I need to connect with others with MS, my mood swings have been bad lately and I know I need to hear from other people to help me feel less alone and weird. I blow up at my sons and wife all the time and it makes me feel like a monster. I am type A, Irish Catholic descent, stubborn, passionate, outgoing and funny and loud and friendly. I am reaching out to a therapist at my MS dr. office in Boston and start PT today. Trying to be better.
The loneliness of MS: I need to connect... - My MSAA Community
The loneliness of MS
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55 Replies
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MS can mess with the moods for sure. I think it’s great you recognize that and are reaching out. We all have room to be better. Wishing you plentiful sunshine and peaceful days.
I’d bet we can all relate in some way. I had a stretch of time, which seemed forever, in which I felt irritable at times. It helped a bit to put myself in “time out,” which a dear friend here recommended. When I realized I was thinking unkind thoughts for no reason and would say negative things to my poor husband, I finally had a talk with him and was open about what was going on. I explained that it wasn’t his fault, but the MS. I told him how he could best help and that I loved him dearly. Being open really helped. I sure didn’t want to alienate the very person I relied on the most and whom I loved.
I’m so glad you are getting some help from a therapist who can give you better ways of handling irritability and anger. Your doctor may also help with medications, if needed.
You may vent here any time.
I wish you the best and it sound like you’re on the right path. Good luck.
G'day (Hello), what is your name, mine is Royce(your ms writer & brother)
thanks everyone
I am John, nice to meet you Royce! I need brothers!
Hello John. Mark here. I have PPMS and have also been going thru mood swings lately and enduring a lot of anxiety. Unlike you, I live alone and don't have anyone to witness my moods, so my frustrations turn inward. Recently I came across a good exercise site called "The MS Gym" and it helps me direct my energy in a positive way inward to improve myself. I am in a wheelchair and dream of using my cane again. I have noticed more stability standing lately and do the exercises for drop foot as well as yoga breathing to calm myself down. I hope your PT today goes well for you! Small physical improvements can make a huge difference in our mental state!!
Thank you 88! Best wishes to you my friend. I am blessed to walk, work, do so many things that I basically pretend I am FINE. But I am not. And the pretending does me no good. I do need help... it is hard to admit that for a guy like me.
• in reply to
Thank you MARK 
88Dodgee• in reply to
This disease took my prior life away and after 3 years of struggling and wondering what the heck was wrong with me, I finally had the cause. Diagnosis in 2017 was an answer, but then the grieving and mourning the loss of who I was began to set in. My two daughters, both n their 20's were seeing their dad deteriorate and struggle. I knew from past experiences how difficult it is to witness someone you love go down hill. It was bad for me, but worse for them in ways. I worked hard to accept the changes in myself and with the help of a local support group for neurological disorders came to see this as an opportunity to show strength to my family to not give up.
There is a prayer I was taught many years ago that helped me through a difficult time, and it helps me now whenever I reflect on it.
God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.
• in reply to88Dodgee
Inspired by you, Mark. Thank you.
88Dodgee• in reply to
You CAN do this bro!
• in reply to88Dodgee
I do know that, Mark! Thank you. I know I am tough, resilient and brazenly optimistic no matter what, I just carry around a lot of 'weight' (anger, inadequacy, sadness) that I am just realizing I need to unload. I am very empathetic so it is overwhelming to hear everyone's stories. I am happy I came here today.
carolek572CommunityAmbassador
It's okay to feel overwhelmed, angry, anxious from time to time. You are doing the right thing in recognizing it and reaching out for help. It's so easy to lash out at the ones that we love dearly, but getting it out is the best thing to do. I understand you all too well because my hubs gets the brunt of my 'explosions' all the time. Please let us know if your efforts make a difference, Hidden Keep Smiling 
So sweet, thanks carole. Dreading PT at 3:45 bc it is a 'thing' I have to 'do'. Work is the thing I do and if I have to do more it is hard.
Keep at it, Hidden know that it's hard. When I have to do something like that, I think of something that makes me laugh (it's usually a song) and I sing it out loud! It makes me laugh but it make everyone else cry!
• in reply tocarolek572
PT was great by the way, next one Thurs 8am
May I suggest 'Go Johnny, Go' as your song choice, Hidden and let me know how it goes, okay?
• in reply tocarolek572
but then Johnny has to B. Goode...nah 
Oh dear
• in reply tocarolek572
it was too easy a joke, i can't help it. You put it on a tee. And I love old music.
You're adorable, Hidden
• in reply tocarolek572
clutching your pearls, I imagine lol
and grabbing the vapors (or something like that)
Have you grieved the person you use to be and the life you thought you would be living?
• in reply tokdali
I am the same guy, our bodies are just a shell for our souls and my soul is still the same, actually even stronger now. Nothing to grieve, just situations to adapt to.
• in reply tokdali
i mean no disrespect if that is a 'thing' I just look at things my way. I am stubborn and kind of jerk, so....
kdali• in reply to
None taken
• in reply tokdali
kdali...I'm still accepting this hand I was dealt 7 years after diagnosis. I came back here, i went to PT yesterday, I just got a message from the psychiatrist i have been waiting for and I am doing my stretches soon. This is week 1 of a new way for me. Need to get to a place where I am more accepting of my MS and not mad at.
I am so thankful for this group. I don’t know anyone that has MS and it’s been very hard to navigate all the feelings, anger, sadness... I could go on and on.
