Transport woes part… (I’ve lost count)

Despite being back on track with my writing now, generally I have found it difficult to write this year, unless something particularly grabs me. This is one of those posts. (N.B. I wrote the remainder of this post roughly six weeks ago, but facing Hospital Transport tomorrow, this post is pertinent!).

Old worries revisited

I have many things in common with fellow disabled people regardless of disability type or severity. Difficulties finding, and keeping affordable transport are almost universal. I’ve barely been out of the house recently, either because of myriad problems with my electric wheelchair, difficulties with care or a health related problem.
This morning, however, I had an unavoidable blood test. I have to use transport to get there so I can have the finger-prick test much like a diabetic person would do to check their blood sugar levels rather than a regular blood test. I am often told children have bigger veins than I do.
This morning was different, because instead of the usual transport vehicle it was a taxi contracted to do the same journey on their behalf. Rude, impatient and uncommunicative and on their hands free phone for the majority of the journey, I was apprehensive about being dropped off at the conclusion of the journey. I should say as far as I can tell my wheelchair was tied down properly.

Unexpected Intervention

Not expecting any further help, I slowly pushed my wheelchair towards the dropped kerb. Unexpectedly, someone in the next car addressed the driver, asking if he was on NHS work all day or just the one job. He said ‘just her.’ The driver then said he should really help me get inside so the taxi driver motioned towards me as I inched toward the pavement. I swear my garden snails would beat me. The other driver swiftly said “it’s just we’ve been warned, you know…” Tada, my driver’s attitude transformed. He propelled the chair at speed towards the building and asked civilly where I would like to be, saying thanks as he did so. I think it was for keeping quiet in front of the person who reprimanded him. Job done, he left.
After my blood test, I plucked up the courage to complain. I wouldn’t usually, but I felt I had to this time because I wanted to make sure the same driver wasn’t taking me home. I was concerned others would be at risk if faced with this same driver too, in terms of their emotional well-being if nothing else, or more, if they didn’t get the necessary help either.
Imagine my relief when an ambulance technician I had seen before rocked up. I knew everything would be fine after that.

A timely reminder…

This morning reminded me of an important lesson though. God doesn’t always answer our prayers in the way we expect. I suspect you are wondering how transport and prayer are related? You see, this morning I was in such pain I was almost in tears. I’d prayed God would lessen the pain as I knew I had potholes and speed bumps to endure on my journey, and asked a couple of others to pray too. Being driven by taxi meant being driven straight there rather than all over my side of Leeds to collect others, ensuring a shorter, smoother journey, despite the unpleasantness. Thankfully, on the journey home I’m first to be dropped off. What a relief,  answered prayer, and an important lesson remembered.

An update on the problems, and the possibilities!

New Week, Old Problems

Morning everyone! In my last post, I mentioned some of the negatives that have been plaguing me recently, and some of the positives which counteract these. Specifically, the unreliability of both my health and my wheelchair continue to be constants which interrupt the life I would love to live. Last week, I took delivery of a small electric wheelchair, reconditioned and fitted to me. At first, all was well. Though not nearly as supportive as my aching body needs, it was at least working, and getting me round my flat, to the doctors surgery or church, and even a trip to my nearest city to meet up with  a close friend and her small boy. The peace, and freedom, has been all too short. Noisy wheels are back. I was assured that it was probably just the plastic from the wheelchair and the rubber tyres colliding in squeaks, but to contact those with a responsibility to fix it should it get worse. That’s what I will have to do later this morning, at the risk of sounding like a moaning minnie, as the wheels don’t actually feel very safe, besides being noisy. They are, at least still working for now, which is more than can be said for my previous chair. It has now been collected, thankfully, so there is one less set of wheels to negotiate round when I want to get from one room to another. Even this is an improvement on recent weeks, so it;s not all bad! Hoping the problems have a simpler solution, with it being a simpler wheelchair!

Accomplishments (at last!)

