I wanted to share something I posted briefly yesterday. Yes, I do that from time to time, post something, think about it and I don't necessarily like my own tone. I was having a horrible day yesterday, im so relieved it's past. So here goes;
Yesterday I woke feeling more cramped and spastic that a usual morning. The weather here in southern Oklahoma has been quite pleasant the past few days. Today it's another beautiful 80° day! Everyone is out walking and just being outside enjoying the beautiful weather. As I sat sipping my morning coffee, I was watching others outside walking around, mostly all couples and families. As I was already in a significant battle with trying to work my way out of my morning, which are usually my worst time of day. Due to sleeping and not moving around much, I wake in spastic knots and charlie horse's (muscle cramps). So it's a normal 2 to 3 hours before I can get to doing much of anything. I started down a rabbit hole of self pity. Fueled with the fire of a spastic morning, degrading balance and mood swings. Oh the mood swings, from laughter directly into uncontroable sobbing. I started doing some online research of Lonliness for I can be by myself, or in a crowd of others and still feel lonely. I have thoughts to often how my loneliness is killing me. Turns out, I may not have just been imagining it is. I came across an article about how loneliness can and does effect out health, and not just for single people either. It was an epiphany for me, a wake up call that these feelings can be detrimental to our health. I am posting a link to the article so others, if they wish to, can see what I am getting at. There have been times I push myself into isolation for weeks on end and it's not a healthy action at all. I know for me it's a battle I face each and every day, this forum is a larger aspect in keeping myself positive in more ways than I had even realized. Anyone who would like to share some thoughts, or open a discussion I am all eyes! 😁
I read another article today on the same subject. I dunno i do spend a lot of time alone and at home. But i facetime with my dad and my niece. I come on here each day and interact. I go to church on sundays.
Anything more than that seems like too much work. This week my fiancé is home and he has all these things planned for us to do and just thinking abot how many showers i will have to take is exhausting let alone the activities. I think i rather like isolation?
I agree on one hand but being in isolation myself, starving for affection one moment and at another I can't even 1st and the thought of a touch. It's definatly a double edge sword. That and throw in the feelings of how could I even consider the heartbreaking possibility of having to deal with the pitiful looks when I'm in a bad way on my worst days. My mother and step dad came to visit a couple weeks ago. She and I got into a conversation about my solitude. I sold my house and land in the spring of 2016. I bought a 5thwheel travel trailer and I reside in a Mobil village. It's smaller and easier for me to manage and the few steps help me to stay active. That and there is only one small area of the living room where if I loose my balance there isn't something to hold on to to catch myself before I fall. That and out the door which I did once last year. Oh boy did that hurt! 😂 wrll the conversation was that I have been gaining ground now that I'm on Ocrevus and if I get myself back to somewhere where I might be able to think of dating again. If I met someone, i wouldn't sell my travel trailer. I need my solitude at times. When I am in pain, unbearable pain, I couldn't stand watching someone watch what's happening. Been there and done that with the onset of MS with my Mom. She I was at my worst and others came to help me. Even my home health nurses, the looks, oh I know they didn't do it intentionally. People with a heart can't help it. They feel so helpless, especially when they care. So I think of it ever were to happen my plan would to keep it for my retreat when necessary. I guess in a way with the improvements in seeing that maybe, just maybe, I can get back to some of life. Without hope where would I be. I am fighting, as we all are. Woyld it be challenging for me to try and push myself to date. Oh yeah, it would. It would take an Angel (at heart) on earth to take on this lost and broken stray pup. I know I'm still single because I was always looking for a heart of gold. I was always looking in all the wrong places, all the wrong ways. Now, it's like a needle in a haystack so to speak. I'm not ever going to give up, I'm not going to ever give in. MS may have it's say, it may have it's way, I won't let it break me. I won't quit, I wont give in, I won't surrender to it. That's just me.
Ya know i think there are dating websites for disabled people. So that way u start off on some common ground. Ya know what i mean? And if u meet someone that is more understanding of what u go thru u wont get the pity look but instead have someone to help give u strength.
My fiancé rolls his eyes and acts like i am being a drama queen when i am in pain so the only issue i have there is how hard i kick him for being an ass.
I certainly understand that it takes a while to get going in the mornings. I often feel like preschool is judging me when I drop my kid off at 9 instead of 8 like most parents. I told them he gets up in plenty of time to get there-it’s me that needs my meds to kick in before I can go anywhere.
As for loneliness, what can you do to get out and be around good people? A local community center? Support group? Heck, even go on meetup.com and find something interesting?
I'm not sure of the answers just yet. I think that's part of why I wanted to open the doors on the subject and see what all the thoughts are. I do go to an MS support group here but due to lack of interest I had gone to quarterly meetings and my Ocrevus infusion pushed me out of being able to make the December one here. I am a bit concerned about my next infusion and being able to make the June one. U am hoping and praying it won't keep me from going to the next.
