I can’t believe it’s been four months since my last post. As the saying going ‘time flies when you’re having fun’ aka landscaping your garden, running a part time jewellery making business as well as working full time, going on holiday and the list goes on. I’m not complaining about being so busy – it’s great being able to be so busy.
I’ve intending to blog numerous times – I even had a list of ideas on my fridge. Interesting articles in Women’s Health Magazine that were relevant to my MS featured heavily and of course my milestone. In June I had gone a year without a relapse. But I’m easily distracted! I’ve concluded that I need to be trapped to post! Trapped may be an exaggeration but sitting in a hospital chair hooked up to my four weekly Tysabri infusion makes it difficult for me to do other things. Which is why I’m writing this now though intermittent WiFi means it probably won’t be posted until later.
I don’t really have any thoughts on my one year milestone now. I’m not sure what I expected to feel – it just kind of past me by. I think my real milestone was ten days ago at Reading Festival when I realised how far I had come in a year. I had gone to Reading Festival in 2013 still accepting that I wasn’t as physically able as I used to be, seeing myself as different from other people. Determined initially not to use the stick which I’d bought specially, not to go on any viewing platforms. That weekend helped to change me – helped me realise that ‘I wasn’t giving in’ if I used those things – I was adapting.
A year on, unfolding my stick, I have no problem with using it. I know that on an uneven grassy field wearing boots (having lived in flip flops for months) I’m going to struggle to balance due to the feeling in my feet. I also know that sometimes I’m going to need to sit down, that I won’t always have the strength to get pushed around in a crowded tent, besides the views from the platforms are awesome. Because I don’t want to miss any of it, I want to be there all day every day. No longer scared of using my stick it amazed me how many other people I saw with walking aids including lots of people far younger than me. I never was different – I just hadn’t been able to see it last year.
If you look at it the other way (and I know it tends to sound cliched) we are all different. Most of the time you can’t tell I have MS by looking at me – my illnesses is hidden away. Just like my friends with stomach conditions, auto-immune conditions, anxiety disorders, depression and a husband with Bipolar Disorder. It’s easy to build up to a milestone but actually I think the milestones let you know when you’ve reached them like they did me at Reading.
Listening to my favourite band of the festival play I thought about my life with MS and just life in general. I know why I’m so easily distracted, why I’m busier now than I’ve ever been – it’s because I know right now I’m probably feeling better than I have for six years. I also know that there is no cure (at the moment) for my MS, but I’m managing it the best that I can so I want to make the most of being able to do things when I feel well. One of my favourite books, the journals of Dan Eldon is called ‘The Journey is the Destination’. Though tragically killed at a young age they show just how much he ‘lived’. Though ultimately sad his is an inspiring story. I don’t want to be someone just waiting on a cure, afraid to do the things I want to do.
I’m learning to know my body well enough now to know what I can and cannot do. Four songs into the Augustines set, I can see that I’m not going to get pushed around as long as I don’t go too near the front. I make my way into the crowd, stick in hand and get lost in the music – just like everyone else around me.