Not making a meal of things

My brain is scrambled eggs, legs are jelly, spine is shredded wheat but put me next to the sea and I am a smorgasbord of tranquility, peace and hope.

My flatmate and I took advantage of sunshine at the weekend to drive south to Chesil Beach. There is no sand there but a huge expanse of small pebbles. It was sunny but quite windy so the sea had crashing waves at the shore. The sound was fabulous.

Walking on the shifting ground was hard work but worth it, particularly when we found a perfect cuttle fish, spider crab shell and, remarkably, the fresh leg of an edible crab.

I don't know how the cancer pagarus had lost its leg but it may have been in a predator attack. Let's face it, if you are called an edible crab, things are going to eat you.

“Hello, who are you?”
“I’m an edible crab”
munch munch munch

I think they should all be called a Cyril.

“Hello, who are you?”
“I’m a Cyril”
 That's less appetising. (Please accept my apologies if you are called Cyril.)

All good things come to those who wait

I am often impatient. If I want something or want to do something, I want it now. That’s not to say I can’t wait for things, I just don’t like to. I can be very patient with other people. It’s just me I give a hard time to.

Today I went to the gym. I have been terrifically busy lately. Pushing myself in work and in life generally. That kind of work/life balance is throwing my personal balance all over the place. My doctor told me it’s a shame my balance is so poor because I’m very strong. No kidding.

Today’s gym visit was unexpected. I had thought I would be at home waiting for a delivery and taking the opportunity to plough through some paperwork before a meeting with the woman from the bank this afternoon. I didn’t have to wait for the delivery - it came five minutes into the delivery slot.  So I was able to go to the Wednesday morning Neuro Group session at my Disabled Living gym. I could have stayed at home and pressed on with the admin but I hadn’t been to the gym for about a month, despite being tired, I pushed myself to go. The paperwork could wait.

I was a bit wobbly at the gym but got through most of my physio set routine and then I went into town for my meeting. I found my legs were barely willing to walk. Amongst other equipment at the gym, I use the treadmill, walking at a 50-minute mile pace for 6 minutes. I am supposed to do 5 minutes but I always push myself to do that extra minute. I don’t know why. On the street in town today I doubt I was even reaching that heady speed.

I had to force myself to stop and rest. To eat some lunch. To drink some water. To wait for enough energy to move again.

Back home, I plunged into the admin. I sorted out claim forms, updated my Spotlight CV and did a range of other bits and bobs. And now, despite being exhausted and in danger of slipping over an edge into fatigue, I can’t wait any longer. I’m writing this.

I have a new man in my life! It was unexpected. I wasn’t waiting for a man. I haven’t had a ‘boyfriend’ for many years but now I have. I met him and we fell for each other. He is utterly wonderful. I would write more but I am seeing double which is always a sign that I am overtired. All I would add is I wanted him, he wanted me and, whilst all good things may come to those who wait, sometimes when you want something you don’t have to wait at all. As a dear friend of mine would say: He is a VERY GOOD THING.

Tempting fate

It’s June 9^th. My late mother’s birthday and exactly two years since I was taken into hospital in an ambulance to be followed, about nine days later, by receiving DX.

I think it’s important to celebrate birthdays. When we do, we honour the mother who gave birth to us. Birthdays are a commemoration of their hard work and celebration of the life they gave us. As well as always doing this on my own birthday, I mentally mark my mum’s birthday each year. She died in April 2005 but today is her birthday.

My dad died on my youngest nephew’s birthday in 2008. I was there when he died. In some ways the anniversary of dad’s death has more significance to me than my mother’s. I’m not sure why.

Now I partly want to celebrate a personal anniversary. In the last two difficult years, I have had pseudoexacerbations of MS symptoms but I have not had another relapse. I’m tempting fate by saying that.

(for more info on relapses click here)

Perhaps unusually for an actor, I’m not particularly superstitious. But I do automatically display some aspects – saying ‘touch wood’ to ward off bad luck, being reluctant to talk about a job I’ve auditioned for until the outcome is known, saying ‘have a good one’ rather than ‘good luck’ to fellow actors (I rarely say the corny ‘break a leg’), sleeping with a script next to me so the lines can go into my head overnight. I don’t remember when I started doing the latter but that (along with carrying the script with me, even on a very long tour) seems to work for me.

Despite my poor memory, I do remember what happened on 9 June 2009. The shift in the pain, the phone call, the doctor telling me to dial 999, the paramedics checking it wasn’t my heart but saying I had to go to hospital, the ambulance trip, the woman in ER asking in accusing tones why I was there.

