Tuesday, 26 July 2011

Today is a gift

I have been trying not to worry about ‘what ifs’ but focus on ‘what is’. Particularly important whilst on suspension from the ‘trial drug’ Gilenya due to my neutrophils (Pacmans) being “decimated” and feeling worse than I have for a long time with the annoying return and/or increase of some of my MS symptoms. Thinking about ‘what is’ led me to hesitate at my new boyfriend’s recent question – incidentally, as a pretend grown up, I hate calling him my ‘boyfriend’ so will probably go with MyMan when referring to him in the future… Anyway, MyMan asked the other day “What do you see for us in the future?”

This was not a casual question nor was he worried I might be seeking more from the relationship than him. From the start, he has been talking about how we have many years to do things together and where we will be together in our 70s. I love this man!  I queried whether he meant the future future or just the immediate future.

Either way, his question made me think about a lovely quote I got from @lucyhunter on Twitter:
“Yesterday is history
Tomorrow is a mystery
But today… today is a gift.
That is why they call it…
the present”

Most of my recent todays have felt gift-like but have not been without their MS induced mood changes. Tears are not particularly attractive but at least I am lucky now to be with someone who seems able to take the ups and downs in his stride.

In a bad ‘what if’ downer, I partially dreaded meeting up with people I hadn’t seen for many years at an old friend’s 50th birthday celebrations this last weekend (and no, I am not 50 myself). It turned out to be a lovely occasion and my doubts were unnecessary. The ‘what is’ was so much better than my what ifs and I even told a couple of people there about my MS without any trouble.

Driving to the hospital this morning for the blood test which will prove whether or not recent resting and almost healthy eating – well, trying for three meals a day anyway – has been successful at replenishing  my pacmans, this song by The Wanted came on the radio.

And in case, like me, you are not an aficionado of The Wanted here are the Glad You Came lyrics

The lines that struck a particular chord were:
“all that counts
Is here and now”

My here and now presently is fine. I hope your today is a gift.

Thursday, 14 July 2011

30 lost blogs

What was I saying? Oh yes... no... it's gone!
So often I start a sentence and lose track of what I was saying within a few words. So much brilliance lost in the ether. Or rather in the scrambled eggs.

Sometimes I jot down thoughts which could become blog posts. Occasionally these are just titles. I don't always remember the thought process that was going to become the post connected with the title.

Here, in no particular order, is a list of some of the titles that may or may not become blog posts:
1.       I have searched all of yesterday's pockets (via @themanwhofell on Twitter)

2.       I spelt badly. Because I am a dyslexic insomniac (via @danielmaier on Twitter)

3.       Where's the Cheese?

4.       Without a Paddle

5.       So now you know

6.       Altered sensations

7.       Where to start?

8.       Is that a rhetorical question?

9.       It's not a rehearsal

10.   That's enough of that

11.   Rock bottom

12.   What a wit. What a half-wit

13.   Climbing up

14.   The truth, the whole truth and nothing but...

15.   Premeditated laziness

16.   Productive cough

17.   Suffer, endure, survive

18.   Gently insightful

19.   Are you in touch?

20.   Touch without the 't'

21.   Charge neutral

22.   A tick and a cross

23.   Where do I stand?

24.   Calling it

25.   Fuel conservation

26.   Dignity in living as well as dignity in death

27.   Fringe benefits

28.   Coming clean

29.   Out of the blue

30.   In the throes of passion

Ok, that's enough of that. If you want to read any of these posts just let me know. Now, what was I saying?

Saturday, 9 July 2011

What price well-being?

What price do you put on well-being? And what is the cost if that price is too high? The drugs I currently take, in monetary terms, cost well over the amount of my annual income. In fact just one of them costs more than my annual income. I have eight different regular meds. I don’t pay for any of them.

I am extremely grateful to have excellent access to medication. I am equally thankful I have a prescription exemption certificate. I was even glad to have the dreaded self-injection disease modifying treatment Rebif. That can’t have been cheap.

In April, I read an interesting post about the price of DMDs by Lisa Emrich on her blog Brass and Ivory: Life with MS and RA.

Yesterday, I was daunted when my MS Specialist Nurse told me the UK market price of the trial drug I have been on. 

Fingolimod, now called Gilenya, costs many thousands of pounds. It is a daily capsule and each week I am swallowing hugely more than my weekly income worth of it. The trial has ended.  I and fellow trial patients are now on an extension until NICE and the PCT decide how to prescribe Gilenya and who is eligible for it.

These will be difficult decisions and people’s health and well-being are involved.

I was devastated today to be told my blood count from yesterday’s test show my neutrophils are again severely depleted. I am suspended from the extension trial until those pesky pacmans return to ‘normal’ strength. I have another blood test in two weeks. I desperately hope my blood count allows me to resume taking Gilenya.

It is hideously expensive but the upset caused to me by being told I can’t take it cannot be priced. Without drugs like Gilenya, my well-being might be as crushed as my pacmans seem to be. You can’t buy well-being but I’m sure if the price of my meds is too high for my PCT to stand, the cost to me would be the loss of it.