How does your MS leave you feeling? - My MSAA Community

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How does your MS leave you feeling?

Allen5280 profile image

It is said that 'a picture is worth a thousand words' so.... I feel alot like this! Frozen in time and place all the while waiting for the end. Knowing whats going to happen and no matter what i do its going to turn out the same. The lesson here is.... Like Wile E Coyote, no matter how bad things go, keep chasing that Roadrunner!!!

54 Replies

For me, I now walk as a zombie would on bad days. On the plus side, I'm getting really good at it!

Allen5280 profile image
Allen5280 in reply to

Ive gotten pretty good at falling down!

in reply to Allen5280

I'm still (barely) standing! I've improved my "intoxicated but not really" shuffle, too! waiting for a burst of energy so I can have a tantrum on the floor of the grocery store.


Allen5280 profile image
Allen5280 in reply to falalalala

Oh how lovley! I sometimes find myself wishing for the energy to tell someone off that has gravly insulted what little dignity i have left. Then i find myself coming up short. Probably best as i would burn bridges so i just swallow what luttle pride i have and brush it off. Unless im really hurting, then i get a little snippy! LoL

falalalala profile image
falalalala in reply to Allen5280


You still have a good sense of humour, so there is still hope 🙏

in reply to jimeka

You NAILED it, my friend. Once humor is gone......................

Allen5280 profile image
Allen5280 in reply to jimeka

Yeah, sometimes it eludes me, however i try and find the humor in it all. There are times where I have to get through those times before I can look back and find the humor.

in reply to Allen5280

I know it's hard to find humor sometimes. You are not alone...

Allen5280 profile image
Allen5280 in reply to

Well for alot of people knowing there is someone else going rhrough the same, brings them comfort. So they dont feel alone in that. I am not one of those people. I am of the few who knowing others suffer as i do, brings me great saddness. I am alone, dont mean to be difficult but its who i am. Its why i have to syep back from the forum for a little while from time to time. It brings me great emotional turmoil that i cant fix everyone elses pain. I become overwhelmed at times by the suffering.

in reply to Allen5280

I never thought you difficult. You ARE honest. And, you are correct

mrsmike9 profile image
mrsmike9 in reply to Allen5280

You don't have to fix everyone! We are learning to be strong through this. This is a good lesson! This group has bonded as a chosen family. Yes, it's something difficult that brings us together but if it wasn't MS, we'd have some other trial. There are worse things!

Allen5280 profile image
Allen5280 in reply to mrsmike9

Its just my nature and it cant be changed, just the way I am.

mrsmike9 profile image
mrsmike9 in reply to Allen5280

That is incorrect. I was a "fixer" myself. My whole life I "needed" to be the one to offer help, to bring people the most of me. Through counseling I have broken away from that. When I couldn't help someone to "fix" their issues, then I felt like a failure. Now I can be there without "fixing".

Allen5280 profile image
Allen5280 in reply to mrsmike9

You are not me, and i am not you.

mrsmike9 profile image
mrsmike9 in reply to Allen5280

True. Just trying to help...

Allen5280 profile image
Allen5280 in reply to mrsmike9

I understand that, see your still a fixer!!!

mrsmike9 profile image
mrsmike9 in reply to Allen5280

No, I was just trying to be there for you. It seems you took offense. Sorry.

Allen5280 profile image
Allen5280 in reply to mrsmike9

No not offended, just making an observation

Allen5280 It’s called being an empath. It means you have the ability to take on the emotional and/or mental struggles of others. It can be exhausting❤️

It is exausting. I knew it was empathy but sometimes its better to spell stuff out for a better understanding by those whom do not share in it. Very few can understand putting the needs of all others above their own. Its sometimes truly haeartbreaking being an empath. Any joy found by them is momentary and fleeting and this world is such a cruel place for an empath.

carolek572 profile image

Chasing that roadrunner is half the fun, Allen5280 Thank you for reminding me! :-D

Allen5280 profile image
Allen5280 in reply to carolek572

Then the giant metor falls from space on my head just as i was about to catch up with it!!! All fun and games untill...... it ain't no more!!! 😂🤣😂😃😂

carolek572 profile image
carolek572CommunityAmbassador in reply to Allen5280

You talk like you’re my mom, Allen5280 😂😂😂

Good one👍. Nice to hear from you 🙏 Was thinking about you over Christmas 🎄 🤔. Stay positive and strong this crappy year is almost over. Prayers are with you 🙏🙏Ken 🐾🐾

Allen5280 profile image
Allen5280 in reply to Kenu

Yeah just New years to get through, im doing a little better, still working on acceptance of the new normal. Even after 6 years post diagnosis. However, this year I've already accepted 2021. As the saying goes, If someone spends New Years alone, they qill spend the whole year alone. I already know i will spend New Years alone so.... thats not going to change for '21. So that will be a positive start in this circumstance.