My health has continued to interrupt my writing because I have continued to need to hone my sleeping skills! I am however having more ideas for posts to write and being able to do a little more without falling asleep, so though it is slow, there is definitely progress! I’ve managed to complete a few small projects, including the first chapter of a memoir and the query letter, which I emailed off within the right side of the deadline with a few hours to spare (go me!) The hard work paid off when a friend I asked for feedback really liked it, despite a few errors. Thanks, Caroline for your input. If further chapters ever see the light of day, I’ll definitely be sending them your way! I read it to a carer as well while she cleaned, who also really liked it, even though they have completely opposite background and personality to me… I mention these things, because I see it as a really good sign that the same material has been received positively by completely different people. Just awaiting the feedback now, but there is a long wait of just under two months, so I’m trying to forget about it!

I needed quite a few days to recover from writing the chapter, including a few more than expected. I have no idea what is continuing to exhaust me, and don’t know where to start trying to find out. Despite this, I have managed to lead a meeting of a women’s group I am part of, where I talked about the last few months, and the ways I attempt to maintain joy and a prayer life, with a lot of enabling from my Heavenly Father. Just getting the talk written was last minute battle, as I couldn’t stop falling asleep in front of the laptop! However, I succeeded in the end, thanks to the faithful prayers of some close friends as well, a couple of whom were also at the meeting. It’s always encouraging for me to be able to use the things I have been through to encourage others, and explore ways we can find joy in our pain and reach others in the midst of it. I will post my talk soon once I have edited it. It’s still full of the typos I didn’t have time to edit before it was time for the group, but should be next Monday’s post!

I’ve continued to host WOWChurch services on a Sunday too. I think I’ve done three now, and despite posting the wrong link to the teaching slot, my confidence is growing. I chose to look at joy the first week, as it also tied in with trying to prepare for giving my testimony, Spiritual Gifts (on which a post is forthcoming!) and last night’s topic, prayer. In thinking about prayer, we also used what we learned to pray for Christians still in parts of Iraq, and the larger contingent forced to flee. I have seen some news articles focussing on the particular troubles for Iraqi Christians, but not many. If you would like to know more, see this recent feature from The Daily Telegraph. If you do the praying thing, please do pray for Christians in Iraq at this time. If you would like to know more about WOWChurch, you can find contact details for Dave Roberts, as well as short podcasts at www.davegroberts.podbean.com

What else does this week hold?

This week I have a meeting to try and reinstate funding for warm-water based physiotherapy, commonly known as hydrotherapy. I am SO looking forward to that beginning again, albeit with help from a different agency than the ones who accompanied me before. This week sees an ending too. I hope I’ll have my final appointment for anti-coagulant therapy to fix a blood clot I got in my leg in hospital from inactivity due to the seriousness of my surgery, It will be great to be free of such a major tablet, and have one less batch of appointments to think about. I am hoping though, that my transport is more successful than last time! A transport-related post should appear (as if by magic!) on Wednesday. I had thought I knew what I was posting on Friday, but I have forgotten what that is, so hoping I remember soon! I have a fairly boring but productive week ahead. This means unless I need to sleep it all off (which is likely) I should have more time to write! (Hurray!!)

In recent weeks, I….

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!

Writer in the making….

This is Part 2 of the Weekly Writing challenge from 24 March. The prompt went like this:

Every superhero has an ‘origin’ story of how they came into being. If applied to myself, How did I begin to be a reader, and eventually a writer? 


 

An embarrassing start

I th­­ink I was about seven or eight years old when I attempted to write my first story. It was simple and I tried my hardest to write something good. It was definitely a love story. I remember being quite pleased I’d written something from scratch, all by myself. I must have shown my Mum that I’d written it. My family was there one tea time or something, I think my Grandparents were there too. I remember Mum telling me to go and get my story, and how desperately I wanted to say no, because it was not good enough for people to hear. However, I reluctantly brought it.

I remember my mum saying, “this is the kind of stories she writes… and she proceeded to read it out loud. I distinctly remember wishing I could disappear, acutely embarrassed at what was happening, but worse was to come. Mum finished reading it, and everyone laughed, lots. I remember wishing I had hidden it away and not shown anyone.

