Not A Moment.

Last night I went to sleep quite quickly, probably just when I was thinking hope that I can fall asleep without any problems.

I recall thinking that and then do not remember anything else, not until I woke up this morning.

It was briefly sunny and the skies were a beautiful blue, sadly only very briefly, so much so that I can hardly remember what that looked like now.

It has become very grey and cloudy, with some wonderfully clouds, they looked like pure fantasy clouds.

Some looked like faces, others like mountains and others were even more fanciful.

Last night before I drifted off to sleep I was thinking about what I was going to write about today.

Only problem that now it is morning again and I do not remember a scrap of what I was going to have written about.

Wish I could remember it now, know that it was about how I am living now, how most of the time I do not think about how I am.

Just get on with it; every now and then it is quite a shock to contemplate exactly how handicapped I am.

When I recently discovered that I no longer have any movement in my torso I was shocked to bits, now that too has passed and I accept things as they and I am.

If I cry about it I could cry forever but that will not help, I can not change it for the better.

But I could make it worse by grieving excessively; mind you losing my mobility has been and still is awfully difficult for me and all those who knew me before to accept.

What I do find interesting is how my perception of myself changed at first because I just could not cope with the rapid changes.

Could not have imagined at the start being as I am now, would not have thought possible to live like I am now.

But it seems that losing so much has made me very appreciative for what I have and it means that life is even more precious to me now.

It has been and is illuminating for me to see this change in me, guess most people will recognise the emotions.

Life is difficult now that I am so dependant on Richie but what there is has become very special to me, so special that I do not want to miss a moment of it.

Not a moment, some say it is brave others that it is pure common sense to make the best of what you have, use it all while you can.

Live life in the here and now and enjoying all that can.

MS Centres.

A friend in Scotland told me about The Revive MS Centre which is a great resource in Glasgow and the West of Scotland.


http://www.revivescotland.org.uk/contact.html


They have physiotgherapy, aroma, reflex, hyberbaric, counselling and socialising amongst a list of other activities.

There are MS Centres like this one in all major towns throughout England, Wales and Scotland.


http://www.msrc.co.uk/

At all the centres the following is available:
Aromatherapy
Magneto Therapy
Acupuncture
Minibus
Advocacy Service
Meditation
BeautyTherapy
Nurse
Counselling
Osteopathy
Chiropody
Occupational
Complementary Therapy
Medicine
Physiotherapy
Dietary Advice
Pedicure
Day Care
Reflexology
Drop In Centre
Reiki
Exercise
Support Group
Hydrotherapy
Shiatsu
Hairdressing
Speech Therapy
Healing
Tai Chi
Homeopathy
Toning
Incontinence info and advice
Vibration Training
Yoga
Advice
Massage
Zone Therapy
Manicure
Hyperbaric Oxygen Chamber

the MS Centres sound excellent sadly there is nothing like that here.

There is nowhere you can drop by and meet people or make use of resources.

There is the Dutch National MS website

http://www.msvereniging.nl/

Which gives you some information but little else, it is not a meeting place not even digitally.

Here the MSVN Amsterdam website can't be used for anything but to read.

http://www.msvnamsterdam.nl/index.html

They seem to have less on their website in 2010 then in 2006.

I tried to put a notice about starting a Skype groups for thosed who are not mobile, who wanted to talk with a group of MS’ers, they would not place it.

In Amsterdam they organise a monthly cup of tea for 2 hours from 3 to 5 pm at the offices of the Amsterdam Handicapped Organisation (SGOA) from September to June.

They also are supposed to have specific themes for these get together’s, this year there is only one about tax and what you cam claim back.

Once every two months there was a discussion evening where a topic was presented and discussed.

The people that go are one small group who live nearby, they also used go to the monthly swimming session.

The MS Swimming Group only catered for those that still have some mobility.

The swimming pool is specifically for disabled swimming yet had nothing to hoist people neither in or out of the water nor from bath chair to changing table and wheelchair.

Just could find any mention of swimming on the website, so think that has stopped too.
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MS Centres would be brilliant here and well used to; in my neighbourhood there are 16 people with MS that I have heard of.

