Living with Multiple Sclerosis: A Bristol Mum’s Story

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Last year, one Bristol Mum reader’s life was turned upside down when she was diagnosed with Multiple Sclerosis (MS). Today Sally, a mum of two young children, shares her story with Bristol Mum readers in the hope of spreading awareness and information about this condition…

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Diagnosis and early days of living with MS…

I took voluntary redundancy from work two weeks before and two weeks later I was in Frenchay.

I went into hospital for an MRI scan, thinking it was labrynthitis. They showed me the inside of my head and it was full of white blobs, they said that they thought that they had better admit me to hospital.

I went downhill from there. Because I was in hospital, physically I just gave into it. I wasn’t really there, I had to learn to eat, poo, talk, they kept moving me round different wards. My uncle who was fairly high up in the NHS was trying to pull a few strings, think he pulled the right ones. They kept going into loads of meetings.

I think I had someone sit with me at night, apparently I kept trying to escape. I had lots of vivid dreams. As I got better, I got more frustrated about being in hospital, I kept asking when I could go home. I was under professor Scolding. Anyone who has MS in Bristol knows who he is and know he’s good. So I had lots of tests for him, a lumbar puncture which is where they stick a needle in your spine, I had that a few times.

All the staff were very nice, I remember a few nurses who were lovely. The nurses were really nice, I’m in touch with a couple of them. There are a few people who stick in your head.

There was a guy with tattoos who used to sit with me. Some people just come and sit with you if you want it. I liked him, he was really nice. It was nice to have a young man sitting with me! I even got a tattoo which says “I will overcome this” in Latin.

Sally

Sally’s kids’ experience of early days of MS…

They were aware I was in hospital. They remember Nana coming to look after them so Dan could come into hospital with me. They came into visit me a couple of times but I didn’t want them to see me with all the tubes out of my orifices – mouth, bladder, etc.

We’d take them in the park at Frenchay Hospital, they got to come into the ward, it was good for them to see where their mum was.

What it feels like to have MS…

Most people get MS gradually. I haven’t met anyone with the same type of MS as me yet.

I had no idea what MS was. I read online about it, there’s so many levels of it, levels of disablement. Everything moves, if I sit still, everything moves.

It’s like being a drunkard all the time. It’s hard work getting up, making the kids their breakfast, taking them to school. I like to get home to recover.

Is there an end to it? No, there’s not an end to it. Once you’ve been told that you’ve got MS, you just have to learn to overcome it.

It doesn’t hurt, it just feels like you’re drunk all the time. It’s not a hurting illness. Well, it hurts you inside.

Treatment for MS…

No drugs, just time. Doctors like to leave it a year to see what you’ve been left with. I begged for drugs.

I tried cannabis as I had heard this works but it made no difference. Apparently, there’s certain things in it that help MS. Actually, having a drink makes me feel better; it makes me feel more normal.

Is there an end to it? No, there’s not an end to it. Once you’ve been told that you’ve got MS, you just have to learn to overcome it. I had no idea what MS was.

It doesn’t hurt, it just feels like you’re drunk all the time.

On being a mum with MS…

It’s hard work, well, more hard work than normal. We live by St George’s Park, we don’t go there so much any more but the kids don’t mind that. Before I had MS, I think I was a Supermum, I did everything. Now I’ve got MS, I have to slow down. I don’t do slow – well, I didn’t do slow.

Louis is 6 years old. He’s very good, he holds my hand walking to school. Zach is 4. I find he doesn’t really get it but Louis does. I have had a few falls in the park.

Support and services for MS in Bristol that Sally found helpful…

The MS Therapy Centre in Bradley Stoke where you can get all sorts of treatment: physiotherapy, etc. Sometimes it’s nice to see someone worse off than you.

Sally’s advice for you if you know someone with MS…

Don’t make an issue out of it but somehow be there for them. Help with their children.

I’ve got family around. I think if you’ve got a good network of friends and family that helps. I’ve got a good mum friend who picks Louis up and takes him up the hill to school.

On living life to the full…

I’m taking Louis out of school to go on holiday, we’re going to stay in a castle in Tenby. I’m going to try to get back on my surf board. We’re staying in a castle on the beach.

I’ve got to go out tonight to a bar with a friend. My husband’s a bit worried that it’s too far but I say it’s okay!

I was an Accounts Manager for Dupont. I’ve just asked them for a temporary job. In the future I’m hoping to get a lecturing job at UWE.

It’s really good to ride a horse, good for your core muscles, it’s good for your spirit too, just to get out, to be free.

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If you would like more information about Multiple Sclerosis, please visit The West of England MS Therapy Centre website.

If you have a story to share that you would like to share on Bristol Mum, please email me (Hilary) on bristol_mum@hotmail.com. Your story can be completely anonymous if you wish.

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