Tag: care

From a modern flat to a big, old home….

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A recent photo of me with my nephew, taken in my new room in Nursing Care facility where I now live. 

From ‘independence’ to full-time Nursing Care

In the last little while, I’ve moved into residential care. Not a decision I took lightly but living independently was seriously endangering my mental health. Respite was arranged in a hurry as I desperately needed a rest. A few days after my arrival, I was a different person. I’d had more sleep then I’d had in a very long time, in part due to sleeping on a specialist mattress to try to ease some of my pain. I’d had proper meals, and help with the projectile stoma output which had been giving me so much grief at all hours of the day and night. I very quickly made friends, and there are as many activities available as possible given that the home is maintained by a national charity, and as such, relies heavily on volunteers. I did play more than one game of scrabble that first week, which I loved.

At the end of the week, I hadn’t heard if there were any changes to my care plan at home and I knew I couldn’t go back for any length of time and not get in the same mess. I knew deep down there was no money for any more care at home. Long story short, I’m now in residential care full time. I’m much happier, certainly safer and healthier than I was living on my own, latterly.

Disconnect in Well-Connected Times

Of course, as with any move, there will always be teething problems. These have become apparent very quickly. The manager is trying hard to get something done about the sweltering heat, and the problems with water. The care I have is generally absolutely brilliant, especially now people have had time to get used to the idiosyncrasy of doing stoma care on my behalf. I may have startlingly high levels of pain and fatigue, and the medication needed to manage these has it’s own side effects. Staff have begun to recognise the signs, and remind me to rest often. I am slowly developing my own routine in amongst my varying levels of health. I love visitors and thrive on being around people.

There’s just a weeny problem. The house is old, and has been extended. The house has been blamed for the non-existent Wi-Fi in upstairs rooms but that was only part of the problem. Finally, a solution has been suggested and will hopefully be implemented fairly swiftly. It needs to be. After all, personal care and support is paramount, but access to social support, which arguably includes Wi-Fi is nearly as important. I look forward to the day when I can skype when I chose to, including family as well as my therapist. I am almost wholly dependent on social media for keeping in touch with my wonderful friends, who I really miss, as well as church family and blood family. I also rely on Wi-Fi to conduct research for blog posts, and find other sits to write for. Being a girly girl, I make occasional purchases too.

My life has diminished enough without losing touch with people or losing the blog altogether. These are crucial contacts for my own sanity, some of whom offer online support with my chronic illness and disability. Why should any of this have to suffer simply because my circumstances have dramatically changed? It’s time residential care caught up with the times!

Over to You:

Do you think WiFi access is important in today’s world? Why, or why not?

Do you live in supported living, residential care or a nursing home, is Wi-Fi access considered a priority? Should it be?

Do you have any other comments to make. Perhaps you disagree with me. I’d love to hear from you!

In recent weeks, I….

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Hi everyone, here I go with my latest attempt to kickstart my blog after some months of absence. Finally, finally, I feel ready to start writing regularl
y again. Hopefully, I’ll manage to post three times a week. For now, lets revisit the last few weeks in my world! In the past few weeks, I:

Have been concentrating on all the basics.

For me, this has meant more than just getting to the end of each day in one piece. Just getting from one hour to the next has often been a challenge, either because of a much disrupted sleep the previous night from insomnia, pain, (be it joint, stomach, or back) or due to my my highly functioning stoma, meaning I am up to empty it several times a night, despite using an appliance with one of the largest available.

If I settle down for a nap the following morning after a bad night, one hour, even two is never enough. And yet, keeping going is not an option either, as I am extra uncoordinated, clumsier, and even less able to think straight than usual. The problem is, after such a long nap, I have no inclination to write.
Additionally, i’ve had never-ending lists of admin, be it phone calls, emails to write, forms to fill… Unfortunately, these things have not been the only difficulties.

Have been confined to one room, for the most part.

