Sunday, 29 May 2011

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:

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.

Monday, 23 May 2011

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.

Thursday, 19 May 2011


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.

Monday, 16 May 2011

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 cafĂ© 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.

Friday, 13 May 2011

Invisibility of disability

I am often told how well I look. Occasionally I am told how much better I look. I am never told how disabled I look.

None of these comments or lack of them is insulting or a problem. Except perhaps being told how much better I look. The implication is that I didn’t look well before. I didn’t but nobody likes being reminded.

I know most of the time my disability is invisible. That’s fine by me. On Wednesday night it was highly visible. In my own home. I was stuck on the settee. I knew my legs and arms worked. I was not in pain. My eyesight was okay. I just couldn’t move. This fatigue was worse than the other night when I was wearing the ECG monitor. However, it was entirely my own fault. I’d totally overdone things that day but I didn’t do one of the things I might have liked to do.

On 11 May, The Hardest Hit campaign took to the streets of central London. I wasn’t there.

Recognising that travelling to the capital city, let alone marching in it, was not necessarily a viable option for many people wishing to protest about cuts that badly affect people with disabilities, the campaign provided other ways to protest. See the website here: The Hardest Hit. And here is an article in a national newspaper: The Guardian article

There was some television coverage. It didn’t feel like there was a huge amount. Perhaps 5,000 people in attendance on a march is not so very many. Perhaps the issue was not deemed so very important. Perhaps the march was too well behaved. It appeared to me stuck at home that the invisibility of disability was being maintained.

Yesterday, no longer stuck on the settee, I wondered what other a- and i-bility words there are:- desirability, manageability, indivisibility, capability, sustainability…. Now, have I got the ability to put these words together with others to make a positive statement about living a life with disability?

Monday, 9 May 2011

Too tired to move

Fatigue is not just a fancy word for tiredness.
Fatigue is a symptom.

For the first year or so after dx, I was not good at dealing with fatigue. I wrote "When exhaustion hits, the fatigue is absolute and sometimes crying is the only relief / thing I can do." I rarely cry about it now but I do sit unable to make myself walk the few yards from my settee to the kitchen. I once felt the fatigue wash over me whilst stood at a supermarket check-out. I had to wait for it to pass. Thankfully, it was a minor fatigue sea otherwise I wouldn't have got my shopping home.

As I write this, I'm sat wired up to a portable ECG monitor. I need to take it off but I'm too tired to get up and do it. 

I am glad to be wearing the monitor because it means I have restarted the trial. I'm back on the (to me) miracle drug which has replaced my horrible self-injections of Rebif.

I hate failing but I have never been so happy to be deemed a failure as when I was told one of the reasons I could join the new DMD trial is because I am a clinical failure with Rebif. Not because I had a relapse but I did have continuing injection problems such as site reactions, pain and difficulty injecting.

This drug is a one-a-day capsule. Easy. I was unfortunate to start the trial but then immediately be hit by a horrendous viral infection which became a bronchial infection. Chest infections/problems are a known side effect of this new drug. I developed the problems far too quickly for them to be associated with the drug but severely enough that I had to suspend taking it.

Now I’m back on the drug and I’ll be able to continue as long as this ECG doesn’t show any problems. I’m lucky that the hospital didn’t make me stay in for the six hour monitoring. Protocol says that I have effectively had to start the trial again from the beginning. This would normally mean a long day at the hospital being tested, monitored and examined followed up by being sent home connected to a 24hr portable ECG monitor.

Fortunately, my blood pressure on previous monitoring has been excellent. All I have to do now is take the blasted monitor off but I’m too tired to move.

Friday, 6 May 2011

Patterns of life

I have never had a fixed pattern to my life. I didn’t do anything regularly. Okay, I brush my teeth every morning when I get up. That scuzzy unbrushed feel is horrible.

Oh and I went through a stage of early bird swimming every morning. That’s getting into a swimming pool at about 7am and swimming x number of lengths. It was a long time ago. I was younger then. I lived in Hull. These things are not in fact related.

Now I have to schedule things – daily, weekly, so many routines. Meds at 8am, 2pm, 8pm. Restock week’s meds docket on Sunday. Hang on, that’s all there is in my repeated iPhone alarms. Thank goodness for no longer injecting Rebif three times a week. Each injection involved a series of alarms – cool bag in freezer, cool bag out and put on injection site, inject, take paracetamol.

Even with the alarms I will still sometimes forget to do something. For example, I will stop the alarm and then not take the meds.

And then there is the four weekly collection of repeat prescriptions and the associated phone call to/from the pharmacy. The bi-weekly reflexology sessions – a pleasure but I still have to remember to go to them. The four-weekly massage – again a pleasure. The weekly visit to the Disabled Living gym on a Wednesday morning. All these have to be programmed into my phone and written in my filofax.

Also there are non routine things. If it’s not written down, in multiple places, I will forget to do it.

Every hospital appointment is diarised. Social events are programmed into my phone and alarms set. This is not always a guarantee that I will leave on time or, sometimes, even remember to go. Once I had been really looking forward to a meal with actor friends at a house I hadn’t been to before. The occasion was going to be such fun. We don’t often all get together for non-work reasons. It was written in my filofax and I had worked with the host the previous week and said how pleased I was to be going to it.

