Last reply 6 years ago
Seem to have crashed….

After my initial optimism about my diagnosis, this last week (in addition to a chest infection and subsequent exacerbation of symptoms) I am feeling really low and tearful. I’ve just spent the weekend with some of my family. With the exception of my [incredible] mum none of them have talked about my diagnosis, despite me trying to talk about it along with my fears. This really hurt me but I don’t know if I’m over reacting. I feel bad for piling it all on my mum despite her saying that’s what she is there for. I am a ‘talker’, it’s how I deal with things but the fact my family, and my boyfriend for that matter, don’t seem to be acknowledging it is making me lower and angrier….
I don’t know what to do or how to deal with it effectively, I’m afraid I’ve p***ed people off enough with my miserable demeanour of late 🙁

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6 years ago

Evening @ophelia
Sorry to hear that you’re not getting the support reqd. I didnt tell anyone for two years when I was first diagnosed! Please talk/vent/yell etc as much as reqd, PM me if you like too.
Sending you big sunday night hugs!!

6 years ago

was just the same for me with me before my diagnosis and even now really but think its a combination of your family trying to ignore the situation because they are trying to stay strong for ya and they think tgat by either playing it down or ignoring it it will scale down the significance of the situation in the hope it makes you feel like its not a big deal im sure they mean well its a syrange way to go about it but after talking to my family since my diagnosis and hearing how they felt and how they tried to help me this strange ignorance was probably their somewhat strange way of dealing with things coz dnt forget its a scary time for them too. plz dnt let it get ya down tho you will all get through this and in the mean timeif ya wanna talk im happy to ablige sometimes talking to someone without the emotional attachment to you can help it cetainly did me

6 years ago

I know how you feel Ophelia. This is a big deal and it doesn’t sound like you are over reacting. Just needing to talk about what you’re going through. I’m the same way. I need to talk about things when I’m stressed and I definitely know how if feels to have family and such ignore the issue and not talk about it with you. Makes me feel selfish or self centered or something…but its not. Talking things through and having a support system is very important.

It also could be that your family doesn’t quite know how to deal with the situation. Not sure how to talk about it. Maybe a bit of time and some encouragement will help them be willing to talk with you about it.

Just remember that you have everyone here to talk to.

6 years ago

I’m the same I honestly don’t know how to deal with it. No one seems to understand.

Just know if you ever want to talk I’m a good listener and it would be amazing to get advice from someone with a similar situation.

Take care and stay optimistic. God Bless.. Xx

6 years ago

Hi Ophelia (and everyone else…cos I’m new here!)

Ophelia, maybe your family (and boyfriend) don’t really understand how ms really affects you and the massive impact it has on your life and are therefore at a loss as to what to say to you? Or maybe they’re not talking about it because they don’t want to believe that it’s true!

I say that because very recently friends I’ve known for over 25 years sat down and opened up to me about the shock they felt when I was first diagnosed and how completely helpless they felt at the time. I have to say that they have from the off, been really supportive but they admitted that it took them a long long time to get their own heads round my dx, what it meant for me and how they could help.Now, they even raise money for ms!

My family reacted completely differently, they were & still are very upfront about it and aren’t afraid to discuss ms and everything related to it. Their support has been fantastic but perhaps more so because they know that much more about the condition.

Most of my friends (and colleagues) have been fantastic too but I have lost a couple of friends over it. One of them I’d known for many years too. That really shocked me because out of all of them he was the one person who I thought would be there for me, but not!

I guess what I’m trying to say is that people react differently. Some can’t accept it and bury their head in the sand because to admit that you have ms would be to admit that something is wrong and in their minds that simply can’t be possible because it only happens to other people….!

Does that make sense?

Take care of you

Debbie xx

6 years ago

Rubina, you say you have lost a couple of friends to MS, can I please ask how old they were? this scares me silly as we are always told it does not shorten your life just possible disability, I lay awake at night worrying about this al the time x

6 years ago

Ophelia take care and all the best to you 🙂

6 years ago

I was very cool about things the day I was diagnosed. I think it was a case of a consultant telling me what I’d known for years. I even went out for a meal that night, I was so glad just to walk again after being indoors for weeks. It then hit me on a time-delay, and some days I would just cry over nothing, and other days cry over stupid little things, like the Christmas tree falling over – that was five months after diagnois. Just go with the flow of it, you’ll get there and laugh at the bloody thing. This site helps too. x

6 years ago

Rubina, Sorry but I mis-read your email, I understand what you mean now when you said you “lost a couple of friends” just me worrying again as usual, was not a good day yesterday! x

6 years ago

Hi Loulou,

Just to put your mind at rest – when I said I lost a couple of friends, I meant that they ‘turned their backs and walked away from me’….not the other kinda lost.

If there’s one thing I have learned on this ms journey, it’s to take things as they come, to try not to worry about what may or may not happen in the future.

Of course it’s real easy to say that…..not quite so easy to actually do though. So when I do slip and start thinking ‘OMG what’s gonna happen’, I tell myself that regardless of their situation no one knows what the future will be anyway…

Hope that helps Loulou.

Debbie xx

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