What the heck?!

It's been a long time since I have blogged (two months). Apart from mini blogging on social network sites (and I don't think Twitter or Facebook status updates count as blog posts), I don't seem to have had time to write.

I haven't had time to read either. Or, if I have had time, I haven't had headspace. My brain is definitely scrambled eggs at the moment. I have a stack of books next to my bed that I would like to read. I'm playing a character who claims to love books and "live a life of the mind". I'm not really living that life. When I'm in a rehearsal period, I often find it hard to read anything other than my script. I don't like to have different stories and people in my head. More than ever now I have to try to absorb my character lines. I have to work hard to get the words into long-term memory. I'm living the payback for having previously found it easy to learn my lines. My MS has taken away that aptitude.

I have been horribly busy. Not just with the play, I know I have been doing too much. I have been ill – a spectacular hacking cough and endlessly snotty nose. I have had eyesight lapses. I have fallen over (several times). And I have still rehearsed, done simulated patient role-play jobs, produced my agency's newsletter, supported a friend through the break up with her boyfriend plus starting working on a new website and show reel not to mention rearranging all the furniture in my front room.

It's crazy I know but at a recent MS award ceremony I was described as nutty, I didn't win the award. But my friend and fellow MSer Jo did. So, what the heck?! This video seems appropriate - enjoy (and yes that is THE Kevin Kline narrating!):

Busy, busy, busy

OUCH!

There seem to be too many ouch points in my life with MS. Many of them are not physical pain. Recently there’s been

• the fish food fail - my flatmate was away and, in typical MS fashion, I put a tiny bit of feed in the lid of the fish food container and then, instead of tipping that little portion of granules in the lid held in my left hand into the tank, I tipped the whole container held in my right hand. It was horrible. There were fatalities. My flatmate was ostensibly forgiving;

• the falling fails – the most dramatic was one I tweeted about. Jemima and I fell in a tangle in the new venue for the show we were in. That was an ouch of physical pain. My bruises were spectacular like this on my thigh

• the oil cap drop – I was topping up the oil in my car and dropped the cap. It got caught somewhere in the engine and I couldn’t retrieve it. I was in danger of being late for a roleplay job so I drove the short distance to the venue. After the job which finished mid afternoon, I phoned the AA because I couldn’t risk driving further without an oil cap. The very nice man came, reassured me it was not the most stupid thing to have done, shone a torch, saw the oil cap and managed to reach the ledge it was balanced on and replaced it;

• the scripts that make no sense leading me to query is it my mind or is it poor writing?

I’m tired. I’m very tired. I look at my diary and it’s full. But only for a couple of weeks or is that three… I don’t know any more. I don’t quite know where I am or what I’m doing. I’m suffering.

And I miss MyMan. I miss that person to share my life with. He said on the phone recently, because we still talk (occasionally, not like the phone calls every evening after 8pm meds unless we were together)… Anyway he said: “that’s who I am”. He was talking about going to the gym and cycling and I’m not sure I gave that enough weight.

If that’s who he is, does that mean he’s found himself? And have I lost myself along the way. Maybe I have.

Today of all days is not a day to be lost. Today has been Yom Kippur, the Jewish Day of Atonement. In years gone past, I would have gone to the synagogue. We would all have gone. The whole family. We would all have fasted. The full 26 hours (yes, 26 not 24). Now there’s just me. My brother and sister both have families of their own. I’ve not eaten a meal today, just had fluids to take my meds with and stop MS collapse and I have done some contemplation.

But I do not class myself as a practising Jew nowadays. I probably haven’t done so for years. I am Jewish. I always will be. As a vegetarian I don’t have to consider whether or not I would stick to kashrut (best known as the Jewish dietary laws that include not eating pig, shellfish, any animal that doesn’t have cloven hooves, rodents, reptiles, amphibians, not mixing meat and fish nor meat and dairy at the same sitting – that is not kosher). I have never eaten bacon, pork, shrimp, prawns etc and, if I wasn’t vegetarian, I would be unlikely to start now.

I grew up in a kosher household – for the most part that is, from a food perspective, including having separate crockery, cutlery, saucepans, washing up bowls and tea towels for ‘meat’ and ‘milk/dairy’ or ‘parve’ (neutral) dishes. Meat was bought from a kosher butcher. Friday night was special every week with lighting of the candles, blessings and a meal. Similarly, most festivals were observed. You might say religiously.

However, my mother used to say you can fast anywhere and on this, the holiest of days in the Jewish calendar – the Sabbath of Sabbaths – she professed not to mind if we couldn’t be with her and my dad. I think she would have minded if I hadn’t observed Yom Kippur at all. Hadn’t gone to synagogue. Hadn’t said the Al Chet (confession of sins repeated several times throughout the Yom Kippur services). Hadn’t recited yizkor (a service of remembrance particularly for those for whom one or both parents have died). Today I didn’t. Ouch! That’s my conscience pricking me.

Where do I go from here?

One of the worst things to lose with the diminished cognition of my messy scrambled eggs is my sense of direction. I have toured in the UK for years, decades and was always good at navigation. My parents or more likely my dad taught me and my siblings how to map read. When on holiday, we would sometimes be entrusted with choosing the route to go – straightforward or picture-skew (picturesque is not a particularly English sounding word and skew is sometimes how our routes took us).

