Frances story - Living with MS

It's like the lodger. It's like the lodger that came to stay 20 years ago, and it won't ever leave. I go to the loo probably 6 or 7 times a night. And I have Botox in my bladder and my bladder's really good at the minute and my MS is still really good

But my God, I haven't slept through the night in. Yes, um. If I can get 5 or 6 hours uninterrupted sleep, I feel, I feel invincible

And I can't. I can't go too far today without knowing where the loo is. I can never go anywhere without knowing where the loo is, or the carrying of the pads or the radar key in my bag or the excuse me, I can't wait

As I rush past the bar in the pub, which is the only place that's open. There are things that always take longer. The planning of the execution of takes longer

There are things that's. Will be difficult in terms of balance and sensation, um. I was emptying the freezer that I'd inadvertently defrosted this morning and standing up, my balance went

And I was staggering and I looked like I was drunk. That's normal. I will

Not want to be. Out too long, too late. Today, because I want to try and get round Park Run tomorrow, and in order to do that

I need to go to bed extra early because I won't get a good night's sleep, cos I never get a good night's sleep, and tomorrow morning I'll be taping my knees up and I'll be running if I can, around Booton Park wearing. Those kind of massive incontinence knickers, because that's my reality and it'll probably smell, and that will be my reality. And all of those things need more time and more shopping and more planning

And That's leaving aside. I haven't had any particular flare-ups of symptoms in the last couple of months. But 2 months ago, I was struggling with sciatic pain

That meant that it was almost impossible for me to sit without real, real, real pain. And I figured out a few piriformis stretches, and I wrote to my MS nurse and I had an MRI done on my back, cause I've asked to go and see the neurophysio, because I'm struggling. I'm struggling in the way that I'm, I'm very fit

In some ways, I'm very active in other ways. But there are bits that hurt regularly, and there are bits that don't work regularly um. I couldn't feel my thumbs the other morning, and I've no idea why

But It was kind of like there were no thumbs for a couple of hours and then they kind of came back. Um, I can't set goals. I, I, I would really like to be doing some, there's some rides that I'd really like to do this summer

I can't realistically commit to doing those things until much nearer the time. And I often lose out. On being able to do things like going on holiday or making plans because I have to see how the weather is

Because extremes of heat can be incredibly debilitating, um. I have to be able to be unreliable in my life. So, not just in cycling terms, but

You know, you get invited to go somewhere and I'll be there if I can, is always my, is, is always what I mean when I say yes. I always say yes. But I say yes in the knowledge that

It doesn't always happen that way. And I can't always be there as long and I can't always. Be quite as shiny as I might have once been or as, yeah, as present or as reliable

So What would you say to someone who's just been given that diagnosis of MS? It's an absolute bitch. It's an absolute bitch who has come to live with you. And you can train it And you can accommodate it

And it will Yeah, it will. It will, it will pick you up and drag you around on a piece of string if you let it. But If you can find a way of

Understanding it and you and how you can live alongside one another. If you can find a way of accepting that you didn't really want it, but you've got it, and it's living in your house, in your body and doing its thing down here. Than your central nervous system, um

You'll be all right You'll be fine. But you need, you need to respect it. And you need to respect yourself

And in respecting yourself, you need to be incredibly incredibly honest. Not just with yourself. But with everybody around you, and that has a big impact on relationships

And particularly it has a big impact if you're a parent. Because you're gonna have to say to your kids, you know what? That's great, but maybe I can't. Being unreliable for children is hard, um, and you're gonna have to

Be different for people. With people that you've previously been, whoever you've been with. And that's hard

And there are gonna be days when it is unutterably awful because. You can't do the things you want to in the way that you wanted to do them. And letting other people down

Is way, way harder than letting yourself down. Cos you can adapt your own expectations of yourself. But Letting other people down in the bitch

But you'll find a way of doing it, you'll find a way of of. Being OK. And then if you can tell the world how you want to be treated as a result

Because you're not always gonna want to be wearing the t-shirt that says, you know what? But there are days when you do wanna be wearing the t-shirt, and that t-shirt says. Leave me alone. Give me what I need, give me what I didn't what I deserve and I respect

Treat me with some compassion and some kindness. And again, to be honest, that should be true of everybody. It shouldn't just be for the people with MS or the people with any disability or any lifelong condition, but

It's hard. And I remember saying once, I'd like a day now. Now that I've had it for 20 years

To not have it To have the body that could run and jump and climb trees and had knees that didn't give way and hips that didn't hurt and, A bladder that didn't leak and. And a sentence that could get to its proper conclusion rather than a tangent, tangential series of ramblings, um. I think I'd quite like a day

To see what that was like, but I couldn't. I could never do that. I can't go back to not having it

And I am in many ways, almost cured in that mine has been benign and very, very, very dormant for a long time. And I'm probably as close. To being Permanently in remission

As, as, as anyone can be. But there's always gonna be continent pants on the shopping list.