About trying to live with ms and discovering that suddenly most places are inaccessible and that life as a handicapped person is very different.
Sunday, January 31, 2010
Tea And Thc.
Last night, Richie made me some new sleepy tea he had found at the Persian shop on the Kinkerstraat, it seemed to really do the trick.
Together with some THC it made me extremely sleepy and I was fast asleep as soon as Richie had switched the light off last night.
During the night I disturbed several times, felt quite warm, and woke up this morning feeling very uncomfortable.
My arms were outside the duvet so covered myself and tried to sleep on, got very warm and had to uncover myself again and again.
My moaning made Richie get up and come over, he asked me how I was and checked my catheter bag which he found was alarmingly empty
I panicked for a moment when I thought that Richie could not unblock the tube and then thought he said the catheter had popped out.
Because I had felt moisture I thought the little bag of saline water that is used to flush through the catheter had burst.
Right away I worried that all this would require that I be hoisted out of bed immediately.
Instead things seemed to be better than I had thought, the catheter was still in place and the tube blockage was resolved and urine was filling the bag.
What a relief for me, it was really good that the problem was over so quickly; Richie immediately did my leg exercises and got me my baclofen tablets.
So after an initial bad moment was over, I realised that the tea and THC combination had been instrumental in my being able to sleep.
Glad I had such a peaceful night, if it had not been for the tea and THC, I would have been moaning all night.
It is good that Richie can sort out these problems; otherwise we would have had to call the out of hour’s medical team.
We had to do this several times in the past and three times we had doctors here who were not sure how to place a catheter.
Glad I managed to stay calm on each occasion, recall thinking that shouting would just make me feel worse, rather than better.
These days my aim is to do everything I can to make me feel better,
Saturday, January 30, 2010
More Snow.
Lots of snow last night, it came down thick and fast and it is all still there this morning.
Saw a very brave person go by on crutches hope they got to the shop and back safely, really hope the snow clears soon.
Looking forward to more light which should happen soon, noticed today that there was more light in he room today.
That the sun is starting to vary its angle and our Spring will slowly start to happen.
Am going to ask Marianne to look out for the first signs of the crocuses on roundabouts, it is a pretty sight.
I am taking it easy today, took me quite some time to fall asleep last night, kept dozing off only to wake up again.
Really pleased to read on Mort's blog that he will get a quick assessment of his needs, also read he will get a carers allowance to hire in help for his mum.
http://mortonlake-caring-and-sharing.blogspot.com/
Also pleased to hear that Richie's sister has had her carers allowance reinstated.
She had a visit from sympathetic social workers who then told her they were taking her allowance away as she no longer met the criteria.
They would not tell her what the criteria were, so she took action, she e-mailed all the local press and every MP.
Then she contacted the charity she does voluntary work for and heard this was happening to lots of people.
In some cases people were told over the phone that they had lost their allowances.
They were putting together a dossier ad could she send them her story, she put
a full account in writing and e-mailed it to the charity and cc it to the Chief
Executive of the Council and the Head of Social Care.
The two council guys replied rapidly as did the Head of Care. He had looked at the notes of the interview and was very concerned.
He is going to appoint a senior officer to go through her case and they are not allowed to stop my allowance.
The story should be in the local paper next week with photos.
Think Social Services won’t be able to get away with doing this to people needing care, especially now the story is out.
Great news from both Richie’s sister and Mort, taking action is good and shows once again that vulnerable people can and will fight for their rights.
Friday, January 29, 2010
Relaxed Day.
Glaswegian Art.
Last night I was having trouble keeping my eyes open and was drifting off to sleep until the very moment when Richie put the music on and switched the light off.
At the same time as the light went off I seemed to wake up instantly and the music instead of helping me to sleep was waking me up.
Eventually I drifted off to sleep and slept very well until a spasm and noise from outside woke me up.
Everything hurt as soon as I was fully awake, so I very bravely did my arm exercises quickly in order to ease the stiffness and pain.
The exercises do seem to help so I do them diligently every day, think it is also good for my mind, gives me the feeling of doing something for myself which is good.
We were both very slow and dreamy today, so had a nice slow start to the day, which was pleasant for a change.
Richie brought his coffee in the bedroom and we chatted, with the radio on in the background.
Today Radio Five are reporting live from the Iraq Inquiry, Tony Blair is answering questions as to why he decided to take the UK into this war.
It has been clear to me for a long time that we would only hear what Blair wants us to hear, this enquiry will bring us no nearer the truth.
We will only get the official story.
Richie has been very busy today doing the shopping, he made the dogs happy by taking them to the pet shop for supplies of tripe, pigs ears, chews and two new toys.
Spike is overjoyed with the new toys, nice to see him happily playing with toys, a ball and a small tire.
He was quite sad this morning when he could not jump up and give me his toy, he does not understand why he can't play like he used to only a month ago.
Poor wee dog, so new toys have given him a huge boost which is nice to see and given us one too.
It has been a grey overcast day here, getting colder again too, makes me wonder whether the snow they are having in England will be here tonight or tomorrow.
Guess we will see, meanwhile it is dark outside, it is 5.30 pm and Friday evening has begun, I intend to enjoy it.
Thursday, January 28, 2010
Bright Sunny Afternoon.
Woke up to cloudy skies that kept on moving to reveal blue skies and gorgeous sunshine, Richie says it felt mild in the sun.
Have enjoyed listening to the radio, the coverage of Andy Murray was so good that Richie switched on the TV to see him win the semi final of the Australian Open.
Tennis is not my game not like football is so I never watch tennis did watch the Williams sisters and hope that Andy Murray wins the final.
Noticing there that I can not lean forward anymore, when Richie puts dried fruit or a piece of chocolate on the table I can barely reach it.