Now I know my thalamus may be shrinking - http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/1264 but it seems harsh that I cannot remember the simplest of what-should-be-familiar routes. Driving back from our friends’ house on Christmas Day I had to ask MyMan which way to go, repeatedly. I use my satnav more than anyone should. Or is this a case of me just being more normal now? When I bemoan my faulty memory, a friend tells me that before I was exceptional – knew too much, remembered everything (not true) – and now I am just like a normal person. If only. Or rather, I am glad ‘normal’ people do not have to endure what I go through.

Today I saw my GP. She is excellent. Great communication skills. Thorough and dependable, except she works part-time so it can be tricky getting an appointment. Today we went through my 3 point list – moving from Oxybutynin patches to pills, looking at dosage of anti-depressants, and reviewing my Gapapentin in light of a new annoying symptom (stinging soles of the feet).

She knows I have to write things down. Without making me feel awkward or stupid, she jotted down our plan of action – it was ‘ours’ not ‘hers’. The progression steps for each drug. The way forward. Except… I look at the list now and cannot see what I am supposed to be doing with my anti-depressants. I made the next appointment (three weeks’ time) whilst at the surgery as my GP suggested so I wouldn’t forget. I know we are going to review how things are going with the changes. I went to the pharmacy with the prescription and have new Oxybutynin tablets and new dosage Citalopram meds. I have the plan for the Oxybutynin. I have the suggestion for changing Gabapentin. But where are the instructions for the anti-depressants? I hope I am right in thinking I just jump from 20mg to 30mg daily.

Sometimes going on a new journey can be exciting. I quite like driving and not deciding in advance which way to turn. Making it up as you go along. At least I always used to know whether I would need to turn right or left to get near to where I wanted to be.

Nowadays, I have no idea. Everything seems to have gone skew-whiff and it's not pretty. Where do I go from here?

The C word

I don’t mind swearing. Some wonderful recent films have been loaded with fabulous swear words. If you haven’t seen ‘In the Loop’ or ‘In Bruges’ I strongly recommend both. Of course, you should avoid them if you have a problem with ‘bad’ language.

‘In Bruges’ is a particular favourite. Having already watched it at the cinema, I saw it on dvd when I was in hospital in 2009. My brother had lent me his portable dvd player. There was not a lot to do on neurology having just been diagnosed. Every so often doctors of all different levels would come to practise on me. Supposedly I was a particularly interesting case. I had just finished watching the film when one doctor came to ask me some cognition testing questions. You know the sort of thing.

What’s your name? What do an orange and an apple have in common? What’s the difference between a dwarf and a child? Hmmm, if you have seen ‘In Bruges’ you will understand how this last one led me into a rambling explanation as to why that is such an interesting question. It culminated in me recognising that the doctor probably didn’t want to hear about hit men in Belgium. My cognition was good enough to be able to give a more straightforward answer to do with people of restricted growth and young human beings.

I recently watched it again. MyMan hadn't seen it and I so wanted him to like it. Thankfully, he did. The film ends with mention of one word I definitely try not to use. Can you spot it here: 'In Bruges' last lines. It is still more than two months away but already it’s hard to avoid Christmas. Whoops! I used the C word.

In shops there are Christmas lights, Christmas cards, Christmas puddings. On TV there are Christmas ads. In households there are Christmas debates. The ones about who is going where and when. I have been spared most of these in recent years. Now I am laying low whilst MyMan debates and fumes about where his children will be on which day this Christmas and New Year. I will go along with whatever is agreed with his ex. I am avoiding use of a different C word.

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/)

Speedy virgin

For a mere UKP 7,111 you could buy a VRG1N

That’s a personalised number plate, of course, not an airline, financial product, holiday, hot air balloon, mobile phone, train or any other of the numerous pies Mr Branson probably has a finger in.

For nearly six times that price you could get V1RGO but that probably has a different appeal. Someone with more money than sense? Perhaps that’s why it’s so expensive.

The reason I’ve looked these up is that I thought VRG1N was the number plate on a Range Rover that sped past me on the motorway yesterday. It must have been a different variation of the word virgin. I don’t remember. (This is one of my most commonly used phrases.) Whatever the plate, it was a very distinctive personalised number.

It made me wonder why someone would pay to have a memorable (to someone who doesn’t have cognition problems) personalised number plate and then drive in a distinctive law breaking fashion. Yes, speeding is breaking the law. Yesterday, my cousin told me a way to dodge getting a fine and points on your licence if you are caught speeding. I don’t know if it is guaranteed to work and I’m not going to tell you what it is. And I’m not going to try it. Hopefully, I won’t need to.

I do a lot of driving. I try to be a careful driver and observe speed limits. I do have 3 points on my licence for a speeding offence. It was a Sunday. I was driving from the cemetery where we had just held a stone setting service at my father’s grave. I was going to the café where close family were gathering for refreshments. I must have been focusing on something other than the speed limit. The road was very wide and quiet. According to the (new) speed cam I broke the limit by 5 miles per hour.

I got the notification letter about this whilst I was in hospital for a few weeks due to the MS attack that led to dx. I didn’t care about the speeding offence. I had other things on my mind. I committed the offence on a Sunday. I went into hospital by ambulance on the Tuesday. I'd already been ill. Very ill. And nobody seemed to know why.

This is not an excuse for speeding. I accepted the fine and the points on my licence. I might have been able to pay a solicitor to negotiate my way out of it but that’s doubtful. I was in the wrong. It was my own fault. And I don’t have more money than sense. Or a personalised number plate.