word cloud started with "accessibility"

The Pain about Pain

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.

Taking inventory: From the outside looking in

Winding the clock back to the end of December last year, when the New Year was so shiny and new it had yet to begin, I had a conversation with my therapist where I had a definite “light-bulb moment”. In need of motivation for the year ahead, I decided to write a list of up coming events and extras (mostly outings)  which would give me something concrete to look forward to, brightening my semi-life..

During the year, I’d attended several weeks of a pain-management program. We were taught how to set manageable goals, by making them S.M.A.R.T.:

  • Specific
  • Measurable
  • Attainable
  • Realistic
  • Time-bound

My “Looking Forward” list was an extension of this technique. I followed one last piece of advice from the psychologists, which was to make goals public to give help to be able to stick to them, injecting intentionality into the project.. That’s why I published it as a blog post. Friends and family heard of, or read of, my plans with enthusiasm, and encouraged me to do my utmost to accomplish as much as possible.

The original list from 27/10/15 was as follows:

“In 2016 I’m looking forward to….

  1. Becoming an Auntie for the first time
  2. A close relative’s big birthday
  3. Going to see Boyce Avenue (a band who first found fame on YouTube coverong
  4. Going to indie food fest
  5. Going to a theatre show (yet to decide on what, where and when)
  6. Going to the seaside I miss the sea
  7. Visiting Susan with Debs and a sidekick
  8. Listening to Daily Audio Bible Every Day
  9. Keeping a gratitude journal (find a regular time to do this every day. Maybe 6pm?)
  10. Keeping up with Pain Management Programme activities:
  • Review goals on a bi-weekly basis
  • Every Thursday at 11.30am read through PMP course material
  • Practice mindfulness at these times minimum
  • Review Activity Level – is it at as steady a level as possible day by day?
  1. Reading a book a month on a completely new topic I know nothing about.
  2. Going to a different church from mine every 6 months
  3. Streamlining my spending (not sure yet what this looks like
  4. Sending a small but appropriate gift and/or card to a friend going through a hard time, Aim to do this a few times this year.
the days that changed my life
month-per-view calendar

Six months on, my life is unrecognizable, partly from the move to a new area, no longer living independently and receiving 24/7 care. Some items on the list have had to be abandoned, (was unable to use passes for indie food fest,)as it is harder now to find carers to accompany me on outings, since the home can be short-staffed at times, and everyone is needed here. The home do their absolute best to allow some of the requests where at all possible. Going out is now mega-tough.

It wasn’t all good!

Items 8 and 9 required habit-forming to really impact my life, and sadly this just did not happen. At the end of last year and beginning of this one I had a period of illness where I was unable to leave my bed at all, due to a nasty bout of cellulitis in my good foot, which lasted 5-6 long weeks. The antibiotics alsocaused havoc in my body, lowering my immune system, and ensuring another infection soon followed. Once all of this had healed, I became more fatigued than I have been for years, losing the energy I had built up with extreme care over a number of weeks while attending the Pain Management Programme and building activity levels. I’d been feeling better, and that was all gone. Upset, my mood sank lower, and my comping mechanisms became more and more erratic. A care-planning meeting added to the upset at the time, as it seemed nothing was achieved at all that was much practical good. However, those who needed to realise just how hard things had got for me began to see just what I was facing, the first of several answered prayers in the first 3 months of the year. Some weeks later, I was given respite, and following that, funding to make it a permanent move. The swiftness of the answer meant that no one was prepared for it, and 10 minutes before leaving for the Boyce Avenue gig, I finally heard the answer I’d been seeking. Almost 3 months on, I’ve now settled in the home.

First Gig in Years and a meet n’ greet!

Fortunately, some items on the list were completed before the move, and some I’ve documented in this blog. I became an Auntie to baby Euan on 11th February this year. I made it to my Gran’s 80th Birthday meal at the end of May, and loved it despite all the effort. Going to the Boyce Avenue gig in mid-March was a guaragutan effort too. Organising a side-kick, taxis to and from the O2 Academy, and the all important tickets of course. To ensure I’d no problems with my ostomy while out, I just didn’t eat an evening meal, and drank as little as I could. I’d guessed, correctly as it turned out, that getting to the disabled toilet would be a palaver, and this was the only way to avoid those stresses. My strategy worked until I got home, which was a relief. I didn’t want to miss any of the gig and was fortunate enough to briefly meet handsome Calum Scott, from Britain’s Got Talent (2015), the support act to the UK-leg of Boyce Avenue’s tour. If you are wondering who the heck they are, check out the You-Tube links to their music.

