Hi all,
Still no concrete answers or diagnosis, although I’m hopeful that will change soon. I’m really struggling with my symptoms, and the grief that keeps coming from more changes to them. Today I noticed a spot on my right calf that feels eerily similar to how my left calf was when it began having issues.
I don’t know what to do with all of my grief. I don’t know how to hold all of this alone and talking about it to the ones I love also sucks because I can see them hurting. The more I lose, the less I want to keep showing up to my life. Will this ever get easier? Does the grief of losing abilities ever get easier to live with?
If anyone has any advice to share, I’m happy to hear it. Right now I feel like three toddlers in a trench coat trying to be an adult. I hope you all are having a good day today.
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Hi, sorry I don’t have any great advice but wanted to say. Try to focus on the positives, they’ll be there somewhere 
Take each day at a time and look for the good in everyday.
Take care and sending love x
Hi there, I also have no good solid advice re: if things get easier/how to manage losing abilities, so will let much more experienced and knowledgeable folk weigh in.
I just wanted to quickly comment that I’ve seen a few of your posts on the forums already (the ‘curing Vs healing’ analogy really stuck with me) and have been so bolstered by how well you express the frustrations of having strange and unfair health things disrupt life. I imagine your honest and helpful posts have done a lot for others lurking, too. A big thank you for adding so much insight and sharing your experiences.
It’s so unfair that you’re having to put up with all this, and frustrating to still have no concrete diagnosis. I really feel for you and hope you do some nice things for yourself this week - I’ve got very into doing the Wordle every day, and when I’m feeling low, also turn to easygoing comedy/quiz shows or podcasts to shut my brain up a bit.
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For me there have been spells of such loss and fear that I haven’t known what to do with myself. And there’ll be plenty of others to come because that’s the way a chronic progressive neurological disorder works. I’ve been lucky in recent years because meds are on top of my very active RRMS. But it won’t stay RRMS for ever and there’s a whole new world of pain ahead. But there’s no use dwelling on that. ‘Sufficient unto the day…’ as my mother used to say.
Against that background one makes as good a life as one can. When friends wonder how I cope, I always say I’m only coping until I have a better idea.
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I know it’s a difficult road to be on with all the uncertainty, but we have to try and make the most of what we’ve got! Tbh my life has been like a rollercoaster, I was diagnosed in December 2023 but I continue to have battles/ hurdles in the way. I have days when I want to hide away, then others I feel I can take on the world! We have to make the most of the good days, and it’ll help you to keep fighting for answers! Try to remain positive and I really hope you get answers very soon.
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Sending a big hug 
If you are able to, try and keep yourself distracted, I find that helps me ignore symptoms.
And although it might be tiring - fight.
I personally knew something was wrong with me, and eventually ended up changing GP because the one before basically brushed things off. My new GP took things seriously and here we are. Call and contact whoever you need to, and don’t feel like a burden - it is your body.
I think you will eventually come to terms with things - I am nearly 3 months post-diagnosis, and sometimes I forget about the symptoms and the MS, but then it will suddenly hit me like a ton of bricks. Like you have said, the grief does come back every now and then; when you wonder why your body is doing those things and grieve the life you maybe had before.
But talk to people, reach out whenever you need to 
This forum is great and is full of lovely people, and I’ve also found a couple of groups on Facebook too.
Take care x
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