Author: jacksdavie

Giggly Scot who uses wheels to get around. Experienced at living with chronic pain, chronic illness, an ostomate and #nursinghomedweller. Christian, #spoonie, writer, colour-in-er, avid reader, snackaholic. My blog's a hybrid of all the different parts of my life. #wheels #pain #care #nursinghomedweller #mentalhealth #family #friends #faith, politics, and life in the UK as a woman in her late thirties defying most norms!

helping hands (over and over again)

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friends

I really wish I could answer this as it’s such a great question. It’s also incredibly appropriate to my life, as other people help me several times over every day. However, my mind has gone blank. I can remember snippets of help; two girls who washed dishes for me when I was unwell in my first year at university, others who accompanied me to hospital when I was extra poorly, many strangers who have tied shoelaces, helped me on or off the bus, back into my wheelchair when I’ve fallen out of it… as the cliche goes, the list is endless.

Not forgetting the many people over the years who have made meals, and washed up afterwards. The friends who really stand out are the ones who have done much to help me, just by being them. Those who never give a second thought to helping time and again; always on the end of a phone, or regularly meeting up for coffee or lunch, giving me a break from the monotony of routine, those who make me laugh at the end of bad day, yes, it’s friendship, but it’s friends who do more without even thinking about it. It’s testament to them that no one time they helped stands out. There are a few special ones. and even one special one I can think of who I cannot name here. There are also carers who become friends. though that brings it’s own problems. It’s one thing to help once, and another to help over and over again, so, thank you, my friends. My 30th Birthday Party was so special, because of all of you. Love you all very much!

Exercise, but not as you know it…

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I’m aware I’ve done the absence – post – absence – post thing a few times now. I am sorry about it. It’s either been illness or just not having the energy or headspace to write. it had slipped down the priority list somewhat as i might have said before. As of yesterday though, I am determined to begin again.

I did truly want to begin (again) on Thursday, but I was simply exhausted. You see, I woke up achy and sore that morning, more than I had for the past few. I knew I simply had to go though, no backing out, just grit my teeth and get on. And so I arrived at my destination slightly later than expected, more tired than I wanted to be, helper in tow. I handed over the form, which thankfully, this time the doctor had signed the right place, but it was close!! I watched her check the form as i chatted to a physio, and introduced her to my helper. Form complete it was time for the tour. The pool looked lovely, shimmering with heat though. After a short search, one of the physios found us a free room to change in, and off I went. Tracking Hoist next, in my day of firsts. Once in the pool, a cushiony pillow behind my head, I lifted my body so the sling could be detached and the float attached. To my horror, I was being given ‘quite a bit of support’ from both physios. At that point my mind flitted to the past, the monotonous lengths and the medals. After a short time floating, I was helped to stand, supporting myself in the corner of the pool, one arm on each side. The exercises  continued at a acceptable pace, while my mind railed against the simplicity of the moves, things that were once manageable were now embarrassingly effortful. One by one, each one I could manage added to the draft of the ‘exercise plan’.

Eventually, the physio I knew best suggested I swim, so I began to float on my back. Well, I mean I hoped to float on my back, but began sinking fast in the middle, as I had when I last attempted to swim. One of the physios came alongside and explained that she would have to support me while they consulted between themselves how much support I needed. Very quickly, they decided on a ‘noodle’, which the supporting physio quickly added, while asking me to try again, while never leaving my side, and  helping me spin round before I hit steps, or the side of the sitting hoist. We finished with a few ‘warm down exercises’  before ‘chucking out time’. Each person or group of people is only allowed 20 minutes in the hydrotherapy pool due to the temperature/heat the pool must be. ‘Them’s the rules’ as it were. My attempt at using the chair hoist to exit the pool was rather more successful than anyone expected. Someone (I forget who) made the hoist the same height as the shower chair and I simply slid my bottom from one to the other – result!!

Once finally showered and dressed, we opted to visit the cafe before the taxi home. I chose A mug of tea and a ‘lighter breakfast later’ which my helper and even the physio said I had earned.(FYI: this consists of one sausage, a rasher of a bacon, a friend egg, a tomato, some mushrooms and a tomato in place of beans). I decided there and then to make it my main meal, as calorie wise it seemed the most sensible thing to do.

