Hello all. You may remember that I got invited to Westminster to meet an MP and discuss the refusal to approve Ocrevus for PPMS, which my sister has. My hospital has said that I would be eligible, as I’m RRMS. Well, the MS Society asked me and my sister if we would be happy to release our story for them to use in the campaign as an example of the injustice of the decision. What this has meant, is that I’ve faced the decision of whether I/we should disclose our diagnoses, given that not that many people around us know (it’s been 2 years now). We decided it was for the greater good and have spent the last week telling all and sundry, including work colleagues, cousins, old school friends. So it’s been difficult and emotional but wow, what an unblocking! I feel quite liberated, and hadn’t realise how held back I felt. It’s just that inevitably, the news makes friends and loved ones really sad, and I hate that. But hey, I didn’t ask to host this monster. I feel like I have turned a corner and feel ready to fight the onward battle. I’ll keep you posted if anything comes of all this 🙂
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