Some of us really wanna
serve, teach, help with outreach.
All our energies go on survival.
I don't know what to do.
Do I go?
Asleep almost on arrival,
serve or swerve,
survive or thrive?
Unbidden memories scatter,
shatter, all over my battered heart.
Church, it hurts.
Words flow around me as I snore,
Realising my mistake,
Up I wake,
What did I miss?
I wish it wasn't so hard
Concentration so fleetingly
there, but not. Fatigue, ever present,
I would weep, but
Time I have not.
Sweeping round the bairns,
In the direction of caffeine
and sugar, in fright i halt.
Millimeters from disaster.
I kid you not, a child lay in front of me
Same shade of gray clothing as
the carpet on which i roll, crisis only narrowly averted.
Need that sugar now.
Scalding coffee gulped,
Round I spin, in the opposite direction
I travelled mere minutes ago.
On i roll, apologetically excusing
my existance, as I roll onwards
Watching in despair at the forming queue.
Please, can i go first?
I must get this taxi.
Not happy. No time
with my friends but just one driver
For all the wobbly people, depending on motors, wheels, crutches, and a kindly face, needing space and a friendly word
Reassurance that home is near,
for fear of lateness,
and being labelled a nuissance.
Necessary compromise, so we can keep the
One way I get from A to B quickly.
Home. Eat or sleep,
weep or seek
Relief that all all that effort is done,
For One. MORE.WEEK.
Last week the clocks went forward an hour allowing for lighter days. Spring has also begun to well, ‘spring up’ after an unseasonably mild winter. It was with great excitement that this was also the week, my new quad sticks finally arrived from Florida. However, the most important event for me last weekend was the arrival of my dear Gran. (My last post featuring Gran was after her last big birthday, almost a year ago.)
I see Gran roughly once a year. This time my uncle and aunt drove south with Gran, to Manchester. A journey of almost 4 hours, without stops. I was so ‘chuffed’ (read: overjoyed) to see her. Unfortunately, I had to wait until the afternoon of Saturday to see them, despite knowing my Gran had arrived in Manchester the previous night. This was to allow me maximum time to get up and to rest before their visit, the first day of two, an added bonus.
My Aunt explained to me that the extra day was to allow for me having a bad day, or even a ‘bed day’ where I would need to curtail their visit to preserve energy for the following day. Plus… I got to spend more time with Gran. Their thoughtfulness delighted me, but didn’t surprise me, knowing how thoughtful my Gran is, especially.
We were having a laugh and a joke about how my Auntie is always in ‘physio mode’, checking I was managing with my new sticks, even though she was hundreds of miles from work! I was putting in a supreme effort that day, as I was desperate to walk well for Gran. I’m thankful to God that he kept me well, and smiley to enjoy those two days, enough that my ‘spark’ was back.
My limited energy was also boosted by masses of excitement over the visit(s), ensuring adrenaline booted my flagging energy. ‘Pacing’ (when activities are broken up into parts according to available energy) is always important. My relatives did this for me, checking at every half/hour that I was okay with them staying longer, and meant I could simply enjoy the visit. Gran did too!
My Gran, Uncle and Aunt all got safely back up to Scotland on the Monday too. I felt pretty rough the beginning of this week! It did take me a few days to recover, but sometimes, the rewards far out weigh the costs!
Until Till next time…
I’ve found this post so difficult to start. I have tried several times in the last day or two, but not managed to concentrate long enough. The words have jarred so in my head, that I’ve ended up deleting them and going outside for fresh air. Still, my mind refuses to quit jumping from topic to topic, thought to thought. I’ve cut, copied and pasted so many times trying to make the words fit despite the chaos in my head!
I’ve always been a worrier since I was very small. Outings have always been hard since a young age because of the need to be near a toilet. Growing up, I still went camping with The Brownies, and The Girl Guides, even though the latter meant sleeping in tents… and dashing to toilets. I’ve been on numerous picnics with my family or while on a Scripture Union holiday. I always worried about accidents, and developed something of a fear of public loos.
