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.

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.

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?

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.

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?

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.

What's in a name?

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

Oh Fox, you say Obama, I say Osama

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.