Despite all the upheaval in my life, I’ve managed to continue thinking about what I learned from the Pain Management Programme, and attend two further sessions, but missing two due to illness. I’ve pulled out of the programme now due to the difficulty of travelling two or from Leeds, and of finding a side-kick. However, at an appointment this week, I’ve been given a reading list, and will be sent programme material in the post at the times the group meet with each other. Very happy with those arrangements, to allow me to continue learning and accomplishing my goals. One, was to gradually begin writing and publishing blog posts again, another to continue with gentle exercises and stretches I was given while attending the course, and the other goal to go out with visitors rather than staying in. Due to my change in circumstances, the third goal is not so achievable. I know I am doing as much as I possibly can and am learning to be content with that.

I’ve surprised myself with how much I HAVE done, and I’ve gained new memories, made new friends, re-acquainted with old ones, and built on aspects of myself I knew needed more work. I have more confidence from pushing myself despite often feeling lousy. Doing more has pushed me to want to do more, despite reduced energy levels these days. The days in-between activity days have become recovery days rather than rest days. Having a ‘rest’ just is not enough. I’ve needed more and more sleep after outings, and even in the days before hand. I now read veraciously, and more widely than before, from Women’s fiction, poetry, books on how to write poetry, fiction or memoir, a book of Spurgeons sermons on prayer, which I’ve not long begun, and many more, even some YA books. I colour in, am back listening to music, and nudging my friends if it’s been a little long between contact.

I’ve yet to go to the theatre, but have recently been to the cinema, and have plans to go again to see the much talked about movie version of ‘Ab Fab’. Hopefully I’ll get to see the seaside over the summer, possibly visit my friend Susan who doesn’t live all that far away.  Of course, I have yet to have the operation I’ve been waiting for.I’m looking forwsrd to getting rid of my heavy hernia! I am sure there are other things I can add to the list. If you have any suggestion, feel free to post a comment below.

What’s so hard about going out?

‘Worry Wart’

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.

Argh….!argh

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, chronicillnessmeme2to 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?

The costs of being a “Social Butterfly”

Effort-fully flawless

I’ve been talking about my Gran’s 80th Birthday Party for months. Finding a venue wasn’t straightforward given the necessity of wheelchair access, and a properly “accessible” toilet, plus a function room easily navigated by an electric wheelchair, and a buggy, and enough room to seat everyone else. Through the effort of more than one person, this was successfully achieved.

2016-05-28-11.38.06.jpg.jpeg
All dressed up in my pink lace dress, hair curled, make-up done, with somewhere to go.successfully achieved.

Despite knowing this, I knew I wouldn’t sleep much the night before. There is always too much to think about. Eating little the day before, but drinking the full jug of electrolyte fortified water, helped minimize risk of accidents as much as possible. I knew found a dress that would be comfortable enough for sitting in a wheelchair, and shoes that matched the dress but were still easy enough to walk in.

Getting ready still took me and two carers more than an hour but the finished result was worth it. I still had anxieties over the journey, and surviving the day well enough to enjoy it.

Surviving, and thriving

I found the journey very difficult due to delays and roadworks. Circling roundabouts feels very different when travelling in a wheelchair-access van. The chair pulls you one way, and the roundabout another, despite being clamped in and wearing a full seatbelt. I tell you how relieved I was when we finally landed. I found a corner where I could easily see everyone, and finally settled Eschewing the sparkling wine and orange juice for my usual electrolyte water, I enjoyed all the catching up. My Gran loved it all too, despite protesting months earlier that she didn’t want a fuss! 🙂

img_2996.jpg
My Gran’s gorgeous birthday cake, decorated with purple flowers and lots of twirly icing.

