The Never Ending Skin Problems.

 

Jan Toorop

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

Today there is still dense cloud cover and it is very cool, in fact it is quite cold definitely October weather not summer weather appropriate for July.

We have had to start a new routine which will last for five days; Richie apparently has some bacteria which is resistant to antibiotics.

So we have to use a special lotion for hair and body which has to stay on for 3 minutes before showering off.

After the shower we both have to have some cream put into our nostrils, and Richie has to take antibiotics specifically for these bacteria as well as apply cream.

This helps explain why Richie’s skin kept getting one after the other of this horrible reaction, it damages the skin on his hands and feet.

No wonder that it kept coming back; Richie has had this recurring problem for the last four years, but never so often as this year.

When it starts affecting his hands everything Richie does is painful and seeing as he has to look after me, it means constant use of his hands.

Hoisting me out of bed, removing clothes showering me and drying, manicures and pedicures plus plucking my facial hair.

As well as constantly having to adjust my position both in the shower chair and in bed.

Not pleasant sight having to witness Richie's discomfort when he has to carry out these tasks, which have to be done day and night.

The lotion for hair and body is not the nicest fragrance but that is a minor inconvenience compared to the pain and discomfort Richie has had to put up with.

We are both hopeful that this course of treatment will finally be the solution for Richie seemingly never ending skin problems; it would be excellent if that were the case.

Enjoy This Unique Day Now.

The Tethered Storm.

Edgar Ende.

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

It is a classic Amsterdam Saturday, no sunshine, no blue skies and thick cloud cover.

All week the sun has been shining and the sky wa

s a lovely blue, which made me feel good seeing it.

I feel very sorry for all the working people who had hoped the good weather would also happen at the weekend.

Monday morning could well be a beautiful day, nice to go to work in sunshine, but it does not compensate for nasty weather at the weekend.

Shame that I can’t see sunshine today, which would take my mind off my pain and discomfort.

Right now my arms are as tight as coiled spring and can only be stretched out with great difficulty.

Every day I am woken up with my arms tightly folded over my chest and to prise them apart I need Richie’s help.

Once my arms are prised apart, Richie can get my arms out from under the duvet.

Richie massages my arms, especially my right arm which is the stiffest and most painful.

Despite the lack of sun, I shall do my best to create sunshine in our apartment and be cheerful and positive, and enjoy this unique day now.

Support And Encouragement From Richie And Friends..

 

Aelbert Cuyp.
http://en.wikipedia.org/wiki/Aelbert_Cuyp

Grey sky today looks like full of the promise of a lot of snow, usually snow melts very quickly here, as we are surrounded by water and close to the sea.

Usually that is, seems this year could be very different as the small snowfall from Saturday is still on the ground today.

Also heard from Sue, a friend in Devon, that Westward Ho! this is right by the sea, always mild and damp, but is all iced up now; wonder if this winter will be very cold.

Here it is November 30 nearly December, how quickly time goes by once it is October.

Have enjoyed the change of the seasons much more this year than in recent years; think this year because I am sitting which I do enjoy so much.

Also think that this year I am more aware of the passing of time and the fact that I am very lucky to still be here, very happy that I am alive despite my many problems.

Been having quite some problems with my arms, hands and fingers, hate it all and who wouldn’t but somehow it makes me more determined to carry on writing.

Intend to carry on being me whatever happens, everything is so painful and clumsy, but what's new.

So I intend to keep going with the love and support of my darling Richie and the support and encouragement of friends which I very much appreciate.

Great to get so much support and from all around the world, it really gives me such a boost.

The support and encouragement helps me tremendously, although I still experience all the pain, discomfort it helps me to know so many friends are thinking of me and wishing me well.

Rumours Of Sunshine.

Assger Jorn.

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


http://en.wikipedia.org/wiki/COBRA_%28avant-garde_movement%29

Yesterday was sunny which was nice for my cousin Katrin’s visit; she has been visiting twice a year since I had to stay in bed in August 2008.

Every time she was here it was cold, grey rainy and cloudy, so yesterday was very pleasant for her for a change.

It was something of a revelation for her, funny to think that there has never been nice weather here on any of her visits, apparently also never on earlier visits to Amsterdam either.

Seems she expects Amsterdam to be grey, cloudy and raining, guess we get a very changeable climate as we are so close to the sea here.

Wonderfully the mosquitoes seem to have stopped earlier this year probably because the summer was so bad.

Last year we were sleeping under our mosquito nets until November but this year we have not needed them since mid august.

