Keeping In Touch.

 

View to the universe
by Nikos Engonopoulos

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

Today started suddenly with my arms tensing up painfully tight as soon as I woke up, even though I lay extremely quietly, trying to stay relaxed.

Nevertheless my muscles contracted, it felt like I was locked down, I felt totally restricted, I imagine that a straitjacket must feel like that.

It is so difficult for me to keep quiet when I get woken so painfully, I try desperately every morning to relax, but end up yowling, like Coldplay, except i am not a stadium band.

Hoping each day that I might be able to relax my muscles and avoid the painful muscle contraction, so far this is just wishful thinking.

Each morning I of course don’t succeed in my ambition and instead of being able to relax; my whole body gets totally tensed up.

It takes minutes each morning before the muscles stop contracting and the intense pain starts to fade.

As soon as it did, I felt better, felt even better after kissing Richie, that’s the better way to start the day, with a kiss not a shriek of pain.

After that the day got progressively better, in the afternoon I enjoyed a Skype session with Cari, a dear friend in Wales, she used to live here until 1994, I still miss her, nice to talk with her.

So glad we have kept in touch, I lost all my childhood friends when we left Trinidad, so know how important friends are, since then, l like to keep in touch with my friends.

Life is Moving Along Again.

In an hour’s time they will all be here, I believe there will be my advisor Michelle,
and Harm from Welzorg and Elwin from Summit and Ludwine, the ergo therapist and her colleague Jenny, both from the RCA.

When they get here I will be placed in the chair and Elwin will check that the adaptation is giving me the support that I need.

When Elwin has made all the adjustments needed then Ludwine will check that I am indeed sitting correctly.

At this point Jenny will get me lifted lightly off the chair so that the pressure gauge cushion can be placed under me so that Jenny can check that the pressure is well distributed.

Once that has been completed I will be able to test out the wheelchair and adaptation, and after two weeks Elwin will make an appointment for an evaluation.

Where he will no doubt check whether he has to adjust or fine tune anything to give me better support.

Of course if I need help before the evaluation appointment I am sure that I will be able to get assistance should I need it.

Well it went very well, I was placed in Summit’s chair to test the adapted seat and it felt good, felt like I was sitting well supported in a comfy armchair.

Elwin checked whether I was well supported and Ludwine double checked to see if my pelvis was in the right position.

Then I was put back into bed so Elwin could adjust the left arm rest so my left leg had a touch more room.

Once that was done Jenny arrived and placed her pressure gauging cushion on the seat and Richie placed me on it, at first the laptop showed too much pressure on the right side where the wound had been.

Then Ludwine and Jenny showed Richie how to carefully adjust my pelvis so that I was sitting better, this instantly removed the red pressure from the screen.

Richie saw very clearly how I need to sit and is confident he will be able to put me in that position.

It was a tiring experience especially with so many people here, tiring and busy but so worthwhile.

A good friend Skyped me just as I was put back into bed, it was very nice to talk to Lucy and tell her what had just happened.

Feeling kind of tired now and keen to get out of bed and have a shower and then eat dinner.

A pleasant feeling knowing that tomorrow the chair will be here and I can start to sit up for an hour a day.

Hope that by next week I can start to sit for two hours, life has become really very exciting now.

Summer Saturday in August.

Being patient has never been my thing so finding me so handicapped so quickly and unable to do anything for myself is endlessly horrible.

Despite how horrible it is I have to do my very best to live with it and make the best of my life now.

And I believe that I do that

Being in bed for a year (on 21 August) has meant being very patient, so very patient, like I never thought I could be.

All the time that I am aware that I am having to and am being super patient I am also aware that my impatience is bubbling inside me like a volcano.

Somehow both things happen at the same time, my impatience rages but I remain calm, do not know how or why it happens but it does.

Every now and then if there is any pressure built up I have a good cry and of course I still have a shout out when I need to let off steam.

It is very strange to feel so patient when I am anything but; it is difficult to do anything else, have no other options.

Hate being so trapped, in this immobile body which I can not move, like yesterday really needed to move around and sort out a few things.

Not much really, just need to sort out post and some admin but I can’t get the folders and look through paperwork as my hands can’t turn pages or pick up pieces of paper or shuffle through paper.

This is very frustrating as it means that I can’t do even this on my own, it always got me agitated, as I hate paperwork and burocracy.

One thing I noticed right away is that as a handicapped person you get lots of burocratic mail it is like a whole industry on its own.

It is practically a full time admin job dealing with all the letters from local burocrats and now because I need a lot of help to do this it gets me quite upset.

It makes me so aware of being stuck here in bed with only my torso, still feeling and still being able to pull myself up using the grip suspended over my bed.

With that I can pull my shoulders off the mattress, I am doing my best to get my stomach muscles to cooperate so I can attempt to strengthen my back muscles which I will need to sit up properly again.

A year in bed has been bloody difficult at times, luckily for me Richie has made it good, he has looked after me so wonderfully well.

