The cake-crusader tackles faith, pain, disability and life in general with honesty & cheeriness
Giggly Scot who uses wheels to get around. Chronic illness. Evangelical Christian, #spoonie. writer, colour-in-er, avid reader, choc-a-holic. My blog's a hybrid of all the different parts of my life. #wheels #care #mentalhealth #family #friends #faith, politics, and life in the UK as a woman in her mid thirties defying most norms!
My old flat (apartment) was my safe haven from the world, my place to hide. The urgency with which I’d roll in from outside, heaving a sigh of relief, the peace swaddling me, silence surrounding me. I could chose when to break the silence with voices, be it tele, radio, Skype calls to friends or family. At other times, after days, and sometimes weeks of confinement, the walls would close in, silence swallowing me, my mind protesting the peace, longing for someone, anyone, to brighten the place with their friendship, stories, or news.
Anyone, that is, but the not-so welcome ones: Doctors, nurses, carers, healthcare assistants, delivery drivers carrying in parcels or shopping. I’d often feel torn between a varying measure of gratitude for the work the did but resentful of my need for their presence, my mind, and/ or my body screaming for quietness and rest. Oh I’d try, I’d really try. By my nature, I really want to like people, and I want them to like me. Did I learn some heart lessons? Absolutely. Did I let as much wash over me as I should? No way. The latter, I’m still learning, but I learnt so much about people management, over the four (or perhaps more) years I needed increasing levels of support.
I met so many people this way, whether I wanted to or not. Oftentimes, I made firm friends with people, at least for the time I needed them, popping in and out of my life, A sizeable majority would start off great, but eventually get too comy and familiar, nearly forgetting their professional role. Until they’d leave their place of work, for somewhere new and I’d start again, Over, and over, and over, and over, and over again.
To be hospitable, welcoming, is a skill I lacked in at first, but I practiced over and over again, not just with the not-so-welcome ones. For all the ones I resisted, responded, reacted to, there were friends aplenty… each a gift from God. On the squishy sofa sat so many bottoms, others reclined, lounged, relaxed, often with a beverage to hand, and a snack or three. My safe haven became theirs. A place of prayer, bringing their needs, others needs, and my own before our Heavenly Father. These are precious memories.
Rarer times still, I played host, an unfamiliar role at best. Obsessing over the menu, the shopping, the cooking… disorganised chaos ensued… but I never recall ordering takeaway due to inedible food. Occasionally the food would be very late, a ‘simple’ menu anything but. Daring something to go wrong, but willing everything to be unreasonably perfect. Name after name of people with which I once shared my life but now lost touch, life having taken over. Minutes and hours of time spent with people eating, talking, laughing, sharing, my favourite ways to spend my time, to value, appreciate, love people. The very aims of good hospitality… It really is priceless and value-full. Time I’ll never get back that could not have been better spent.
In recent days, I’ve been dealing with a ‘pain flare’, where pain is much more severe and longer lasting than it’s usual bubble-in-the-background level. This, not the bank holiday is the reason for the lateness of this post. However, the following event was the brightest spot in my misery last week!
An Act of Remembrance…
Last Thursday afternoon was our monthly Holy Communion Service, held in the afternoon rather than the usual late morning time-slot. Coinciding with Holy Week, the annual remembrance of the final week of Jesus’ life, from Palm Sunday onwards.’Maundy Thursday’ is the annual day when Christians reflect on Jesus final meal with his disciples. ‘The Last Supper’, as this meal is commonly known, is when Jesus reveals to His disciples the real purpose of his life. Far from being a Warrior King who intended to end the Roman Occupation once and for all, at Easter, we remember that, according to the Will of His Father, Jesus gave Himself that we might be set free from sin and reconciled to a relationship with Father, Son and Holy Spirit.
Usually our monthly service has 4 or 5 of us in attendance. With Easter so close, I tried extra hard to let people know what we doing and why, and prayed for God to work in hearts, before, during and after the service. I’m not easily surprised, but the decent sized sitting room was packed with 7 residents at various stages of faith, relatives, a couple of members of the congregation, as well as the priest (vicar) herself. A mismatched community, all worshiping together makes my heart sing, and no doubt God’s heart too. I loved having to ask people to move up, to make room for someone else’s [wheel]chair!
I’m not sure how many of you reading this will have been to a Maundy Thursday service or meal, but there is often an opportunity to volunteer to have a foot (or feet) washed. This is an act of service, demonstrating Jesus servanthood, because a king, would usually be served, rather than serve others, and this act symbolises the cleansing that Jesus offers us through his saving work on the cross. Three residents, including myself, eagerly agreed to having a foot washed. There was a Bible reading in the form of a drama, focusing on the scene where Jesus washes the feet of his disciples, and a short act of Eucharist or Communion. Those not wishing to partake could opt for a blessing or prayer instead.
