on a Saturday, or a Sunday if I’m being naughty. I did wonder if there was any need for me to write one of those post this week seeing as I’ve already blogged more than usual. I’ve talked about the paralympics, though I’ll have to stop that now this is the final day (sob!) I’ve written a couple of commenting-on-the-news posts, mostly about Rimsha, the 14-yr old girl with learning difficulties being persecuted in Pakistan. There was also, selfishly, the soul-baring post I wrote earlier this week on “The (5) days that dared to change my life”. I have been overwhelmed with responses… mostly in people’s kind comments or tweets, or just that people have read it at all… have been overwhelmed by how many people have read that particular post, cheered when I’ve realised how many people have been interested in reading about the paralympics, and heartened when I realised how many took the time to read about, and hopefully pray for, Rimsha. Please do continue to pray for her and for her family, or to start doing so if you haven’t already. Other topics I blogged on this week are things I am likely to write about in the future, like falling, for which I could compete for a medal! As far as Christians being tested for their faith, I have written about cases recently appearing in the European court of Human Rights. We in Britain know nothing of what it is like to be singled out for our faith though. Please pray for those who are. For prayer pointers, please look at the eebiste of Open Doors UK

 “Nowt so queer as folk”

The main thing I have yet to blog about are the other three main activities this week. Encounters with people, learning about the magnificence of horses, and the supporters day for a local Christian Social Enterprise.  First thinks first. I spend a lot of my week managing people. This could mean all manner of things. For example phoning people to arrange appointments, pay bills or phoning nurses, friends or carers for help! I have already talked twice in this blog about care, but I spend much of my week managing carers. Worrying, before I get the rota that week, exactly who will be turning up and if they will be trained to meet my needs or if they will wing it. This week, I went swimming for the first time this year, which you can read about here. The only thing I neglected to mention, is that I’d happened to say to the receptionist I would be exhausted when I came out of the pool. So Emma said and why’s that. I thought oops I’m going to accidently embarras her here. I quetly said it was because I didn’t have my manual wheelchair. ‘Of course you don’t she said. “So where is it? I forgot because you loooked so natural weith the zimmer!” How are you supposed to look with a zimmer exactly?

Horses (I love then to bit at all times, except when they tear lumps out of my chair!

The other exercise of the week was my horse-riding lesson which I spent re-learning some basic dressage ateps. I thought I did pretty well. The worst bit was, I tried to make like a papralympian, in this case, the beautiful Sophie. I have no idea hoe she manages with her feet out of the irons; it looks so painful. I spent a couple of days getting over the shock! That, and I had my first ‘horse related incident. Given this one, You think I’d have learned from it!! I had some mints with me so I shared them among the horses equally, until Paulas asked me to give my last polo to Gwen. This I did, and returned to stroke the nose of the middle horse, mistakenly with the wrapper still in my hand. Not finding any more polos, the horse decided he liked the look of the golf ball I use to steer my chair and stole it. At the point, there were not staff around. Perhaps I could/should have waited till the reappreared. As it was, the horse was not letting me has the golf ball back, so I went knee first into the stable door till he relenyted which sounds bad enough. Wait till you hear the Saturday incident from which I have yet tcover.

Supporters Day… People, horses, and children … young ‘Barry’ anyway!

The final part of week is the other major highlight. The open day for the supporters of the local Christian Social Enterprise charity. To protect the safety of the young in’s I would not care to mention the name of the place. The day started well enough, with a service, thanking the Lord Jesus for all he has provided for us this past year, all that he is providing and praying and trusting that he will continue to provide. I chose my own role for the day after that, talking to the parents of friends, many of whom I know by sight, others I had met on random occasions such as the couple who’d helped me cross London two years ago. I decided then to seek out those in wheelchairs or whatever, the ‘crip brigade’. I made friends with a young lad who gives all the pocket money to us, talking to another wheelchair user who explained the joys of hand gliding (paragliding?) with a chair. I then came across a couple who had been to the farm that frist year. Was lovely to swap geography, and stories with them. Before lunch I had met a young lady called Eleanor and her mum Janet, who explained Eleanor could not see me but could hear me, so talked to her of the horses, and took Janet too them. However, when we got to the same horse who caused me chair related mischief on Tuesday. I should have stayed out of the way! I clearly have not learned my lesson! My chair is now minus the button which ‘reclines’/ tips the chair backwards. I did rescue it from the hourse but it fell of my chair at one point before I lost it. I shall have to phone the wheelchair servicing co,many firs thing tomorrow to figure out how to repair it as quickly as possible.

I had better get myself off to bed. Before I go though, one final word about paralympics 2012 The speakers did not half talk a lot of nonsense. Lord Seb Coes gems of wisdom included the lines: “we will never think of sport the same way, and we will never think of disability the same way..” How is he so convinced that years of discrimination and so on has been turned around in te course of a mere 11 days. He’d have to start by changing governments attitudes to both disability and to disabled people. Another man with high expectations of disabled people is Sir Philip Craven who talked about a small boy who had been reading Treasure Island with his mother, who asked him about the main character, expecting her son to say the man was a “pirate, instead he said “athlete” The implications of this, is to assume that all disabled in some way are ‘athletes’, or can become athletes which is far from the case.

He also committed a further gaffe , which to me was worse than the first, as he claimed the magic of the Paralympic  Games would last  for an eternity, what a lot of RUBBISH!! Sorry to sound particularly Bible bashing, but he really has not thought this one through.My thoughts seemed to be echoed by my friends, including Partakers_Dave  and, and Pam who said she was “worried that such amazing feats will be expected of all disabled [people]in a way that will be even more disabling”. I often feel that disabled people are made to feel the truth of this already as ” superhuman feats’ like being able to work, find and maintain a job is expected of all of us who are out of a job, whatever the reason may be.The last word goes to Clare Balding who says””this will all only matter if it changes the way you think, the way you feel” — Clare Balding. I hope she was talking about attitudes to disability then, because it would have been one of the few sensible things said all night.

Over to you!

I’d love to know:

  • what did you think of the closing ceremony? The good the bad and the ugly?

  • what now for the future of sport

  • Or any other comment you would like to make on any aspect of this blog?!