I am so sorry for you 😐 I am married and I still have some loneliness feelings as it seems all we do is doctors and grocery store shopping. We moved a year and a half ago from Pocatello Idaho to Meridian Idaho, 250 miles. I grew up there and knew a lot of people and friends. Here it is starting all over and it’s hard to meet new friends 🤷🏼♂️. We moved up her for better cancer treatment and that has been great, but no friends😐. Of course I am on a tight budget not working, just SSDI for income. There are lots of things to due here, but it all costs money 💴. And then my health to due it🤷🏼♂️. I did meet a couple nice guys when I was having breakfast and they were reading 📖 the AA bible. I introduced myself and they invited to a meeting this Saturday morning at 8:am at the local bowling alley. I might go due that if I can get up and get going that early, I also just had my 30year Birthday and they want to give me a chip🤷🏼♂️ So that might be a good excuse to get out. All these changes in our life really messed me up. Sorry for rattling on, but I do try to stay positive and I pray you do too👍 Hang in there and my prayers are with you 🙏🐾Ken
Allen, thank you for the post. Life can be very lonely whether single or married. Trying to find someone who will sit and listen to you, and it’s not that you want sympathy, it’s a need to be able to explain how you feel and to have others understand. On here we all understand because we experience the pain and whatever this ms throws at us. I know the Lord has someone special for you, but they are not going to just knock on your door. You are going to have to go through some of those doors he keeps opening up for you, and give it a chance. We don’t know what life will hold for us until we try it. Don’t worry what others think of you, you didn’t ask for this illness, none of us did, so stand tall Allen, and start enjoying yourself, open the door and give it a try, many blessings and prayers, Jimeka 🍫 🤗 🙏 🎶
I sometimes wonder if my desire to not do a lot of things puts a strain on my relationship w my man. I mean we sleep in separate bedrooms (even before MS cuz he has PTSD and i got tired if being literally kicked outta bed wen he had war nightmares) and now i cant do a lot of the stuff we used to do cuz of heat and fatigue.
I do not know the answer to your loneliness but I do know that if you make yourself get out there someone will notice and they could just be in awe of your strength and bravery. Sometimes the looks that others give you are not pity or sympathy but empathy and those are different things.
You’ve started a great conversation! So many of us, even those in great marriages or relationships, feel very alone, at least at times. I think that’s true of even healthy people, but much more so in those of us with MS.
There seems to be tendency toward actions and thoughts that add to feelings of isolation and depression for many of us, and we start that downward slide. It’s very hard to fight those inclinations and do things or think things that help us feel better. I wish we had a switch we could turn on when those feelings hit us so we could recognize it and do something to improve things.
I have no answers, but will pray that God sends you some understanding people who can accept your need for alone time, but be ready to spend time with you when you’re up to it. May God comfort and sustain you.
The article that I posted is about how people can be lonely single or married. Life's circumstances can cause the loneliness. My particular set of circumstances are of the intimate relationship loneliness at the current time. Not necessarily just not having a significant other, but also friendships. I do have friends, just no one close enough that I can open up to. I find myself being "ashamed" of what I've become. It's personal issues that I am the problem. I have had a difficult time with them even before MS. Just stuff life throws at us. Now I seem to have sentenced myself to solitary confinement and I'm trying to break free from that. One of the big reasons I wanted to post the article is because the whole deal eoth it is it can be harmful to pur health and well being. In a way, I was trying to stress the importance of the forum being a place for us to be able to interact with others whom we can feel free to open up to. My personal loneliness may not even be dealt with more interaction because of the concrete barrier I have constructed between myself and others. I am trying to tear down that wall. Piece by piece, sometimes with a spoon, bit I'm trying to get my crane and wrecking ball some gas. 😂
I so admire you for your determination to change things and for your openness. Thank you for posting the article and for sharing your struggles. We all have them, some huge, and some smaller, but we tend to hide them, or at least try to. You're not doing that.
I'll pray that God comforts you and helps you as you change.
I have a very good marriage but still feel these feelings. Mostly because he's perfectly healthy. He has to either not do things or do them without me. I don't mind so much, I've always been a self contained person but it's very hard to not be able to do things because of disability. Theres so many things I want to do, my garden, my animals, taking a walk, taking my dogs to the park, that aren't possible right now. I've been unable to drive off/on for the last 3 or so weeks due to dizziness. Health declining just takes things from you, little by little, making your world smaller and smaller. I know I need to work on how I think about things, how I perceive things, but it's very hard. If I can't contribute to my family, what am I? Or rather, who am I?
I saw my cat stretch up from a nap and I thought, everyone still loves you and you sleep all day and get mad when people don't feed you on time. Maybe being physically here is enough. I keep trying to tell myself that. I am enough.
