Yesterday, I turned 50. There's something about that particular milestone that made me determined to try new things. Maybe because 50 is the new 40. Or maybe because I was so ill on my 40th, and for some time after, that it almost passed me by.
I've done quite well so far this year, not least with an epic 3 weeks of travel to Scotland, Norway, Iceland, Switzerland and Germany. I went on a cruise. Then I travelled on my own with a wheelchair and a suitcase, through Reykjavik. flying down to Switzerland with the midnight sun, then by bus, tram, train, various boats and a cable car - just to see if I could. Not only was it possible, but I have the photos to prove it.
Many people have suggested that I should write a blog about my adventures, but life is more than just travel (sadly). When I was 25, I was diagnosed with Multiple Sclerosis (MS). People often exclaim that it was so young, but no. It's a fairly typical time to discover that your life is not going to go in the direction that you thought or hoped it would. Living with any serious or chronic illness, or any disability, is a series of challenges that you may or may not have the energy to face. Life will be different, but that doesn't mean that it will be worse.
When I was first diagnosed, I wanted to know what the future would hold, but there was no way of knowing. In those days, you would get a magazine from the MS Society every month with an inspirational story about someone with MS who had run a marathon, gone skydiving, had six children, become a model, run a successful business and cared for an ailing relative, all before breakfast, AND managed to juggle a full and satisfying social life. It generally made me want to punch that person, so if anyone ever reads this and feels that way, I can only apologise. That isn't the story for most illnesses and disabilities, so I don't want to make it seem like it's been that way for me either. Especially at the start, I had endless relapses, had more treatments that failed than didn't, had to take loads of time off work and ultimately gave up the job I was doing at the start of it all, not to mention the hours, days and weeks in bed because I just had no energy or I was in pain, or the medication that dealt with the pain just wiped me out. There have been times when I've all but given up. But then I've picked myself up off the floor - quite often literally - and tried again. And again. And again.
My story didn't end there though, because I've learnt to live with MS. It's been there for 25 of my 50 years. Not a milestone worth celebrating, but I don't really remember what it felt like not to be disabled anymore. I've had 25 years to try lots of things and find some that have been genuinely lifesaving. OK, so not literally, since MS won't kill you, but things that have seriously improved my quality of life. Treatments have moved on, and I've gone through a few. Disease-Modifying Drugs/Treatments for MS were a fairly new thing back in 2001. I tried three different Beta Interferons (none of them worked), then Tysabri (I had a mild reaction), then finally Gilenya, a 'miracle' once-a-day pill that stabilised things for me and has kept them that way for more years than I can remember. We’re all different though, so it isn’t the best answer for everyone. There are newer and smarter drugs these days, but if it ain't broke, don't fix it. I've taken a bunch of tablets for symptoms, then come off them all because someone told me I was taking too much medication, then one by one got put back on exactly the same things. However, one by one, they have all been changed over time and I now have a selection of tablets that are better with fewer side effects. It's still about 40 tablets a day though, which would be enough to fell a large horse, had he not become gradually acclimatised to them.
So, what is this blog about?
Honestly, people have suggested that I write about all sorts of things. Going camping with a mobility scooter. Living on your own with a disability. Working when chronically ill. How to choose a Motability car. How to find somewhere accessible to go on holiday. Travelling the world solo with a wheelchair. Travelling solo as a woman. I'll probably cover those things, but I'm not making promises. I often find myself saying, "It's all about the strategy!" So maybe I'll write about that. I'll probably recommend some stuff that makes my life easier, and I'll almost certainly moan about accessibility, just because sometimes I need to get it off my chest.
The thing is, we all face challenges in life. Everyone has something. That may be a disability, but it may be something totally different. You may have gone through a relationship breakdown or loss of a spouse, leaving you alone or as a single parent. Maybe you lost your job. Maybe you are battling addiction. Maybe you find yourself homeless. Maybe you've been through a natural or manmade disaster. Or...or...or...there are so many things in life that can make us want to give up. So this blog is really about resilience, about holding onto hope and maybe reimagining the way forward if things didn't turn out the way you thought they would.
I am writing this in the hope that someday, somebody will read this when they just need a little hope for the future. Hope that they will graduate, get a job, make friends, find a partner, have children, find somewhere nice to live, go on big adventures... whatever it is that they are concerned about. I haven't done all those things, but I do know people that have, whilst coping with a whole range of challenges, health-related or not. I'm not going to tell you that you can do anything you want if you try hard enough because it's simply not true. But it is true that when God closes a door, he opens a window - even if [Spoiler Alert!] that's not actually a quote from the Bible. When one avenue is closed, there will be another one that opens up - even if you have to kick down a wall or two in the process. So, I guess this is also about making the most of the windows God opens for us. And above all, Not Giving Up.
Helen