Dinner was lovely, melon and sorbet, followed by roast chicken and all the trimmings, and berry pavlova for sweet. I considered snapping pics of the plates, but decided I rather enjoy it than photograph it all. Drinking decaff coffee all the time means the after dinner coffee energised me. Enough for a ‘walk around the golf course with my mum, grandparents and nephew. Loved the fresh air and wildflowers/weeds. My favourite bit was all the catching up with family I hadn’t seen for months, and being able to whizz round the room in my chair to choose who I wanted to talk to. This was thanks to the room being re-organised by my Auntie the night before. All too soon, it was time to head back to the home. I even had an impromptu leaving party round the van!

 

Post party hangover

I was of course, exhausted when I got back, and continued to feel shattered even after a good night’s sleep. It was 3pm before I was even awake enough to get up. If asked how I felt yesterday, I would have said I was drowning in fatigue, drunk on sleeplessness, despite not touching a drop[ of alcohol. It’s a big effort to participate in family gatherings or other events, and takes a toll on me afterward which I am still feeling today. Staying in bed would have likely made me feel worse, so I got up very reluctantly. Now I’m managing to write, I’m glad I made the effort. I have fabulous memories of the weekend, and photos I can keep forever. I was able to celebrate with my Gran, and the rest of a family I love to pieces. No price can be put on that, even in terms of energy reserves used. The effort required is always worth it, no matter how much ‘recovery’ is required afterwards.

From a modern flat to a big, old home….

12974270_10153389935261898_3412654725083429368_n
A recent photo of me with my nephew, taken in my new room in Nursing Care facility where I now live. 

From ‘independence’ to full-time Nursing Care

In the last little while, I’ve moved into residential care. Not a decision I took lightly but living independently was seriously endangering my mental health. Respite was arranged in a hurry as I desperately needed a rest. A few days after my arrival, I was a different person. I’d had more sleep then I’d had in a very long time, in part due to sleeping on a specialist mattress to try to ease some of my pain. I’d had proper meals, and help with the projectile stoma output which had been giving me so much grief at all hours of the day and night. I very quickly made friends, and there are as many activities available as possible given that the home is maintained by a national charity, and as such, relies heavily on volunteers. I did play more than one game of scrabble that first week, which I loved.

At the end of the week, I hadn’t heard if there were any changes to my care plan at home and I knew I couldn’t go back for any length of time and not get in the same mess. I knew deep down there was no money for any more care at home. Long story short, I’m now in residential care full time. I’m much happier, certainly safer and healthier than I was living on my own, latterly.

Disconnect in Well-Connected Times

Of course, as with any move, there will always be teething problems. These have become apparent very quickly. The manager is trying hard to get something done about the sweltering heat, and the problems with water. The care I have is generally absolutely brilliant, especially now people have had time to get used to the idiosyncrasy of doing stoma care on my behalf. I may have startlingly high levels of pain and fatigue, and the medication needed to manage these has it’s own side effects. Staff have begun to recognise the signs, and remind me to rest often. I am slowly developing my own routine in amongst my varying levels of health. I love visitors and thrive on being around people.

There’s just a weeny problem. The house is old, and has been extended. The house has been blamed for the non-existent Wi-Fi in upstairs rooms but that was only part of the problem. Finally, a solution has been suggested and will hopefully be implemented fairly swiftly. It needs to be. After all, personal care and support is paramount, but access to social support, which arguably includes Wi-Fi is nearly as important. I look forward to the day when I can skype when I chose to, including family as well as my therapist. I am almost wholly dependent on social media for keeping in touch with my wonderful friends, who I really miss, as well as church family and blood family. I also rely on Wi-Fi to conduct research for blog posts, and find other sits to write for. Being a girly girl, I make occasional purchases too.

My life has diminished enough without losing touch with people or losing the blog altogether. These are crucial contacts for my own sanity, some of whom offer online support with my chronic illness and disability. Why should any of this have to suffer simply because my circumstances have dramatically changed? It’s time residential care caught up with the times!

Over to You:

Do you think WiFi access is important in today’s world? Why, or why not?

Do you live in supported living, residential care or a nursing home, is Wi-Fi access considered a priority? Should it be?

Do you have any other comments to make. Perhaps you disagree with me. I’d love to hear from you!

In 2016, I’m looking forward to…

Resolve to change NOW!