Once in the taxi, it was not long before sleep beckoned.’ Sliding out of the taxi, my helper told me I was ‘asleep on my feet’, Making an effort, I got to my door in my little chair without falling asleep. The helper made up some dioralyte and a coffee, and went on her way, which incidentally I didn’t drink. I slept sat up in my chair for three hours solid. After this I cooked and ate some pasta before falling asleep again, waking only to the sounds of the buzzer when the carers arrived Having slept so long I decided to say up for a bit. Predictably I fell asleep in my chair, waking when the phone rang. Call finished sometime later I crawled into bed and slept more or less solidly all night, waking exhaustedly.  So far so normal for someone who gets next to no exercise.

Though by now, I’ve had a days grace, I am still exhausted. I fell asleep as I wrote this. I am determined to finish this in good time and attack my to do list after lunch, so I get a good rest tonight and hopefully avoid falling asleep in church tomorrow!! I am already thinking about what to write and auto-publish for tomorrow, so watch this space!

__________________________________________________________________

Hydrotherapy is a form of physio/physical therapy exercise done in a small pool, heated to a correct temperature. The heat is good for muscle pain/spasm/joint pain, and so on. The water aids bouncy allowing the likes of me to exercise in a way I couldn’t on land. It is the least restricting form of exercise and can make a big difference for some individuals. My exercise program includes side-stepping, walking, attempts at pelvic swivels to build some kind of ‘core’ from the natural resistance of the water.

A week of two halves

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Grapefruit; 2 halves
Grapefruit; 2 halves (Photo credit: Wikipedia)

A week of two halves, this was

Joy and Pain

Ecstasy and Agony

Mountains and Valleys

Letting out and keeping in

Talking for hours, and keeping quiet

Memories, and things I will never experience

Being there, and wishing I could be there

The seen and the unknown….

loving and praying despite it all, because of it all

Until Next Time

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This post is part of Five minute Friday. Please leave a comment on this post below to encourage me and then take part yourself. Simple!

more space please!!

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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!

 

Billy (the kid)

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Golf ball
Golf ball (Photo credit: Wikipedia)

Some days, I fret about what I will write, and other days, a post will write itself. Thankfully, this is one of the latter! I needed to go back to sleep this morning, which I did, but forgot to set an alarm. I woke about 1030 and managed to get out of my house in fifteen minutes flat, since care had got me ready to go out a few hours earlier.

Once outside. there was a wee boy running up and down the pavements with his scooter. He later told me the pavements are better up here than where he lives! I am sure I have seen or heard him in the last couple of days. First thing is, he says hi, and asks me if I know what the noise is. I say no, and he tells me how annoying it is. I try to indulge him a bit but think, right I better get moving. Next thing is, the boy is asking about my electric wheelchair, wanted to know what each button on the control box does and test it out. I suddenly think. where would Jesus be? Of course, he would keep the pharisees waiting at Synagogue and talk to the little boy. I relax. and let him push and pull the chair using the golf ball, spinning me round in circles and tipping the chair backwards. In between he asks me why I use a chair, can I walk a bit, and where was I going when he saw me? All natural questions, and somehow it feels much safer to answer while he’s messing with the chair. His next statement took me by surprise though…. he said he wanted a chair too!! He said I could have his scooter and the golf ball and he would have my chair (cheeky or what….!!)

i thought that was the end of it, as Billy spun me round in the right direction and shoved the golf ball forwards. I take and go the long way round, following flattest path to the end of the street and across the road. Quick as anything, he’s caught up with me, asking why I didn’t cross at the dropped kerbs in the middle of the road. I show with my arm as best I can the path leading from the dropped kerb and how steep it is compared to the path I used. He gets it. He spies the grass, and decides that’s where the chair is going too. Thankfully  the grass was dry so the chair coped fine. The only hiccup was were were too near the main road for my liking!! I veer off the grass, and he suddenly says he’s off. He shoves the golf ball on the chair in the direction I’m going and speeds off, back towards home, right down the ginnell at the side of my house, and beyond.

