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.

Sunny Intervals For Sunday

 

Unknown Artist.

Slept wonderfully well last night, even managed to fall asleep again this morning when I woke up sooner than I wanted to.

Asking Richie to shut the windows really helped, as soon as the cold air was no longer wafting into the bedroom it was easy to slip back off to sleep.

This is always such a big achievement that on the rare occasions it occurs I enjoy it tremendously.

Feel quite relaxed now after being able to do something as ordinary and simple as falling asleep again after waking up.

Never realised until MS that it would become such a rare event, did not realise before, that relaxing my body would also be a rare occurrence.

When I press the button on my bed that lowers the foot end and then the head end of the bed so that I can sleep, I can’t stretch out and relax myself.

I never thought that my body would not be able to relax very much or not at all, that thought never crossed my mind, certainly not when I was just diagnosed.

I can not move my legs or my torso, so just have to lie as Richie has organised me, can not straighten a leg or tense it up and relax.

My way of relaxing is to fall asleep and hope that waking up will not be by leaps and bounds, literally, as my fingers cramp and twist in jolts of movement.

Hands do the same ball up into tight fists and are difficult to straighten out, then the legs start drumming and gently vibrating and kicking up.

Relaxing only really happens in my mind as I try to override the sensations produced by the nerves transmitting the signals.

Scrambled messages, wrong messages, jumbled messages, nerves are all transmitting them at the same time, or so it feels like and no wonder it feels so awful and can’t be controlled.

If they could then I think that researchers would be well on their way to working out the causes for MS.

Controlling the nerve message would surely be able to change the w ay MS affects us all, what a wonderful fantasy one I can enjoy having many times.

I Need To Concentrate On The Positives In My Life And I Do.

Joseph Stannard.

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



The other day I had a moment of totally clarity where I did a sort of mental double take as I thought that there is really no need for me to worry about what is happening and what will happen.

No need at all as I can not alter the course of my MS, so wish that I could but I can not do anything to stop the inevitable progression of the disease.

What I can do though is make my life easier by not getting panicked and not worrying both those emotions are so draining, they take away too much of my valuable energy.

Those emotions are too negative and instead of helping me focus on the moment keep me worrying about what will happen.

It was good to realise again that I can focus on the positives in my life and not the negative aspects.

This does not mean that I won’t recognise what is happening because I do; I am very much a realist.

Do not want to swap worrying and fabricate an illusion where nothing is wrong, not that I can do that as my body is a stark reminder of the effects of my MS.

As soon as I yawn my arms get all cramped up, so waking up and yawning makes for a horrible few seconds of being stuck as my arms weld themselves together.

My arm exercises help me to straighten my arms and use my hands, two very important functions for me.

Recently bee getting upset at the thought that my arms and hands will soon not be functioning well or maybe not at all.

How will I/we manage when that happens is a question that I can not answer now, I am sure we will see how to manage it when it happens.

For now my arms and hands work, typing is becoming frustrating as my little fingers constantly touch letter and numbers that I had not intended to.

Makes for a lot of editing but that does not bother me, I am glad and happy to be here, to be able to share my daily story in my blog.

The sun is shining just now and I am listening to some good classical music on BBC Radio 3, so much better than having to listen to gossip or about the Blitz on the other channels.

A sunny day like today makes all the difference to how I feel and right here and right now I am feeling good.

Going to enjoy my day very much, especially now I have clarified things for myself once more.

Why fight against myself when right now I need to concentrate on the positives in my life and I do.

Ever The Optimist.

Gertrude Abercrombie.


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

Dreary grey sky again this morning without even a tiny glimmer of sunshine to be seen anywhere after Richie did my leg exercises.

My legs were not too stiff and tense this morning which was good, Richie picks up each leg in turn, he holds my ankle and lower leg and supports my knee.

Then he lifts my leg towards my head as if I were cycling, he does this once with both legs, then he massages both legs from foot to top of thigh.

