Tuesday, 25 June 2013

Bouncing Back

Despite what the title implies this is not a self help post about starting a new chapter. It's more literal than that!
Me & Gareth (OH) had both noticed random bruises all over me with no explainable cause. It looked like I had been poked and prodded repeatedly - which I had not. 

Having read other people's experiences with MS I've noticed that phantom bruises are a common problem. I was always quite clumsy so it wasn't as alarming as I'm sure it is for some people. I regularly walk into things, bang my legs off tables so bruises are very common. However one or two explainable bruises started to become 10-20 unexplainable little bruises. 

It all became clear one night when I noticed that I was literally 'bouncing off the walls' in our hallway on my way to bed. I realised I had been using door frames, tables and walls as springboards to continue on my journey. I had turned walking into a pin ball machine! Maybe we should pad all the walls - no jokes required! 

Saturday, 22 June 2013

Right Reaction? Wrong Reaction?

When you're diagnosed with any disease people expect a certain kind of reaction. I'm not entirely sure what this reaction is but everyone else seemed to know. Are you expected to fall to your knees wailing 'why me!'? Are you expected to cry? Hide away? I never felt these things. I've never cried because I have MS. I've never hidden the fact I had it. Yes, occasionally I get frustrated at my own legs and rant to myself about how useless they can be but my first reaction to being diagnosed was 'well, time to suck it up and get on with it!' and so I did. 

I do remember a few years ago an incident that will always stick in my mind. 
The MS Society had set up a table in the shopping centre that I worked in. My mother (who also worked in the centre) introduced herself and of course told them all about me. I called down to see them on my lunch break and was talking to them about up and coming events. This was all great. Then one of them asked me if I'd been down to the society in Newry. When I said no he seemed shocked. He told me about the great councillors who could help me cope with the news. Now, I think the work they do is incredible and for those who need it they provide an incredible service. I however never felt I needed counselling. I got frustrated that someone was telling me that I did (should) and basically telling me that I didn't know how I felt. 

Did I have the wrong reaction? I wasn't in denial I just think there are worse things in life. Everyday people are diagnosed with terminal illnesses. I can't imagine how that feels. MS won't kill me! It's just gonna mess with my life a bit so I say 'BRING IT ON!!!'

Thursday, 20 June 2013

Like a cat!!

As I previously mentioned, when I was first referred to my neurologist he did many tests. These test were pretty standard neurological tests. Most of them are pretty easy, ie. touch your nose with your finger, follow his finger with your eyes. Some are funny to me because I'm not sure i was very good at them before the MS ie. walk heel to toe (one foot in front of the other), stand on one foot and my favourite one, rub one foot up and down your other leg (harder than it sounds). 

My favourite tests will always be reflex and sensation tests. He used a tuning fork (an instrument musicians use to tune using vibrations) . He placed the tuning fork next to my foot to see where I could feel it. It was crazy to see him hold a tuning fork next to the sole of my foot and not be able to feel it. I hadn't even realised there was no feeling there! 

Next he tested my reflexes like your GP would do when you're a child. From what I could see they were all fine. I was reacting when I was supposed to so I was pleased. 

At the end of the tests he said I had 'acute reflexes'. I was thrilled! I had excellent reflexes - who wouldn't want to hear that!? I believed  I had the reflexes of a cat and I was almost feeling a bit cocky. He quickly pointed out to me that in fact 'acute reflexes' is in fact not something to be proud of, it is in fact not normal and was yet another symptom of something neurologically wrong. 
Well that burst my bubble!
Still - it's fun to lie and tell people I have the reflexes of a cat to make up for the things that don't work - like my own heighten sense :) that's my story and I'm sticking to it :)

Wednesday, 19 June 2013

Nobody puts Bambi in the corner

When you have any kind of illness then you expect occasionally to be treated differently. I'm not saying that this is good or bad, it's just fact. 
I've found that the majority of people have good intentions and do mean well but I have a few things to clear up.

1. I may walk with a stick but I'm not stupid nor do I have mental disabilities.
I do find that people will sometimes talk slowly (and sometimes loudly) to me. Others will just not talk to me and talk to Gareth (OH) or work colleagues instead

2. I am not useless. 
This one I try not to get annoyed at but sometimes it's very frustrating. People often want to do everything for you. I know they are trying to be kind but it's not necessary. I am able to walk, make a cup of tea, carry a plate etc. I know there are restrictions on what I can do but I will ask for help if I need it :) 

3. Im not in a freak show
This one i do get annoyed at because its not due to a lack of education about the disease, it's a lack of manners. 
I've had people stare at me, whisper about me and when I was working I regularly got asked 'what's wrong with you?'by random strangers. I'd also like to point out that these examples are not of children - always adults -always rude. 

