Forum

Not sure what to feel

Hi Well it’s official, I have been diagnosed. At 44, so older than the “norm” from what I’ve read. Trouble is I’m not sure how I feel. On the one hand my neurologist was really positive and made it seem like not the end of the world and that I should try and put it to the back of my mind, and that the drugs are good these days. And at the moment my symptoms have been very mild indeed. On the other hand I read about all the things that can go wrong, and I’m scared. Really scared. And then my Ms nurse rang, her role is to be with me on my “journey”. But I don’t want to be on a journey! I don’t know who to believe or what to think any more! I was doing ok, actually had my diagnosis a few weeks ago, but its suddenly hit me, all the what ifs. Sorry to bore anyone who was about when I first posted, but our lives feel complicated enough. Our 2 year old daughter has a rare chromosomal disorder- we were told (quite bluntly) she would live for days and have no quality of life. She is nearly 3, very happy and loving, but developmentally delayed and we have had quite a few hospital admissions including ICU, two operations, and a near miss at home. So it felt like we had quite enough to be brave about, philosophical, seeing the bright side etc. But where is the flipping karma?! I get so angry when people who don’t seen to care about anyone else seem to waltz through untroubled and the sheer unfairness of it all. Why us? And what to think… I don’t want to be a victim and I want to be able to refocus on the positives, seize the day and all that, but I’m scared. Meanwhile we are trying our very best to give our 6year old son as normal and happy childhood as possible. Thanks for listening x

I think Karma acts on rather longer timescales than we would like sometimes! - it would be very satisfying to see the provisional wing of Karma deploy short-range now and again, but there you go. And if anyone had phoned me up when I was newly dx to tell me that their role was to be ‘with me on my journey’, I would have thrown the phone out the window - I think you did well not to do this (maybe you did, of course). Seriously though, of course you are raging against the unfairness of it all. Why would you not? An MS dx is all kinds of bad. I am sorry that you have had this grenade thrown into your life.

And it will take time for the idea of having MS to stop looming so large in your consciousness. Of course it has come straight in at No 1, but it won’t stay there for long, really it won’t. The balance of your life and your family life will reassert itself and you will find a way of slotting MS into a more appropriate level in the hit parade - and I don’t mean just in terms of the challenges you face, I mean in terms of the sweet things in life as well as the troubling things. It will settle into being part of your life, and you will accommodate it into just the way things are.

So you rage away. How else is a person supposed to react? But know in the back your mind that you will find a way of making a good life for yourself - people do and so will you.

Alison

Hi I can totally relate to everything your saying it is (filtered word) and hell of a scary as I’m newly diagnosed too…nobody can tell you what’s going to happen or how bad it’s going to get we all imagine ending up severely disabled and being unable to do anything but I think the reality is hopefully somewhere in the middle!..and I get that karma thing too there are some people who sail through life and nothing ever goes wrong but maybe as Alison says karma may bite them on the bum somewhere along their pathway it maybe takes a bit longer than we would like!..you seem to have been dealt a tough hand and you must wonder why?..but I think one thing I have learnt through all this is the trivial things in life don’t matter now and you just have to face whatever is thrown at you as someone told me you sink or swim and you sound like your swimming maybe doesn’t seem like it now but you will get through it!..so scream shout and be angry and once the dust settles you’ll find a way of coping!..these forums are a great support so hope you feel better soon I didn’t think I would but I have most days but I have my moments when I least expect them!..take care Emma x

Hi both Thanks for your replies. Very true yes the trivial things stopped mattering a while ago. We have found great happiness in our other adversities but at the moment the whole MS thing doesn’t feel like there is much in the way of silver linings! Xx Ps no I didn’t throw the phone out of the window, and I think the journey thing must be part of NHS training as our community children’s nurse is also with us for our journey, so many journeys…