Give someone a #BagOfLife

I just supported Give someone a #BagOfLife on @ThunderclapIt // @ColostomyAssoc As an Ileostomy bag wearer with a stoma for life and medical complications dispute bags and medical care I can’t imagine how awful using a tin can or bandages must be though reality for many.  Necessity not a luxury. Please, please join me in […]

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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!

All about my ‘bestie’!

I first met Laura in secondary school. I don’t know who first started talking to who. I’m going to ask her, because I am curious now! I remember our ‘regi’ class [form group] lined up at the classroom next to hers.

Even though we don’t often talk or text (though we are at the moment) I know we think of and pray for each other, and she’d be on the end of the phone if I needed her and vice-versa..

Whatever I write here will not do her justice, at all, but here are my three favourite qualities in Laura:

Her amazing loyalty is what I think of first… Though I was a Christian at this point, and a baptised one at that I could be quite nasty sometimes and stir things between people… cause trouble basically, though I have no idea why now, and wish I had befriended those I made trouble for instead. Anyway, Laura stood by me through all of that. I moved about 90 minutes drive away from the town I’d lived in when I met her, and Laura is the only one who is close now despite distance between us.

Laura is one of the kindest, most cheerful people I know. She works with disabled kids in a unit attached to our old school. Not the one where we met because that’s no longer there. The new build is called something different but some of the same staff were still there the last time we talked about school and Laura’s work. I have no doubt she is amazing at what she does, with her kind and caring attitude, and a smile on her face. I bet she makes the kids she works with feel good about themselves too. I remember Laura accompanying her brother to their local Church Youth Group, as he couldn’t go without someone with him. She helps her Mum out a lot and I remember her helping with the kids too. I am sure there are loads of other examples, as Laura is always ready and willing to help someone in need, but I don’t know about it because she doesn’t shout about it.

I don’t ever remember Laura not being cheerful and having a smile on her face. I don’t ever remember her feeling down either. She’ll cheer me up when I need it, often with a funny story about something one of the kids did, as her Mum is a child minder. Whatever life throws at her, she seems to just get on with it, which I really admire. I have no doubt there will have been times she’s cried, but I don’t know about them.

Guess I would if I know about those times if I lived nearer. I really wish I did. We don’t see each other often as there are hundreds of miles between us now, and neither of us can drive… yet! Laura is learning, and getting there by the sound of it. Will give her a lot more freedom, though it will be a long time before I ask her to drive to Leeds! I can’t travel on my own these days and it’s still not totally sorted out yet, but I asked (told) her to come down to Leeds with her sister this summer. Really looking forward to seeing them both and catching up. Creating mischief is more like it. More ankle bashing, Laura?!

 

“God made us best friends because our mums couldn’t handle us as sisters” (author unknown)

 

 

 

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.

 

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.

how would you answer these?

Yesterday’s daily prompt was as follows: On the interview show Inside the Actors’ Studio, host James Lipton asks each of his guests the same ten questions. What are your responses? What is your favorite word? onomatopoeia What is your least favorite word? twerking What turns you on creatively, spiritually or emotionally? anything that inspires me to write. Could be […]

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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!

(tell me why) I don’t like Mondays…

As it is Monday today, I have been acutely aware a blog post was due, having been asleep and unable to fuction for the majority of Saturday, and out for the majority of Sunday, I have had no chance to schedule a post ahead of time. Yesterday, I had to get the minibus to church with my little wheelchair as the big chair is awaiting a repair and was too unreliable to drive, and could have halted at any given minute. Having the little chair meant being able to go from home to minibus to church, to my friends car, and into their house, and vice versa later on. Hard work for me, but means I can still visit my friends houses occasionally, giving me a bit of a life, meaning I am not completely housebound. Of course, relying of this kind of assistance just to cross the threshold from my flat to the big bad outdoors means I am still housebound for the majority of the time. I did have a good day with my friends, who were not in the least bit bothered that I napped in my little chair for the best part of an hour between 5 and 6 pm. I am so thankful for that, as it meant I did not have to rush away as soon as I had eaten, but I could spend more time with them once I awoke. My friend’s daughter has learnt how to take my arm when i need to borrow her for a few steps, and also now knows how to fold my chair, I think this is fantastic because she has learned these things young, and can help others too. Useful in a church such as ours where the split between able-bodied and ill or disabled is a least 60-40, far higher than in society at large.

Fast forward a few hours, and I awoke exhausted from yesterdays exertion. I awoke when MainCarer pressed entry buzzer but fell asleep between letting him into my flat and him finishing sorting things in the other room. Bummer. I jumped awake when he came through, spazzing from head to toe. I struggled through strip wash and getting dressed, and managed most of my bacon sandwich, and my tablets. After a little rest, I think I dozed again, until I realised my stoma bag had split everywhere, barely an hour after main carer had left. I dithered, wondering briefly if I should attempt to change it before common sense prevailed. I decided the most sensible thing was to wait for the nurse or an assistant, whoever was due to do that morning’s treatment. Before long, I heard the entry buzzer being pressed again about 9am. Help had arrived, and by 9.30am, had left. Dressed in clean underwear and jogging bottoms, I slowly and painfully clicked my way through to the living room with my Zimmer frame to start my list of emails and calls, much like some of you would do this as part of your job.