I wish I had been able to forget it, work on my vocabulary and practice my writing more. The incident when I was 8 really sucked the confidence out of me. I’ve always allowed myself to dwell on embarrassments. I don’t remember writing stories after that. I did write occasionally when 10 or 11 in a diary with a gold padlock and a polar bear on the front. I only wrote stories in school though not always successfully, the rubbish I wrote when asked to write about a chocolate factory being one example! I did have more success with creative writing at secondary School and University, though I never wrote in my free time.

Nowadays, memoir is usually my favourite style of writing, as I love telling stories of memories I have, people I have met, and events I have been to, as well as a spiritual record of the ways God has used the difficult things, as well as the good things to mould me into the person he wants me to become

Lots of my experiences and everyday life in general differs from the norm because of my ‘being unable to work’, through being both ‘sick and disabled’. A fellow Chrons sufferer started writing and campaigning because she was desperate to have this description recognised. When I read that in a tweet I remember thinking — ‘I am so glad someone’s managed to lobby for that and been successful, as well as relief that I wasn’t alone.

Equally when I write posts and publish the material in my blog, if other people comment that I am I not alone in whatever I write about whether it be discrimination of some kind, difficulties coming to terms with health problems or whatever and share their own experiences, it reassure me I am writing about the right things, and I feel privileged others are sharing their experiences with me.

I’ve also written about news items, popular topics, or a longer comment on things I’ve read on other writers’ blogs. I didn’t think I would enjoy writing about current affairs as much as I do. I had a complex that I wasn’t knowledgeable enough, or enough of a campaigner to write on disability issues. However, some people have seemed to get a lot out of what I have written on the welfare state, especially people who previously did not know a lot about it. There are times I manage to engage others, and get a proper discussion going such as a post I wrote in response to a GP’s comments that the majority of disabled people could work if Stephen Hawking can! This went viral, receiving almost 400 views in one day and causing a lot of debate on social media, both in support, and in criticism of my arguments. (I have always loved debate, but was never confident enough to join the debating society at school, despite my Mum’s encouragement at the time).

My dreams slowly grew as I continued writing. At first, I was happy writing solely for the ‘Big Bible’ website. Then I started my Blog because a discriminatory experience buying glasses in Specsavers got me so fired up I had to write about it! As I wrote, I wanted to write more. Others liked my writing and began to read regularly, ‘liked’ my posts, and my confidence in my writing and in myself increased. This continued for at least a year, however, I found that I became unable to write consistently especially since my health has deteriorated. This has really hurt my confidence, because I very much wanted to write and I would often find that I couldn’t. Obviously the numbers who read have fallen dramatically.

For more than ten years, friends and family members have urged me to write my biography. Blogging has given me confidence to think about doing this because so many read and ‘followed my blog at one point. I started off writing a diary of hospital experiences because I wanted my story to from the ab differundance of other biographies out there. I still haven’t decided what to do because I feel totally torn. Is my story ‘different enough’ to write about on its own, and if so where would I start? And what about the thousands of words I have written so far? Writers, do you have any advice / Suggestions?! As for publishing, who knows, there is much too long a way to go before I need to think about that, surely?

I write for the same reasons I Blog. I wrote something this time last year called ‘Drum Roll Please’. I wrote the following about having a way to express myself. “[T]o 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.” Slightly clumsy phraseology, I admit, but does largely capture how I feel about writing.

God is using me, and my writing. Writing helps me to explain 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 am mostly confined to my house, but reaching others from my living room! About a year ago, I wrote the following:

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!

By searching and reading I am constantly learning, keeping up to date with some of the changes to policy, practice, disability laws, news, and current affairs. I have to discard the scare stories and keep only the useful information if that makes sense. I keep writing because I want to continue to reach out to others, especially those who live with constant health challenges, as I and many others do, and to encourage people, impaired or not, to learn to keep going when life gets extra hard, because giving up is not worth it in the long-term. I continue to need a way of using my God-given gifts, and of continuing to learn new things in a fast-paced world.

