Saturday, July 31, 2010
Kirstine's Scotland Photos
Strange how difficult it is to go out, guess it has been ages now, since August 2008 that I have had to stay indoors and I need to take it slowly one day at a time.
Had not expected to feel like that as my first time outside was end of April, and then I went out quickly before I had a chance to think about it and panic.
That is why getting so worried yesterday took me totally by surprise, it happened just before we went outside, when we were leaving the building and got out into shade and a cool wind it occurred.
Think now it was good that my panic happened, as we have talked about it and now I know what to expect I can cope better.
Always good to talk especially about things that are worrying so that I do not worry about worrying which is an awful thing to get stuck in.
Today I am glad my panic happened as I am now more aware, that I am trying to put myself back into life outside of my bed and the bedroom.
Now I am not surprised that April was no problem I was up for it yesterday and charged out saying that I would do my exercises when we returned.
Yesterday we had a visit from Marianne and then Johanneke my occupational therapist and by 16.00 pm I had plenty of time to worry which I did.
Thanks to Richie’s encouragement and support I got round the bock with him and the dogs and got to sit in the sun which lifted me.
I badly needed a boost, going out for the fourth time this summer somehow was more loaded than the other three times.
Guess yesterday was also tinged with frustration that I had not managed to get out more this summer as we had hoped and expected.
The three setbacks have been quite demoralising and being back in bed three times shrunk my world.
So yesterday finally getting out was almost too much for me to cope with glad that with Richie’s love and support I did cope.
Look forward to having many more trips outside this summer
Friday, July 30, 2010
Relaxed day today which was very pleasant, the sun was shining and the sky was blue when Richie opened the curtains this morning.
It has been like that all day which has been very pleasant indeed, it makes a nice change from the thick cloud cover we have had every day for the last couple of weeks.
So today has been good especially as I wanted to go outside and was hoping the weather would cooperate.
It did so we went round the block at 16.00 after my appointment with Johanneke, my occupational therapist, who came by to check whether the arm rest were at the right height.
Glad she came by as my arm rests needed to be adjusted by an important quarter of an inch, the effect was good; suddenly I was sitting even better.
Good job Johanneke came round and checked to see whether the arm rests were adequately adjusted.
When we went outside I could feel the benefits of my arms being well supported no longer need to hold my arms up, which was very tiring and made even a short journey painful.
At first I hated the cool breeze if I had been alone I would have abandoned the idea and come straight back inside.
Luckily Richie would not hear of it and persuaded me to roll up the Jacob van Lennepkade; we paused in the sun at the corner with the Kostverlorenkade.
The sun was gorgeous really enjoyed sitting there for a short time before we proceeded up the Kosterlorenkade to the dog toilet.
Both dogs were extremely excited to be out and about with me again, they could hardly contain themselves.
While Richie took the dogs to their toilet I sat in the sunshine which was so nice for me after so long in bed.
After we came back up the Jacob van Lennepstraat we went back inside, the whole journey took us just over 40 minutes.
When we were about to go out I said it was too late for the market nearly said that I would not bother at all today, then agreed to Richie’s suggestion to go around the block with the dogs.
Outside the combination of shade and wind was not so pleasant for me plus the feeling of almost panicking at being outside was briefly too much for me.
Guess feeling worried and getting panicked are all part of getting used to going out after so long, it is two years ago on 21 August 2008 that Ton Peeks told Richie and I, that I had to stay in bed until the pressure sore had healed up.
Glad that I did go out and glad Richie was there to support and encourage me as I could not have done it without him.
Thursday, July 29, 2010
Gareth's Photos From Wales.
Brilliant sitting in my wheelchair, it was so good being in the front room with Richie and the dogs that we totally forgot to go outside.
Really funny, we do plan to get out to the market tomorrow afternoon; will have to wrap up as the very hot weather we had at the beginning of July for two and a half weeks has gone.
It is 24 degrees today but feels cooler to me, probably because of the wind and lack of sunshine as there is thick cloud cover.
Tuesday was great fun, ordered some gifts to be sent to three friends, two delicious bottles of organic for Gareth and Paul and a pink orchid for James at the Basjoe Coffee Shop.
Gareth called to say he had been surprised by someone coming to his door with a big box for him.
He was delighted to find two bottles of organic wine and our card inside and called right away to say it had made his day.
Think that I will give James a call see if he received the orchid and likes it, hope he does, it certainly was great fun ordering and paying for both.
Like the idea of the orchid sitting in my favourite coffee shop, wish I could but even if I could get there I can not get in as there are two steps up into the shop.
Hope that we get some more balmy days then we can go down and sit on the terrace and enjoy James’s delicious fruit shake and cake.
