Author: jacksdavie

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

The one about the ‘Magic Moments’

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Hands up who remembers the song about ‘magic moments’, which graced a television advert or two some years ago? It might be a cultural reference which is UK specific. I have been thinking a lot about ‘moments’ recently from different things I have seen, and read. One is an e-book, another a blog post, and another, a campaign led by a daytime television programme here in the UK. Each has expressed a similar sentiment in different ways.

What is wrong with ‘take a moment’?

I think, judging by the success of the latter, this sentiment about seizing, or making the most of the moment, is having a ‘moment’ in the spotlight. I say this in part because our government has seen the bright lights of the’ popular vote’ and declared that for every ‘moment’ of their time This Morning show viewers give to someone in need (it if is then recorded on the show’s website) our government will donate £5 to ITV’s Text Santa campaign. They are asking for 50, 000 moments, which means a lot of donated money by the government, which sounds good in theory…This morning are doing this to celebrate their 25th Anniversary which asks views to select their favourite moment from their 25 years of the programme.

I am sorry that I sound such a cynic, but in my opinion the above is nothing but a gimmick. I get that the government’s donations to ITV’S Text Santa campaign will do some good, but instead of the Government donating this money to charity, I would rather they dedicate this money to supporting poor and vulnerable children and families in the long-term, and by safeguarding the services they rely on, rather than cutting or dispensing with the services they dependent on altogether. As ever, the Government is giving with one hand, and taking with the other, while those they are supposed to help suffer. So much for the ‘Big Society’ which ‘Dave’ (Cameron) was formerly so fond of.

The other major flaw I can find with This Morning’s ‘Take a Moment’ campaign is that by volunteering to help, the public is giving of their skills, time and talent temporarily rather than on a longer-term basis. This is ill-advised for a variety of reasons. If an older, ill, or disabled person needs help with a particular task, they are likely to need this more than just once. Therefore, to only help once smacks of tokenism. Additional benefits of offering help on a longer-term basis are, that vulnerable people are less isolated, vital in an age where families are fragmented from estrangement, geography or being time-poor. It also gives families surrogate grandparents, aunties, and uncles, while teaching children of the necessity of, and value in helping those in need, demonstrating kindness, compassion, and how to share what they have with others.

Why ‘moments’ matter…

Though I have expressed cynicism and found much to criticise ­­­­­­in the first part of this post I see much value in another aspect of the ‘moment’ – making the most of every single one of them. This is something I am coming to value as ever-more important, the more limited my energy seems to become. It has taken me multiple attempts to write this post as I keep falling asleep, or being unable to concentrate. In the times I can however, my Twitter friend Lou’s post on making the most of her time while she waited for her baby to be born really spoke to me.

I have a choice here. I can believe that as I am in a transition, I have nothing to offer until I become a mother or I can do all I can, as I can right now. I don’t want to miss out by rushing ahead. I don’t want to miss opportunities that I will not get to have again.

On my bad days, in pain and exhausted,  is easy for me to believe that I don’t have anything to offer, however this is not how my Heavenly Father sees me.  I too have opportunities that I should grab before they go. Other things I am reading at the moment are encouraging me to make the most of the little things, and to find adventure where I may not have seen it before. Normally, I try to do useful things in my support time, however, as a one-off, I went to see a movie with my main carer. Something I would not normally watch. We had junk food lunch, which I try not to eat normally, and popcorn, and settled down to watch the movie. ‘Rush’

Time
Time (Photo credit: Moyan_Brenn)

directed by Ron Howard, is about the rivalry between Niki Lauda and James Hunt during the Formula 1 season in 1976. I love human interest stories, which this was, and the sense of danger in the movie just made it more exciting. I definitely recommend it, if you haven’t already seen it! By trying to find the things I can do to vary my life a bit, I am trying to make the most of my time. I’ve been inspired to do this by the sense of adventure in Wendy Van Eyck’s e-book Life, Life, and More Life, which s­­­­he wrote after she and husband Xylon found out he had cancer. They made a conscious decision to make the most of whatever time they have:

The reality is that life doesn’t wait for me to be ready before good and bad things happen. In the midst of life happening around me, in hospitals and on holiday, I’ve realized I can embrace life. I can live fully, and I can live without regrets.