My dad had a stroke which made his left side virtually useless. He'd been a farmer all his life, as well as always holding down another full-time job. I remember him leaning against me and asking me why hadn't God just let him die. He said he was useless. I remember telling him how incredibly important he was to me and the whole family. That even if he never regained his physical abilities that he was the glue that held the family together and who was our refuge with his sage advice. We needed him to simply exist. I really meant that, and now I would give my eye teeth to see him grin at me and tell me he was proud of me.
I would bet you can hardly imagine how much you affect those in your life. I understand better now how my dad felt then, but I also see how much value each human has just as they are. In God's economy, we're priceless.
That’s a very hard thing to understand. I’ve been married for 47 years but since MS came into my life I’ve never felt so alone. This disease creates loneliness I think.
I’ll be praying that you find your answers my friend.
I totally agree with everyone. I'm married but I feel alone at times, like I'm not understood. But I also know that I can't just feel sorry for myself. Just take it day by day and look at the brighter side of everything. I hope you find the answers you seek.
It's difficult having a debilitating disease that seems to take so much from us. But, if we let it, it can give us something as well. What does it give us you ask? It gives us strength that we never knew we had and we wouldn't know we had without MS. If we are natural introverts it forces us to make contact with others either online or in person. Sometimes I have to force myself to get out and about. I do it for my husband and my service dog. Sometimes the loneliness in a crowd is deafening. Just because a person is married or has a significant other doesn't mean they won't be lonely. Sometimes I am even lonelier than when I was single ( I was about 30 yrs old when I got married). Part of the reason for this I think is because we are married we often expect our spouse to fill those lonely places in each of us. The thing we all need to remember is that the feeling of loneliness can only truly be filled by faith in our heavenly father and doing something to help someone else. We can always help someone else, a smile, a kind word, text, quick note, etc can all lift someone elses spirit. My sister just gave me a talking to yesterday to remember to look for the positive every day. It can often feel that there are many days, weeks, months, years that it is much easier said than done. But with the help of our Heavenly Father we can do this! After all we are Supermen and Superwomen! We are strong! We fight this beast called MS everyday and everyday we beat MS just by being here on this earth. Stay strong my friends and remember that you are a Superman or a Superwoman!
Hi Allen5280 ! Thank you for being courageous enough to openly post about your battle with the loneliness scourge. I think that everyone has their own version of that battle whether married or single, health challenged or not. The linked article is really good too.
Since I left the working world in June of 2016, loneliness has become much more a constant companion. I live solo, (prefer that word to single), and a lot of times when fatigue is smacking me around and my vision is wonky, its best that way. I'm a classic introvert and need my down time without others around but I also need that regular interaction I'm not getting as much of these days.
I'm blessed by having several close friends although most don't live nearby. Since I can still drive, I try to meetup with one or two each week. I'm also grateful for technology like the internet and texting and FaceTime so I can keep in contact with people far away. I also am getting to know some people through the meditation group I've been participating in and forum's like this. I've been dating a little bit recently but this is a huge change for me as in not dating for too many years to count. Its long distance with someone I have history with. I've avoided dating for years because I hate being pitied and I hate having to explain my invisible limitations over and over. I also didn't feel up to investing the energy. Each of these things I'm doing helps with the loneliness a bit but its still overwhelming at times.
Try to take some baby steps towards more interaction. Each time you do, the next step will be easier. Just acknowledging it was a huge step! And like others here have said, at least with this forum, there is always someone around that gets it.
I don't mind spending time alone because I always have things to do, but I am in a wonderful marriage (even though my husband doesn't always get it and sometimes pisses me off) that will be 40 yrs old in August. However, we have two sons who live on the east coast and 2 grandkids whom we miss terribly. One of our sons is lost in terms of his career prospects and he misses us terribly, even though he has a wonderful wife and a stepson and a daughter. He has always been more dependent on us than has his brother, and he had a very hard time leaving home to go to college. He has a university degree that he doesn't use, and it is pretty worthless without at least a Master's, but with that he can do all kinds of stuff. He also has an LPN certification but walked away from it when he failed the national boards. I tried to explain to him that many, many people fail those tests, just like the bar exam, and they just go back and do it again. His answer was, "Yeah but you didn't fail the bar exam." Well, I also didn't just have a newborn to care for and a full-time job when I took it, but he didn't see the difference. I know that he is very lonely, and his wife has confirmed that. My husband and I are trying to do whatever we can to make moving out west near us, because I feel that he will be happier and his wife wants to as well. I know that I will be happier having them around, because I am very lonely for him myself. I guess there are many different kinds of loneliness, but if it gets that bad it definitely leads to depression, which is a whole other ball of wax but definitely related. Our son is seeing a therapist, which I am very glad about, and I hope it helps, because he has almost all of the side effects listed in that article and I am very worried about him.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Fighting the Battle of Ms
Inspiration loneliness & just getting out of bed, everyday.
Changing the timing of your med intake. 
