This is how it is but that was how it was

I’m going to Huddersfield, West Yorkshire tomorrow. It’s a bit like going home. I lived in this bastion of Luddites’ uprising for many years. It features the location of the first home I ever owned. A wonderful stone built, end terrace house appropriately enough opposite a mill where they spun yarns – a bit like me. Though mine are less good at knitting into cardigans.

A great friend of mine still lives there. Not in my old house but in one of her own, a back-to-back in what some might think of as a slightly posher area of town. She doesn’t have a genuine Irish pub down the end of her street. Nor a mosque at the other end.

Many years ago we went away together on one of my very few holidays abroad. I was reminded today that I had promised to email my photos of it to her although I have already given her a little booklet with them all in. I had scanned the prints for an online site so I could create that booklet. They weren’t taken on a digital camera – it was that long ago.

I love old photos. They remind me of how things used to be. How I and my friends and family used to look. Things we used to do. Just this morning, I emailed a bad photo I had taken on my mobile to MyMan saying: “I still want a photo of you… and of us together.”

He doesn’t like having his photo taken. I don’t particularly like it either. Of course, some photos are different. They are a professional necessity. Despite this evidence from childhood, I am not really a poser – I’m the one in the middle!

At home I have a photo frame with a picture of me and two of my best friends in. The frame says Good Times all round the edge. That’s what photos are great for – reminding us of the good times. In the dark days and in the dimness of my diminishing memory I need those reminders.

I hope I can persuade friends to take some photos over the coming few days. Then, in years to come, I’ll be able to look back at them and say “This may be how it is, but that was how it was”. Meanwhile, tomorrow night me and my Huddersfield friend will be saying “those were the days my friend”. I don’t think we’ll be singing it. Even in Corfu we weren’t that drunk.

P.S. Hopefully, on Thursday I'll get my new blood test results. Equally hopefully there will be something to celebrate and I will be having to curtail my Yorkshire holiday to come back for the ECG testing that accompanies restarting wonder drug Gilenya. Cross your fingers for me please.

For the Longest Time

It’s that time of year again. I’m not there but I have hugely fond memories of the Edinburgh Festival Fringe. I went about six or seven times in consecutive years. Four of those years were with productions rather than just going to see other people’s shows.

When I was at university going to the Fringe was a major summer focus.

We were all-singing, all-dancing in the days before most companies were out on the streets publicising their shows. We were organised. One year I was the company administrator and I remember having to get people up after our late night binges to go out and drum up audiences. We had good audiences.

In 1985, the LA Times witnessed our routines in front of the Fringe Office. We got a big picture in their newspaper – it’s crumpled and blurred but you can still make out our striking T-shirts through the rain. 

I regret not being able to find my ZTC T-shirt now. I probably had cut off the sleeves from the start – that was the fashion then. I may have used it for painting in since. Perhaps it got splattered. I don’t know where it is. Not that I would wear it but it is a reminder of the songs we used to sing. Like For the Longest Time

We changed the lyrics to include show titles and venue names. The songs became our publicity vehicles. I still hum the tunes even if I don’t remember all the words we used.

Recently, at a friend’s 50^th birthday celebrations, another friend and I started singing some of our bastardised versions of the songs. It seems like the tunes will be in our heads for the longest time. I know we performed at a venue called Celtic Lodge perhaps there was one with chapel in its name which would have lead to a version of this song: Chapel of Love

My memory of recent events may be bad but some of my memories from years gone past are the sweetest things.

(NB Nothing to do with this but I quite like the video! - Sweetest Thing)

Five minutes early or ten minutes late

When I refer to my late mother it seems wrong. She was never late.

My mother was a stickler for punctuality. As a consequence she was usually early for things. So was my father. I think it was at my father’s funeral though it could have been hers that the congregation was gathered waiting for the coffin. Someone joked that my mother would have been appalled (and probably left) as the funeral was running late.

NB this was not an uncalled for joke. The congregation was filled with friends and family. I was chatting with them to keep spirits up even though mine were down. I like the idea that it was terribly wrong for either my mother or father to be late for their own funeral.

I have inherited their hatred of being late. Professionally, I tend to think I need to be five minutes early or I am ten minutes late. I recently read: “If you’re early you’re on time, if you’re on time you’re late, and if you’re late you’re left!” It was annoyingly written as “your” not “you’re” but, in work terms, I think the warning is good.

My BFF and her husband always used to be late for things. Recently she has been surprising me by arriving on time. Meanwhile I struggle more than I ever did to organise myself so that I am not in danger of being late.

I get terribly distracted. Despite having set a variety of alarms on my phone, e.g. ‘Get out of bed, washed, dressed’ ‘Get going now’ ‘LATE!!!’, I will delay because I am doing something. Then something else.

Yesterday MyMan arrived early. Well I thought it was early because it was sooner than I expected. However, I may have forgotten what time he was supposed to be coming. Or it might be that I had started watching a film that should have lasted my waiting time for him and then had been so often distracted I had to keep restarting the dvd. I loved that he wasn’t late. So often in the past boyfriends have disappointed me by their lack of punctuality..

Perhaps my desire not to be late is because I have little patience. Particularly as a patient. I may have blogged this before but I hate waiting. If I want something, I want it NOW! I don’t mean this in a petulant shopping way. It’s more that over the last two years I have had so many tests and often had to wait for the all important results which will determine diagnosis / treatment / progress. 

Tomorrow I will start waiting for my pacmans count results. I don’t expect them to arrive sooner than that. Blood test results are not like MyMan. They don’t usually turn up early. However, if they don’t come to me tomorrow they will be late. I hate lateness.

Keeping count

I’m the daughter of a mathematician. Both my brother and sister have superb mathematics A levels. My BFF is a maths specialist. What can I count on?

I can count but not rely on my pacmans. Today I got this text from my MS Specialist Nurse: Yr pacmans are improving well. But not up to restart levels. Stay of drug + can I do bloods on 9th august plse?

I had been thinking about going to Dublin to see my wonderful friend Nev next week. I hadn’t booked a flight yet but was going to look into it today, partly as a result of teasing and cajoling by MyMan on the phone last night. That’s a ‘you can’t count on me’ outcome.

I am counting down the days til the blood test. Then I’ll be counting down til the results but I can’t really count on when those will come given that I thought I would get today’s message last Friday.

The only thing we can truly count on is that we live and then we die. That’s not being morbid just a simple fact. And given that it is true, we should all make the living bit as wonderful as possible.

So I can’t book flights for Dublin but I can, as suggested by @Dr_Neil_ on Twitter, have “more rest, fine dining and afternoon trips to the cinema”.

He also pointed out the positivity of the observation my pacmans are improving which I overlooked in the annoyance that they’re not up to drug restart levels.

On 5 August Super 8 opens at the cinema (UK). Cowboys and Aliens is coming on 17^th. This week I’m going to see Beginners with my BFF, admittedly not in the afternoon but it’ll still be a cinema trip. I’m considering a matinee viewing of The Tree of Life. The cinema element of my Pacmans Regeneration Campaign will be on in earnest. You can count on that.

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 50^th 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.

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?

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.