Will for sure to my best to get there really want to see James and hug him, he is such a lovely man and such a good friend.
Still can not believe that Leo, the other darling is not there at the Basjoe anymore, strange idea.
Just phoned James, it was good to hear how upbeat he was, he had just opened the shop when a man appeared in the coffee shop with a big box for him.
James said he was mystified and then delighted when he opened the box and saw the orchid with our card.
It made his day; he would have called us if he had our telephone number, made our day too knowing that it had cheered James up and given him such a boost.
Glad we could do that for him, but that is what friends are for, glad we made a grey day sunny for our friends.
Wednesday, July 28, 2010
My wheelchair was collected this morning just before 09.00 when a friendly Welzorg employee came by.
Finally the arm rests are being done so that when I go outside I will have good support, shame this was not done much sooner.
My case manager said it was a pity that there had been a logistical problem and my arm rests had not been adapted when they should have been done.
It was good she mentioned this guess it is as close to an apology as I will get from burocrats, so will be happy with that.
Just a shame that she and the two others involved with the adaptations all went on holiday at the beginning of June.
Real shame as the lack of arm support restricted how far I could go from our apartment; it meant that I got no further than our street.
Would have liked to have gone further and I will do so before too much longer, in fact this could happen tomorrow when the wheelchair comes back, hope it is warm and dry like today.
I am confident that I will be sitting as Richie says the skin abrasion has healed now, we are waiting for Ton Peeks to visit and confirm this, he will be here any minute now.
For once not nervous on the contrary very much looking forward to hearing Ton says that the skin is looking good.
Glad that Ton’s prediction last week was correct, am as happy as I would have hated to have to be full time in bed for too much longer, two weeks has been long enough.
Two friends came by for a visit yesterday which was extremely pleasant; it was good to see Anne and Cecile.
Cecile told me some sad news that a friend Leo had died from bone cancer, Richie and I were shocked to hear that beautiful Leo was dead.
Leo and James run our favourite coffee shop the Basjoe on the Kloveniersburgwal 62, on the ground floor overlooking a canal in the oldest part of town, the Nieuwmarkt.
It is a nice relaxing mellow place run by two friendly men, very sad to think that Leo is no longer greeting visitors with his gorgeous smile.
Was always a pleasure to be there and watch them being very kind and helpful to tourists, often spotting quickly when someone needed a sugar boost by advising they drink a cola or a sweet coffee.
The Basjoe has a large group of faithful international visitors who return every time they visit Amsterdam, they have a Face Book page where we left sympathetic messages about Leo.
Leo and James have been helpful to many over the 21 years since the Basjoe opened in 1989.
Both Richie and I were taken there by a mutual friend who lived in the neighbourhood and was quick to spot the new coffee shop
We have visited regularly since then and until 2006, in 2007 only a couple of times, since I have been in bed I have phoned them often.
Phoned yesterday and spoke to James who sounded very down which is not surprising as him and his brother Leo have worked together since 1989.
Remember them clearly in the early days, Leo always welcoming people, always the perfect mine host and James shyly and gently smiling in the background.
Will miss Leo, even though I could not get there anymore I thought of them often, was happy thinking of them making hundreds of visitors lives happier for a visit to the Basjoe.
Ton came by and happily confirmed that the skin was healed and I can sit again tomorrow when my wheelchair is brought back.
That is good news indeed.
Tuesday, July 27, 2010
Every day I repeat and reconfirm that I will not try to predict the future, will not try to work out what is coming next for me.
No point in doing that it would be a waste of my time, notice that I do have to keep that in my mind every day.
Have to remind myself at all times as it is so easy to start thinking what if and to get all worked up about nothing.
Perhaps even get so upset that I get extremely stressed, stress is not good for MS it just exaggerates everything.
Need to reconfirm daily that I will remain my optimistic self, the one that enjoys life despite or sometimes even because of this horrible disease.
I have always been a woman who likes to enjoy, always looking for a reason to have a party, love spending time with friends enjoying ourselves.
It is such a Trini attitude, think that despite having left Trinidad when I was just eleven years old I am still very much a Trinidadian.
Noticed that when I was there in 1997 how much at home I felt, it was a wonderful feeling to have especially as we had left in 1962.
Thirty five years might have gone by but my feelings for the beautiful island were all still there, it was amazing to experience.
To feel all the pieces falling into place and to have confirmation of who I was and where I was from was stunning.
As the customs official said at Piarco Airport when I complained at great length about having to declare an invisible suitcase, it was in Barbados, he said ‘’what took you so long coming home darling’’.
Knowing about my roots helped me to find and to understand myself better, it made sense of everything.
Reconfirming my intentions daily to remain myself and to stay in the here and now and not to get too far ahead of myself is a good thing for me to do.