I went to church with a smile on my face and a prayer in my heart, for Billy. Not caring that I was late, even though Billy said “You’re allowed to be late because you have a problem….!!” I met Billy BECAUSE I was running late!! Also, if only all Disability Awareness Training was as easy as it was this morning, ours would be a much more compassionate society to live in!

local observations

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This post is a response to the Weekly Writing Challenge, asking for descriptions of a person, place, and thing.

A Person

Being me, she was the kind of person I would notice, I never did find out her name. I didn’t want to interrupt the girl’s time with her mother, or upset her in any way. At least, I think the woman with her was her mother. They did look a bit alike. The girl herself had a wonderful mega-watt smile; the kind that is instantly contagious. Beautiful girl, sat in an ugly standard-issue wheelchair, of the sort that is seen everywhere: steel frame, red sides, 4 small wheels, so not very easy to push, either. Heavy and burdensome, though covered in stickers to make it look a little more cheerful, and somehow also made it seem more personal. The girl herself was very pretty, brown hair in a pony-tail, brown eyes, neat features, and as I’ve already said, her infectious smile. She wore school uniform, though I do not remember what colour, this being some time ago, and gave no clue as to her age. There seemed to be no personalisation to it as other teenagers might do. It wasn’t until sometime later that I realised this girl had down syndrome. I guess that smile had something to do with it. I do not remember what the girl had to eat or drink, though I remember juice of some kind, perhaps a “fruit shoot” or similar, as I know the cafe sells those. The girl and her companion be they her mother, a carer or guardian, did not stay long.

A place

The cafe itself attracts a whole mixture of people, though I have never seen anyone go there who seems particularly well off. I have been there several times, sometimes months apart. To me, the place is either mobbed or empty, there is no happy medium. It is unusal in that it is entirely staffed by volunteers, many of them elderly, or disabled in some way. One might assume this is because it is often elderly or disabled people who have the time to volunteer, or the desire to do so, and therefore make volunteering a priority. There is always a cheerful atmosphere about the place, whether it be busy or quiet, and Christian music playing in the background. I always find there is a peace about the place which is attractive. No one ever seems in a hurry to leave, or in a hurry to make you leave. After costs, any profit is ploughed back into the place, or given to charity. There is a notice on the wall on the left-hand-side which explains this, and lists which charities received donations in which year and how much for. Alongside this there are sometimes framed certificates from the recipient charities thanking the cafe for their donation. On the same wall, nearer the door there is a large grey notice board covered in pieces of paper, and posters of all colours advertising local information, services, or events. Other places on the left-hand and right-hand walls are taken up by colourful posters displaying clever religious slogans or bible verses. I do not remember off the top of my head what is on the far wall, as it is a good few weeks since I was inside the cafe. On the wall nearest the entrance to cafe, a solitary blue door, much like the front door of a house, is a large window made up of several pains of glass, each one held in place by a wooden frame painted white. In front of this is the unofficial “trolley park” sometimes occupied by buggies or prams. The rest of the space in the cafe is taken up by several wooden tables, which I imagine not to be solid wood, but the type that has a wood-effect covering on the outside, with a circular metal base, and one wide leg in the middle. The vast majority of the chairs are also wooden, although there are two small brown-leather (faux-leather??) sofas with a small coffee table in the middle, next to the music speakers, and the specials board, contradiction in terms because extra dishes are written plainly, in white chalk on regular blackboard slate and are generally nothing fancy, though the regulars seem to like them. Near this is the counter, with a glass shelve unit which displays the cakes and tray bakes and keeps cans and bottles of pop cool. At the other end of the counter is a standard regulation automated till. Behind this end of the counter is a back wall covered in shelves and a unit which contain cups, saucers, mugs, plates, There is also a big dispenser which contains a large jug of filter coffee. Very good it is too!

A thing

The above is as detailed a description of the place as I can summon from the brain, but the thing which really captures my imagination is the glass-fronted cake-counter. As I can see it now in my mind, there are three categories of cake — old fashioned favourite, the simple classics, and new fangled favourites, so they might have butterfly cakes, which remind me of bake-sales at school, classic carrot cake with slices cut out, and American style chocolate brownies. I seem to remember other things such scones, flapjacks and mars-bar crispy cake, all of which remind me of being at my Grandparents house for tea on a Friday night while I was growing up. A treat then as now, and all home-made, familiar and comforting. Apparently the lady who makes the cakes for the cafe is a lady who makes cakes for a living anyway. Nothing in the cabinet stikes me as being overly fancy; however if you are looking for good quality cheap coffee and tea and an afternoon treat, or a morning bacon roll and pot of tea with a friendly atmosphere and a warm welcome, look no further than ABC!!

