Really Struggling Emotionally

Hello everyone!!!

I’ve been living with primary progressive ms for about 10 years. My life has really turned upside down since I was diagnosed. I’m struggling emotionally and want to be in a better place for everyone around me, especially my wonderful 18 month old daughter. I’m not on any medication and have spoken to nobody.

Has anyone got any advice for making the most of a new life?

Hello there!
PPMS is often thought of as the forgotten type of MS.

I’ve had it 24 years and it took 22 to get a proper diagnosis.

It progressed really quickly and I saw 17 neuros before finding one who was interested enough to try harder than anyone else, to get to the bottom of it!

So, back to you chuck…how are your symptoms? Do you have a lot of pain? I find amitriptyline keeps most of my pain at bay and it helps me sleep.

Are you able to work? Having such a young child ought to be a wonderful time, but having PPMS will make that difficult for you, I know.

Why not ring either your GP or MS nurse to discuss your feelings? Maybe they can suggest something to help.

We are all going through a dark period just now and it doesnt help things. I have covid but it isnt as bad as many have suffered, thankfully.

Sending love


Just a few questions for you JamesVC if that’s ok?

You have said that you have been diagnosed for 10 years and you are struggling emotionally. Have you struggled for all of the 10 years? Has something happened in those ten years to make it harder now? Has there been any time in that ten years where it has been easier?

Guess I’m trying to figure out if the birth of your daughter and the obvious highs and lows of being a new father and having a little life in your hands has affected your emotionally and the way you are looking at yourself or the way you deal with things? Being a new parent is difficult enough without any other pressures adding to it.


Thanks for the replies.

I’ll give my gp a call tomorrow to see if he can help. Luckily I do an office job from home. I wouldn’t be able to do anything else. Also luckily I have no pain yet, just disability and tiredness.

I’ve felt a bit lost since diagnosis. The birth of my daughter was a real plus. She is reason enough to keep going but it would be nice to be happier. I think talking about my illness would be good and maybe a new hobby.

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Hi James

Here’s a few tips. Every day, make a list of things you’re thankful for. It’s well established that thankfulness is good for our wellbeing.
Also, engage with nature. There are so many ways you can do this: Go to a park; notice the trees and hedges and ‘weeds’ and birds when you go down the street; sit by the window and gaze at the clouds (especially at sunset); search for ‘slow tv’ on youtube - there are tons of videos which are just sights and sounds of beautiful nature; have recordings of birdsong playing quietly in the background as you go about your day (Birdsong Radio is a good one to try).

Another helpful thing to do at the end of every day or week, is to look back over your day and notice what things you did that energised you, or where you felt you were really being you, or that nourished you etc. Then notice what things did the opposite - that drained you (not just physically but emotionally), where you didn’t feel like you were being yourself, that left you feeling empty etc.
You’ll soon start to see repeated things coming up. You can then use that to make better decisions.

As an example, I found that an evening sat in front of the telly left me feeling empty. But reading my bible and worshiping God would energise me. So if I had a free evening, I’d be much better off doing that than just watching telly.


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