After all that busyness, I am exhausted. This has been exacerbated, at least for the last six weeks, because of the unreliability of my electric wheelchair, meaning that even sitting still is hard work, as I need the support which I have from the pressure cushions on my chair, to enable me to sit up comfortably with less effort, less pain, improved balance and posture, and without putting undue stress on my back, which is already incredibly sore most days. Even when my wheelchair has been returned after being away for repair, I’ve been lucky to get the use of it for a full 24 hours without it stalling. As it is, it has stopped altogether, and is awaiting collection for the the fourth time in six weeks. How do I manage without such vital machinery? The truth is, I don’t! For the vast majority of this time, I’ve been confined to one room, usually my bedroom, as I have a profiling bed. This means I can press some buttons to adjust the mattress (in this case, a high-pressure one) to more effectively support my posture, and change my position when I am uncomfortable or in pain, without actually having to move my body. I am incredibly grateful to have access to such equipment, as without this I would be in constant unrelenting agony.
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Fortunately for me, I have occasionally been able to leave the house in my (ill-fitting, too small and unsupportive) manual wheelchair if a carer, family member or friend has time to help me. This has mainly been for hospital appointments or the food shop. I’ve been unable to attend church in this time, as spending long periods of time in this manual wheelchair has done, and would do much more harm than good. While I am awaiting a permanent fix or replacement for my electric wheelchair, the confinement continues.

Have begun a tailor-made eating plan!

What am I doing with my time now I’m even more restricted than usual? In part, I’ve used the
time to plan food shopping, cooking and eating meticulously. In partnership with my dietician, I am eating much more lean protein to help fill me up without added bulk (or calories) in smaller, more regular meals and snacks. Due to my unique circumstances we’ve had to devise inventive ways of including all necessary vitamins and minerals in my diet, without me having to prepare, cook, eat and attempt to digest lots of fruit and vegetables, for me to struggle to absorb the nutrition anyway due to the shortness of the piece of gut I have left, and reduce the risk of blockages in the stoma, or over-filling of my ostomy bag. What a challenge! (Apologies if you were eating while reading this!) With help from care staff, also I’ve been using a reasonably comprehensive soluble vitamin and mineral tablet on a daily basis, to boost anything I am managing to absorb. As recently as the last few days, on advice from a GI consultant, I’ve recommenced a fluid restriction in combination with a litre of dioralyte daily (rehydration salts and electrolytes). All of this, though effortful is giving me more energy, helping me lose weight by reducing the temptation to snack or comfort eat, and generally feel better about myself. The results are also evident in regular blood tests. A long hard slog rather than a quick fix, but will all hopefully eventually be worth it.

4. The once gaping wound in my abdomen is no more!

Said wound has finally healed, though it needed loads of TLC and took an arduous five months to heal, some 3 months less than my fantastic surgical team expected. My surgeon himself, had some doubt that the wound would ever heal completely, but at a joint medical/surgical appointment last week, it was lovely to be able to tell in person that it had. The doctor said I made the surgeons day. I’ll bet they were glad to have good news for a change, especially given my prognosis and the miracle that I am here at all. As a Christian, I believe that ultimately God has orchestrated this healing, though other factors have undoubtedly helped including keeping the wound free other than the pre-existing infection on the outside of the wound, keeping it clean, and mostly dry, even while washing my hair, no mean feat in itself!

What else have I missed?

I have spent time doing the things I love again: cooking, baking, reading everything from ebooks on my kindle app on my smartphone, blog posts, news articles, catching up with friends family over occasional coffee or meals at home, or even more occasional meals or coffees out when accompanied. I’ve participated in church services online through skype and facebook, and even led my first one last Sunday. A separate blog post on that is to come. In the meantime, contact Dave Roberts to find out how to get involved in VOWchurch if you would live to, or even if you would just like to find out more.
Also on Facebook, I’ve joined a campaign called “Get Your Belly Out”, begun by four amazing yet ordinary girls seeking to raise awareness of Inflammatory Bowel Disease (IBD), raising money for a cure, and building up a loyal, friendly, support community in the process.
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Lastly, I’ve participated in a webinar (a seminar on the web) or how to write memoir, tips and tricks to use, and what to avoid! This was organised by Writer’s Digest, and run by an agent in America on a weekday lunchtime, broadcast all around the world to aspiring writers in various time zones, 6 pm in the evening, in my case! I managed to stay awake (hurrah!) content rating for virtually the full 90 minute seminar, having learned lotads. I’m now working on the 1500 words to email to the agent, due in a mere 9 days (eeek). On that note, I must scarper!

Age, not just a number…

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Milestones, done differently…

I have a pretty good idea of which milestone I reached at which age, from talking to my parents over the years, from photographs or from my own memories. I was late to start walking and talking for example, though I’ve not stopped talking since. I was 5 or 6 when I put my crutches in the back of the wardrobe, and didn’t look back until I need a mobility scooter aged 18 at university.

