20. ‘Frequency and urgency’

‘Hmm … frequency and urgency …’ my lovely MS nurse said knowingly when I told her about my latest problem.

She explained that it was probably down to my brain getting the signals all mixed up again.

I imagined it to be like one of those old fashioned telephone exchanges up there. You know, when telephone exchanges were manned by glamorous girls wearing pencil skirts and red lipstick, with headsets, who took incoming calls and directed them on to their destination by switching plugs with wires attached on a big board … except the glamorous-telephone-exchange-girls in my brain have been on the gin at lunchtime and keep sticking the plugs in the wrong holes.

And so my bladder seems to have shrunk to the size of a baked bean.

… about 10 minutes after I have pee’d I feel like I need to pee again. And so I go to pee again. Except when I try to pee again, I don’t really need to pee again and cannot pee again. Probably because the frequency with which I feel I need to pee does not match the frequency with which the human body is required to pee unless one has drunk a whole swimming pool.

Then sometimes, when I do actually need to pee, I go from needing to pee at an acceptable and infact normal level of urgency to incredibly urgent in a very short space of time. Indeed a space of time far shorter that is sometimes convenient given the demands of everyday life and a job which requires me not to move from the courtroom for long periods of time.

It seems that this is known as ‘frequency and urgency’ in the business.

It was suggested that after I have pee’d I hang around a little in the cubicle to give the now tipsy girls in the telephone exchange time to catch up. In other words stand up for about a minute before sitting down again and having another go …

‘Hello caller, how can I direct your call … Hic?’

‘Hello glamorous-telephone-exchange-girl, it’s the bladder calling, please can you redirect me to the brain?’

‘Why certainly bladder, re-directing you ….’

*Cue much to-do in the telephone exchange as the glamorous-telephone-exchange-girl fumbles around with the plug from the bladder, wishing that she’d had a sandwich in preference to that liquid lunch whilst I stand self consciously in the cubicle, willing the seconds to pass until eventually (about a minute later) the call is connected and the message gets through that I need to go again ….

It was also suggested to me that I may benefit from pelvic floor exercises – the mere mention of which instills a sense of unease into most women …
I had a rough idea what they involved but wasn’t sure. So I did what any girl would do in this situation and asked my mum ….. who gave me a detailed run down over afternoon tea.

And so now I am proficient in both pelvic floor exercises and killing 60 seconds in a toilet cubicle …

I just wish someone would give those telephone exchange girls a talking to … although it is arguably never too early for a G&T ….

19. Forecast …. rain/sun/cloud/snow

The other day I read this on twitter:

‘If you want to accept your MS, visit a lung cancer patient. 97% fatal 6 months – 5 years. They’d trade places in a minute.’

This had been written by someone with MS but luckily it wasn’t directed at me. I say luckily because if it had I would have had to reply. With a number of expletives. Because it made me mad. And upset.

Ok, so MS isn’t going to kill me. But it is, in its own way, a life sentence.

The worst part by far is the not knowing, the uncertainty, the fact that even the doctors can’t tell me how it is going to affect my life. I may be fine for the next 10 years. But then I may have a series of relapses and find my mobility severely restricted. I may wake up tomorrow with new symptoms. Problems with vision, speech, balance, bladder, tremors, pain. Or I may not. Because that is the problem with MS. There is simply no way of knowing what is going to happen. And that uncertainty is, in some ways, worse than a prognosis that is poor, but definite.

The best way I can describe it is it’s like having a grey cloud hanging over my head – at the moment I am doing ok, things are pretty sunny, carrying on pretty much as normal, things are just a bit overcast now and then – but I never know when it will start to drizzle or worst still develop into a full blown storm complete with thunder and hail stones. A bit like the weather forecast, MS cannot be trusted.

Having MS really has fu*ked with my head. It has made me question everything.

My career, my relationships, my future.

I always thought I had a forever to do things, to go places, to have a family. Being told that forever may not be quite as long as you thought or may be limited in some way is an extremely difficult thing to deal with.

Do I carry on along the road I am on or do I strive for something else, with the possibility that I never find it? Do I bring things forward, try and fit them in just in case? Or do I carry on as normal, not giving into MS, and run the risk that I may have to take an alternative route in the future according to my limitations?

I cannot imagine what it must be like to be told that there is a time limit on life and my heart goes out to those with incurable diseases such as those mentioned in that ‘tweet’ I quoted.

But equally I too am living with an incurable condition and whilst it won’t kill me the feelings of grief, anger, pity and sadness must surely be the same.

‘Not knowing what the future will bring means you have to flourish in the now’

18. Bumps, bruises and bio-oil

I fear that my hot-pant-wearing days may be over. Not that I make a habit of wearing skimpy shorts, having hit the big 3-0 on the curvier side of things … but should the desire suddenly overtake me, it would’t be a good idea.

I look like I have been attacked by a flesh-eating monster. One with suckers, like an octopus, but bigger and with little sharp nippers. One which loves thighs, tummies, hips and upper arms and doesn’t much care for other bodily areas.

