Human Water Balloon

Okay, what an eventful month! 

First things first, I'm no longer working (at least for now). 

About 3 weeks ago I could barely stand up. My Bambi legs were in overdrive! I also found that my hands were getting weak making typing a difficulty. So it was time to make a call to my nurse. 

I already knew how this conversation was going to go. I knew it was a relapse and I knew what the plan of action would be. 

STEROIDS!!! AHHHH!!!!

Now - don't get me wrong, steroids do work. For those of you that are unfamiliar with what they do or why I use them, let me explain as easily as I can. 

When a relapse happens it means there is inflammation somewhere in my nervous system. Steroids then basically blast the inflamation so that the symptoms ease off faster than letting it calm down in its own time. So they don't stop the relapse or cure any damage caused but they can make a relapse last a couple of weeks instead of months. 

All good? Yes? Well in theory yes. 

In reality - it's a catch 22 situation. 

Steroids have so many side effects of their own.  And I hate them. 

(1) I lose the ability to sleep for longer than 4 hours a night for 10 days 

(2) I feel like my mouth is lined with sandpaper

(3) Due to having to drink more fluids I have to pee EVERY 15 mins

and my favourite 

(4)  WATER RETENTION 

On one occasion, the worst occasion, my legs were the same width from my thighs to my feet. Not only is this not attractive it's very uncomfortable. I honestly thought my legs were going to rip open. Also as if the legs aren't enough, I tend to look 6 months pregnant. The only thing I could do was lie with my legs in the air and hope the swelling went down. I also made friends with dandelion tea. Doesn't taste great but it does work - just have to make sure there's a toilet nearby - I've never peed as much in my life! 

This joyful experience also doesn't stop when the steroids are out of my system. It can take weeks to get the swelling under control. 

I become a Human Water Balloon!!

(but I can walk again😄)

Back to work

I know I've been very quiet these last few weeks but I'm back! I've started back into full time work and it's been a bit of a shock to the system. 

Working with MS is always an adventure. I was spoilt for a long time where employment was concerned. I was management when I was diagnosed so it was a lot easier to adapt my duties to what my body would allow. I did my own rota so I wasn't ever over worked. 

Then that came to an end when I was made redundant.

 I hadn't planned to return to work. I saw this as an opportunity to look after myself. Life had other plans (as is always the way). So I had to find a job.

Now I was faced with job hunting with a disability and quickly realised that everything I was qualified to do my body would no longer allow me to do. 

So I applied for work in a call centre. At least I could sit down all day. 

I have now discovered that sitting all day is in fact making me feel worse. My legs tend to seize up so I can't stand up even when I want to. 

However, I will not be beaten by it, I have no choice, it's this or nothing! 

Guess ill have to keep playing the lotto :) 

You Me & MS

I've mentioned my OH Gareth in previous posts but I suppose I should mention our relationship in a bit more detail. 

Gareth would be the main supporting cast member in my life dramas. 

We met in 2009 when he was a customer in hmv where I worked. We met up for coffee, more of a chat than a date.  Before I met him I had considered not mentioning the MS as it wasn't definite then and it's not exactly what people look for in a partner. In the end I decided that honesty was best. He needed to know what he was getting himself into. 

So our first proper conversation was about MS. I told him that if he wanted to run a mile then I wouldn't hold it against him. There was no hesitation from him. It didn't put him off. It didn't even seem to phase him. 

From then on it was a learning curve for both of us. New symptoms were discovered together. Some I didn't see but he did. He didn't provide pity (thank god) and thankfully saw the humour in the situation that I did. 

Gareth bought me my first proper walking stick because he knew that I wouldn't want to use a little old lady stick, if I'm gonna be crippled then I want to do it in style :) he learnt to walk on the right of me incase I needed the extra support and he will help me stand up when my Bambi legs don't want to. 

I know that people feel bad for me when they hear about the MS but they don't really think of everyone else it effects. I always tell people that its worse for Gareth than me. I sometimes wish Gareth had met me before the MS when I was 'normal' but there are benefits to him only ever knowing me this way. He never had to 'mourn' the person I was like me & my family have. 

Our life together is normal for us :) we learn to adapt and we will continue to discover the 'joys' of MS together (if he doesn't kill me first) 

The Sun - My Nemesis!

I know i have been quiet this week - the heat is killing me. 

Because of this I thought this was probably the best time to explain why the sun is my nemesis :) 

Even as a child I didn't like the sun and would have always preferred to be indoors in the shade. This has not changed in adulthood. The heat always made me tired and made me feel sick so it's a good thing I'm irish! 

When I developed MS I became even more heat sensitive. My symptoms are exacerbated by any heat. I can't have hot baths or showers, when I open the oven it's like being hit by David Haye! 

Occasionally,  like most women, all I want is to lie in a nice relaxing bubble bath. This is no longer as relaxing as it used to be but sometimes standing in a shower is too daunting so a bath seems more appealing. After battling balance issues to get into the bath it's all good, nice bubble bath, relaxing, perfect. Until....

My legs decide that lying in the bath is where they want to stay. I can't bend my knees so shaving my legs in the bath is a no no :) so then the fun begins! How do I get out?? Uncooperative legs and a slippy bath do not make an ideal combination. I have found ways to master this after many attempts - none of which were very dainty or attractive. 

First step is to drain the bath which does end up making me look like a beached whale (very attractive). Next drag legs over side of the bath. And finally using all upper body strength drag myself up. Now ideally the aim is to end up on the edge of the bath but I will always have towels on the floor just in case I end up there :) not as relaxing as it should be really :)

Now for any of you reading this thinking why does she not get her partner to help her I'd like to explain that he does offer every time! I'm stubborn and if I can do it by myself then I will. I will not be beaten by a bath :) 

So you can imagine how I felt when I heard there was going to be a heat wave! I think of it as lead leg season. Walking from the house to the car is like climbing Everest and you can rule out standing in a cue anywhere because my legs don't really want to stand up.

Now this is the funny part for me. Research into MS has shown a link between Vit D and MS. Countries further from the equator tend to have higher levels of MS due to the lack of sunshine. 

So if, as a child, i had embraced the sun then perhaps I wouldn't be in this situation (maybe I would, no body knows for sure) but it is food for thought. My children will be made to play outside in the sun! If like me it makes them feel sick they will be given supplements just in case :) 

So - good luck in the sun! Keep the kids protected but outdoors to top up on Vit D and have fun. I shall be hidden indoors with my new friend the desk fan until my nemesis goes away. 

Start every morning with a hot cup of coffee

Around the time I was first diagnosed my mum used to be able to tell wether I was having a wobbly day or not. I couldn't work out how she knew when she hadn't seen me all day. 

After a while she said to me 'wobbly today?' I replied 'yeah a little bit how'd you know?' It was then that she told me that when I had a good day the floor was clean and dry but on a wobbly day there was a trail of coffee from the kitchen to the living room :) I hadn't even noticed that my coffee was half empty when I sat down.

I still use this as a test today. Only difference now is I'm aware I'm doing it so now it's like a medical test to have my coffee in the morning 

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! 

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!!!'

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 :)

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!

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. 

HAPPY CHRISTMAS to me!!!!

Now they just needed some proof...

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