Taboo to you - BOO! I'm back!

It has been a ridiculously long time since I blogged and I am not going to try to explain why. Not least because I'm not sure why. Today I had a conversation with a dear friend who has a blog I didn't know about before (laraknowlden.blogspot.co.uk). Her most recent post included such truth and honesty it has inspired me to write here too.  This might be a diversion exercise as I should really be writing episode running scripts for my new online TV show http://www.wawow.co.uk!

Lara says: "In some ways depression and also the menopause are more taboo subjects to discuss than cancer." As I blur the lines between anonymity and a public face, it can be hard to be honest. To tell the truth, the whole truth and nothing but the truth. There are so many taboos.

I am more honest about my multiple sclerosis than I used to be. It holds less fear for me to say I have MS when in professional situations. I more frequently take my stick with me when auditioning or meeting people who might be employers. Of course, this might just be that walking without it has become more difficult as I fall over. A lot. Don't worry, the ground always breaks my fall.

I expect fewer people know that I am in menopause and some of my regular meds are for (probably MS related) depression than know that I have MS. Yes, I take anti-depressants to keep the depression at bay. This makes me think of my need to attend continence advisory clinics. I have to remind myself that it is not with an 'incontinence' nurse. I seek continence, both bladder and bowel. Too much information? Is that the biggest taboo?

I confess here that not only am I having tests related to a mega period-like bleed despite being in menopause and on HRT (partly to protect my bone density). And I take the aforesaid antidepressants. And I have MS. I have also had several (more than 2 less than 10) 'accidents' recently. Is incontinence such a taboo that even medics refer to it as accidents with me? The accidents have meant I have to do more washing - the increase in washing detergent use alone must be part of what my DLA pays for. And a few weeks ago, I had to clean up the driving seat of the car I had only just bought. I didn't have to buy the car because of that 'accident'. In fact I am thankful the driver who rear-ended my previous car causing it to be written off, didn't also cause me to have an 'accident' of that nature. That would have been embarrassing. The driver works for an insurance company. I think that’s a bit embarrassing.

So, what are the taboos? As an honest person, how much about my life can I or should I talk about, openly and honestly? I am online dating in the hope of meeting someone with whom I can have a relationship. Is that a taboo too? What are taboos and what are examples of them? At least, I don't fart in public... oh, hang on, yes I do! 

If it happens, it's by accident

I went bowling with MSer friends yesterday. Despite our various mobility issues, we all enjoyed the fun of trying to get a bowling ball to go straight down an alley and hit enough pins to score anything at all. When I say all of us, the pregnant woman who had broken her elbow and had it plastered in a beautiful purple cast was excused on the grounds of complete lack of arm use. Jane was along for the giggles and her husband/carer more than made up for her non-participation by energetic and successful bowling.  Some of us other MSers were pretty good at not knocking down any pins (or two at most) each go. Not me of course. I only once failed to score anything, just the once. What’s the opposite of a strike?

A young man in the neighbouring lane spectacularly managed to get a strike – in a neighbouring lane.  He vigorously hurled his ball down his lane, it bounced and went into the next door lane and knocked all the pins down. I couldn’t do that if I tried (and he probably couldn’t either).

I wasn’t absolutely the worst bowler but out of nine people I was third from bottom. Two people shared the lowest score so mine was pitiful but I did pretty well for someone whose legs had nearly given up after an hour.  I’m not a competitive person but I don’t like to lose. I avoid too often taking part in activities where there are rights or wrongs. Bowling is strange because in theory, when you are good, you would get a strike first time, every time.

It’s the same with darts, you should be able to complete 501 in the same nine darts combination every time (T20 x 3 – T20 x 3 – T20, T19, D12 = 180 – 180 – 60, 57, 24) but even top professionals don’t. I used to play darts. My team (and I personally) won cups in our league. After a while I developed dartitis. Yes, it is a real condition and it led to many holes in my living room wall.

http://www.darts501.com/Dartitis.htm

Less of a problem for me to develop dartitis than it was for professional darts player Eric Bristow but it did mean, like with my bowling, I was never going to achieve consistency in my arrows.

I agreed with one of the others last night that it was pure chance whether I scored well or not. I had no skill, particularly as bowling whilst holding a walking stick is tricky. Without technique, getting a strike was not so much a choice as a happenstance.  I decided if it happens it’ll be by accident.

I wouldn’t bet on me and that’s not just because I don’t gamble.  None of us can know for sure what our future will hold.  I didn’t know I would get MS.  I couldn’t have called it.  The coin toss clip from No Country for Old Men has particular resonance with me -

http://www.youtube.com/watch?v=wkh6if8TL2U

To use another film clip, Trainspotting - contains swear words I would still choose life even though there are no even bets. So much in my life is a game of chance – castings where you can never be sure what the director is looking for, health issues where you can be fine one moment and pretty much laid flat out the next, relationships where you think everything is going well and then….  If it happens (whatever it is) it’s by accident.