There were other worries too. Since I was very small, I become easily disorientated, sometimes even in familiar places, getting lost as easily as a young child might do, and have been known to panic in crowds. Having the spatial awareness of a 10 yr old is the reason why I’m not allowed to drive, but somehow, still allowed to be in charge of an electric wheelchair! I don’t know how I managed to move away to university twice, given these sorts of problems, but now many years have passed since my move to the wrong side of the Scotland/England border, I’m very glad my parents gently encouraged me to accomplish as much as possible. I was no different from my brother in this respect, having both left home at a similar age. However even if going out while at uni or when I lived in my flat was as ‘simple’ as going out for a meal with friends, out to a friends house or out shopping with friends, I’d be so anxious beforehand so as not to sleep much the night before.
As time has gone on, and my health issues have become more complex, going out have become much more of a thought, and required more planning than ever. Even weeks or days before an outing, I’ll worry whether I’ll be well enough to go at all, and how much going out will take out of me, or if it will cause a pain spike. Remembering to take spare ostomy kit and spare clothes, medication, my phone in case I got lost, always having a drink with me because of greater risk of dehydration, and so on alleviates some of the worry. However, I’ve even had panic attacks and lots of trouble with anxiety, especially in the last few months, before I made the decision to move. I’ve had mindfulness training and other help with my mental health due to the toll my physical health has had on my mind. I find it useful as a practical skill to calm down if i’m in a state of heightened anxiety. Of course, I still pray at times of worry and panic too, as mindfulness is no replacement for prayer, and nor is it intended to be.
‘Somebody stop me’!
Tomorrow, I’m due to meet up with a faithful friend I haven’t seen in 2 and a half years. I should be excited about seeing her and catching up on all her news. All I can think about is if I will feel well enough to enjoy being out, if my friend will be shocked at the differences in me, and how I will manage to stay calm while navigating an area unfamiliar to me. There is of course, the usual worry over toilets! I will be with a carer as I am unable to do this kind of thing on my own. Much to the staff’s confusion, as they said they didn’t want to feel like a spare wheel in a private conversation. Fair enough… The worries around going out have become enough for me not to be concerned about this, as it is far more important to be accompanied and hopefully relax enough to forget everything for a little while, other than enjoying seeing my friend..
Making such an effort to go out means I’ll have to schedule in ‘recovery time’ afterwards, to try to recoup some of the extra energy used. Going from day to day can mean I need a least one recovery day in bed, so adding extras to my week isn’t easy. It’s very necessary for me though. It’s a big part of feeling as though I’m living, and not simply existing. Being with friends or family energises me, and I love being around people as much as ever. Despite all the effort, I’ll continue to push myself to go to new places and keep seeing my friends occasionally, rather than them always having to come and see me. A carer commented today that I seem to have lots of friends. I think it’s in part because I’ve learned the hard way that you have to be a good friend to others to make good friends. I wouldn’t have it any other way… and I get to nap after!
Over to you….
- Áre you a worrier? I’m interested to hear how you manage those worries, whether it be through keeping a journal, hitting the gym or something else.
- If you also have an illness (physical or mental) or a disability, do you find it difficult to meet up with people or to go out? What are some of the ways you cope with going out, or coping with not being able to go out?
Despite being back on track with my writing now, generally I have found it difficult to write this year, unless something particularly grabs me. This is one of those posts. (N.B. I wrote the remainder of this post roughly six weeks ago, but facing Hospital Transport tomorrow, this post is pertinent!).
Old worries revisited
I have many things in common with fellow disabled people regardless of disability type or severity. Difficulties finding, and keeping affordable transport are almost universal. I’ve barely been out of the house recently, either because of myriad problems with my electric wheelchair, difficulties with care or a health related problem.
This morning, however, I had an unavoidable blood test. I have to use transport to get there so I can have the finger-prick test much like a diabetic person would do to check their blood sugar levels rather than a regular blood test. I am often told children have bigger veins than I do.
This morning was different, because instead of the usual transport vehicle it was a taxi contracted to do the same journey on their behalf. Rude, impatient and uncommunicative and on their hands free phone for the majority of the journey, I was apprehensive about being dropped off at the conclusion of the journey. I should say as far as I can tell my wheelchair was tied down properly.
