10. Don’t mess with me, I’ve got MS …

There are some people that seem to fall over on a regular basis whether through excessive alcohol consumption or inappropriately high heels. I am not normally one of those people despite my love of the odd g&t and a killer heel.

That was until recently when I seemed to be incapable of walking anywhere without ending up on the floor.

The first time was before christmas. I was with friends on our way out for dinner when I began to fall. Luckily my friend grabbed hold of my arm and stopped me before I actually hit the pavement.

Then last month I took a cheeky detour to Ted Baker in Spinningfields when I fell again as I was walking up the steps. Unfortunatley this time there was no one there to catch me and I fell flat on my face onto the wet pavement, my bags and umbrella flying in all directions. The area was quiet and so I picked myself up, dusted myself off and continued my walk with the most dignity I could muster, despite my distress at the scratches on my Mulberry handbag.

I didn’t really think much of either of these incidents putting them down to uneven paving stones or wet steps and it wasn’t like I had hurt myself.

Then a few days after the Spinningfields mishap it happened again.

This time I had just left my flat and was walking past Aflecks Palace. Suddenly I hit the pavement again. Only this time my ankle went over and twisted awkwardly under my weight. It really hurt. Some passers by came to my assistance and helped me to my feet whilst asking if I was ok. I, crimson faced, muttered something about my heel getting stuck in a pavement crack and sat down on a step to recover insisting that I was ok.

I carried on to where I was going but by the time I returned home my foot was heavily swollen and hot and so I spent the rest of the evening with it raised up and a bag of frozen peas balanced on it.

It was after this I became concerned. Concerned that all three of these incidents seemed to have a similarity. No, it wasn’t the fact that I was tottering in stilettos on each occasion. It was the fact that every time I had been stepping with my right leg. And each time it was my right leg that had given way. My right leg that had been numb and was still a bit weird.

Cue Barbara and Frank – an occupational therapist and physio therapist from the neuro-outreach team at Manchester Royal Infirmary.

I went to see them this week following a referral by my MS nurse.

They watched me walk across the gym and as I stood on my tip toes and my heels and on each leg one at a time. They tested the strength and sensitivity in both my legs and feet. And I didn’t fall over. And they were very impressed. Although if the leaflet they gave me is anything to go off they are used to helping people with very severe mobility problems so it’s perhaps not a surprise that they seemed quite pleased with me …

So it looks like my falling over could have simply been a coincidence, or a symptom of the new lesions shown up by my last scan … but definitely not down to my shoes 😉

Then last week my running skills were put to the test…

I was walking home through the northern quarter and taking a short cut down a back street. As usual I had my hands full of hand bag and work papers. As usual I was texting on my phone whilst walking along. More unusually I had flat boots on which was a good job really. Because as I approached a guy who was walking towards me, he lunged forward and grabbed my phone out of my hand before running off. I did what any self respecting girl would have done and shrieked ‘stop!’ before running after him.

I would like to say that I chased him at super speed, gaining on him until I got close enough to wallop him over the head with my handbag before beating him to the ground and grappling my phone out of his hand ….

… Instead I was no match for him and undeterred by my hot pursuit he disappeared into the northern quarter.

But, by a weird twist of fate, or perhaps just good luck, the police were already looking for him as he had tried to do the same thing to someone else only minutes before and spotted him running away from me. They chased him and arrested him in piccadilly gardens. With my mobile phone.

So although I didn’t manage to catch him and perform a citizens arrest, I did chase him into the sights of the police and certain capture … which just goes to show that perhaps my legs are pretty good after all … and you shouldn’t mess with a girl with MS ….

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9. MS friends.

I’ve read on the internet about support groups for people with MS although I didn’t really feel like it was something I wanted to get involved with. For a start they seemed to meet up during the working day when I certainly don’t have any spare time. And anyway I have lots of support already.

Then I found out about a different type of group … a group which was meeting up in a pub and so I figured that it might be alright after all.

Working though MS is a group recently set up by someone with MS who wanted to enable those diagnosed with MS to discuss their condition with like minded people. I found out about it through a friend of a friend – Katie – who also has MS and has been both very useful and supportive through recent emails (you may have seen her fab comments on here already).

I didn’t really know what to expect. I worried that it might be like one of my trips to the hospital … where I am brutally confronted with what the reality of MS can mean for some people … and leave me in a state of deflation when I am working so hard to stay positive.

On a practical level I wasn’t sure how I would find the group in the pub. How many people would there be? How old would they be? What would they be like? What would their experiences of MS be?

I wished that I had thought about this before I had arrived. As usual I was running late. I bought a drink at the bar. I suddenly felt very self conscious, worried that I looked like I was on a date and had been stood up. I ought to have arranged to wear a red carnation. Or at least taken a mobile number of someone that was going …

I picked up my diet coke, took a deep breath and did a lap of the pub, scanning the tables for anyone who looked like they might have MS (what the hell do people with MS look like??!!)

