Jooly's Joint: people with MS supporting each other

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Ulrika, Sweden Sweden


Ulrika on a horseIntroduce yourself!

My name is Ulrika and I am approaching 40. I live in Sweden, on the west coast close to Gothenburg. I have been married since 1986 and have 2 children, Julia, ten and Anton, six. I used to work as a language teacher but had to quit because I got so tired. Now I work from home as a translator and a copywriter, which I enjoy. Horse riding is what I love most in life and it is great that it also is such good exercise.

When did MS enter your life?

My first relapse, with numb legs, was in 1992, six months after Julia's birth. No diagnosis at the time. I know now that stress triggered the relapse, as I was breastfeeding, moving houses and studying fulltime at the university at the same time. Relapse number two came when Anton was one and my legs got really tired. My neurologist sent me home and said that it would heal spontaneously; it was only inflammation of the spinal cord. We moved to England shortly afterwards and in February 1998 I came down with the flu. Because of the high temperature, I could barely move at all. My GP sent me to the hospital and I was diagnosed with MS the following day. What a shock! I knew absolutely nothing about it, but I think my Swedish doctors suspected it from the beginning.

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

I'm not so sure I would have liked to have known more. Nobody knows what future has for me - permanent wheelchair or not - and there are still no good drugs. It is important to know that MS is not the end of the world, but I still have to fight every day in order to persuade myself that it is not.

Lowest point in your life with MS

I still find it difficult to do things like going to the cinema, concerts, etc. because I would have to bring my own chair. It is also extremely hard not being able to take the children to things when they want to. Not being able to play football with my son or skating with my daughter makes me cry. Shopping is also a nightmare - thank God for the mail order catalogues.

Highest point in your life with MS

Our family has always been close, but the relations have changed a bit since I turned ill. I am now very close to my dad. My husband is really wonderful, although he has little time for me because of his job. My parents live in the same house as us and my dad gives me a lot of support. He also takes me to the physio, picks up the kids and helps me in every way, as he is part-time retired. My sister and I have always been very close and go riding together. If I did not have MS, I would have to work fulltime and have less time for my kids. Now I am always there when they come from school and I always have time for their homework.

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

A positive approach to life is imporant. Try to focus on what you can, not what you used to do. I still find that very hard. Use the little energy to do things you like, instead of doing the cleaning etc. Try not to waste your energy.

When and how did you discover Jooly's Joint?

I joined the MS Society when I lived in the UK and as soon as I was connected to the Internet at home, I looked into Jooly's Joint. I have received a lot of information from it.

What keeps you coming back to Jooly's Joint?

It answers all your questions about MS and gives me support. It is great to know that you are not alone with thoughts, questions and fears for the future. It gives hope.

What are your ambitions?

I'd like to support myself as a translator and when it comes to MS I would like to be able not to think about it. To just walk normally again and be independent.

What message would you give to newly diagnosed people?

Be positive, try to exercise and do what you want to. Sometimes you have to be selfish.




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