Really noticing that my condition is getting worse, I am losing strength for example the muscles in my back are really weak as I have been lying in bed since 21st August.
My back is getting so weak that I find myself slumping forwards after have sat for a wee while in front of the exercise machine plus finding some simple things more difficult these days.
Some days find typing with my one usable finger is really difficult one minute it is ok and then I can't click on anything say open my mail or just sending a mail or copying and pasting or just clicking on a mail to open and read.
And eating is horribly frustrating as I can't sit up enough and eating in a slumped position is difficult plus holding the fork/spoon or cup is often very difficult.
These days I am also in constant discomfort and pain which really wears me down, try my best to remain positive but sometimes it's not easy.
My big problem is that in my desire to remain positive I do not acknowledge what is happening plus in my desire to not only be positive but in order not to burden others with all the details of the progression of the MS I hardly say anything about what is happening.
Really weird way to behave and does not protect anyone, realise too that have been keeping lots to myself so have not talked about the fact that I know that my condition is deteriorating which means that I won't be alive for as long as I had hoped and that is strange to think about and to contemplate dying sooner than had thought and want.
Have not talked about alot of things cos don't want to focus on them so try to forget about them guess it's the out of sight out of mind policy except that does not work well as it is constantly at the back of my mind and as soon as I start to go to sleep jumps into the front of my mind and keeps me awake.
Better to talk and write and post more and make full use of all means of communication during the day which will allow me to sleep better at night.
My belated New Year's resolution is to be more open with friends and also with myself.
Happy New Year.
Today has been a reasonable day had a few spasms in my legs one big one when the doctor visited and the the chip off my tooth and the bad news from Richie that I can't do the exercise machine everyday as sitting up in the shower chair has caused soreness and irritation in the skin around the wound.
The shower chair has a cut out bit around the bottom and the edge of the cut out bit has stressed the skin around the wound which is causing blisters and soreness and dry rough skin.
Not good so we will have to be really careful now as the wound is still healing and getting smaller though it is still quite big it's now 4cm.
It is taking a long time for the pressure sore to heal but it is now halfway healed so it's crucial that the progress is maintained.
6 comments:
Dear Sweet Herrad,
You should not worry about burdening anybody else. Please do what you need to do for yourself.
Just that you are sharing a bit of your life with so many people who might come across your words here is such a gift.
To know the reality of your life and to hear the love and joy in your voice is a blessing. Thank you.
hi Lisa
thanks for your comment.
will try to be less worried and just be myself.
thanks for your reassuring words they mean alot to me.
love
Herrad
Herrad:
I understand your worry, however, Lisa is correct. I think the more you share of yourself and how you are doing with others will make everyone feel better. People like to be informed. Good or Bad. My friends are a good support system, actually a better one than my family.
Look outside and smile as you said in a previous post - it is a wonderful world out there.
Herrad,
One of my new year's resolutions is to leave more comments on people's blogs. I admit I have been remiss in this one.
I have admired your ability to keep on "keepin' on".
And I echo Lisa's and Lanette's comments. Unburden yourself at will. A burden shared is a burden lessened.
Cheers!
S.
Shower chairs. GRRRR.
We bought this model last September, and even with an additional seat cushion, BR dreads using it. We had an occupational therapist come out for a visit with the hopes of having him recommend something more comfortable. Instead, he put pipe insulation on the arms of the chair.
I wish they rated shower chairs by the number of minutes one can comfortably sit on them. It's not like there is a giant shower chair show room where you get to sit on each and decide which will best suit your situation. You have to pick one based on an underpaid copy writer's description and hope for the best.
And we do wish you all the best as you struggle with the pain.
Here is a link so you can see the type of shower chair I have.
Got it from Amsterdam council.
It made shower time good again, now that has diminished due to my body getting weaker.
It's a great piece of equipment and means Richie can dress me in the chair without rolling me around.
Love,
Herrad
http://www.allegro.hu/arjo%20carendo.pdf
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