Thursday 17 October 2013

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. 


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 
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😄)

Friday 30 August 2013

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 :) 

Saturday 3 August 2013

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) 

Wednesday 10 July 2013

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. 

Monday 1 July 2013

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 

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!!!'