A One Off.

Greta Knutson.
http://en.wikipedia.org/wiki/Greta_Knutson

I woke up slowly this morning and for the first time in ages, was not instantly at the mercy of a series of leg spasms, as well as my arms, torso muscles painfully contracting.

Today I lay quietly, savouring being able to enjoy the experience again, one I have not known since my MS progressed so quickly after diagnosis in 2006.

Quite wonderful not to endure so much discomfort, pain, just because I woke up, no other reason than that, I woke up.

Today was a wonderful bonus, one I don’t know if I will ever witness again, I am glad this morning happened, if it never occurs again, no worries.

Once again was good, just to see how that felt, to feel the difference between gently waking not being forcibly woken like I always am since 2007.


Not much I can do about how I wake up, what I can do is to move on as quickly as I can, and look to enjoy the day, today.

I have really enjoyed the day today, last night the clocks went back an hour, so it’s the first day of winter time, it was dark at 17.30 this evening.


I am looking forward to the nights drawing in even more, soon it will be dark at 16.30 and it will be Winter Solstice and Christmas.


The quality of quietness is very striking at this time of year; it is very noticeable that there are no bird sounds in the mornings.

Strange Dreams.

Enrico Donati.
http://en.wikipedia.org/wiki/Enrico_Donati

Today got better after I could sit up, waking up this morning was horrible, my muscles totally cramped tight, not a pleasant awakening.

It rarely is these days, although some days are less bad, today it was bad, waking up to pain is a shock every time.

This morning I woke after a restless night, full of strange dreams, I lay motionless apart from my legs vibrating gently as the spasms happened every couple of minutes.

Lots of involuntary movement, sadly voluntary movement not so easy, it was difficult to move my arms, I waited for Richie to help me.   

My right arm was very stiff and tightly folded over my chest, it was impossible to straighten it out, so Richie massaged my shoulders and arms.

Then he helped me to catch hold the handle, after the first set of exercises I was please that I didn’t have to ask Richie again for help.

Everyday that I can do my arm exercises is a good day, even better if I can do it all myself, if not then Richie will assist me.

The important thing is that my muscles get stretched so that I can use my hands & arms, this morning I lay in bed contemplating life without arms.

Scared myself silly with my thoughts, so decided to stop and focus on today, not to waste time upsetting myself, once I could refocus I enjoyed the day.       

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Seize The Moment.

Gayane Khachaturian
http://en.wikipedia.org/wiki/Gayane_Khachaturian

Last night I must have slept extremely well as I don’t remember much, hopefully my snoring did not keep Richie awake.

This morning I woke up quite suddenly with a small yelp as consciousness reached me at the same time as a leg spasm did.

Waking up to sunshine this morning was lovely, I enjoyed seeing blue skies and feeling the breeze coming in through the window.

My attitude towards autumn seems to have changed, this year I am not so upset that it is autumn now.

Still sad summer has finished, it’s always seems too soon, but this time I am enjoying noticing the changing of the seasons.

The changes would be more noticeable if we lived in the country, they are not so noticeable in a city, what is noticeable are the cars now the summer holidays are over.

My own changes, my MS progression has not been uppermost in my mind today which is pleasant almost like a holiday.

Good to enjoy the moments, I am happy to notice that I am getting better at grabbing those moments and appreciating them.

Moments are so important, never realised before how important it was to make the best of them all, glad I became aware of what seize the moment really meant.                              

My Pain Is Manageable During Daytime.

 

Elle Loge La Folie, oil on canvas, 1970.

Roberto Matta
http://en.wikipedia.org/wiki/Roberto_Matta

The weather is improving, the clouds are slowly moving away and the sun is starting to shine now.

Friday and saturday were cold, grey, rainy, on both days I wore my big fleece top to keep me warm.

I think unless I am very mistaken, that maybe the last time until autumn, hope summer will start to happen.

Be nice if it were to happen slowly, rather than go from 16 to 30 degrees which is like going from cool spring to blazing hot summer.

This morning I was woken abruptly from deep sleep by my painful right arm and lots of leg spasms.

Trying to drift back off to sleep proved difficult to do; it only worked briefly, kept waking up with my right arm folded tightly over my chest.

Every tiny involuntary movement woke me; my arms were dreadful this morning, better now I have done my arm exercises.

Also better now that I am reading newspapers, e-mails and typing my post, during the day my pain is manageable because I have other things to focus on.

It’s nighttimes that can be difficult, waking in pain and trying to sleep without getting caught up in dark thoughts is not always possible.

Feeling Good.

 
The Strange Country, 1940.
Conroy Maddox.
http://en.wikipedia.org/wiki/Conroy_Maddox
 

Richie got me out of bed quickly as I was having stomach cramps, which were painful and caused spasms.

We were both glad the transfer was fast, nothing happened until I was placed in the Carendo shower chair above the toilet.

