Last reply 6 years ago
Help wanted!

Hi Guys, I am wondering if anyone can help me? I got diagnosed with relapsing remitting MS 6years ago now and feel I haven’t accepted it. I feel like I never have received help with how it effects me emotionally, some days I wish I had never been given the diagnoses of MS as it feels like it plays a part in how I live my every day, today life (ie I shouldnt do that it will make me to tired). Does any one have any advice or feel the same as me?. Thanks xx

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6 years ago

I’m not diagnosed yet…but over the last year I’ve been a rock. Although I had good days, bad days, and worse days I was always able to shrug and keep a smiling face (whether I felt like smiling or not). Its been a horrific year for me but once my last flare up/relapse was over (although I never fully recovered) I was able to nearly resume my life.

Then my second large flare up/relapse happened (a month ago and still continuing) and I’ve emotionally lost it. I can’t seem to weather this one like I did before. Been kind of an emotional mess and feeling quite…stranded.

The best advice I can give you is to reach out to someone you can really talk to…and REALLY talk to them. Get out everything you are feeling and explore how you truly feel about your situation. And (try) to learn to accept your situation. It maybe kind of a sh** situation over all…but there are always good things to focus on.
And knowing…is better then not knowing when it comes to something like this. It may guide your choices/actions (as something like this does) but its far better then having it…but not know what it is.

May not be the most uplifting advice. But just my two cents. Hope you get some good advice that helps! =)

6 years ago

strawberrygirl Having multiple sclerosis is just a label for something that affects your life. Your life isn’t MS…. hope that’s profound enough to get you thinking about something else 🙂

6 years ago

I like that DJ! Very well spoken

6 years ago

Here you go, @strawberrygirl, here’s a list of the possible emotional phases that you may go through:-

1. Shock and Denial
2. Pain and Guilt
3. Anger and Bargaining
4. Depression, reflection, loneliness
5. The upward turn
6. Reconstruction and working through
7. Acceptance and hope

As you’re probably aware, it’s not a straightforward journey as you may revisit certain phases. But, it’s useful to see the journey written down.

Hope this helps

6 years ago

@strawberrygirl That’s awful, MS can leave you feeling so alone (but Shift is here 🙂 You could ask your GP or MS Nurse about counselling, or call the MS Society helpline 0808 800 8000. There’s information on their website about the emotional side of MS and when I read it I thought oh yes, that’s definitely me! Sometimes I have a little cry then swear a lot and have a glass of wine x

6 years ago

I always used to feel like there were things I couldn’t do or shouldn’t do because of my MS. One of the biggest things MS took away from me for the longest time was my confidence. Believe in yourself, you are still able and capable. Letting this get you down doesn’t do you any good. Believe me I know how hard it is to not let it get you down, but that is the difference between living with MS and really not living much at all. This is how I deal with things, it might not be everyone’s point of view, but it is how I look at it now. You still need to take care of your emotional and physical health more than others that don’t have MS, but that only makes your life better anyway. I hope you can find a good place to be in mind, body, and spirit. I hope this helps because I spent way too much time coming up with things I couldn’t or shouldn’t do because of a diagnosis I received many years ago. I don’t know that I have accepted having MS, but I will no longer let MS live my life for me!

6 years ago

@Chels thank you 🙂

6 years ago

I was a total mess before I had help from the specialist team who, after all, have seen every variation of MS and know what they’re talking about. They said some very ‘wise’ things which cut through the feelings of panic. I remember one MS nurse (after I’d been to a relapse clinic, had steroids and was trying to get back to normal). I really thought this was the beginning of the downward spiral and said so. She somehow put the whole thing in perspective, reminded me of how well the neuro thought I was doing overall and talked about ‘hopefully many, many years’ as I was at the moment. That phrase has stayed with me – that was six years ago and so far, she’s been right! Sounds as though your needs have been ignored by the neuro team – that’s not fair or right.

6 years ago

I guess, I will always over think things because of MS. How far will I have to walk, will I get a good parking spot, are people staring at me walk, do I look tired… I cling to my friends that knew me before MS and then again I stay away from them sometimes because I don’t want to seem different. I know its cliche but “you have MS it does not have you”. What I have noticed is that MS will make you a fighter. You see things in a different light and you take less for granted… If you EVER need someone to talk to feel free to msg me xxx

6 years ago

Don’t know where you are, but it must be crappy being your age and having this diagnosis. Having said that, read a few profiles on shift….there ARE ppl even younger…
Right now @stumbler is right, you are going thru the negative emotions. but Alison has some good advice. Check the national website, contact your MS nurse. These resources are there and USE them. Denial is not just a river in eygpt, it is a road to nowhere and here on shift you will find friends advice and see you ain’t alone!

6 years ago

Your GP should be able to refer you to counselling as most surgeries have an in-surgery counsellor. I thought I was coping fine and then realised that my actions were getting completely unlike what I would normally do which started causing problems in other areas of my life. I realised it all stemmed from me thinking I was ok with my diagnosis but actually not really coping with it at all!? (I think I was going through the denial stage without realising it!?). Talk through your issues with someone who can help – that’s the best advice I can give.

6 years ago

Hey, I’m sorry you’re finding it tough at the moment- we’ve all been there! I’m currently recovering from a relapse after 4 years with no symptoms at all and was really shocked by how angry and upset it made me! Been so well for so long had allowed me to pretty much forget about the MS (apart from the lovely avonex jab every week!) so was really frustrated and upset when I relapsed. It is one of the joys of this condition I guess- all the ups and downs- a gift that keeps on giving!! On the plus side though, it really made me appreciate how well I’d been – and where I was determined to get back to- a real kick up the bum in terms of getting fit and strong again! There has been some excellent advice offered already but I heartily agree that getting some support, either from friends, family, your MS team or us lot of reprobates on shift is a great idea. You’re not alone, and it WILL get easier with time. xx

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