Creative thinking for a solution.

 
Roberto Matta.
http://en.wikipedia.org/wiki/Roberto_Matta

Last night I had a very unsettled night and kept waking up many times during the night worrying about the appointment with Milou, the wound nurse today.

Milou was here precisely at 1200 just as we had arranged, she said that the wound looked good but that the surrounding area was damp.

We have no idea what the cause is, Milou could only tell us that she could see that it started to happen mid-September, without the reason being apparent.

Richie has come up with a variety of ideas which he is going to try out and see if any of them provide a solution to the problem of the dampness around the wound.

One of the ideas is to use the extra supports that we have for my torso and place one during the day below my right knee in order to lift my right buttock from the bed.

The idea is to do this during the night so as to alleviate the pressure on the area where the pressure wound is located.

Richie is hoping to be able to come up with a resolution to this problem without having to turn me on to my side during the night, which causes painful shoulders and arms which trigger off spasms.

We are hoping that by trying different ideas we will be able to come up with a solution to the problem of the dampness around the wound.

Once the solution has been found hopefully the wound will be able finally to heal up so that once again I might be able to sit in my wheelchair.

Charting The Progression Of My MS.

 

Roberto Matta.

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

As soon as I woke up I felt the full range of MS sensations, it felt like small electric shocks were happening up and down my body.

While this was happening it also felt like I was on fire, at the same time my arms tightly folded against my torso and my legs were having spasms.

not a pleasant way to wake up but this is what happens just about every day, so while the sensations are still very strange, they have become very familiar.

It is weird feeling these things every day what is even stranger is witnessing the progression of my MS.

Horrible to see how far it has got, sometimes it makes me feel like I'm being squeezed like a tube of toothpaste.

Gradually my body is becoming more paralysed and less able to function.

It is strange to be keeping a log of this happening to me, all I can do is write about how I feel and think about what is happening to me right now.

Positive news.

Roberto Matta                                           .  

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

Last night I slept very well which surprised me as I had been experiencing quite a lot of pain and discomfort as well as extra spasms late last night.

This morning I slept until 09.30 then I woke up abruptly because of the pain I was having due to lying badly in bed.

Richie soon corrected my position t his improved how I was feeling, some THC vapour made me feel much better.

Doing my arm exercises with Richie’s help relieved the tension in my arms and once Richie had done my leg exercises I felt even better.

A shower, clean clothes and a spray of gorgeous Lolita Lempicka  perfume as well as a pair of purple earrings soon lifted my spirits and I was ready to see our friend Anne.

It was a most pleasant visit, she is such a nice woman, always a pleasure to see her and hear her news.

The visit was over much too quickly but while it lasted it was good, yesterday afternoon I had a visit from another lovely woman friend, Cecile.

Always good to see her too, if I could I would see a lot more of both of them and they are both such good friends who it is good to see frequently.

This afternoon I called Dagma, our general practitioner, I needed to ask her some questions.

One of them was whether Mathilde my physiotherapist still needed to wear gloves during our physio sessions.

Dagma said this was no longer necessary, it had only been important to do while we were using the lotion.

She also told me that the antibiotics were having a good effect on Richie, as the results from the last swabs indicated that there were less living bacteria.

Our doctor is very optimistic that the antibiotics are working which means that Richie will soon be free of nasty bacteria.

The news is very good and has given us both a boost which we needed. It is always good to hear positive news.

Dreamy Afternoon.

Head of Spring, 1941/1942.
Pavel Tchelitchew.
http://en.wikipedia.org/wiki/Pavel_Tchelitchew

Mathilde was here on time, for our physiotherapy session, we got started right away, when she lifted my right arm it triggered off an extremely painful spasm.

She massaged my shoulder, as well stretching exercises with my arms; I also inhaled THC which helped me relax and do the rest of the exercises

Now, I am feeling quite dreamy, it looks nice outside today, but having felt Richie and Mathilde’s cold hands I know that it’s freezing outside.

A day when I am happy to stay in and enjoy being warm while seeing people wearing a lot more layers of. clothes than at the beginning of the month when it was mild weather.

Noticed again just now during my Monday appointment with Mathilde, that lifting my right arm is a big effort, impossible to stretch as far as my left arm.

This week touching my nose with my right hand was quite an effort, lifting my arm was almost herculean; it felt good when I had finished.

Really good, so good afterwards, that I am sure that I have been sitting here smiling since Mathilde left.

The sunshine has started to fade away now, as its 16.00, it will be dark by 17.00, and then Richie will make pasta Carbonara for me, which is delicious.

