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Having A Rough Time Lately/ Social Life


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I'm really really lonely and I just miss my old life so much. I really don't go out ever anymore and it's making me stir crazy, but I just feel too sick. I miss my friends and interacting with people my age, right now I just see my homebound teachers. I so wish I could go back to school, but it just seems impossible right now. Everyday I think how much I want to be out making a difference in the world and living life to the fullest, so it's just so frustrating to end each day knowing all I did was sit on the couch and write two paragraphs for homework. I have been trying to push through and went to the grocery a few weeks ago which was a horrible experience. I used to be able to walk around and feel sick in stores but lately I physically can't even walk around. I think I slowly need to build up to going out again, I'm just not sure how? I'm going to try and hang out with my friends over spring break I just always have to cancel... Ughhhh.

Thanks for listening guys :).

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Sorry you're feeling so down puppylove :( I have definitely been there...a LOT. Especially in the beginning of all of this, it was so difficult to accept the fact that my life had changed. I went from being super active, super spontaneous and fun, to acting like an 80 year old--worse, actually! lol Things have slowly gotten better for me, which has definitely helped, but I still have my bad days and sometimes weeks, and I get feeling a little blue. I still miss the old me. I am holding out hope that someday I'll get her back completely, but in the meantime, I just keep pushing through. It's funny, sometimes I'll make myself go out, and I will feel awful, but then I'm happy I did because I put so much effort into convincing people I feel good that, for a moment, I almost believe it myself lol. Of course, the crash the day after is a swift kick right back to reality, but sometimes just those couple of hours of a good laugh we people I love is what I need. On the flip side, I am also learning that it is okay to say no and stay in and listen to my body when I don't even have energy in my "reserve tank" left and I'm just too exhausted to pretend. I think accepting those times and making the best of them (i.e. getting some writing done, catching up on my favorite shows, or reading a good book) has really helped, and I just try to think of it as giving myself some much needed "me time".

Hope you feel better soon! Maybe you can invite some friends over for a girls movie night? Social benefits right from your couch! My best friend does that with me when I'm feeling really bad...nothing like a good ol' "Friends" marathon to get the spirits up ;)

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Oh sweet, I'm so sorry to read.

I just want to encourage you that you are not alone in dealing with this loneliness even though it feels like it. I struggle with this so much too, as many here do. The thing is with our condition very few people really understand what we are going through- even sometimes our closest family members and most doctors who specialize in autonomic dysfunction don't really "get it.". I think unless you have this, you can't really understand.

For me the hardest moments are the times I find myself in a crash after I've had a good day or two. Or if Ive just been with friends/family and Ive pushed myself to go do something and it makes me so sick that it hurts all over and I realize being social makes me so sick. Then I find myself in this deep pit of despair

realizing once again that I'm back in prison. I usually cry for a while in bed where no one sees me and letting myself cry helps. (It actually activates the parasympathetic system.). But, I never let myself

stay there too long. Here are some things I do that really help me:

When I'm strong enough:

- find comfort in my faith (for me this is reading the bible, listening to praise music and talking with God)

- focus my energy on the needs of others. (I have one old lady friend who goes to our church. She has ALS and has lost the ability to speak so I text her regularly. I can relate with her so much because I've

lost my ability to cognitively function like I used to and she has lost the ability to speak. The difference is she is facing death and I am facing life, life in this temporary prison. Anyway, I encourage her and she encourages me.)

- invite friends over for one on one time by the fire w a hot cocoa/tea.

- talk online w my new friends, like here on DINET

- read and research about my condition so I can better understand and fight

When I'm too weak:

- cry

- remind myself that I can make it through this moment. (maybe not the next, but this one I can)

- watch Netflix to take my mind off it

- read a fun magazine

- window shop online.

I wish I could say I look forward to the day when we are both better and can live life the way we used to

But the truth is we don't know what the future brings. So in the meantime we try and live life to it's fullest

while in bed or while struggling w these trials. And I trust that this suffering will somehow help me to be a blessing.

I'm glad you shared how you are feeling. It reminds me that I am not alone in this battle.