Not expecting any further help, I slowly pushed my wheelchair towards the dropped kerb. Unexpectedly, someone in the next car addressed the driver, asking if he was on NHS work all day or just the one job. He said ‘just her.’ The driver then said he should really help me get inside so the taxi driver motioned towards me as I inched toward the pavement. I swear my garden snails would beat me. The other driver swiftly said “it’s just we’ve been warned, you know…” Tada, my driver’s attitude transformed. He propelled the chair at speed towards the building and asked civilly where I would like to be, saying thanks as he did so. I think it was for keeping quiet in front of the person who reprimanded him. Job done, he left.
After my blood test, I plucked up the courage to complain. I wouldn’t usually, but I felt I had to this time because I wanted to make sure the same driver wasn’t taking me home. I was concerned others would be at risk if faced with this same driver too, in terms of their emotional well-being if nothing else, or more, if they didn’t get the necessary help either.
Imagine my relief when an ambulance technician I had seen before rocked up. I knew everything would be fine after that.
A timely reminder…
This morning reminded me of an important lesson though. God doesn’t always answer our prayers in the way we expect. I suspect you are wondering how transport and prayer are related? You see, this morning I was in such pain I was almost in tears. I’d prayed God would lessen the pain as I knew I had potholes and speed bumps to endure on my journey, and asked a couple of others to pray too. Being driven by taxi meant being driven straight there rather than all over my side of Leeds to collect others, ensuring a shorter, smoother journey, despite the unpleasantness. Thankfully, on the journey home I’m first to be dropped off. What a relief, answered prayer, and an important lesson remembered.
This is Part 2 of the Weekly Writing challenge from 24 March. The prompt went like this:
Every superhero has an ‘origin’ story of how they came into being. If applied to myself, How did I begin to be a reader, and eventually a writer?
An embarrassing start
I think I was about seven or eight years old when I attempted to write my first story. It was simple and I tried my hardest to write something good. It was definitely a love story. I remember being quite pleased I’d written something from scratch, all by myself. I must have shown my Mum that I’d written it. My family was there one tea time or something, I think my Grandparents were there too. I remember Mum telling me to go and get my story, and how desperately I wanted to say no, because it was not good enough for people to hear. However, I reluctantly brought it.
I remember my mum saying, “this is the kind of stories she writes… and she proceeded to read it out loud. I distinctly remember wishing I could disappear, acutely embarrassed at what was happening, but worse was to come. Mum finished reading it, and everyone laughed, lots. I remember wishing I had hidden it away and not shown anyone.
I wish I had been able to forget it, work on my vocabulary and practice my writing more. The incident when I was 8 really sucked the confidence out of me. I’ve always allowed myself to dwell on embarrassments. I don’t remember writing stories after that. I did write occasionally when 10 or 11 in a diary with a gold padlock and a polar bear on the front. I only wrote stories in school though not always successfully, the rubbish I wrote when asked to write about a chocolate factory being one example! I did have more success with creative writing at secondary School and University, though I never wrote in my free time.
Nowadays, memoir is usually my favourite style of writing, as I love telling stories of memories I have, people I have met, and events I have been to, as well as a spiritual record of the ways God has used the difficult things, as well as the good things to mould me into the person he wants me to become
Lots of my experiences and everyday life in general differs from the norm because of my ‘being unable to work’, through being both ‘sick and disabled’. A fellow Chrons sufferer started writing and campaigning because she was desperate to have this description recognised. When I read that in a tweet I remember thinking — ‘I am so glad someone’s managed to lobby for that and been successful, as well as relief that I wasn’t alone.
Equally when I write posts and publish the material in my blog, if other people comment that I am I not alone in whatever I write about whether it be discrimination of some kind, difficulties coming to terms with health problems or whatever and share their own experiences, it reassure me I am writing about the right things, and I feel privileged others are sharing their experiences with me.
I’ve also written about news items, popular topics, or a longer comment on things I’ve read on other writers’ blogs. I didn’t think I would enjoy writing about current affairs as much as I do. I had a complex that I wasn’t knowledgeable enough, or enough of a campaigner to write on disability issues. However, some people have seemed to get a lot out of what I have written on the welfare state, especially people who previously did not know a lot about it. There are times I manage to engage others, and get a proper discussion going such as a post I wrote in response to a GP’s comments that the majority of disabled people could work if Stephen Hawking can! This went viral, receiving almost 400 views in one day and causing a lot of debate on social media, both in support, and in criticism of my arguments. (I have always loved debate, but was never confident enough to join the debating society at school, despite my Mum’s encouragement at the time).
