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Saturday, 21 September 2013

Stop the world, I want to get off!!

If I ever thought that our whirlwind of activity and appointments were going to ease up a bit I was seriously mistaken! The last few weeks have passed by in a blur, not least with three trips to Torbay Hospital in the space of ten days!
Firstly, an update on Sue's hospital bed.... The faulty one was eventually replaced, although not with the new model that we were promised, but at least it is in acceptable condition and Suzie finds it comfortable. It certainly makes our morning and our bedtime routines less physically demanding for me. Suzie sleeps more these days, so it's a great treat for me, when I get the chance, to sit in bed for half an hour in the morning with a strong cup of coffee and some gentle worship songs playing on my iPad, knowing that, when Suzie wakes up, I just have to press a button to sit her up to drink her tea. This is all the more beneficial if we've had a disrupted night, which is more often than not these days due to the disturbing and unpleasant side effects of her latest medication.  
Suzie's new wheelchair is providing her with more postural support than the one we had previously bought ourselves, so we're hoping that she will soon begin to feel some benefit from this. Her posture has been getting worse for some time and she is constantly flopping over to the right, often unable to pull herself back up again. Also, she can't manoeuvre herself in bed to turn over in the night, but she gets a lot of pain if she lies in one position for too long. The Neurologist is hoping that a specialist Neuro-Physio might be available locally to offer some assistance and advice. The hardest part for me is not knowing how best to help her.... How much should I be doing for her, to save her hurting herself, and how much should I be encouraging her do for herself in order to keep her muscles functional for as long as possible? The knowledge that whichever way I get it wrong will adversely affect Suzie in one way or another is soul destroying.
Next week the chaos will really step up a gear as major work gets underway on our bathroom conversion. The end result will be a Wet Room with a wheelchair accessible shower, which will, hopefully, provide me with a fair chance of being able to wash Sue's hair in the shower without soaking myself and the whole bathroom in the process!! It should make all aspects of washing and showering much easier, and safer...... I will report back in due course!!
Thursday 3rd October is Worldwide MSA Awareness Day. To mark the occasion we will be holding a short service of gentle music and prayer, and we will be lighting candles to become part of a 'Worldwide Wave of Light'. The idea is that people right across the world will all light candles at 8pm local time, thus creating a virtual wave of light as it moves from one time zone to the next. To find out more about this global initiative have a look at Sonja's story.
If you live near us and would like to join our gathering please email or ring me and I'll let you have the details. Wherever you are, maybe you could light a candle at 8pm and say a prayer for all those who are affected by the devastation of Multiple System Atrophy.... For people everywhere who suffer from the illness (including my own Suzie); for all those who care for them; for the research that is being done to try to find a cause and a cure for this currently incurable disease; and, not least, for all those whose journey through this illness is now over.
Finally, as we look towards Suzie's birthday on October 4th, I'm delighted to report that our Birthday Fundraising efforts for Rowcroft Hospice have already reached £700. We're both extremely pleased with the response so far, not only because it will help Rowcroft to continue to support other people in the future, but also because of the much needed boost it gives Suzie, knowing that her suffering is at least achieving something worthwhile. Her life has been truly devastated on so many levels and she cries a lot most days. It's heartbreaking to see her so broken and distraught so much of the time. Anything that can put a smile on her face, even if only for a moment, is gratefully welcomed with my sincere and heartfelt thanks. If anyone else would like to show their support in this way please just click on this link below and follow the 'Donate' instructions.
Thank you all so much for your ongoing prayerful support, love and friendship. It's during such difficult times as these that we really value and appreciate what true friendship is all about. Thank you and God bless you. xx