Again and Again I have found nuggets within Wendy’s writing which not only encourage and inspire me to live a Godly life in the midst of my own messy life, but also teach me about the faithfulness of the God I serve and his unfailing love for me. I urge you to check out Wendy’s blog, if you have not already done so (http://www.ilovedevotionals.com). I am trying to find other ways to make my restricted life an adventure. The next of those was hydrotherapy with Community Physio, tattooed and pink haired carer, risk assessor … basically a hoot from start to finish. The next several hours of ‘moments’ will be spent comatose continuing to recover from hydrotherapy yesterday! Night night!

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

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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.

————————————————————————————————

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.

A quick question…

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I don’t know whether you have noticed or not, but with  my last post or two I experimented with pagination, that is, splitting posts into pages, hopefully making more manageable chunks to read, and allowing you to click on page 2 when you are ready to read more. However, the link to click on is in a stupid place, and some readers missed it, so I wanted to ask how you found this new feature.  I would be grateful if you would click on your answer in the poll below.

Thanks lovely people!

The one with the wedding (2)

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

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

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

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

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

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

Who, or What am I?

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Yesterday’s daily prompt was as follows:

Write a story about yourself from the perspective of an object, thing, animal, or another person.

My first thoughts were, how great an idea it was, though slightly random. At the same time, I thought what on earth will I pick, and then I had my light-bulb moment.

An incandescent light bulb.

If my story is good enough, you will be able to guess from whose, or what perspective it is written.

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Book Review: The Apple Tree

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I first came across Linda’s work when she began reading my blog. I had gone looking to see who had liked a post I had written, and Linda was one of them. I was curious about the title of her blog, ‘Raising 5 kids with disabilities and remaining sane’, so I checked it out. Full of stories of the 4 kids she has adopted and the scrapes they get her into, her writing is warm, funny, and educational. When I discovered Linda had written a book, I could not wait to read it!

The Apple Tree: Raising 5 kids with disabilities and remaining sane, includes some of these scrapes, including her kids histories and her battle to get proper help, as well as what led her to adopt four children with such complex needs. However, as with Linda’s blog, although her story heads to some dramatic and dark places, it is warm and funny and engaging too. I very quickly found myself absorbed in Linda’s tales about the family’s travels, and later, awestruck at the achievements of Frances biological son, and rooting for the family to survive all they face and pull through with their family intact. It really is one you should read for yourself. I read the entire book during one sleepless night!! I am reluctant to give too much away. Go and read this wonderful book for yourself, and let me know what you think of it!

English: Apples on an apple-tree. Ukraine. Рус...
English: Apples on an apple-tree. (Photo credit: Wikipedia)

p.s. This is Invisible Illnesses Awareness Week. It is apt I am writing this post now, as many of Linda’s kids have invisible illnesses and disabilities which she also talks about. An extra reason to read this excellent book!

What about my future?

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Tuesday’s daily prompt was one of the easiest I’ve ever answered. It was as follows:

Write a six-word story about what you think the future holds for you, and then expand on it in a post:

Only God knows what future holds

I find this an enormous comfort. I don’t have to strive anymore, because God’s got it sorted. I have no idea what the future holds, but He does… and he know’s what’s best.

That’s the simple truth. If I were to have a childlike faith, as I should, I should accept this and live by it without wavering. However, I am not as faithful to my father God as he is to me…! This is something I am learning over time, as I make mistakes, or try to have things my way. Were I completely disability and illness free, maybe I would have a husband and children of my own by now… or maybe not! Only God knows things like that, or whether I will ever be stable enough, and have enough support to have a job, and a career, or a husband! I am learning to develop a heart of gratitude for the many, many things I do have, from food, running water, flushing toilet and a roof over my head, a little money in the bank and money in my purse. This makes me in the richest percentage of people in the world. I think sometimes the disability lobby forget these things, though who knows what will continue to unfold with the welfare ‘reforms’. Things may well be completely different in a couple of years… or maybe not. I guess this is part of the reason it is important to trust God for the future. However, it is just as important to trust Him in the present, as I am to live for God now.