I may have adjusted to the jabs, stopped crying, stopped dreading and generally pulled myself together, but now my body is staging another protest to the copaxone violation …. injection site reactions.

On some days my skin goes red, swollen and hot, in a big patch which spreads out around the puncture mark. And it itches. And is sore. Like when you scratch a mossie bite and it spreads into a big angry mess.

On other days the puncture mark turns into a knotted lump underneath the skin,  which I have to massage to break down, make it disappear, to avoid my body turning into a lumpy bag of spanners.

On most days the skin around the puncture mark bruises. Sometimes a deep crimson bruise, like a capillary has burst and there is a pocket of blood trapped beneath the skin. Sometimes a big blue and yellow bruise, so much bigger than the area I have injected, sore as if I have banged myself hard.

These reactions last more than a few days but seem to have mostly disappeared by the time a week has passed by and I’m back to injecting the same area again.

It’s true that the monster bites are mostly hidden, that no one can really see them  (luckily I don’t make a habit of running around naked). But I can see them and do see them everyday, and quite frankly they make me feel like a right rotter. More of a rotter than I already feel for having to inject myself in the first place. And self-conscious. Like people would be alarmed if they saw them. And ask whatever had I done …

The monster bites are very time consuming too. My usual post-shower-moiserisation is no longer that simple. I now have a series of products for application depending upon the reaction – arnica gel, calamine lotion, bio oil, a cream to smooth out orange-peel skin … it’s a wonder my clothes don’t just slide off, the amount of stuff I am rubbing into myself. Plus all this extra skin care is bad news for someone whose routine already takes far too long …

Perhaps reassuringly all these things are common side effects with copaxone, mainly because it is man-made and injected daily. So it looks like the hot pants are going to be confined to the back of the wardrobe for a while longer. Mind you they always did chaff a bit. The flesh-eating-monster is welcome to them.

17. Head over heels for MS.

MS is a funny thing. Despite all the modern day advances in scientific research even the brainiest scientists haven’t been able to figure it out.

It’s just my luck that I got something a bit tricky, a bit quirky, a bit awkward. Because that’s a lot like me.

But luckily the researchers, like me, aren’t for being beaten by MS and the quest for answers continues.

Only on Monday, whilst at the MS Clinic, I was asked if I would be willing to take part in a ‘Genetic Analysis of Multiple Sclerosis’.

‘Blimey, that sounds very fancy!’ I thought, thinking I was a special case and had been specifically selected, as though I had won some sort of MS prize ….
it was then explained to me that all patients were being asked to participate in the study by donating a sample of their DNA.

It seems the study is designed to try and identify the genetic factors that influence how multiple sclerosis is likely to develop, it’s effect on individuals and their response to treatment.

I of course agreed without hesitation. If scientists are willing to dedicate their time to the study of MS, the least I could do was donate a bit of DNA.

I was then faced with a choice of two ways in which I could give my DNA: 5ml of saliva or 30ml blood.

Not being comfortable with the idea of having to muster up enough spit I opted for blood.

The lovely nurse explained everything to me and painlessly took two vials of blood from my left arm.

I thanked her, gathered up my copy of the paperwork and signed consent form, my coat and handbag and hurried out, anxious to get to court before my absence became too noticeable …

…. the next thing I remember was a flurry of voices and activity around me. I opened my eyes and I was on the waiting room floor. The waiting room that was packed full of patients and their friends and relatives waiting for appointments.

Head over heels. How embarrassing!

The hospital staff swooped down, gathered up me, my copy of the paperwork, my coat, my handbag and my heels (which had seemingly fallen off) from the floor and swept us all into a side room.

I was swiftly lay down onto a bed and all of my belongings placed carefully at the side of me. Simultaneously a glass of ice cold water was placed in my hand and an industrial strength fan placed at my side.

It was all very slick. They knew exactly what to do. On the other hand I don’t think I have ever been so embarrassed. I felt like such a fool. I kept apologising.

The lovely nurses assured me that it was ok and that I was not a complete idiot.

They made me a sweet cup of tea and had a doctor come to check my head which I had cracked on the confidential waste bin on the way down.

‘Do you work?’ they asked me.

I have been asked this question previously whist at the hospital. Infact it is a question that troubles me. The question used to be ‘What do you do’, the presumption being that I had a job. I don’t know whether it’s a reflection of society or the fact that I have MS, but it appears that is no longer an appropriate question…

… even my black Hobbs suit, lace patterned tights and heels weren’t obvious indicators of my employment status, despite not being obvious hospital-appointment-wear and making me stick out like a sore thumb in the waiting room.

… I suddenly remembered that I ought to have been at court by now …

‘I need to get to court!’ I declared.

This generated the usual mixed response of disconcertion and confusion as they tried to work out what I had done to necessitate a court appearance.

After receiving the all clear I gathered myself together and gingerly tip-toed out of the side room and round the back of the waiting area towards the exit, trying desperately to avoid being seen by anyone who had witnessed the incident.

The banging headache and sore hand I had for the next couple of days wasn’t a patch on the massive crash damage to my ego. But then again I find the best way to deal with these things is to laugh. That being preferable to any more tears. And like I said, MS is a funny thing.