(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!

more space please!!

Dear Followers,

Once again, thanks for not giving up on me! This past week (or is it a week and a bit) I only seem to have had the energy for one thing each day, and therefore no energy left to write, which I have hated. Last monday it was physio/physical therapy, and horse-riding on the Tuesday. Try as I might, I did not have the energy to type as I slept after each of these activities and through the night, albeit in a disturbed, interrupted way. There was little respite on Wednesday, as I went to the fortnightly women’s group which belongs the church I go to. I really had to force myself to go, so little energy meant even less inclination to be in a crowd of even 8 women, lovely though the are, and even though we were studying  the word. Force myself I did, and by the end I was glad. Straight home to make dinner, before writing a shopping list, and having a think about a meeting I had later that afternoon. As soon as that afternoon’s sitter (befriender/carer) arrived it was off to the supermarket and pharmacy. No sooner were we back, I was straight into a meeting with my social worker and someone from my care agency to begin talking about support I may need for holidays or travelling to (other people’s) weddings. As some of you may know, these things are never simple and always last longer than anticipated. If I had any energy before, I had none after that. For once, I had put some thought in and realised I would never make the church AGM that evening, so had emailed my votes to one of the elders. Just as well, for I collapsed in a heap for a while. Thursday, Friday and Saturday were time to rest, as I had no choice. However, they passed in a blur as I was too restless. Too tired to do anything, and too tired to rest properly, causing me to feel guilty at my lack of meaningful activity.Fortunately, I did make it to church on the Sunday morning, despite falling asleep twice after the carer left, and again during the service. Perhaps it is unwise to admit to that!!

Things have not got any easier with the start of a new week. Monday morning brought a hospital appointment I had waited for, and dreaded, for the best part of three months. I am still collecting new specialists occasionally, including on Monday so that added extra stress. I was sensible enough to have requested carer/caregiver assistance for the appointment  Just as well, as from the point of waking up on Monday morning, the headache grew and grew to a full-on migraine. It wasn’t all bad. The person who had been asked to support me is lovely and helped me find the humour in the situation. Having not seen them for a while, there was lots to catch up on too. Mercifully for the times we needed to queue, waiting times were ‘normal’ for these things, so though there was a  wait each time it was not more than thirty minutes. I was so thankful for support as without it I would have cancelled my appointment and crawled into bed. Admittedly  I fell asleep in my wheelchair for hours after the appointment  but not before my carer took me for a step free walk (they walked, I wheeled) somewhere further away than my most local supermarket, as it does not have the facility to pay bills. ‘Only’ for the purpose of buying a very few groceries and buying gas and electricity, but the fresh air did me good, despite it doing nothing for the migraine. Given the level of my difficulty find my way around anywhere other than the tiny areas I can navigate comfortably, due to the number of times I go to those places, it is rare I venture anywhere else, seeing as I wouldn’t know where I was, were I was going, or once back, be able to retain any of this information for future use.

Monday done, the night was not much help as it was especially disturbed. I would normally attempt to go horseriding on a Tuesday, as I had done last week, but unfortuntely there were not enough staff available to assist me. One of those things, though a shame as it was a beautiful day. I still did not accomplish anything meaningful yesterday in terms of tackling the growing to do list, as I fell asleep for several hours after lunch. In between times, any time I thought about moving and trying to do something, I would fall asleep almost instantly. This happens often for several reasons.. Partly the medication I take, partly because having cerebral palsy means it takes me much more energy just to do the basic things others take for granted, and partly because I am always in chronic pain. It is hard to describe just how wearing all of that can be, unless you know this kind of tiredness for yourself. One way of thinking about it is in terms of spoons. Each day, with its varying levels or energy, or even hours or minutes can be thought of as a spoon, or spoons. Each day only has a certain, varying number of spoons. Once I have used them, there are no more, and nothing can be done about it, causing me collapse in my chair. In these times I may not sleep, but instead, as mentioned above, be extremely restless, to tired to do anything, but too tired to sleep.

It is in these times that my eyes drift to the wall of whichever room I am in. I never used to display photographs as I am not much of a photographer  The most i ever displayed were posters, either ones I had been given or occasionally ones I had bought myself. As I have gotten older, this hasn’t really changed, as most of what now adorns the walls of my flat were gifts from close friends or family. Only two of the items have been chosen by me, a picture in the living room and a painting in my bedroom.

Taking inventory of these things, if I look immediately up from where my laptop sits, I see two photo frames, one containing a family photograph of myself.  my parents, brother and lovely sister in law at their wedding last summer, and the other, taken at the same place, contains two photographs; one of my Grandmother and I, and the other of my grandparents. I often look at these photos during my sleepy times. It is more than just looking at the pictures. As photographs often do for anyone, they remind me of a special occasion, a happy day, and is a chance to replay the memories in my head. For me, they are also a reminder of a rare day when I felt as well as I can, and achieved a lot, managing to stay for the whole day, meeting my brother and sister in laws many friends, and catching up with family. A reminder, that having managed it then, hopefully I could manage something like that again, given prior rest and meticulous planning, including pacing of each and every hour, as I did then.

