Hello everyone, wanted to start a conversation with people that’s going through similar experience and how they’ve delt with their own circumstances or advice.
I have RRMS and I’ve been going through a lot of change in the last few months. I was taking Gilenya for years but my white blood cells kept dropping too low, so you know how the neurologist recommends taking breaks and seeing if there is an improvement. Maybe half a year or more of this occurring every now and contantly dropping after taking the meds again. This has lead me to need to change medication, to the potentially scary Tysabri. Unwilling at the start, it was my only option and talking more in-depth with the doctor made me feel more at ease.
In the last 3 months, there has been complications in having the new drug. I’ve had to quit my job knowing I wouldn’t be able to go back into that line of work around a month of being off the drug. I’ve become sick multiple times in a row from fevers, colds, viruses since then. I’m not sure why I become so sick after coming off a drug that has been making my immune system so low? I had weeks that I was hardly able to stand from not having the balance, being shaky, fatigued, not being able to think coherently and struggling to express myself. A big change from being able to push through fatigue to do things on a daily basis.
Recently I’ve come to understand how low I have felt and continuously having the internal battle of I should rest vs I should do something. Along these months I decided that there’s no grantee I will physically be able to continue going to or carrying out the work I needed to complete the steps I needed for the career I wanted.
Now, feeling a bit more like myself, I am working towards becoming a freelance writer, being able to work from anywhere and be flexible in the breaks I need for my health. Appreciating the family support I have and my improvement of health, I am trying to not take anything for granted and plan for an unpredictable future.
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