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.

Getting Organised.

Keith Tyson.

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

Today started well, woke almost gently think that is because I am getting used to feeling everything tighten up and become painful as soon as I wake up.

Richie did my leg exercises after I had done my arm exercises, then he set me up with the table and my laptop and he had a quick shower.

I settled down to reading my mail, listening to the radio and thinking about various things I needed to organise.

Did not get as far as writing today’s post, as suddenly I felt that the catheter had moved slightly, so I called Richie.

He popped it back in and hoisted me out of bed and took me through to the shower in the shower chair.

Had an excellent shower and Richie dressed me and sprayed me with Jean Paul Gaultier perfume and put earrings in and a couple of pretty bracelets on my wrist and a sparkly brooch and I was ready.

My session with Mathilde went well, although I noticed that my right arm was much more difficult to lift up to my head.

Richie and I had some lunch after my physiotherapy session and we were all set to go out and enjoy the sunshine when I felt the catheter start to move again.

Decided right away that this was happening to often now and for no good reason, had to accept that this is the moment when I needed to get the supra pubic catheter put in.

                             

Before we went to the bathroom I called our doctor and asked her assistant to get Dagma to call me back after her last appointment.   

Dagma called just after Richie had popped the catheter back in and had got me back into the wheelchair.                              

Asked Dagma to organise an out patients appointment for me as quickly as possible to get the new catheter which I now urgently need.

Cried a lot also while talking to our doctor as I am pretty scared about any surgical intervention.

But it is now obvious that I need to get the supra pubic catheter done so I do not need to worry about my catheter popping out.

Feel worried about the procedure and at the same time relieved that it will happen soon, would rather enjoy life without having to worry about things such as catheters.

Ever The Optimist.

Gertrude Abercrombie.


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

Dreary grey sky again this morning without even a tiny glimmer of sunshine to be seen anywhere after Richie did my leg exercises.

My legs were not too stiff and tense this morning which was good, Richie picks up each leg in turn, he holds my ankle and lower leg and supports my knee.

Then he lifts my leg towards my head as if I were cycling, he does this once with both legs, then he massages both legs from foot to top of thigh.

After that he lifts both legs in turn, then he carefully places legs in a good position and puts feet up against foam bolster at the end of the bed.

This stops my feet from collapsing to the sides which results in my feet pointing down in the wheelchair.

Which also causes problems with footwear; it seems that if my feet are not braced against the bolster, it would increase the time my feet slip off to the side.

Feet hanging or pointing down is not good, the other thing Richie do is to reposition the long cushions I rest my arms on while sleeping.

He squashes them up and use them to keep my knees from flopping to the side which is not good either as it stop my knees being flexible.

I had done most of my arm exercises before Richie did my leg exercises, the only ones I had not done was the one with the handles over the bar over my bed.

Enjoy that exercises as it helps me to stretch out my arms, excellent thing to do not long after waking up.

Especially good to counteract the cramps and the feeling of having a strait jacket around my arms and shoulders.

After the exercises and my calcium/vitamin D tablet I sit up using the beds handset, once I am sat up Richie uses a small long cushion to prop me up on the right.

This stops me slumping too quickly to the right side and it has been very effective, but it does need to be regularly checked and adjusted so it gives me the maximum support that I need

Briefly the sun came out and the thick cloud cover lifted so the blue sky became visible, this did not last for longer than 30 minutes before big clouds drifted by and massed up to form a big grey cloud cover once more.

Hope the sun and the blue skies happen again, for a short time it was so pretty outside makes me hope for more sunshine today.

Ever optimistic.

Great Sitting Again In My Wheelchair.

Hibiscus and Orchids in my bedroom.


Today Richie confirmed that the skin had healed so I wanted to sit immediately in my wheelchair.

Which I did for 40 wonderful minutes; while I did my leg exercises with the Motomed, it was great sitting in the wheelchair.

Much better than desperately trying to sit up in the shower chair, which causes enormous strain to my arms and shoulders and is very painful afterwards.