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I completely understand. I feel the exact same way. I seems that the only people I really see is doctors, lab workers, pharmacy staff, and my family. I'm 26 and still live at home because I can't afford to not be. That makes it more difficult to relate to any of my friends though since most of them have their own homes or apartments, have good jobs, are in serious relationships or are already married, have kids or planning on having kids but because of this stupid medical problem I am not doing any of that. If you want to talk more about this with me since it seems like we can relate to each other quite well shoot me an email.

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Its tough, like everyone has said. We have all been there. It is freezing where I live and I think this causes even more isolation. When it is warm out, sitting outside just makes me seem like I am more involved with the community. Also, more people are out and about the neighborhood. Right now everyone is hibernating, they only go out when they have to, and all our houses are shut up tight. I have been really lonely and depressed. But... spring will be here soon.

So if you can soon, try just sitting on your front porch or lounge chair. I understand wanting to go out and change the world. I miss that too. You are young and there is a good chance you will get better, but that doesn't help you now, I know. I can only tell you we are here for you, understand what you are going through. I will say when I am feeling bad, sometimes talking to someone on the the phone, talking not texting, seems to bring up my mood. I talk to someone about topics that do not concern my health.Can you skype or face time your friends? My daughter and her best friend often cannot go to each other's house, so they will often set up their skype and go about their night watching t.v. or whatever together.

I also have listened to a couple of the oprah and depak medatations that some one mentioned on this site and they reminded we have to have balance and passion. The passion is what struck me, I need to find something that I can be passionate about again. I have centered on my health and its restrictions and what I and my family have lost. I need to find something I can do that I can be passionate about. Maybe that is something you need too. I know we do not have as much energy or physical capabilities but there has to be something we can be passionate about, while we continue to search for answers. I am trying to search for that, whether it will be a craft, writing, some type of volunteering from home, cooking?

Hoping for smiles and better health :D

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HUGS. Sorry to hear this. It sounds like your goal is to get out of the house more. That's my goal too. I get stir crazy every few days and have to get out. The memories of getting out keep me sane me for a little while then I have to get out again. :ph34r:

Do you have someone who can drive you ? Do your freinds should have their licenses ? If so, you could sit reclined with your feet up. I do this everytime someone drives me. In my case, sitting in the front seat is less likely to cause nausea.

Have you tried using a motorized cart when your out ? It doesn't eliminate my OI but it helps me save up energy so my OI isn't as prevalent. I can think longer if I use a cart than if I try walking. Longer being the key word here ... lol ..

Have you looked at Mast cell protocals yet ? Zyrtec help me with my OI at first but those effects wore off. But that's just me tho.

Support garments may help. The thigh to under breast type seem to help me but the others didn't. We're all different here tho.

Staying hydrated and well fed while out helps me too. I need extra sugar if I'm out but not too much. OJ works great but glucose tablets help too. I was shocked at how much of a difference this made for me. A small cup of coffee with some sugar and milk work great to revive me if I'm overly tired.

hope you get out soon ... tc ... D

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Hugs. I really really understand how this feels. I have it too with my friends and then with my kids. I feel isolated on all sides and it *****. If I didn't have people coming to do therapy with the kids, I don't know if I would see any adults besides doctors! Even now it's therapists and doctors. I am sorry you are struggling :( I really like the girls night movie marathon idea. Or what about a crafting evening? Makeup night? Even if you feel bad.... push through it. Getting that social contact will help your mood and spirits and will probably make you feel a little better. Even when I feel physically awful, having connection with others and spending some time with them totally makes me feel lighter and better in a different way. It all helps :) Hang in there girl.

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(((Hugs))) puppylove. I so hear you. I struggle with this myself. Since I've been sick for 15 years I don't miss my old life anymore, I miss the life I dreamed I could've had but it hurts all the same.

When I was in HS all my friends dropped off & then when they saw me they stared or just looked away, it hurt like death. You have to allow yourself to mourn and let it out but not so much that it consumes your being.

I've been trying to look for more activities to change things up and that don't take a lot of energy. Listening to music or audiobooks, YouTube videos, coloring etc. it helps a little but I'm still crazy bored and lonely.

I'm also learning about this cfs pacing advice.


If you want to build up to activity start where you are, walking around a store is probably too much. Can you invite a friend over for a movie? Or can you go out for coffee? Brainstorm things that are less demanding. Maybe even make a list to refer to.

