Thursday, June 21, 2012

Remain Optimistic.

Gunther Gerzso

Near the end of February when I first got the new bed support it allowed me to sit well without too much correction.

It worked well however now that I have been in bed again for months my muscles have become weaker.

This started to become noticeable in May when I had been back in bed since 23 February.

At first I did not need too many adjustments and every time I seemed to be able to maintain it for a reasonable time.

In the last month I've needed a lot more adjustments, and now I can no longer maintain my position for long.

Now no sooner has Richie got me into a good position and left the room, then it is necessary to call him back.

Richie has gone out with the dogs to the park, before they left, he made sure I was sitting well.

They hadn't been gone for more than 5 minutes, when my body went into an S shape and  I was also slumping to the left.

I hate this so much, it is demoralising which I don't need, if only willpower would be able to solve the situation, mine could do it, I'm sure.

It's bad enough to be losing the use my hands, and eventually my arms but for my torso muscles to be so weak after four months is worrying.

The pain in my hands and lower arms as well as my shoulders is often unbearable, last thing at night especially.

 Also when I am barely conscious in the morning my hands clench up and my fingernails dig into the palm of both hands.

This is painful that I have no option but to wake, when I try to doze off again any small movements will trigger it off again.

This morning my nose was itching so I moved it and instantly both arms were rigidly pressed to my upper body and both times my nails with digging into my hands.

Trying to relax my hands and arms is not easy; it takes ages and only gives me a partial relaxation of my limbs.

I never thought that losing the use of my hands and arms would be so painful in some ways even more so than my legs.

This constant discomfort plus the uncertainty of not knowing how long it will take for the wound to heal is wearing me down.

Today it is 21 June, Midsummer, the longest day of the year and one of the most miserable looking, overcast days with the rain to come.

The weather forecast is for bad weather this evening, apparently there will be high winds, torrential rain there could even be a hailstorm.

In England as well as here in the Netherlands and Belgium people are advised not to make journeys unless vital.

Not really how I envisaged the start of summer would be at the beginning of the year but then I had planned to be going out a lot this spring.

It is really difficult to do, but I really have to stop myself getting too downhearted and thinking I will never be able to go out again.

As I'm writing this, tears are rolling down my face, my chin and throat are very wet and my glasses have become slightly misty.

Nevertheless I'm going to try to do my best to be is optimistic as I possibly can, to give myself a chance to enjoy what I can.


Judy at Peace Be With You said...

Oh, Herrad, I am so sorry you are suffering. You are one of the most courageous persons I know. I wish I could do more than send you a virtual hug, but here it is. ((Herrad))

awb said...

Sorry for the tears, but I certainly understand. I often think back to when I overlooked the impact this would have on my hands, I was only worried about being able to walk.

Webster said...

It is difficult to read about your miseries without being able to help in any way. So may I suggest something about your hands? How about wrapping your palms with a cotton cloth so your nails won't dig into your skin at night? It may help, it might not, but worth a try, maybe??

So, has your skin tear healed up? Do you sit better in your wheelchair? Why do I ask so many questions? You can tell me to stop -- I won't be offended. You are right, it is best for you to remain optimistic, but I think it is necessary also to rant and vent, just so you don't wallow in it.

Karen said...

I'm sorry to hear that your are in so much pain.

Have your therapists suggested that you try resting hand splints? They help combat hand contractures and finger flexion, and might help ease the fingernails digging into your palms.

Muffie said...

Herrad, I was thinking the same as Karen... They make these 'braces' which you wear at night to prevent contractures. They're so soft on your skin and will keep your hands straight.
I feel so badly when you suffer like this, and I wish I could do something to help.