Single And Scared About Taking Care Of Myself And The Future

[kitshalleen]

HI everyone,

I hope that this message finds some of you doing well. I think that my title says it all. I got sick in my 20s and it's 13 years later. I'm too sick to date, and I am definitely not having kids. Sometimes I'm so tired that I can't feed myself and it terrifies me. I don't even think that the doctors understand why we are so tired. Actually, that's what my doctor told me. Anyway, I'm also have a ton of pelvic/abdominal pain. That's usually my worst symptom, and that's from interstitial cystitis. Anyway, I thought it might be nice to have someone else in my situation to talk to. I've tried this before, but sometimes we're all too tired to e-mail. I know that it's unhealthy to worry so much, and I'm trying to live in the day, but it's always in the back of my mind. Anyway, are there other singletons out there?

Take care,

Kit

[ramakentesh]

Its really tough I know. A few CFS patients back in the early 2000s were trying to set up houses for CFS patients - to house 7 patients in each house with access to medical treatment and such. it would probablyh be a pretty depressing place though

[kitshalleen]

yes and no. it's sort of like a support grop. it can be depressing, but also has a lot of benefits. anyway, I don't think that will be happening. however, when I visit3ed my grandma in a nursing home, which was very niice, I kept thinking tha ti belonged there. that was depressing, because everyone was quite a bit oler than me, and well there are preobably a lot more deaths, but it was a nice place. anyway, I was really just looking to talk to people in similar situations. maybe make and online friend idon't know.this isa great place. okay should try to sleep.

take care,

kit

[Batik]

If you have ME/CFS, there's an online chatroom at the Phoenix Rising site you might like.

What's your current living situation? Do you have carers coming in from social services, or the equivalent in your country? If not, can you apply for them?

Are you newly single? I had a rough time when my ex-partner left as I was particularly ill at the time, and I have severe ME/CFS.

[kitshalleen]

maybe I should have given this a different title. I'm sort of trying to get the crowd that doesn't have a lot of family. right now my parents are helping me, but at a certain point, they won't be, so I was trying to get people in the same situation. I guess i'm looking for the people who are too sick to date, but dont' have a lot of social interactions. thanks a lot for the suggestions.

[Racer]

I know how you feel! I am single, and live with my parents. While it is great to have my parents for a little support, I sure dont want to stay at home forever! (AHHH!) I have never been in a relationship (I know, pathetic), and I just cant see it happening due to my keen ability to say the most inappropriate things at the most inappropriate times (not intentionally of course).

One option you have (if you live in the US) is your local center for independent living. I have went to them before for help, and they have been great. They should be able to help you with finding housing and care options. One option might be a apartment or house with another person (or a couple people) who have similar issues. In this sort of arrangement, everyone does there share according to individual strengths. A nurse can usually be scheduled to stop by at specific times threwout the week if needed.

The next step from this, might be something like a group home. These sorts of places usually have more people, along with rules you need to follow, but also more care when you need it. You usually dont have a choice of who your housemates are though! Good if you get great housemates, but bad if you have some creepy guy following you around all day!

Nursing homes are reserved for people who absolutely need 24/7 care and supervision. While they can be warm and caring places, I worked at a nursing home for a few years (in activities). The particular place I worked, spending 8 hours a day there, I witnessed many of the big issues with these places on a regular basis.

Anyway, just wanted to say I can relate to being single, and that there are many options if you need day to day assistance

[Guest wishing&hoping]

I, too, can relate to being single and the issues about being alone. I have a network of people who help; a friend set up a spreadsheet for me where I can put down what I need. Not that there's always someone to help, but it's a big resource. It doesn't replace having a significant other; but when I look around at some of the relationships around, I realize there's no guarantee that a spouse/bf/so is going to be supportive and helpful. In fact, I've had problems in relationships with guys who just couldn't deal with my limitations. I've also come to accept the childless thing--I don't know how I could've raised a kid with this illness! So, I've come to accept where I am in my life, at 55; although of course I miss the companionship of a relationship. There's a template for a websate called lotsahelpinghands.com; you might want to set one up for yourself and invite friends to sign on. Beats a group home, IMHO.

If you want to PM on this to get more support, feel free. You're not alone!

[lissy]

I'm contemplating the single life (married) and I have children, but I think being sick has kept me in toxic situation. Everytime I plan to leave deep down inside I worry can I do all this myself ,but the bad relationship keeps me in flares its a dilemma! So I'm not single, but I am scared about taking care of myself when I become single.

Having a chronic illness is hard enough to deal with and lack of support makes it harder.

Praying for strength for all of Us.