As for friends, it's so tough, so very tough :( I don't know what kind of relationships you have right now but look at what they are, where they are, and what you can put into them or eliminate them.

If you have unsupportive or critical "friends" don't be afraid to cut them out, they are draining you!

If you have friends who text or fb you see if you can add a little more to it. Can they come over every other week? Every week? Or simply text more to keep you in the loop.

Keep researching and searching out solutions. I recently learned about craniosacral therapy and am giving it a try. I don't know if its going to help but it's worth a try because it sounds like it could be something to add to my toolbox.

And lastly thus is a post i copied from fb about advice Mayo have a girl on getting stronger. I'm sllloowwwlllyyy working towards it

- work up to 30 minutes of continuous and vertical cardio exercise daily (eg, running, elliptical, rowing),

- increase daily physical activity (eg, walking, chores, stretches, yoga) to 4 hrs/day

-and then try returning to school for 1-2 periods/day.

- we had never gotten such good specifics before, either, which is why we are feeling so positive. They said the 30 minute cardio exercise is critical for POTSies; this is what makes the veins do a better job of constricting and getting the blood moving all day long. It has to be upright cardio, so running, biking, elliptical, stair stepper, aerobics--they all count.

They came up with a plan for The physical activity is to prevent deconditioning, which is very common in POTS b/c you just feel so miserable you don't want to get up and do anything. It is separate from the cardio exercise, and includes anything that gets you off the couch/out of bed but isn't continuous cardio. This is why my daughter's horseback falls under this; she can't expect her horse to canter for 30 straight minutes but is physically moving when she's riding. They went thru with us what she likes to do and that's how they came up with the list of physical activity for her, so the list will be slightly different for each person. They said every hour she has to get up and give 5-15 minutes.

From what they told us, I'd say try to increase by just 1 minute every 2-4 days, and make sure you're doing upright cardio that is fun for you. And try to get up every hour and just move, even if it's just to take a walk thru the house for a few minutes

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I'm so sorry you are feeling this way. I think this ailment has to be even harder on young people than it is on adults. It's got to be hard to find yourself when your body is so limiting. I know the goal is to be able to do things outside of the house. But, is it possible to have your friends to your house at least once a week for movie night, or pizza night, or video game night, or board game night...you get the idea? Maybe this can help you maintain your friendships while you're struggling. And, I know it is a tough idea to process, but might you be able to do some things with your friends out of the house if you used a wheel chair? I know, I know, I struggled with getting a handicapped placard for my car. I have finally accepted that if I travel by plane to go see my dad in FL, that I will have to ask them to drive me through the airports on the carts because I frankly won't be able to do it any other way. But, I've decided that my hang ups about these things are my pride and vanity talking. If I want to do what I want to do, I'm going to have to find new, creative ways to get it done. ;)

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Hi puppylove,

I'm currently a senior in high school but during my sophomore year my POTS got so bad that I too had to go on home bound instruction and felt imprisoned in my own home.. And even my own body. All I wanted to do was go out with my friends. I felt like I was losing some of the moments everyone claims are the best in your life. Each day I would get up only to see my instructors and sit on the couch. Whenever I would try to go out I would feel horrible and have to go back home. I felt more and more alone as the days passed.

Through it all I found one really good friend that I felt I could truly lean on. I would go to their house on some of my good days because I knew they understood that I was sick. They would let me just lay on their couch and hang out like that was totally normal. They let me vent and cry whenever I just needed to get it all out. Most of all, they helped me accept what I was going through.

Remember that just because you can't go out doesn't mean you can't see your friends. True friends will be by your side even when your feeling your worst. Sadly I found out who my real friends were through it all, but at least I knew I had the support of the ones who stayed.

One thing that I wish I had was someone with POTS to talk to. I felt so isolated because no one truly understood me, but that's why I joined DINET, because we all are going through it together. And I know that I'm never alone.

The one thing that truly gave me my independence back is compression stockings. They enabled me to get up and walk around and attend school once again. They weren't a cure all, but they did help A LOT!!! I would 100% recommend talking to your doctor about them.

If you ever need someone to talk to that has gone through the isolation of home bound and understands what your going through please please please don't hesitate to message me! I wish I had someone like that when I was dealing with it.