What a relief, brilliant that we got there at the right time, after a lovely shower I felt good, right now sitting in the front room writing this is pleasant.

The dogs are both waiting for Richie to get home, he has just gone to collect a parcel, these days now the post offices are gone all parcels get left at a shop.

Tuesday we were surprised to get a note in our letterbox informing us that the post had tried to deliver a parcel, shame they did not ring our bell.

The paper stated we could collect it on Wednesday, Richie went there yesterday, but could not get the parcel.

As the woman in the shop decided that as well as his identity pass, he also needed to have a letter addressed to him.

Riche got so wet in the torrential rainstorm that he did not go again yesterday, he went today and anther person dealt with him, who did not need to see any envelopes.

So seems that the person he dealt with previously had got out of bed the wrong way, and was taking it out on the customers.

  

Determined To Make The Best Of Being Alive.

Homage To Accountants.
Pedro Friedeberg
http://en.wikipedia.org/wiki/Pedro_Friedeberg

The days are going fast as they always seem to in the spring; the days are getting brighter and longer.

Nights are still long for me, luckily I have been sleeping well, but there is still too much time to think about my condition.

When Richie turns the light off, often that seems to switch on my thoughts, this is when I focus on things I think I should have done.

Often these are almost fabricated worries, as if to keep me thinking about something other than my MS.

In the mornings feeling my legs spasming as well as the painful stiffness in my arms triggers off gloomy thoughts.

I hate waking up and being confronted daily with my stiff arms, my pain, everyday it hurts to realise again what I have to live with.

Lying here this morning half awake, aware straight away what my limitations are these days is not easy for me.

Being able to pull my head and a bit of my shoulders off the bed using the trapeze above my bed is a huge achievement for me.

Not being able to do things like sit up, or hold my torso upright or even eat my food is very difficult for me.

I do my best to rationlise and am determined to make the best of being alive.

Enjoying The Day Today..

Betty Goodwin.

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

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.

Here Comes The Sun.

Sun Art.

Another cool day today, hope it gets warmer soon so I can enjoy a roll around in balmy weather.

Mentioned yesterday that I was thinking that now the Foley catheter keeps coming out I will need a different one.

To do so I have to undergo a surgical procedure, to have a supra-pubic catheter put in which can be done as an out patients operation under local anaesthetic.

This is not an easy decision for me as I think that the least surgical interventions the better in my opinion, plastic surgeons will for sure not be getting rich on my money.

Feel that I have to take action now, as the Foley catheter keeps popping out, this is no problem if it pops out in the bathroom, because it gets moved as clothes are pulled off.

It is a problem when it happens when I am in bed, it is really not nice to wake up lying in a pool of urine.

Seems to happen when I have a huge spasm, most times the spasm has been because I need to go to the toilet urgently.

A couple of times it happened as a result of a huge leg spasm which turned out to be caused by toe nail problems.

Once the nails were trimmed and the in growing nail was removed my legs were calm again

Seems from a couple of responses that the supra-pubic catheter does not solve the problem of leakages or bladder problems.

Even heard awhile ago that a couple of people had more bladder infections with the pubic catheter, plus more blood clots in their urine.

One said that her friend had the supra-pubic put in because the regular Foley catheter was causing too many UTI's..

She warned me that there could be more stones and gunge with the supra-pubic catheter and I would need to regularly see a urologist to make certain that there is nothing wrong with me.

Apparently the gunge if it remains in your bladder can cause spasms, which does not sound like a nice prospect.

Suppose that the answer will be a regular course of antibiotics as the way to sort this out.

It is worrying as I do not have that many bladder infections now and was hoping for even less with the supra-pubic catheter not more.

And additional medical appointments are not my favourite things, would rather sit in the sun than in a hospital waiting room.

And another said that the SP Catheter will not prevent all the problems, as she still occasionally woke up in a wet bed caused she thought by spasms.

Think that I am going to research some more before I get myself booked in for the operation.

Right now I intend to enjoy the moment and am going to post this and listen to the radio and enjoy the fact that I can glimpse a hint of blue sky and sun.

After a gloomy cool dark day with rain showers the sun is coming out which is really a beautiful sight.

Shit Happens.

Ludicrous Art.

Seems the bad weather has come here too, was briefly bright but cloudier this morning, then the clouds got even thicker, until they turned into one massive dense grey lid over the city.

At first this made it very muggy until the wind got right up, all the orange bunting put up for the World Cup was blowing around like crazy.

And then it started to rain, the temperature is half what it was yesterday, today it is around 15 degrees, yesterday it was 30 degrees.

One good thing is that today my hands were functioning better; yesterday I could hardly manoeuvre the wheelchair as my fingers would not straighten out.

Getting into the front room was a hell of alot of work for me, made me feel quite demoralised for awhile, until I figured out it was the hot weather.