This gets very frustrating at the beginning of MS adventure 😡 We have so many emotions and things rushing thru our head of what we are going to do? If we are the bread winner and expected to take care of everything it really gets crazy and bad emotional thoughts come out unexpectedly. Then we fill bad and ashamed of what was done and said as this is not normal for us. Research and reading and venting here helps all of us. I had to start antidepressants and be open with wife and son what was going on. I got several books about ms that I read and had my family read so they could try and understand what I was going thru🤪. I had to rearrange my life and the things I did as I know this is a progressive disease. Yes I too use the Serenity Prayer daily and it helps remind me who I am. I also learned to pray to our higher power and let him take control because my way was not working. So for me it was a spiritual awakening of living one day, on moment at a time. We can’t change yesterday and tomorrow is not here so make the best of today 👍🙏😉🤗 Ken 🐾🐾
PT was good. I talked their ears off. The therapist said 'you're funny' as I nervously and self deprecatingly talked of my walking issues, etc. She has a tough way about her I need so I am going to keep going to her, next one 8am Thurs. Thank you kdali, kenu, and Tulip for making my day brighter.
i can get easily irritated depending on my fatigue stress level etc like when i am trying to do something and someone is trying to talk to me i cannot focus on two things at once. Sometimes i wonder if it is the ms or the people i am around sometimes that cause my mood to change
I experience the same issue with not being able to multi task....I get so agitated when interrupted when i am deep in analysis for my job, but they are just being normal and MS makes me be like, um one thing at a time people!
Yes, it isn't easy, is it? Maybe we can look on it as work in progress and continue to work on it 🙂
There is no “right way” to have MS.
When I notice my brain and mouth are attacking the people I love, I go into my bedroom, and climb into bed. At the time, I think it’s very big of me to be so kind as to remove myself from their world. Then I usually fall asleep. And then I wake up realizing: I was EXHAUSTED, and I should have been “big enough” to go to bed BEFORE biting their heads off.
THERE IS NO CURE. This is what I try to force myself to remember, when I think that spreading my pain around seems like some kind of solution.
• in reply toHensTooth
When I get really upset, I DO feel like I could go fall asleep to escape my insanity and spare my family....and it feels INSANE to me to go do that when i am mad so I do not. But it i what I actually needed. Wow. You opened my eyes HT!!!! Thanks!!
I went to see my doctor yesterday for a checkup and i told her about feeling embarrassed about my ms and walking probs, peeing frequency, etc and she made me an appointment with a counselor right away in the office. I can’t wait to speak with her and see if she can help. Maybe a counselor for you? The doctor (an ms specialist) had a counselor that she uses frequently for ms patients
So what i meant was maybe if you told your ms doc about your issues then they can give you an idea of a solution
you are so not alone, we have all "walked" a mile in your shoes (funny,huh?)this web site has kept my sanity at times, everyone has listened to me scream out of frustration,laugh it up and shed alot of tears.I think the hardest part for me is giving up my old life that i knew,and starting a new one.I often think about anybody who has a chronic disease,feels like this.there are mean people that will be mean to you just because they are mean,but overall people are full of compassion.it took me a while to get over the angry fits,then I found out I was depressed and now on meds,has helped alot! be honest with your drs. they only want to help you.my neurologist discussed talk therapy with me and told how helpful it was,then added everyone,and i mean everyone can use talk therapy, including himself
I have been on Cymbalta (duloxetine) for like 15 years for OCD. It saved my life (along with EMDR, look it up) in regard to that malady but perhaps it is time for other meds to help my other issues. You are all so great, I send love to each one of you. I cry at every response, I'm a frigging emotional guy.
Hi, jpowers37...I have no words of wisdom for you, I'm sorry.😞 I've been at this 20 years & I'm still trying to figure it all out.😳 Everyone here is wonderful! I think I've learned a thing or two from reading all your responses. Hang in there. Prayers coming your way...🙏💖🌹 We can do this!!!
2littletime, thank you. You do have them, you just aren't appreciating them right now. Just saying what you said is good perspective for me to hear. Thank you, I am sending them back to you my friend.
Hey boss!
I’m new to this, diagnosed May 2019; had developed symptoms summer 2018. (Taking ocrevus)
Don’t really have to many years under my belt, I can say this though about most things; your mindset is either going to be your biggest cheerleader or your biggest enemy... You are strong, your responses above to our ms family prove that.
Acceptance is tough, it really is. We have MS! Butttt MS doesn’t have You (or US).😉
One thing I have done which has helped tremendously is talking. Never be ashamed of saying how you feel. I’m proud of you!
Proud of you for reaching out; that in its self, is one of the hardest things to do!
Be strong boss!
Shed a tear when you need too!
Laugh as much as possible when you can.
You got this!
We got this!
One day at a time.
ha we all have those terrible out bursts for we can get to feeling sorry for what we can't do and it gets really old and others don't understand it ...take care and be passionate with yourself ...i agree talk to some doctors and they can help and of course you can say all of the anger and upsetting bs that is in your head and scream if needed ...we all will listen for we all understand it ...been there and have some really bad days and mood swings ...take care and feel the love and happiness ...laugh cry scream into a pillow ...just try to relax.....take care ..
thank you smiles and two oldcrows, I feel so much support and understanding and it has lifted me up so much.
You are not alone in feeling this way. You have a good plan with reaching out to your doctors. I have mood swings at the drop of a hat. I have found that guided meditation has been helpful. It’s also helpful to find an outlet whether it be some kind of hobby or just reading so you can sort of get lost in the flow of doing something pleasurable. Good luck and God bless.
thanks Tina, being her has lifted me up a lot
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