My dreams slowly grew as I continued writing. At first, I was happy writing solely for the ‘Big Bible’ website. Then I started my Blog because a discriminatory experience buying glasses in Specsavers got me so fired up I had to write about it! As I wrote, I wanted to write more. Others liked my writing and began to read regularly, ‘liked’ my posts, and my confidence in my writing and in myself increased. This continued for at least a year, however, I found that I became unable to write consistently especially since my health has deteriorated. This has really hurt my confidence, because I very much wanted to write and I would often find that I couldn’t. Obviously the numbers who read have fallen dramatically.
For more than ten years, friends and family members have urged me to write my biography. Blogging has given me confidence to think about doing this because so many read and ‘followed my blog at one point. I started off writing a diary of hospital experiences because I wanted my story to from the ab differundance of other biographies out there. I still haven’t decided what to do because I feel totally torn. Is my story ‘different enough’ to write about on its own, and if so where would I start? And what about the thousands of words I have written so far? Writers, do you have any advice / Suggestions?! As for publishing, who knows, there is much too long a way to go before I need to think about that, surely?
I write for the same reasons I Blog. I wrote something this time last year called ‘Drum Roll Please’. I wrote the following about having a way to express myself. “[T]o have found an outlet which I enjoy, uses my gifts, engages my brain, and connects me with people who have similar interests is a joy.” Slightly clumsy phraseology, I admit, but does largely capture how I feel about writing.
God is using me, and my writing. Writing helps me to explain how my faith makes a difference to the difficult times in my life, of which there are plenty. I hope and pray this will be a witness to those who read it. I decided early on that as much as possible I would keep my blog ‘real’, by writing honestly, including the good, the bad, and the ugly, without dramatising things but also without glossing over the tough stuff.
I am mostly confined to my house, but reaching others from my living room! About a year ago, I wrote the following:
I aim to inform as many people as [I] can about the complexities of life with significant needs, and deep Christian faith and to live as full as life as I can. I am aware of other disabled people I know who live fuller lives than I, even with a more significant physical impairment. Though I would sometimes wish my life was more varied, in general blogging is my way of being ‘out and about’; reaching people I would not otherwise meet and finding a creative outlet, while having a lot of fun at the same time!
By searching and reading I am constantly learning, keeping up to date with some of the changes to policy, practice, disability laws, news, and current affairs. I have to discard the scare stories and keep only the useful information if that makes sense. I keep writing because I want to continue to reach out to others, especially those who live with constant health challenges, as I and many others do, and to encourage people, impaired or not, to learn to keep going when life gets extra hard, because giving up is not worth it in the long-term. I continue to need a way of using my God-given gifts, and of continuing to learn new things in a fast-paced world.
I heartily wish that when I was young, I had persevered, and learned the true discipline of getting up early, pouring a drink, and having time ‘quiet time’ to read my bible and pray, before writing for a few minutes, even. I’d like to write daily, and sometimes manage it for a few days at a time, but don’t keep it up as I then sleep through my alarm, or I can’t keep it up as my health gets in the way.
My favourite time to write is early in the morning, say beginning between five and five-thirty am if I can physically manage to wake up when the alarm goes off, and slide into my wheelchair. I sometimes use prompts such as this one from WordPress, 365 Days to Build a Better Blog (Rowse, 2011) or for girls and women Robin Norgren’s books, including Writer Girl (Norgren, 2013) . I had the privilege of chatting with the lovely Robin for a Skype jam session or two a while back. The ‘days’ aren’t meant to put the pressure on for you to write every day, but simply when you have the time, energy and head-space.
Please do let me know if reading my story of my own clumsy beginnings as a writer have encouraged you to have a go for yourself, be it with scrap paper and pencil, fountain pen and fancy paper, spoken memories on Dictaphone, iPod, or mp3 player to write later, or laptop / iPad and word processor.