My life now also has consequences for the future; my eternal future. On Monday, I published a post about Invisible Illness Awareness week, and the scripture I quoted as helping me through the tough times is also relevant here:

Since you have been raised to new life with Christ, set your sights on the realities of heaven, where Christ sits in the place of honor at God’s right hand. Think about the things of heaven, not the things of earth. For you died to this life, and your real life is hidden with Christ in God. 4 And when Christ, who is your life, is revealed to the whole world, you will share in all his glory. (Col. 3: 1-4)

Scriptures like this help me keep going through the tough times. I have to admit, I am not superhuman, there are days I struggle so much with physical, emotional or spiritual pain. I am finding things tough at the moment but it helps to know that this isn’t the end though. What I do now will have a bearing on then. Just recently, the last 6 months or so at least, I didn’t see things as clearly as I do now. When things are bad I try to think of others more disabled than me or who have a particular need and pray for them, or to read a devotional by Joni Earekson Tada or a Psalm from my bible. It may be a song, or a prayer on Christian radio. It’s what Tanya Marlow called ‘the truth that comes in sideways’. (I highly recommend her post, which you can read here) I’m off to find some of that now to help me get back to sleep. I got a few hours rest before midnight but have been awake for at least 3 hours now!

p.s. I can’t remember where I read or heard this, but someone once said life is like a tapestry. We see only the picture on the front, but behind the scenes, at the back of the tapestry is the One who holds all the threads and can see the to bigger picture. One day, I will see the bigger picture too, but for now, I have to live in the present.

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Invisible Illness Awareness Week 2013

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Hi guys! The last time I posted was the 2nd of this month, and today is now the 9th. Put it like that, it doesn’t sound so much of a gap. However, before and after that post, I have been feeling unwell. It was an odd combination of stomach cramp, which I already take medicine for,  and a bad cough that my GP gave me antibiotics for as a precaution, as the cough had lingered for weeks. Thankfully, the antibiotics have made a difference, and the stomach cramp has subsided. I am still very tired, and in a vicious cycle of lots of sleep to no sleep, (or very little) and then too much sleep again. I know from experience this will sort itself out to an extent, but I am usually shattered anyway. Much of what I go through, the carers see quite a bit of it, especially the main carer. My family knows a lot, but doesn’t generally see me day to day. Some close friends know a lot, others nothing.

The only One who knows everything, is of course, Almighty God. I was reminded of this very truth this week as I was reading Day Two of Stacy Williams 21 Days to Finding Purpose in Pain, which I won a copy of after explaining some of my experiences with chronic pain underneath a guest post on pain written by Stacy herself on my friend Wendy’s website, ilovedevotionals.com. One of the verses for that day was from Genesis 16:13:

“She gave this name to the Lord who spoke to her: ‘You are the God who sees me,’ for she said, ‘I have now seen the One who sees me.’” Genesis 16:13

I got such comfort from the thought that God sees me and knows absolutely everything I am going through. That same day I read a devotional from Joni Earekson Tada talking about how parts of the Bible, especially Leviticus concentrates on the details of how to honour God, live out their faith, and keep their homes, and food hygienic and safe as possible. All the littler things, and yet God was in it all, as he is in all the smaller details of my life too. He sees the pain; physical, emotional and spiritual. He sees the day to day struggles, and also the small triumphs. For all these things, I am extremely thankful.

It was thanks to reading ‘Chronic Rants’ post on Invisible Illness Week that I first knew about it. I read her excellent post on 30 things to know about her illness, and decided to answer them myself. Parts of my illness are physical obviously, such as Cerebral Palsy (CP) and I use an electric wheelchair to get around. If you would like to know more about CP, I wrote a post for America’s National CP Awareness Week earlier this year, which you can read here. So, Invisible Illness. Why do I feel so compelled to write about something so private? Well. if you don’t know, you can’t understand, and it makes it harder for you to be there for other who have hidden things wrong with their bodies too.

