everseekinghim: While we do not look at the things which are seen, but at the things which are not seen. For the things which are seen are temporary, but the things which are not seen are eternal. 2 Corinthians 4:18 nkjv Absolutely agree.

Rate this:

The Persistence of Pain

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.

alarmingtrulyhowdisarming: Hi guys. Many of you may not know this but my brother has cerebral palsy which makes him unable to move on his own. He’s 26 years old and he weights around 150 pounds, and he depends on my parents. They’re trying to raise money to buy a van that has a ramp for […]

Rate this:

Give someone a #BagOfLife

I just supported Give someone a #BagOfLife on @ThunderclapIt // @ColostomyAssoc As an Ileostomy bag wearer with a stoma for life and medical complications dispute bags and medical care I can’t imagine how awful using a tin can or bandages must be though reality for many.  Necessity not a luxury. Please, please join me in […]

Rate this:

Gifts

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).

Transport woes part… (I’ve lost count)

Despite being back on track with my writing now, generally I have found it difficult to write this year, unless something particularly grabs me. This is one of those posts. (N.B. I wrote the remainder of this post roughly six weeks ago, but facing Hospital Transport tomorrow, this post is pertinent!).

Old worries revisited

I have many things in common with fellow disabled people regardless of disability type or severity. Difficulties finding, and keeping affordable transport are almost universal. I’ve barely been out of the house recently, either because of myriad problems with my electric wheelchair, difficulties with care or a health related problem.
This morning, however, I had an unavoidable blood test. I have to use transport to get there so I can have the finger-prick test much like a diabetic person would do to check their blood sugar levels rather than a regular blood test. I am often told children have bigger veins than I do.
This morning was different, because instead of the usual transport vehicle it was a taxi contracted to do the same journey on their behalf. Rude, impatient and uncommunicative and on their hands free phone for the majority of the journey, I was apprehensive about being dropped off at the conclusion of the journey. I should say as far as I can tell my wheelchair was tied down properly.

Unexpected Intervention

Not expecting any further help, I slowly pushed my wheelchair towards the dropped kerb. Unexpectedly, someone in the next car addressed the driver, asking if he was on NHS work all day or just the one job. He said ‘just her.’ The driver then said he should really help me get inside so the taxi driver motioned towards me as I inched toward the pavement. I swear my garden snails would beat me. The other driver swiftly said “it’s just we’ve been warned, you know…” Tada, my driver’s attitude transformed. He propelled the chair at speed towards the building and asked civilly where I would like to be, saying thanks as he did so. I think it was for keeping quiet in front of the person who reprimanded him. Job done, he left.
After my blood test, I plucked up the courage to complain. I wouldn’t usually, but I felt I had to this time because I wanted to make sure the same driver wasn’t taking me home. I was concerned others would be at risk if faced with this same driver too, in terms of their emotional well-being if nothing else, or more, if they didn’t get the necessary help either.
Imagine my relief when an ambulance technician I had seen before rocked up. I knew everything would be fine after that.

A timely reminder…

This morning reminded me of an important lesson though. God doesn’t always answer our prayers in the way we expect. I suspect you are wondering how transport and prayer are related? You see, this morning I was in such pain I was almost in tears. I’d prayed God would lessen the pain as I knew I had potholes and speed bumps to endure on my journey, and asked a couple of others to pray too. Being driven by taxi meant being driven straight there rather than all over my side of Leeds to collect others, ensuring a shorter, smoother journey, despite the unpleasantness. Thankfully, on the journey home I’m first to be dropped off. What a relief,  answered prayer, and an important lesson remembered.

An update on the problems, and the possibilities!