Including the Excluded
Those watching on during the foot washing were visibly moved. The power of including those who are often sidelined should not be underestimated. Aside from being more time consuming, (think removing walking boot type shoes/calipers etc.) the vicar/priest freely washed the feet of those very often excluded, or not thought of at all. Each of us were asked to shout or squeal if removing boots or slipping off/on of socks hurt in any way. Loud noise in a communion service isn’t usually welcomed, much less expected. Now nobody flinches should someone start coughing, or should somebody’s foot hammer on the footrest from spasms.
Doing as Jesus did, and does…
I’m not sure that the vicar herself realised the significance of what she was doing until after the service was over. Keen not to let the moment slip by, I went over to chat, and explained what I was thinking. Jesus went out of his way to spend time with those left out and marginalised, and He too would have washed our feet. It was humbling to be included and so cared for, when many times I’ve felt excluded. Members of the congregation now accompany the vicar (priest) each month. By creating a worshipping, inclusive community, this church is helping to change society in myriad small acts which do not go unnoticed by Jesus himself, and God the Father.
I’m praying that those in attendance will continue to think about what they saw and heard that day. and especially than each may have a personal encounter with the Saviour who willing gave Himself, body and blood to reconcile them to himself. The vicar washed our feet, but Jesus cleanses our souls!
Unbelievably, it’s 9 months since a Garden Party was held to mark the official opening of the new front garden in the grounds of the big old house I, and my housemates call ‘home’. A monumental effort between local businesses, hundreds of volunteers, Beechwood Residents, and staff, it’s continued to be tended by all the […]
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!
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.
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.
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.
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.
Last Friday, the 15th July, was a special day in the lives of the staff, volunteers and residents at the Nursing home where I now live. 2 years of hard work from a committee, local businesses, National Citizens Service (16 yr olds who volunteer) and many others who I’ll never meet, had been leading up to this day…
The (Front) Garden Reopening
Most of my housemates and I made a special effort to dress up… wearing out the staff who assist us! The volunteers were kitted out in T-shirts bearing the name of the charity who has overall responsibility for the home, and extra staff volunteered. There were even distinguished guests: a mayor and mayoress (very lovely, kind-hearted people) and a representative of Her Majesty The Queen, a Lord Lieutenant (who to my surprise was a female) not surprisingly accompanied by a small entourage, and two local MP’s. Not forgetting the children’s choir from a local junior school, and a samba band!
Unfortunately, the sunshine didn’t really appear until mid-afternoon. Just in time, thankfully, for the, re-scheduled speeches from most of the distinguished guests, the garden committee and the home’s manager.
I’d been unable to resist my natural role, that of a social butterfly, despite fearing the after affects. I swallowed my fear with a silent prayer and carefully maneuvered through the throng, introducing myself rather cheekily, as the youngest resident. This feigned confidence helped me to continue as I’d started despite tiring fast… Making enough of an impression to be mentioned in dispatches by one of the local MPs… He explained the difference the new space would make to someone like me with friends who live some distance away. Any visits need to be made the most of, to keep friendships strong and vibrant.
Given the late appearance of Sumner, it’s been very hot with more than some humidity in the home. Whenever I could manage some time outside the home the new space really helped, especially since two good friends made seperate visits this week. We’d somewhere to go that I could eaisly navigate and chill out in while topping up our vitamin D and catching up on each other’s news.
Healthwise, this has been the best week since I don’t know when… no doubt due to the weather and great company. Not forgetting, of course other outings to a local church with my key worker, lunch out with a different member of staff and a lunch out with my parents.
Of course, I’ve written this post while in the garden, but this time sat under the shelter of the gazebo, watching the weather turn sunny from light rain, and back to cool gray skies. I’ll leave you with some of my photos of the view. Until next time…
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.:
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….
Becoming an Auntie for the first time
A close relative’s big birthday
Going to see Boyce Avenue (a band who first found fame on YouTube coverong
Going to indie food fest
Going to a theatre show (yet to decide on what, where and when)
Going to the seaside I miss the sea
Visiting Susan with Debs and a sidekick
Listening to Daily Audio Bible Every Day
Keeping a gratitude journal (find a regular time to do this every day. Maybe 6pm?)
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?
Reading a book a month on a completely new topic I know nothing about.
Going to a different church from mine every 6 months
Streamlining my spending (not sure yet what this looks like
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.
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.