The Sunshine In My Life.

Salvador Dali.

http://en.wikipedia.org/wiki/Salvador_Dal%C3%AD 

Life is getting extremely difficult for me right now, and that is because my spine is becoming more deformed, so it's difficult for me to sit straight.

Richie does his best to get me sitting well-balanced, however it's not easy to achieve this, usually within minutes it's not good anymore.

This happened again today, Richie spent ages trying to get me sitting in a balanced position.

After about 15 minutes, he got the result he wanted and raised the head of the bed, so I could sit up.

By the time he put my computer table in front of me with the laptop on it, my position had changed and I was slumped to the left.

It is extremely frustrating for both of us and uncomfortable as well as quite painful when I can't maintain my position for more than a few minutes.

When I got the bed supports near the end of February, they worked well and I did not need so many adjustments.

That lasted until May when I started to need Richie’s help more often and this has been becoming more frequent since June.

My problems maintaining my position becomes much worse when the temperature goes beyond 22°.

Today the weather is not a problem for me, the lack of muscles, and my crooked spine are.

This is not easy to cope with, for either Richie nor for me, we do our best to cope, which is all we can do.

Richie is brilliant at devising strategies that help me; he makes life better for me despite all the difficulties of living with a progressive disease like Multiple Sclerosis.

Richie is the sunshine in my life, being here with him makes life good and motivates me to keep making the best of everything and enjoy the moment.

It Felt Like Progress Today.

Joan Erbe.
http://en.wikipedia.org/wiki/Joan_Erbe

 It, has been a good day today I feel like progress has been made which is a pleasant feeling, it makes a nice change.
After a nice shower Richie sat me in my wheelchair at 11 o’clock, ready for my appointment with Ruud from Summit and Maurits, my occupational therapist, from the Amsterdam Rehabilitation Clinic..

We contacted Ruud at 12.45 when there was no sign of him arriving, turned out he had complications at his other appointment and would get here as soon as he could.

Maurits had been here on time at 12, sadly he couldn’t wait for Ruud to arrive, however we discussed several things, which was extremely useful.

Maurits made an appointment with RDT Het Dorp for a gadget that would fit on my wheelchair and support my left arm which would allow arm movement, maybe even let me feed myself.

He also sent an e-mail to Edith, who is standing in for Annelies, to ask her to organise an appointment with Permobile, my wheelchair supplier, to investigate other ways of steering.

Ruud arrived at the same as Mathilde my wonderful physiotherapist who did a few exercises with me and massaged my neck, shoulders while Ruud set up his equipment.

Then Mathilde and Richie assisted Ruud in moulding the seat around me, this took an hour, it felt like it gave me much better support, finally I can sit up properly.

A first for me, I have not been able to do that since I had functioning torso muscles in 2008, I can’t wait for it to be made, it takes 2 to 3 weeks, Ruud will try to get it made in two.

Permanent Damage To My Muscles.

Remedios Varo.
http://en.wikipedia.org/wiki/Remedios_Varo

Today is another beautiful sunny day, so far I have not started to lean to the left yet and have  managed to stay sitting wedged in by a multitude of cushions.

I am not looking forward to the really hot weather when I shall be roasting surrounded by so many cushions.

Looking forward to getting the extra support so that I can sit in a good position in bed, and not be almost lying on my left side.

Horrible feeling, the main problem with being well supported is that moving my arms is much more difficult to do and this makes typing really difficult as I can’t move my elbows.   .

The cushions are pilled up from under my armpits until my ankles, the cushions need to

also keep my knees upright and together, not flopping to either side.

The cushions stop the knees collapsing to both sides, which means that the my feet stay pressed up against the foam block at the end of the bed.

The deterioration in my torso muscles is because I had to stay in bed for so long, in all it was two years.

It took from august 2008 until august 2010 until the huge pressure wound had  completely healed up.

  

For two years I concentrated on the wound healing, I did not realise the extent of the ;permanent damage to my muscles.

A Slow Day.

Andre Breton/Valenine Hugo.


http://nl.wikipedia.org/wiki/Andr%C3%A9_Breton

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

Feeling very slow today after a late night; I woke in discomfort, due to my pelvis being twisted one way and my torso the other way.

My head was leaning to the right at an acute angle which was not comfortable as soon as I woke.

It is amazing how much movement my body still has even though I am totally unable to move my body at all. 

Every morning when I wake, I am curious as to where my body has shifted to in the night; how I wish I could move around again.