New Week, Old Problems

Morning everyone! In my last post, I mentioned some of the negatives that have been plaguing me recently, and some of the positives which counteract these. Specifically, the unreliability of both my health and my wheelchair continue to be constants which interrupt the life I would love to live. Last week, I took delivery of a small electric wheelchair, reconditioned and fitted to me. At first, all was well. Though not nearly as supportive as my aching body needs, it was at least working, and getting me round my flat, to the doctors surgery or church, and even a trip to my nearest city to meet up with  a close friend and her small boy. The peace, and freedom, has been all too short. Noisy wheels are back. I was assured that it was probably just the plastic from the wheelchair and the rubber tyres colliding in squeaks, but to contact those with a responsibility to fix it should it get worse. That’s what I will have to do later this morning, at the risk of sounding like a moaning minnie, as the wheels don’t actually feel very safe, besides being noisy. They are, at least still working for now, which is more than can be said for my previous chair. It has now been collected, thankfully, so there is one less set of wheels to negotiate round when I want to get from one room to another. Even this is an improvement on recent weeks, so it;s not all bad! Hoping the problems have a simpler solution, with it being a simpler wheelchair!

Accomplishments (at last!)

My health has continued to interrupt my writing because I have continued to need to hone my sleeping skills! I am however having more ideas for posts to write and being able to do a little more without falling asleep, so though it is slow, there is definitely progress! I’ve managed to complete a few small projects, including the first chapter of a memoir and the query letter, which I emailed off within the right side of the deadline with a few hours to spare (go me!) The hard work paid off when a friend I asked for feedback really liked it, despite a few errors. Thanks, Caroline for your input. If further chapters ever see the light of day, I’ll definitely be sending them your way! I read it to a carer as well while she cleaned, who also really liked it, even though they have completely opposite background and personality to me… I mention these things, because I see it as a really good sign that the same material has been received positively by completely different people. Just awaiting the feedback now, but there is a long wait of just under two months, so I’m trying to forget about it!

I needed quite a few days to recover from writing the chapter, including a few more than expected. I have no idea what is continuing to exhaust me, and don’t know where to start trying to find out. Despite this, I have managed to lead a meeting of a women’s group I am part of, where I talked about the last few months, and the ways I attempt to maintain joy and a prayer life, with a lot of enabling from my Heavenly Father. Just getting the talk written was last minute battle, as I couldn’t stop falling asleep in front of the laptop! However, I succeeded in the end, thanks to the faithful prayers of some close friends as well, a couple of whom were also at the meeting. It’s always encouraging for me to be able to use the things I have been through to encourage others, and explore ways we can find joy in our pain and reach others in the midst of it. I will post my talk soon once I have edited it. It’s still full of the typos I didn’t have time to edit before it was time for the group, but should be next Monday’s post!

I’ve continued to host WOWChurch services on a Sunday too. I think I’ve done three now, and despite posting the wrong link to the teaching slot, my confidence is growing. I chose to look at joy the first week, as it also tied in with trying to prepare for giving my testimony, Spiritual Gifts (on which a post is forthcoming!) and last night’s topic, prayer. In thinking about prayer, we also used what we learned to pray for Christians still in parts of Iraq, and the larger contingent forced to flee. I have seen some news articles focussing on the particular troubles for Iraqi Christians, but not many. If you would like to know more, see this recent feature from The Daily Telegraph. If you do the praying thing, please do pray for Christians in Iraq at this time. If you would like to know more about WOWChurch, you can find contact details for Dave Roberts, as well as short podcasts at www.davegroberts.podbean.com

What else does this week hold?

This week I have a meeting to try and reinstate funding for warm-water based physiotherapy, commonly known as hydrotherapy. I am SO looking forward to that beginning again, albeit with help from a different agency than the ones who accompanied me before. This week sees an ending too. I hope I’ll have my final appointment for anti-coagulant therapy to fix a blood clot I got in my leg in hospital from inactivity due to the seriousness of my surgery, It will be great to be free of such a major tablet, and have one less batch of appointments to think about. I am hoping though, that my transport is more successful than last time! A transport-related post should appear (as if by magic!) on Wednesday. I had thought I knew what I was posting on Friday, but I have forgotten what that is, so hoping I remember soon! I have a fairly boring but productive week ahead. This means unless I need to sleep it all off (which is likely) I should have more time to write! (Hurray!!)

In recent weeks, I….

