Month: June 2016

I have been out and about, acquiring things, buying things, and talking!

Speaking

First a couple of months ago I spoke on living with dementia for 15 minutes (okay I slightly overran!!) at the Berkshire Dementia Action Alliance conference.   Next I spoke at the West Berkshire Neurological Alliance Conference with two other people with disabilities, one with a spinal injury, and the other a carer for his wife living with Parkinson’s disease.  We each spoke about our experiences  Then we were asked questions about our experiences within the NHS system (good and not so good) and we discussed it.

Then I was asked by someone if I would speak at the Royal Berkshire Hospital for their Dementia Awareness Week.   I frantically wrote 6,000 words and a week ago spoke to mainly trainee nurses on what it is like to live with dementia and how very simple things could be done to make things easier.    I was nervous sitting on the train traveling there, fidgeting like an eight year old, more worried that half way through my talk I would need urgently to visit the bathroom!  But once I started speaking it felt okay and I found my voice of what I hoped could help them learn to be more compassionate nurses by understanding what it is like living with this disease and how to make visits to hospital less stressful.

I was so pleased to have done it, and know that my inspiration and support to say the things I need to say came from my friends in my Early Stage Alzheimer’s/Dementia Support Group – thank you so so much guys.  Especially to Chris Mason who gave me the statistics which certainly hits home.

Next:  FIBROMYALGIA 

Goodness what a time I have had recently, pain, pain and yet more pain!  Feet too painful to walk on, body too painful to sleep with, and with the pain comes the exhaustion and weakness.   Anyway, no problem I asked to be referred to the pain clinic and got an early appointment.   Spent a few minutes with the consultant who prescribed me Amytriptaline and Gabapentin.  Now Amytriptaline and me don’t really mix, but he said “whatever you do keep taking it for six weeks”  Six weeks on and I have stopped taking the Amytriptaline – it took me back to before I was taking Rivastigmene for my Alzheimer’s.  Memory blanks, confusion and loss of words when speaking – in fact I was finding it too hard to function normally.    I am waiting to have a Lidocaine infusion so hopefully that will help.

I am hoping that I will get back to normality of being able to be less confused, my fear is that somehow the Amitriptyline has interfered badly with my Rivastigmene and it will be permanent.  Or that somehow I have just progressed that little bit more and my confusion is not going away now that I have stopped it.

I have really come to terms with having dementia now, I am no longer afraid to describe myself as living with it.  But it still feels like living with a slow time bomb, and I am on a speedway packing in as much as I can before it starts to hit me more.

Acquiring things

I have acquired an allotment 😀.  Yes I know what I have just written about my Fibro, but, when I read on the bottom of the letter from the consultant – discussed life limitations I thought sod that for a game of soldiers!    I know exercise is really important and difficult but so is living without boundaries.    This allotment is enormous – supposed to be 5 Poles, but it is half of that again.  Shed in the corner, I have bought a camping stove and kettle, a garden chair and can do bit of gardening, then sit and recover..have a cup of coffee, dig a bit more and sit a bit..well you get the drift.  When I am digging, Mr and Mrs Blackbird are a metre away picking out grubs, we don’t speak to each other but they do give me ‘that look‘ when they want me to turn more soil over.    I am looking forward designing and making my raised beds, but know it will be slow going.

Yesterday I went to a mobility fair.   My newest buy is a mobility scooter!

Obviously not new, I wish!  But this baby is going to give me mobility again now that walking has become something of an issue for me.   With pain and weakness in my arms a stick is no longer helpful.   Can’t wait for it to be delivered so I can get out and about more on it.