I am looking forward to this evening; I have been sitting in our front room sine 12.00 which has been delightful.  

Strange Experience.

 

1920
Karel Teige.
http://en.wikipedia.org/wiki/Karel_Teige

http://www.youtube.com/watch?v=2gVMuYX5vXY

http://www.youtube.com/watch?v=Iaq8Rp3iDas 

Last night I had a strange experience, I woke up in the middle of the night calling for Richie to put the bed, into the sitting position briefly, and once he lowered it again I slept on right away.

In the morning there was only a vague memory, so had to check it really happened, Richie confirmed, it had really happened.

Apart from having to get to the toilet extremely quickly, yesterday was an uneventful, but also a relaxed day.

Certainly it became a very relaxed day, after my successful bowel movement, can’t believe how important they are and what a huge effect it can have on me.

If I can’t maintain my position in bed, it is usually because I need to go to the toilet; it’s quite amazing how it destabilises me, I wonder if anyone else has this too.

Never encountered this before, this is obviously something to do with my disability getting progressively worse, so very quickly.

Recently I have noticed how I am affected by various things, (cold) wind, temperature changes and bowel movements, spasms and painful tense, cramped arm muscles are some.

These things can’t be controlled, we can only try t o anticipate and respond quickly, often there is no chance.

If I have had an accident, Richie whisks me out bed and gets me in the bathroom, a lovely warm shower, clean clothes, perfume restores my confidence.

Sunny Tuesday.

Three Figures And A Bride
Oscar Mellor.
http://en.wikipedia.org/wiki/Oscar_Mellor

Woke up suddenly, as a tiny involuntary movement triggered off a series of spasms which were strong enough to wake me and keep me awake.

Welzorg came to collect my wheelchair between 8 and 9 this morning; the plan is that they move the base so that the wheelchair is more stable and less likely to tip over.

Amazingly the wheelchair was brought back quickly at 12 noon; I was expecting ir back at the end of the afternoon.

Lovely to see Welzorg working well and actually thinking about clients needs, I wonder if this is linked to them losing their monopoly to supply mobility aids in the Netherlands.

I have a feeling that it gave the company a nasty shock, they are now letting us all see what a good firm they are, so in tune with their clents.

RTD Het Dorp were suppose to send somebody to repair my Home Servant gadget, which has not been working for three weeks.

I hate not being able to adjust my position in bed or switch the light on or the TV, for the last 3 weeks have been totally dependant on Riche to do these things for me.

 No one turned up from RTD Het Dorp; no one phoned so I phoned them and was told the appointment was tomorrow.

I was called by them 2 weeks ago that I had to wait until Tuesday 2 August for them to resolve the problem, hopefully they will be here tomorrow.

Laugher Is Good.

 
 Pierres, 1960.
Jean-Claude Fourneau.

http://en.wikipedia.org/wiki/Jean-Claude_Fourneau

We were up late again last night, neither of us could stop talking and laughing, Richie invariably will tell me a joke every night just as I am trying to swallow my baclofen tablets.

Swallowing tea is not compatible with laughing and nearly always results in me not being able too anything but laugh.

Often laughter can trigger off spasms and it makes my arms as well as hands go rigid, never realised before that laughter could be so painful.

It also upsets Cyril, whenever we laugh or are loud he gets worried, he leaps out of his bed and starts playing with his toys.

Perhaps he wants to distract us, to try to stop our laughter, it usually does the opposite makes us laugh even more.

Poor Cyril needs a cuddle which Richie provides, Cyril lies right against him, pressed up close and growls the whole time.

We have never had a dog like him before, we will probably never know whatever made Cyril so worried, all we can do is give him a good life now.

After 6 months here with us he is more relaxed, happy and seems to like his new life with us and Marleen.

In time he will be more relaxed and really enjoying life, we are happy that we gave Cyril a new life.

Still Optimistic Despite The MS.

 

“Ten Blue Eyes”
New raw art, surrealism, expressionism.
Kazuya Akimoto Art Museum.

Had a pleasant day yesterday even though I was in quite alot of pain, my hands and arms cramping up and locking together woke me up, together with a big spasm.

Funny how I have got used to living with pain, glad it does not stop me being myself and being cheerful and optimistic.

But it does give me a lot to struggle against in order to be able to be myself which is always positive.

Guess it is not too difficult to do because I am very cheerful and optimistic by nature; nothing seems to change that which is brilliant.

Good to see that even this horrible disease that has taken me on such a horrible trip where around every corner there is yet another nasty surprise, has not diminished me.

