Tag: cerebral palsy

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The Pain about Pain

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Pain.

We all feel it, be it a physical pain in our shoulders, arms, legs, ankles, all of these, or in muscles, or joints… We might try everything to get rid of it; from a warm bath, rest, sleep. medications, be they over the counter or prescription ones, but sometimes nothing helps. Even if we take things to block the feelings of pain it may still persist… over days, weeks, perhaps months, or even years in some cases.There is of course emotional and physcological pain too. I’ve taken anti-depressants for years now.

Unfortunately, it is this latter category in which I find myself for the past 3 years or longer, having endured chronic lower back pain since my teens. It all started with a back problem   stemming from how heavy my schoolbag was. Said bag was once weighed by the    head of support for students with extra learning needs or a disability. I think it weighed about 3 stone… At the time, being relatively slim it would have been about a third of my body weight.

Never did I imagine that some sixteen years later that same pain would persist. I was always susceptible to musculoskeletal pain anyway due to my cerebral palsy (CP). Cerebral Palsy is the medical term for a number of disorders and means ‘brain paralysis’, affecting each person very differently. I’d always just assumed that because my walking was wonky, I might end up with damage to my body, especially since my diagnosis was that CP affect both legs from my hips to the tips of my feet. A physio said the pain is likely down to doing everyday things differently just to get by, and it was bound to tell on my body. (MRI Scans last year failed to pinpoint specific causes). I digress, back to the story… 

Determined to achieve as much as possible despite my CP, (and many more problems besides) since school I’ve achieved two Arts degrees, one a Bachelor, the other a Masters, and passed a couple of further education exams in Counselling Skills, as well as doing a couple of guest lectures in what it was like to grow up being labelled as ‘Special Needs’, despite unexpectedly progressing through high school to University and beyond. 

Drawing blanks

I have no idea when pain first began to push its way through into more than a niggle on a daily basis. Perhaps at University, when I first needed a mobility scooter, or when trips to the bathroom become ever more frequent and increasingly painful.

8 years ago, I began to require more physiotherapy, and eventually a three-wheeled walking frame. This took some getting used to, having been able to walk relatively unaided since the age of six, except perhaps for the borrowing of an arm or two. Despite the strangeness at first, and the increasing challenges I faced each day, I carried on managing with my walking frame and the occasional use of a manual self-propelling wheelchair until roughly age 28.
One day, I wheeled myself into a consultant’s room for what I assumed was a routine appointment and left in turmoil. Due to pain of increasing severity becoming the norm on at least a daily basis, walking was apparently no longer an option. Months of assessments followed until one day, my shiny new electric wheelchair arrived. It was now the beginning of a more painless future. Or so I’d hoped. Several medication changes have made a bit of a difference to one type of pain, and then another have been necessary to try to block a newer kind of pain.
Warm-water based exercises weekly used to stretch, strengthen and condition my aged body, but  I’ve since moved to an area where Hydrotherapy is not available. I did start on new pain patches which helps, but I always have some pain. 

Female model shown in 9 images with a read blotch indicating a different site of pain


There is little doubt my pain is chronic. Chronic pain is continuous, long-term pain of more than 12 weeks or after the time that healing would have been thought to have occurred in pain after trauma or surgery.

British Pain Society, 2015 http://britishpsinsociety.org

Different sites Inc. the one above estimate between 10-14 million people in UK live with chronic pain. Ouch! 

This is the pain about pain. 
To collapse into bed at the end of one painful day only to struggle to find a comfortable sleeping position for any length of time, and the pain to continue all night long and be with me into the new day too. The pain about pain is its sheer persistence. It doesn’t care who falls victim to it, or what one’s plans are, or what problems it exacerbates. 

The day one or all meds stop working is a day I pray will never come, though I know it’s possible. I’ve begun physiotherapy again, with the aim initially of becoming stronger and fitter for an upcoming major surgery, “elective” for the first time in my life. Really I have no choice about it,  just planned, as opposed to being a emergency. 

I’m aware many are in a worse situation than me, have no access to clean water, food or shelter, never mind pain relieving medication,  antibiotics or appliances such as stoma bags.

Equally, there are many who never need to give pain a thought save perhaps the occasional headache. For those who battle pain day in, day out I feel solidarity with, but wonder how we continue to fight each day. 

Emotional and psychological problems add to the burden

At least 1 in 4 in the UK battle psychological and emotional pain in the form of one or more mental illness. While I don’t have a mental illness as such, I do have Reactive Depression, a result of living in so much pain for so long, not to mention the emotional and psychological chaos that comes with constantly managing all that comes with it. 

