Five Minute Friday : Truth

These last few weeks especially, I’ve had to deal with an awful lot of truth: Companies you depend on let you down, equipment you rely on breaks irreparably too often for comfort, people you thought you could trust let you down, others you knew for a long time betray you or move on, illness takes its toll, so where once you could cope, you now feel you are hanging on by your fingertips. Migraines, pain, dehydration, fatigue; it all takes its toll, and suddenly you find yourself running… running to the only One who is big enough to take your burdens from you, and in time reshape and reuse them for good.

praying-hands-1427667-s
Photo Credit: http://www.sxc.hu/gallery/jamesclk

Fleeing to the One who is Truth has brought comfort and rest – ten straight hours of it in one 24 period. Books of morning prayers, a devotional on pain, daily devotional notes of various kinds and other Godly books have allowed Truth to seep into my soul, and to know the One who is Truth is helping me through days of illness, appointments and fatigue in ways I thought I could never do… Truth is, I know One who will never leave or forsake me, and who has not allowed me to drown in the water.

If you are struggling today, seek out the Truth, the only One who can help. The website www.lookingforGod.com is a good place to start.

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This post was written for Five Minute Friday. Do check out the ink and have a go yourself, I’d love to read it. Comment below with your link!

The one with the wedding (2)

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)

Introduction to the realities of illness and disability…

Blogging, but only just…

I’ve been wondering recently, how much of a readership I have left, given how sporadically I have been posting here. In an ideal world, I’d love to post every day, and started out with intentions to do so. Unfortunately, the realities of life barged their way in. I’m beginning to try to wrestle my life back, but it’s best to start from nowhere. If I don’t expect anything, I might just surprise myself! I’m sure everyone living with illness or disability, or both, in my case .will have a vastly different experience.  Let me try to explain why, and what some of this means for me.. This post also answered today’s daily prompt

The same name, different realities…

Certainly, both levels of illness and disability, or one or the other, can vary for some people from day to day, from week to week, and from person to person. Two people with the same’ disability or illness, and even something which manifests itself in similar ways, will still experience it differently. I know someone with cerebral palsy, who up until and including the time I knew them, by their own admission, had never experienced a day’s pain in their lives. I know people with cerebral palsy who have asked me what a spasm is. I also know people with cerebral palsy who can do far more than me before they hit the same level of tiredness, and who are not ‘ill’ beyond the standard colds and flu and whatever. However, I am thankful that I do not have some of the other traits of cerebral palsy, such as epilepsy, or a significant learning disability. The closest I come to a mild learning disability is that my level of spatial awareness is too poor for me to be able to read a map or to learn to drive. I live my life within a restricted geographical area and am happy within those boundaries. Cue panic if I even have to step outside those.

The medical part of the illness…

There are aspects of my disability I can ‘control’ by the way I manage it. Other things, however, have a life of their own, such as my ileostomy bag. I had a meeting yesterday to talk about the management f it, and it turns out I can only use one particular bag cause of requiring a ‘high output’ bag overnight… There are hundreds of styles of ileostomy bags and different pieces of kit, and it’s typical of me that my needs only half-suit one particular system. Those things are very definitely out with my control, and can become incredibly frustrating.

There are many other things out with my control such as what time I get up, and go to bed, how tired I am, how much pain I am in, the affect this may or may not have on my speech, my mood, and my quality of life. The more ‘needs’ you have, the more professionals, and agencies, and clinics you need to allow into your life to help you manage aspects of it. Often it is only about management, not cure. Each person often only sees their part of my care in isolation, so for example, there is a brand of painkiller than would help me manage the shortness of my gut, in a small way, but this has a horrendous affect on my fatigue, and does not manage my pain in the most effective way. There is a treatment I am having to manage other symptoms, but that again, is not a cure, and surgery not an option. Neither is surgery for a reversal of my ilestomy. So I have had to learn to accept these things.

There are some things I can accept, and indeed, even some tings I can ‘relax’ about. I am learning to ‘go with the flow’ even. For example, I am learning not to be a control freak over what food, and brands of food, is in the fridge, to mind the way the washing is put on the airer, or to mind the way my hair is dried. I am learning simply to feel relieved that I can often have these things done for me, thus saving energy I either don’t have, or energy I can use for other things. There is also of course, lots I am still learning, like finding things that can increase or decrease my levels of pain, however small those things are, such as ‘gentle’ (!) exercise at the gym, a nap, or full on sleep in the morning. I think for me, morning naps work better than afternoon ones! All of this said there is still much I wish I could do. Just getting through every day seems to take so much energy.

This was the week that…

So far this week, it’s been unusual in that I didn’t have a ‘sit’/PA-type time on Monday. Plenty of time for a blog post, and article, and a couple of other things? Wrong!