On the evening I got a phone call at about 7pm. “Where are you?” He thought I might be lost on the way. I was sat at home blissfully unaware. I got in my car, drove for an hour or so, didn’t get lost. They waited the main course for me. It’s great to have good, forgiving friends.

Last minute doesn’t throw me. I am used to it. One of the consistent patterns of my life has been not to have consistency.

It’s a little annoying when it’s sleep patterns that are not consistent. Or rather when the consistency is waking up at 2 or 3am. I broke the pattern last night by not going to bed until after 3am. It was possibly not the best thing to have done. Especially when I woke well before 8am ready to take my morning meds. About two hours before. And I still brushed my teeth first thing.

Are you a creature of habit?

Wednesday, 4 May 2011

Birds of a Feather

Since using a walking stick, I more often notice other people with sticks. It must be a little like if you are pregnant you have heightened awareness of things to do with pregnancy. Perhaps it is the human equivalent of birds of a feather flocking together.

Except at first I wasn’t ready to flock together with other stick users or MSers. I didn’t really accept that I belonged in that flock.

The fab physio from the local Physical Disability Service visited me at home, as they aim to do for all people newly diagnosed with a progressive neurological condition. She designed a personal exercise programme for me and over the course of two or three home visits gently encouraged my physical progress in the early days/weeks/months after I left hospital following dx. She also introduced me to the Disabled Living Services gym or more properly the Neuro Group session at the Integrated Sports and Leisure Centre.

It is not a glamorous gym. Functional and friendly but a bit downmarket. I love it.

One of the best things about going to the Neuro group session at the gym is the lack of pressure. The gym is not open to use by the general public during the group session times. There is no ‘work harder, more reps, more weight, faster’. What there is plenty of is nonintrusive encouragement, support and chat. And that comes from physios and fellow neuro users alike. There are people with sticks, walkers, wheelchairs and some with none of those things. We have different things in common and there are huge differences between us. All people in the group have some sort of neurological condition.

Today I went to the gym a bit later than usual and it was very quiet. When I arrived there were only a handful of other users. By the end of the normal group session time there was just me and a very latecomer. The latecomer’s wife asked the physio if I was ‘one of you’. We worked out that she was really asking if I was a physio/staff member or ‘a patient’.

We agreed I am the latter. I may spend a huge amount of time as a patient with doctors, nurses and other health workers but I don’t tend to think of myself as that and neither do most members of the neuro group. However, there are advantages to being a patient if it’s a friendly flock.

For a long time I had resisted being part of anything joined up with other MSers. I went on a Mindfulness Awareness course because it was a medical referral. I did meet and found I liked spending time with other people with neurological conditions because we could understand each other’s experiences in ways that people without such conditions might not.

These days I am happy to be a member of MSsy, a Young People with MS group. Yes, ‘young’ - me! Again, it was my disabled living physio who had suggested this new group to me. I like that I can now class myself as a friend of at least one member of the group. I would not have met her without MSsy.

I seem to be one of the birds of a feather.

Monday, 2 May 2011

What's in a name?

I am sure millions of people will now be aware of, tweeted/blogged about this Fox News fail:

We can all make mistakes but getting a name wrong, particularly on national news, is really not good. (That’s my understatement of the day.)

When interacting with someone I don’t really know or have just met, I like to check their name. If they don’t have a name badge on (and who does in real life as opposed to some work situations) I may ask what they are called. I hope using someone’s name shows the personal human interest that can make a big difference to how the other person feels. I expect companies invest in major training programmes to get their employees to use names to create that personal touch which is so important in good customer services.

Overuse of someone’s name is not so good. Especially if you get the name wrong.

I used to go out with somebody who seemed to have more names than is necessary for one person. His first name is Antony (yes, no ‘h’) and that’s what his mother calls him. The main abbreviation of this is Tony and that’s what most of his friends, including me, call him. Another abbreviation is Ant and that’s what at least one of his sisters calls him. But then he is also known as Bradley.

He got this name because he used to work in a travel call centre type job where nobody was allowed to use the same name as another operator. I think this was so that a customer could call back and say that they had been speaking to, for example, Tony and the centre would know who they meant.  There was already a Tony working there when he joined so Antony/Ant/Tony had to be Bradley and that’s what his friends from those days in his life know him as. He still uses Bradley for work purposes since leaving the call centre.

My mother was a doctor. Her professional name was her maiden name because she qualified as a doctor before marrying my father. This was useful because we could usually distinguish between phone calls for her depending on who the caller asked for. It didn’t matter whether they used the title Dr or Mrs.

She was on the lists for a couple of wine companies whose reps would bring wines to the house for private tastings hopefully leading to sales. I think she was initially targeted not just because my parents bought wine but because my mother was a doctor and doctors drink! We knew when it was a wine company phoning because of who they would ask for.

As an actor, I’m glad I’ve only got the one name. I’m lucky that when I joined Equity, having already been working for many years, I was able to keep my own name as my professional/stage name. Equity does not allow two members to have the same name. Perhaps that’s why so many actors end up working in call centres.

PS I’m not telling you my name but that’s another story.