- Brynne

(I'm sorry if this isn't too inspirational, things will get better, I promise! Just keep your head up and don't stop trying)

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I know this is so frustrating for you and I'm sorry you are having to deal with this! Have you tried the Meet Others option on this site? If you're still in high school it would be wise to have a parent take you to a coffee shop if you do meet someone with dys in your area, but I'm betting there are other young people nearby who would understand and emphasize.

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Thank you so much everyone. It always makes me feel better to talk to people who understand :). I have a couple good friends, but they really don't get it of course, and I'm always the one asking if they want to hang out. I think I'm definitely going to try and find people in my area with POTS- thanks for that idea!

The Gastrocrom still helps a little with nausea but my dizziness has been bad. I'm in the process of getting compression stockings so hopefully they will help with that.

I hate bananas- that sounds fun! I have been entering art completions where you send in your entry and I really love art so I will look into that. :)

Brynne- wow I could have written your post lol! I'm in homebound too and I feel exactly like that.

Thanks again guys.

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I'm happy you and I can relate and have someone who understands but I'm sorry you have to go through all this! I just wanted to add that I left at the beginning of march and was out the whole rest of the year but was able to RETURN FOR A FULL DAY in August. I know all of this can be discouraging but it will get better!!

For me I had to stop trying to do the things I use to...and even stop trying to be the same person. I had to accept who I have become and what my new limitations are. If I tried to live my life the same way as before all I would have we're bad days. I learned to voice my concerns with my doctor, adapt to my energy levels...and most of all I learned to admit when needed help.

Instead of getting upset about what I couldn't do I learn to be proud of what I could. So no I couldn't go to school, I couldn't see my friends and I couldn't go out, but I could complete my school work, I could use a creative outlet to release my thoughts, I could still be with my family, and still laugh and be happy.

For me my outlet was writing. I often wrote my story to diagnosis and treatment over and over again each time in a different way, it let me cry and be sad but when I finished writing it I could put it aside and push it out of my mind instead of fixating on it and bottling everything up.

The hardest part of it for me was I tried to pretend like I was ok. I didn't want to accept it, I didn't want to cry in front of other people, I didn't want to admit I wasn't "strong enough" to handle my problems on my own. I learned though, that it wasn't a matter of being weak, I was stronger than I thought, I was dealing with such an isolating condition on my own. That takes more strength then being healthy and happy. All of us with POTS are so strong. Yeah that sounds ironic because most of us are too weak to do much but we have the strength of all of us as a community together. When doctors don't have the answers we have turned to each other for support. We find joy in other POTSies accomplishments and sorrow in their defeats. Know that we can relate and understand what your going through on a level not many others can.

Well I got a little off topic but I just wanted you to know I am doing better and have gained back my independence. It will get better but if you need support, help, advice or even just a good cry we are all here for you!!! Again if you need anything let me know - Brynne

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Hi puppylove

Its hard when u feel Your life pasning by. Its lonly. One advice is to make Your bestfriend Your self. Ust like on try to make a friend Happy u say, well can i do to make me Happy to day ( Whit the limits the illneses give, being one own best friend have the advanteges of fullt understanding :)) .

I tryed to invite People for Movies, when They didnt have the time, well i invited myself:) and i got the best Seat in the house :)

Do u use a wheelchair when out ?

I do hope u gett to spent time Whit Your friends over spring break.:)

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I second what Kellysavedbygrace said!

I find that because I have said "no" to so many social events I don't get invited much anymore :(

I am not sure if this helps you but there are a lot of lonely people in the world- even sometimes those who are in a crowd of people. A positive thing about this illness is that I have gotten comfortable being alone. Many people never get used to being by themselves.

I talk to God a lot and I talk to my pets ( not sure if you have any). I keep a notebook which is full of the needs of others. It is my prayer list. yes, I do pray for myself too, but it puts my mind on the needs of others.

Today although it took most of my energy I made a meal for a woman who is sick. It was hard for me to do that but it changed my focus for a short time.

I just want you to know that you are not alone in feeling lonely. At times I feel as though I am getting left behind by everyone else. I almost feel a little envy when my 60 year old mother tells me about her tennis matches. I feel like I SHOULD be running around after green felted balls.

Try to stay hopeful that tomorrow will bring better health! I can't look too far ahead because I get overwhelmed.

Anyway hugs to you- :wub:

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