Living in the present

I’m not a great one for posting inspirational/wise thoughts on Facebook but this picture was shared by a friend. It caught my eye and made me think:

I don’t want to die having never really lived. I am determined to enjoy my life no matter what it throws at me. I sometimes do things other people might think are a bit mad. I have been up in a hot air balloon, jumped out of an airplane in a fundraising tandem skydive, had a trial gliding lesson, been on a segway.

Apart from the hot air balloon ride, which was a birthday present from my BFF, all these have happened since DX. Sometimes it seems that MS has been a life sentence but also a gift. 

I think my next madness may be abseiling down the side of the hospital to raise money for the neurology department. I would never even consider doing that if it hadn’t been for this gift. That is living in the present.

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

These 'phew' days

It’s been hot recently. It’s October so we didn’t really expect it. Yes, there were weather forecasts for an Indian summer but, honestly, who totally trusts the weather forecasters? I can see how it is by looking out of the window. Predicting how it will be is a different matter and they sometimes get it wrong.

Phew! It’s been hot. Hot and sunny. Occasionally hot and humid. Here ends the weather forecast or whatever the opposite of forecast is because they do like telling us how it was as well as predicting how it will be.

I don’t think I have detrimental MS effects due to heat. I may not think so or rather remember so but in fact I do. I get tired. I dehydrate quicker which has very bad effects on me. The trouble is I love being out in sunshine.

The excellent Multiple Sclerosis Resource Centre http://www.msrc.co.uk/ put this on Twitter recently: @MSRC Heat Intolerance Page You may find this page of use over these 'phew' days. http://bit.ly/nyOuXk

I may be easily pleased but I liked the use of ‘phew’. I hope there will be more days of sunshine. After just a few my spirits feel lifted. Perhaps next year I’ll even get the chance to wear a bikini. No, maybe not. I’d need severe body shape changing first.

I cain't say No

Of course, I can say 'No' - see, I just said it. But I do seem to find it really hard to say no to many things. That dollop of ice cream. That glass of wine. That acting job on a date in a week with lots of other days already booked. That night with MyMan.

Those last two might be the worst. Fortunately MyMan is good at remembering I am not supposed to overdo things and puts his sensible head on so we don't see each other every day that we could. It would mean me driving extra distances, spending time with him when I could be resting alone. Fatigue is a real pain in the arse. So we skype or phone instead. But the acting jobs... oh, he has no control over those.

Today I accepted a job on a date I already had booked to do office cover at a firm of solicitors where I sometimes work. I would much rather not do the office job so it's good I could cancel it to have this roleplay instead. But, and it's a big But, the new job will involve driving 80 miles or so there and back, possibly staying over the night before, and this is in a week when I am already booked for three other days of roleplay jobs. None of them near to where I live.

This week I'm not working anywhere except at home. Next week the madness begins again. Multiple different roleplays and rehearsals for a piece I'll be performing in mid-October. Oh and that piece is performing on the Sunday of that week when I am now doing four days of wide flung roleplay jobs. I surely am that girl who just cain't say no.

And this one is just because Hugh Jackman can really sing! Oklahoma!

The times they are a-changin’

I was driving back from a job recently. Going to MyMan’s house not my own home and the not-uncommon thought popped into my head that I am not the same now as I used to be.

My life’s changed, but then of course it has, it changes every day as does everybody’s. But now, I don’t know. Now I’ve got a man in my life. I have a commitment to him, to his family, his children. It’s changed. I like the change and yet part of me thinks… ooh that’s different… Did I want this? Did I seek it? Well, no but I’ve got it.

And moving on from that thought came this tune - The times they are a-changin'

It’s a protest song and sometimes I want to protest against my internal changes.

On Twitter @JSCarroll quoted Lewis Carroll: “It’s no use going back to yesterday, because I was a different person then.”

I don’t want to go back to yesterday. I don’t even want to go back to before I knew I have MS let alone before I actually developed it.

However, I hate some of the changes. The uncertainties. Never knowing what symptoms the condition may throw at me.

I am used to uncertainty. It comes with the territory when you are an actor – never knowing what the next job will be, when it will come, where you will go. And now I have some uncertainties being in a new relationship. I don’t yet know MyMan’s world. I trust him and it but there are still many changes to take on board.

I am hugely lucky to have the life I have. I have friends, I have family, I have MyMan, I have MS. These are not incompatible. There are changes and we change to accommodate our changes.

I used to say to acting students “it’s not enough to want to be an actor. You have to need it. If you can see yourself being happy doing anything else, do that. This is not an easy option.” I chose it. I didn’t choose MS. I am trying to change to accommodate my different priorities. It’s not always easy but then who wants an easy life?

Under Pressure

I don't do things by half. It may be stubbornness or perversity but I tend to fight through beyond reasonableness. So yesterday when fatigue hit me with the force of a ten tonne truck I carried on driving. Fortunately it wasn't a real ten tonne truck. And I didn't have much choice. I was in the outside lane on a heavily congested bit of dual carriageway in London.

I do have a history of ignoring symptoms and getting on with things. For years prior to DX, I probably ignored fatigue, lapses in memory, bowel and bladder symptoms. Now I try not to. If something pops into my head, I know I have to act on it straight away otherwise it is lost. I telephone someone as soon as I think of them. Sometimes I make phone calls to myself to leave a message on my own answermachine. As for the bowel and bladder, if I need to go I need to go then!

Similarly, if I'm going to do something I'll go for it wholeheartedly. No holding back here. I might do things at the last minute but then the pressure of getting it done just spurs me on more.

It may not be sensible to cram in everything I do and I probably should be packing a bag right now instead of writing this. I didn't really need to remake my bed this morning. I could have waited before producing the newsletter for my agency. I still  have to learn the brief for next week's job and drive 200 miles... I expect a forthcoming Fatigue Course will show me the error of my ways. Certainly for the last few and next week, I am chock-a-block - work, medical and personal stuff. I will plough on through though, That's the way I am and this is how it is. Under Pressure.

“Reasons why the north will always be better than the south....”

I don’t drink beer but I do buy pints for friends and by ’eck it was cheap up north. As you can see from this photo MyMan posted on Facebook with the caption: “Reasons why the north will always be better than the south....”

We had a wonderful few days and the best news came on Thursday via a text from my MS nurse: 'Morning. Yr pacmans have returned. Hooray! 0.7. Text me when u can come + see us for ecg attachment.'

I was wired yesterday and now am detached and hoping the red splodges will have faded before tonight’s posh frock wearing for a friend’s 40th birthday party.

I’m back on Gilenya. I have wonderful MyMan who literally went the extra mile for me on our Yorkshire break. As he would say: ‘all is good’. And he’s a Yorkshire man.

This is my reason why the north is better than the south