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.

15 Things I Drop

I used to have a firm grasp of things. At least I think I did. Now my brain is like scrambled eggs and not lovely fresh, golden yolked, free range scrambled eggs. No, my brain is more like the insipid pale, slightly watery scrambled eggs you get in dodgy budget hotels. Lots of things seem to drop from my scrambled eggs.

I'm sure it’s the scrambled eggs for brains that also means stuff drops from my fingers. Often and repeatedly. It’s not my fault. That gravity thing is very strong, who am I to compete?

In no particular order, 15 things I drop are:

1. KEYS – house keys, car keys, the key to the mystery of the universe (okay, not the last one, I’m keeping hold of that).

2. FILOFAX – yes, I still use a filofax. When I drop it, papers often fall out. One of these might be my drugs list (see 3).

3. PILLS – I take a lot of meds. At the moment, my 8am meds are two capsules and one tablet, when I am back on the drug trial study (hopefully next week if today’s blood test shows my Pacmans have increased) it will be three capsules and the tablet; at 2pm it’s just two capsules; at 8pm I take two capsules and two tablets. On top of that there are the ‘as necessary’ mega strong painkillers plus Paracetamol and Ibuprofen. Drop any or all of those and I apply the Five second rule

4. PEN – remember them? I use a pen most days. Dropping an ink pen in bed can be very messy.

5. WALKING STICK – sometimes it’s not that I drop it, more that it has a life of its own and falls. This is pretty much a daily occurrence.

6. MAKE UP – when putting on mascara, dropping it can result in particularly attractive pseudo camouflage effects on the face.

7. SHAMPOO BOTTLE – this is not a huge problem in the shower except that the resulting excess of bubbles would rival any children’s party and, when it hits the bath, it’s loud.

8. MOBILE PHONE – the worst drop was into the snow. I applied the five second rule. Not that I ate my mobile but I picked it up and it worked – at first. I don’t own that mobile any more. Water damage.

9. EARRINGS – often these are actually studs which are very hard to find on the floor. They bounce.

10. LISTS – I make lists for all sorts of things. To-do lists, shopping lists, phone lists, repeated reminder lists. I may lose a list or drop a list. I sometimes don’t realise I’ve done either of these things and certainly can’t find it once it’s gone.

11. REBIF CAPSULE/NEEDLE – I don’t inject now so this is no longer an issue but I did once drop a needle and couldn’t find it at first. I used to inject in my bedroom so the thought of a random needle being on the floor was worrying. I found it later that night. Fortunately not by treading on it.

12. WATER BOTTLE – I am supposed to drink a lot of water. I have a lot of water bottles in lots of different rooms and two in my car. When I drop them at least it’s only water that spills.

13. CUTLERY – it’s annoying when I drop this particularly if there is yummy food on it. Especially if it’s the last mouthful of that food. Somehow it doesn’t seem right to apply the five second rule to food on cutlery.

14. DRINKING GLASS – smashing. Literally.

15. TOAST – not only does it land butter side down but the last time I dropped toast it had marmalade on. It landed marmalade side down. I was outside – does the five second rule still apply?

I ate it.

What’s the worst thing you’ve ever dropped?

If it's Tuesday it must be...

There have been many times in my working life when I have been in a different town each day. I used to remember things and know where I was going to be every day. If asked, I could usually reel off the forthcoming destinations without looking at a list or my filofax. I am still essentially a pen/pencil and paper girl. I write appointments down. I put them on the calendar on my iPhone. I keep lists. Nowadays, I have to look at these otherwise I often have no idea where I’m going to be tomorrow, where I was yesterday, sometimes even where I am today.

This week I know where I am and I’m not at home. It’s easy. I’m in one city, although over the weekend I travelled to three different places. The third of those was where I am now. I’m in the same hotel for four nights, working in the same location each day. The job is for people who’ve used me many times over the last few years. They are lovely, well organised, professional and friendly. Today for the first time I told one of them that I have multiple sclerosis.

She had made the totally excusable and common assumption that I had a walking stick because I have something wrong with my leg. She wanted me to know there was a different (shorter) route in the building I could use. I don’t always let people see me with a stick when I am working. I am not ‘out’ as a MSer professionally. Indeed, on this job, I was quite discreet about my stick, not using it around the building, but I had to use it to get there as my balance has been a bit off recently and it was quite a long walk. Delightfully, when I explained to her that I have MS but don’t usually tell people, she took the very positive stance that it made no difference and was nobody’s business but mine.

This is how it should be and today this is how it was. I wish I could be sure everyone would have the same non-prejudicial mindset.

One thing I do know is that I don't know where I am next Tuesday.  I'll have to look it up in my filofax.

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.