Being myself is very important for me and now that I am wearing earrings and brooches and necklaces again, I feel even more me.

I enjoy wearing my pretty sparkly things again and getting Richie to spray me with perfume, have to stock up on some new ones soon as I am down to my last two bottles.

The Lolita Lempicka and Jean Paul Gaultier are the ones I still have, my Christian Dior three Poisons perfumes and the Kylie Minogue and Roma by Laura Baggio and the Angel are all finished as is the gorgeous Escada.

I enjoy perfume and my jewellery too much to let MS stop me enjoying them; they are so much part of me now that when I do not wear them it feels very strange.

For the first year in bed I did not wear any jewellery or perfume which contributed to making me quite depressed.

Since end of April this year I have been able to sit intermittently in my wheelchair and started putting on earring and perfume which really helped my mood enormously.

Now I wear them everyday and feel truly me once more and that is good despite the MS.

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.

The Work Will Give Me Some Independance.

Mary Cassatt.

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

Autumn seems to be here already, the weather was briefly sticky and muggy on Saturday and Sunday which made it very difficult to maintain a good sitting position in the wheelchair.

Rain was forecast for 4 days from Saturday, it did not happen it just looked like it might happen any minute.

There was never very much sunshine though it was bright not like today which started with pouring rain.

Marleen hates seeing rain she does not mind being if the park in a downpour but going around the block in drizzle is not acceptable at all.

Think she will be very happy today as Richie put on his waterproofs and took Marleen and Spike to the park first thing despite the rain thrashing down.

Hope he gets back real soon as I think that I need to get to the toilet and shower real quick, just had an enormous spasm that went on for minutes.

A horrible intense spasm which had my legs banging against the bottom of the bed table, luckily Richie has wrapped some foam around the base so my legs are protected.

Tomorrow two men will arrive at 10 am and will be here all day putting sensors up for my new gizmo.

I will be able to do things such as turn on the lights, turn on the TV, the DVD player and open the doors as well as open the front gate.

All can be done with a little control box which is either by my bed or on the wheelchair it will also enable me to make phone calls without any problems.

It will be very good for me just dread the idea of two men being here for two days putting up sensors.

Oh well sure the reality will be a lot better than the prospect of the event and the result will be good for me, it will give me some independance.

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´´

A Good Game.

Leonora Carrington.


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

Slept very well last night until the combination of a spasm, a cough and the noisy winching up and emptying of the rubbish containers outside woke me.

Once I am awake there is little chance of sleeping again, especially these days when my arms have so much tension in them.

They literally snap shut and get folded tightly over my chest, the way I try to counteract this is to little by little attempt to hold on to the trapeze over my head.

Once I can hold on I can stretch my arms and once stretched I can do my arm exercises and get Richie to move my legs and do my leg massage.

Both of these are crucial to my routine and important in keeping my circulation going well, the Motomed is the other important means of exercise.

Without these two things Richie would have to inject my legs daily, I choose to do exercises each day, currently I do at least 30 minutes and often more leg exercises and 10 minutes arm exercise.

Yesterday I went down the road with Richie and the happy dogs, even saw Willes, sadly cannot get into the back yard as the ground has subsided considerably.

I was wearing my colourful outfit from Trinidad for the first time since I could not stand up to put it on; Richie put a couple of photos on Face book.

Was very special having Richie put it on me yesterday, glad that no-one wanted it when I tried to give at away recently.

So very glad that Anne did not want it, she thought it was too hippy for her, funny that as it is a very colourful Trinidadian batik.

Hope to sit out on Willes's patio before she moves on the 31 July, we will both miss her enormously; she is a wonderful woman and an outstanding neighbour.

This neighbourhood will notice her absence especially the children and the vulnerable who won't have their advocate close by anymore.

Hope to be able to get to see her new place before the end of summer and sit out with her on her new patio.

The game last night between Spain v Germany was good with Spain dominating and winning very comfortably.

So this Sunday it will be Spain v The Netherlands it is set to be a good game, hope that The Netherlands wins as life around here would be very sweet if the Dutch team were to win.

Full Of Surprises

Joan Miro.

http://en.wikipedia.org/wiki/Joan_Mir%C3%B3

http://nl.wikipedia.org/wiki/Joan_Mir%C3%B3


This was me at 50 in early December 2001, just before Richie and I got married on 19 December.

Whenever I see this photo it gives me a bittersweet feeling, makes me feel nostalgic for our good times.

I know I can not turn back time, yet still wish I could look more like I did then, know that is not realistic.

Think now that 2005 was so obviously all about MS as I fell so often during that year.

