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

Talking to Myself

I’ve been feeling a bit sorry for myself. What a waste of a sunny day. I used to sing this Carpenters song at castings (when asked for a song not just for the hell of it because that would be stupid):

Rain Days and Mondays

Now, of course, I can’t run and find the one who loves me, because He doesn’t. Funny that. Not. Especially when I look back at my blog post from September last year: Maybe MS Truth: I cain't say No

And it’s not raining or Monday today. However, I often talk to myself. And I sometimes feel old. I talk to objects and animals too. Sometimes I talk to them to disguise that I’m really talking to myself. Oh dear, perhaps I have really gone mad. Except I think I’ve always done that talking to myself/objects/animals thing.

I don’t think it’s particularly self-motivational though that can be a side effect. I was trying to describe some of my MS symptoms to a friend recently and I kept confusing the words ‘symptoms’ and ‘side effects’. Sometimes it’s hard to know which is which when you take lots of drugs. Perhaps this blog, this form of talking to myself, is a symptom of my MS. I didn’t write it before. Perhaps it’s a side effect of the condition as without MS it would have no rhyme nor reason.

Sometimes I talk to myself in public. I probably shouldn't. Sometimes I do it in public on social networking sites even though people wouldn't necessarily know. Sometimes I forget it's effectively myself I'm talking to when I retweet or comment on status update posts - a by-product of having more than one Twitter and Facebook identity. I'll try not to comment on this blog post or re-tweet the post announcing it on Twitter using one of my other Twitter identities although, of course, you are welcome to do so. Confused? Think how I feel!

Just to be clear – when Talking to Myself, I do not think of this Eminem song even though some of the lyrics might seem apt: Eminem Feat. Kobe - Talkin' 2 Myself lyrics

You’re lying to yourself, you’re slowly dying, you’re denying
Your health is declining with your self esteem, you’re crying out for help

Right enough of this – the sun is shining and I need to get out. Yesterday I watched The Artist at the cinema. It was beautiful and moving. Today I might go to see The Best Exotic Marigold Hotel. Or Rubber Gloves as I’ve come to think of it. Get those marigolds on.

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?

Return of the Waterproof Mascara

I’ve been away. Away from this blog, away from an easy pattern of sleeping in my own bed each night, away from peace. If anyone knows where my joy has gone, I would like it back please. Some things are back already. I am here. Not for long but here today. So is the waterproof mascara.

As comebacks go, it has not been eagerly awaited. There has not been the joy of anticipation reserved for birthdays and other celebrations. Tears roll down my face with the unpredictability of an erratic bus service and woe betide anyone who asks me how I am. Fragile is my common answer. Accompanied by unexpected water falling from my eyes. I don’t wear much make-up on a daily basis but I hate to go out without mascara. Recently I have made sure it is the waterproof stuff otherwise I may end up sporting the panda eye look.

Often there is no ostensible cause for the tears. Sometimes they are justified. The other day I was staying in a horrible hotel. It was more like a hostel and I was miserable. I cried.

I got over it. MyMan cheered me up on the phone. I had a job to do the next day so I pulled myself together and did the best I could. The best was pretty damn good. I was exhausted by the end of the day and unbelievably happy to back in my own bed. I have had three consecutive nights at home. I have been able to bag up some things to take to the charity shop. Getting rid of things I don’t use/want/need is always good. I wish it was that easy to get rid of the MS, get rid of the tears.

Today I am fine. I will still wear waterproof mascara though. I never know what may happen to trigger the MS mood changes that blight me. Now, excuse me whilst I go and put on some waterproof mascara before going out to face the world. I will be back.

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/)

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.

Well coordinated

Today (now yesterday) my masseuse commented that my knickers matched my walking stick. Let me explain.

a) I have had regular massages since suffering a work related shoulder injury many years ago. I wrenched something. It hurt. A lot.

b) Unusually for me, these particular knickers are patterned with red cherries.

c) I own a variety of patterned walking sticks. This is one of two recent bargain buys from Timpsons. It is bizarre how excited I now get about buying new walking sticks. Who’d have thought someone my age would get so much pleasure from a pretty stick! Not a euphemism.

I often coordinate the colours of my clothing and, to a certain extent, accessories – earrings, bags, walking sticks. This probably makes me sound far more fashion conscious than I could ever pretend to be.

Loss of coordination was one of the first symptoms to affect me when I suffered the MS relapse that led to my diagnosis. I don’t remember what I was wearing when I went into hospital (in an ambulance) but I bet it wasn’t in any way coordinated. I do remember I couldn’t write properly with my left hand. I am left hand dominant. Left-handed to you and me.

I had also started dropping things. I was already using a stick due to footdrop, balance and coordination difficulties when walking - and when standing or bending down. Sitting seemed to be ok but that doesn’t take a huge amount of coordination.

None of this is unusual for someone with MS but when you don’t know you have MS and these difficulties are accompanied by visual disturbances, extreme tiredness (fatigue), strange numbness/tingling in limbs and crushing pain round your midriff then the loss of coordination is disturbing. It was the midriff pain that landed me in hospital, It moved up to my chest and the out of hours doctor told me I had to phone 999. Best thing I did. Once in hospital I had the raft of tests that led to my diagnosis.

On diagnosis, I was told by the hospital MS Specialist Nurse that the crushing midriff pain, which felt like a far-too-tight twisting belt, is known as the MS Hug. I think of a hug as a pleasant thing. This wasn’t, and still isn’t, at all pleasant.

One of the problems with all my symptoms is that they didn’t/don’t feel coordinated. To a lay person like me, it’s like having a whole jumble of stuff wrong. So yesterday it was good to be told that one part of me was coordinated. My knickers matched my walking stick. I was well coordinated. Very important, I feel, to look your best... in case you get run over by a bus.