To have a go at this challenge for yourself, click on the blue text (or tab to the word “challenge at the bottom of this post and press space if you have a screen reader).
Norgren, R., 2013. Writer Girl: 42 Days of Exercises to Deepen your Faith in Your Ability and Your Purpose for Writing. 1st ed. s.l.:s.n.
Rowse, D., 2011. 365 Days to Build a Better Blog. 2nd ed. s.l.:http://www.problogger.net.
Fifteen on Friday is a space where I write about something related to my experience of disability and illness. It stems from ‘five-minute Friday when I followed prompts set by the originator of the site, and I do this with her blessing. It takes me fifteen minutes often, to type what others would type in five, usually just because I get so tired!
They don’t know me like I do…
This week, it’s a subject that really riles me, and so I will do my best not to rant. I should acknowledge as well, that I do this too, though I shouldn’t, given how annoyed I get when people do it to me. So what is it that so annoys me? I can’t stand people making ‘snap’ decisions based on a snippet of information, or on how I look, specifically snap decisions on the severity or lack thereof, of my disability, or that I ‘look’ healthy, so I am healthy, which just drives me mad. Someone else said recently that ‘I hide being ill very well!’ I think so too!
It would be a lot easier to say, ‘I know the truth, and it doesn’t matter what anyone else thinks’, but I’ve always cared. My friend known as ‘Chronic Rants’ blogged how it bugs her people always have to see the negatives in new treatments she tries, or tell her horror stories of how it went wrong for their friend’s friend, their mother, or who ever. Again, people making snap judgements based on a little information. Chronic Rants admits she does it, far too often. I do too. It still smarts when I am on the receiving end.
But you don’t look disabled!
If I am sat in a chair, or laid in a bed, I don’t ‘look’ disabled (nor would I want to). The irony is, neglect to take my cocktail of tablets and I look very disabled indeed, flailing about with arms and legs, shaking when I hold anything, doubled over in pain (which I often am even with the tablets). People see me looking ‘normal’ therefore and think ‘her disability is not that bad’ and voice it. I’ve even had a consultant pummel my arm years ago trying to find a vein, with me almost in tears ‘what’s wrong?’ he says.
‘My arm hurts a lot, cos I have cerebral palsy’
He says, incredulously, ‘You have cerebral palsy? Nobody told me (no surprise there!) But you don’t look like you have cerebral palsy’.He’s not the only one. Nurses have made me walk because I don’t look disabled enough to need a hospital wheelchair, so I’d only have to walk the wee bit to the taxi) and others have asked ‘But how do you manage at home?’ Erm… that’s the point (of asking for help) I don’t. I have invisible disabilities, but I also have a physical disability that looks invisible in certain situations… weird!
However, they don’t see the exhaustion after a few steps, the physio does, or the pain shooting down my legs from trying to stay upright with a Zimmer frame after said steps. They don’t see all the things I can’t do that I have to ask ‘sidekicks’ to do, while wishing I didn’t have to ask so often. They don’t see me doubled over in pain, the professionals in and out of my flat, be they joint care manager, agency manager, nurses, ‘sidekicks’, other nurses for appointments, and house visits from doctors when I can’t even make it down a street or two to the surgery.
Yes, I know, I should put the violins away now!! I am thankful that I can talk (though others may not be when I just don’t shhhh!!), I have an electric wheelchair to get about (though it doesn’t fit in taxis — another story!) and I can move my arms and legs enough to do some things (eat, drink, choose lighter weight products in the supermarket, drive my wheelchair (badly…!) and so on.
It’s something I have to live with, but that will continue to bug me! I guess we all have pet hates like that!
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.
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.
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!
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.
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.
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!
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)
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.
- 30 Things About My Invisible Illness You May Not Know (chronicrants.com)
- Invisible Illness Week (potsierachel.wordpress.com)
- Chronic Invisible Illness Week (jillsmentalhealthresources.wordpress.com)
- Invisible Illness Week (30somethingwitharthritis.wordpress.com)
- 30 Things About My Invisible Illness You May Not Know (currankentucky.wordpress.com)
- Invisible illness awareness week (lupiethoughts.wordpress.com)