I never sat still for very long; I was always getting up and doing something, usually as soon as I had sat.

How I long to be able to move independently again, I would love to move my torso, to bend from my waist.

Be good if I could lift my right arm and touch my head, these days even that is not possible nor can I get the fingers of my right hand up to my mouth.

To do that I would need to hold up my right arm with my left hand which is extremely tiring, only manage doing that for seconds.           

I am aware that my situation has progressed this worries and makes me sad bit will not stop me making the best of everything I can.                                                

Celebrate Sitting Again.

Eva Gonzales.

http://en.wikipedia.org/wiki/Eva_Gonzal%C3%A8s

Here it is the 21 August; it is two years ago that I had to stay in bed because of a huge pressure sore.

It is hard for me to not feel deprived of two years of my life, two years that could have been different.

If only my electric wheelchair had been the right size for me, I told the burocrats but they would not listen.

When I tried to get something done to improve how I was sitting I was told that I should give the chair abit of time.

Well I did and look what happened within two months had the first little pressure sore that healed quickly.

Only for it to happen again three times one after the other, action was still not taken even when in June 2008 the Rehabilitation Clinic told them urgent action was needed.

They finally got moving end of July beginning of August but by then it was too late as the pressure sore was too deep.

And I had to stay in bed 24/7 until end of November 2009 when the wheelchair seat and back had been adapted.

I sat briefly until beginning of January when a new cushion for the shower chair caused friction which removed the skin over the healed up wound.

This took three months to heal; those three months caused a lot of additional damage to my torso muscles.

It has also increased my spinal problems because my muscles are no longer working well enough to counteract.

Now I am very crooked indeed all thanks to the inaction of the burocrats whose job it is to ensure the welfare of handicapped people.

Oh well enough of that today I am going to celebrate sitting again on the second anniversary.

I am looking forward to sitting again at the weekend.

Jeannette's Frosty Pictures From New Zealand.



Woke up from a deep sleep I took a low dosage sleeping pill so that I could sleep without thinking about my bottom and what Ton would say.

When I was awake I was extremely cold, for the first time sleeping under a duvet cover was not enough usually when the weather is good I build up quite a lot of warmth but it seems not last night.

Not surprised as the blue skies and sunshine has made place to dull leaden clouds and torrential rain.

So no wonder that I was so cold when I woke, without the sleeping pill I would have woken up in the middle of the night asking for a blanket.

As soon as I was fully awake I realised that there was no shred of warmth under the cover my whole body felt like ice.

Now I have a fleece blanket over the duvet cover and a shawl around my arms and I feel much better.

Ton Peeks has just been and reassured me that it is not a new wound which would indeed require months of healing.

It is he says where the skin around the old scar was recently damaged and a little piece of that skin has been removed.

Both Ton and Richie think the strapping for the hoist caused this when he pulled it down around my bottom.

This confirmed what Richie thought on Sunday that the action of pulling the strapping under my bottom caused the skin to be pulled off which explains why it was bleeding so profusely.

If the injury had been caused by sitting the day before Richie would have found dried blood in the bed and that was not the case.

Ton says this does happens sometimes and requires even more care; Richie has already adapted how he puts the straps on me.

Now he lifts my right buttock and gently slips the strap under me, this is ok in bed and in the shower chair but there is no such option in the wheelchair.

Hopefully Richie will find a way to achieve the same result, which I am sure he will as he has found a way around every problem

I am so relieved by the news that t is not a new wound but the result of another tiny piece of previously skin being removed.

Healing has already happened but it is not totally healed over there remains a two millimetre gap, the size of a small nick in the skin.

Ton even reckoned that I could sit today but I told him that I would rather wait until it has totally healed.

Ton approved that and said he though that it will be healed by the weekend and I could sit then.

What a huge relief this is for all of us even the dogs who had noticed the atmosphere being different since Sunday.

Yippee!!! I will be sitting this weekend and I do not have to be back in bed for months, hated the idea that I would be in bed on the 21 the 2nd year since I first had to stay in bed.

That was a terrible thought glad it is not a reality, glad it won’t be too long before I sit again, glad Tom approves that I wait until it is totally healed over.

I would rather wait a few days until it is totally healed, as I do not want there to be any reason for anything else to happen.

I remember 2008 when I got problem three or four times and each time it healed quickly and I sat again, without any problems.

Only to be told on 21 august that I had to stay in bed, when Ton discovered a new bigger wound.

