More than just a garden (2)

Unbelievably, it’s 9 months since a Garden Party was held to mark the official opening of the new front garden in the grounds of the big old house I, and my housemates call ‘home’.  A monumental effort between local businesses, hundreds of volunteers, Beechwood Residents, and staff, it’s continued to be tended by all the […]

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Taking inventory: From the outside looking in

Winding the clock back to the end of December last year, when the New Year was so shiny and new it had yet to begin, I had a conversation with my therapist where I had a definite “light-bulb moment”. In need of motivation for the year ahead, I decided to write a list of up coming events and extras (mostly outings)  which would give me something concrete to look forward to, brightening my semi-life..

During the year, I’d attended several weeks of a pain-management program. We were taught how to set manageable goals, by making them S.M.A.R.T.:

  • Specific
  • Measurable
  • Attainable
  • Realistic
  • Time-bound

My “Looking Forward” list was an extension of this technique. I followed one last piece of advice from the psychologists, which was to make goals public to give help to be able to stick to them, injecting intentionality into the project.. That’s why I published it as a blog post. Friends and family heard of, or read of, my plans with enthusiasm, and encouraged me to do my utmost to accomplish as much as possible.

The original list from 27/10/15 was as follows:

“In 2016 I’m looking forward to….

  1. Becoming an Auntie for the first time
  2. A close relative’s big birthday
  3. Going to see Boyce Avenue (a band who first found fame on YouTube coverong
  4. Going to indie food fest
  5. Going to a theatre show (yet to decide on what, where and when)
  6. Going to the seaside I miss the sea
  7. Visiting Susan with Debs and a sidekick
  8. Listening to Daily Audio Bible Every Day
  9. Keeping a gratitude journal (find a regular time to do this every day. Maybe 6pm?)
  10. Keeping up with Pain Management Programme activities:
  • Review goals on a bi-weekly basis
  • Every Thursday at 11.30am read through PMP course material
  • Practice mindfulness at these times minimum
  • Review Activity Level – is it at as steady a level as possible day by day?
  1. Reading a book a month on a completely new topic I know nothing about.
  2. Going to a different church from mine every 6 months
  3. Streamlining my spending (not sure yet what this looks like
  4. Sending a small but appropriate gift and/or card to a friend going through a hard time, Aim to do this a few times this year.
the days that changed my life
month-per-view calendar

Six months on, my life is unrecognizable, partly from the move to a new area, no longer living independently and receiving 24/7 care. Some items on the list have had to be abandoned, (was unable to use passes for indie food fest,)as it is harder now to find carers to accompany me on outings, since the home can be short-staffed at times, and everyone is needed here. The home do their absolute best to allow some of the requests where at all possible. Going out is now mega-tough.

It wasn’t all good!

Items 8 and 9 required habit-forming to really impact my life, and sadly this just did not happen. At the end of last year and beginning of this one I had a period of illness where I was unable to leave my bed at all, due to a nasty bout of cellulitis in my good foot, which lasted 5-6 long weeks. The antibiotics alsocaused havoc in my body, lowering my immune system, and ensuring another infection soon followed. Once all of this had healed, I became more fatigued than I have been for years, losing the energy I had built up with extreme care over a number of weeks while attending the Pain Management Programme and building activity levels. I’d been feeling better, and that was all gone. Upset, my mood sank lower, and my comping mechanisms became more and more erratic. A care-planning meeting added to the upset at the time, as it seemed nothing was achieved at all that was much practical good. However, those who needed to realise just how hard things had got for me began to see just what I was facing, the first of several answered prayers in the first 3 months of the year. Some weeks later, I was given respite, and following that, funding to make it a permanent move. The swiftness of the answer meant that no one was prepared for it, and 10 minutes before leaving for the Boyce Avenue gig, I finally heard the answer I’d been seeking. Almost 3 months on, I’ve now settled in the home.

First Gig in Years and a meet n’ greet!

Fortunately, some items on the list were completed before the move, and some I’ve documented in this blog. I became an Auntie to baby Euan on 11th February this year. I made it to my Gran’s 80th Birthday meal at the end of May, and loved it despite all the effort. Going to the Boyce Avenue gig in mid-March was a guaragutan effort too. Organising a side-kick, taxis to and from the O2 Academy, and the all important tickets of course. To ensure I’d no problems with my ostomy while out, I just didn’t eat an evening meal, and drank as little as I could. I’d guessed, correctly as it turned out, that getting to the disabled toilet would be a palaver, and this was the only way to avoid those stresses. My strategy worked until I got home, which was a relief. I didn’t want to miss any of the gig and was fortunate enough to briefly meet handsome Calum Scott, from Britain’s Got Talent (2015), the support act to the UK-leg of Boyce Avenue’s tour. If you are wondering who the heck they are, check out the You-Tube links to their music.

Despite all the upheaval in my life, I’ve managed to continue thinking about what I learned from the Pain Management Programme, and attend two further sessions, but missing two due to illness. I’ve pulled out of the programme now due to the difficulty of travelling two or from Leeds, and of finding a side-kick. However, at an appointment this week, I’ve been given a reading list, and will be sent programme material in the post at the times the group meet with each other. Very happy with those arrangements, to allow me to continue learning and accomplishing my goals. One, was to gradually begin writing and publishing blog posts again, another to continue with gentle exercises and stretches I was given while attending the course, and the other goal to go out with visitors rather than staying in. Due to my change in circumstances, the third goal is not so achievable. I know I am doing as much as I possibly can and am learning to be content with that.

I’ve surprised myself with how much I HAVE done, and I’ve gained new memories, made new friends, re-acquainted with old ones, and built on aspects of myself I knew needed more work. I have more confidence from pushing myself despite often feeling lousy. Doing more has pushed me to want to do more, despite reduced energy levels these days. The days in-between activity days have become recovery days rather than rest days. Having a ‘rest’ just is not enough. I’ve needed more and more sleep after outings, and even in the days before hand. I now read veraciously, and more widely than before, from Women’s fiction, poetry, books on how to write poetry, fiction or memoir, a book of Spurgeons sermons on prayer, which I’ve not long begun, and many more, even some YA books. I colour in, am back listening to music, and nudging my friends if it’s been a little long between contact.

I’ve yet to go to the theatre, but have recently been to the cinema, and have plans to go again to see the much talked about movie version of ‘Ab Fab’. Hopefully I’ll get to see the seaside over the summer, possibly visit my friend Susan who doesn’t live all that far away.  Of course, I have yet to have the operation I’ve been waiting for.I’m looking forwsrd to getting rid of my heavy hernia! I am sure there are other things I can add to the list. If you have any suggestion, feel free to post a comment below.

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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(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!