It took many tests to reach the DX. Each day I didn’t know what the next test would be. Friends would arrive to visit only for me to be whisked away for a mammogram, a CT scan, MRI. Then, after DX, there were still more tests – could I walk? could I wash myself? could I cook a mushroom omelette?!

I felt like I was at school but there were no prizes for passing a test. Mind you, I did get a lot of congratulations on the ward for completing the cooking test and they didn’t even have to eat the results.

So two years on, I am almost getting used to my RRMS. I still smile wryly at the registrar’s opinion that MS was a better condition to be diagnosed with than the other two possibilities - brain tumour or infection.

I am bemused by but grateful for friends with Primary Progressive MS saying they think it must be much worse living with the uncertainties of RRMS. It certainly is difficult not knowing how I will be day to day, hour to hour. And not knowing when I might have another relapse. Or how I will be during and after that relapse.

But I take my DMD. I strive to live healthily. I work. I sleep. I drink water. I eat (sometimes).

I have not had a relapse.

Let’s tempt fate and celebrate two years without relapse. Now, where’s a black cat when you need one?

Blurring the Boundaries

Many people, including me, use Twitter and/or Facebook, not to mention the other social networking sites. People, especially children, are warned to be wary of disclosing too much personal information to, let alone meeting with, anyone encountered through those sites partly because you can’t be sure who they are or what they want. Anyone can have a hidden identity online or set up their own boundaries over what people can see about them and what is private.

I have responsibility for three Twitter profiles, three Facebook, one MySpace, one LinkedIn....

Four are in my own real name, one is in my agency’s name, one is easily identifiable as me despite it using a nickname, one is in the name associated with this blog, the other is just ‘other’. Confused? I sometimes am.

I do not use my real name on this blog. I have already suffered some discrimination as an MSer. I don’t think it has professionally damaged me but it was bad enough that I consulted the MS specialist at the Disability Law Service.

It is nobody’s business but mine that I have MS and I don’t have to tell anyone if I don’t want to. I don’t usually tell people in my business because it is an incredibly subjective and judgemental one. I have a flexible boundary that means I’ve told friends and loved ones about my MS and some colleagues too but, for the most part, it’s private and personal to me.

On Twitter, people sometimes make incredibly personal disclosures or have public conversations with loved ones or enemies that are very revealing. Sometimes it’s like someone picking their nose whilst driving because they think that they’re in a box of their own, oblivious to the fact that others can see right into that ‘box’. You might feel guilty witnessing a private act but it’s their fault for doing it on full show.

Picking their nose is not a euphemism but there are lots of other private acts that take place in cars despite the fact the windows are not frosted or steamed up. Well not at first. I’ve watched Titanic, I know what can happen.

At least in a car with the windows wound up you can’t hear very much from the outside. The other day a couple had a very loud conversation on my upstairs neighbours’ balcony. I was sat outside, plainly visible, in the communal area at the back of the block of flats. I could hear every word they were saying. I really didn’t want to so I went inside but it puzzled me that people should ‘wash their dirty linen’ in public like that.

It’s the same with phone calls in public places. Except they are more frustrating for the inadvertent over-hearer. We only get to hear one side of the conversation.

A ‘private’ tweeted dialogue (through Direct Messages) is not as exciting as the public ones. I have to be careful not to tweet too opeinly using one of my Twitter profiles as it could be blurring my boundary with regards to my MS persona. This is especially confusing because some people are followers of more than one of my accounts. That is blurring the boundaries.

Let's talk poo (this is not going to be pretty)

(Beware may contain some language/subject matter you find uncomfortable) 

I’ve been feeling a bit shit recently. It has been MS Awareness Week and I’ve been all too aware of my MS.

‘Sugar and spice and all things nice’ might be what little girls are made of but what they excrete is an entirely different matter. There are some bodily functions people just don’t like to talk about. Yet we all experience them. Some of us in different ways.

I remember when my dad was in hospital he had bowel and bladder issues. He found it difficult to know how to say he needed to use the commode. He would forget nurses had fitted a catheter and certainly couldn’t remember the word for it but at least he knew how to say he needed to pee. Every time, I would have to gently remind him that he could just go. It was harder when he needed to poo. He couldn’t find the words. He would often soil himself. I remember once he was in bed and got very distressed but couldn’t tell me why. Eventually he was saying ‘oh I’m going to be very bad’. Unfortunately it was only then I understood the difficulty. I don’t call it being bad but he did shit in the bed. I can completely empathise with his distress.

In my last post I mentioned that one of my MS nurses had wiped my bum when I was in hospital. I had just been transferred to the Neurology ward. I couldn’t walk. I needed to go to the toilet. It was urgent. The nurse got me into a chair and wheeled me the few yards (it was a great room with just four beds and its own wet room). We got into the bathroom but not to the toilet in time. It was messy.

