RAGE, RAGE ! AGAINST THE MND !!!

SORRY YET MORE MOANS.... WILL GET BACK TO SOME SORT OF BALANCE SOON....

I do so hope...........pray!!!!

So the thoughts/ happenings of today........ as bullet points !!!

• Woke up, knew I had to be at Hx Hosp for 10:15... Knew I simply could not do it. So I phoned and cancelled.                                                                                                     It was a Spirometry test/check at cardiology. They were unbelievingly understanding and yet I feel such guilt at wasting NHS time......... I've now got it on my outpatient notes that I really can only manage afternoon appointments... unless life or death.                              Spirometry will test my breathing capacity.                                                                          BUT as I still talk in long sentences,  I know there is not any change... and if there is, it is very small.                                                                                                               When there is change I will need an overnight breathing apparatus and then will need to consider the op for a feeding tube.. PEG... but that is not for this week!!!...                          I have been helped by having an appointment at 1:00 on Dec27th,,so much better for me. Thankyou.
• Laura came and wheeled me in for a shower.Afterwards, I thought it would be a good time to make another Video... of me getting on my shoes and socks....... Video made.                      And can I publish it here!!!??? Can I heck as like!!                                                          Why did it work other times ?? Heaven only knows.                                                                I have spent HOURS fiddling with settings.. heaven only know who may maybe able access info on my computer!!!                                                                                                                         Will have to re film... sorry Laura.
• The pile of paper on my table is NOT decreasing ! It's full of documents I need to read carefully... and I have been putting this off for so long !!!                                                    I so need to get in control of this, it is driving me MAD. I want to SHOUT !!!! Why WHY cant I get a grip !!! ???
• Then at 4:00, B arrived , my lovely OT. She came with missives re toilet... a shower chair to wheel on to Closomat... No Bidet function then available ( I paid £2500 for this privilege) and or a riser which might work... but then no drying facility from Closomat.... THIS SIMPLY SHOULD NOT BE !!!! I have MND. I don't need all this extra crap !!!

And you know, all I wanted was a calm day, a day when I could paint , in a warm house with no stress. 

It's now 8:40 and so-far today I have had one bowl of cereal, many cigarettes, 5 cups of coffee and two GnTs... Fortunately A has made me some freezer meals.. so Chicken Curry here I come. 

BUT............. Inside I'm screaming. It should not be like this. MND is horrid, but OK I accept it, that's what I've got.. 

but all the rest of the sodding crap... It's not fair.!!

HUG ME, I'VE GOT MND

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