While I was doing my exercises we talked to our general practitioner, Doctor van Wijngaarden who popped by to see me.

She waved happily at me as she came down the road on her bicycle, and expressed her delight at seeing me out of bed for the first time since 2008..

She was very happy to see me sitting again, as she said she had been very concerned as to whether I would be able to sit again after such a long time lying down.

It was excellent being n the front room, it looks great now Richie has moved the table closer to the kitchen area.

It gives me more room to move, my Motomed is at the window by Marlene’s bed, she likes it too.

Great looking up both the roads and enjoying the new plants Richie bought yesterday on th e window ledges.

Brilliant that my skin has healed again so quick, just like Ton said, sadly I forgot to talk to Ton on Wednesday about the length of the time that I can sit.

Remembered this yesterday afternoon but only asked if I had to build up the sitting time again.

Ton mailed back yes and then must have gone home as I could not get him either by mail or on the phone to ask how long I could start sitting for.

It will be very tempting to go out tomorrow to the market especially if the weather is good but I will build up the time again.

Guess we will play it safe, feel abit disappointed that I can't go to the market this Saturday as I so want to go there as soon as I can.

Richie says that as I sat for 40 minutes with no sign of any problems that I could try double tomorrow or maybe even one hour and thirty minutes

And then if there is no signs of redness or damage gradually increase it so that I should be able to get there by Thursday next week.

I will check with Ton on Wednesday just to make sure, but think that seeing as I had recently built up my sitting time to four hours that this will be possible to achieve by next week.

Feeling very happy today now I have had forty minutes in my electric wheelchair.

THC, Love And Optimism Helps Me Enjoy Today

Ena Joyce (b.1926)
Ena Joyce studied at East Sydney Technical College alongside Margaret Olley, David Strachan and Margaret Cilento. At nineteen, she was the youngest recipient of the NSW Travelling scholarship with the work ‘Seated Nude’, going to London and Paris where she studied under Bernard Meninski. Influenced by Bonnard, Joyce is an intimist and a colourist, known for her domestic interiors, garden scenes and still lifes. These expressions of her private sphere demonstrate Joyce’s technical facility in oil, gouache and pastel. An artist of great versatility, Joyce’s oeuvre also includes landscapes, figure studies and portraits. Winner of the Portia Geach Memorial Prize in 1977, Ena Joyce is represented by the National Gallery of Australia, a number of state and regional galleries, as well as Artbank and other corporate and private collections.


Slept well last night, there was no late night early morning activity by the rubbish containers to disturb our sleep which was wonderful.

Nice to bed able to drift off without constantly being jolted back from sleep that was so frustrating on Friday night.

Every time I was just about to fall asleep anther item would be flung noisily into the rubbish containers chute.

Last night was blissfully peaceful apart from a short outburst of dogs barking which ours just had to respond to; luckily I had no trouble sleeping again afterwards.

Always amazed I sleep well as every waking up is so painful, glad that the THC helps me override this until I wake when I need more THC to cope with being conscious again.

When we woke asked Richie to do my legs exercises and massage right away before his shower so that I could sit up and get off my back.

Having my laptop is another big distraction from pain and hands not doing what I want them to do.

Made a great discovery that suddenly I can use the touch pad this is brilliant especially as it has not worked for be before, good to have both options.

Means one way or another I can navigate round my applications, this has given me a much needed boost.

Going to keep it short today and once I have posted this I intend to relax and enjoy the day with my darling Richie and our two dogs.

THC and love and optimism will help me to enjoy today

Staying Optimistic.

(Sadly I have reached my limit so can not upload any new pictures, these are recycled)

I slept alright last night despite waking frequently throughout the entire night, glad that I got back to sleep each time.

Seemed to also have strange dreams, every time I slept again which was a huge bonus, wished that I could recall my dreams, sadly I cannot.

Know that I was dreaming as I can recall tiny snippets of several dreams, finally pain overrode all else and I could no longer escape back into sleep.

Tried hard tensing and relaxing what I can, the only problem with doing that is that my arms fold tightly and cramp which is not helpful to drifting off.

