Friday, August 07, 2009

Luckily it is a tiny bit less hot and muggy today, but only by a fraction as it is still 28 degrees, as it was at gone midnight last night.

Yesterday was really awful, every time Richie had pulled me up the bed and had got me sitting good, then literally within minutes I would have slipped back down the bed and also be sagging too much to the right.

It was difficult for both of us, me because I could not maintain my position for more than a few minutes.

The worse thing was trying to maintain a good sitting position so I could eat, but every time as I ate I could feel myself sliding exorably down the bed.

Made me feel very uncertain and even more handicapped, as well as worried that I was experiencing a further progression of my MS.

On reflection think that it is the heat that is intensifying all my symptoms to an incredible degree.

That is what is causing me to slip and slide in bed; I am just too hot to maintain my sitting position at the moment.

This makes sense especially when I can see a noticeable difference as soon as there is a cool breeze.

Today it is hot and overcast, with a forecast of rain, possibly by the end of the day, and also tomorrow and Sunday.

Feel sorry for friends returning from holiday if the weather is not going to be so good for them getting home.

A drop of rain would be extremely welcome after the muggy heat we have been having, might also be better for plants, fruit and vegetables.

Certainly would be better for me and everyone who can not cope with the heat.

I hate the way this MS makes a heat wave a truly horrible experience, which is strange as I used to love the heat.

Now I really can only cope with the fan right next to me and pointed directly at me, the only time when it is not on, is during the night.

Then if I wake up, I lie here aware that it feels like I am extremely hot and I am lying in very hot liquid.

Not too different to golden syrup, it is an odd feeling lying there like that unable to move an inch.

Just totally unable to do anything, that is when I feel totally handicapped and that is when it hurts the most.

It is also the moment when I have to be very aware and not let myself sink into gloomy, negative thoughts.

Do not want to start crying as it is so difficult to stop crying when you are lying down.

Once you start crying ling down all the tears run straight into the ears which is a horrible feeling and always makes me cry even more.

If I can’t stop crying, I have to activate the bed and press the button on the remote control and lift the bed.

That usually does the trick.

I have always been quick to cry, I cry when I am sad, when I do not feel well but also if I am happy.

I cry if someone else is crying.

When I visited Trinidad I was taken by my cousin to see her mother’s old house which I remembered so well.

It was the house we used to visit regularly every week; we went for lunch and often stayed overnight.

I burst into tears when I saw the house again.

That evening my cousin Aileen was telling her husband Philip where she had taken me that day and she told him that I had cried when I saw Auntie Jo’s old house.

Well, when Philip heard I had cried when I looked over the gate at the old house, he started to cry too.

Later on I was shown the video of one of their 5 son’s weddings, 6 months before, it was an incredibly moving video with all the family crying as they watched the wedding ceremony.

This made me cry and then one by one everyone in the room was crying and when Philip came to see what was happening he joined in too and we were all crying.

My cousin Aileen was the only one not crying, she was handing around the box of tissues saying like she did that day at her mother’s old house ‘’ glad to see you enjoying yourself ’’

At this point I realised that it was nothing to be ashamed of, in fact it seemed to be a family thing to cry easily.

As the visit progressed I realised that it was also national characteristic and basically we are emotional people who are not afraid to show their emotions.

A very simple answer, and yet for most of my life I have been made to feel that I was not in control, that I was a hysterical mad woman.

As this came from my mother, I accepted it as the truth; it was only after I had got away from home that I realised that it was not me, but my mother who was not ok.

But even so I still felt very self conscious and it is only really talking with Richie that I have finally accepted that I am ok.

I have always been ok, but my poor mother was not she was too disturbed by what she experienced in the war.

She and many others like her did not have any counselling or support so all the traumas suffered during the war was left untreated and unresolved.

And then we moved to England and she went on to valium which turned her into a pill addict and someone who became very difficult to live with.

The only way that I could cope was counting the days until I was 18 and then leave home.

Which I did, not too long after I was 18, and I could leave home legally and no one could make me go back.

I was free at last.

If only I could get away from my MS like that, if only there was a way for us all to escape MS.

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