Saturday, October 03, 2009
Saturday Reflections and Gladys Knight.
Feeling alot more pain since the weather has got colder, have started to wear gloves during the day, as my hands are so cold.
A good friend Anja sent me some gloves without fingers, basically they are a tube which has a slit, for the thumb and they are long, they go half way up my forearm.
They are soft, cuddly angora and stretchy material; I think polyimide, white with black zebra stripes, looks very nice.
Keep my hands warm; which is very nice indeed, as my hands are always cold, the only time they are not cold is when it was well over 25 degrees.
Gloves with fingers are very difficult for me to wear, as it is such a huge struggle to get my fingers to do what you want.
As soon as they have to go into the glove they splay out and the fingers end up sticking out in all directions which make it very difficult to put the gloves on.
It always added at least 10 minutes on our journeys, so we always had to start our preparations earlier if we wanted to get somewhere by a specific time.
Read on Chekoala’s blog about a new drug which is also for people with PPMS, like myself, was very interested to read about this, especially as there are no drugs for PPMS people.
It is very interesting that work has been done researching and testing and now putting this new drug through a trial period.
Be extremely interested to hear if anyone has already heard of this new trial.
Almost feel to volunteer to be a guinea pig, not sure that I would have anything to lose by being a guinea pig as the way it is going I am gradually getting less able to do things with my hands and my arms are getting very stiff and painful.
I am having a horrible time with increased pain and difficulty to sit comfortably in bed; I know that is all down to my muscles becoming weakened by being in bed so very long.
Finding it difficult to notice and feel how bad my hands and arms are becoming, it is not lack of strength, as I have built up quite a lot of muscle in my arms.
Can see the muscles and can feel the strength, but it is not a matter of muscles, it is lack of flexibility and motor functions.
Have more than enough strength yet find moving the mouse to be a huge challenge because I can’t direct it properly so end up clicking on things many times before reaching my target.
Hopefully before doing anything I may regret like deleting my text or reformatting the hard disk or any other unforeseen and unintended action.
Yesterday morning I woke up crying loudly, sobbing in frustrated rage at being so immobilised.
It is not that I forget that I am paralysed, could not forget that, it is just that every now and then I get a huge wave of anguish and pain about my predicament.
Unbelievably frustrating to be lying here totally incapable of doing anything independently can not even pick up a book or read a letter or do anything for myself.
Can’t open an envelope or turn pages, realise now that despite keeping optimistic and enjoying the moment, that underneath I have been and am deeply frustrated and if I dwell on it even briefly I am shocked how much potential there is for depression.
I think keeping in the here and now has saved me from being extremely depressed, but can feel that it is always right there.
The abyss of a deep depression looms large and it involves skill in not plunging right down the chasm between optimism and depression.
It is a balancing act, I do not want to lose my emotions but have to watch out and keep a check on them to stop my emotions becoming too much for me.
In the here and now of this Saturday afternoon, the weather looks bad, lots of wind, thick cloud layer over the city.
Three times brilliant sunshine illuminated the street and the buildings across the road only to vanish once more behind the clouds.
It has made me realise once again how like life the weather is, there are dark times and sunny times.
Nothing remains the same it is all part of a dynamic process and we are part of this, a very essential part.
The sun just shone brightly again and the birds are getting busy collecting as many nuts as possible before the weather changes for the worse.
Whatever the weather I intend to enjoy this unique day with my darling Richie and our sweet dogs.
Hope you have a good day too.