I guess I’m looking for someone who understands. I was diagnosed a month ago and I have already received my first dosis of ocrevus. I take daily steroids and use sleeping pills (which will run out soon) and I feel miserable. I feel like I am so alone, though I’m really no. I’ve been shown overwhelming amounts of love and still, no one gets it. I am so angry that this happened. I’m so angry. I’m handling it poorly.
I took it very badly too when was diagnosed and it certainly isn’t easy when scary things are going on with the body.
I get you, its so hard to get your head around it. I was diagnosed in June 20 with PPMS. I am up & down, anti depressants have helped. Reading too much about it in one go its too hard & depressing, we need to know but, Everyone is Different, no two people are the same, thats why it called the snowflaked disease. Your right, no-one gets it, until they get it, not really. Has the Ocrevus helped? My Consultant is putting my case to the panel for me to have it? xx
I am sorry you are feeling this way.
I too am recently diagnosed.
I have been up and down with coming to terms with it.
But with help from friends and family and rest I’m getting there.
Thinking of you
It’s OK to be angry and its OK to feel profoundly alone (particularly when in loving but uncomprehending company) and it’s OK to feel all those negative and painful feelings. There is no perfect way to deal with this sort of news. The way you deal with it is, by definition, the way that is best for you. Your system knows what it needs to do and when. That might feel messy and brutal and for many of us it is both, but that’s OK. The good news for the day is that this initial phase is just that - initial. And it will pass. We are resilient creatures, and it is amazing how something that feels quite like normality can reassert itself. Just in glimpses to begin with, maybe, then for longer periods. Personally, for months I couldn’t say the words MS without bursting into floods of tears. I don’t mean pretty, Hollywood tears, I mean wide-mouthed, incoherent, howling, streaming, snotty mess kind of tears. That made telling need-to-know people a bit tricky… All I’m saying is, please don’t think I am speaking from a place of having dealt with my own dx with any sort of calm at the time.
This stuff is hard, and there’s no short cut to getting through those difficult early days. I really think it’s just a matter of sitting tight, letting the feelings have their way, and wait for the storm to pass. Which it will. And then you will start to rebuild your life. For now, please just see it as an achievement to get through the day. You’re doing OK.
Who said you are. There’s no right or wrong way to deal. As time goes on you may deal better but that wont be more right. It’s early days for you so don’t waste energy beating yourself up!
I’m 30 and have RRMS diagnosed since 2016. I’m also now on ocrevus having been on plegridy for years.
I live a relatively normal life (whatever that is) with work a daughter and a fiance. As a family we have adapted but you find a way. So dont be scared! You can always come here to sound off to those who ‘get it’.
For me laughter is the best medicine, but sometimes I run out of that… not for long though. Sending you support with love xx