This is about a subject that I normally avoid like the plague, or in this day and age, covid-19. The emotional toll that MS has on our outlook, happiness and wellbeing.
I HATE this stupid affliction. I'm so tired of the same old crap day in and day out. The rollercoaster of emotion and not knowing what wont work today is really getting to me. Just a couple months short of 6 years post DX and 10 years of symptoms. I'm still no closer to any stability, if anything I'm so much farther away. I'm loosing this battle physically and emotionally. I'm so tired of the misery, suffering a loneliness and pain. I've reached a point where it's a constraint battle in my mind. Fighting off the thoughts of bringing this to an end. To close out the misery knowing that no matter what I do, I will fail, I will falter, I will fall. It's been going on not for days or months but years and years. Each and every morning I open my eyes to ... oh hell, I have to do it again. I have moments where it seems like it's going to change and get better only to be burned to ash of a dream back to a nightmare. What has become a constant struggle for life has found it's way to the forefront of thought, all day, every day. I want to be ok, I wish I were, then again I wish for many things that don't happen.
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Allen5280
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I've been there, done that, got the tshirt and it dose not help. Looking in the mirror and lying to myself helps nothing. Some of us are just broken, MS has kicked my but and I'm tired.
It’s frustrating when you have so much to be thankful and hopeful for, that you just cannot get out of your ‘funk’. I too, am in that mindset sometimes, and nothing that I can do can get myself out of it. No one understands, not really. But it helps when I can talk about it. My husband, my daughter, are always there to listen to me, and it does help to get it off my mind. What I am saying is, vent, write things down, just get it out of your mind so that you can focus on something else. Something better, Allen5280
Hey🍔in🌴 I know, and it's hard, and it just never stops. Look for that 1thing that can make you kinda smile today Allen5280 . Just a small one. Then tomorrow, maybe a real 1. I know it's hard 🍔. 🤗💕🌠
i am so sorry you are feeling this bad ...make a call to your doctor and let them know how you are feeling ...tell them you need a way of getting out and doing things ...that would help you so much to see others and to talk to them ...take care and please make the call ...be safe and yes it is a big burden everyday but there is more to life just need some help to go out and to see it ....love and happiness....
i am so sorry ...wow i thought you had really liked moving out there is it for that there are still no one out there to visit with ...play the guitar and oh i thought there was someone that would come out everyday for your help ,do they need to send someone else out that can relate with you ...someone with the same enjoyments ...say like a male if it is now a female ??...sure hope there is more to you and your life that all of what you have said in the past...good luck to find someone or something of interest for you....
another thing i remember didn't you want to be out there with out anybody else that you liked peace and quite and be able to be noisy at any hour what has happened to that ...it isn't as nice as what you thought it would be like ...i know people can be very noisy or bothersome but again it is nice to watch others having fun or laughing at them for dumb stuff that they are trying to do for any kind of a dumb idea but again that is there world and you have your own special world ...there has to be more to it than what you say it is ...you use to be more cheerful what has happened that has changed that ...i know you have ms so has everyone else ...we just do what we can and just yell or cry at times but not stop enjoying our life no matter what it is ...i am so sorry that you feel you are any different in your life than the rest of us ...living on ss and not going any where ...wow so exciting but in my past of many years before this monster took over my bod i use to go drinking parties worked at the time it was the pits to get up everyday to go but now wish i could once in awhile but ha it is what it is ...you do really need to get a real life and enjoy it ...look around outside you should have a great place of some kind of life around you to see around you for you are in a park right ...i wish i could go camping and enjoy the outdoors ...i am 67 have had this for as long as i can remember and was told what i had back in 2004 but had before and i just thought i was just clumsy ...fall down twist and ankle or something else but just got back up with loads of pain and we just go on ...had to quit smoking for the cost got to be to much and the old man didn't like to pay for it and he quit so i had to and guess what i got fat and now he doesn't like it and it is his fault but he doesn't look at it like that ...he is a big man but that is okay but i was never to get fat like his sister but ha life is still okay ya i hate the fat too but that isn't the end of life ...get a grip...sorry about that but ha we all have something in life that we don't like ....take care ...
don't take it that way ...we all have problems and we fight for what we want and it sounds like you have given up ...can't believe you can give up so easy and when you said you loved moving out to the park i thought things was getting on a better side of this stuff that you were going thru i am so sorry you felt i was comparing my life to yours we all live a different life as to what we want...so sorry i had made you feel i was judging i was just hoping to help you that you are a worthy person and need to be here in this world that at times can have lots of road blocks that get in our way with living with a disease that is getting in the way a lot of times but to keep working around them ....