Had a lot of pain and discomfort yesterday and last night, which was helped by lots of THC before Katrin’s visit and afterwards too.

Suddenly the temperature got very warm last night, strange for that to happen at night, it was around 20.00 that it became very uncomfortable for me.

Thought that I was having a problem with my catheter, Richie checked and it was working fine, had not slipped out of place or even moved.

Turned out to be then temperature and the fact that I was covered by my duvet, which is quite warm.

What a relief to find it was the outside temperature not my body going mad, great relief, took half a sleeping tablet last night as we were up late watching Match of The Day.

It worked well and I slept after 30 minutes until I woke up coughing early this morning Richie got up and gave me some chamomile throat spray and some THC.

The throat spray took the urge to cough away and the THC helped ease me back to sleep which was good for us all as it was 06.00 when I woke.

It is not such a nice day as yesterday but, it is brighter now so I turned the light out now, and there are rumours of sunshine which is very pleasant.

Yesterday Was A Painful Day.

Jean-Francois Millet


http://en.wikipedia.org/wiki/Jean-Fran%C3%A7ois_Millet


Yesterday I had a lot of pain and discomfort, my arms and hands were unbearably painful and my hands kept clenching up into fists.

They were difficult to straighten out but Richie managed to get my fingers to relax and straighten by rubbing my fingers and hands gently.

Richie made me some good cakes yesterday; he put in dry cranberries and two sorts of raisins and flaked almonds.

The fifth ingredient was weed; Richie beat the mixture very well and placed paper cup cake cases on a patty baking tin.

I tasted one as soon as they were out of the oven and cool enough for me to eat, it was delicious.

I ate another one in the early evening and two more before it was time to sleep, they really did help me cope with the extra pain and discomfort I had yesterday.

Did not stop my spasms which started to happen as soon as the light was off and I was drifting off to sleep.

It is a nuisance that the moment I try to relax before sleeping, the spasms start, every time they stop I try to relax they happen again.

This happens over and again, the difference last night was that the cake made me very relaxed so I coped with the spasms.

The spasms were also not nearly as strong as they normally are and the cake made me able to pretty much ignore them.

At some point I fell asleep, something woke me before dawn but some THC vapour soon got me back to sleep.

Felt much better for a good nights sleep.

Enjoying The Day Today..

Betty Goodwin.

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

Slept badly last night my first leg spasms prevented me from falling asleep and when they finally stopped happening there was noise from outside which stopped me from drifting off to sleep.

This was thanks to a neighbour across the road who started throwing one item at a time very loudly into the rubbish container every 5 to 10 minutes so I could not sleep and lay awake for hours.

He started at 2 in the morning and went on throwing things away and banging the lid loudly each time on opening and closing for what seemed like 2 hours.

This morning very early at about 7 am he resumed his activities and instead of a nice and peaceful start to the weekend it was really noisy.

He has been doing this for the last two nights, think no one has complained because he is so obviously a confused man, I remember that he always seemed to be walking around very depressed and worried by life.

Hate to think of him being so upset and there not being anyone to support him, guess that holds true for many other vulnerable people.

In the building we live, five of the apartments are sheltered accommodation; the people living there get in theory support to enable them to live independently.

In practise the support they get seems to be minimal and does not seem to include home visits from their support workers.

Think they will all be missing Willes when she moves in 3 weeks time as she has been providing them with real practical support.

She has been there for them for the last 3 years, so her moving out of the area will be quite a blow for them and not only for them, I know that I shall miss her living downstairs too.

Now she has her mobility scooter sure we will see her often especially as this is so much her neighbourhood.

Willes has been the best neighbour I have had here in Amsterdam, something that I have missed since England.

Really hope to be able to sleep tonight undisturbed by my leg spasms and the neighbour across the road.

It has been a sunny day today, warm with an occasional very cool wind and many pretty parakeets visiting our bird feeder and keeping me well entertained.

Despite any discomfort and pain I have enjoyed today, I am glad that THC helps with my pain and lets me relax and enjoy my life.

Remember It Is Business.

Francis Bacon.

http://en.wikipedia.org/wiki/Francis_Bacon_%28painter%29

Its 13.00 already, two huge spasms started the day, felt like I had been pushed violently up and down in the bed.

One second my arms were painful and the next it felt like I had been kicked, big spasms feel like being moved but there is no movement at all.

Tried to regain my equilibrium and get my arms stretched out and do my arm exercises, which all went well.

After my arm exercises, I asked Richie for the leg exercises, also asked if he needed to empty the catheter bag.

