Concentric circles.

This week has been very difficult because the effects of having been in bed for over a year are very noticeable now.

My muscles have become so weak that my body sags and hangs in concentric circles from my torso to my hips.

It means that my body has concertinaed and is sagging and leaning and hanging in different directions all at once.

It is very destabilising so the rest of my body tries to compensate and my shoulders and neck try to keep me sitting up in one spot.

This is not possible and it gives me considerable amount of stress to my shoulders and neck, especially my neck.

Since Wednesday I have not been sleeping well, and on Thursday did not sleep all night, lay in bed dozing and really felt any minute I could drift off but it did not happen.

Last night thought there would be no problem in sleeping after two bad nights but seems I was wrong about that as I lay here dreaming about sleep.

At the beginning of the week twice I drifted off to sleep only to wake within a short time.

Once after two hours and the second time after 10 minutes, each time I was confused as I had fallen asleep so quickly.

Thought at first that it was the middle of the night, it is a really strange falling asleep so quickly and deeply only to wake up ten minutes later just as Richie’s light was out.

Heard him start to sleep soundly and assumed that this would also happen for me but it did not happen.

I lay with my eyes shut breathing slowly and hoping that I would drift off again, many hours later I asked Richie for thc after he returned from the toilet, and that did the trick.

I also think that the MS is progressing a wee bit too as my hands and arms are not cooperating so well this week.

A friend of mine is convinced that my mouse is too heavy, can’t seem to explain to her that it is a cordless mouse with a battery.

It is not too heavy, that is not the problem, and my problem is my hands do not have the articulation that they had.

And my arms which have been very tense this week and not easy to move, plus sitting up to eat is less pleasant.

Due to the concentric sagging of my body I can’t sit as upright to eat so half recline, which I had to do from the start.

Except now I am slumped lower and my arms/hands are having increasing problems to ferry the food from plate to mouth.

Added to that is has been so cool and dark and rainy for the start of September, on Tuesday it poured for hours.

The changing of the seasons is too abrupt for me, but then again that happened at the start of summer one minute it was 20 degrees and next it was 30 degrees.

Despite how wipe out I was in the heat it is better than grey, wet, cool.

I think all these things plus thinking about the wheelchair has upset me this week and the fact summer has gone too.

No wonder I am feeling it all.

Oh well still going to make the best of today, there was a quick glimpse of sun which was nice.

An early autumn day.

Feeling really nauseous today, that’s the effect of the antibiotics I have been taken this week, they were for a bladder infection.

So had to take them, really don’t like them as they severely de regulate your body, they make me feel sick and they constipate me, luckily the THC helps with that too.

Yesterday was horrible because of the amount of pain that I was in and added to that it was the first dark, rainy, cloudy day and really clear that autumn was here.

Mind you summer happened equally quickly here this year one minute it was 20 degrees and the next 30 degrees.

Today is a pleasanter day and will become even nicer after my shower and hair cut.

At 6 pm 3 friends will be around to drink some proseccio and eat some nibbles like cassava crackers and wasabi crackers and nuts.

Hope that I will feel up to it at 4 pm, hope so, really want the feeling of being sick to go away.

Had a success this week surprising Richie with a practise chanter, this helps you learn how to play the bagpipes.

He would love a s et of bagpipes so the chanter is a good start, and he loves it, so I am very happy.

It is nice to be able to surprise him, have managed a couple this year, got him tee-shirts for his birthday and 3 cd’s as a surprise.

The cd was Booker T and the New York Dolls which is a great mix, and best of all Richie was so pleased.

So that made me very happy, what was really good about the cd’s was I could pay via paypal so I opened an account and I can pay by logging on so Richie does not need to log me on to the bank.

PayPal is excellent for surprising my darling Richie, and it makes me so happy to see his pleasure.

I am going to keep this short; I am trying not to get too upset with finding typing and moving the mouse so difficult.

It feels like I am rolling a huge boulder up a hill covered in sticky treacle and every time I open something I close it too.

Think I shall stop now and find some pictures for today.

