I’ve just been diagnosed with relapsing remitting MS, but at the moment I don’t feel like I can even begin to accept or deal with what’s happening because my life feels like it’s imploding. My behaviour in recent weeks has shocked me - from pretty benign stuff like swearing more to engaging in a relationship with a guy I’ve met online. Im married, and my husband knows I have been talking to this guy as a friend but it is getting more serious with each passing day. Im a rational person, never behaved like this before, and I know my behaviour is bad but I can’t stop doing it. I have No idea where to turn to in this moment, and the lack of sleep from steroids, constant headache and lack of capacity to make a plan is just getting worse by the day. Apologies for the bluntness but I don’t know how else to tell this story and I’m just looking for something that will help me move on. Is there anyone who has experience of this who has some advice they could share? I want to get better but he longer this goes on I start to panic that I can’t.
It sounds like your emotions are in a turmoil, perhaps as a direct result of the diagnosis. But were you completely happy before the diagnosis? Or is the diagnosis somehow allowing you to (apologies for the American phrase) ‘act out’?
I think an MS diagnosis is an absolute sod of a thing to get your head round. And there are many of us who swear like troopers; in a way it helps to express your absolute fury that this uninvited bas*ard has moved into your life. Sometimes it feels like you will from now on relate to the world in terms of your MS. This isn’t true. If you have started, or are soon to start a disease modifying drug (DMD), then you are likely to find that relapses are few and MS will be something you can live with.
Have a look at https://www.mstrust.org.uk/about-ms/newly-diagnosed There are lots of useful bits of information on there which could help you to understand what’s going on in your body and your head at the present time. Also, see https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid if you’ve not yet chosen, or started on a DMD.
With regard to your relationship with the online man, you need to get a handle on why it’s happening. Were you and your husband happy until this time? If so, what are you getting from the outside relationship? Is it now a ‘real world’ relationship, or is it so far just on line? If it’s still a virtual relationship, you should be aware that it could cause your marriage real harm if you let it continue, but while it’s not a real life thing, it’s redeemable.
Think about talking honestly to your husband about what’s going on in your head. By no means is it unusual to react quite extremely to an MS diagnosis. Or, you might find that seeing your GP and asking for a referral for some counselling would help if that’s possible.
And keep talking to us on the forum. We’ll try to do our best to help.
It sound as though you are fighting on too many fronts - no wonder you feel overwhelmed and out of control.
Steadying the ship and re-establishing your sense of agency seems to be a priority here. My suggestion would be to turn your your full attention on the thing you have some control over: your personal relationships. There is damn all you can do about the fact that you have MS, unfortunately. Maybe the best thing for you to do right now is to step away from the MS business and concentrate on adverting a crisis in your personal relationships: that’s the area you DO have some control over, if you give yourself some thinking space. Once you have reached calmer emotional waters, it might be a little easier for you to start dealing with your MS diagnosis. One thing at a time.
Hold on tight – you will get through this. Good luck with it all.
p.s. Steroids turn my rational mind to mush also, so you’re not alone.
“emotional lability” is a phrase i learned following iv steroids.
knowing there was a medical term for my uncontrollable temper helped me to calm down.
if you google emotional lability there is a link to the national multiple sclerosis society.
although this is a a site from the USA there is a paragraph about “MS can occasionally cause inappropriate behaviour” which goes on to mention “sexual disinhibition”.
so really it is the ms to blame but you need to work on your real life relationship.
Assuming you don’t want to wreck your marriage i think you need to stop chatting to this guy online now,and “its getting more serious every day” so you know that already.Even if your husband knows but hasn’t kicked off doesn’t mean he is ok with it or doesn’t care!
My wife has got Ms and i can tell you as her husband this whole Ms thing is pretty difficult for us partners to get our heads round too,for me i thought about it 24/7,it totally consumed all my energy but that didn’t mean i could always talk about it with her.I think if i had found her talking to a random bloke online on a daily basis it probably would have tipped me over the edge at that time.