Monday, November 30, 2009
We were unintentionally up real late last night, before we knew it was 2.30 in the am.
I was wide awake having watched a film of the TV series Rising Damp, it was very funny, had a good laugh which was nice.
Very nice to see the cast again, Leonard Rossiter was excellent as Mr. Rigsby.
Trouble was that I was too awake and still too lively to go to sleep easily.
As it was nearly3 am by the time Richie had got me my last baclofen tablets, I took a Lormetazpam.
It did the trick and I seemed to go to sleep quite quickly, the dogs stayed in the bedroom last night and because I took the pill Spike shaking himself did not disturb me for once.
He seems to have to get up many times during the night and shake himself which makes his ears flap.
They sound like pistols shots going off and once I am woken up, I find it near impossible to get back off to sleep again.
Thanks to the Loremetazpam I heard nothing and slept until 12 noon, which was wonderful, woke up then because Spike shook himself and his ears were even louder than normal.
Thanks Spike and a good morning to you too.
Another nasty grey and wet and blowy day seems like we have been getting all the rain these last 10 days.
It is disappointing that the weather is so shitty right now, that I have made no attempt to go out, hope that I do not end up too worried to go out.
Don’t think that will happen and I also know that Richie will encourage me to go out.
At the moment there is no problem as the weather is really not nice enough for me to go out.
On the other hand I need to just do it sometime soon, and for me it will need to be sooner rather than later.
I won’t say when I think that it will happen, but it will happen soon before I build up a phobia about going out.
Sunday, November 29, 2009
Sadly the weather has not been so good here this last week; it rained every time I wanted to go out.
Guess if I can't get a dry day I will just have to accept it is wet and go out nevertheless, not easy for me as rain is not my favourite.
Have to get warm clothes organised, really need a jumper and a pair of trousers, most of my clothes are just no longer suitable.
Lycra tops are no good now as they roll up and can not be pulled straight, not sitting in a wheelchair.
All my trousers are no longer any good as they cut into me sitting and they are not cut right.
In a wheelchair you need trousers that are made higher at the back to compensate for sitting down.
I need easy to put on clothes; most of my t-shirts are too much of a wrestling match to put them on me.
Think this is the time to shed all the unwanted clothes, give them to friends and to the clothes collecting container up the road.
Have been looking online for wheelchair clothes, what I have found is so sad looking that I could barely look at the pictures.
Very sad and slightly frumpy looking clothes on a website called My Life, which put me off looking further yesterday.
Some websites have photos of their products but a site like IT FITS has mainly line drawing of their products.
These bad drawings do not give you any idea what their garments will be like, and they are also not cheap.
Seems that no one has thought that people in wheelchairs not only come in all sizes and ages, but have varied tastes too.
But they do have taste though, not something any of the sites I have seen have seemingly thought about.
The sites I have found, all seem to want to sell a sad and unattractive clothes which is a real turn off for me, I used to be a very sharp dresser.
Sadly no longer not since the wheelchair has become an established part of my life.
The clothes I have seen were horrible and lacking any inspiration seems we are not just handicapped but need to look the part too.
Not me I still want to dress well and I will.
Saturday, November 28, 2009
One minute it is sunny and the sky is blue and the next minute it is cloudy, with big angry rain clouds hovering threateningly overhead.
Richie and the dogs went to the park in the hope of it staying pleasant; hope so as it would be nice for the dogs.
They really need a good time in the park, as they have not had a long walk in the park due to the shitty weather recently..
In a moment they should be back, as I typed that the door opened and the dogs charged in followed by Richie.
They are very happy and relaxed now which is just how we like our dogs to be, Richie is off down the market via the pet shop for some of the dog's favourite food, tripe.
Have eaten tripe in England, and have cooked it myself and it was very good, I marinated it overnight and cooked it in red wine, in a spicy rich tomato sauce and it was gorgeous.
Recall some friends coming round for dinner, they thought the food was very good and tried unsuccessfully to guess what it was.
They guessed all sorts but never what it was, just when I nearly told them what it was, one of them said 'as long as it is not tripe'.
At that moment I was so relieved that I had not told them that it was indeed tripe, can't remember now what I told them.
