Two months ago I felt extreme relief, I had been waiting to hear back from my ms nurse to discuss my medication. At that time I was desperate and couldn’t imagine having to take another shot of Plegridy so was extremely grateful to get the call just two hours before I was due to take it telling me to stop!
It was explained that my next steps in terms of disease modifying therapy would be discussed at my next appointment. That gave me two months to research and think about what to do!
It took about a month for side effects to completely go which has left a month where I’ve found myself again. The longer I’ve been off medication the more I’ve wanted to stay that way! I’m picking myself back up in the gym, not wanting/needing to get in bed after work and feeling much happier. It has been pointed out to me that I had lost my mojo but in reality I was becoming depressed while on it!
Now is the time I realise I can’t put off researching new meds any longer, I need to stop burying my head in the sand! It won’t go away if I don’t think about it.
So after a nice relaxing bath last night I decided to get the MS Decisions book out. Every time I think about trying something new I panic, feel sick and shaky! I read through each medication paying particular attention to the side effects… I can usually be confident I’ll get them ALL! The more I read either online or in booklets picked up at my neurology department the more I think that I can’t do it!
It takes a lot to make me scared but this decision has left me terrified!
If I chose to not take disease modifying drugs I risk unseen damage going on in my brain or spinal cord, I risk disability, I risk my eyes getting worse, I risk relapsing, I risk losing life as I know it!
I am absolutely terrified of a new set of side effects!
There’s no magic cure, there’s no guarantee whatever I try will stop the damage to my myelin, stop relapses or mean I have less chance of future disability! They don’t even know how some of the newer medications even work!
I really don’t know what to do and time is ticking away!
The closer it gets the more anxious I feel!
Which direction will my life take?
I have till Tuesday to think and worry about it before meeting my ms nurse to discuss things!
Sometimes I think it would be easier if somebody else took the decision out of my hands!