It wasn’t long before I cried out to the Lord ot help and strengthen me, as I felt completely unable to function. Just at the right moment, I saw the following Spurgeon quote which ‘Flowing Faith’ posted on Facebook:

Let this one great, gracious, glorious fact lie in your spirit until it permeates all your thoughts and makes you rejoice even though you are without strength. Rejoice that the Lord Jesus has become your strength and your song – He has become your salvation.
~ Spurgeon

This became my morning’s heartfelt plea, and prayer. Two hours later, I am much more exhausted than before, with all 5 items on the list attempted, two voice mails left, one person having called back and another two still to do so, with two emails still to have answers to. I don’t feel as though the morning has been a success, as most of the list is still to be completed by others. My head is splitting and my heart heavy, and I feel slightly nauseous. I desperately need to sleep, but would likely sleep through and miss any calls, should they be returned while I nap.

In the middle of my business, and busy-ness, a friend text me to say they were on the way to a holiday in a sea-side town in the next region to the one in which I now live, with who else by my former ‘someone special’ as they felt I had a right to know. I cannot begin to describe my heartache, as we no longer speak; it being just too painful. They then proceeded to tell me they had wanted to visit while they were so near, but my ex refused. Expected but still very difficult to deal with, especially as ex had insisted next holiday would be abroad, and they could not come and see me, and were unlikely to be passing and see me that way… and then I find out they are visiting the next region. I hardly know how to feel, except I think this is adding to the nausea.

Doing my ‘jobs’ was only a partial distraction. The friend I who hosted me and others yesterday remarked recently said she understood why I consider my health to be job, partly because the phone calls and emails I do are also part of what she does at work, and partly because of how much time everything takes and the extra effort required due to my illness and disability. About 10.45 – 11 am, my temperature began to rise, and I started to sweat. I think this is from the effort of everything. Now I am sat, I have cooled a little, though I am still desperate to sleep.

The receptionist who answered my first call claimed to ‘understand’ that my chair is out of action, but was unable to process paperwork or make repair appointments any faster. This may well be the case, but please, please, do not claim to understand my situation. I am physically, mentally and emotionally spent and it is not yet lunchtime. I keep jolting awake every few minutes, and attempt to type a few more letters before I doze off again.

I have written this to try to help friends, family, and those who follow my posts to realise what life can be like for someone like me. Of course, the reality will be slightly different for each of us unable to work, but there will still be plenty similarities, like having very few spoons to begin with, the effort and time everything takes and the effort required to do it.

Small spoon
Small spoon (Photo credit: Wikipedia)

Main carer will arrive soon, meaning I can hopefully sleep while he does some jobs and waits for my phone to ring. I cannot wait!

Five minute Friday: Write

Writing
Writing (Photo credit: Wikipedia)

 

There are many times where I am too poorly to write, or so tired that I either cannot get my words out or I cannot sit up straight enough in my wheelchair to write without falling asleep. However, there are other times when the words pour out of me. If you are a regular reader to my blog you will know I am quite an emotional person at times. Today I am in pain. Physical pain from yesterday’s first hydrotherapy session, and heart pain, as the bloke formerly known as ‘special someone’ and I have had issues this week. Oh how messy can life get? However, their loss!
I am planning a weekend of writing to take my mind off him, and off the hurt; Three different posts for this coming week, a reflection on the Holy Spirit for the minister of a church I used to attend for the beginning of their series on the same, a guest post for Wendy Van Eyeck’s blog ‘ilovedevotionals.com‘, and yet I feel I am missing something. Pain provides great motivation for writing though – Is this one of the greatest paradoxes ever?

 

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To have a go at Five-Minute Friday, just click the link! Write for 5 minutes, non stop on the given subject, and you may just surprise yourself.

 

Today is brought to you by the letter ‘W’!

English: Waves breaking at Acapulco.
English: Waves breaking at Acapulco. (Photo credit: Wikipedia)

Today’s daily prompt couldn’t be simpler. At least it sounds that way! The reality may be different. Let’s see shall we? (Why not have a go yourself?)

Pick a letter, any letter. Now, write a story, poem, or post in which every line starts with that letter.

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Worry. Wearying, and wearisome.

Whispering in my ear, ‘what about this, what about that’

‘Why did they say this, why did they say that?’

When will I learn, to listen?

Waves roll, faster and faster as the storm within intensifies.

‘Where are you, Lord?’ I cry.

‘Where I always am, holding your hand’, I hear you say,

Whispering, Be still my child, be still and Know, I AM.