Friday, May 14th 2010

A tiring week

In complete contrast to last week I’ve had visitors every day this week, and this coupled with not feeling my best lately has left me rather weak. Not so long ago I went through a phase where I had very little energy or appetite. This week has been a bit like that with eating a bit of a struggle and hard to work up any enthusiasm for. I’ve also started relying on ensure high calorie drinks again as a means of topping up my diet when I feel that I just don’t have the energy to plough through a meal. I’m hoping that it’s just another phase and I’ll regain my appetite along with some much-needed energy before too long.

So what’s been happening this week apart from the physiotherapy training session I’ve already written about? Well, on Tuesday Rachel, my care manager, called round to discuss an MND study day that my local hospice is organising for next month. It’s going to be open to healthcare professionals and care agency workers and will be a day-long event. There will be some workshops as part of the itinerary and these will focus on MND from the patient and carer’s perspectives. It is one of these workshops that my care manager has invited me to participate in. The format that I believe we are going to adopt is that of an interview with Rachel asking me a series of questions in front of an audience. I’m quite interested in taking part in the day’s activities and in a way giving back something as the hospice has been very good to me so far. However I am also conscious of my limitations. Talking these days wears me out quickly and I find myself taking a breath after just about every sentence. I also cannot project my voice very far these days so I think they are looking at providing me with a microphone so that it will be easier for me to talk. The hospice is also going to be providing transport for me and my carers to and from the venue.

Today has been another tiring day with Sue from In Touch spending half the morning with me filling out all the paperwork for the DFG (Disabled Facilities Grant). I thought I had already gone through all this, including the means test, last year. But this apparently is the formal paperwork and also because so much time has elapsed since it was first done they needed to go through all my finances again in case they have changed which would affect how much I would be expected to contribute. It will be interesting to see if the figures they come up with bear any resemblance to those I was given last year. Whilst she was here Sue was filling me in on how things are progressing with the house extension project. It would seem that only two of the three building contractors felt inclined to quote. Fortunately the council are prepared to accept that so once my finances have been reviewed and my contribution calculated and the council have given their approval then In Touch can give the successful tender the go-ahead. Fingers crossed that everything runs smoothly now and that construction work starts soon.

And after a busy week it’s time to rest…

Just a man and his Meerkat after a tiring week! This is what I'm up against - totally at the mercy of my carers 🙂


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One Response to Friday, May 14th 2010

  1. Jason Glover says:

    That’s a great picture

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