So in summary
I'm not stupid
I'm not useless
I'm not here for you to stare at

Nobody will put Bambi in the corner!

Monday, 17 June 2013

Secrets Out

Now for those of you who don't know, the reason that MRIs are used for diagnosing MS is to check for "scars" on the spinal cord. By the time the results finally found their way to the neurologist desk I had already decided that there was scars and I had MS despite the lack of proof. So much so in fact that it almost seemed pointless being told I had MS by the neurologist. 
The benefit of this appointment though is that a plan of action can be put in place. I met my nurse and treatments were discussed. It would be months before I started on my medication but it all began that day. 

MRIs and Mutivitamins

After my consultation with the neurologist the next step is an MRI scan. Now for any of you who are not familiar with this procedure let me explain.
You are put inside a large metal cylinder and strapped down - almost like a sadistic torture chamber as they take scans of your entire spine. 
You are told beforehand that the scanner is QUITE loud. They weren't kidding! They left me in there for 45mins which felt like a lifetime. To pass the time and distract from the noise they played the soundtrack to 'Dawsons Creek' into the scanner which made me laugh (not easy to control when you're not suppose to move). I felt is was a strange choice of music, especially since most people in these scanners are already feeling pretty depressed about life. Seemed a bit like they were trying to induce some kind of feeling of hopelessness! They just underestimated my sense of humour! 
When the scan was over and I was 'released' I couldn't help but try to read the faces of the staff to get some idea of the results but they were part of the 'big secret' and were giving nothing away. 

So then they made me wait 3 MONTHS for the results!! 

During the waiting period I had ample time to do research (as did everyone in my family). There are many theories on what causes & helps MS. So in 3 months I went from never taking supplements to taking everything that had any link to MS- Vit B, Vit D, Vit C, Fish Oils - you name it i tried it! I can't say for sure that it made a difference but it certainly didn't hurt. 

The Big Secret

So... Having decided that lead legs are not normal i did decide to see a doctor. At this time I was sure it was down to my veins and figured it would be a simple diagnosis and treatment, oh how wrong I was lol. 
So my GP came to the same conclusion as me and referred me to a vascular surgeon - woohoo! - or so I thought.
A month later I go to see a vascular surgeon at the hospital. I'm prodded and poked and quizzed and finally he tells me that I should never have been referred to him. He clearly knew what was wrong with me but all he said was 'you don't need a surgeon you need a neurologist'. 
So EVENTUALLY I get an appointment with a neurologist, 18th December 2008, a date I won't forget. Not only was it a week before Christmas but also the first time MS was mentioned.
I did decide to bring a translator with me this time. This big secret that they don't want to share would be leaked somehow with clever tactics. So my sister (physio by trade) worked as my mole. Ask the right questions, speak medical jargon that means nothing to me and after the appointment translate in lay mans terms what the hell he said and what the tests were for. She was the one, the only one, who throughout this initial pillar to post journey who said it was probably MS. 
Initial reaction - relief to have a possible answer and honestly an element of smugness that I'd cracked the secret they were all hiding from me. 
Now they just needed some proof...

Sunday, 16 June 2013

Where it began...

So it's circa 2008. By no means was I ever an active, exercise driven person so perhaps there was symptoms earlier than then. I did however have a very lively 3 year old Labrador that needed to be walked so wether I wanted to or not I had to do some exercise. I found that when walking home that my legs started to feel like lead weights, it was like my legs couldn't lift my feet anymore. First response is of course 'God! I'm really unfit' and you think nothing more of it. There were many theories..
Wrong shoes, varicose veins and my favourite - I was just too lazy to walk properly. Whatever the problem it needed to be solved, if only to save my shoes from being dragged around. 

Why Bambi?

For those of you who may have been confused by the Bambi reference, let me explain
Although i have a varied selection of symptoms my main symptoms tend to be mobility related.  I've also found that over the years my balance and my legs have developed a mind of their own.  Like Bambi, the legs don't always co operate with the brain. And like Bambi, its easier to overcome these problems with the help and support of your friends. 
And i'm not gonna lie - I've used the Bambi techniques to stand up sometimes! I highly recommend it as a point of reference