Almost any list of common MS symptoms will mention these:

Bladder and Bowel including: frequency; urgency; retention; constipation; incontinence. (source: MSRC.co.uk)

My MS seems to encompass most of these dubious delights.

I suppose I always knew having a weak bladder is no laughing matter (ha!) but when it’s necessary to have a continence advisory nurse (note to self: not an incontinence nurse) you know you’ve plunged a new level. When you can’t tell if what you need is to pee or poo you are in trouble.

Recently I had to pee into a little plastic jar. Twice on the same day. First thing in the morning this was not pleasant but a necessary part of the study looking at the effects of ‘drink on physical and cognitive performance, balance and perceptions of fatigue and effort in people with multiple sclerosis’. Now that’s a mouthful of a research study.

The second urine sample I had to provide was to be given near the end of the exhausting two and a half hour session I endured. I was fatigued, My brain was well and truly scrambled. In the last (walking) test, I was reduced to tears. I hadn’t been allowed to drink anything. 

The next session will afford me the opportunity to drink whilst doing the range of cognition and physical exercises. I expect my results will be better. It’s pretty well known that we function better when we are well hydrated but this study is to establish the evidence for this.

I was worried that I wouldn’t be able to provide more pee. Then I was worried that what I needed to do was poo. I hate hate hate these lavatorial dilemmas. Fortunately, I managed to do what was necessary and didn’t do what wasn’t. Unfortunately, I had to go straight from the research study session to a voice job in a different part of town. I still needed to do a ‘job’ of my own.

I am not often a victim of faecal incontinence. I usually know where toilets are. I normally get to one in time.

You’ll be glad to know this was true of that day too. I certainly was. When I got to the toilet it was very much only just in time. It’s amazing how the body’s functions can be prodigious on a simple breakfast of a banana.

Sorry if you did find this uncomfortable reading (I warned you) and, unlike my last post, not warm and fluffy even if poo sometimes is! 
Excuse me now I've just got to nip to the toilet.

 
(source: http://funniez.net/)

Top 10 unsung heroes*

I’m not much of a singer. I can perform a song and often have. Not drunk in a bar but as an actor in musical shows. I don’t do karaoke, for me singing in public is a paid activity, if anyone will pay me to do it. I once did a great public consultation street theatre exercise (paid) part of which involved me busking in the street. I don’t really play a musical instrument or, as I’ve said, sing but I played requests – CDs on a ghetto blaster. And I danced. It bemused passers by but was a good discussion starting point.

I often sing around the flat and today I would like to sing the praises of some of the people who have had a real impact on my life. My personal heroes. To save everyone’s blushes, mostly mine, I won’t sing musically out loud and will keep them almost anonymous, but I want to mention a few wonderful people.

In no particular order.

My mum – she was a remarkable woman, hard working, professional, intelligent, occasionally scary! She spent a long time campaigning for the release of Soviet Jewry or refusniks and, in her latter years, worked for the Medical Foundation for Victims of Torture. She would have been 85 on 9 June.

And my dad – as with my mum, intelligent, almost unbearably so, and wise in so many ways. After my mum died, my dad was a very important part of my life and vice versa. I love and miss them both. I am glad they have not had to live through the last couple of years since my dx.

My BFF – she is nearly indispensable to me and unbelievably helpful in so many selfless ways.

My sister – a mainstay in my life, particularly since our mum died, even more so when dad became ill then died and since I went into hospital in 2009.

My agent – she has been a friend for a long time and I am lucky to know her and her family well. Her home is a home from home to me as I have stayed there often over the years. She surprised me by visiting (with a friend) when I was in hospital, a four hundred mile round trip.

My flatmate – he has proved himself dependable and considerate.

Jax (nearly her real name) – a friend from university days who inspires me often and makes me laugh every time we talk

Nev (not his real name) – we are in touch less often than I would like but, in years gone by, he was a faithful friend and, if needed, we would drive to the other end of the country at the drop of a hat for each other. He doesn’t live in the same country as me now.

Tanzy – I think one of the first things I might have told her was that she was miscast in a show I was directing. Unusually, I hadn’t been involved in the casting or, indeed, in the choice of play but it went fine and I learnt a lot directing it and her. In the years since and, especially recently, she has been a true friend.

My MS Specialist Nurses – there have actually been four of these but *Top 13 Unsung Heroes doesn’t sound as good as Top 10. Each has been supportive, informative and invaluable in coming to terms with and managing my MS. One of them even wiped my bum when I was incapable in hospital.

I thank all of my 'unsung heroes', including the ones I haven't sung about today. Normal, less flattering service, will be resumed shortly.

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.