After that he lifts both legs in turn, then he carefully places legs in a good position and puts feet up against foam bolster at the end of the bed.

This stops my feet from collapsing to the sides which results in my feet pointing down in the wheelchair.

Which also causes problems with footwear; it seems that if my feet are not braced against the bolster, it would increase the time my feet slip off to the side.

Feet hanging or pointing down is not good, the other thing Richie do is to reposition the long cushions I rest my arms on while sleeping.

He squashes them up and use them to keep my knees from flopping to the side which is not good either as it stop my knees being flexible.

I had done most of my arm exercises before Richie did my leg exercises, the only ones I had not done was the one with the handles over the bar over my bed.

Enjoy that exercises as it helps me to stretch out my arms, excellent thing to do not long after waking up.

Especially good to counteract the cramps and the feeling of having a strait jacket around my arms and shoulders.

After the exercises and my calcium/vitamin D tablet I sit up using the beds handset, once I am sat up Richie uses a small long cushion to prop me up on the right.

This stops me slumping too quickly to the right side and it has been very effective, but it does need to be regularly checked and adjusted so it gives me the maximum support that I need

Briefly the sun came out and the thick cloud cover lifted so the blue sky became visible, this did not last for longer than 30 minutes before big clouds drifted by and massed up to form a big grey cloud cover once more.

Hope the sun and the blue skies happen again, for a short time it was so pretty outside makes me hope for more sunshine today.

Ever optimistic.

Hoping For Sunshine This Afternoon.

Paula Modersohn-Becker
German Painter, 1876-1907


http://en.wikipedia.org/wiki/Paula_Modersohn-Becker


Slept well until we were both woken up at 02.00 by Spike, who is obviously feeling better as every day or so he starts to walk around again at night.

Richie took quick action and put him straight out of the room and we both slept once more which was good, could hear that Richie was asleep just before me.

Actually quite enjoyed waking today as my arms did not get as cramped and did not feel like they were as tightly folded.

Mind you it still felt like my arms were bound up in a straightjacket but without the cramps and feeling like the straps were getting tighter.

I could stretch them relatively easily by holding on to the trapeze handle over my bed; I pull my shoulder off the mattress 12 times x 3.

Then I get Richie to loop the trapeze over the metal bar it hangs from and hang the two handles on a plastic cord.

Holding onto each helps me stretch my arms well, I do that at the beginning and end of each set of exercises by stretching my arms.

It feels really good to do these stretching exercises, now I have the handles on the plastic cord I feel my arms can stretch easier.

Much better to have the handles to hold onto, I did try and stretch my arms without any props but now it is more effective with the handles to assist me.

Sadly there is no sign of the sun yet today, all I can see is a dense grey cloud cover which
does not seem to be lifting right now.

But you never know what will happen as the day progresses, the cloud cover could lift and drift off very quickly.

Once this low weather front has passed over us a high is following behind which will bring sunshine and warm weather.

I am going to be optimistic and hope for a sunny afternoon today and pleasant warm weather.

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.

Brilliant Visit.

Had an unexpected hard time falling asleep last night, was quite upsetting especially as I had thought I had solved my insomnia problem.

At 3 am had to accept it was not going to happen so took a relaxant and that seemed to help me as I slept after about 20 minutes.

Slept until 11 am which was very nice, felt rested and quite relaxed, until I yawned and then my arms cramped up and my legs had a huge spasm.

Instantly felt all the pain again, which was too much for me this morning so I cried, had a real good howl and let it all out.

Cried out all the pain and all the frustration of being dependant for everything, my biggest frustration is not being able to move my body.

Hate that I can only move my arms and can only pull my head and shoulders off the mattress with the help of the hand hold which hangs over my bed.

When I started crying Spike came and stood next to my bed and started crying along with me, until Richie put him up on the bed.

He then set about diligently licking my hands and then he moved in on my neck and face and tracked down every single tear and licked it up.

