When Diagnosed: 2011
Type of MS: Not Known
Location: Melbourne, Australia
Here is Roseeu's story:
I am 39. I was diagnosed with CFS at 19. I was diagnosed with Lupus at 38 and MS three month later in 2011. I do not want to focus on which MS I have right now as it is still bothering me I have MS. I have severe RLS too and that is a bit of a nightmare for me.
I have always known I would have MS though. I kept going back to the neurologist because I knew my diagnosis would be MS eventually. I had a lumbar puncture at approx. 25 and I was positive for oligoclonal banding and I had nerve damage in my MRI. I knew that they did not want to diagnose early and I felt sick neurologically.
I have lost nearly all the friends I have. The ones I have are waiting to see me. It is also hard to place the limits that I have on social times but I have no choice because I am in a lot of pain and very tired. I have become very isolated because I have been mainly bedridden only functional a little and trying to do chores in that time.
I have little family support. Only my mother tries to support me from a distance. My father will not accept me for many reasons and he is sick now with cancer. I do not have relatives in Australia and my brothers do their own thing.
I have a Bachelor of Science and a Graduate Diploma of Human Nutrition. I love poetry, cooking (if I can manage) writing, books, aromatherapy, soap making (if I can manage) and many other hobbies.
I am desperate for a wheelchair right now. I would like to finally be free to do things. I can walk, but not far so it does not count for doing much. I would love to go to libraries, see things, and have days out.
I am not my illness. I would like people to see me around my limitations. I can be a good friend to people because I am compassionate, loyal, funny, loving and decent. I love a good conversation and love many topics. I love a scientific one sometimes too and miss my profession or studies.
My best feature would be my smile. I am saying this because people compliment me all the time and I am always humble about it.
I would really like to make friends. I am able to consider people's different needs and able to be supportive while having time to chat about different topics.
I want you to know that you are not alone and that people are alone in Melbourne too thinking that they want to speak to others and share happiness and support in life. Anything in life is possible.
I try to be creative and have initiative. There are no boundaries that are social or psychological as they can be overcome but physical issues are tricky so we must try to be creative. I do believe we should manage our life the way we think of and do not worry what people think. Do not follow a pattern of what is expected of MS and what an MS patient is regarded to appear. If you want to walk one hour and use a wheelchair the next then you should as you know how you feel and what you need to manage your condition. Just do what you know, what you need and in any creative way possible. That is what I believe. If I am limited physically I want to resist all other barriers.
If I want to ride a bike I will but I cannot balance ha ha but if I could I would use that one moment and my wheelchair the next. I would not care what my neighbors think. If anything helps you live. Then live and live your way. It is not easy and people have their "two cents" worth all the time but you must do what you need and focus on what you know you need and go with the changes. You do not have to be disabled or not or appear that way or not. You can appear whatever and how ever you want and do what makes you live your life to the fullest.
When I was young a boyfriend told me take no prisoners. I always did. I am trying to be free to do what I need.
I am new to this website.
Thank you for reading my article.
I looked up 'weak' in the dictionary
To be deficient in strength and healthy vigor
To this I come across quite contrary
Always holding a smile and never a snigger
This is part of a poem I wrote. One day I hope to get to know this website more and put it up.
I wish you well and I am thinking of you. I am comforted by your presence.