Carer C arrived in t flat right on time as usual, only to disappear just as quickly having been called away to another client who cannot get themselves out of bed. She helped me to sit up, and then left me in bed, with chronic back pain. Bless her, she returned as quickly as she could, did some of her duties and was about to get me washed when someone pressed the entry button on the intercom. Here was the nurse…! A few minutes later, the morning routine resumed. Having found something suspect about the stoma, I sat repeatedly calling my local surgery for an emergency doctor’s appointment, which, thankfully, I got. All of this done, there was the morning gone… indeed time slipped by until 2pm, by which time I’d had enough and phoned a friend. I did get a break in the afternoon as I went off to have afternoon tea with a friend. Now I thought, I could breathe a sigh of relief. My main key holder arrived later to help me put my newest medication in the U.F.O (noisy, spaceship shaped automatic medication dispenser connected to a call centre. Unfortunately, as my friend/key holder explained, the call centre is unhappy about how much medication I seem to miss. Cue upset from me, a long discussion, and trying to find yet more strategies to help me cope with another problem. Lovely of said key holder/friend to intervene though. Went to bed thoroughly exhausted, however, this was the kind of start to the week that impacts on the rest of it…

The rest of this week has just flown. Tuesday was a hospital appointment, plus a blood screening, and a sleep in my wheelchair in the afternoon, and evening. I knew Wednesday would be no different. Each of the first three days of this week have been ‘busy days for me. Almost more than I can cope with. Together, absolutely more than I can cope with. Just one of those days in a week can be enough for me! Wednesday was an early care call, after which I tried and failed to get some writing done before I went to my friend’s house for the fortnightly Women’s group. A quick lunch, and a meeting with a district nurse (DN) manager, the Community Stoma Nurse, my Joint Care Manager (the NHS version of a social worker), and  Carer C, with a lot of verbal input from me. If I was exhausted before, I had absolutely no energy now! A curry, a rest, and I trundled off to lead the prayer meeting, sounding surprisingly awake. However, all of this effort also involves what is called “Payback Fatigue”. I suffer a lot of this. The more I can pace my week, doing things at a slower, equal pace, and in an organised way, the better. However, this is something I am still learning to do, and is by no means the whole solution. By today then, I was floundering. I woke up with my stoma bag having burst, and went back to bed after Carer C helped me complete my morning routine. I woke only to see the nurse, and fell asleep again. Having woke up when Carer C arrived to do the sit/Pa time, we decided I had enough energy to go to the gym. Make no mistake, I am no fitness fanatic. I can manage a couple of machines, and a few specialist machines which help with gentle stretching of sore muscles. This was enough to send me off to sleep again. So frustrating. So much sleep, from so little activity!

So, what about the rest of the week?!

I wrote half this blog before sleep, and half afterwards. I fear that after reading this, I will have put most of my readership to sleep! I have written it to try to illustrate some of the frustrations and complications, as well as some of the lessons that come with living from long-term chronic illness and serious physical disability. I feel there is a lot of ignorance in general among the government, as well as the public as to the everyday realities of living with such things, to say nothing of the economic consequences. I hope to get some more constructive things accomplished in the next few days, but only time will tell…

The place of rest (2)

Beauty from Ashes

Some years ago, I met a wonderful lady called Jennifer Rees-Larcome. She is a renowed Christian speaker and has written many books. She also has a prayer ministry. She has many gifts, one of which is to see pictures in her head. There are differing views in the church of these kinds of things. However, I believe this lovely lady has a genuine gift of seeing God-given visions or pictures in her head. I met her at a women’s conference in the North East of Scotland. Obviously, there were many people who also wanted to meet her.

Jennifer’s Picture

By the time she was on her own, there was loud music playing for some reason. She asked me my name but could not hear me. Instead, she bent her head to pray. She told me something that has helped sustain me in my lowest times. The times I am ill, or feel most single. Her vision was a reminder of a wonderful truth., which I was reminded of yesterday.  This will sound incredibly random, as is typical of me, but I’d just finished watching Strictly, and was just starting a movie while reading the latest challenge from “The write project”. To write for 15 minutes, of absolutely anything that comes into my head.

Here was mine. As it turned out, my fifteen minutes was written about Jennifer’s picture long ago:

Dance dance dance dance out of the pain, out of the tiredness… dance it all away. With You by my side what is there I cannot face, cannot overcome in Your name. The picture Jennifer had years ago, still fresh in my mind. You and me, dancing, twirling, twirling, as though no-one was watching, (as the song goes…) me, beautiful, wearing the finest dress… covers all scars, bags and wheels. Indeed there is no need to think of any of that, for you do not see those. You only see me. Created, as I am, in your image.  You and me, nothing else matters.
I enter that place of rest, place of peace, which I have not found for some days. I see only what matters. All around me is vivid, how could I not see it before? The dewy grass, beauty all around me, the space, the air, the sun… One day, that will all me mine, as You have promised. For now, I see only glimpses. Then, I will see clearly, and none of what matters now will matter then.

