Tag: pain

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)

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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Five-minute Friday : Small

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I wrote the following for ‘Five Minute Friday’.

Right at this point in time, I feel small. Not small as in small child, but small as in not-very-tall, not very strong, and not very clear of mind. It is linked in with the previous entry I posted this morning. With missing someone buckets with whom there are memories… lots of fun, and laughter, private jokes and common interests. An adventure which had only got going and came to an abrupt end. For a long while only numbness, now, only pain.

Small people actually help me find my smile… little ones in the local supermarket who are gurning, until they see my chair, and watch, fascinated, trying to work out what is going on, or the little one in the chair in the street, leg stretched in front of her, her bright pink cast protecting her poorly leg, and a big smile on her face. These precious ones make me feel better, and wish I was small again, when I didn’t know grown up pain.

Exercise, but not as you know it…

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I’m aware I’ve done the absence – post – absence – post thing a few times now. I am sorry about it. It’s either been illness or just not having the energy or headspace to write. it had slipped down the priority list somewhat as i might have said before. As of yesterday though, I am determined to begin again.

I did truly want to begin (again) on Thursday, but I was simply exhausted. You see, I woke up achy and sore that morning, more than I had for the past few. I knew I simply had to go though, no backing out, just grit my teeth and get on. And so I arrived at my destination slightly later than expected, more tired than I wanted to be, helper in tow. I handed over the form, which thankfully, this time the doctor had signed the right place, but it was close!! I watched her check the form as i chatted to a physio, and introduced her to my helper. Form complete it was time for the tour. The pool looked lovely, shimmering with heat though. After a short search, one of the physios found us a free room to change in, and off I went. Tracking Hoist next, in my day of firsts. Once in the pool, a cushiony pillow behind my head, I lifted my body so the sling could be detached and the float attached. To my horror, I was being given ‘quite a bit of support’ from both physios. At that point my mind flitted to the past, the monotonous lengths and the medals. After a short time floating, I was helped to stand, supporting myself in the corner of the pool, one arm on each side. The exercises  continued at a acceptable pace, while my mind railed against the simplicity of the moves, things that were once manageable were now embarrassingly effortful. One by one, each one I could manage added to the draft of the ‘exercise plan’.

Eventually, the physio I knew best suggested I swim, so I began to float on my back. Well, I mean I hoped to float on my back, but began sinking fast in the middle, as I had when I last attempted to swim. One of the physios came alongside and explained that she would have to support me while they consulted between themselves how much support I needed. Very quickly, they decided on a ‘noodle’, which the supporting physio quickly added, while asking me to try again, while never leaving my side, and  helping me spin round before I hit steps, or the side of the sitting hoist. We finished with a few ‘warm down exercises’  before ‘chucking out time’. Each person or group of people is only allowed 20 minutes in the hydrotherapy pool due to the temperature/heat the pool must be. ‘Them’s the rules’ as it were. My attempt at using the chair hoist to exit the pool was rather more successful than anyone expected. Someone (I forget who) made the hoist the same height as the shower chair and I simply slid my bottom from one to the other – result!!

Once finally showered and dressed, we opted to visit the cafe before the taxi home. I chose A mug of tea and a ‘lighter breakfast later’ which my helper and even the physio said I had earned.(FYI: this consists of one sausage, a rasher of a bacon, a friend egg, a tomato, some mushrooms and a tomato in place of beans). I decided there and then to make it my main meal, as calorie wise it seemed the most sensible thing to do.

Once in the taxi, it was not long before sleep beckoned.’ Sliding out of the taxi, my helper told me I was ‘asleep on my feet’, Making an effort, I got to my door in my little chair without falling asleep. The helper made up some dioralyte and a coffee, and went on her way, which incidentally I didn’t drink. I slept sat up in my chair for three hours solid. After this I cooked and ate some pasta before falling asleep again, waking only to the sounds of the buzzer when the carers arrived Having slept so long I decided to say up for a bit. Predictably I fell asleep in my chair, waking when the phone rang. Call finished sometime later I crawled into bed and slept more or less solidly all night, waking exhaustedly.  So far so normal for someone who gets next to no exercise.