 

 

Drum-roll please!

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Hand on keyboard
The picture shows a laptop keyboard, with a hand resting on it as though someone is typing

Today’s ‘Daily Prompt’ Question is one of the best; simple, yet profound:

Why do you blog?

For me, the answer is straight forward. I blog for several reasons.

1. A creative outlet

Firstly, because my parents encouraged me to find an outlet which used my gifts and also engaged my brain. As a person with significant impairments, it is very difficult to find enough to keep me occupied without exhausting myself at the same time. I have discovered, that this is a common problem. To know I am not the only one who faces this precarious balancing act on a daily, perhaps hourly, sometimes minute-by-minute basis is a massive relief. It is also useful to share coping strategies and tips, and simply to talk about the frustration this particular battle can cause. There are days where I am simply too exhausted to type. Additionally, if another part of my disability is out of kilter, say I am in excessive pain, or the bag is being particularly difficult I may well have no energy or head-space left to blog, as has been the case of late. That said, to have found an outlet which I enjoy, uses my gifts, engages my brain, and connects me with people who have similar interests is a joy. I have to admit, I needed encouragement, or a ‘boot up the backside’ to actually start writing. Bryony had been telling me for weeks that i should start a blog. When I joined twitter, she introduced me to Bex as the friend she had told her about who was going to start writing for BigBible, which Bex now works for, as they had been on the lookout for someone like me. Introductions made, I had no choice but to start. This was the boost I needed. It was a thrill to be one of the #digidisciples whose work featured in the top ten of most shared posts of 2012. The reaction to my first post was something which has stayed with me ever since, and I often bring to mind when I am in need of encouragement with my writing.

2. God is using me, and my writing

This reason for blogging is also connected with the first point. It is God who has given me the brain and the gifts necessary to make a good go of my blog, and my hope is to use it for His Glory, as should be my aim with everything I do. Many of my non-Christian friends or family like to read my posts, so this is a motivation for me to show how my faith makes a difference to the difficult times in my life, of which there are plenty. I hope and pray this will be a witness to those who read it. I decided early on that as much as possible I would keep my blog ‘real’, by writing honestly, including the good, the bad, and the ugly, without dramatising things but also without glossing over the tough stuff. I wanted mine to stand out. Not just a single-issue blog but something that reflected the variety of my life, and also so that as many people as possible could find something in my writing which speaks to them or with which they identify. Occasional feedback from readers is proving this to be true.

3. Semi housebound, but reaching the masses without leaving my front door!

For my first #digidisciple post for the Big Bible Project,. I wrote about the benefits of social media in general and twitter in particular when it is impossible to interact with the world in other ways. To go out, I have to book care, of which there are limited hours in a week, and/or a wheelchair taxi. Many of you reading this will understand just how expensive this can be. This all also depends on me having the finances to cover the cost of transport and having a good day energy wise to be able to go out. For both those reasons,. the places i go to are often limited to a specific list of places, or if in Leeds, a specific area meaning I frequently meet the same people. Online, however, it is a different story, and I can reach a much broader audience. My father recently referred to me as “a master blogger”, and commented on,the variety of people who read my work. I aim to be different from disability activists, as I do not feel this is my gifting, there are others much more adept at lobbying the policy makers, council leaders, whoever needs to be told. Having said that, I aim to inform as many people as i can about the complexities of life with significant needs, and deep Christian faith and to live as full as life as I can. I am aware of other disabled people I know who live fuller lives than I, even with a more significant physical impairment. Though I would sometimes wish my life was more varied, in general blogging is my way of being ‘out and about’; reaching people I would not otherwise meet and finding a creative outlet, while having a lot of fun at the same time!

The explanation for my absence….!!