The times, at my lowest, I remember this picture, from, when was it, at least 5, 7 years? Suddenly all of this disappears, for all I can feel is the pain. Back to remind me, that the picture in my head is not yet reality. For once the neighbours are silent. No shouting, searching, coughing, screaming. How is it, they are silent, and I am the one who cannot sleep. Doesn’t seem fair. No fair no fair, I want to scream it and shout it, be a child again, someone else take over all of this. So all I have is the place of rest. And yet, with You by my side… You promised, I could have that rest, that peace, so why is it is so fleeting?

Jesus, my Bridegroom

The Biblical Truth of course, is that Jesus is the bridegroom, and I am his bride.  Not because of me, but because He first loved me (1 John 4:19). Whenever I think of this picture, I am free, there is only me and Jesus. One day, as one of the verses in my favorite song “O Happy Day” (the Tim Hughes version!) goes:

When I stand in that place,

Free at last, meeting face to face

I am Yours, Jesus You are mine.

Endless joy, perfect peace

Earthly pain finally will cease.

These thoughts are so precious to me. I’ve had this post half written for a few days now, but have had to heed my own words, and continue to rest. There is so much emphasis placed on “rest” in Scripture. I would also highly recommend my friend @BexLewis article on ‘The Importance of Rest’ which she wrote for Bible Reflections some time ago. I’m off to get a cup of tea, and you guessed, it, some more rest!

The place of rest….

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 🙂

Anyone for coffee?

A time to rest…

This week has certainly been quieter. I can’t even remember what Monday was as it feels so long ago. Tuesday also passed quietly. I was unable to go horse-riding, as the main person who is teaching me was on holiday. It was good to rest as I knew the remainder of this week would be busy. I guess for once I’ve been fairly successful in pacing myself, as I am encouraged to do in order to reduce my levels of fatigue.

More trying times

Wednesday was another story however as I had to trek into town to collect my new glasses. Given what had happened last week, I was somewhat dreading it. However, I am relieved to say it passed without much incident. Unfortunately the same can’t be said for the rest of the day. I had my Electric Wheelchair with me which severely limited the the number of places I could meet a lovely friend for coffee. We ended up at one of the branches of a major chain. I’m fairly sure the disabled access for this building was added on later, rather than being purpose built which meant access was via the fire door. The staff had left this open, so far so good. We managed to find a table I could use, Jo found us, and we settled in for a good catch up. Two coffees later, I needed to make use of the facilities. I’d remembered from previous visits that these were upstairs but knew there was a lift. I’d forgotten how small said lift was though. If my chair was a millimetre longer I wouldn’t have fitted into it. I lifted my feet so as they didn’t scrape the side of the lift but fortunately there were no injures, and later I left the building unscathed. It brought back memories of a lift I used at Stirling Uni years ago which I and my friends christened ‘scary orange.’ It was a tiny, noisy platform lift which often broke down and we all hated it so much we mentioned it at disability access meetings. People were queuing up to say it wasn’t them who’d put the lift in, and no one would take responsibility for replacing it. I hope it’s not still in existence!

On Thursday, I needed a break to recover. Between Twitter and Facebook I asked people to vote on what I should do with my afternoon; bake a cake or head to the gym! The answer to unamimous, cake won! These days it is much easier to delegate and supervise… deciding when the mixture had been beaten enough, and when it was ready to go in the tin. I was rather impressed with the results! The contained I needed to store the cake in was miles above my head. I hadn’t remembered that till I was on my own. I tried climbing on a chair to retrieve it to no avail, much to my night carers disgust. She got the container with help from the mop handle and safely stored it away for Saturday.

Good Chaos!

Friday morning was rather chaotic, but definately good chaos. I have writing about the decking out of the flat here. Along with my friend Bryony, my friend Emma was also visiting with a young charge. As with the cake making, I whizzed about supervising another friend who was filling the UFO with medication, making sure everyone had drinks and London 2012 cakes! The morning was so much fun, the best in ages. It is so lovely to have those normal times with friends. It makes such a difference. Friday afternoon was back to normal with yet another appointment, however this one was fine. I have more changes to make to my ever expanding list of medication, but hopefully will have less pain at the end of the experiment.

Saturday morning, and a friend I haven’t seen in years arrived with her baby daughter for hours of chat, tea and cake, and more chaos. It’s always lovely when you can pick up where you left off as those we’d seen each other recently, rather than only keeping in touch over facebook, as we had done. I guess the jury is out as to whether online or offline friendships are the most beneficial. Have read, and written a couple of different posts, and am still thinking about it. Was great to see my friend and meet her lovely daughter. These visits make my week. If it wasn’t for loyal friends my social life would be so much more limited. I spent the rest of the day finishing my latest post for The Bible Bible Project. Not sure yet when it’ll be published.

 

Today has been one of those days when I found it difficult to be motivated, arriving late for church. I had managed a decent quiet time this morning, and am greatful that semons appear online later in the week. It helps make up for not concentrating this morning. Have spent the rest of the day catching up with coverage of the Olympics and writing. Is lovely to feel so peaceful and am hoping this will be a good start to the week. Definitely time for coffee tho…!