It was then I spotted a group of people sat around a long table wearing name stickers. Phew, I thought, it must be them … and it was.

Whilst I hadn’t known what to expect, I certainly hadn’t expected them to be so positive. And optimistic. And therefore like me.

What became clear is that they had all had very different experiences of MS. Some had been diagnosed for as long as 20 years, some much less. Some were on medication, some weren’t. Some had suffered definite relapses, others hadn’t.

But what everyone did have in common was that they hadn’t let MS take over their lives, or stop them doing the things that they wanted to do. Everyone still worked although some found it easier to adapt their working hours. Everyone still lead ‘normal’ lives. Everyone was able to see the humour in their situation.

What I did realise is that I have been very lucky so far. I haven’t spent years having my symptoms written off as other things. Instead I have been diagnosed quickly and am getting the help I need.

So rather than being like my post-hospital-appointment-deflation, I felt quite the opposite. Positive, optimistic and strangely proud to be part of such a great group of people.

As one lady said to me ‘I have MS. It does’t have me’.

Well here’s to that. And to our next meeting 🙂

Update ….

1. No, my injection kit still hasn’t arrived. Yes, I have been keeping a low profile and am yet to alert anyone to the fact that it hasn’t arrived. Yes I promise I will phone my MS nurse and tell her that it hasn’t arrived. No I haven’t told the hospital that I have emigrated.

2. Neil’s London Marathon training seems to be going quite well. I went for a run with him last week to check up on his progress. His technique seems good, one leg in front of the other. We only did a short run as I didn’t want to show him up. He racked up over 80 miles in January and did 17 miles on Saturday. I understand that this Saturday he will be doing 20 miles. Obviously I would join him but sadly I have prior commitments …. I am however available for Friday-night-carb-loading and this may be better suited to my talents. I can eat more pasta than anyone else in the whole world.

3. Neil’s fundraising is also going well from sponsorship and cake sales. A big thank you to Barbara, Philippa’s cake teacher, who gave us a lovely Teddy Bear’s Picnic Cake earlier this week. A big thank you to everyone who bought raffle tickets to win said cake – we raised £55! And finally a big thank you to Barrie who won said cake for sharing it round the office … it was yummy.

4. I have taken delivery of two books from Amazon which have come recommended;

‘Awkward Bitch, My life with MS’ by Marlo Donato Parmelee

and ‘Overcoming Multiple Sclerosis – An evidence based guide to recovery’ by Professor George Jelinek.

I will let you know how I get on with them.

5. On Wednesday evening I will be meeting a group of others with MS for a drink.  I’m looking forward to this but am apprehensive at the same time … again I will let you know how it goes.

6. Next Monday I am seeing an Occupational Therapist and Physiotherapist from the Neuro-Outreach Team. Not sure what to expect ….

So it’s all go go go … how did I fill my time before I had MS eh?!

8. My Dad wants to drill my brain…

Ok, so that’s not entirely true, I may have used a little artistic licence there …

… however, it seems that Italy, the country that has provided the rest of the world with the best food, cars, architecture, and men … (all according to my dad) … has now provided us with the cure for MS.

Dr Paolo Zamboni, an Italian surgeon, is of the view that MS is in fact caused by a narrowing of the blood vessels to the brain which in turn causes a build up of iron that leaks into the brain tissue and it is this that causes the damage. He has called this ‘Chronic Cerebro-Spinal Venous Insufficiency’, or the more snappy ‘CCSVI’ and has developed an operation which widens the blood vessels again by inserting a stent or a balloon.

Now as I’ve already mentioned my family would do anything they could to make things right, to make the MS go away. So when my family in Italy came across this potential miracle cure, hysteria hit the Amatino’s. No sooner than you can say ‘ciao’ my cousin was on the phone to Dr Zamboni and my Dad was on the Easyjet website booking flights over there. And no-one had even mentioned it to me by this point.

But as with most miracle cures, it seems that this may be too good to be true, or at least isn’t yet properly tested and proven to be successful. On the one hand it has been described as ‘promising’ and has shown to have been successful in many cases. But equally many describe it as ‘controversial’ and I have read of a death in Canada following the op.

In the UK, NICE (the National Institute for Health and Clinical Excellence) has recently undertaken a consultation into the procedure and is encouraging further research.

Needless to say I am less enthusiastic about the thought of jetting off to have my skull drilled in a somewhat experimental procedure than I am about injecting myself on a daily basis …

However what this does show is that things are always moving forward, research is continuing and potential solutions are being sought. And whilst I already have more potential options for help than those 10 or 20 years further down the MS path than me, the options are ever increasing too.

I just won’t be sitting still at my parent’s house for a while … after all my Dad is the proud owner of the full range of Black and Decker power tools … and has been known to glue his own wounds back together in DIY home surgery rather than take a trip to A&E … Better keep a low profile until the hysteria at the Amatino’s dies down …