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Dear lovely followers, (should I have any left?!) If you’re reading this now, thanks for sticking with me! As you might have noticed, I haven’t been writing much over the last week or two. There is more than one reason for this, but I can only go into a couple of those here. You might remember reading about my little accident a couple of weeks ago now. I thought then I hadn’t done any lasting damage, not even to my knee, but unfortunately, I have. How long it may last, I don’t know, but the healing process may take a while. Though I live in England and have the backup from the NHS, I’ve been having to fork out (pay up!) for physiotherapy, originally for chronic pain in my back. So bad, that had I not gone private, I would have had to start being hoisted, say, from my chair to my bed, within a few months to a year, because of the severity of the pain and the level of restriction the pain caused. Fortunately, it is making a difference, but because this meant I was already regularly seeing a very good physiotherapist, I knew that if between the physio and I we could work out what the problem with my knee was, she would give me as good advice as she could. I was getting to the stage with my knee where the pain in my knee would cause my leg to collapse underneath me. An absolute nightmare for anyone with any mobility problems, never mind how someone who has mobility as poor mine is. I am still attempting to transfer front on, with the help of my zimmerframe, rather than side on with a banana board as the strength, co-ordination, and control in my arms is far from adequate for this. For those of you who know about chronic pain and/or life altering physical disability, I am sure ou can well imagine how difficult tranferring had become. Aditionally, my leg collapsing would cause my knee to spasm, which would greatly increase the pain, which would mean putting even less weight on my leg than I could all ready…!! This meant I was willing to let the physio do whatever it took to work out why I was in pain and how to help it get better. What she did have to do may well may you wince, as she had to ‘create the pain’, i.e. get me to take two or three steps so she could see it collapse, and once I was sat. prod my leg to fine out where the pain was. Yes, it was a painful as it sounds!! It turns out, I have damaged a major nerve at the back of my knee, which wraps round the side of my knee. The whole thing is badly inflamed. Apparently the nerve at the back of the knee splits into two, there is the siatic nerve, and the other one, which I cannot remember the name of! Once this was diagnosed, my lovely physio-terrorist (sorry, therapist) was able to give me advice. Advice so good, it has already helped improve my knee by decreasing the number of times it collapses, reducing the resulting spasm and increased pain. Anyone with chronic pain, or severe disability or both, will tell you things often go in a vicious cycle especially with spasms or pain. Breaking that cycle can be heinously difficult, but once you do, it can make an enormous difference. P.S. For anyone who would like to read more about the causes and effects of pain, see Health Activist, Mrs. Rants excellent blog. ————————————————————————————————————————–

I wrote the majority of the above last Wednesday, but had no time to publish the post. I am finishing this in the early hours of Monday morning, a day and a bit after early 30th birthday celebrations. My lovely friend who organised the bash asked my Dad to say a few words. I admit to having moist eyes! I may write another post explaining a little of what my Dad said that night, but he also referred to my blogging skills when listing some of the things I am now filling my life with. Apparently, I am a “Master Blogger”!! I am well and truly back. For your amusement, I have included a photograph of me at my party, which the lovely Bryony took of me.

The photo shows me at my 30th Birthday party.
I am wearing a black sash which says “Birthday Princess”, and I have a large pink badge pinned to my jacket which says “I’m thirty, pour me another”, with a picture of a wine or cocktail glass on it! I have a big smile on my face. I didn’t realise until I saw this photo that I am sat underneath one of the ceiling lights, so it looks like I have a halo above my head!!

Five-Alive

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Daily Prompt: Five a Day
You’ve being exiled to a private island, and your captors will only supply you with five foods. What do you pick?

I guess not much of what I am currently surviving on could be supplied on an island. Soup mix, bread rolls, baking potatoes, and pasta. For a start I would need a sauce to go with the pasta and at least a couple of ingredients to go into it. That means, pasta is out. Baking potatoes might be okay as I could cook them on a fire, if I knew how to build one. Bread rolls would deteriorate in the heat too. Ready prepared soup mix is a supermarket thing so that’s out too.

The only food I have so far are baking potatoes. Sqaush, perhaps, for roasting. Bananas, as I reckon I would miss them. Two more.  Beans of some kind as they are filling so I could eke out the supply, and flour to make some kind of basic bread, assuming I had some water. Well I think my list is complete. Which foods would be on your list?