I look to the left of those pictures, and I see a print I bought from a local department store the weekend I moved into my flat. It is a pretty picture of a mustard yellow flower with a red centre and browny-green background, bought to tie in with the other colours in the front room/sitting room , Behind me next to the living room door is a plaque my dad found in China, which displays part of the text from 1 Corinthians 13, a famous passage which describes the best, purest kind of love, and is often read at weddings. It also includes the chinese (mandarin?) character for ‘love’ which one of the carers one explained to me in depth. Interesting at the but unfortunately cannot remember what he said, at all. I often find this; that my persistent tiredness prevents me from taking new information in and remembering it fully, if at all, sometimes.

Next, to the hallway. There are several things displayed here. First, is a small mirror which a dear friend bought me from a posh shop as a house-warming present when I moved into this flat, Moving right, next is another flower print, also yellow and gifted from the same friend, which she bought to tie- in with the shade of yellow we painted the hallway. At this point my memory fails me. I’m off to check out what else is on the walls!! As it happens, I was right. The only other thing displayed in the hallway is pinned up next to the bathroom – a calendar of photographs of various Scottish landscapes which was a gift from my friend’s mother; a thank you present for ‘putting up’ her son and his friend. Translation, should you need it: for having them stay with me!

Finally, to what is displayed on the walls in my bedroom. The first thing most people notice when they walk in was a gift from my dear grandmother; a framed picture of my ‘Sunday-name’, Jacqueline, written in calligraphy, which she bought during a holiday to somewhere in Canada some years ago. Previously, I had nowhere to display it, so it lived in a cupboard at my parents house for some years, but when they moved house a year ago, the picture came to live with me.

Moving clockwise round my room, next is a pinboard, on which I display reminders to myself of what. and who to pray for, which i use at various times of the day or night, having read of someone who made something similar as, unlike me they were completely confined to bed, but from that prayer-board could reach all corners of the globe by praying for missionary workers and projects oversees, and other friends who had requested prayer for themselves or people they knew.; I read it inspired to begin my own and it has helped focus my mind on a number of occasions now. Here again, I have to go off and check what I missed out.

Moving clockwise around my room, next is the newest addition to the space, a recent birthday present from a very dear friend, and her soon-to-be-husband; a silhouette of a horse. I loved this as soon as I saw it, partly as it was such a thoughtful gift. A small yet significant reminder of one of my passions, and brings a smile to my face every time I see it as it reminds me either of my friend or of the pleasure I get from seeing the horses, and from horse-riding. When I went into my room, I saw the final item, a framed painting I had completely forgotten about, which I bought at a open day at a local social enterprise. The painting itself is special, of daffodils of a similar hue to the colour of the paint in my room, in a red vase on a purple background. I bought it partly for that, and partly for how bright and cheery it is. I smile every time I  see or think of it, either because of the painting itself or because it reminds me of the young woman who painted it; a friend who is a beneficiary of the social enterprise project. I loved the painting as soon as I saw it in the art room, and treasure it. Much like my ‘prayerboard’, when I see the painting it reminds me to pray, this time for the young woman herself or more broadly for the social enterprise which supports her and many other friends.

I suddenly realised while i was writing about the painting I have forgotten two further pieces displayed in my sitting room. One, a photograph in the far corner of the room, of me sitting on the horse I love, me sat bolt upright wearing a hat which obscures my face but protects my head, and the horse, patient as ever, standing to attention  ears pointing skywards  just as he has done hundreds of times before, being an ex-police horse who loves the camera and knows exactly what do when a camera is pointed in his direction, a true professional!

The final item in my sitting room is also a picture of a horse. This time it is a caricature drawn by a friend, of an imaginary horse, (apparently modelled on the horse from the disney film ‘Tangled’!!). The horse is sitting in an electric wheelchair of all things, a expression of pure terror on its face. It makes me giggle every time I see it, and is a point of conversation for a lot of people when they first come into my house, and often, actually, an ice-breaker, if I have not met the person before. I guess by now, you are wondering about the story behind the picture. I asked my friend to draw it after an incident when I let a horse get too close to my wheelchair, and it bit a button out of the control panel! My fault entirely. A friend later remarked it would be just like this particular horse to steal my chair and joyride round the farm!! This caught my imagination and so I commissioned my friend to draw it for me, not being at all gifted in it myself!

Being blessed with lovely friends, I have one or two other pictures I have no room to display. One is new, and the other has been taken down to make room for something else. The other is a recent birthday present of three prints, designed to be displayed together. They are very pretty and make me smile, but I will have to move pictures around to make room for them.

I am not aiming for any particular mood; or even any particular look, but I love how each of the items on each wall has a story behind it; either the very first things I chose for my first flat, or a memory of happy times, or a gift from a dear friend. The memories are precious enough to help me keep going in the tough times; but also each time I see each item I remember who gave me the gift, and how blessed I am to have them in my life. I don’t generally have photographs sitting around, as I would tend to send them flying with a stray arm or if I knock into them with my wheelchair, which is often! Having recently had a party for a big birthday, I do have some photos I might display in frames around the place, though I will put them well out of harm’s way!