I agree with others, make a call to your doctor to let them know how you are feeling. They may be able to refer you to someone to talk to, maybe a prescription to help with the feelings. I have been taking some sort of antidepressant since I was in my 20s and I am now 41. When things get really bad, I make an appt with someone to talk to so I can get the feelings off my chest as the meds sometimes can't do it all by themselves. Please talk to someone. Cyber hugs your way!
I don’t think you’ll like my post. I used to get so angry when people thought they knew what I was feeling. They didn’t. Because I was in my own private hell. Nobody can know what that’s like because it’s suffering that’s uniquely your own. But I figure, you’ve been through worse than some bad blog advice! You can handle it. Here goes.
I think in a certain sense, trying to be happy, waiting for a cure, or hoping for improvement are all pathways to depression.
You write, “I'm so tired of the same old crap day in and day out.” Me too. Change that today... Change something today and make today different than all the yesterdays. Climb off the carousel. Refuse the rollercoaster. Stop the round and round and up and down by leaving the amusement park altogether. No - I don’t mean suicide. I mean, stop trying to be happy. Stop expecting to have fun.
You write, “I'm loosing this battle physically and emotionally... I've reached a point where it's a constraint battle in my mind. Fighting off the thoughts... ...no matter what I do, I will fail, I will falter, I will fall.” Yes. Yes you will. It never helped me to “keep up hope.” Hope stinks. Hope disappoints spectacularly. ...You WILL FALL. Don’t let anyone fool you. Most likely, if you’re disabled today, you will wake up disabled tomorrow. So now what? Let’s stop being so surprised. Let’s move on.
What I find interesting in your post is words like “battle” and “struggle” and “fighting” and “dream” and “fail”. They all imply resisting an enemy. That’s got to be exhausting and frustrating and depressing. Clinging to the person we used to be, wishing for the physical skills that used to feel easy, dreaming of tomorrow when we’ll gain more strength... Ya. Let me know how that’s working for ya.
If it’s not. If you hate it. If you’re done with it all. Then go ahead and let it go.
Don’t let go of human existence. Not that. Instead, let go of wishing that this existence was any better than what it is. Let go of constantly judging your life as some kind of crappy rip-off.
It is what it is. ...What if you truly, deep down, believed that? Wouldn’t that be a load off? What if you stopped thinking it “should be” anything other than exactly what it is? Would you kill yourself? Or would you feel suddenly relieved of a giant burden?
I hate the baggage that comes with the word “acceptance”. Because even “acceptance” implies knowing what WAS, comparing that to what IS, and somehow being okay with that. Screw “acceptance”! I accept only the present moment, and I don’t compare it to anything else.
What I’m suggesting is: Forget what WAS. Forget what WILL BE. THIS IS IT.
Try focusing entirely, completely, and only, on what IS. Just BE. And whatever that entails. And that’s just what happens. And then it’s really not that bad.
And if it IS bad, then okay. It is. But it’s still better than when you were comparing to what it was, or what it should be, or what it could be.
You write, “I want to be ok, I wish I were, then again I wish for many things that don't happen.” I think that therein lies the problem.
I am one of the ❤️ Likes on this reply! LOL That’s okay Allen5280 . At least you’ve got plenty of people on here (including me) who care about you, and think highly enough of you to write out their messages of hope. I’m sorry mine didn’t help.