Stay tuned for the next in my series of posts on pain, on depression and loss.

The Persistence of Pain

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Pain. We all feel it, be in a physical pain in our shoulders, arms, legs, ankles, all of these, or in muscles, or joints… We might try everything to get rid of it; from a warm bath, rest, sleep. medications, be they over the counter or prescription ones, but sometimes nothing helps. Even if we take things to block the feelings of pain it may still persist… over days, weeks, perhaps months, or even years in some cases.

Unfortunately, it is this latter category in which I now find myself, having endured chronic lower back pain since my teens. It all started with a back problem stemming from how heavy my schoolbag was. Said bag was once weighed by the head of support for students with extra learning needs or a disability. I think it weighed about 3 stone… At the time, being relatively slim it would have been about a third of my body weight.

Never did I imagine that some sixteen years later that same pain would persist. I was always susceptible to musculoskeletal pain anyway due to my cerebral palsy (CP). Cerebral Palsy is the medical term for a number of disorders and means ‘brain paralysis’, affecting each person very differently. I’d always just assumed that because my walking was wonky, I might end up with damage to my body, especially since my diagnosis was that CP affect both legs from my hips to the tips of my feet.

Determined to achieve as much as possible despite my CP, (and many more problems besides) since school I’ve achieved two Arts degrees, one a Bachelor, the other a Masters, and passed a couple of further education exams in Counselling Skills, as well as doing a couple of guest lectures in what it was like to grow up being labelled as ‘Special Needs’, despite unexpectedly progressing through high school to University and beyond. 

I have no idea when pain first began to push its way through into more than a niggle on a daily basis. Perhaps at University, when I first needed a mobility scooter, or when trips to the bathroom became ever more frequent and increasingly painful (more of than on World IBD Day (19th May).

Some six or seven years ago, I began to require more physiotherapy, and eventually a three-wheeled walking frame. This took some getting used to, having been able to walk relatively unaided since the age of six, except perhaps for the borrowing of an arm or two. Despite the strangeness at first, and the increasing challenges I faced each day, I carried on for managing with my walking frame and the occasional use of a manual self-propelling wheelchair until the age of about 28.

One day, I wheeled myself into a consultant’s room for what I assumed was a routine appointment and left in turmoil. Due to pain of increasing severity becoming the norm on at least a daily basis, walking was apparently no longer an option. Months of assessments followed until one day, my shiny new electric wheelchair arrived. It was now the beginning of a more painless future. Or so I’d hoped. Several medications have made a bit of a difference to one type of pain, and then another have been necessary to try to block a newer kind of pain. Successive appointments with different doctors followed, and for a time I was reasonably comfortable. 

However, this is now no longer the case. Most of the time, medications, microwave heated (wheat bag) animals and hot showers make a bit of a difference along with warm-water based exercises weekly but nothing really helps to the point of being in no pain at all. Those days have gone. 

Take today for example. Waking up to buzz my carer into my flat, only to realise once she flicked on the light switch that I was in agony from one side of my forehead to the other, and from one shoulder to the other, and in-between my shoulder blades, aching in the middle and culminating in some of the most intense lower back pain I’ve felt. It was time for emergency pain meds. Never one to admit defeat if I can help it I carried on with my day, seeing a good friend for a cuppa, only to crawl back into bed at lunchtime and stay there the majority of the afternoon. My bedtime is now fast approaching just as the lower back pain is increasing all over again. 

I’m aware many are in a worse situation than me, have no access to clean water, food and shelter, never mind medication. Equally, there are many who never need to give pain a thought save perhaps the occasional headache. For those who battle pain day in, day out I feel solidarity with, but wonder how we continue to fight each day. 

This is the pain about pain. To collapse into bed at the end of one painful day only to struggle to find a comfortable sleeping position for any length of time, and the pain to continue all night long and be with me into the new day too. The pain about pain is its sheer persistence. It doesn’t care who falls victim to it, or what one’s plans are, or what problems it exacerbates. 

Thankfully, I know One who felt more pain than I will ever feel. One day my pain will cease and all I will know is perfect joy and perfect peace. Not I the centre, but He. Until that time I push on, not in my strength but with His power. Pain pulls my focus back onto myself. What I’m feeling, what I need, my ruined plans, rather than His purpose. Tomorrow is a new day. Regardless of the persistence of pain, I will wheel on beside the One who endured it all for me.