I was 12 or 13 when I started worrying about boys, though wondered if anyone would ever be interested in me. I remember well the love letters from a boy called Danny when I was 14, who moved away shortly after, but I don’t think of him as my first proper boyfriend. However, by ‘proper boyfriend’ I mean someone that I really, really loved. That only happened last year, just before my 30th birthday. Things like that make me feel old, especially when I consider that by 25, my Mum had two children, effectively two babies, because of my level of need. I wonder now if I’ll ever meet someone, or even if I need to.

Babies everywhere, but not mine!

I don’t know whether I ever thought I would be married with children by this stage or not. I think my mum would say the former. I am more and more aware of my age as more friends get married and/or have children. Even the friends who like me were waiting to meet someone are now married. I’ve got to the stage where I can be genuinely happy for them, meeting up with a close friend and her baby regularly, who I adore. Also, Sunday school will have exploded in numbers in a few years. I love that I’ll still have contact with lots of children because of church. It’s funny, no way would I have said that before I got my electric wheelchair, but it somehow makes me more approachable to most children, and has helped me be much more comfortable talking to them. I am more at their height I guess, and some kids are fascinated by what the chair can do, or the golf ball controller.

Am I always defined by the number I am?

Recently, someone told me I ‘look good for 30’! A backwards compliment, for sure! I definitely don’t feel 30. Some days I feel old, when the routine of care and the sameness of every day gets me down. Other times, I feel young and insecure as though I were a school kid again… usually when something goes wrong in the house and I don’t know what to do.

I might like to do Uni over again, with carers to do personal care, and PA’s to help with library access and so on, as I didn’t have care until a couple of years ago, and no PA till third year. I wish I had been strong enough to ask for these helps though and been able to concentrate my limited energy wholly on my studies. I don’t think I realised I was entitled, or thought my disability was ‘bad enough’ even though tiny things sapped my energy. It’s so easy to say ‘what if’ and ‘if only’ though… almost everyone must have some regret about something. I was so intimidated by everything too, fearful, and never feeling like I was ‘good enough’ to be there… I guess that is where some mature students have the edge. Do I wish I were a different age though? Probably not, unless I had more confidence to with it.

My Grandparents, examples of how to age!

On a slightly different tack, thinking about age makes me think of my three grandparents, who are 78, 76, and 88. Generally they all keep in fairly good health and all have active lives. They are amazing, and definitely defy stereotypes of ‘elderly people’. I hope I am like them when I am older. All of them look young for their age. My Gran recently came to visit, and someone asked how only she was. When I told them, their jaw dropped in shock, and they said how strong and healthy she seemed for her age.

In some ways it is easy to tell they’ve got much older (for example, my granddad has two hearing aids, but he is 83) I don’t remember him having any health problems at all until a few years ago. Trouble is, aside from Gran’s diabetes, I have more health problems than them all put together!! Maybe I am the aged one?!

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I used the ‘Weekly Writing Challenge‘ prompt from March 10th, as inspiration to get me writing again. The prompt asked what age meant to each blogger. Above is what it means to me… but what does it mean to you? Why not have a go at your own post on ‘Golden Years’ and aging in general? (Click on the link in the sentence above to see the prompt) I’d love to read it!

Care, employment and families – big week for disability

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Trust the Government to squish debates on such big issues into the last week in the hopes not as many MP’s will attend / notice / care. As usual, as mentioned by Scope, the numbers of people now not qualifying for care, and therefore having little or no help to prevent a health or care crisis such as a hospitalisation, means the cost to taxpayer escalates despite attempts to save money. Typical Government too, to underestimate how much money good, ‘preventative’ social care costs.

Also, it has not been mentioned here that cuts to disability living allowance -500,000 less people are eligible or will lose out when assessed for it’s replacement. This matters, because the people not eligible for social care might have had the funds to pay for something, at least, but will now have no plan B, surely increasing demand on all fronts. Also, people eligible for social care could previously use their Disability Living Allowance to ‘top-up’ their care, though for many, once assessed for PIP, their benefit amount will be less, if eligible at all, and therefore a further gap in funding exists. The only funding which ‘tops up’ the gap a little is that after several attempts, the Government were unable to close the Independent Living Fund, used to pay for care for those people judged most severely disabled, after the decision was quashed by a last-ditch appeal attempt. However, as this money goes to a relatively small number of people, there is still a massive shortfall. Yet again, the Government has failed to understand how difficult, and complex life can be when you are sick and/or disabled, and just to be seen on a par with your peers requires significant mental and physical energy, and considerable extra costs (phoning ahead, transport, planning for toilet stops, meals, medication… heck, just getting up and dressed even with help, can be beyond me some days!! Those who are able to be on a par with ‘normal people’ in the workplace, in home-life, and comminity life can, and should be given this support — yes, perhaps at quite a big cost. However, to not plough money into it will cost something greater — physical and mental health of sick and/or disabled people will deteriorate costs health and social care systems more in the longterm, and especially where there is also increased pressure and stress from wrong benefit / tribunal decisions too, lives.