It started in January; I fell on the icy steps outside the Service Desk office, landed heavily on my bottom and walked stiffly in to start work.

The next time was when I had picked up a box of colour cartridges for the photo copier, as I walked out of the room my foot caught boxes stacked badly at the entrance and I fell.

I was sprawled flat on my face on the ground, close to two colleagues who did not help me up so I picked myself and the box up.

Then a month later I was going home and I tripped over the crocked paving stones in the car park.

I recall being very cross that time and even crosser when I noticed that the right knee of my trousers were slightly damaged.

Remember too that I checked my shoes as I did not want my new Misfit shoes to be damaged.

Recall a colleague looking out of her window and asking me what had happened when I was flat on my face.

What a silly question to ask someone who has obviously fallen over, think I said something sarcastic and picked myself off and stomped off fuming to myself.

The month after that, I fell at exactly the same place and after that avoided that part of the car park.

Things went well for a few months and I did not fall again until the beginning of September when I fell over the crooked paving stones outside the security guards office.

I was so cross that I stomped off home waving off offers of cups of coffee and a plaster and dragged myself up the road to catch the bus home.

Even went to the coffee shop for some weed, it was only when I got in that I realised how painful the fall had been.

Richie insisted that he clean up my wounds, they were all superficial but the disinfectant lotion made me wince in pain.

Richie could not believe that I had refused first aid at work; he reckoned that I should have insisted they take me to First Aid at the nearby hospital.

With hindsight I should have got help at work, but recall that I got cross as two colleagues were again, close to where I fell and again they did nothing until I yelled out to them to help me up.

This they eventually did and then one of the Security Guards came out slowly to ask me to step back in the office for a sit sown and a cup of coffee.

By that time all I wanted was out of there and to be home with my darling Richie.

The main cause of my falling I now realise was spasms which I did not notice then, all I felt each time was the fall itself.

Looking back at 2005 and realising again that those five nasty falls were due to MS and nothing to do with the ice or boxes or crocked paving stones.

That’s life full of surprises.

Relearning How To Live.

At the moment I have no internet connection and do not know why not.

Immediately felt totally isolated without the internet and no mail, no connection to Blogger and my blog and worse of all, no connection to all the blogs that I visit.

Amazing what a restart can do, once there was an internet connection I felt better, could relax and write today’s post.

Something Webster said in her comment yesterday about falling and not seeing why, made me think of when I kept falling.

Think now that spasms probably made me fall, a weak spasm could be enough to knock you off balance.

So often when I fell there was a physical reason, there was ice on the steps at work, or there were boxes in the wrong place.

The paving stones were not laid well or the road had just been done or any number of reasons.

I remember falling down twice on more or less the same spot before I broke the cartilage in my right knee on the third occasion.

Each time there was no obvious reason or so it seemed, think now that it was a spasm each time that knocked me off balance.

Falling felt weird, remember the first time I fell when I was leaving work, one minute I was walking and the next I was on the ground.

The next time it happened I was very cross, especially as my favourite black trousers were ever so slightly damaged and my new Misfit’s skateboard shoes were slightly scuffed.

When I fell the third time as I was leaving work and two colleagues saw me fall and did not help, I was livid.

I was so cross I got up and told then what I thought of them and before stalking off to the bus.

Got home and only then did it start to hurt, Richie cleaned and put plasters on my knee and got me a cup of herbal tea and a pure weed joint.

The day after, Saturday I went to the supermarket and noticed that walking hurt and my right knee was moving strangely.

Had the feeling that I could fall at any minute, on the Monday I went to the doctor who thought I had damaged my knee.

She gave me a referral to the x-ray department of the hospital on the Prinsengracht, close to where we lived.

When the x-rays showed that I had broken the cartilage in my knee it was a relief, so was the fact that initial sessions with the physiotherapist seemed to be helping.

Progress was made for the first months, then 6 months later I seemed to get worse, suddenly my balance started to deteriorate.

Also had horrible back pains and thought that perhaps I had a hernia, our doctor could find nothing.

As, he did not like the fact that my right leg muscles looked smaller than the left, he referred me to a neurologist.

The neurologist sent me for an MRI and as a result, the diagnosis of Primary Progressive MS was made.

Four years ago now, four years of relearning how to live as a severely handicapped woman,

There have been some big changes, I still do not like what has happened but am no longer fighting myself.

Living in the moment is the best way to live; it has helped me to enjoy everything that I can and to not waste time with recriminations nor with predicting the future.

The here and now that is the only thing we all have, lets enjoy it right here and right now.