It is in fact the only way for me to be.
Monday, July 26, 2010
Another cloudy dull looking day, there has not been blue skies and sunshine for several days now, can feel the very noticeable difference as my hands are functioning better.
Can type with both hands which are rather good, great to regain functionality all my fingers are ok except for the little finger of my right hand that is stuck straight out.
Can't do anything to persuade it to do any different guess will just have to live with it today, slept well last night was surprised that I did not wake at 06.00 in the morning.
That is quite a coup e especially as it did not seem that at first I would sleep at all, started thinking about a variety of things when Richie turned the light off.
Glad that my predication was wrong as not only did I fall asleep but I slept until 09.30 this morning when I heard Spike walking around.
Richie says it is pleasant but I am feeling rather cool today, think this calls for a long sleeved top.
Need to ask Marianne if she can make a couple of copies of the fingerless gloves for me as they keep my hands nice and warm.
Hope she can make them for me as it is much pleasanter to have warm hands than ice cold hands.
Woke up in exactly the same amount of pain as yesterday should be used to this by now but every morning it is a shock.
Funny that it’s always a new shock would have thought that by now I would be unshockable but seems not.
Was thinking about the last four years as I drifted off to sleep thinking about how it was in 2006 and how it is now.
It is difficult to watch myself progressively get worse and not be able to do anything to alter the course of MS, this cruel disease.
The only thing I can do is remain myself, which is optimistice and able to enjoy what I can, guess that is the most important thing for me right now.
Sunday, July 25, 2010
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
Saturday, July 24, 2010
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.
Friday, July 23, 2010
Not a bad night slept until early morning, when I woke up suddenly feeling all the pain again, as soon as I was conscious called out to Richie for some THC.
It worked well and I drifted back off to sleep again waking 3 hours later feeling better for the extra sleep.
Immediately felt all my pain again so Richie got me THC after two lots of THC vapour the pain started to recede into the background.
My pain is not gone, just manageable, the THC helps me to relax, these days I no longer get high like I used to, seems the THC just goes to alleviating my pain.
Yesterday there had not been enough time after my shower to do my leg exercises before my physiotherapist got here so Richie put me back to bed.
After the session noticed my legs were going mad, one horrible spasm after the other with hardly a let up, wondered if it was the effects of the hot sticky weather.
Later on Richie hoisted me into the shower chair and placed me in front of the Motomed, strapped my legs in and I did 40 minutes of leg exercises.
Four lots of 10 minutes after that got put back to bed and did not have other leg spasms, which was good.
Had got quite concerned as my spasms were very powerful, banging against the table over my bed and making my laptop move.
Every spasm got me holding onto the laptop scared it would fall off the table, really glad the Motomed stopped them.
Glad we got the Motomed it is invaluable for me, it was quite expensive but well worth every penny as I use it every day.
Wonder what today will be like hope pleasant despite feeling very floppy and having limited hand function.
Oh well could be worse, glad it is not, yesterday clarified for me once again, that living in the moment was the best way for me.
Have now totally stopped predicting and worrying about what if, doing this makes life much easier and more pleasant for my darling Richie and I.
Thursday, July 22, 2010
Slept soundly until I woke in great pain in the early hours and could not manage to do more than doze fitfully until Richie got up.
Felt like I was on fire that is how painful it was, glad that the thc helped me to fall asleep last night and I got some sleep, hate to think of not having thc.
And having to rely on opiates can imagine that I would have to take several pills to achieve the same result as the THC gives me now.
With THC I do not have side effects that opiates can give you, plus do not have to take other pills to counteract their effects.
Feel a touch down this afternoon really want to sit in the wheelchair but not until the skin is healed over and Ton gives us the all clear.
Miss sitting, my back feel sore from all the lying down I have had to do since 2008, I suppose in the context of two years in bed these couple of weeks is nothing.
But it does not seem to work like that as I am experiencing so much more pain this last week since I can not get a break from the bed for even a few hours.
Amazing the effect just one week has had, found myself almost wanting a sleeping tablet again last night because I was getting worried and know how that can stop sleep.
Too many thoughts often ruin my sleep, once I have one thought more follow and often that is the end of sleep for me.
Somehow managed not to start thinking and slept before I knew it which was excellent, Marianne popped by for a cup of tea, really good to see her.
Nice that she does that, feels so nice and ordinary just like before I became so handicapped when friends would come round on the off chance I was at home.
Going to post this now really miss not being able to find and upload pictures that had becomes such a big part of my daily posts.
It was a big shock when I got a message saying I had gone over my limit, I was going to buy extra space but could not do that as Blogger does not use Pay Pal.
So right now I am recycling pictures.
Oh well back to the drawing board hope I think of something sure that I will think of something.