Hi everyone, here I go with my latest attempt to kickstart my blog after some months of absence. Finally, finally, I feel ready to start writing regularl
y again. Hopefully, I’ll manage to post three times a week. For now, lets revisit the last few weeks in my world! In the past few weeks, I:

Have been concentrating on all the basics.

For me, this has meant more than just getting to the end of each day in one piece. Just getting from one hour to the next has often been a challenge, either because of a much disrupted sleep the previous night from insomnia, pain, (be it joint, stomach, or back) or due to my my highly functioning stoma, meaning I am up to empty it several times a night, despite using an appliance with one of the largest available.

If I settle down for a nap the following morning after a bad night, one hour, even two is never enough. And yet, keeping going is not an option either, as I am extra uncoordinated, clumsier, and even less able to think straight than usual. The problem is, after such a long nap, I have no inclination to write.
Additionally, i’ve had never-ending lists of admin, be it phone calls, emails to write, forms to fill… Unfortunately, these things have not been the only difficulties.

Have been confined to one room, for the most part.

After all that busyness, I am exhausted. This has been exacerbated, at least for the last six weeks, because of the unreliability of my electric wheelchair, meaning that even sitting still is hard work, as I need the support which I have from the pressure cushions on my chair, to enable me to sit up comfortably with less effort, less pain, improved balance and posture, and without putting undue stress on my back, which is already incredibly sore most days. Even when my wheelchair has been returned after being away for repair, I’ve been lucky to get the use of it for a full 24 hours without it stalling. As it is, it has stopped altogether, and is awaiting collection for the the fourth time in six weeks. How do I manage without such vital machinery? The truth is, I don’t! For the vast majority of this time, I’ve been confined to one room, usually my bedroom, as I have a profiling bed. This means I can press some buttons to adjust the mattress (in this case, a high-pressure one) to more effectively support my posture, and change my position when I am uncomfortable or in pain, without actually having to move my body. I am incredibly grateful to have access to such equipment, as without this I would be in constant unrelenting agony.
image

Fortunately for me, I have occasionally been able to leave the house in my (ill-fitting, too small and unsupportive) manual wheelchair if a carer, family member or friend has time to help me. This has mainly been for hospital appointments or the food shop. I’ve been unable to attend church in this time, as spending long periods of time in this manual wheelchair has done, and would do much more harm than good. While I am awaiting a permanent fix or replacement for my electric wheelchair, the confinement continues.

Have begun a tailor-made eating plan!

What am I doing with my time now I’m even more restricted than usual? In part, I’ve used the
time to plan food shopping, cooking and eating meticulously. In partnership with my dietician, I am eating much more lean protein to help fill me up without added bulk (or calories) in smaller, more regular meals and snacks. Due to my unique circumstances we’ve had to devise inventive ways of including all necessary vitamins and minerals in my diet, without me having to prepare, cook, eat and attempt to digest lots of fruit and vegetables, for me to struggle to absorb the nutrition anyway due to the shortness of the piece of gut I have left, and reduce the risk of blockages in the stoma, or over-filling of my ostomy bag. What a challenge! (Apologies if you were eating while reading this!) With help from care staff, also I’ve been using a reasonably comprehensive soluble vitamin and mineral tablet on a daily basis, to boost anything I am managing to absorb. As recently as the last few days, on advice from a GI consultant, I’ve recommenced a fluid restriction in combination with a litre of dioralyte daily (rehydration salts and electrolytes). All of this, though effortful is giving me more energy, helping me lose weight by reducing the temptation to snack or comfort eat, and generally feel better about myself. The results are also evident in regular blood tests. A long hard slog rather than a quick fix, but will all hopefully eventually be worth it.

