Month: September 2014

An update on the problems, and the possibilities!

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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….

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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.
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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.
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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!