Though by now, I’ve had a days grace, I am still exhausted. I fell asleep as I wrote this. I am determined to finish this in good time and attack my to do list after lunch, so I get a good rest tonight and hopefully avoid falling asleep in church tomorrow!! I am already thinking about what to write and auto-publish for tomorrow, so watch this space!

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Hydrotherapy is a form of physio/physical therapy exercise done in a small pool, heated to a correct temperature. The heat is good for muscle pain/spasm/joint pain, and so on. The water aids bouncy allowing the likes of me to exercise in a way I couldn’t on land. It is the least restricting form of exercise and can make a big difference for some individuals. My exercise program includes side-stepping, walking, attempts at pelvic swivels to build some kind of ‘core’ from the natural resistance of the water.

A week of two halves

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Grapefruit; 2 halves
Grapefruit; 2 halves (Photo credit: Wikipedia)

A week of two halves, this was

Joy and Pain

Ecstasy and Agony

Mountains and Valleys

Letting out and keeping in

Talking for hours, and keeping quiet

Memories, and things I will never experience

Being there, and wishing I could be there

The seen and the unknown….

loving and praying despite it all, because of it all

Until Next Time

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This post is part of Five minute Friday. Please leave a comment on this post below to encourage me and then take part yourself. Simple!

The explanation for my absence….!!

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Dear lovely followers, (should I have any left?!) If you’re reading this now, thanks for sticking with me! As you might have noticed, I haven’t been writing much over the last week or two. There is more than one reason for this, but I can only go into a couple of those here. You might remember reading about my little accident a couple of weeks ago now. I thought then I hadn’t done any lasting damage, not even to my knee, but unfortunately, I have. How long it may last, I don’t know, but the healing process may take a while. Though I live in England and have the backup from the NHS, I’ve been having to fork out (pay up!) for physiotherapy, originally for chronic pain in my back. So bad, that had I not gone private, I would have had to start being hoisted, say, from my chair to my bed, within a few months to a year, because of the severity of the pain and the level of restriction the pain caused. Fortunately, it is making a difference, but because this meant I was already regularly seeing a very good physiotherapist, I knew that if between the physio and I we could work out what the problem with my knee was, she would give me as good advice as she could. I was getting to the stage with my knee where the pain in my knee would cause my leg to collapse underneath me. An absolute nightmare for anyone with any mobility problems, never mind how someone who has mobility as poor mine is. I am still attempting to transfer front on, with the help of my zimmerframe, rather than side on with a banana board as the strength, co-ordination, and control in my arms is far from adequate for this. For those of you who know about chronic pain and/or life altering physical disability, I am sure ou can well imagine how difficult tranferring had become. Aditionally, my leg collapsing would cause my knee to spasm, which would greatly increase the pain, which would mean putting even less weight on my leg than I could all ready…!! This meant I was willing to let the physio do whatever it took to work out why I was in pain and how to help it get better. What she did have to do may well may you wince, as she had to ‘create the pain’, i.e. get me to take two or three steps so she could see it collapse, and once I was sat. prod my leg to fine out where the pain was. Yes, it was a painful as it sounds!! It turns out, I have damaged a major nerve at the back of my knee, which wraps round the side of my knee. The whole thing is badly inflamed. Apparently the nerve at the back of the knee splits into two, there is the siatic nerve, and the other one, which I cannot remember the name of! Once this was diagnosed, my lovely physio-terrorist (sorry, therapist) was able to give me advice. Advice so good, it has already helped improve my knee by decreasing the number of times it collapses, reducing the resulting spasm and increased pain. Anyone with chronic pain, or severe disability or both, will tell you things often go in a vicious cycle especially with spasms or pain. Breaking that cycle can be heinously difficult, but once you do, it can make an enormous difference. P.S. For anyone who would like to read more about the causes and effects of pain, see Health Activist, Mrs. Rants excellent blog. ————————————————————————————————————————–

I wrote the majority of the above last Wednesday, but had no time to publish the post. I am finishing this in the early hours of Monday morning, a day and a bit after early 30th birthday celebrations. My lovely friend who organised the bash asked my Dad to say a few words. I admit to having moist eyes! I may write another post explaining a little of what my Dad said that night, but he also referred to my blogging skills when listing some of the things I am now filling my life with. Apparently, I am a “Master Blogger”!! I am well and truly back. For your amusement, I have included a photograph of me at my party, which the lovely Bryony took of me.