While the surface of the wound was small the wound was very deep, in total it was ten cms deep.

That took from 21 August 2008 until 7 October 2009, 14 months of lying in bed and seeing and feeling my torso muscles turning into pudding.

There is no way that I want this to happen again, it is reassuring to hear that this latest setback is skin damage of sensitive skin that was damaged by excessive moisture.

Ton thought it was a combination of sweating due to 30+ temperatures for more than two weeks and the catheter leaking.

I am looking forward to sitting again at the weekend.

What A Difference A Day Makes.

Surrealist Art.

(Sadly I can not upload anymore pictures as I have exceeded my quota, shame as I enjoyed looking for them. Afraid I can only recycle now sorry about this)

Yesterday late afternoon early evening was a dark bleak time for me, it had been a sweltering hot day and it was still very sticky and uncomfortable in the evening..

Heat makes my hands stop functioning well, difficult to do anything when I can not unclench my hands or straighten my fingers.

Yesterday was a particularly bad day for me; felt like I had a pair of boxing gloves on, that is how my hands feel in the heat

I got very floppy and I hated having to be adjusted every hour by Richie, it seemed that no sooner than he had done so, but I would again shift back into a very uncomfortable zigzag sitting position which was horribly painful for me.

After spending so long in bed, my torso muscles have ceased to be useful and have gone very pudding like, trying to stay upright in bed is amazingly difficult to achieve.

Had a very low point last evening when I actually started to think that I did not want to live like that for very long, certainly not in so much pain and sitting so corkscrewed, it was horrible.

Could not imagine me living in even more straightened circumstances than I do now, hate being a blob with pudding for muscles dependant on Richie and the prospect of spending so much time in bed.

This is when I realised that I was in a hell of a state about Ton’s visit today, what would he say, would he see that it was caused by sitting.

I was so worked up about it that I took a sleeping pill as I did not want to lie awake thinking about and getting myself worked up.

Glad I took the pill it helped me sleep soundly until 10 am and then it was an hour and a half until Ton’s visit.

This went very quickly, I diverted myself with reading the newspapers until Ton arrived punctually at 11.30.

He put our minds at ease by telling us it was not due to sitting, he thought it was caused by moisture, he advised Richie to put a piece of gauze on it to soak up any moisture and change it daily.

The other thing he said was it had not affected the original pressure sore, it was around it and in his opinion it was nothing more than the equivalent of a small skin scrape.

He also said it was a very minor event and said that he thought it would be healed up by next week, which would be good news indeed.

We were both relieved that it was not sitting that caused it and that I could be sitting again next week.

Had a very good meeting with my case manager, mobility advisor and occupational therapist, phoned the company who will adjust the arm rests.

It will be done next week; Welzorg, the mobility company, will collect it on Wednesday and return it Thursday.

Things look better today and I am feeling cheerful and positive, amazing the difference a day can make.

Life Right Here Right Now.

Shame that I can not remember now all the things I wanted to write about; typically my best thoughts often happen when I can not record them.

Last night of course, as soon as Richie had put my laptop away I had some excellent ideas for my next post.

Was for some reason supremely confident that I would recall these thoughts, but of course as soon as I could write today I realised that I remembered nothing, sadly not even one word.

Blimey doesn’t Sunday happen so very quickly, almost takes me by surprise, just like it already being my birthday on Wednesday this coming week.

Richie was amused when I said that I was looking forward to it, but just needed another two weeks time to be ready for it.

By the look of amusement on his face I must do this every year just before the 17 of March.

I guess it always surprises me by happening quicker than I think, I expect it’ is funny how one moment it is forever January and two seconds later it is March again and my birthday.

This year I shall take it all as it comes, shall wait and see what the day will bring, see if anyone comes round to visit.

This year don’t feel to ring round and organise people to come round, wonder if this feeling of wait and see is because I am still in bed.

Not really something for me to just sit back and take it as it comes, not sure I have ever been able to do that, have always been too pro-active.

Probably that is why this level of handicap is not easy, feeling more and more like the leading character in Kafka’s wonderful book Metamorphosis.

It does feel like a total change, one morning life was totally changed beyond recognition and now all I can do iust lie on my back.


Not sure I can ever come to terms with this, nor would I ever want to, not sure that is ever possible to do or that it is even advisible.

What I can do, I do and that is to stay as positive as possible and in the here and now, every day I tell myself this over and again just like a mantra.

Stay positive and enjoy the moment in the here and now. Now.