Have a good Friday

Autumn is here.

Seems that it is not just the seasons changing but also my MS is progressing, my arms and hands are very tense and painful, especially my arms

Woke up in lots of pain today, finding it very difficult to do much on the laptop, every time I select something ands click it takes twenty clicks before I open something.

Kept opening and minimising in one, which is very frustrating and when I finally got to where I wanted to be my fingers packed up completely.

And in the end after 5 minutes trying to open the window, I only succeeded in closing the window as soon as it was open.

Moving the mouse feels like I am moving a huge boulder, that’s how heavy my arms feel, it is my arms that are the problem not the mouse.

My neck is very sore can’t seem to get comfortable at all, but it is not the pain that is getting me down but my difficulty with the key board and mouse.

Think I need to start using the head mouse and the voice recognition program, as long as I can talk and write life is good.

Even better if I can laugh and of course eat and enjoy.

It is an autumn day, sweater weather Richie called it, and it’s occasionally sun which is followed by torrential rain and more thick clouds.

Summer stopped abruptly.

Hope I do not do the same for a long time yet, as I am so enjoying writing and communicating with all my lovely blog friends.

This morning before I opened my blog I had a look at the blog of note, it is well worth a look, and it has stunning photos and gives a glimpse of life in Indonesia.

http://bogordailyphoto.blogspot.com/

Bogor Daily Photo.

Hope you enjoy it as I did.

Just a short post as I am hurting too much, really need Richie to straighten my body for me, have to wait until he is back.

I shall be trying to have a good day, despite the pain or maybe because of it.

Hope you all have a good day,

Sunshine and clouds.

Pictures for Robert's son Stefan in Greece.


Last night just before I drifted off to sleep I shed a few tears and this morning not long after I woke up I started crying because of the pain in my legs and back and arms and the pain of my emotions.

Thought I had come to terms with this shitty disease but how can I come to terms with a disease that is visibly nibbling away at my capacity to do things and be part of the community.

Feel like I have lost so much, sometimes feel I have lost myself, but know this is not true as I am very much me still.

Even though it is difficult to accept that I have this debilitating disease but it would also take away things such as touch and sensitivity.

I can’t be touched as it feels unpleasant, instead of a light touch it feels like fiery electricity.

I can’t even touch myself as it does not give me any information, one part of my body feels like the other to me, can not distinguish one from the other.

Remember that in January 2007 I tried to masturbate and nearly flipped right out of the chair as it seemed to trigger a painful and violent spasm.

It was so scary that I never repeated the experiment again; it had not been a pleasurable experience.

Don’t know what I thought would happen, but certainly not what happened, my fingers felt like they were wrapped in Velcro and hurt me and the spasm was truly horrible.

At the end of November I came home on my first weekend leave from the RCA, the Rehabilitation Clinic Amsterdam.

On the first weekend we both wanted to make love, we started ok but then it was too painful for me, it felt like I was being rasped open with sandpaper.

I tried to relax but it did not help one little bit, I started to cry softly and Richie scooped me up and held me very tenderly.

That was the last time we made love, we were both shaken, neither of us had expected this to happen, we could both see that it was affecting my ability to walk. .

But that MS would mean it was too unpleasant and actually downright intensely painful to make love was a devasting discovery.

One which I have not come to terms with at all, in April 2007 I had to loan a hospital bed, one that goes up and down.

This meant that we no longer can sleep together as they only provide single beds, did ask if we could pay the difference but that was not possible.

Really miss sharing a bed with my darling and going to sleep next to him and waking up in his arms and sitting up and drinking cups of tea and discussing a myriad of topics.

We still drink tea and talk about many things together and we still laugh a lot together, that has not changed and neither has our love of each others company.

Even now we can be together and it be 2 pm one minute and the next it is 4 pm just like that and we never know where the time has gone.

Still feel very emotional after waking up crying like I did this morning, could not stop very easily, until I shouted that seemed to release a huge bit of tension.

Shouting out ‘’ I have been robbed’’ seemed to do the trick a my tears dried up

Been very aware just now that I need to stay focussed on the here and now, crying releases the stress and tension which is good.


