A Bright Sunny Day.

Trinidad.


The clock went back last night, so we are now living in winter time, not my favourite time.

Not much that I can do about it so this year I will not bore everyone plus myself with going on about how much I hate winter daylight saving time.

In the past I would not change the time on my watch preferring to work out each time what the time really was.

Perhaps finally I am coming to terms with the idea that things that I can not change will not get my attention.

Could be good for me if I have learned this, as I do use up valuable energy on things I can do nothing to change.

Think that someone like Dorthe would have her card well marked these days, she was an example of a friend who one ends up tolerating because of a vague memory of friendship.

When I first knew her my self confidence had taken a nose dive, this did leave me open to peoples abuse

My self esteem has taken quite a bashing from the MS but I have managed to get to grips with that and really have understood that MS does not define me.

I am alright; I am still quite a woman even if my body won’t cooperate these days, it is not easy to be so handicapped.

As soon as I wake up in the mornings I am confronted with my bodies inability to move and the first spasms happen and my arms clamp shut as I yawn, and again I am aware of the pain.

I do my arm exercises, when I get my arm straightened out, which does seem to help, am sure that the exercises have helped me retain the use of my arms and hands.

Today has been a bright and sunny day, nice to look out of the window on sunshine and birds hopping about on the bird feeder.

Have to relearn to love this time of year again and I will once I am back outside and able to feel the wind and smell the outdoor scents.

Looking forward to the prospect of being liberated from my bed and tasting the delights of the outside world once again.

The Uninvited Houseguest.

Post Modernist Art.






Expressionist Art.






Vincent van Gogh.



MS is a shitty disease that came to visit uninvited and decided to stay.

First there were small tremors in the legs, then tingling in the hands.

Walking getting difficult, dragging right leg and stumbling more and more.

Quickly had a stick, then a walking aid, then a wheelchair.

Fell so often in the time before but always a reason, many reasons, when all along there was but one.

Difficult to explain the many strange, uncomfortable and painful sensations.

So many too, on my head and scalp tingly mildly at first, now there are, little electric shocks, tingling, jangling, irritated, oversensitive, feels on fire.

Tingling in the fingers, but fingers worked, could still roll my joints and pluck hairs and file nails and paint them too.

No problem with knife and fork, or eating with one hand and holding a glass with the other.

Could type with both hands and write with a pen, no problem turning pages or reading letters, or shuffling papers or reading the newspapers.

Could pick up the teapot and pour tea, could spread butter on bread, pick up a piece of cake.

Hands stopped functioning well and I could not do too much.

Then the spasms became more, and stronger, they flipped me backwards out of my wheelchair.

That hurt my back and my neck real bad, hanging there until rescued, scary times hanging with vomit running across my face and eyes.

Rescued by my darling and comforted and cleaned and drank tea together.

Had already got used to being washed and dried, was happy I could still do m y face and teeth.

Painful sensations are moving bit by bit across my body; in 2007 it had got to near the top of my legs.

Now it is up to my breasts and I feel the full range of painful sensations up to my armpits.

It is tingling, fizzing, stinging, pricking, and slashing, shocking.

My arms and shoulders are very stiff and painful, difficult to straighten them in the mornings.

At night I lie where I am placed.

In the morning as soon as I am awake I feel all the painful sensations as they travel around my body.

The MS has stolen much since it first came by as a sneak thief, then it got bolder and just marched in and took.


I can still smile, laugh, cry, shout, express love and be loved.

Can communicate, can eat and drink and breathe.

May have no independence of movement or actions now, but I have my will, my intelligence and humour.

As long as I have that I am still me.

Jacob van Lennepkade, Amsterdam

These pictures are of the canal at the end of our street Richie took them yesterday on his way to the Vondelpark.

Today feeling reasonable after waking up from an incredibly deep sleep to totally wide awake and in pain.

Felt extra painful today and took three bags of thc before the pain subsided and I was able to relax.

Now do still have the painful twinges but notice that they have moved around again, quite a relief to me.

Always think oh dear that's unbearably painful perhaps need to tell the doctor about that only for the pain to decamp from my chest to my elbow.

A major problem is suddenly a painful cramp in my lower arm and not a chest and breathing problem.

Do not know if wandering pain is common thing that everyone experiences, know now that rapid temperature changes is one of the MS effects.

As are spasms and cramps and all the strange tingles and electric currents and the pricking and slashing pain as well as feeling on fire.

Major one is the MS girdle, that feeling of having a corset on that is being pulled tighter.

The other thing that I have are strange sensations on my head and scalp best described as the hairs on my head standing on end.

Oh well it is a strange illness really hope that someone will find the way to stop the progress of the disease and from that come up with a cure and prevention.

I know that even if something were found now that it would not help me wish it could as am not sure that I can cope with this steady decline that is happening to me.

Takes so very much to keep positive but its my only choice as to do anything else would mean more pain plus depression which I hear is a major factor with MS.

My choice as always is to be positive and to make the best of it all and to enjoy today.

Thanks for all your support it really does help, it is good to give and receive support good to be part of a community, a supportive network.

Beautiful day today very sunny a real spring day which is lovely especially as I can begin to enjoy it now my pain has diminished.

Its almost impossible to adequately describe pain, all the time I have this strange tingling feeling going up and down my body starting in my toes and going up and down my body in waves.