Today I got woken by my arms clamping tightly together, drifted back to sleep again only to be woken up by a huge leg spasm.

When Richie started to do my leg exercises he discovered the catheter had leaked, first he thought it had come out but that seemed not to be the case.

Seems to have been a blockage in the tube which may have caused the leakage, wonder if that triggered the spasm and or did the catheter popping out slightly cause the spasm.

I know that this means that I need to see our doctor and get her to organise a polyclinic operation for me to have a supra-pubic catheter put in.

This was something that I wanted to have done right away but my doctor advised me first to wait and later came back and said yes do it.

By that time I had heard a few more details about the supra pubic catheter that I did not like and that worried me

Such as the twice monthly changes being unpleasant, that the supra-pubic caused a lot of blood clots more than the ordinary catheter did.
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Heard too that people had a lot more UTI’s, urinary infections with the supra-pubic catheter, this really put me off.

Now it really does seem that the time has come to make the switch, as the ordinary catheter is no longer reliable.

The occasional accident is no problem but now it does happen more often, which gives Richie more work and he already has more than enough to do.

Apart from the extra work it also adds to the stress for us both, not pleasant lying here wondering if the catheter is working alright.

This morning was not our favourite way to wake up, had looked forward to a relaxed start to Sunday.

Richie is very good and always helps me to stay calm and relaxed, his attitude is shit happens and we deal with it and there is no need for me to apologise.

It is not in my control, it just happens, does me good that my darling is relaxed about it and once it is sorted we can get on with life.

Glimpse of Sunshine.

Ghanaian Art.

Last night was pleasant and going to sleep so quickly was brilliant, slept deeply until midday today.

The sun was shining when Richie opened the curtains but there were still no blue skies to be seen, the cloud cover was thinner and you could see hints of blue.

Guess blue skies and sunshine will happen tomorrow for the start of the working week, never my favourite when I worked.

Woken up by arm cramps, where my arms fold inwards over my c hest and clamped there or so it feels.

At the same time my legs spasms, best thing to do then is my arm exercises, sometimes I try to put it off and try relaxing but it is difficult to override those jumbled up MS nerve signals.

Have been doing a lot of thinking about MS and how worrying it is to have a disease where no one knows how or why it happens.

Must be hard for doctors to give pain relief for something that is the result of strange nerve signals about stuff that is not really happening or is it.

The recent CCSVI treatments are very interesting, wonder how so many people develop blocked veins, does this happen because of diet or effects of how we grow our food.

Or could it be linked to pollution, could MS be linked with our use of fossil fuels, horrible idea that MS could be the result.

Apparently MS is also more likely to occur in colder climates, seems that all these things could be true wish I could draw some conclusions from these facts but I can’t.

Wish someone would put together all the variables and research this and perhaps researchers into the causes of MS might be nearer to finding the cause or causes of this devasting disease.

Oh well come as far with that train of thought as I can for now, must take a look no the internet to see if there are new discussions or theories.

I am going to relax now and enjoy the day, feel pleased with myself that I have tidied up my inbox and sent items and also got rid of lots of old favourites in Firefox.

Had saved far too much links and as a result had a very long list indeed which has now been edited down considerably.

Think I will have another edit later and then leave it at that, brilliant bit of work even if I say so myself.

Fresh Lemonade and A Late Glimpse of Sunshine

African Art.

Slept very well last night, and woke up nice and relaxed with only a couple of small leg spasms and my arms were folded and they were difficult to get them out from under the duvet and stretch them

Had to do my arm exercises right away so that I could stretch and move my arms and my hands too needed excising before I could use them.

The sun is coming out now at 19 pm, all day it has been dark and overcast, we had the lights on since Richie opened the curtains this morning.

Suddenly now the sun is shining through the clouds, which have got thinner, lovely a last hurrah of sunshine before dusk.

Makes me optimistic that tomorrow will be a brighter and prettier day, perhaps the sun will shine all day.

Richie finally got my WIFI working on my laptop, up to now we could not work out how to do it and now it is working well.

No more cables trailing through the house and when I can sit in my wheelchair I will be able to use my laptop without Richie having to fetch the network cable.

Excellent and good timing too, well that is another thing off our list of things to do, quite a few other things to do.

I keep meaning to tidy up my sent items and my address book, things that always get left too long, well not for much longer, by the end of the evening it will be done.

The sunshine has given me such a boost, so did the great shower and foot soak with Jasmine oil and the pedicure.

Bliss and afterwards I enjoyed a glass of delicious fresh lemonade which Richie had made, he is going to make tamarind ice cream.

First we are going to enjoy dinner of stuffed cabbage leaves with lentil, tomatoes, spinach and left over cauliflower cheese and tasty organic potatoes.

Well I am going to enjoy our evening.