I heartily wish that when I was young, I had persevered, and learned the true discipline of getting up early, pouring a drink, and having time ‘quiet time’ to read my bible and pray, before writing for a few minutes, even. I’d like to write daily, and sometimes manage it for a few days at a time, but don’t keep it up as I then sleep through my alarm, or I can’t keep it up as my health gets in the way.

My favourite time to write is early in the morning, say beginning between five and five-thirty am if I can physically manage to wake up when the alarm goes off, and slide into my wheelchair. I sometimes use prompts such as this one from WordPress, 365 Days to Build a Better Blog (Rowse, 2011) or for girls and women Robin Norgren’s books, including Writer Girl (Norgren, 2013) . I had the privilege of chatting with the lovely Robin for a Skype jam session or two a while back. The ‘days’ aren’t meant to put the pressure on for you to write every day, but simply when you have the time, energy and head-space.

Please do let me know if reading my story of my own clumsy beginnings as a writer have encouraged you to have a go for yourself, be it with scrap paper and pencil, fountain pen and fancy paper, spoken memories on Dictaphone, iPod, or mp3 player to write later, or laptop / iPad and word processor.


To have a go at this challenge for yourself, click on the blue text (or tab to the word “challenge at the bottom of this post and press space if you have a screen reader).

Bibliography

Norgren, R., 2013. Writer Girl: 42 Days of Exercises to Deepen your Faith in Your Ability and Your Purpose for Writing. 1st ed. s.l.:s.n.

Rowse, D., 2011. 365 Days to Build a Better Blog. 2nd ed. s.l.:http://www.problogger.net.

 

fifteen on Friday: people who make ‘snap’ decisions

Fifteen on Friday is a space where I write about something related to my experience of disability and illness. It stems from ‘five-minute Friday when I followed prompts set by the originator of the site, and I do this with her blessing. It takes me fifteen minutes often, to type what others would type in five, usually just because I get so tired!

They don’t know me like I do…

This week, it’s a subject that really riles me, and so I will do my best not to rant. I should acknowledge as well, that I do this too, though I shouldn’t, given how annoyed I get when people do it to me. So what is it that so annoys me? I can’t stand people making ‘snap’ decisions based on a snippet of information, or on how I look, specifically snap decisions on the severity or lack thereof, of my disability, or that I ‘look’ healthy, so I am healthy, which just drives me mad. Someone else said recently that ‘I hide being ill very well!’ I think so too!

It would be a lot easier to say, ‘I know the truth, and it doesn’t matter what anyone else thinks’, but I’ve always cared. My friend known as ‘Chronic Rants’ blogged how it bugs her people always have to see the negatives in new treatments she tries, or tell her horror stories of how it went wrong for their friend’s friend, their mother, or who ever. Again, people making snap judgements based on a little information. Chronic Rants admits she does it, far too often. I do too. It still smarts when I am on the receiving end.

But you don’t look disabled!

If I am sat in a chair, or laid in a bed, I don’t ‘look’ disabled (nor would I want to). The irony is, neglect to take my cocktail of tablets and I look very disabled indeed, flailing about with arms and legs, shaking when I hold anything, doubled over in pain (which I often am even with the tablets). People see me looking ‘normal’ therefore and think ‘her disability is not that bad’ and voice it. I’ve even had a consultant pummel my arm years ago trying to find a vein, with me almost in tears ‘what’s wrong?’ he says.

‘My arm hurts a lot, cos I have cerebral palsy’

He says, incredulously, ‘You have cerebral palsy? Nobody told me (no surprise there!) But you don’t look like you have cerebral palsy’.

He’s not the only one. Nurses have made me walk because I don’t look disabled enough to need a hospital wheelchair, so I’d only have to walk the wee bit to the taxi) and others have asked ‘But how do you manage at home?’ Erm… that’s the point (of asking for help) I don’t. I have invisible disabilities, but I also have a physical disability that looks invisible in certain situations… weird!

However, they don’t see the exhaustion after a few steps, the physio does, or the pain shooting down my legs from trying to stay upright with a Zimmer frame after said steps. They don’t see all the things I can’t do that I have to ask ‘sidekicks’ to do, while wishing I didn’t have to ask so often. They don’t see me doubled over in pain, the professionals in and out of my flat, be they joint care manager, agency manager, nurses, ‘sidekicks’, other nurses for appointments, and house visits from doctors when I can’t even make it down a street or two to the surgery.