First it’s a tingle then it feels like electricity then it gets hot and feels like pins are being stuck into me and shortly after it feels like hot slashing pain and then the whole thing from the start.

Added to that the sudden spasms in my legs which make me feel that I have been kicked in my lower back and the arms cramps which makes my arms become rigid and clamped to my body.

All of it bloody horrible and sadly nothing that I could prevent or stop by meditating or breathing slowly although these are good things to do they do not give me relief from pain.

Luckily I can use cannabis which is vaporized in the Volcano and I use bags of THC which I inhale.

Cannabis is an excellent pain killer, appetite enhancer, relaxant as well as a good way to get to sleep.

Would rather use this plant than alot of pharmaceuticals where you have to take two extra tablets to control the side effects of one tablet.

Tablets have such unpleasant side effects they can make you so drowsy and incapable of being able to take part in life that I decided not to use them.

Have just had several bags of thc and the pain has diminished considerably so I can start to enjoy the day.

What a life!

At first woke up gently and as I savoured the moment a huge spasm got me by surprise and I howled in pain.

Then as I tried to breathe deep to try to relax, my back, neck and shoulders became very painful and one cramp followed the other.

Tried to do my arm exercises in the hope that they would have an effect, they did but not the one that I wanted.

Was bloody awful made me end up whimpering with the pain, poor Spike ran next to my bed and was calling to me.

Richie had already corrected my position in bed and pulled my top out from where it had creased up under my shoulder blades.

Although I can't move my body it is constantly shifting around so regularly lie in a banana shape.

From the waist this is leaning to one side and the top of my body to the other side and my neck trying to compensate.

Because I have moved the top gets wrinkled and like the Princess and the Pea this I can feel which is amazing seeing as there is so little sensation in my body.

Richie got me a couple of bags of THC and that did the trick finally the painful cramps stopped.

Then Spike came up for a mega cuddle and Marleen was down at the foot end of the bed something Spike tolerated this time as he was up by my head licking as much of my neck and hands as he could with the odd one on my face.

The morning cuddles with Spike do us both good and afterwards we are both happier and Spike and I have bonded.

Feel alot better now Richie has massaged my legs and I have had the morning baclofen and the food supplement chocolate drink.

Strange awakening so quiet one minute and so very painful and loud the next then tears and sobbing to now where I am ready for Sunday to happen.

Hate all this crap hate that I am crying because of the pain that I constantly need to be moved round in the bed.

That my only movement is being able to pull the top of my body off he bed until just under my shoulder blades apart from that and arm exercises I can not move at all.

These days I feel like a talking head with a disembodied body it’s a weird feeling one that I still can’t cope with too well.

My solution is the head in the sand one I try not to look at myself as that upsets me so I only look at my face.

And even that gets me and has the tears rolling down my face as I contemplate again how much I have lost.

It hurts like hell and then like now once the pain is expressed I can get on with everything else.

What a life but still it is mine.

Ready for the day....

Horrible abrupt awakening this morning at around 8 am a very painful leg spasm woke me up.

It felt like a mule had kicked me in the back, which was very unpleasant indeed.

Tried all sorts to try to head off further spasms and either drift back off to sleep or get into that lovely dreamy place I got to yesterday.

Sadly this seemed impossible as one painful spasm followed the other and every tiny movement and even me lying totally still did nothing to change or stop them happening.

A very unpleasant way to wake up and we are both abit knocked around by it, especially as it got kind of late last night gone 2 am before Richie turned the light off.

Because of my waking up yodelling with pain at 8 we probably only had 5 hours sleep which is not quite enough.

As soon as I could did my arm exercises and after that Richie massaged my legs and now I am ready to face the day.

It's a new day.......

Woke up as usual except oh joy today I dozed off again after the usual abrupt entrance into being awake.

It was glorius having abit of time dozing before being fully awake, lay here wondering where the low moaning sound was coming from and then realised it was me.

Funny to realise that the sound of someone in pain was coming from me.

Been getting lots of comments recedntly which is really great makes me feel very supported.

Thanks everyone for your caring it is very much appreciated.

Hopw you all have a good day today.

Who knows tomorrow could be the day.

Good nights sleep last night got woken up as usual by cramps in my arms, which means that I do not wake slowly.

It is more like being hurled than a soft sweet awakening and once awake sadly little chance of resuming sleep as every move even yawning provokes another cramping up of my arms.

Bad news yawning whilst doing the arm exercises as my arms go rigid and full of pain, it will take a minute or so to get them to relaxed again.

Most days its all over with happy slumbering once the rigid arms have woken me up but every now and then I sucessfully drift back off to sleep.

Happy days when that happens and I can shut out the reality of MS for another hour.

Who knows tomorrow could be the day.

Good night's sleep last night fell asleep before the music stopped.

Often lie awake for what seems like hours, often don't know when I fell asleep except know have been asleep when I am suddenly awakened by extremely strong muscle cramps in my arms.

Muscle spasms and cramps courtesy of the MS, amazing that I can't laugh or yawn without my arms and shoulders getting cramped and staying like that all through yawning and laughing.

When that happens sleep is over as it is difficult for me to go back to sleep again, so usually the only thing I can do then is listen to my darling sleeping and if it is very early hear the sounds of Amsterdam waking up.

Last night was very good fell asleep real quick and when I woke it was 10 am and only briefly pain and discomfort in my arms even managed to doze for awile until Richie got up and it was time for leg massage and pills.