Friends visit and phone and Skype and email and blog contact and conversation has really helped me to cope with it.

I am hoping that things can and will improve; it is noticeable that I have built up my arm muscles by doing 30 minutes arm exercises every morning.

My arms had got shockingly thin and the muscles were pretty slack this time last year from 5 months of using the electric wheelchair.

Quite shocked me last August when I noticed, with the help of my physical therapist I put together a set of around 15 different sets of arm exercises and do three sets of each which takes 30 minutes.

Really pleased that my arms look and feel and operate as arms again, really quite proud of that, it feels good to have a success.

Yesterday after I had posted I visited other blogs I follow and one was Mort’s@Caring and Sharing, went there to find out how he is doing after his recent visit to the hospital.

http://mortonlake-caring-and-sharing.blogspot.com/


I read Mort’s account of his hospital visit and I also read that Mort was urging people to visit Janes’s blog@ A Journey of Another Kind…..Jane’s Journey -The Final Leg

http://a-journey-of-another-kind.blogspot.com/2009/08/janes-journey-final-leg.html


Please visit Jane’s blog; she needs support right now as she assimilates the result of her bone scan.

Also visited Judi’s blog@Life as a Hospice Patient

http://judi-lifeasahospicepatient.blogspot.com/


Judi is having her Memorial party this Monday, hope she has a good time and enjoys seeing her friends and colleagues.

I shall be there in my thoughts.

I also visited Diane’s blog@A Stellar Life.


http://dj-astellarlife.blogspot.com/2009/08/losing-touch-while-ms-moves-on.html


Read about Diane coming to terms with loss of feeling in her fingers, it is something so weird when that happens.

Diane is right things that you know were and are soft now feel like sand paper, touching and being touched is no longer as pleasurable as it was.

Sometimes Richie touches me and I mostly feel nothing or it feels like being touched by sandpaper.

Then I visited Rain’s blog@A Walk in the Woods

http://ocean-sunsets.blogspot.com/2009/08/why-i-hate-quebec-people.html


Here I read about the mental handicap called racism.

Incredibly Rain was refused medical attention because she is not a born French speaker.

Still can’t quite believe that people can be so inhuman towards each other.

Went to visit Steve and BR@The Wheel of Fortuna

http://spinfortunaswheel.blogspot.com/2009/08/welcome-hope-margaret.html


And read about a new baby called Hope Margaret a beautiful little baby with two very happy uncles Steve and BR.

A nice story and a nice photo on Stephany’s blog@soulful sepulcher


http://bipolarsoupkitchen-stephany.blogspot.com/2009/08/summer-plum-pie.html


Of a gorgeous Summer Plum Pie yummy really wished we were neighbours as nothing could have been nicer at that moment, than popping round for a chat and a piece of pie.

Richie has promised to look out for plums while he is on the market just now.

Seems we will be watching the first football game this evening at 6 pm how very exciting, hope that a quick shower can be fitted in before hand.

Then we can enjoy the evening together which is a pleasant prospect.

Despite the forecast of a rainy weekend so far no rain has happened, but it was only a mere 25 degrees at midday instead of the 30 degrees it has been at for the last few muggy and humid weeks.

Think it is getting hotter again, will get Richie to adjust my position in the bed as I seem to be sliding over to the right and down in the bed as I am typing.

Have a good Saturday, I intend to enjoy mine.

Here is a webcam just up the road from where we used to live by the Prinsengracht in the centre of Amsterdam.

http://www.eyelogue.com/donniecam.html


And a slide show of pictures of Amsterdam

http://www.bigbusy.net/

This morning a doctor from the GGGD, the Government Health Council, came round to check that I am really disabled.

I applied for a disabled parking permit so that if anyone in a car visits they can park free of charge.

Handy for friends visiting from out of town and for volunteers and any other visitors.

As I could not get to the office, first because the appointment was too early and the mobility bus always collects an hour beforehand.

Then could not go to the GGGD office or anywhere else since last August and have been trying for a home visit without success.

About six weeks ago spoke to someone from the local District Council who called to see why I had not been down to the GGGD to be vetted.

I explained my situation and said that I understood that the doctor from the GGGD could do a house visit and that would be covered by the WMO, a national law for the care and treatment of the handicapped.

The Councillor had never heard of this and I assured her that this was information was made public by A.N.G.O the Dutch Handicapped Organisation.

I suggested she investigate the possibility and seems that I was correct as a very nice doctor from the GGGD came by this morning, a charming woman in a beautiful outfit.

We shook hands and she asked me a few questions and shook my hand again and departed saying I would be getting my parking permit very quickly indeed.

So excellent news really happy about that hope that means people from out of town will visit more frequently which is a happy prospect indeed.

In 15 minutes my friend Toos will be here to visit me which I am looking forward to very much and have just Skyped with Gareth in Wales.

It is a happy bustling sort of a Friday with the sound of frantic drilling over the other side of the nearby canal as the workers try to finish on time to clock off for the weekend.

Happy Friday everyone!