Yes, I know, I should put the violins away now!! I am thankful that I can talk (though others may not be when I just don’t shhhh!!), I have an electric wheelchair to get about (though it doesn’t fit in taxis — another story!) and I can move my arms and legs enough to do some things (eat, drink, choose lighter weight products in the supermarket, drive my wheelchair (badly…!) and so on.

It’s something I have to live with, but that will continue to bug me! I guess we all have pet hates like that!

Age, not just a number…

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

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.

Scope's Blog

It may be the last week before Christmas, but politicians are making time between mince pies and mulled wine to look at a couple of important disability issues.

Today MPs have their first opportunity to debate the Government’s plans for reforming local care – including capping care costs for elderly and an end the postcode lottery in care.

Councils say the crisis in social care sits behind big health issues such as pressure on A&E and GPs – if older and disabled people don’t get preventative, community care, they risk becoming isolated and slipping into crisis.

The Care and Support Alliance – representing 75 charities – is today saying that the bill is a real achievement but risks being undermined by a funding black hole which has forced councils to restrict who gets support.

The CSA has published new research from the LSE that reveals that if we had the…

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New Directions : Introducing ‘Fifteen on Friday’

‘Fifteen on Friday’

I am relieved to be writing again after a hiatus of some weeks. Several times, I have begun posts but been unable to finish them. Often on a Friday I would look up the ‘Five Minute Friday’ prompt, write that, and then share it with others who have written on the same thing. However, I have written here for well over a year now save a couple of longer absences for illness I was unable to work through. Owing to another of these absences, it’s some weeks since I had an immensely helpful Skype chat with writer and blogger Robin Norgren about the direction she thinks this blog should be heading in.

Together, we came up with a plan, We decided, that as the ‘Five minute Friday’ prompts took me fifteen minutes to write the same length of text as other writers wrote in five, we came up with Fifteen on Friday, focusing on some aspect of life with a disability, with Lisa-Jo Baker’s blessing (the creator of ‘five-minute Friday). My first subject is one of my favourite hobbies, and one of my favourite ways to exercise save for horse-riding. It is a mix of swimming and physiotherapy exercises, hence the name hydrotherapy.

A snapshot captured in words: hydrotherapy

The air is still, and close, humid in fact. Those on the side-lines slowly swelter, though those who have luxury of the warm soothing water delight in its caress. The only sounds are of chatter, between those on the side-lines or those in the water, and sometimes between the two. There is one, however, who is perfectly still other than when disturbed by others around her. Still, though by no means emotionless …

Slowly, sore tired muscles begin to relax in the warmth, as joints old before their time are unusually buoyant, helped of course by two cylinder-shaped multi-coloured floats (‘noodles’).  Breaths become deeper, slowly exhaling the stress of the week, and inhaling the still warm air. Joy begins to seep in, from one pore to the other until eventually, all else is forgotten but the gentle rhythm of the water, allowing the person in the middle to bob gentle up and down, unfurling piece by piece. Sometimes, the air is punctuated by laughter.

The bit in the middle is the hard work, kicking, stretching, moving stiff joints, until the last five minutes are free to relax the same way as in the first five, floating gently and calmly… the last final gasp of warmth and joy. All too soon it is over, with just 20 minutes time allowed. Off for all the hassle of changing and the banter of lunch in the café before heading home to chores, errands and the day to day things. Until next time…

Five-Minute Friday: Tree

This picture shows the tree I can see from my kitchen window. Though it has lost lots of leaves I can still see l lots of different shades of red and orange.
This picture shows the tree I can see from my kitchen window. Though it has lost lots of leaves I can still see l lots of different shades of red and orange.