Gifts

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As October is now upon us, I imagine that, for many for you, your thoughts are beginning to turn to gift buying for Christmas. Which gifts, for who, and from where, and how to spread the cost over the weeks. So will I shortly. However, here, we are talking a different sort of gift. Specifically those our Heavenly Father gives us to use for the benefit of others. These type of gifts are also known as Spiritual gifts.

While working through my morning devotions one day, I came across a nugget of truth from Joni Eareckson Tada. She writes, “Giftedness works best in people whom the world would never choose to accomplish a task.” (Taken from email devotional on 6/9/14. This includes but is not limited to those the world labels slow, difficult, different, disabled, elderly, unskilled, special needs… I am sure I could fill most of this page with such labels! Nowhere is the truth of this statement more clearly seen at my local Christian enterprise, where those who fit such labels are encourage to try different projects until they find the one thing they excel in, or too put it another way, their gift. Many do not know what they are good at, as they have never had the opportunity to find out, or been encouraged to do so, or indeed may have been given so many labels by different people or so used to failure they do not feel good at anything. Equally, most people would not expect a premature baby who has undergone at least 5 major, sometimes catastrophic surgeries, and who has endure intensive care more than once to have gifts either. However, God can use anyone for his glory, be they myself, or someone at the local Christian enterprise, or indeed, the gentleman in the YouTube video. Please, do take the time to watch, and thank God that his gifts show up in those we do not expect to have anything to offer us. Take some time today so consider what your own gifts might be, too, if you have never done so. More of my story to follow on Monday. For now, enjoy the video! (N.B. See this website for more information).

Writer in the making….

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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).

Bibliography

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.

 

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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Fall(s)? Leave it to the expert!!

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Though I be only young, I consider myself an ‘old pro’ at some things, having experienced them over and over again: hospital appointments, meds, blood tests, ex-rays, scans, blood tests… and falls. My parents worked so hard to help me to walk. Dumping me on the floor as a wee one, and making me crawl to the towel. Plastic splints, special boots, crutches, zimmers, I’ve used them all. I’ve fallen on all kinds of surfaces: concrete. tarmac, orange tarmac, sand, bark… I’ve been picked off the floor by all kinds of people, and I myself am an expert! When I fall, I can do forward rolls, backward rolls, back flips, avoid obstacles by automatically throwing myself in the opposite direction. My brain has taught itself how to fall. Others have been in awe of me, many times. I think I’ve found my gold-medal winning sport…

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This post is part of five minute Friday! Leave me an encouraging comment, and then head over to Lisa-Jo’s site and have a go yourself!

 

Movie of the year?

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Yesterday’s daily prompt caused me to look at it twice! I have often be told that my story would make a good book, or that I should write my story down one day. I guess I have done this in partial way as some of this blog includes memoir style material. As I know who I would love to play the lead, I would love my story to be a book and a movie. Carey Mulligan would be perfect to play the lead in the movie version of the book. Great actress who would draw in the punters, and who has played characters in movies belonging to the drama genre before, including but not limited to her role in the likes of An Education.

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This biopic certainly includes plenty of drama. More than one near death experience, disability, illness, life-saving operations, love, romance, faith, and miraculous scenes, including a couple of appearances from royalty…. There are also many supporting roles, with a great support cast. There is also potential for future movies given the relative youth of the protagonist… However, let’s focus on this particular movie for now.

Drawing of a film reel
Drawing of a film reel (Photo credit: Wikipedia)

It begins with my early life, with me being rushed to a special care baby unit, having been born 12 weeks premature at 28 weeks gestation, following an emergency birth. There is a touching scene early on, and the first of the miraculous moments, which shows the story of how I got my name. Some of the crucial scenes in my early life will keep you on the edge of your seat; including visits to resus, and touch-and-go operations where I was the smallest baby the surgeon had ever operated on.

My early childhood was no less dramatic, as my brain was starved of oxygen at some point before, during or after birth, resulting in a diagnosis of Cerebral Palsy. The diagnosis was certainly bleak, as it included intellectual delay as well as physical disability, and the extent of these was unknown at the time. Consequently, from a few months old until I was 3 or 4 I attended a centre for babies and children with special needs. Here i received input from a pediatrician specialising in Cerebral Palsy, physiotherapy, and specialist care. The next miraculous moment shown on film would be that I had progressed enough to be one of the first children with a disability in my region to attend a mainstream nursery. I would later meet 2 of those who had attended this nursery at secondary school!

Some time after this, there was a house move to Dunblane, where I attended nursery, and went to the same school that Andy Murray, tennis player extraordinaire would later attend!! In my first two years at primary school I had a full time assistant with me due to my level of need. When I was six, we moved back to Aberdeen.