Lissy

[Katybug]

Kit,

I feel for you as I'm in the same situation. I don't know what I'd do without my mom and stepfather right now. I don't have any great words of wisdom because I worry about the same thing...my future. I also worry about what will happen when my parents need my help because they are old and too frail to care for themselves. I know that will happen at some point too. All I can do is believe that this will work out...somehow, some way.

[NaomiSpellman]

I am a single mom. Does that count? I have Bipolar and possibly Pseudobulbar Affect and this makes relationships difficult, and it makes one unbearable generally. I stopped dating a long time ago. I go to bed by 6:00 p.m. and am also so fatigued that I can't imagine conducting a relationship. It is very stressful to be on your own with this curse. I often wonder if I've developed PTSD from years of stress due to getting sick again and again, having problems at work with symptoms, with no medical support to help understand what was happening inside. And yes, staying in an unhealthy situation is toxic to dysautonomia, but unavoidable if you are unattached and disabled. A healthy environment is a luxury that requires a considerable income in this country.

I would not survive without help from my family. It is difficult to accept help, and there is no end to the help one needs just to get through a day with this curse. I would like to care for my aging Dad, my parents have always supported me despite my inability to capitalize on all their support (pre-diagnosis). But I am having trouble taking care of myself and wonder whether I can ever get better.

I am thankful for the insights in the above posts re: onset or worsening of POTS with childbirth and with viral infection. I also experienced worsening of symptoms with these events, and after being hit in car (rear-ended).

[roxie]

I'm kindof in a similar situation. I'm in my 20s, single, & live with my parents. They take really good care of me but the part of me that wants my independence and a normal life roars all the time. It's really difficult. My parents are in their 50z but I have wondered and worried a little about what'll happen when they can't take care or themselves? I don't have an answer except to pray & try not to worry about the future. Along with continually looking for treatments and plugging away.

I also get the too tired to dating issue. Having been sick since I was 12 guys haven't wanted much to do with me. So I have my doubts on getting married. When my brother got married it hurt so bad & when he moved into his own house I cried too. My brother doesnt t talk to me much. My mom says she assumes he doesn't know how to handle my illness. So if something happened to my parents I don't know what I'd do.

I know there are independant living programs and social services to help if need be.

[Racer]

I'm kindof in a similar situation. I'm in my 20s, single, & live with my parents. They take really good care of me but the part of me that wants my independence and a normal life roars all the time. It's really difficult. My parents are in their 50z but I have wondered and worried a little about what'll happen when they can't take care or themselves? I don't have an answer except to pray & try not to worry about the future. Along with continually looking for treatments and plugging away.

I also get the too tired to dating issue. Having been sick since I was 12 guys haven't wanted much to do with me. So I have my doubts on getting married. When my brother got married it hurt so bad & when he moved into his own house I cried too. My brother doesnt t talk to me much. My mom says she assumes he doesn't know how to handle my illness. So if something happened to my parents I don't know what I'd do.

I know there are independant living programs and social services to help if need be.

This is scary similar to my situation! Down to the whole brother issue! I have a brother and experienced similar things.

Someone needs to develop a dysautonomia dating website!

[Kate2011]

I'm kindof in a similar situation. I'm in my 20s, single, & live with my parents. They take really good care of me but the part of me that wants my independence and a normal life roars all the time. It's really difficult. My parents are in their 50z but I have wondered and worried a little about what'll happen when they can't take care or themselves? I don't have an answer except to pray & try not to worry about the future. Along with continually looking for treatments and plugging away.

I also get the too tired to dating issue. Having been sick since I was 12 guys haven't wanted much to do with me. So I have my doubts on getting married. When my brother got married it hurt so bad & when he moved into his own house I cried too. My brother doesnt t talk to me much. My mom says she assumes he doesn't know how to handle my illness. So if something happened to my parents I don't know what I'd do.

I know there are independant living programs and social services to help if need be.

This is scary similar to my situation! Down to the whole brother issue! I have a brother and experienced similar things.

Someone needs to develop a dysautonomia dating website!

lol. Oh God no! I'm single and in my 20's so I completely understand needing someone to understand but can you imagine how difficult life would be if our spouses had the same issues? I don't think I could cope with that. lol. I can barely take psuedo-care of myself. I can't imagine wanting to to take care of someone else too. And with the same issues...we'd always be getting sick at similar times and possibly getting each other sick if his immune system is as crappy as mine...

It's a nice idea but I don't think I could do it with another Dysautonomia patient. :-/

[Racer]

lol. Oh God no! I'm single and in my 20's so I completely understand needing someone to understand but can you imagine how difficult life would be if our spouses had the same issues? I don't think I could cope with that. lol.

lol you are probably right