The one with the wedding (2)

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the picture shows two intertwined gold wedding bands
the picture shows two intertwined gold 
wedding bands
http://www.sxc.hu/photo/1326034

A year on from the last wedding I attended, this past weekend, I went to another. This time, not of family, but of dear friends. I once looked into carers accompanying me to these things, but between their costs, my costs, and agency fees, it’s far too expensive. My Mum kindly steps in to assist me, and to do the driving, the easiest way of travelling, with all the stuff I need, even for one night. Arrangement was, I would pack my own bag the day before, so it was ready for Mum to put in the car. In my wisdom, I didn’t write a list of what I might need. I need so much, even for one night, the thought of writing a list was exhausting in itself, so I decided to ‘wing it’. This was largely successful, except I did leave one thing at home – my box of medications fondly known as ‘the UFO’. I was 30 minutes into the car journey before I realised this, meaning that we would be late for the wedding if we went back to collect it. I chose to soldier on.

My friends’ wedding was wonderful. The Church of England ‘civil’ part of the ceremony was conducted by a friendly, jovial vicar, who seemed genuinely fond of my friend. This wedding was different. The friend I now know better is a Christian, but my other friend, the one I knew originally, is a Messianic Jew. This meant that there was a wonderful mix of official ceremony, favourite hymns, combined with Jewish elements including a huppah, a canopy under which the ceremony was conducted; a glass being smashed underfoot by the groom, a chorus with a jewish tune, (sorry for the generalisation, unsure how else to describe it). At the end, the Aaronic Blessing (in Numbers 6) was read in both Hebrew and English. I’ve been to many weddings, and this one really stood out. Not just because of the elements recorded above, but also because this was a wedding which focused on their Saviour too; from hymn and reading choices, to the post ceremony message or sermon.

The teatime reception was fantastic too. Mum and I were seated next to a wonderful couple with whom we could easily converse, as we quickly discovered we had things in common, and both people were full of mischief and stories. The meal was one of Yorkshire portions – double helpings of meat, massive Yorkshire puddings, (made of batter, for anyone unfamiliar of them) at least three vegetables done different ways, and two lots of potatoes. The speeches were interesting and witty, at times sick-makingly romantic (from the groom, obviously) who had written parts of his speech in Hebrew (with translations into English) for his bride.

The evening disco had a great mix of songs, (great at the time, but now none of them spring to mind!!) Other friends arrived at the beginning of the evening too, which was lovely, though by this time it had already been a long day, and a massive effort to last that long. We left about 10 pm, which meant I was asleep from 11 pm. I was so exhausted I slept for 5 and a half hours continuously before my body woke me – my back having seized completely (which it does at home for less sleep) meaning without my electronically controlled hospital bed I needed a lot of help simply to sit up, shuffle to the edge of the bed, stand up, and get to the bathroom. Normally I would use the remote controls on the bed to sit, then effort-fully and painfully swing my legs and shuffle, transferring to my electric wheelchair which I use to get to the bathroom. It was during some of this that I prayed God would help me cope with the remainder of the weekend without medication, and with chronic pain, plus the emotional toll of being without ‘special someone’.   A picture came to mind, of sitting in Abba’s lap, with his strong arms continuing to hold me tight. I kept this in mind all night.

(N.B. Scroll to almost the bottom of the webpage for a clickable link to page 2 of the post)

Mirror, Mirror (2)

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Mirror, or vintage iPad (thanks obni)
Mirror (Photo credit: christing-O-)

A comment left underneath the post I wrote about Standing Out Sitting Down said how insightful the post was, which has given me some confidence to attempt this prompt from the 14th August:

Think of your blog as a mirror: what does it reveal? Consider your blog name, theme choice, design, bio, posts… what does every element tell you about yourself?

