Patterns in the sand

I have regular pattern in my life where there was none before. Meds at 8am, 2pm and 8pm. And irregular pattern but pattern nonetheless. Hospital visits with their accompanying blood tests. Drink lots of water, warm up your arms, chat to the nurse to distract your veins so they don’t notice the needle coming to suck out the blood. A week later I still sport a large dark bruise on one arm from the first, failed, attempt to get blood out of me during a clinic visit.

I recently got the results of that test. Pacmans have dropped again. Bugger. I will need to be retested towards the end of the month. Four weeks after this last test. This is a pattern I could well do without.

Not long after I was first diagnosed, I wanted a picture of my brain. The MRI would have allowed me to see the pattern of my lesions. I could have developed a performance piece. Dancers would have skirted round fixed white points. Nerve impulses zooming round my body, their progress stilted and confused by the myelin scarring. I don’t know the patterns. The sands seem to shift with the slightest breeze.

I used to be fine with the vagaries of my life. Never knowing what the next job would be. Where I would have to go. Recently it has been harder to deal with the irregularity. There have been late changes to jobs that were booked but now disappear in the gust of funding scarcity. Whilst there has always been unpredictability, it used to be relatively rare for a job, once booked, to disappear completely.

The patterns in the sand may shift but surely there should always be the same amount of sand there? Added to perhaps but not taken away. Whilst pondering this complication in my not-so-simple life, I remembered the beauty of sand art. At this time of year, when the shofar is sounded in the synagogue, the music in this piece is particularly apt – enjoy: http://youtu.be/U8fl3OokqWk

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.

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.

Discombobulated

It’s been an odd day. Or perhaps just a discombobulating start to the day. I like the word discombobulated. Try saying it out loud to get the full effect of its loveliness.

The confusion started at about 6am. I suppose waking that early is not hugely unusual for me. In fact I often wake much earlier. 2, 3 and 4am are familiar friends. Unless I have a job that day, getting up and brushing my teeth at 6am is unusual. Getting up, brushing my teeth and pottering around then going back to bed was odd.

Getting up, brushing my teeth, pottering around then going back to bed and falling deep asleep was plain weird. Especially when I heard my meds alarm at 8am, Extremely tired, I put it on snooze three times before obeying and taking my four morning drugs – in order of pill size just for the fun of it. Then I fell asleep again. This is not my normal behaviour.

I vaguely heard my iPhone ‘get going now’ alarm to set off for a mid-morning hospital appointment. I ignored it. When I suddenly woke 10 or 15 minutes later I had no time to shower, breakfast, drink water. I just got dressed and set off for the hospital. Phew! I was going to make it in time.

Then when I got to the hospital, the car park was full. Full with a queue to get in. After a few minutes I gave up on the queue and drove round to the main hospital car park. There was no problem parking there. I even found a blue badge parking bay. Just as well because it is a really long walk from this car park to the other building in the hospital where the neurology department is based. Lots of long corridors. Lifts up, lifts down. It’s not a straight forward route. And when I say 'walk' in my case I mean stumble, shuffle, stagger, weave.

No wonder I was discombobulated.

I hadn’t really thought about this appointment. I suppose I knew that, if I was in neurology, they would need blood and, sure enough, one of the first things my MS Specialist Nurse said was that I needed a blood test. I told her I would have to drink more water first.

It’s really hard to get blood out of me. My veins collapse and I need to be well hydrated and warm to stand any chance of success. I hadn’t drunk anything (apart from a little water to swallow my morning meds) and, because it was sunny, I was wearing a little sleeveless top and thin jacket.

My blood pressure was fine. The nurse took it at least three times. She told me the oddities about what was happening now the drug (Fingolimod) has been licensed before the trial has even completed. Then I talked with the doctor whilst being supplied with more water to hydate me to the max before the blood taking.

My discombobulation was not alleviated by the doctor asking several ‘when…’ questions. I don’t remember when things have happened. Fortunately, she had the bulging folder of notes which is ‘me’. Just me on this drug trial. I dread to think how many trees have gone into the other huge folders of medical notes held by the various hospitals and doctors I have seen over the last couple of years. A small forest’s worth I expect.