The photo shows me at my 30th Birthday party.
I am wearing a black sash which says “Birthday Princess”, and I have a large pink badge pinned to my jacket which says “I’m thirty, pour me another”, with a picture of a wine or cocktail glass on it! I have a big smile on my face. I didn’t realise until I saw this photo that I am sat underneath one of the ceiling lights, so it looks like I have a halo above my head!!

Dancing Queen

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At first, I had some difficulty thinking of a particular skill for today’s daily prompt. Then it hit me. I have always always I want to be able to dance. I remember school discos in embarrassment. Scottish country dancing practice in physical education was much worse as I was forced 2 dance with my 121 helpers when the whole thing was difficult enough. This was a reminder of just how uncoordinated I was. On top of that none of the boys would dance with me.
This didn’t change much as I got older. While I was at university I went to so many ceilidhs that to my surprise, I I began to learn steps. The encouragement of most of the boys was an added bonus. Each time I danced with on ofthem often they would slow their pace and tell me I was doing great. Meanwhile, the other girls would be spun around at breakneck speed, often hurtling to the floor, resulting in ‘Chinese burns on their arms.
Many years have passed and I have gradually forgotten the steps. Fortunately occasions when I need them are few and far between these days. I would still love to be able to dance properly. Several years ago I was at a conference where there was a teenage dance group. One of the girls was partially disabled as a consequence of physical abuse. However, she danced so fluently and with such skill that you soon forgot her disability and l was left awestruck. Her perfomace was the highlight of the day for many and left them in tears. How I longed to be able to dance like her.
This longing have never left me but surprisingly increased as the years have passed. I am comforted by the fact that one day Jesus will give me a new body. I will never feel any pain or age and will have no limitations. I cannot wait for that day when I will finally now what it feels like to be able to dance like that. I cannot wait. Of course Jesus gets the first dance!

The Art of Compassion

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The Art of Compassion This is the link to my very first article for Bible Reflections,oh the excitement! I have written the article from my experience of being there for others in need, what God is teaching me through it, and what the Bible has to say about how to love people who are hurting.. This […]

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The place of rest….

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Forced to rest

I have no idea what to write. How to explain my absence. Only a few days, and yet, I have missed writing, this place to empty my thoughts, to feel less overwhelmed. Even if I post about something else, it still helps me somehow be more still. For a time I have had a distraction, my attention is on something else, something other than pain, discomfort, lonliness. 

I have these times where I crash. All I can do is rest. And yet, somehow, that is all I need to do. Not eating, not face-booking… not texting (well, not nearly so much). I prayed in the silence. I could not tell you what I prayed, except for release from the pain, for someone to talk to, as though I had forgotten I have One I can always talk to. I did think of someone though, and when I awoke after texting them, somehow I found my peace.  I haven’t done much with today, and yet, I feel I needed this rest.

 

Strictly dancing? (series number…??)

I did watch the new series of ‘Strictly’. What did you think of the pairings? It;s like Len Goodman said, this year he did not need to ask who people were, for he recognised everyone. It’s hard to believe is that time of year, Autumn. Yet, there is a change in the air. Sunday so warm, so summery. Monday so fresh, so clear, so cold. I love the freshness of that kind of weather. It also gives me reason to wear my wool jacket-cardigan type things. So comfortable. Already some of the favourite things I have ever bought. No chance… for tomorrow (today!) it is to rain… hello reality of Autumn!! For now, am off to eat cracker-bread, the food of my student-dom and drink tea and sleep 🙂