Testing Of The Support Cushion.

Cy Twombly.
http://nl.wikipedia.org/wiki/Cy_Twombly

Last night I used the new support cushion for the first time, after Richie reduced the size of the pillow.

Sleeping was difficult, I am well aware that I need to get used to every new bit of equipment, just hadn’t expected to be quite so enveloped by the cushion.

I shall give the support cushion lots of use before I say something about it to Johanneke, my occupational therapist or to Quattron.

Last night was a rotten night for me, lying with the support cushions all around me, which made me feel claustrophobic.

The material covering the large cushion is towelling which is too warm, I discovered that despite being totally surrounded by cushion, I still needed adjusting.

I was hoping to sleep well, especially after the support cushion was brought, sadly this did not happen.

I felt really tired but could not sleep, my arms were too high on the pillow which resulted in strained neck muscles and shoulders.

Plus despite being enveloped by cushion it could not stop my body moving or my pelvis twisting around, I am going to test it out thoroughly before giving my verdict.

Of course I was hoping it would be perfect, which it isn’t right now, but it can be in due course.

    

Dennis Klein from Quattron, Johanneke my occupational therapist, Quattron's support cushion

   

Finally The Cushion Has Arrived..

Marriage.
Jindrich Styrsky.
http://en.wikipedia.org/wiki/Jind%C5%99ich_%C5%A0tyrsk%C3%BD

No e-mail or telephone calls from Johanneke, my occupational therapist or her colleagues despite sending e-mails since Friday.

I have been left flopping over to the left; constantly almost lying on my left side makes my life extremely difficult.

Eating, drinking and typing are difficult hanging to one side; this situation is so difficult without the support cushion.

Without the support of the cushion I can do nothing, not even hold the bag of THC vapour up to my lips.

So sitting in bed writing my blog post will not be possible until I have the cushion, hopefully that will be soon.

I hope the cushion has been reduced in height so that the table will be able to fit over it and can support me during the day when I am sitting.

If not it will be no use to me, I can’t believe that it has take so long, 5 months 7 days since the appointment with Dennis Klein and my OT on 26 January.

They told me I should get it quickly; I was given to believe that in March I would get the cushions.

At 16.00 I got a call from a colleague of  Johanneke’s that she would bring the cushion at 17.45, she did and it’s here, I will try it out when I go to bed.

Put It Out Of My Mind.

 
Ballons, 1970.
Foni Tissens.
http://en.wikipedia.org/wiki/Foni_Tissen
 

Still feel shattered by what should have happened but sadly didn’t happen yesterday, I had been looking forward to 1^st July all week, and finally getting my support cushion.

I could not believe it when I phoned Quattron yesterday to hear that the support cushion had been sent, just not here but to the rehabilitation clinic on the Overtoom on Monday.

This was not the promise made to me by their representative Dennis Klein on 24^th June, he assured me then that the cushion would be adjusted and back with me on 1^st July.

I hope it has been adjusted as otherwise I will have to wait to get it after Dennis is back from his holiday on 25 July.

This process started on 26 January, looks like it maybe 6 months before I get the support cushion.

I hope that I will be pleasantly surprised and my Occupational therapist Johanneke will be back at work next week and will bring me the cushion.

That would be wonderful, almost do not believe that this situation will be successfully completed next week.

Even better if the height of the support cushion has been reduced, I am worried that the adjustment was not communicated just like where the cushion should have been delivered.

For now I will try and put it out of my mind and concentrate on enjoying the weekend by not thinking abut this until next week.

Keeping Hopeful.

Zambezia, Zambezia, 1950,

Wilfredo Lam.

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

Last night we both noticed mosquito’s, for the first time, up until now I have not needed to sleep under my net.

Fully expected to wake up to a hot sunny day, sadly it’s the opposite, a grey, dull, overcast cool day

Guess any day now we will wake to hot, humid weather; I shall enjoy these grey days and take it as it comes.

Yesterday was a trifle upsetting having the support cushions here at last, then noticing that the size was not correct.

This meant I would not be able to sit up and use my table or my laptop, sitting fully supported is the function of the cushions.

It was a strange feeling being totally surrounded by the cushion, instantly felt the support that they provided.

Dennis Klein from Summit has promised that the cushion will be adjusted this Monday; he said they will be back next week Friday.

I hope he is right as I really need the support they offer now, to sit up in bed, keeping hopeful that they will be here when Dennis promised.

Having a cocoon around me is not my idea of fun but sadly I need support now, if the cushions provide that then that is brilliant.

Many Appointments To Get Anything.

Monomakh Hat.
Oleg Korolev.  
http://en.wikipedia.org/wiki/Oleg_A._Korolevz

Well I guess as there is no news from Johanneke, my occupational therapist or Dennis Klein, from the support cushion suppliers Quattron, I will have to wait until next Friday.

Shame there is no flexibility, would have been great to have got the support cushions immediately that the ‘conflict’ between Agis and Quattron was resolved last week.

Funny despite being disappointed so often since 2006, things like this still get to me, when I was diagnosed in 2006, I thought naively that I would receive the help I needed.

Since then time and again the lack of consideration, care and often total disinterest to give help has been amazing.

What gets me is how the budgets for supplying aids to the disabled are strictly guarded, and yet so much money is spent on the peripherals, such as appointments.

Before I can get an appointment with a supplier, I have appointments with occupational therapist and then case manager and consultant.

Next week I have an appointment with Annelies, my local council advisor and Welzorg

to discuss what adjustments I need to the seat.

No problem with that, what I find strange is the appointment will, take place without Ruud from Summit, who knows precisely what adjustments are needed for me to sit well.

       

Hopefully the conclusion is an appointment with Ruud, which will result in adjustments which allow me to sit better in my wheelchair.                      .