I feel so low. Really down and have done for a while. The problem is every day things are firing up in my body. Vibrating muscles (all over) aching muscles, aching joints, balance out, vertigo. Twitching left eye. It’s doing my head in! From the moment I get out of bed and put my feet on the floor it starts. All day. Going out walking, mixing with people doesn’t work because no one understands really so I hide how I feel take lyrica and baclofen to ‘survive’, then come home and spend 48 hours physically getting over it. Working out, which I used to live is getting painful. My usual routine that I’ve done for years now leaves me aching badly and weary for 48 hours after. So my question: when you hit a brick wall both physically and mentally how HOW do you cope? I would love to hear from anyone. Judy
Hi Judy sorry to hear your having a bad time of it.I am too i am in a severe relapse that started early november,but i was feeling bad ages before that.I find doing relaxation stuff on youtube helps me cope with things when the get too much.I have had migraine type head pain now for 2 weeks then last night i had ice pick head pain too,and its driving me insane.Todays not quite as bad thank god.Hope you feel better soon (((hugs)) x
I apologise if you have received this message already Jaydee I have had a problem with my internet. I hope you are okay.
Hi Jaydee, you sound like you are going through it. I know about the ice pick it’s absolute agony. I find lyrica can help with those, for me anyway. I wonder if it’s nerve related as my lesion is spinal in my neck so again ‘wondered’ if it was nerve pain throwing pain up into my brain. Honestly the thinking that goes into all of this can drive you insane when in reality there is no rhyme or reason to MS at all. It just does what it does when it wants in my case. Thank you for the YouTube tipJudy
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I don’t know if this will help, but I was at that point last winter. I’d had to quit working completely, was living alone, and it was so difficult just to get dressed every day that I stayed in my pajamas unless I was expecting visitors. I was able to just listen to my body. I spent a lot of time in bed, not always sleeping but just stretching out and reading or watching TV. Once the weather warmed up, I started spending time sitting on my back porch in a rocking chair just watching the field and woods behind my house.
There was a lot of guilt and a lot of grief, but I finally sat myself down and had a long talk. I didn’t cause this. I couldn’t have prevented it. I’ve worked, lived, fought as best as I could all these years. Now it’s time to recognize that my life is different now, and whether I like it or not, I HAVE to change my habits and just do whatever I can to ease the pain and discomfort. I have a disability pension now, and I’ve given myself permission to just play all day. The house is a mess, but I deal with the absolute necessities and then spend the rest of my time doing whatever feels good at the time. That may be curling up with a good book, binge-watching television, napping in the middle of the day, or just sitting and staring into space.
It’s not easy to change your life or give up what you love, but I really think I’ve saved my sanity by changing my priorities. I’ve stopped worrying about what I “should” be doing and just do what I’m able to do without exacerbating my symptoms.
Hi, I think with having covid on top of our everyday lives with MS issues, we all just feel so worn down. The news, the media…they all want to talk about it all the time.we dont have to have it on tv or read newspapers, but we cant escape it.
We are told to stay home, dont see friends and family. Some folk live alone and see no-one for months.
It`s no wonder a lot of us are feeling so low.
There isnt going to be a quick fix for these awful times.
But please hang in there everyone…better days are coming…somewhen!
Boudsx
norasmom what wise words and they have made me stop and think about how I’m handling my life at the moment. Basically trying to live the life I had, trying to keep being the person that I do not think I can be any more. I neither have the energy or mental capacity to be that person and it’s making me dreadfully unhappy. After reading your post I can see that some changes need to be made to my life to find some contentment and need to work out a way out of the pressure I put myself under to live a life that I don’t think I can manage any more. Thank you so much for sharing your experience with me and I wish you much happiness for the future.
Thanks for the reply Judy 01 i too put myself under so much pressure still trying to be the person i was.I think that is what causes me a lot of my problems.I fight all the time to get back to being that person and it just will never happen,so i am going to try and accept myself for the person i am now.Its exhausting trying to be someone your never going to be again.You would think after nearly 30yr of MS i would be better at accepting it but i aren’t as hard as i try.I need to make changes too.x
Understand completely - my MS is always there, lurking in the background & limiting what I can & would like to do but that’s how it is, I take a tablet everyday to help my mood, as the winter is horrible & covid threw in, doesn’t help - I go to the gym & I miss it so much - try to get out for a walk once a day but it’s baltic - I long for the Spring again - may not make you feel better Judy but alot of us MSers totally understand you - chin up as they say & make sure you ask for help.
What a lovely message and I have taken strength from it. I have (not just saying). You’re right, ms is lurking and you never know what move it’s going to make. It’s awful but then I think of all the poor souls who’ve died and those who have lost somebody due to covid and feel bad for being so pathetic. I need to get my act together. Thank you Redman for responding.