There`s one thing you must remember about people with Dementia, they are very good at hiding things, myself included. Yes, it’s been a hectic few weeks and next week is no different as we have four meetings, a memory cafe and Elaine (My Angels) birthday on the 27th and that’s not counting a visit from a very special lady from Bolton who is 83 and done so much for the Alzheimer`s cause in the North west of England.
The last few days I have noticed such a decline in my well being, my memory and my mobility. The nights are just getting worse; there is no letting up in the NIGHT TERRORS dept. I haven’t mentioned having foggy days for a while but where as the “FOG” used to come down in later afternoon it now appears to be there as soon as I wake up. I am struggling to do the most basic things around breakfast and meal times.
Speaking of mealtimes I now have to change my shirt at least once a day as I miss my mouth quite often (I know I know, I’ve heard them all LOL) but none the less embarrassing to say the least. Yes I get the stares and the TUT TUT`S but as anybody who knows me it doesn’t usually bother me, well it hasn’t until now. IS paranoia starting to creep in my illness as I am more aware these days of my surroundings in the way that I seem to know if people are staring, or are they?? It’s very worrying to say the least.
So, now to my mobility, the only way I can seem to describe this is by saying “Sometimes I feel as if I have someone else’s legs on and not mine”
Does that sound so strange to you? It should to me but it doesn’t!! When I am walking, I am sure my legs want to go one way and I want to go another, what I must look like from the back, but thankfully Elaine is always there to hold me and guide me through my walks. There are also times I just want to break into a run, incredible I know but it’s so overwhelming at times I have to hold on tight to whatever or whoever is nearest. It’s as if I want to run away from this awful disease, and keep on running and when I arrive wherever I am going all will be ok, sadly not the case.
Inside my head I feel as if someone is blowing a balloon up and yet my blood pressure is fine, I want to scream and shout
“I AM ONLY 54 YEARS OLD, WHY ME!!!
All these things are happening to me and happening right now with such clarity, and yet I feel foggy and misguided. Is this the confusion as well as the frustration showing itself? If I am told anything these days it has to be in Short bites because anymore than that seems to be too much for me and I get so frustrated and annoyed at not being able to take it all in.
And yet, here I am, typing away, bearing my soul to the world. Admittedly I am not typing as fast as I used to, but still, none the less, I am still here and I am still raising awareness and hopefully helping others what it’s like to suffer from this awful disease, which brings me to my final point.
Yes, I have got Alzheimer`s, and yes, I am getting worse, I don’t think even I could hide from that, but the more I see change (And change is happening) the more I feel driven, the more people say “Things are Changing” the more I want to change, the more people say “Its a lot better than it was twenty years ago” the more I want to make it even better. Both my “Angel “Elaine and I are great believers that everything happens for a reason, and if the reason I have been diagnosed with Alzheimer’s is to (TRY AT THE VERY LEAST) to improve things for people now and for future the generations to come, then so be it!!!.
Yes I may be “TEETERING ON THE EDGE” but I am not ready to fall over just yet!!!
Best wishes, Norrms and family xxxxxxxxxxxxx