In some respects, my primary school life was largely uneventful when compared to the events of my early life, so this would play no part in the review, though would occupy a few scenes in the movie. Miraculously, I caught up intellectually, and when I was 11, had no further need of the assistant who was with me for four years, as I was able to continue primary school on my own. This caused a ruckus at the time. Secondary school too would play no major part in the movie. There was a house move at age 14, where I stayed until I moved to central Scotland to begin my first degree in 2001. It was here I would meet some of the friends I still have today, and where I would meet my current ‘Special Someone’… though a little more of that later!

The move to university was one of 5 days which changed my life forever, and the events of these 5 days, or even periods of my life, would be the focus of the major part of the movie focusing on my adult life. The only exception to this would include a scene with my childhood ‘adult baptism’, in which I explain why Jesus became the central focus of my life, (or certainly should have been!!) from then on. The next part of the movie would include university days, which showed the beginning of adult illness.

Further scenes became more dramatic, including a move across the border, a life-saving operation, the scene in which I was told I would now require an electric wheelchair full time, and the scene in which I was told I had no choice but to have the ‘care’ I had tried to avoid from age 22 when other disabled friends begin to suggest it, Other scenes include a couple of romances, one on/off romance with a childhood best friend, and another with a former Paralympian!

The movie ended with an update to the present day, showing some of the complexities of life as a wheelchair user who needs help with the basics of life, but has a stellar supporting cast, including the events which explain the introduction of ‘Special Someone’, and the reliance on faith to survive, and thrive through every day, eventful or not. The movie therefore fits the ‘Christian biography’ category, but is far less cliched than some representations of the genre!!

To be continued…

CP awareness month, (in the USA)

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A lot of the blogs I follow are based in the US or Canada, especially if they are written by other people with cerebral palsy. Of these, Babbles from Brooke is my very favourite. It is through reading these blogs that I learned March is Cerebral Palsy (CP) awareness month. As far as I am aware, there is no such month in the UK. I wonder if it would make any difference to Government policy if there was?! 

I’m often asked what cerebral palsy is, whether by nursing students, carers, or even new friends. I was reading through some CP-specific blogs and came across this info-graphic which the writer gave permission to share as long as the info-graphic was posted in its entirety.

Image
The image shows which types of cerebral pasly (CP) affects which parts of the body. The first image shows ‘Monoplegic CP which affects one limb. The second image shows ‘hemeplegic CP’ which affects one side of the body. The third image shows ‘diplegic’ (CP) which affects either the legs or the arms, and finally the fourth image shows ‘quadriplegic’ cerebral palsy which affects all four limbs. Here’s the link to the original post by ‘Fork. Needle. Pen’: http://forkneedlepen.àwordpress.com/2013/03/19/types-of-cerebral-palsy-infographic/

 

I’ve seen a statement on a blog which claimed the CP does not worsen over time. However, new research shows that the symptoms of cerebral palsy can worsen over time. This doesn’t happen to everybody, but it has happened to me. I first heard about this from a friend, because it happened to her friends. Some aspects of the medical profession now also subscribe to this belief. If the symptoms of cerebral palsy worsen, it can often happen between the ages of 28-30. In my case, because I have near enough always walked have damaged my joints enough to be in constant chronic pain, for which I have a cocktail of medication. Eventually it got to the stage where I could no longer support constant walking, and a rehab consultant told me I would need to use an electric wheelchair full-time  or else I would need to be hoisted in and out of said chair in 2 years time if I continued to walk the way I was. This was something of a shock.

It has been compounded by my being unable to drive. When I was assessed by an Occupational therapist (OT) by a variety of tests including identifying signs, using a driving simulator and the infamous block test which tests spatial awareness, or in my case the lack of it. Apparently my reaction times were so erratic that I would need to use hand-controls to operate a car. This was likened to rubbing your stomach and patting your head at the same time. My co-ordination not being up to it, that was that.

Now I use a wheelchair  it both compensates for this, and compounds it. Transport being what it is there are plenty times I have to take a carer and my little chair in order to use taxis.

When I was 16, I began to have spasms. I have no explanation for this, as I never had them as a child. These have also worsened overtime, and have meant covering friends in tea, feeding my dinner to the floor, or occasionally punching someone!! Although I was originally diagnosed with diplegic cerebral palsy affecting mainly my hips and legs, I have some trunk deformities, and struggle to turn my head. My ability to drop things is also legendary as I spend half my life retrieving things from the floor, sometimes causing myself much pain in the process. If anyone knows of a good value ‘reacher’ your suggestions would be gratefully received!