After awhile I started to feel very damp but by the time the wee dog had stopped and was allowing me to stroke his head, he seemed to be very pleased with himself.

And so he should be as by the time he had finished I was feeling much better, he is a lovely little dog, he is always very concerned about me.

Very sweet that Spike is so concerned about me, he is a very nice little dog, he really does seem to be very fond of me.

Today there has been a tight cloud cover, everything was grey and it rained pretty much the whole day.

A very good friend Anja, came to visit us which was brilliant, really nice to see her, we had a great visit.

Of course before we knew it the time had flown by and it was 5.30 and she had to say goodbye and go to catch her train home.

It was a very good visit, Anja is going to try to come back next week which would be excellent.

A Spring Day in November.

Despite a huge problem with waves of sweating last night I did manage to get off to sleep without lying awake for hours.

Before I did drift off I had to keep placing my arms over the duvet to reduce the heat somewhat.

Of course as soon as my arms were on top of the duvet, I would feel how cold it was and my temperature would plunge rapidly and I would have to get my arms back under the covers as quickly as possible.

The good thing was that despite the sweating, which was horrid, sweat was dribbling down my neck and causing my neck and ears to feel sore.

Glad I went to sleep when I did as otherwise I am sure I would have started to scratch the irritated skin.

Slept well but again got woken up by a spasm when I must have made a tiny movement with one of my hands.

Hate the way being awake makes me so aware of every bit of my body that hurts, this morning I was instantly boiling hot too and dripping with sweat.

Richie heard me and got me some THC which let me drift off into sleep again, lovely; a few extra hours were just what I needed.

After a couple hours I woke up again and again the pains were all awake too and again I was bathed in sweat.

I distracted myself with doing my arm exercises, they went very well and the THC seemed to help me relax plus I managed to use the handle above the bed to get my shoulders off the mattress.

Important for me that I do the arm exercises every day, am convinced that the exercises have given me longer use of my hands and arms.

I am hoping to get some feedback from my doctor and the neurologists this week about LDN. One neurologist promised to telephone appointment, so far he has not phoned.

The other one Dr. Prof. Polman from the V.U, Amsterdam has not even sent a read receipt, probably too busy being an MS expert.

I do recall that despite being a well known expert on MS he had no suggestions for a treatment plan for me in 2008.

Our doctor, our GP, will be here on Monday to change the catheter so I will use the opportunity to talk to her about LDN.

I think that Dagma will have more chance of getting some feedback from the neurologists than I have had so far.

It is a pleasant sunny day; Richie says it feels spring like today, the calm he reckons before the next outburst of rain and high winds.

Have a good day.

An Electrifying Night.

Funny how not sleeping happens suddenly and seemingly for no reason, one minute was sleeping no problem and the next not.

Gareth and Paul are going to find some of the oils that help you relax and sleep, Rain sent me the list of ingredients in her sleep inducing oils.

Lavender and bergamot featured, used to drink lavender and valerian tea, maybe I need to do that again.

Having a lazy and relaxed day today, which I needed after my disturbed night last night, woke myself up a couple of times too.

Which was not nice at all, as well as being quite a shock and then of course as soon as I was awake all the pain became noticeable.

Every tiny movement provoked a spam or a cramp land there were constant small twitches in my upper legs and little electric shocks in my fingers, hands and elbows.

The temperature must have got milder or it was another MS thing but all of a sudden I was bathed in sweat but when I put my arms over the duvet I was instantly cold.

Seemed to spend the night putting my arms under the covers and back out again, and each movement provoked spasms and cramps and electric shocks.

No wonder Richie woke up with the racket I was making moaning and struggling with my cramped up arms.

They really locked up a treat last night was very painful.

The cloud cover got thinner and the sun came through and Mathilde came for our Thursday physiotherapy session where I had a great time screeching and carrying on badly.

Always great fun a session with Mathilde but afterwards I needed to take it easy, as it has been a nice afternoon sitting looking out of the window.