What a shame that the MS Society website is just that and does not offer any tangible support, how can you be supportive without doing anything.

Maybe I am cynical but it looks like a nice job that does nothing apart from make those volunteering feel so good.

‘’ Oh I work voluntarily for MSVN ’’

I am no longer a member of the National MS Society found it had nothing for me whatsoever.

6 Nations Rugby Championship

We watched the two Saturday night football programs last night and before we knew it was gone 2 am.

Seem to be staying up very late and it is not unusual for it to be that time before Richie turns the light off.


Hope that this week we can manage this abit earlier say 1 am and who knows we can even manage to go to sleep at midnight.

That would be nice, better for Richie otherwise he has to do everything in the few hours before the shops close.

We got into the late habit when we started to watch The Wire last year, then we were both surprised that we liked it.

Found it very good, all the characters were well done, you might not like them but you could understand them.

Found myself liking quite a lot of the people, we were both rooting for Naim, when he got a new home with the ex cop Bunny.

It was a very good TV series, one of the best I have seen, sadly it finished and since then we have been staying up late.

Spike was pleased we were up late as he was down by my feet happily tucked up and sleeping peacefully.

Brave dog being confined all day; he is just opposite me so he can see me which seems to be where he wants to spend his days.

Slept very well eventually last night, sadly only dozed initially before waking Richie for some THC, which h did the trick
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So glad that I can use THC would really hate to be using opiates, shame there is such a reliance on opiates.

Going to enjoy the chips Richie is making right now, the smell is very pleasant and anytime now the rugby will start.

Scotland versus France in the Rugby 6 Nations Championship is starting now and the chips are delicious.

Misty February .Day.

Today is a very misty day, it was foggy at first but that cleared somewhat, it won't be a bright day today but maybe tomorrow.

Slept until the cold and the sound of the lorry winching the container up to empty its contents woke me up before 8 am.

Luckily Richie got up then and went to the toilet when he came back I told him that was cold, and asked him for a blanket and could he shut the window.

Soon as Richie had closed the window and put a blanket on me I felt warm again and slept on without any problems for another 2 ½ hours which was wonderful.

As soon as I was awake at 10.30 I did my arm exercises, my arms were very stiff and painful, but once I had done the exercise I could stretch my arms which was good.

Funny how I have become used to living with pain, I am aware of it all the time just now do not give it any time.

I have accepted that the pain that I feel is my nerves sending wrong messages, which does not mean it hurts less.

What it means for me is that I understand what is happening and won’t let it get to me too much.

As soon as Richie did my leg exercises and massage and I was ready for the day, but first a cuddle with Spike.

Spike has been so good since he is locked up, we do let him out regularly for cuddles and of course to go around the block and eat

Every time Spike is out Richie has to quickly close the gate to stop Marleen nipping in and stealing anything she can find.

She is not put off by the door being closed, each time she gives it a through once over, as she is desperate to get her nose in and flick the bolt back.

When she could not do this she growled at it and still kept going trying to find the right angle so she can crack it.

This morning was the same, as soon as Richie had brought Spike in here, he got Spike out for his good morning cuddle.

Poor Spike had to go back in quite quickly as he could not bear Marleen cruising around eagerly eyeing up his chew and his toys.

Poor Spike he has to stay quiet for four weeks, four weeks of Marleen planning to burgle his prison.

Good News and Not So Good News.

Marleen is sitting upright by the window scanning the road, looking for signs of the return of Spike and Richie.
Gareth's Photos From Wales.


Richie has taken Spike off to his appointment with the Orthopaedic specialist, hope that the report won't be so bad, and hope that the news will be relatively good.

Want so much for our little doggie to be getting better, that is what we both hope to hear.

Neither of us has liked our little Spike not being able to do everything he used to do, feel strange, not seeing a mad wee face staring up at me from the edge of my bed.

Until the inflammation in the knee really got to him, Spike was 100% no, not true; he was there for 110 %.

It was a month ago; now, that we really noticed something was not alright with our lovely Spike.

