friday7 Posted October 23, 2009 Report Share Posted October 23, 2009 I've been here before but that was a while ago. SO I thought i"d introduce myself again.HI my name is Susan. I'm 43 and was diagnosed with POTS about five years ago.I"ve been unable to work and most of the time i can't drive. I'm alone a lot because of this. I'm living with my elderly parents, and my father is severally sick, and also has Dementia. My mom takes care of him and it is taking a tole on her. It's pretty depressing living here, but I have no choice. I used to have my brother and niece for company but they haven't been coming over as much these days. Its very hurtful. I know they have their own lives and are busy but can't help but feel rejected. especially since I have no one else and all i want really is someone to watch tv with sometimes. But it seems my brother doens't understand. We used to be good friends but these days it seems I can't do anything right.I have gotten better since i was originally diagnosed. I went from being in a wheelchair to walking and using a walker in the stores. But I just have a hard time dealing with being unable to get out into the world. I feel guilty about not doing things and blame myself a lot. I have been reading a lot about mindfullness and that has helped. Trying to live in the moment. But it is hard.WEll that's about it I guess i'm not feeling up to writing any more since i wrote this whole long post before this,and then accidentally lost it somehow:(. I"m also sorry about any typos. But I'm having a hard time reading today and so I can't go back in a proofread right now. Susan Quote Link to comment Share on other sites More sharing options...
erikainorlando Posted October 23, 2009 Report Share Posted October 23, 2009 Hi susan.Hang in there. We are all here for you. It is difficult. I find that I get very snapppy someitmes...very irritable. It is difficult road sometimes. Try to post to stay connected with some of us. There is great suppport here. You have improved so you know there is hope. All the best...Erika Quote Link to comment Share on other sites More sharing options...
janiedelite Posted October 23, 2009 Report Share Posted October 23, 2009 Hi Susan,Feel free to let us know when you're having a tough time. Folks here are so supportive. When I'm flared up, I feel so sick that I don't even want to be around anyone else. But when I come out of the slump and garner enough energy to interact with folks again, they've move on in their lives and I have to play catch-up. It's so hard. Sometimes I've felt so isolated that I wonder if there was something just wrong with me, but I have to remind myself that people are busy, selfish, and sometimes just don't have a frame of reference for our suffering. And I give myself a mental pep talk to boost my courage, pick up the phone or send an email, and usually people welcome the interaction when I focus conversation on how they're doing. It sounds like your living situation is rough. I'm sorry. Congratulations for pushing yourself to get out when and how you can! Let us know how you're doing. Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted October 23, 2009 Report Share Posted October 23, 2009 Hi! Welcome back! Sounds like things are quite frustrating etc. Hopefully you will be able to use us as a source to vent. If you have questions or something you want to talk about, everyone here is quite helpful and good "listeners". Quote Link to comment Share on other sites More sharing options...
Broken_Shell Posted October 23, 2009 Report Share Posted October 23, 2009 Hi Susan,Welcome back! I am sorry for all of the loss and frustration in your life. I know how hard it is to be unable to care for your family the way that you want to. I hope that it can help you at least a little to know that all of us here understand and really do care about you. I'm looking forward to seeing you posting again.~ Broken_Shell Quote Link to comment Share on other sites More sharing options...
potsgirl Posted October 23, 2009 Report Share Posted October 23, 2009 Hi Susan,Welcome back to the Forum. You'll find so many others here who understand almost exactly how you're feeling. It's got to be especially difficult for you living with your mom and dad, especially when you're dad's so ill and your mom is expending a lot of energy taking care of him. Do you have any friends besides your brother/niece who might be able to stop by just to visit?It's great that you've seen improvement! This must give you hope that one day you'll see even more improvement and possibly be able to volunteer or take a part-time job to meet others. Keep concentrating on your mindfulness, and meditation is great, also. Positive thinking can go a long way!Cheers,Jana Quote Link to comment Share on other sites More sharing options...
friday7 Posted October 28, 2009 Author Report Share Posted October 28, 2009 Thank you all for your thoughts. I really appreciate the support. Susan Quote Link to comment Share on other sites More sharing options...
friday7 Posted October 28, 2009 Author Report Share Posted October 28, 2009 Hi Susan,Welcome back to the Forum. You'll find so many others here who understand almost exactly how you're feeling. It's got to be especially difficult for you living with your mom and dad, especially when you're dad's so ill and your mom is expending a lot of energy taking care of him. Do you have any friends besides your brother/niece who might be able to stop by just to visit?It's great that you've seen improvement! This must give you hope that one day you'll see even more improvement and possibly be able to volunteer or take a part-time job to meet others. Keep concentrating on your mindfulness, and meditation is great, also. Positive thinking can go a long way!Cheers,Jana No. I actually only have one friend that I had before I got sick. And since he hasn't had a car for the past year I don't see him. I used to talk on the phone with him but it always wound up being a discussion about how we could get together or trying to make plans with me. He just didn't get that I couldn't do it, and It would just be nice just to talk on the phone.So I haven't called him for a while . I got fed up with it. there was really no point.I just found out I have an ear infection ...again, so at least that explains why i felt extra tired lately. Hopefully when i get rid of it, I'll feel a little more up to trying a volunteer thing.thanksSusan Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted October 28, 2009 Report Share Posted October 28, 2009 Yeah this is a tough illness. Tougher than anyone without it would realise. I think we are all heros in some way. Quote Link to comment Share on other sites More sharing options...
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