Enjoy Sitting

Oscar Dominguez.

http://en.wikipedia.org/wiki/%C3%93scar_Dom%C3%ADnguez 

Yesterday suddenly it became warm, for the first time this summer, it is has been cool, grey and overcast with a lot of rain, often under storms.

The only warm weather was in April, cool weather started in May, and continued in June, the 21st of June is Midsummer and supposed to be the longest day.

This year it was the most miserable day, the city had a thick cloud cover all day, there was not a glimmer of sunshine and instead of it being the longest day it was a gloomy day and by 18.30 in the evening it was dark.

Not what I call Midsummer and since then it has not improved, it has been a miserable summer, sadly one which suited me very well as I cannot cope with the heat anymore.

During the day yesterday I managed to cope with a fan right next to me, this was good as long as there was also cool breeze coming in the window, as soon as the breeze stopped it became unpleasant.

That was the situation around 23.00 so Richie got our mobile air-conditioning unit and put it in the hall next to the toilet so that the hot air would escape through the ventilator.

Not all does, which means that the hot air gets into the hall as well as the bedroom and because my bed is at the end of the room I don't get full benefit of the cool air.

As the airco cannot reach into the bedroom the best Richie could do was position it in the doorway and leave the fan on next to me so that cool air will be circulated around the room.

Not a perfect system but the best we can do at the moment, it meant I could sleep without any interruptions last night and I've been relaxed today and not feeling any of the ill effects that I felt yesterday.

This afternoon I received confirmation that the appointment for the installation of the air-conditioning was next Tuesday the 31st and I received the confirmation that I will get Seetech on the 7th of August.

At 14.30 I had an appointment with Kees van Roekel, from Welzorg, this was the final evaluation of the bed support system which I got at the end of February, today I received another foam rubber support for my hip.

 This extra support by my hip will stop my hip moving this causes me to slump to the left, as soon as I got it this afternoon it improved my life, Richie has only had to do two small adjustments of my left shoulder since 14.30 when I got the additional support.

That is really good seeing as it's now 20.00, that is 5 1/2 hours of uninterrupted sitting, which is absolutely brilliant this really is the best thing that has happened recently, it has given me back the pleasure of sitting without needing constant help.

It's amazing that such a small piece of foam propping up my hips on either side has enabled me to sit comfortably in one position, this is really brilliant, Kees is an excellent engineer for coming up with this solution at this moment.

This will allow me to enjoy sitting in bed without slumping and needing Richie's help and assistance constantly, I feel like a load has been lifted from my shoulders, well done Kees from Welzorg. 

Remain Optimistic.

Gunther Gerzso

http://en.wikipedia.org/wiki/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.