Prolonged crying does not seem quite as beneficial so try to not get into that but it can be difficult.

Have to try to manage it so I get the release from crying without the grief of prolonged crying.

Today is not a pretty sunny day, not yet but can see it could happen as a cloud layer becomes thinner and the sun breaks through.

It is a unique day which I will enjoy, and especially after a shower and haircut and all the trimmings such as a foot and hand soak and when I am done 30 minutes exercise and back to bed to enjoy rest
of the day

Live and let live.

Our Potatoes.















Slept really well until we were woken very suddenly at 7, by the horrible sound of the hedge trimmer being used on trees outside, as they were clipped back into their neat box shapes.

Shame they do that to trees and real shame they are not apple trees, would be so nice for them to have several functions, not just pleasing to the eye but also nice to pick and eat and the birds would benefit.

Richie jumped up and shut the window and fetched some THC which enabled me to sleep again as did Richie and the dogs, who had joined us when Richie got the THC.

We both slept until 9 when the theatre were outside cutting wood, they have been busy since end of June , every day from Monday to Friday they have been occupying the kids play area cutting wood.

It’s a horrible screechy noise and there is no let up, I am sure it is admirable that they are working so hard, I am sure the theatre will look amazing.

Just a shame that they do not seem to take their neighbours into account, so have thought nothing about working from 10 in the morning until 10 at night when it was still light.

When I mailed them to point out that they were occupying the whole play area with their wood cutting, they said they would certainly move if the kids told them they wanted to play there.

Pointed out right away that this was the wrong way round, that I hoped they would stop working when the kids are home so they can use the play area without having to go and ask permission.

Just had a mail saying they would not use the play area after 3 in the afternoon, instead they will move to the corner right opposite my window.

Hope they do not need to work after 3 today or any other day, would be brilliant if it were over soon as their working outside has ruined the summer considerably.

Not only was it so hot but also never endingly noisy, either it was the rubbish containers being emptied, the street sweeping machines or the building workers and when they stop the theatre starts up.

Now they are out cutting wood, makes me feel I am at the dentist every day, it is horrible.

Wish they could work inside as they have enough space and could go into their own yard but need to do it on their doorstep.

Oh well must be tea time as they have stopped and so am I as they have claimed enough of my attention already.

Yesterday Richie noticed that the leaves of the potato plant by the kitchen window were going yellow so harvested the potatoes.

We ate them last night with a salad made with our own tomatoes and a green paprika (capsicum) and rocket salad and basil.

It was delicious, a real pleasure to eat things grown on our small balcony, we plan to grow more next year.

Now I am looking forward to the other potato plant being ready.

Also looking forward to the basil and coriander and cress that is growing in the window box on the window near the bed

Just heard on the radio abit more about the two soldiers from the infamous Black Watch, that were killed yesterday in Afghanistan.

Shame humans can't be left alone to get on with life together without the interests of a small group of profiteers being promoted at the expense of human lives.

The fighting in Iraq and Afghanistan is purely for the oil, gas, minerals and additionally in Afghanistan access to other countries such as China, Iran, and Pakistan to name but three.

It’s a stinking business which has cost too many lives which would have been better spent in their own communities.

Looks like rain now, the theatre have taken their wood and are now cutting inside, so they won’t be outside my window.

Looks like I will be able to enjoy the gentle rain fall and the last of the summer warmth without the back drop of power tools.

Lots of pain today so lots of THC.

Oh there goes the neighbour from up the road on his motorbike; he never seems to go far so always joke there he goes to collect his pizza he just ordered on the phone.

Sure he gets further away, but mostly you can hear him going round the neighbouring streets on his bike which makes a lot of noise when he accelerates.

Richie just told me the bike is a Yamaha with raceing exhaust pipes which have no mufflers hence the noise.

Reminds me of the motor bike I used to have in the 70’s a 250 cc Greaves, which was a delight to ride around on.

Felt quite the thing in those days, what sweet memories I have.