Having alot off pain today which is more bearable now that I have had lots of THC and also have others things to do.

I am sitting now with my laptop after having done my arm exercises then Richie did my leg massage followed by leg exercises.

After that I took my baclofen and was ready to start the day, already it is hot and sticky, Richie is cleaning the apartment right now, this is accompanied by Marleen barking.

She has a huge distrust of the vacuum cleaner and sees it as her job to growl bark and often attacks the appliance but very half heartedly.

When Richie finishes he will get me hoisted out of bed and into the shower and then I sit in the shower chair to do my leg exercises with the Motomed.

Sitting in the shower chair is not comfortable as it does not give me the support the electric wheelchair gives me.

I can not sit for as long as in the wheelchair, really missing that as it does seem to help me sit better in bed afterwards.

Ton will be here at 11.30 tomorrow morning to look at my bottom and assess the extent of the damage to the skin.

Got mixed feelings about Ton coming around tomorrow, on the one hand glad for his knowledge, advice and support.

But on the other hand wish it were not necessary it has been very pleasant to not have my bottom inspected every week, have enjoyed not having any visits since 3 June from Ton.

Hope that this latest setback will soon be healed and I can sit again, we also discovered that I had a bladder infection which caused spasms.

Will try to stay optimistic which is tough but I shall do my best.

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´´

All Is Well That Ends Well.

Mongolian Art.

Did my arm exercises as soon as I woke up this morning, which was a good thing to do as it took some of the stiffness and tension out of my arms.

Make it easier to move my arms around and use my hands, Richie did my leg exercises and leg massage, which also really helps.

Richie gave me a good shower and had a foot and hand soak which was very pleasant indeed, after that I did my leg exercises with the Motomed.

Have had a relaxing day spent for a change without my laptop in front of me, that is because I wanted to take it easy and watch the football with Richie.

Tried again to phone my auntie Sigrid in Vancouver, Canada but it was engaged just like it has been engaged all week.

Sigrid phoned me last Sunday and when I called her back she was engaged and she was engaged for hours that evening.

Thought nothing of it last Sunday, laughed and thought she was catching up with friends, but when she was constantly engaged all week I started to worry.

Had some worrying thoughts about my darling auntie which I did not like, but because I do not have any other telephone number to call, I was at a loss what to do.

I tried to call my other auntie in Spain at her home address, forgetting that her phone would have been cut off since she went to the Care Home.

Sadly I lost her new telephone number recently otherwise I would have called her to see if she had a neighbour’s telephone in Vancouver.

I asked Richie to find a number that I could call fro help and he found the website and telephone and e-mail address of the North Vancouver Royal Canadian Mounted Police.

I called them just over 30 minutes ago, spoke to a very pleasant woman who listened to my story and took my aunt’s address and my details and phone number.

She promised to call me as soon as someone had been to Sigrid’s apartment, so now I am waiting to hear from them.

Hope they get back to me very soon as I can not concentrate on anything else until I know what the situation is.

Hoping to get a call from a very cross Sigrid demanding to know why I sent the police around her address.

Really hoping for such a call from my favourite auntie, wonderful Sigrid, hope it happens soon.

It did and she was very cross until she let me explain and then all was well, she gave me Auntie Herrad’s phone number and the telephone number of a neighbour she is friendly with.

This neighbour sounds very nice, she visits Sigrid often and brings her food regularly, glad that I have this neighbours telephone number and the reassurance that Sigrid has someone near her who cares.

What a relief to hear my Auntie Sigrid’s voice just now, very reassuring, feel much happier now, all is well that ends well.

Beautiful Sunshine.

Man Ray.

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

Today started grey, overcast and rainy and did not look at all nice, until around 13.30 this afternoon when the clouds drifted away and the sun came out.

It is very pretty now, have the window open which is nice, feel more in touch with the world outside

Mathilde, my physiotherapist came by for our Thursday session, as always she was cheerful and it was a pleasure to see her.

Monday this week was my day off from her and I did double my usual exercises to compensate for the lack of one session with Mathilde.