30 things about my invisible illness you may not know (to have a go, the link is here)

1. The illness I live with is: Chron’s Disease, bowel resection, and chronic nerve, muscle and joint pain from walking and being semi-active for years. Oh added to that, constant fatigue from medication, sleep problems and so on. I already had Cerebral Palsy, from birth.
2. I was diagnosed with it in the year: 2005, last major op was 2008, and pain has become chronic in the last few years, steadily increasing year on year
3. But I had symptoms since: 2002 (I was 19), though lived with first, most major bowel resection since I was a few months old.
4. The biggest adjustment I’ve had to make is: There are two actually; being a full time electric wheelchair user, and the consequences of that, and secondly having carers in my home two to three times a day to help me.
5. Most people assume: my Cerebral Palsy is my biggest problem.
6. The hardest part about mornings are: how long it can take to wake up. I feel so ill too, never feel rested, and often have a headache and am in pain, especially back pain.
7. My favorite medical TV show is: 24 hours in A and E.
8. A gadget I couldn’t live without is: not really a gadget, but couldn’t live without appliance on my stomach… and my wheelchair.
9. The hardest part about nights are: not sleeping, or waking up in the night in pain
10. Each day I take __ pills & vitamins. (No comments, please) about 10 morning, 4 or 5 both afternoon and teatime and about 8 at night, plus multi vitamin.

11. Regarding alternative treatments I: think sometimes they are useful. Massage can really help, as has acupuncture, though in the case of both treatments I need someone who knows what they are doing so as not to cos me further harm or pain.

12. If I had to choose between an invisible illness or visible I would choose: I already have both.
13. Regarding working and career: I desperately wish I had both. What career? My job is my health.
14. People would be surprised to know: I once crossed London on my own when I really, really wanted to visit a charity I care deeply about.
15. The hardest thing to accept about my new reality has been: how limited my life is.
16. Something I never thought I could do with my illness that I did was: see number 14.
17. The commercials about my illness: there are no commercials about them – but adverts for painkillers annoy me – if only it was that simple. I take at least 3 different pain killers and still live in chronic pain, constantly.
18. Something I really miss doing since I was diagnosed is: well, have always been ‘disabled’ but miss being able to walk around, however wonky that looked.
19. It was really hard to have to give up: walking
20. A new hobby I have taken up since my diagnosis is: card making, and baking.
21. If I could have one day of feeling normal again I would: Ooh, I’ve never had a ‘normal’ day. I would travel to see someone I still care deeply about.
22. My illness has taught me: to begin to learn how to ‘be still’.
23. Want to know a secret? One thing people say that gets under my skin is: “what do you do all day”.
24. But I love it when people: come sit with me
25. My favorite motto, scripture, quote that gets me through tough times is:

 Since you have been raised to new life with Christ, set your sights on the realities of heaven, where Christ sits in the place of honor at God’s right hand. Think about the things of heaven, not the things of earth. For you died to this life, and your real life is hidden with Christ in God. 4 And when Christ, who is your life, is revealed to the whole world, you will share in all his glory. (Col. 3: 1-4)

26. When someone is diagnosed I’d like to tell them: Life doesn’t end, especially if you ‘only’ have a bag, you can life a normal life, As far as living with pain and fatigue goes, you can still have a life, it’s just a different kind of life.

27. Something that has surprised me about living with an illness is: how priceless ‘good’ care is.
28. The nicest thing someone did for me when I wasn’t feeling well was: brought me dinner, cooked it, AND washed up!!
29. I’m involved with Invisible Illness Week because: that’s just it, illnesses are invisible and people need to be made aware how life altering an invisible illness can be. A lot of what I suffer, I suffer in silence, alone.
30. The fact that you read this list makes me feel: that you care.

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Choice

Aside jacksdavieLeave a comment

Apologies that there was no shiny new post awaiting your perusal this morning, or indeed last Wednesday or Friday… I have had a few very tired days, due to a sleepless night, and a measure of extra illness. Over the past few days several things have been bothering me, but there is one specific thing […]

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