As soon as I saw the word ‘tree’ I thought of two in particular. The first, the magnificent tree I can see from a window in my kitchen, resplendent in all the colours of autumn with just enough leaves left to show off. The other tree, the fig tree in Scripture, and of which I was reminded recently while reading Christina Schofield’s story, My Life and Lesser catastrophes, beginning with the motorcycle crash which shattered  Christina and Allen’s marriage, ministry and family as they had known it, and in its place, was trauma, uncertainty, hardship, and disability. One day, while Christina is reflecting on the caregiving challenge presented by her husband’s paralysis, God gently reminds her of the fig tree in Habakkuk 3: 17.

Though the fig tree does not bud

and there are no grapes on the vines,

though the olive crop fails

and the fields produce no food,

though there are no sheep in the pen

and no cattle in the stalls,

18 yet I will rejoice in the Lord,

I will be joyful in God my Savior (My Life and Lesser Catastrophes, kindle edn. P 317).

Each of us, if we are Christians, regardless if we face horrendous circumstances, or perhaps especially if we do, still have the same requirements on us as others, for example to choose to find joy in God and what he has done for us, to be thankful for the gifts he has given us and to find our strength in Him rather concentrating on the hardships we face and then trying to fight on our own. If we do, we are sure to lose.

I found I had much in common with Christina and her husband. For instance, it is easy to become bogged down in the monotony of day to day life, especially when faced with significant disability, as it takes so much energy just to get through each day, leaving little inclination or energy for travel, life does not vary much, as it revolves around routine by necessity, and there may not be much, if any money left over from benefits (or disability pension) for distractions and luxuries once the extra costs of being disabled are met in part or whole. We do though, have the constancy and companionship of Jesus, and the strength that only comes from Him, which is exactly what we do need. In our lack, we have plenty. I am thankful to God for such a vivid reminder of these things. I am off now, to see how many different colours I can find in the other tree, the one out the kitchen window. Until next week…

N.B. This post was written for Five Minute Friday. Why not have a go yourself? I’d love to read it!

 

Less Super Stylish, More Carefully Selected, and Comfortably Attired….

Daily Prompt from 4th October:

How important are clothes to you? Describe your style, if you have one, and tell us how appearance impacts how you feel about yourself.

Goodness, this is such a big question for me! In terms of personal style, other people, especially friends, often tell me they like what I’ve chosen to wear that day, or ask me where I buy my clothes. I’ve come to prefer buying most of my clothes from George at Asda because if I choose what I buy carefully, I can get really lovely things for a reasonably friendly price. There is a smallish local store near where I live, which saves a lot of energy I don’t have, and I can try things on at home. Clothes shopping can take me hours, by the time a carer and I get into Leeds, find things suitable for me, try things on, get transport home… Everything takes longer from a wheelchair, at least in my case, and all the effort I expend often ramps up my pain levels considerably (pun intended!) I’ve developed my own personal style over the last couple of years, which makes it easier to choose what to buy, but much harder to find things, as I have developed a list of criteria when buying clothes. If I do not stick to these, it just causes problems. It’s easy to see why when you see how long my list of criteria is!!

Tops: be it a t-shirt, cardigan, or sweater, they must be longer, otherwise they ride up my back when I sit in my wheelchair, which is unsightly for others, and uncomfortable for me. It also causes pain and discomfort in hands, fingers and arms if I have to attempt to sort something like that all day long. If a top is longer, it hopefully covers the waistband of whichever trousers I am wearing, which makes living with the bag more discreet, but also means I cannot tell as easily how full the ileostomy bag is. T-shirts must be baggier to fit well, given I am quite overweight at the moment, and because they look so much better than tighter things when I am sat. Tops with too much stretch can be a problems for this reason but sometimes if I buy them a size or two these can fit lovely and still look much more ladylike than something with no shape

Trousers: my criteria for trouser-buying and the reasons behind them could fill a separate post easily. Preferably, no buttons as I find them so difficult, and painful to use. I’ve had many an accident because I could not manage to work with the trousers in time to make the loo. Trousers with buttons mean there is a lot more pressure on the bag because of where it sits on my tummy, meaning it is so much more likely to burst. For this reason, I really need to find trousers with as much stretch as possible as this puts less pressure on the bag, and is much more comfortable for sitting for long periods of time in my wheelchair.

