Jooly's Joint: people with MS supporting each other

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Nessa, UK UK

NessaIntroduce yourself!

Hi! I'm Vanessa but everyone on Jooly's Joint will just know me as 'Nessa', or 'Nessa in Swansea'.

I'm 23, married to Ian with no kids, but two cats. I'm American, but live in Wales, UK and have settled here for the forseeable future.

My passions have always been music (I've studied classically, but enjoy a pretty eclectic mix), the arts, literature and writing. I'm becoming an increasingly fervent advocate of disabiliy equality, accessibility, and equal and ethical medical practice. I work for the Shaw Trust, a charity that helps people with disabilities to explore employment options and increased independence.

When did MS enter your life?

In the summer of 1996, I was just finishing my first year in Wales, was near the end of my university degree and had just made the exciting decision to stay in the UK. I was preparing to go back to visit my parents for the summer with Ian. My foot was a bit numb but i didn't think much of it until I was in the States.

When Ian returned to Britain my whole body stopped working. I was so angry at the doctors for 'wasting my time' doing useless tests like MRI! 'Why don't they just fix my slipped disk and I'll be fine?' Silly me!

I think my main period of denial happened before the MRI results came back. Seeing the plates really helped. I couldn't deny those white spots on my brain.

At first I was terrified that it was a brain tumor... MS was almost a relief. The new life I had built in Wales seemed to be hanging in the balance and I was determined not to let it fall. So I returned to Wales in the autumn of '96, despite my new diagnosis and lots of advice to the contrary. Part stubborness, part determination... doesn't matter, it was the right decision.

What do you now know about MS that you wish you'd known when you were diagnosed?

That it could happen to me!

But as far as things about the illness itself, I think that it was better that I didn't know anything about it. I could start from the beginning without having to unlearn misconceptions.

Lowest point in your life with MS

About a month after getting married my father died, and we returned to the States for a few months. A series of relapses and remissions began that just didn't stop, and each time I relapsed harder.

After we returned to Swansea our landloards decided to sell the house and we were forced to move. The move caused a 'final straw' relapse that put me in hospital for 3 weeks til I discharged myself against doctor's orders.

I had vertigo so badly that everytime I moved my body, I was motion sick. Lying in casualty (ER) at 3am too weak to move and hallucinating from pain and dehydration while the nurse sang pop songs or ignored me for hours was pretty low.

Highest point in your life with MS

I think it has to be the present.

Avonex has stablised my relapses and now it's a day in and day out thing.

In August I will have successfully completed my first year of full-time work since diagnosis, and in September I will be going back to university to finish the degree I had to put on hold for MS.

I've reached the point where I feel that I know my body well and I can tell how it will react to different situations. I have learned ways around various problems. I have come to the stage where I am proud to 'own' my illness and proud of my experience with it, and I feel better about myself because of that. I don't feel like I'm fighting all the time anymore, I'm working with what each day gives me.

What do people with MS need to help them enjoy fulfilling lives?

I believe that a stong sense of identity (who am I?) leads to self-confidence, which will lead to the breaking down of limitations, barriers and labels. It all needs to be supported by family or friends or a faith, people who will listen, understand, believe in and accept us.

When and how did you discover Jooly's Joint?

About 6 months after my diagnosis. I was sitting in the university library, where I did my first Infoseek search for "Mulitple Sclerosis.

What keeps you coming back to Jooly's Joint?

The support that I mentioned as being so important. Hearing someone else say 'Yes, I know exactly what you mean, you haven't imagined it!'

It's great to have the benefit of people's knowledge and experience from all over the world. We all need support and someone to tell us we're not alone. Jooly's Joint breaks the isolation!

What are your ambitions?

To finish my work contract and go on to finish my degree. When I get there I'll look at the next step. From now on it's got to be one step at a time.

What message would you give to newly diagnosed people?

When I was a little girl I used to watch a cartoon. The cartoon taught a lesson, and at the end of each episode a low voice would say 'Now you know. And knowing is half the battle!' Cheesy, but true!

Knowing about MS and your own body will empower you to get through the rough patches. Read, read read. Knowledge, choice and discernment are so important. Don't let others decide what is best for you. Only you will know. But be informed.

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