Tuesday, 28 June 2011

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.)

Wednesday, 22 June 2011

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.

Thursday, 9 June 2011

Tempting fate

It’s June 9th. 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?

Thursday, 2 June 2011

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.