Have you ever met someone and thought, I don’t know how they do it? Their story of what they have achieved with their life, or what they manage to fit within their day astounds you. How do they manage to get all that done and still remain so positive and focused? Or possibly its been the opposite, you have met someone and thought why are they not able to achieve more?
My son was four months old when my first obvious MS symptoms presented themselves to me for the first time. By the time I reached my diagnosis he was eighteen months old. The decision to have more children was not an easy decision though it was a decision that came quickly. Not wanting to play the wait and see game, we jumped in and starting trying to conceive.
When my Dr and I discussed the possibility that I may have Multiple Sclerosis, I went home and started searching for answers. My search led me to a website for people with MS, created and managed by someone with MS themselves. This website provided me the opportunity to chat with people within Australia who were living with the disease.
They say that, illness, being a parent, and living in a rural/regional setting can all isolate you from the world. I just happen to tick all three of those boxes. There have been times especially in the past five years since my twins arrived, that I have felt the immense pressure of isolation.
Today is the 6th year anniversary of my diagnosis with Multiple Sclerosis. I do not celebrate, (ok I may use it as an excuse to eat cake!) or commiserate, though I do acknowledge this day each year. I like to take a moment and look back over the past 12 months and see what I have managed to achieve regardless of my MS.
For someone who goes to sleep each night and wakes up feeling refreshed I can understand how it could seem inconceivable when they hear about someone who is always tired, no not just tired fatigued. Fatigue is one of the most common symptoms in Multiple Sclerosis, and it is also one of the most difficult to explain.
This post has been a work in progress for a number of weeks now, as I wanted to give this topic the respect and honesty that it deserved. It has been challenging, and with that I hope you can leave any preconceived ideas and judgements on the shelf and take this post for what it is intended.
My husband is my part – time carer, without his help I would not get through the day. There are some days which are better than others, where I don’t need his help as much. MS has created limitations for me. It has been a hard thing to accept. When I started dropping the pieces my husband stepped in and started picking them up.
Last week I had my MRI followed by an appointment with my Neurologist. I was given excellent news, actually the best news that someone with a degenerative disease can be given. Clinically my Multiple Sclerosis is stable and has been for the past three years. This also means that my Neurologist and I have stuck with the decision for me to remain treatment free.