Anyway, discombobulation subsided as my MS nurse did her usual chatting to me whilst the phlebotomist took blood. Success. Blood taken, brain connected. And my MS nurse took me through a secret, staff only, route to get out of the hospital.

I was combobulated again.

Here you come again

I was struck by this song on the radio yesterday. I hadn’t heard it for years. Whilst I know many people have sung it, somehow the Dolly Parton version is the one that sticks with me.

Here you come again

It’s not the message of the emotional impact one person can have over another that connected with me but the refrain: “here you come again and here I go”.

I quite often feel like that.

I had a sudden mood drop this afternoon. I don’t know why. The unpredictability of my condition is often bewildering but it’s a long time since I’ve felt so inexplicably blue.

I had done a roleplay job today. I was playing a positive, upbeat teacher. The roleplay consists of a 20 minute interview with the person being assessed who, for the meeting, is in the position of a new headteacher. I do the roleplay four times a day with different applicants. They are all applying to become trainee headteachers, working towards the mandatory National Professional Qualification for Headteachers.

For the last one, as usual, I started the meeting smiling and enthusiastic. By the end I was crushed. The assessor noted that I was a different person going out than the one who had come in and recognised that this was in reaction to how the meeting had been conducted. It was obvious why my mood had changed. What was strange was that whilst the ‘headteacher’ had probably seen the mood change, he persisted in adopting a telling, unnecessarily hyper-critical stance that left my poor character demoralised and confused. The assessor almost certainly found a wide range of development points to feed back to the prospective trainee headteacher.

If I knew what brought on my mood drop in real life perhaps I could prevent it happening.

However, it may well be that this email message from the MS Specialist Trials Nurse initiated the change:

“Your blood results appeared today. Unfortunatley they only processed the electrolyte part of the test not the full blood count. I assume that this is because it took longer than expected to get to the lab due to Easter. (Even though I checked and they said that there was a normal service good friday and sat - humph!!)

“So the bottom line is I need to check again. Because of all the festivities this week I would rather wait until early next week….

“…Sorry to ask you again but I need to know that those pesky lymphocytes are behaving.”

Yes, there is a typo and lack of capitalisation. I can rise above that. But still not to know if my Pacmans are up to scratch and to need another blood test makes me sigh.

My mood drop didn’t last too long but, when it came, I was gone.

I am back and will write again when I’m not so tired. Oooh, fatigue…. that’s a whole other story!

Borderline normal

I have sort of become used to blood tests. It seems that whenever I go to the hospital they take blood, and I go often. I sometimes also have to have blood tests at my GP surgery to supplement the ones at the hospital. I dread bumping into one of the MS Specialist Nurses in the supermarket in case they say ‘Oh, by the way, we just need some more blood’ as I head for the check-out.

I recently started taking part in a research study for a new medicine. More blood tests.

Yesterday I was phoned by one of the study doctors to say I needed to come in to the hospital for another blood test. I was only there last week. She had got the blood test results. She said there was nothing for me to worry about. She was the one doing the worrying. She said it was her job to worry and repeated, several times, that I didn’t have to worry. She did. I didn’t – I’m obedient like that.

I dutifully went to the hospital this afternoon for my blood test. I asked the doctor why they needed another blood test, what was wrong with my blood count from last week’s? He explained about my white blood cells. I nearly understood it all.

The MS Trials Nurse told me that I had only been ‘borderline normal’ at the start of the study. Now there has been a drop in one element of my white blood cell count. I need more neutrophils. Put very simply, mainly because that’s how I understand it, neutrophils gobble up infections. I think they are like Pacmans scooting round the maze of the body. I’ve had a virus – flu which turned into a bacterial infection. My little Pacmans have had their work cut out and are depleted in numbers.

I currently aspire to be borderline normal again. Hopefully I’ll exceed that and become normal. I suspect friends may say that’s impossible. We can all dream, can’t we?