Your like me - up and down like tarts knickers -but still with a sense of humour and pride Allen5280

There’s only two certainties in life - death n taxes!

- [ ] We are all going to die at some point

- [ ] I’ve just had two weeks in hospital with a broken coccyx, low blood pressure and gastroparisis

- [ ] I suppose I’d given up with the constant struggle ...but hey I’m not a quitter, and nor are you?

- [ ] You’ve survived 100% of your bad days so far

- [ ] Yes things could be better but hell, they could be a lot lot worse

- [ ] I met a lovely man in the hospital – he was in with a brain bleed but by Tuesday it was a brain tumour and then they found a tumour on his lung ... Gutted for him and his family – And what could have been:..

- [ ] Never never never give up is my motto and I am going to go down fighting - but still with a sense of humour and pride...


jimeka profile image
jimeka in reply to Mermaidia11

How on earth did you break your coccyx? Did you have a bad fall? Did you know about the low blood pressure or was that discovered after the coccyx? I hope that you soon recover. I had to buy one of those cushions for a broken coccyx, the one with the piece missing, because I developed a bed sore on my coccyx, that was painful enough, so I can only imagine yours. Keep smiling my friend, 2021 has to get better. 🤗

Amore55 profile image
Amore55 in reply to Mermaidia11

Oh, my dear friend! I wish we were closer. I would bring you grapes in the hospital and then eat the, all myself! 😆Seriously, I am crushed that you spent so long in hospital. Improving? I think of you so often, but like all good crappy friends never write! Good intentions and all that...

Please stay well, get better. Love, Kelly xxx

I hate to hear of your troubles, what is a coccyx?

ha yes we all will at one time in our lives it is the end but ha we have along time to go ..don't think it is over yet have a long journey ahead of us and much happiness....

Thats not necessarily the case for us all.

i know it isn't but we do have to keep fighting unless you don't think it is worth it ...i am not without problems i just fight to keep going to watch my children and grand children grow up to be successful in what ever they have planned for their futures...

I xan no longer plan for tomorrow. It takes everything to get through the moment i am in. I thought it was clear by "keep chasing the roadrunner" to not give up? I have no spouse, no children or grandchildren. Each of our circumstance is unique and can not (logically) be a comparison. As far as happiness? Whats that? Just my soace and my place, i use this forum to get some of my stuff out so i dont implode (emotionally), have a mental breakdown and end up in a ward. Not teying ro be fixed for that is not possible unless God decides otherwise. He has me in this space for reasons unknown to me. I am just trying to open back up, not to be told my feelings are wrong.

i thought you had been getting better at walking just a short time ago it because of the cold and icy that you are not out anymore ...sorry if i am upsetting you don't do on purpose just want to try and help if i am able to are loved on here for we are all in this situation of dealing with the crap of this MS...take care ...

Im not upset. I was doing more. I was off my crutches for a couple weeks. Then MS had its say once again. No its not snow or icy or even that cold. Im in pain, great pain. Physically and emotionally, great sadness, isolation and despair. Im too young for all this crap. It just sucks, plain and simple. Im trying ro make the most of my agony. If life hands you lemons, make lemonade. If life hands you cacti🌵 well then, just sucks to be you!(me) this is where i come to vent, no one can really help me. If i vent this stuff to people that actually come around some, well then they sont xome around anymore. If i vent it to family, well then i dont hear much feom them anymore. So i try to let out my pain and frustration so i dont end up in a mental instution. One of my ways of coping

yes this is where we all can vent and people understand from where you are coming from but again we all worry about each other very much...yes it is so maddening where your Ms makes us back slide for a while when we had accomplished so much ..i do know the fealing for that is why i have changed meds several times for i didn't like the out look for the future and was hoping for a better out come hoping get it ...we all have upsets ...sorry for caring how you are doing ...think of me as an itch that needs to be squished or scratted ...sorry for being a big bug and much needed happiness...take care ...

