Sitting here feeling like half a woman, it is a strange feeling for me, after my life with my parents I have always had to be in control.

MS has rather derailed everything so it amazes me that despite having no physical capabilities I am still so mentally capable.

Nothing wrong with the mind which was one of the reasons I wrote about other things and not just endlessly about the progress of my MS.

So important for me to know that despite my physical disability I can still write about the things I believe in.

And the other important thing is that I have MS but it has not got me, I am not totally defined by MS.

I am more than the MS we all are.

It really is so very difficult to come to terms with this debilitating disease and needing everything done for you.

Was very aware yesterday after my shower that Richie has to do it all as I can’t even apply cream to my body or face.

Try to accept that plucking the black hairs on my chin is a thing of the past and cleaning and filing my nails also not possible not by me.

My needing personal care was at first a very upsetting and intrusive thing; happily it is not like that with Richie.

He is so very sensitive and careful in all ways which is very good for keeping me reassured that I am safe.

Know Richie often feels that he is being very intrusive and heavy handed which could not be further from the truth.

But how can it be anything but strange to have been in bed now for close to 11 months, am aware I am constantly right now on the verge of sobbing at the horror of it all.

Horror certainly at the loss of movement, the enforced isolation at home, mainly in one room, the missed opportunities to interact with my immediate outside environment is all very upsetting.

Really miss my trips around the block with Richie and the dogs, and trips to the market, used to go at least twice a week.

For me a market is a meeting place for the people from the neighbourhood and can’t be replaced by supermarkets which are so incredibly impersonal.

Looking forward to being able to go there soon, had hoped that I would be starting to sit again in May.

But then it became in June and now it is already July, seeing as the month has only just started have to be very patient.

Am very torn on whether it will happen or not, concerned that I will have to wait until August and by the time I get out the weather might have gone from hot to cold and wet.

Getting really concerned how it all works out, sometimes totally doubt that it is going to be possible for me to go back outside ever again.

Starting to believe that a life in bed is all that I will have, if that is so have to make the best of it.

What would that be like, when all I really want is to get out and about and roll up the street in my electric wheelchair smiling and talking to neighbours on the way to the market.

Oh well for now I have a dream of getting out soon going to keep it alive.

No matter what happens have to keep hope alive always have to do that to make life bearable to keep from getting stuck in negative thoughts and feelings.

Really no point to negative thoughts they just drain out all joy and that is not good; with a handicap you need more not less joy.

Hope the weather does not go bonkers and get all our MS symptoms going mad this weekend.

Intend to put all my questions and worries to one side and concentrate on right here and right now.

That is after all what we have The Here and Now going to enjoy it now.

One minute I was sleeping and the next awake, at first I lay happily for some minutes and then all the pain woke up too.

Really horrible could feel the whole range of the nasties plus the sheet or my top had got a tiny fold which was really irritating me in a big way.

Really noticeable how these little creases and folds can drive me pretty mad with the nagging irritation which turning to a big pain if left too long.

I am really happy given all the pain and discomforts that I can manage to sleep at all which I think is amazing.

This is all due to the relaxation the THC gives me.

Glad that I can as would hate to lie awake in pain and worrying about what the next progression is of the MS.

Really relieved this is not happening as would hate to be in that situation, get quite worried at times about what is in store for me.

I am not superstitious so do not put any supernatural meaning on things for example was very aware of words that I could have used instead of amazing such as miraculous.

Do not believe in miracles as I am convinced everything has a rational cause, I might not always understand everything but believe everything is understandable.

Apparently if I had stayed in Trinidad my chances of getting MS would have been drastically reduced.

In fact I might not have got MS at all if we had stayed in Trinidad as it seems there is less MS near the Equator.

Of course we would never have moved if I had a say in the matter or if the rest of the family had been able to have their say.

In so many ways it is a shame we did not stay also for my parents perhaps they would have been happier if they had stayed.

Moving to England certainly did not make them happy at all, far from it and refusing to talk about what was bothering them caused considerable strain for all of us.

Guess that is why communication is so important for me, must be like that for other people too, we need to communicate with each other.

By communicating our stories to each other we are creating links between us, bonds that help us to understand each other.

We need to understand each other so that we can live together.

Telling our stories are important, telling my story and what my life is like with MS is important and a daily part of my life.

Blogging has become a very important part of my daily life, blogging gives me more of a life than I had and gives me the opportunity to reach other blogger around the world.

It is a great tool for communicating and we need that very much so that we can support each other by communicating our stories, our mutual stories.

Those stories are important they keep us alive in each others realities.

In my reality the sun is shining and it is a wonderful day which I have been enjoying very much.

Woke up crying today.

Edmonton, Canada.


Woke up this morning crying, Richie was straight over to my bedside and held my hand and stroked my face lovingly.

Abit of a shock to wake up like this but after the storm of weeping was over it was quite a relief.

Good to be able to share everything with Richie especially these moments as its better to let it out than keeping it in.

It is very scary what is happening to me and not acknowledging it would not be good.

I am frightened and do not want to hide it from my myself or Richie or anyone else.

Once my tears stopped I could dry my face and start doing the arm exercises that I start evry day with.

And now I feel alot better and can enjoy my day.

It is frightening what is happening as the progress of the MS has been so very fast it has been difficult to keep up with it emotionally.

Edmonton, Canada.


Chose for life or not.

Perspective is very important now my options are limited. Do I get on with it and make the best of everything and enjoy what there is to enjoy

Or do I remove myself and don't get on with it and don't make the best of it and therefore don't see what is there to enjoy?

The options are either be positive or chose for negative and therefore not for life.

Despite it being hard living with the quick progression of the MS for me its clear that I had no choice but to chose for being positive; the other option was not good.

When I had to stay in bed realised I could cry and howl against it and get Richie and myself depressed or I could chose to acknowledge all the good things like our love for each other.

I made the choice that is best for us and for me, the correct choice for us, that was to chose for us.

Simple there was no other option that was viable.

Did not want to get sad and take everything down with me and get depressed that is not my choice

It’s the classic half full or half empty glass I chose to see a half full glass and to enjoy the party.

Don’t want to stop participating before I have to, want to enjoy all I can and there is more than I thought.

I owe myself more than sadness because I deserve joy and so does darling Richie and all our friends and family.