When he looked he saw that there was nothing like the quantity he expected, at first it seemed everything was ok, but as soon as he begun to do my leg exercises Richie saw a small leak.

Apparently the catheter was slowly coming out, luckily Richie managed to pop it back in quite quickly, sadly not before the sheet got wet.

So Richie got me out of bed and to the toilet and then under the shower which felt marvellous, it was excellent to get showered earlier today.

Feel very good that everything got sorted out so quickly, once back in bed Richie did the leg massage and exercises and then he set me up with my laptop.

I got an out of office response from Harm, from Welzorg, who should be adjusting my arm supports, the mail informed me that Harm was off on holiday until 8 August.

Have been waiting for him to come round here to adjust the arm support, especially since Michelle, my ARCA advisor called me on June 21.

She called to enquire whether the arm supports had been done or not, when I told her not, she was very surprised and said she thought it had been done during her holiday

Which was at the beginning of June.

She said she would get it sorted right away, from then until now I have not heard from her again nor has any action been taken.

Have just sent my case manager at ARCA a mail expressing my disappointment and sadness that I have been waiting so long, in fact since the end of last year.

Waiting with so much pain and discomfort, for the arm supports to be adjusted so that I can use them and do not have to support my arms and shoulders myself.

Doing that was so very unpleasant, but for a time I actually thought that the painful shoulders and arms was the progression of my MS.

It was a huge relief when Richie made me some temporary arm supports a week ago and I instantly could feel the difference and know that it was lack of support and not my MS getting worse.

What a relief that was, my case manager has just phoned and she and Michelle my mobility aids advisor will be here next week Wednesday, to discuss the situation.

Well after a cloudy and pleasantly cool start to the day, the sun and blue skied are back again its pretty, but hope it does not get any warmer as this is good.

Ok that is if for today will be doing my best to enjoy today and not get too wound up with the shortcomings of burocrats.

Keep reminding myself it is not personal, it is only business, it helps me dealing with them.

As Richie said ´´remember it is business, it´s best to not take it personally, then it won´t hurt you´´

Lights out and going to sleep has never been a favourite with me and since being so crippled notice it has become even less popular.

Lying flat on my back unable to shift to a different position is not nice, the only way I can change position is by operating the hand control on the bed and raising or lowering the top of the bed or the foot end or raise or lower the whole bed.

Apart from that I can not alter my position, mind you I constantly tilt and slip over usually to the right, so Richie has to adjust me at regular intervals.

It’s real difficult trying to sit up to eat or drink and at the same time have to fight against gravity as I am being dragged down to the right.

Several times a day I the bed and Richie will pull the covers away to see how I am lying and then he will correct how I am lying by pulling me up in the bed as I often also slip down in the bed.

As well as pulling me over to the left, each time any adjustments are made my top has to be examined as every movement causes little pleats and folds which will irritate me and can cause red marks on my skin.

Richie has to pull the collar up sometimes the top will get pulled taut and slightly choke me, then he has to pull it under both armpits to check there are no folds/pleats by my shoulderblades.

Finally he will check in the small of my back, he always puts his hand between me and the bed checking for folds, pleats and creases.

Once this is done I can lie comfortably otherwise a tiny fold could have the potential to cause alot of distress.

There is something that has to be constantly adjusted and corrected so that I do not have additional aches and pains.

These are things that we never even considered before but since I am so crippled these are now important issues.

Since our move here our GP does house calls as does my physio who comes by twice a week and the chemist delivers all prescriptions to the flat.

Shopping is not something I that can do anymore although I did bring shopping back once a week when a friend Marianne and I used to go to the market every Tuesday.

Am hoping that once the sore has totally healed and I can sit in the wheelchair I will be able to go to my favourite market, the Ten Cate Markt which is just down the road.

I am looking so forward to getting in the lift and going downstairs and rolling up the road, that will be a glorious day when I go and visit the market and see the market stall holders again.

The sounds and smells will be overwhelming and I will get euphoric and everything, every person every shop every item on sale will be the best and the most beautiful ever.

I used to have this on my twice weekly jaunts to the market so think that after 9 months in bed I will be head over heels in love with everyone and everything I see and encounter.

It has been a long 8 months in some ways but in others it has flown by think this has something to do with my mindset and also the fact that blogging has given me another dimension and a lot of new friends and contacts and communication.

This has kept me interested and connected to the world and has helped me to stay optimistic and keen to seize the moment this moment and enjoy it to the full.


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