4. The once gaping wound in my abdomen is no more!

Said wound has finally healed, though it needed loads of TLC and took an arduous five months to heal, some 3 months less than my fantastic surgical team expected. My surgeon himself, had some doubt that the wound would ever heal completely, but at a joint medical/surgical appointment last week, it was lovely to be able to tell in person that it had. The doctor said I made the surgeons day. I’ll bet they were glad to have good news for a change, especially given my prognosis and the miracle that I am here at all. As a Christian, I believe that ultimately God has orchestrated this healing, though other factors have undoubtedly helped including keeping the wound free other than the pre-existing infection on the outside of the wound, keeping it clean, and mostly dry, even while washing my hair, no mean feat in itself!

What else have I missed?

I have spent time doing the things I love again: cooking, baking, reading everything from ebooks on my kindle app on my smartphone, blog posts, news articles, catching up with friends family over occasional coffee or meals at home, or even more occasional meals or coffees out when accompanied. I’ve participated in church services online through skype and facebook, and even led my first one last Sunday. A separate blog post on that is to come. In the meantime, contact Dave Roberts to find out how to get involved in VOWchurch if you would live to, or even if you would just like to find out more.
Also on Facebook, I’ve joined a campaign called “Get Your Belly Out”, begun by four amazing yet ordinary girls seeking to raise awareness of Inflammatory Bowel Disease (IBD), raising money for a cure, and building up a loyal, friendly, support community in the process.
image

Lastly, I’ve participated in a webinar (a seminar on the web) or how to write memoir, tips and tricks to use, and what to avoid! This was organised by Writer’s Digest, and run by an agent in America on a weekday lunchtime, broadcast all around the world to aspiring writers in various time zones, 6 pm in the evening, in my case! I managed to stay awake (hurrah!) content rating for virtually the full 90 minute seminar, having learned lotads. I’m now working on the 1500 words to email to the agent, due in a mere 9 days (eeek). On that note, I must scarper!

All about my ‘bestie’!

I first met Laura in secondary school. I don’t know who first started talking to who. I’m going to ask her, because I am curious now! I remember our ‘regi’ class [form group] lined up at the classroom next to hers.

Even though we don’t often talk or text (though we are at the moment) I know we think of and pray for each other, and she’d be on the end of the phone if I needed her and vice-versa..

Whatever I write here will not do her justice, at all, but here are my three favourite qualities in Laura:

Her amazing loyalty is what I think of first… Though I was a Christian at this point, and a baptised one at that I could be quite nasty sometimes and stir things between people… cause trouble basically, though I have no idea why now, and wish I had befriended those I made trouble for instead. Anyway, Laura stood by me through all of that. I moved about 90 minutes drive away from the town I’d lived in when I met her, and Laura is the only one who is close now despite distance between us.

Laura is one of the kindest, most cheerful people I know. She works with disabled kids in a unit attached to our old school. Not the one where we met because that’s no longer there. The new build is called something different but some of the same staff were still there the last time we talked about school and Laura’s work. I have no doubt she is amazing at what she does, with her kind and caring attitude, and a smile on her face. I bet she makes the kids she works with feel good about themselves too. I remember Laura accompanying her brother to their local Church Youth Group, as he couldn’t go without someone with him. She helps her Mum out a lot and I remember her helping with the kids too. I am sure there are loads of other examples, as Laura is always ready and willing to help someone in need, but I don’t know about it because she doesn’t shout about it.

I don’t ever remember Laura not being cheerful and having a smile on her face. I don’t ever remember her feeling down either. She’ll cheer me up when I need it, often with a funny story about something one of the kids did, as her Mum is a child minder. Whatever life throws at her, she seems to just get on with it, which I really admire. I have no doubt there will have been times she’s cried, but I don’t know about them.

Guess I would if I know about those times if I lived nearer. I really wish I did. We don’t see each other often as there are hundreds of miles between us now, and neither of us can drive… yet! Laura is learning, and getting there by the sound of it. Will give her a lot more freedom, though it will be a long time before I ask her to drive to Leeds! I can’t travel on my own these days and it’s still not totally sorted out yet, but I asked (told) her to come down to Leeds with her sister this summer. Really looking forward to seeing them both and catching up. Creating mischief is more like it. More ankle bashing, Laura?!

 

“God made us best friends because our mums couldn’t handle us as sisters” (author unknown)