I was adamant that my blog would be about more than just cerebral palsy, however, I figured there was no harm in the occasional post. I’ve always been very open about my cerebral palsy. Hopefully whether you know lots about cerebral palsy or nothing at all this post has been useful to you. If you have any questions (within reason!!) I’d be pleased to answer them. 

since the time of writing I have since found out 4 september is World Cerebral Palsy Daywho knew! !

not your average memories…

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Wherever I write about food it’s never that well read. I don’t know whether I lack the skills to adequately describe it, or people don’t expect me to write about it, but this time this post is to do with food. For me though, the important bit is the people I am sharing my favourite meals with. I generally love something I have not had to make myself!

My favourite meal about 4 months ago was fairly simple. I was at my favourite pub, at a table at the back of the restraunt, in the corner. Someone I thought I was in love with was holding one of my hands, and chatting away, leaving me free to eat with the other hand. To save myself some embarrassment  I had picked finger food I thought I could eat with one hand. Perish the thought that I might have to spoil the first date/meal out/pub date by asking my date to cut my food for me! I had taken a risk and chosen messy food. Risky strategy for someone with cerebral palsy. Dare I take a risk and say there is something a bit sexy about messy food?! (TMI??!!) cheese, nachos, salsa, sour cream, guacamole. A huge plateful meant there was no need for chips, a starter or a desert.

I do not remember what we talked about. I just remember the general things. How it felt to finally hold hands, to see the face the voice belonged to, to have the opportunity to do such a human thing and feel ‘normal’. The food sounds remarkably plain, even if you add in a half of draught cider. In my opinion, good company can make the plainest of food taste amazing, especially if it’s something I make for others and it turns out well, no matter how simple it is. It is often such a delight to do something for other people for once, instead of me being served.

I have no idea how long we stayed in the pub. I remember the minutes we waited for the taxi. I will spare you the details, save to say I was glad I hadn’t eaten a massive meal when my date decided it might be fun to lift me. We are no longer in touch, because things came to a natural end. I hope one day I get to have a first date with a gentleman who may be ‘the one’ as this person did not prove to be. For now though, I remember it with fondness and satisfaction, and somehow separate from the rest of it.

The next time I went to this pub, I went with friends, and had what was my favourite meal from my childhood. SCAMPI, (shrimp?) and chips. Homemade scampi no less, and the obligatory half pint of cider. It more than just satisfied my hunger, as it proved to live up to the memories too, of countless childhood fish-shop suppers. Hot, salty and delicious. I wonder who I will visit my favourite pub with next time?

If only they could see me then…

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London
London (Photo credit: @Doug88888)

I guess I would say I have had a few surreal experiences in my life, given my precarious start, and the diagnosis which said thinks like I wouldn’t walk or talk, maybe be basically a adult-child in a chair. at eight months old, I was 6 months behind,. mentally, and it was anyone’s guess whether I’d catch up or not.  Catch up I did, but only after 4 years of intensive medical care, operations, thousands of pounds worth of therapy, a few years in a ‘special’ (needs) nursery and more besides.

Ordinary things others achieve have been momentous for me, as they have been for other children with cerebral palsy, or experience of congenital disability in general. After that there’s the really ‘out there’ moments; snapshots in time where I’ve almost had an ‘outer-body experience’… I’m both in the moment, and watching the scene from above. These would include the rugby union lesson in P.E. in primary seven, I was good at it, me who wasn’t expected to walk; but the real subject of this post is the award I got when I was 17 for the highest marks in the Health and Food Technology exam in Scotland.

I got to go down to London to the Royal College of Physicians  and meet Princess Anne, and be part of a celebratory lunch, banquet style. I remember very well the ‘Library’ where the presentation was. It was just beginning of the fur-ore surrounding the ‘Harry Potter’ franchise.  I remember walking into the room and thinking it really did look like something out of Harry Potter, dark mahogany bookcases from floor to ceiling, wooden floor, and a cavernous room. We also got treated to a visit to the ‘London Eye’, and I remember a coffee at one point which was the size of a small bucket. I also remember the flight down to London from where I lived in Scotland, and not liking it much. BA staff also tried to tell me they’d lost my wheelchair. that would be because I didn’t own one at that point ! Snapshots in time, that I know happened, but still feels somewhat surreal, two University degrees later. Every-time I see her in the crowd at Murrayfield to watch Scotland play rugby, my mind wanders back to that day. Maybe I’ll get to meet her again one day, though it seems unlikely. Even if I do, it still will not top that day in the 18th year of my birth. If the doctors present in the first year of my life could have seen me then, it would have been surreal for them too!