I have never been a fan of New Year’s Resolutions, and as far as I remember have never kept a single one. While stuck in bed being poorly, I tried to think of an alternative but got a bit stuck until I saw a Facebook post from my friend Bex saying she didn’t see the point in New Year’s Resolutions, because change could be made now, rather than waiting for a specific date. I quite agree, I thought. Just at that same moment, I remembered the film, “The Bucket List” where two men who meet in hospital by chance decide to list all the things they’ve never  done and would like to do before they ‘kick the bucket’and began compiling one of my own.

Teenage Crushes Revisited

I also told sidekicks and friends about it in the hope this would encourage me to stick to it. This had been one of the tips given for sticking to goal setting targets… that announcing intentions means other people can encourage you to stick to whatever you’re aiming for. I started to think, what did I used to love which I no longer do? Almost immediately, memories of my now long forgotten boyband obsession crashed into my head, of my first ever concert gig in a small, sadly now demolished theatre in Aberdeen when I was 12. With my Mum, in the second row, me caterwauling along, or screaming, by turns! The same theatre with my best friend a couple of years after that to see 911. AECC with the bestie to see Boyzone or Westlife, on several occasions. Edinburgh playhouse with a church friend to see Gary Barlow, from Take That. Oh yes, I went to see one or two other artists, Katie Melua was definitely one of them. It was one of her first tours I think, if not the first, at the Clyde Auditorium (aka the ‘armadillo’ ) in Glasgow.

After at least a ten minute reminisce I began searching for upcoming local gigs. Being more restricted than I used to be I decided I definitely needed something which was in the same city as I now live, with space for my wheelchair, and a carer beside me. I admit to squealing when I realised one of my current favourite acco8ustic/acapella groups was touring in the first part of the year, and even better, it was a local event, with wheelchair spaces still available. Those tickets reserved, I began searching my brain for something I’ve always wanted to do. It didn’t take long for an answer to jump into my brain. Food Festivals! Never been to one, and also never properly tried ‘street food; which I really liked the sound of whenever it’s been featured on food programmes. Quite a lot as it happens. Within a few minutes, I’d sorted out passports to an indie food fest. Quite an accomplishment to figure out all this and book it all, within an hour or so, given that I often forget what day it is, or fail to stay awake even sat up in my wheelchair!

Keeping the ‘announcement’ tip in mind, I excitedly told my therapist about my list, delighted to have something very positive to say, and things to look forward to, not to mention having come up with part of the solution to some of my struggles. Being chronically ill and severely disabled is very isolating much of the time, not to mention lonely (though I have fabulous friends and family) and it can be impossible some days to find anything good to focus on, and the days often stretch out in front of me. This is when more difficult thoughts arise, for example “will I still be in this same place feeling like this in (X) number of years’ time? I think of all the ways I am now restricted, and my world contracts much more even that the four walls it often is. This is especially true in times when I don’t have the usual barrage of appointments or sometimes endless admin tasks.

I finally thought of an appropriate title.

“In 2016 I’m looking forward to….

  1. Becoming an Auntie for the first time
  2. A close relative’s big birthday
  3. Going to see Boyce Avenue
  4. Going to indie food fest
  5. Going to a theatre show (yet to decide on what, where and when)
  6. Going to the seaside I miss the sea
  7. Visiting Susan with Debs and a sidekick
  8. Listening to Daily Audio Bible Every Day
  9. Keeping a gratitude journal (find a regular time to do this every day. Maybe 6pm?)
  10. Keeping up with Pain Management Programme activities:
  • Review goals on a bi-weekly basis
  • Every Thursday at 11.30am read through PMP course material
  • Practice mindfulness at these times minimum
  • Review Activity Level – is it at as steady a level as possible day by day?
  1. Reading a book a month on a completely new topic I know nothing about.
  2. Going to a different church from mine every 6 months
  3. Streamlining my spending (not sure yet what this looks like
  4. Sending a small but appropriate gift and/or card to a friend going through a hard time, Aim to do this a few times this year

I am sure there are other things, but I am chuffed with what I have decided on so far, alongside the events which are already happening next year. I’m still pretending 2016 is more than just a few days away!

Over to you….

How do you welcome in a new year?

Do you make New Year Resolutions?

What are you looking forward to in the coming year?

I’d love to hear your plans and share ideas!