My experience with disability - understanding MS

Me, Lake Wanaka, NZ

Me, Lake Wanaka, NZ

"What other people think of me is none of my business"

- Dr Wayne Dyer

I never thought I'd ever need a walking stick, maybe when I got older. But I always considered myself fit and healthy, and if I kept that way never needing something like that in my future. It was a completely surreal experience. I kept thinking I was going to wake-up from a nightmare, I would dream I was walking, running even, and then wake up and realise the reality was much different. 

About 4 weeks after my relapse I was in rehab and I was visited by the rehab doctor. If your familiar with hospital stays you'll understand it's usually a head doctor accompanied by a few junior doctors or students so suddenly you have a little team around you all listening intently. That was almost a daily occurrence for 9 weeks. At this stage I was walking with a walk belt. Which is a massive velcro belt with handles on it - a great rehab accessory!. My boyfriends mum was visiting at the time and keeping me company. We would go on walks around rehab and whenever I would freeze-up she would grab me from behind so I didn't fall over. When I freeze and I mean can't move my feet - they would literally be stuck to the ground, I also lost all sense of balance, my eyes would go blurry and my speech would become slurred along with very graceful jerky movements (if I tried to move).

The doctor said to me I'd most likely have to leave rehab with a walking aid of some kind. I was devastated. I couldn't even picture it. I was so determined to walk again I didn't expect that I would ever have a walking aid, I thought I could do it on my own. I remember telling him my specialist thought the freezing episodes would go away soon and i'd be fine. But he hung his head and said nothing. Looking back he probably knew I was going to need it long term, he just couldn't tell me. 

However after another week and numerous freezing episodes later I decided in order for me to be independent when I went home and not fall over and hurt myself I needed something to help me. So my very kind physio gave me a walking stick from the gym. It was pink floral, the only one she could find, OMG I looked like a nana! Anyway it was only temporary I kept telling myself.

After Bens mum left I was facing my first week alone in rehab, before that I always had someone with me everyday to support me when I froze in mid-space, otherwise I would fall over. So I had to start using a wheelchair myself for the first time and this one had flat tyres, not the easiest for someone with the worlds smallest arms and limited strength. MS had sucked all my strength and I was still trying to get it back. I nicknamed myself mrs puniverse in hospital as my weight plummeted to 43kg, 10kg's lighter than my normal weight, I'm 5'8 so it was incredibly tiny for me. It was something we could laugh about at a time when laughter and happiness had been cruelly replaced by sadness and worry. The weight loss I would say was mainly because of muscle wastage and at my worst an inability to feed myself or tell people I was hungry.

Just before I left rehab I had an assessment by another rehab doctor famous for his terrible bedside manor and instilling nervousness and terror in his med students. He made me do a series of things including getting down onto the floor and getting up again. But he then made me walk around rehab on my own without a walk belt which I'd never done before. I was absolutely terrified of falling over. At the level of disability I had I felt incredibly fragile and vulnerable both physically and emotionally. MS had put all my emotions on my sleeve. He yelled at me to try and get me to push through the freezing episodes. Needless to say I fell on him. I don't think he realised that I actually did want to walk properly again and no matter how hard I tried I couldn't push through these crazy freezing episodes. He just made me so angry and upset. He asked what I did for a job, I told him I worked in swimwear as a production manager. He told me to forget about that and go back to customer service after he asked me why I work in swimwear. He told me I looked no different to other people and no one would know I had MS, in a very flat almost condescending way like it was what he said to all his MS patients. It was all very confronting like I had been dealt a series of hard truths in one huge dose. I literally felt my old life crumble away as a new life of disability, discrimination, worry and uncertainty took over.

One of the young nurses visited me afterwards with ice-cream because she could see how upset I was. And my physio told me she had stood behind me the whole time. The staff at this rehab centre were just so lovely, they have the biggest hearts. These girls were also my age, and were baffled as to why and how I got to where I was. They were inevitably shocked when I said this is MS and I have no idea how I got it. One day I was normal, the next I wasn't.

I finally got home and Ben and I would go for walks. I walked to the shops with him once. I told myself "what other people think is their problem and none of my business" and my long distance vision wasn't very good so I couldn't really see people's faces. Also I hadn't developed the ability to look around while walking so my focus was purely straight ahead. However on this occasion a group of young guys walked past me and laughed, I don't even know if they were laughing at me but I felt so vulnerable I took it onboard. It took a lot of adjusting to being a young girl with a walking stick. Here I am surrounded by young, fit, healthy, beautiful people in what's ment to be my prime years and I feel like an 80 year old woman. I had been so highly functioning prior to my diagnoses. I've since read that most people who have MS are very highly functioning previously and hate relying on others - maybe it's something in our personalities. I use to run long distance, do zumba, yoga, walk everywhere, I use to use my body as much as I could because I was able to and I liked way it made me feel, moving around and being active and healthy feels good. 

When I was out and about people liked to ask me what happened. I think they expected me to say I had a car accident. But when I told them the truth they would most likely go quiet and look at me sympathetically. I didn't want sympathy I just wanted to get on with it. I had an experience once where I froze-up in a chemist when I was being served and I don't think they initially saw my walking stick. Usually when I freeze people look at me strangely trying to figure out what's happening as my speech is compromised and my body language becomes jerky, I essentially loose the ability to communicate with them in all ways and have to wait out an awkward 30 seconds till I come right again.  Once my episode had subsided I told them I had MS, the lady told me her daughter has it to. They quickly scrambled to put my items in a bag so I could carry them with my stick and were extremely apologetic.

As my confidence grew I was walking longer distances still with the stick and it was so liberating to have some independence back. I was able to do one of my old walks around the coast that I had dreamed about in hospital. I had a couple of experiences where I would freeze in the middle of the road, luckily I live in a fairly quiet neighbourhood so I got lucky with traffic. I once had a young man toot profusely at me when I'd frozen in the middle of the road. He wanted to turn in front of me and was trying to signal to me to walk ahead, but of course I couldn't. Cars would literally stop to let me cross the road - probably because they'd taken pity on a young girl with a walking stick or they're just being polite. However you can't move when your frozen. I somehow signalled with my hand for them to keep going. I've had older women ask me if i'm okay or did I need help and also tell me I'm very brave, they were the loveliest. They had the kind of empathy and wisdom only older people have, from a life of experience. But the best of all were the young kids. They loved a good stare. Turning their heads while walking past me, to a point they couldn't possibly oscillate that head any further.

When I walk down to the beach from my apartment I walk past a cafe. I must have passed that cafe dozens of times. I recently went in there with mum and they were asking me how I was going and what had happened to me, genuinely interested. I think all in all I've been really surprised by the attitudes here. People are mostly concerned and want to help you. It's very comforting to know that you have support in your community, especially in people you don't know.

I have finally gotten to a point where I can get away without the stick. I get a little warning when I'm about to freeze-up, my eyes go blurry. The episodes aren't as aggressive as they use to be so I just stand still and wait for them to pass. Also they aren't happening as much anymore and I can even walk through them now (somewhat awkwardly) - huge progress! I'm taking it as a sign I'm getting better and that's made me pretty happy indeed.