This means generally only one style of trouser is suitable for me – jogging bottoms. An anathema to style columns in women’s magazines’’’’, as they are oh so fashionable, ubiquitous, and associated with overweight people in general I certainly fall into this particular category. I try to find jogging bottoms with a smooth waistband, as these are less likely to make an impression in the tape surrounding the bag, which is actually very uncomfortable. I have to spend so much time in my wheelchair that weight has gathered around my middle, meaning it is very difficult to find trousers which fit at all. When I can find them, I love when jogging bottoms look smarter like ordinary black trousers for example, like I would wear on a Sunday or out for a meal with friends, or on a date.

If I can find trousers which meet my long list, they are usually just that very thing – too long! They do need to be slightly longer as they would look odd otherwise when I am sat in my chair, However too long and I fall over the trouser legs when going to the bathroom, not just inconvenient, but dangerous given my distinct lack of balance, or co-ordination! Leggings can also be a good option in terms of fit, not riding down, (a big problem because of my weight, and wheelchair using) and are even better if a looser fit and thicker material, which can make them a brilliant option for wearing to weddings or other special occasions with a smart top.

Jackets have to fit a lot of the same criteria as tops, funnily enough, though too long and I end up sat on them which pulls on the material making then very uncomfortable. I have to be careful they are not too tight around the shoulders either, as it can make my shoulders uncomfortable for driving and look unsightly if too tight. Depending on the style, it is very difficult to find jackets that fit because of my weight. Anything with long sleeved. Sleeves which are shorter or can be turned up are much less likely to get in my way when I am driving my wheelchair, much safer and easier to see what I am doing.

Dresses: I cannot ever remember owning a dress in my teens, other than a bridesmaid’s dress, as I disliked them immensely while I was still on my feet… I hated that other people could see my misshapen knees, and was SO self-conscious that other people could see the unconventional way I walked, however, since my last major operation five years ago, dresses have become something of a style savior for me. They need to be longer-line, and stretchy so as not to make my shape unsightly when sat down, and to fit over my stomach without overemphasizing my weight. They also tend to put much less pressure on my ileostomy bag – an absolute bonus. In recent months, thanks to a dear friend, I have discovered White Stuff, a great go to for my occasion wear, precisely because they sell a lot of their clothes in stretchier material, and their clothes tend to be a generous, feminine fit, and pretty to boot, even if on the pricey side, though the last time I bought from them I put birthday money and vouchers together to be able to buy it.

Shoes are another minefield, and have been since I can remember, as they often are for any of my friends with a physical disability. Again, as with trousers my criteria for buying shoes could fill a separate post. What I needed when on my feet is very different now I am in a wheelchair full time. My legs and feet are very swollen because of side-effects of medication and being sat all the time. I find it tough, if not impossible to take my own shoes off, so really need to wait for help to do this, or leaning over my stomach to get to my feet can make the bag on my stomach burst (nice!) I most often wear slipper socks, or Piedero boots with a velcro fastening, as these can often be all that fits.

I found this upsetting for a while, as I have always loved my shoes, and own many more pairs than I can wear, just because I don’t always have things on which need a smart outfit. Many of these shoes no longer fit. I have been known to make completely impractical decisions on occasion when buying shoes, just because I love them. The shoes I recently wore to a dear friend’s wedding were a striking royal blue colour with a suede effect and a small thin heel. My balance can be atrocious even in flat shoes, so I can well remember my Mum’s reaction when she saw with shoes I was planning to wear. This is a common problem for women with a mobility problem – the shoes we need to wear can be completely unsuitable for special occasions, though special occasion shoes can be completely unsuitable. This has caused more than one dilemma over the years!

Confidence enhancing clothes are a combination of all the above, making me feel more comfortable, and less aware of bag, and make it less likely the bag will burst. Then, this makes me relax much more, making me much more confident. Not always fashionable, but hopefully usually stylish. Recently, I went to dear friend’s wedding, and the next day, to the church my parents now attend in Lincolnshire. I chose what to wear very carefully indeed. Thankfully this paid off as there were no issues, making a successful weekend for me!