The title, ‘sat n all that’ was actually thought of by someone else. One of the carers, actually who I don’t see now but they used to have loads of shifts with me. The blog started as a project to take my mind off things round the time I was struggling to adjust to changes in my circumstances, and to give me another purpose to my day. I find it a little easier to think of titles now, but found it impossible in the beginning. The title started off as ‘I may be sat, but I’m all that’, but I felt it wasn’t snappy enough, and wanted to write about more than just being sat in a chair, or only about disability issues. After all, my life is more than these things. My life is not nearly as varied as I would like; ‘special someone’ is no longer on the scene, I am unable to work, and I’ve even had to cut down on the blogging, to keep up with it. However, I have amazing friends, a great church family, and have more interests now, so do still have variety of people of things important to me to write about.

The design started as something else, though I can’t think what it was now. When choosing a theme, I wasn’t really bothered about the aesthetics. I wanted something clear and easy to read, so as wide a range of people could get access to it as possible. As ‘barrier-free’ as it could be without designing a site myself from scratch, as a few friends use screen reading software, and I wanted anyone who read it to be able to get access to it on whatever device they use to  surf the web. That says a lot about me, really. I’m an open, friendly person, and I find a lot of purpose in reaching out to others, in whatever small way. Plus, a lot of disability access is  an afterthought, and not from the outset, and I wanted to think about it from the beginning.

The theme is trickier. I like the idea of being a ‘niche’ blogger, and I guess I am in some ways as I write about disability, or faith, or more often, disability AND faith, together. Both are integral to my life, and intertwined in many ways. My faith in Jesus is central to helping me cope with my challenges, and my challenges deepen my faith. I didn’t want to write narrowly on just one theme, as I lacked the confidence to think I could come up with posts easily enough on just one theme… plus, as I say, I couldn’t really separate the two, so I am much happier with a ‘hybrid’ blog. I think, now the blog is a year old, and though there have been stretches of about a month at a time where I have written little, I am more comfortable with the themes I write about these days.

If you look at the ‘tag cloud’ to the right of a post, the topics I write about most are in bigger letter than subjects I write about less often. At this time, the topic in the largest lettering of all is ‘disability’. I am not entirely comfortable with that, as there are so many bloggers out there with a disability, people who have campaigned for years, advocated for others, been active in politics, and really know their stuff. I feel so intimidated by that because I worry so much that their writing on disability issues is so much more informed than mine, and what right have I to write about it so often when any of them can do a better job?

This is partly a complete lack of confidence, and a desire that if I bother to write at all I want to write informed, quality content; otherwise, what is the point? I guess it is partly about perspective too. It sounds idiotic to point this out, but obviously no two people who live with a disability will have the same views even, on their disability, so it stands to reason both will be able to offer different perspectives. I find it absolutely unbelievable that my most popular posts have been disability related.

The first post to which substantially more people read, and the first shared more widely, was one I wrote at the end of last year, about David Cameron’s speech at 2012’s Party Conference. Specifically, focussing on two little words he used: ‘Compassionate Conservatism. Now, a complete oxymoron…!! This particular post was also (he claims!) read by my MP, – WOW! My most popular post ever, I wrote very recently, about not being able to work, and trying to address the popular thought that if some severely disabled people can work, then why can’t every disabled person do likewise. To my amazement, this post was shared around upwards of 100 times, and has been viewed 400-500 times, at least! I’d never have thought my most popular post would be about these things, rather than something completely personal or something faith-related that I feel I know more about. I suppose I just am ‘myself’ when i write, as much as anyone can be, of course.

Another post read a lot is ‘The days that changed my increasingly complex life.‘ It was the first time I wrote about something really personal, and what I thought and felt about it too. The reaction to it really surprised me, as some people got a lot out of it. Those kind of posts seem to be the ones that really strike a chord with people; again, something that surprised me. It was reasonably natural, though tough, and painful, to write about, as I am very much a ‘heart-on-my-sleeve’ person. In some ways, the people who read this blog have shaped what I write about.

I used to answer more of the ‘daily prompts’ provided by WordPress, as i lacked the confidence, and often the inspiration, to come up with my own topics. This has got easier as time has gone on. Also, given the squeeze on welfare claimants that is about to get so much worse, the stereotypes peddled by the Government, and some sections of the media, and the ‘hot potato’ that is the Welfare State, the topics offer themselves at the moment, and it is also topics that are a big part of my life, whether I want them or not. No benefits, no money, therefore no independent life. As my Mum says, they didn’t bring me up to sit on the sofa for the rest of my life… so I really value the semblance of a life that I do have, and it gives me much more to write about than if I sat on the sofa the majority of the time!!

