Barry kindly came with me, to wheelchair centre ,for cushion assessment, last week.
My problem seems to arise from the fact that I have long legs but a short body. The angle on the w.chair had been set to about 110degrees ... ie laid back. But with a lumbar cushion this was helped, but then shortened the length for my body (bum to knees).. so not perfect. So we realised the chair might be better more, upright..., after WD40 application and Barry's wrench, the spindle was moved. I was more upright. But living with it for 24 hrs I realised that there was little flexibility in movement, ie of recline... I need to recline to be able to move my bum to a new position and thus do most to prevent pressure sores, ( essential), I also felt really good in one position but had to have slight tilt to enable this position.... thus transfer to toilet became difficult without much change.....
So......... I had to ring Barry today... don't like doing this as I know he is frequently free in the week , but treasures his weekends with my dear friend, his partner, Maria. So I never contact them at the weekend..... BUT needs must, as I was sooooooooooo uncomfortable. They were both able to pop in prior to ASDA shop, this afternoon.Believe me , I am so grateful. I'm now back to more rested (prior) position.. ie about 110 degrees...... But even this is not perfect..... but much more flexible and relaxing for me.. though head not supported.............
I did have a donation request from MNDA... they recognise that wheelchairs are provided on a council approved list... and not from the best fit chair for each person. MNDA are trying to expand their service... to fit people with MND with the chairs that best fit their body shape and needs....
SO, and I haven't done this begging before..... SO if you wish to contribute to this fund ... ( a wheelchair costs £4000......... ) please do. Just Google MNDA and contact for the wheelchair fund.... maybe even mention me.......... Is that selfish ?????..... I cant decide...
But I do have to try every avenue to make my life comfortable...... Its soooo hard ........ believe me, walk (? ! ) in my wheel chair for a day and just see....... I'll sit in my, ( badly fitting, (again)) rise and recline chair for an hour, and you do some of the tasks I have to cope with........... So a very self-centred sentence, I know , But I'm feeling rather sorry for myself today......
these weepy days happen.
I have sat out side and watched the autumn sunset, it gets to me. It is like a metaphor for my life......... some brightness but diminishing warmth/ life.. should be lovely but just missing the mark.
I'm sad this weekend as Chrissie and family should have been here............. but as I have had a cold they didn't wish to subject baby Oli , 9wks, to my germs.......... Sad but understandable, I guess.
I do hope they visit soon as I have only seen baby Oli twice... first time, day one, for an hour, second time in Oct, but he was soundly asleep in pram........ A new grandchild that I wont see grow up.... I need to make the most of this time to know him............ hope they can come soon............. but if all else fails they are coming for Christmas.... YEY!!!
So somewhat of a difficult and sad day today....... they happen............
HUG ME, I'VE GOT MND
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