Heartbroken seeing him right now and knowing what he has been like right up to the moment we realised that something was not ok with our wee doggie.

Richie noticed Spike was not alright in the park, when he was uncharacteristically pushing to go home and go home very quickly.

Something he would have to be totally cream crackered to give up and push for Richie to put him on his lead and put him in the bike bags and take him home.

Richie has just phoned from outside the specialist’s office to say it is not serious as he had thought, but Spike has to stay in the cage or bench as they call it here, for a month.

Poor wee dog seems his kneecap is loose and the old back injury is playing up again, the specialist thinks that a month’s rest will do him good.

Not nice news that we have to lock our little hero up for a month but if it will help him then I am all for it.

Think Richie needs to get some big bones from the pet shop for Spike to distract him from his incapacity and imprisonment and to keep him from going nuts when Richie takes Marleen for her walks.


They are back; Spike came walking in like the returning hero, not looking forward to Richie getting the metal cage from our shed.

Whatever we will make it as happy a time for the wee dog as possible, it is a grey day brighter since we know Spike can get better.

I intend to relax and enjoy the film reviews shortly on BBC Radio 5 with Mark Kermode and Simon Mayo.


http://www.bbc.co.uk/programmes/b00lvdrj

Good News From Ton

Slept until 10.30 nearly 11 then did my arm exercises and got Richie to do my legs not too long afterwards.

Needed to do both as I woke up almost screeching because of how still land painful it all felt.

Doing my arm exercises was almost brave as the room had not really warmed up by that point.

Still it was good to straighten my arms out and move my fingers, should be alright to type today, usually I am ok until it is time to be lifted by the hoist then my hands start to cramp up and Richie has to take over the mouse and open and shut things for me.

Once I am back in bed after the toilet and a shower and clean clothes and I have done my 30 minutes on the Motomed my hands are fine again.

Weird but evidence for me, that any stress is no good for MS.

Ton was here at 1.45, sadly no Ludwine she could not be here today she had too many patients this morning.

I did not mind, the fewer people to examine my bum the better,

Ton had good news, the healing is going well, it is even smaller, Ton was nearly saying perhaps by next week.

Except he is a nurse not a gambler, so we will wait and see and who know by next week all sorts could be possible.

So the rest of Thursday is at my disposal, Willes will be here after Mathilda, my physiotherapist who is due now,

So first more arm exercises with weights round the wrist, then Willes to help wit the post, and once she is gone, Richie will get me out of bed at 4 pm for a shower and nail cutting.

All go today and relax again in the late afternoon early evening.

Sweet moments all the way.

Bright Cold February 3rd 2010

Pop Art.

Thought Ton would come here today, so took a lormetzepam last night and slept until 10.30 did my arm exercises and Richie did my leg massage and exercises.

After that I took my baclofen and calcium/vitamin D tablets and then brushed my teeth and washed face and neck and hands.

Then I was ready for the weekly inspection by Ton, from the RCA, the Amsterdam Rehabilitation Clinic.

The phone rang and it was Ton to say he wouldn’t be here today, but tomorrow at 11.45 with Ludwine, the doctor’s new assistant.

She, Ludwine is made for this job, she is so good, good empathy with her target group which are people rehabilitating from a variety of reasons and causes.

When I first met Ludwine I was still walking, if only just, had recently bought a smart black walking stick.

Then I could just about get up and down the two flights of stairs between me and the outside world.

Shame the tablets they have now to stop walking getting progressively worse, were not available then, they may have been able to help me then.

Maybe if my first neurologist had taken some action, things might be different now too, he did nothing and would not even give me any information, none.

He very clearly told me in so many words, I can’t help you are going to get progressively worse.

We can warehouse you, and give you personal care, we just can’t offer you any medical care, and there is nothing we can do to influence your MS.

Sadly there is nothing we can do, but observe and watch and document your steady decline.

All the more reason for me to make sense of it by deciding I can only be here and now, we all are.

We all need to realise that we all only have this now and none of us know what the next minute can bring.

Sounds good to me, like the only good way to live.


It is very cold today and bright and sunny which I am going to enjoy now.