If I were to abandon all hope and or dreams, there would be NO reason not to open my knife and then my throat. Your suggestion for me would be a death sentence. I did not mean it to be rude. We are each in a different space in our lives and our affliction. Some of us have good support systems and care, I do not. What works for some will not necessarily work for others. I didnt want to be so callous, I'm hurting, in suffering and in pain. Emotionally devastated and broken, unwanted, unneeded and unloved. I appreciate the kind messages from everyone. I know there is a level of caring for others with our affliction, it does not change things for me. I AM ALL ALONE. I wake up alone. I suffer throughout my days alone. I eat meals alone. I watch TV alone. I lay down at night ALONE. I know all the stuff about MS loneliness, however physical loneliness is another animal. I have no love, I have no life at all. I talk to ants and spiders. I havent felt the loving touch of another person in so many years. Not sex necessarily, just the brush of a hand or a hug or the loving look in the eyes of another. This is NOT LIFE this is HELL.
Allen5280. You and I have private messaged about this MANY times and you know how I feel about it. Screw the whole “ I have MS, but MS does not have me” stuff. Of course it does! It has everyone of us. Some may not realize it yet, but they will. So I will pm you happily again, because a) you are my dear friend and b) because I love you so dearly. We will chat and not look for some massive way to change the world, but to be there for each other, because that is what friends do. Look for my message soon, probably tomorrow. In the meantime, all I can say is I get it, you know I do. We are on the same page. I love you bunches! Kelly xxx
Ah Mate I feel the same - and feel your pain big time
Feel useless and every day an uphill battle - not going out is the least of the woes eh?!
It’s mentally, emotionally and physically exhausting- some days all I have the energy for is climbing back into bed
I’ve been at it a long time, and the bad days very much outnumber the good these days
I went to the neurologist last year with a steep decline and what I thought could be stroke symptoms, or msa .. she sent me to a movement disorder specialist who arranged an mri; turns out I did have a ‘silent stroke; I got told in a three line letter
Since, I have been getting worse at a rate of knots and realised vascular issues are common in the later stages of ms(..so much for living like a nun, lots of exercise and good nutrition...)
It’s taken me a lot of effort to even type this; physically mentally...fcukin tremors (and apols for being v quiet of late everyone...)
All I comfort myself with is; I have survived 100% of my bad days so far, a good cup of Yorkshire tea ; (outside) and breeding a snail
I know right
. (i could list alo of the things i used to be… But that helps no one…)
.
it’s not an acceptable or adaptabile illness in the later stages; and the not feeling understood or cared about (no matter what the reality is)
- because the depression is uncontrollable, (even with happy clappy podcasts, pills, meditation, mindfulness and er madness)
Exercise is exhausting, showering, talking; thinking etc...is too
Mate - go and procure a lettuce, catch two snails and a get it all out to them
Watching them to a soothing tune, alone, well it’s mindful meditation in action. (Naming them is important too )
Trust me, you won’t be able to release them back; Because they genuinely do seem to react to both you and music.cheap, free little Freud’s (well actually I prefer Jung) and watching their carry on is a reason to get up...
So there you have it...
“I felt like shit and forgot what a warrior I was” ...and some bird from liverpool suggested I 💕watch/catch snails.....
I can hear you, just know that
(Fcukin crank lol @Allen5280 is shouting in...er wherever you are)
In all seriousness , LDN, CQ10,lions mane and mancura puriens have all helped me with the mood and mind...
Thank you dearly Mermaidia11 , the reality of things, you UNDERSTAND! Not only that, but you didnt sugarcoat anything or just throw a happy pill at me and tell me in to cute to be sad so get over myself. This shit is real and it is hard. Thank you thank you thank you
i do "GET"it.I also can't see any hope at times,but I do get up ,thank God for waking me up,he doesn't have to.All the emotions and negative thoughts are not exclusive to ms.what about anyone with any chronic disease?we all have our burdens to bear,and sometimes,it is just too much!Loneliness is a terrible burden,but we have to open ourselves up to be open to new experiences,ms. is not going away anytime soon.personally it is all I can do is take a couple of steps at times,we ALL, I am sure have shed many of tears.what I have found I need to take care of my attitude.Attitude will make or break a business,job,family,marriage,your soul. The quickest way to get out of my funk is to do something nice for someone else.This"corona virus"is also screwing with me mentally,so very isolating,I agree,at times we all need talk therapy,more than once,it is up to us to recognize it.It is easy to tell someone else their feelings are not valid if they don't agree with yours,the one thing I have learned from this website,we all have very valid thoughts and emotions.we all would like to be the "one" who can make you feel better,but we can't.Just know we all care
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