I aplore the term backslide. Like Nails on a chalk board. Its not one i would use here either. I didnt slide anywhere i CRASHED and BURNED at my attempt to get back on my feet. Again, and again, and again. The pain and suffering it takes me to achieve those goals only to find once again, MS will win, every time.

i am sorry for using the wrong words ...PAIN is terrible reminder of MS and it's damage ...take care and hopefully they can get your pain under ya take care...

Its not toye fault, ther is no way you could have known. As the Grandson of a former District superintendent, the nephew of a police chaplin pn one side. The Grandson of former Evangelists, and son of a Minister, its a term of Judgment used by those whom are to Not Judge, least ye be Judged, condem not least ye be condemed and I feel very deeply it is a term of hypocrisy. Just is.

have a strong force behind you your founding fathers and know the strength that is there for you to depend on ...

And that's the problem for me trying to chase the Roadrunner. My legs are crazy. Just getting into bed makes me tired. I will have to chase the Roadrunner with my scooter. 👍🏾🛵

Im not able to chase anything, i would have to rent one! LOL

oh my,you can feel the anticipation:)

Allen5280 profile image
Allen5280 in reply to pamgarner

Every moment of every day!

Sorry...yes I suppose I was just empathising with you rather than throwing a pity party...!( which I feel like v often!) no visitors allowed either, so that was fun...

Coxxycs is your tailbone on the base of your spine,sorta between your bum cheeks

I got a shake on and twerked into the wall on the stairs! Broke coccyx and spirit, so mate called an ambulance

To be honest hosp was the best place for me !

lots of interesting people and 3 3 course meals a day in bed

Yes both blood pressure and temp discovered to be low but heartbeat fast ?

It was great respite and I came out better for it

(I’m underweight as food becoming a bit of an issue!)

The wound on my tailbone hasn’t become a pressure sore so all good ( well almost- going to the loo adds an extra dimension of pain....!)

Thanks everyone

Hope u are feelin a bit brighter for reaching out @Allen5280

Mermaidia11, you dont need to be sorry. My post is asking how MS has you feeling. Oh, how a broken coccyx woyld make me miserable!!! I am feeling alot brighter. Ive just gone through somethjmg i have avoided since starting this madness... pharma med withdraw. Specifically my Cymbalta. I didnt even lnow it was so addictive, shakes, chills, nausea, diarrhea. My vertago was out of control. If i so much as turned my head, ever so slightly my world would spin and the ringing in my ears would be so incredibly loud and change pitch momentarily. Ive gotten to where i didnt think about that little blue and white pill. I was on the generic Duloxetine. My pain has increased again but i wont be going back on it. I dont want to have to go through this all over. At first i thought i caught rhe covid.😱


well im going 2 keep chasing the road runner i refuse to lay down and accept anything this is why Wile E Coyote keeps chasing the road runner

my mother told me when I was younger that this cartoon was symbolic of life you have those who give up and accept fate and then you have those who keep going to see if they can beat fate when they hit a road block.

i'm an example of the person whose hit several road blocks and i've climbed over them each time to reach a goal. I will not let ms be my down fall or anything else for that matter.

its about your frame of mind and determination. it may have something to do with your upbringing as well. i was told to never quite reach for the top. if you find yourself stuck stop evaluate the situation and try again

Allen5280 profile image
Allen5280 in reply to rjoneslaw

The only constant in my life any longer is failure. Then getting back up brushing myself and going at it again. Hence the veep chasing the roadrunner. Im flieting with insanity however. Keep doing the same fight over expecting, hoping for a different outcome is driving me mad.

I can so empathiseI feel the same

Groundhog Day in hell and the drugs don’t work

I was married; but the passive agressive fcuk gave me no option but to throw him out

I could go on...

But it’s one of them, we have to accept what we can’t change and congratulate ourselves when we get through a day fed and clean and watered...

And lower our expectations...

Keeping snails is my glimmer of happiness

Go figure

Hugs to all


Like Groundhog Day and Shawshank Redemption had a baby.

get up and shake the dirt off we all have our burdens in life yea m.s. sucks we all know that here for sure from one degree to the others me I got it made compared to some here and not as good as others also hang in there bro theres still good days thrown in just to confuse us I hope you have a great new year

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