Funny making such a discovery in such a calm way, no point in making anything of it, nothing that I can do to change or stop it.
Have learned that having accepted that I can do nothing to change my situation, the only thing I can do is to enjoy this moment right now.
If there was something that I could do, I would do it, sure my positivity and will power would have been strong enough.
Got an surprise award from Kris @ Meet the Metatron
http://behold-themetatron.blogspot.com/
I would like to pass this on to;
Stephany @ Soulful Sepulcher
http://bipolarsoupkitchen-stephany.blogspot.com/
Sherry @ Words Salads
http://wordsalads.blogspot.com/
Nadja @ Living with MS
http://ysestringer.blogspot.com/
Ana @ Hella Heaven
http://hellaheaven-ana.blogspot.com/
Webster @ Halt Stop Forget Relax
http://hsfr.blogspot.com/
Libby @ Thoughts Usually with Attitude
http://libybil.blogspot.com/
Rei @ Xenomorph Angel
http://deadtraumfrau.blogspot.com/
Mitch @ Enjoying The Ride
http://www.enjoyingtheride.com/
Nancy @ Life in the Second Half
http://lifeinthesecondhalf.blogspot.com/
Kelli @ Gumbo
http://gumboofblogs.blogspot.com/
Stan @ Is Something Not Quite Right With Stan
http://bipolar-stanscroniclesandnarritive.blogspot.com/
Andy @ Jugheads Baltimore Blog
http://jugheadsbaltimoreblog.blogspot.com/
Judy @ Peace Be With You
http://lapazconvos.blogspot.com/
Mary @ Travelogue For The Universe
http://traveloguefortheuniverse.blogspot.com/
Mort @ Caring and Sharing
http://mortonlake-caring-and-sharing.blogspot.com/
Debra @ living with MS
http://living-with-ms.blogspot.com/
Stacey @ Multiple Sclerosis & Me
http://msxats.blogspot.com/
Tara @ Living Day to Day with Multiple Sclerosis
http://livingdaytodaywithmultiplesclerosis.blogspot.com/
Kimberly @ My Journey With MS
http://myjourneywithms-kimberly.blogspot.com/
Kim @ Things Could Always Be Worse
http://stuffcouldalwaysbeworse.blogspot.com/
Diane @ A Stellar Life
http://dj-astellarlife.blogspot.com/
Cranky @ Musings of a Cranky Caregiver
http://musingsofacrankycaregiver.blogspot.com/
Jo @ The End of the Rainbow: Life after Bankruptcy
http://theendoftherainbowlifeafterbankruptcy.blogspot.com
Susan @ if you are going through Hell Keep Going
http://ifyouregoingthoughhellkeepgoing.blogspot.com/
Sheri @ A Dawn Of A New Age
http://justanotherday-sheri.blogspot.com/
Erin @ The Lemon- Aid Stall
http://thelemonaidstand.blogspot.com/
Amelia @ Tales Of Life With Multiple Sclerosis
http://talesoflifewithmultiplesclerosis.blogspot.com/
Donna @ Arranging Shoes
http://www.arrangingshoes.com/
Robert @ Barefoot Navigator
http://barefootnavigator.blogspot.com/
Friko @ Friko' Musings
http://frikosmusings.blogspot.com/
Carole @ Carole's MS Blog
http://carolemsblog.blogspot.com/
Lakshimi @ Apirations
http://lakven.blogspot.com/
Jan @ Bifurcate In The Road
http://kmilyun.com/
Shauna @ Bugs, Bikes, and Brains
http://bugsbikesbrains.blogspot.com/
Joseph @Life in Motion
http://ptjosephrosa.blogspot.com/
KP @ Random Thoughts
http://kparthas.blogspot.com/
Zoomdoggies @ Zoomdogies
http://zoomdoggies.blogspot.com/
Nat @ London Calling
http://beansmail.blogspot.com/
Marc @ Wheelchair Kamikaze
http://www.wheelchairkamikaze.com/
Joan @ A Short In The Cord
http://shortinthecord.blogspot.com/
Wednesday, January 27, 2010
Good news and Not Such Good News.
Today it getting dark early, it is 3 pm now and already it looks like the light that was there is going.
It might even snow again, it was snowing merrily at mid day, and it has got colder, cold enough for the snow to happen again.
Ton arrived punctually as always and as usual looking cheerful and dapper; it is nice to see him.
We both feel he has become a valued friend, in the time he has been coming here to supervise the wound and supporting Richie and myself plus giving Richie invaluable advice.
Today he told us that it has got even smaller, he will not give an estimate when it will be healed up again, but hope as we do that it is soon.
Been quite a busy day today, we had someone from Welzorg to replace one of the wheels on the wheelchair, followed by a visit from Harm also from Welzorg and Michelle my consultant, from ARCA, to discuss protection for my legs.
They have ordered a bag with thermo lining that goes up to my waist in front and up to the back of my knees.
Sounds pretty good, I like the idea of my legs being protected and kept as warm as possible and it sounds like this will do the trick.
They were both very pleasant and helpful; Michelle stayed for ten minutes after Harm had left, so she could have a chat and also check whether I needed something else.
Very nice for them both to be so attentive really appreciate it very much.
Sad news though, the wonderful man from Summit, Elwin has left his job, so as soon as I can sit again we will proceed with another advisor.
Shame as Elwin was so good, I am sure that his replacement is also a well trained person, with the necessary people skills as Elwin had.
So bad news and good news and more snow, if it comes down like this all late afternoon and evening we could have another winter wonderland.
The canals are all frozen over again and the skaters will be getting excited, if there is a prolonged freeze they can dream of doing the race that goes via 11 Friesian towns called the II Steden Tocht.
Labels:
Arca,
leg protector,
Summit,
Ton Peeks from the RCA,
Welzorg
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