When I was 10…

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Dream
Dream (Photo credit: Xtream_i)

I don’t actually remember what I wanted to be when I was growing up. It took me until the age of nine to be walking unaided without any supports on my legs! At that point, I just had arch supports in my shoes, which I hated so much I refused to wear them. They did hurt my feet terribly tho!

If I remember back to playground games with my friends or ‘imaginary play’ indoors, from what I can remember most of it involved pretending to teach. I do remember filling in a long form in my final year at school which was sent of, my answers were analysed, and the careers advice they gave was that my personality and gifts were best suited to teaching. The careers adviser pointed me towards Stirling University, who at that time were the only Higher Education Institution offering the Bachelor of Education certificate alongside an ordinary arts degree. As I have blogged before, I did go on to do this course for three years. Despite giving it my all, I subsequently failed and was chucked off the course. The emotional fallout and impact on my life, and my dreams was devastating. If fact, it’s not too dramatic to say it was actually life-changing, one of five days to be so.

Fast forward about eight years, and my life has totally changed. Any childhood dreams are in tatters, as I am now unable work, and my life revolves around visits from carers, nurses, trips to hospital for appointments, home visits from specialists, and form filling. This blog, my family and friends, and my church family are the bright spots in an otherwise ‘ground hog day’ sort of existence. As  for my dreams, on good days, I still have those, though for the most part they are locked inside my heart. On bad days, I even struggle to blog or fail completely, sometimes for weeks, meaning I have to build up a following all over again. I refuse to let any of this beat me. My Jesus has promised me an ‘abundant life’, which I continue to pursue.

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!

 

With every breath…

jacksdavie7 Comments

Today’s daily prompt:

Who’s the most important person in your life — and how would your day-to-day existence be different without them?

I am wary of repeating what I have already written on this subject, as I have already written recently both about having no significant other (yet!) and how important my Gran is to me. Then, of course, there are the/my carers. Without them, there are some days I would see no one, and other days I would struggle to get out of bed. The other people I don’t think I have mentioned are my parents. There are other posts where I may not have mentioned them, but without them, I would not have achieved what I have. Their sacrificial, unconditional love would be the envy of many.

Were I to lose either or both I would miss them with every breath. I need them in a different way that other people need their parents. In some ways I still feel quite dependent on them, being single and disabled. This also means I do not feel as grown up as I might, with a significant birthday approaching. What I do manage, at the moment, is to live independently thus far. Time, my health and the actions of local and national government may yet change things. I don’t wish to talk to much more about my parents as I do not wish to embarrass them. However, they have done much for me and continue to do so. This includes te way both of them live out their faith and the example they are to me. As I’ve said, were I to lose either of them, I would miss them with every breath, every moment of every day.

Lost in the fog!

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My first thought this morning was about how much I desperately needed to go back to sleep. I wasn’t just a little bit tired either, I was bone-tired. My head sore and foggy, my eyes exhausted and refusing to work with me; every muscle tense. My mind wanders of it’s own  accord, worrying already. Dreading what the morning might bring. I’d just realised what day it was – Thursday,  so no regular carer.  Next thing I heard was a shrill  ‘buzzzzzz’. Slowly, clumsily I snatched at the reciever, mumbling ‘ hello’ as brightly as I could. An unfamiliar accent repeated my greeting. My head searched for a name to match. Eventually, the person appeared after shedding their outdoor things, and I relaxed a little when I saw who it was.

Things got off to a bumbling start. I continued to struggle to wake; blinking my eyes furiously, doing my best t issue instructions as to what was where and what needed doing. An hour and a half later, I was clean, and dressed, necessary medical things over for now too. I remember not feeling any let up in the exhaustion. If anything, it was worse. Double strength coffee,  white toast snd chocolate spread. I was interrupted mid-way through by another person; another medical procedure. My breakfast finished eventually, I was too exhausted to hear my phone beep. Eventually, woken by a call and the promise of a visit from two dear friends, I remember feeling heaps better after their visit. The rest of my morning passed insignificantly by. daytime telly with a story about a young lad with a rare condition, his constant companion a massive, but cute canine.

Eventually, the afternoon appeared, bringing with it a trip out in the sunshine with carer B. Yummy food, a walk, a nap. Only two hours left now. My head finally clearer, I’m off to work on something else, providing I don’t fall asleep first…