Friday, June 28, 2013

The last Friday of June.

I woke this morning after a decent nights sleep and realised that it was Friday again and the day for the Methotrexate. The days are flying by at a rate of knots at the moment, I just can,t believe that on Monday it will be two years since I started writing this journal. In all that time I have enjoyed every moment of it so today, seeing as it is a day of rest and there is not anything different to write about I Thought I would add some of the pieces that I wrote in the first few months .

July 1st 2011/ Here is the total piece of my first Page

The Start of July 2011

Well here we are, starting July, does not seem like it is 6 weeks since I was released home from QA, Hospital at Cosham and 9 weeks since being admitted to Southampton General Hospital and being diagnosed with this crap condition.

Getting to Grips with Dermatomyositis is hard, having to rely on other people to help me do everyday tasks is what I find most difficult to come to terms with, My thanks really do go out to all the support and help I am receiving from family and friends.

My Dysphagia ( difficulty with swallowing) has not really improved much at this time although it is early days in the treatment so really cant expect to much at this moment in time, so puree meals are still the order of the day. Muscle weakness and immobility are still there although we are now getting into a treatment plan with the medication so hopefully we will see some improvement in the weeks ahead.

I have this week Reduced my Steroid,s from 40mg per day to 30mg per day ( bearing in mind 8 weeks ago I was on 60mg per day) and am starting to increase the Methotrexate fro 7.5mg per week to 15mg per week, this being phased in over a period of 6 weeks.

Because of the Metotrexate I have to have blood tests every week to keep a check on side effects and infections.

My Best Poem so far on the 27th July 2011

It Has To Be Said !!!

Hi everyone, Wednesday again and to be truthful it has been a good day so far,  no visitors today(apart from the carer), so a quiet day today. Phoned Portsmouth City Council to let them know about changes to my Pension Credit and Attendance Allowance, as it could affect my Council tax benefit so apart from that not done a lot apart watch a bit of TV and do a bit of pottering around the house.

Had a good night last night, slept pretty well but the shoulder has been a bit painful and sore today, but not as bad as it has been so not to bothered about that at the moment, did a nice puree Chicken Curry for lunch today, still have trouble getting the rice at the right consistency, added a little cream to it today that helped so that is probably the way to go next time.  for tea today it will be salmon and Cheesy mash potato, with a white sauce.

!!! Well It Has To Be Said !!!

It has to be said.
I cant hide it no more.
To puree my food.
Is becoming a bore.

What wouldn't I give.
For a Burger and Chips.
To have something solid.
To pass through my lips.

It isn,t the fact.
That it has got no taste.
That the texture is smooth.
Like pate or paste.

It's the after effect.
That don't cheer me up.
Its that horrible thought.
Of the words "Washing Up".

Now where it all comes from.
Nobody knows.
But the Washing up starts.
And it grows and it grows.

With blenders and dishes,mugs,cups and plate,s.
Jugs, whisk,s and spoons.
And the odd garden gate.

Well must make a start.
Get the washing up done.
I don,t want to do it.
It isn't much fun.

But one things for sure.
As i stand at the sink.
I will have to do it all again tomorrow """ Bummer"""

Well thats today over and done with, all in all a good positive day, until tomorrow, Bye

And on the 28th July 2011 the first illustrations appeared.

A Positive Posting on August the 26th 2011
Had the assessment from the Adult social care team on Monday, so waiting to hear the outcome from that but in the meantime they are continuing with the morning carer from the enablement team from Queen Alexandra Hospital.

Got a Tax Rebate
So in reflection of the week it has been an interesting week and as I said at the start of this posting many positives with a few negatives thrown in but all in all I am:-

(1) reducing the Prednisolone,
(2) staying at 15 mg Methotrexate per week on a friday,
(3) reducing blood test from weekly to fortnightly,
(4) sleeping slightly better, and breathing easier with the cooler weather,
(5) and to round it off I am  £20.00 better off with a Tax Rebate. !!!!!!!!! Yahoooooo !!!!!!!!

As I sit here the sun has come out and lots of blue sky around, so looks like it might be getting better weather for the Bank Holiday Weekend, I had a friend come in and see me today for an hour and he was saying that the traffic was bad coming into Portsmouth, probably the holiday makers arriving for the long weekend.

On Sunday January 8th 2012 A Poetic breakthrough

Poetry in Motion ?

I Know I've overdone it, 
When I ache from feet to head
and all I want to do all day
is stay here in my bed.

But I know, that if I do that.
Then Myositis, it has won.
So I jump right out, of my snug bed
And land up on my bum.

It really is not funny.
these trials we have to bare.
But I should have remembered
when I got up, that last night........

"I Moved the Chair"

And back to the Present

Well there we are a little trip back into the early days of my Daily journal, and on monday we go into the third year, what a treat for you all to look forward to, but there are plans to change the format slightly but the main thread of my living with dermatomyositis will remain, so until tomorrow I will say tatty bye.

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