Sunday, February 08, 2009

It is a shocker knowing that I will not be getting better but I won't.

Sadly it will only get worse as this is a degenerative disease.

Was fortunate to not know that I had it for quite a few years, reckon since 1974, that’s when the first unexplainable thing happened.

Fell over a couple of times just after a flu jab at work, tests were done but no real answers, they thought epilepsy but apart from the couple of incidents nothing more happened.

Then fast forward to 1982 suddenly one day whilst running for a train heard a flapping noise and looked down it was my left foot.

Next day no problems and none until 1986 when had a few times when I could not put too much weight on my left foot, that too stopped as suddenly as it started.

Then on 1999 in winter ran after a tram and pulled my hamstring took ages to get better.

The next incident was in 2001 when I tripped and fell climbing out of a boat, and then in 2002 I jogged up to the print room at work and felt my hamstring go again.

The next year 2003 suddenly one day on a walk across town could hardly walk anymore stumbling all over the place, it happened once and stopped.

By 2004 every time we walked for more than an hour on the return journey my right foot would drag.

In the spring I got a new job which involved a walk of ten minutes to the tram stop and then another walk of ten minutes at the other end noticed that I was walking slower and slower on getting out of the tram by my work.

After awhile discovered a bus stopped closer to where we lived and stopped round the corner from my work this helped alot.

In 2005 started falling over, three times before I fell and broke the cartilage in my knee in the September.

Seemed to be recovering with phsyio until my birthday March 17 when had balance problems and started walking weirdly swinging my right leg out to the right.

As it transpired later these were the first clear signs of MS, that strange way of flinging the right leg outwards and wobbling.

In July all became clear with the diagnosis it was Primary Progressive MS.

We are both adjusting to a life that is dramatically different from my/our life before.

Now I can do nothing for myself, can't even move my toes anymore nor can I file my nails or pluck the hairs on my chin.

Can only move my arms and type with one finger can't right click with the mouse or multi task and type and answer the phone.

Richie does everything for me; he puts straps around me and gets me out of bed with a hoist.

He showers, dresses and helps me with everything.

Now he dresses the pressure sore which has me confined to bed till it heals.

Been in bed now since 21 August last year, feels like forever but I will not give up on my life and my life with Richie.

He is brilliant looks after me with such love.

Despite this horror, the MS that has come into our happy life and turned it all upside down we are still very happy together.

Difficult for us both, Richie works hard and has to cope with seeing me get worse and the frustration of not being able to do anything to change it.

And difficult for me in alot of pain all the time and being so dependant for everything.

I make the best of everything and I still have the best, my beautiful darling Richie who I love so very much, and who adores me. He fills my life with love.

Love him back and let him know how much everyday.

Compared to what life used to be like its horrible but we have our great love and our friends and neighbours.

We make the best of it and enjoy all we can.


Anonymous said...

Just keep on living each day like it is your last with each other and you will have no regrets.


Herrad said...

Hi Anne

Thanks for your comment.

Always aware each day could be the last.

We do take each day as it comes and enjoy it fully.


Jen said...

Sometimes I feel like I'm passively riding a train through hell, wondering how I ever got on it and why it won't stop. Other times I absolutely love my life.

This changes daily....

It's 1pm here, Herrad, and 60 degrees in February. Go figure....

steve said...

Your lives have been put into a blender. I recommend adding a couple shots of Tequila and making margaritas.

BR's skin burns so much that it's getting to the point where I can't directly touch him. He's lost so much weight that I no longer need to use the lift -- I can pick him up. This has oddly become my favorite part of the daily routine.

Keep touching, and hugging, and loving as long as you can.

Unknown said...

Darling Herrad - yes indeed, who would have ever put all those falls together and made a connection to the dormant MS and it blows me away...perhaps it is just as well you did not know earlier....either way this is where you are today.
Both richie and you make my heart sing...sweet laughter and peace to you both always and I would go with Steve's suggestion here..

mortonlake said...

ms.2 tiny little letters that have ruined so many takes away takes away mobility,it causes so much grief. but it cant take your love for each other away.and for that herrad,im happy for you.take care,keep fighting,lots of love and respect to you

~Erin~ said...

You and Richie are lucky to have one another. It's wonderful that he has stuck by your side through these rough times. Keep loving, keep living, and keep blogging, and we'll be here for support.


Richie said...

Time is best spent next to you.