Probably that it was a piece of beef, that needed long slow cooking, felt bad for not telling them but did not want to upset them.
Forgot then that not everyone wants to be adventurous and try things that are strange to them.
Sitting is going slowly; when I sat for four hours on Tuesday it all went well, but subsequent days have been more tiring.
That could also be the effect of the antibiotics, which do wipe you out and upsets the entire body.
As soon as the course of antibiotics is finished I have another course of tablets to take.
Richie is off to the market now, poor Spike is crying because he can not go with him, poor little thing.
He has just come back from an hour in the park having a wonderful time chasing the ball and has nothing to be so upset about, but that is not how Spike sees it.
It is sunny again, the last hurrah before the sun goes away for the day, hope you all have a good day today.
Friday, November 27, 2009
Slept well again last night thanks to lavender oil and thc, even had a gentle waking up today, felt all the pain but did not moan with pain right away..
I did my arm exercises and Richie the leg exercises and massage and I was ready for the day.
Grey and wet and rainy today as well as cold, it is near the end of November so the weather is as it should be.
Richie is off doing a mega shop, the idea being that he does not have to do a big shop tomorrow and can take it easy.
That is how we like our weekends, preferably with no appointments; there are plenty during the week.
Here nothing gets done without an appointment here; they will make a date for coffee next month.
Very odd when I was new here, I had been used to people dropping by o0r calling up and saying we are such and such come and join us.
Not here, here you get your diaries out and make an appointment for coffee, the other thing I was used to in England that if we were in the pub and friends came in they would be invited to join us.
Here they do not go for that they may say hi but then go their separate ways, strange as it is so different, to what I was used to in England.
England in turn was nothing like as friendly as Trinidad where everyone limes with each other, the more friends the merrier.
Glad when Richie gets back, it is just 4 pm and it is getting dark, winter is coming quick.
Christmas will be here soon which is great.
Don't mind now that I have got Riche's presents organised, yippee!
Thursday, November 26, 2009
The other day a friend commented in an e-mail that it was nice to read a more cheerful post.
I would prefer cheerful myself but sometimes my MS does wear me down and the pain gets to me.
But even then I am usually cheerful and optimistic; perhaps my posts are not always upbeat.
MS is not a cheerful topic, it is a subject people would rather not know about either, and quite right too as it is horrible.
Since diagnosis I have sadly lost a few friends who were too scared and freaked out to be able to see me again.
Until I was diagnosed I only had ever heard of one person with MS, and that was my colleague’s sister, at my last job.
Her sister got diagnosed very young and very quickly was fulltime in bed, she got progressively worse and finally could not speak or swallow, her sight and hearing were also getting very weak.
At that point she made it clear that she wanted her life to be ended; in the Netherlands this is possible.
I was very painful for my colleague and her mother and brother, it had been painful for
them seeing her decline as the disease progressed.
We know that this is my future perspective and I and Richie are glad that I too can checkout when it has got too much for me.
Recently I have had a few moments where I almost did not want to wake up again, could almost see the appeal.
That shocked me so much that I started to cry and pretty soon I was howling and inconsolable.
Thinking of stepping out of this life, this existence is quite something, really rattled me, also because I really wanted to go.
It was too much, I was lying here in pain, every thing hurt like hell, crying did release all the anger and frustration that had been accumulating.
Good to get rid of those feelings, bottled up emotions usually burst out at sometime, better have a safe way to release these negative feelings.
Better than letting it drag you down and wear you out, crying at regular intervals when I need to relieve the pressure works well for me.
When this shitty disease gets too much it is difficult for me to be positive but think that I usually manage.
Still do not think you can fight MS like a boxer in the ring, and you certainly can not win.
What you can do is remain in the here and now, and enjoy life.
That is my intention, find since this has been my guiding principle my life has got better.
I am fighting, to keep the functionality of my arms by doing my arm exercises daily, feel that it helps me.
Funnily enough what also helps me is to have a dog on my lap, on the bed or in the wheelchair; it is ls good for the blood pressure.
Spike likes to lick my hands, it is a dog’s way of bonding, and afterwards my fingers can move better, we have been joking about Spike’s magic tongue.
Laughing is a good antidote to the miseries of MS; it worries the dogs but is good for us.