Emotional Affects Of This Illness

[Tammy]

I have had this illness for all to long. Due to the severity, I have been home bound for years. This past year, I have become extremely lonely. I have lost track of many friends as activities they wanted to do I no longer could. I can not work or really even rely on my body enough to volunteer. I use some social media to stay somewhat connected to the world, but it really does not help much. I have pets. Any ideas of what can help with the loneliness this illness brings?

[Faintinggoat]

This is a really good, and relevant question to many people I believe. I know that I have struggled with isolation the past few months. Social media, and pets help to some extent, but it just isn't quite the same as having quality time with friends. I have a few friends who are willing to come visit me at my place, and just hang out watching TV, playing games, etc. Is there anyone in your life that you wouldn't mind asking to come over and hang out with you? I know that this can be hard. I know sometimes with me it's hard for me to ask someone to come visit because I feel bad that I can't do a lot of things with them. Other times, I feel very lonely but just don't feel up to asking someone to visit (sometimes that feels like it's more exhausting then going out and doing something), but that also perpetuates that feeling of loneliness.

Lots of love,

Fainting Goat

[gertie]

I have been in your situation for years. At first it was very lonely & depressing. Now maybe because I am so sensitive to fragrances & everyone seems to take a bath in perfume before they visit I actually prefer to be alone. I know that sounds harsh but I'm so much sicker after their visits. I just don't have the strength anymore to deal with it.

I do enjoy phone calls but most people text & maybe because I'm older I hate it. I do miss the personal contact & the feeling of having friends to talk with. Summer is easier for me because I can feed Hummingbirds, birds & wildlife or have flowers to look at. Winter is very dreary. Sorry I can't be of help.

[Hope]

This may sound tacky, but they have those agency's for people who need help around the house, or just a companion. If you have good insurance you could see if they cover companion services. Also, sometimes the city you live in has programs for shut in's. I don't use this myself because I still have quite a bit of family around, but I often think of what my future will hold and I might use this option. Have you found Potsy Paradise on Facebook? It's a nice group. I hope you find the company you need.

[Faintinggoat]

Also, to go on what Hope said, churches will sometimes have people that do stuff like that as well if your insurances doesn't cover something like that.

[millyaulait]

I've only had to deal with this for a few years now but I've had the same thing happen to me. I've become withdrawn and I'm just in my house alone for most of the year really. I think it's important to reach out to people and say "Hey, why don't we meet up for a coffee?" or similar, I know it's tough because we aren't always well enough to do that, and symptoms can be unpredictable, but getting out of the house is so important in my opinion. Or even ask them to come around to your house, maybe think of some group things you can do at home that don't require too much movement, maybe like a movie night?

I have a cat & I think that without him I would be completely lost! Sometimes when I'm just too sick to see people he is always there no matter what, always makes me feel a little better but it doesn't even begin to replace human interaction. I think we can get used to not seeing people and it becomes our 'normal', but in my opinion it can be really detrimental to our mental health.

Keeping yourself busy is good too, I know that when I can't see anyone (due to them being unavailable or such) I try to find something to occupy my time with, then substitute seeing them in person with a phone call or something like that. Do you have any hobbies or interests right now? I love dressmaking but these days I just can't sit up long enough to actually make anything, so instead I look at patterns and clothing that I might like to make in the future instead, anything that occupies time more is great.

[Ckitz]

I have been ill for many years. I used to cry at the thought of having to run errands. But I was a single parent with no support, so I had to do things no matter how I felt. I have learned over the years that if I allowed my physical fatigue or pain to determine if I participate in life, I would never leave my home. I have learned that once I am involved in interacting with people or experiencing a positive social event, it serves as a distraction from my suffering. I am limited time wise, because it, in turn, activity can make me more ill., and of course, standing is tough. It is a tough balance. But isolation only makes things worse. Now that my children are gone, I have two little dogs that bring comfort, and force me to go outside. And after many years of failed attempts to find something to volunteer at..because feeling useless is no fun...I am happy to say that I now go to nursing homes and schools with my registered Pomeranian therapy dog. I only spend around an hour to an hour and a half of my time, and only once or twice a week, so I can pull it off.It is not easy, but the alternative is loneliness and no distraction from my suffering. Having said this...I know everybody has different problems and limitations that can be incredibly challenging...I just know that I am stubborn, and refuse to be totally left out of life....and so push myself, even though it can be unbearable.

[1kate1]

Thank you for sharing so openly what so many of us experience. My battle is with guilt. I feel so guilty that my kids are growing up without the mom I could have been if I felt healthy.. and my husband has a wife he didn't bargain for.

[Bigskyfam]

Agreed. Same feelings 1kate1

[gjensen]

Tammy, what do you like to do? What kinds of things interest you? Can you get out at all? Right now I can't drive.

I do not know how you feel about going to church, or if you could pull that off every now and again . . .

Alicia, do you have or like aquariums or terrariums? I ask because I like the stuff that you mentioned. I have found that I like my house more if I bring the outdoors in. An aquarium coupled with a plant light or two with some plants . . . I like terrariums and aquariums. Especially if what is going on inside them has some interest.

I have also found that full spectrum lighting helps me. The short winter days drag on me before they end. Full spectrum lighting where I like to sit helps me.

Kate/BigSky, I am struggling with the same. What I am trying to do is take advantage of my problem. I can't do as much, so I figure that it is time for the boys to be men. I can focus more on teaching them, and hope that they will be better for it. That interaction is good for them and me.

Now that there is more on my already overworked wife, I am trying to think of how I an take some of the load off of her.

[KareBear]

I think any parent with this illness or any chronic illness deals with those feelings of guilt. We put more pressure on ourselves than others do though so I think it's important to remember that what your kids will remember most is you being there for them when they need you and you can do that even more now! You can take the time now to communicate daily with them and see how they are doing. Give advice. Just chat and spend time together. You can now give them your full attention without being distracted. That will mean everything to them. The times you share together now will be more cherished and meaningful. Emotional support and love is what is most important and that you can still give!

When they have events you cannot attend, maybe have them come home and tell you all about it and still share those moments. Tell them how excited you are for them or how proud of them you are. I honestly think it will be just as special. We put so much more pressure on ourselves, and children are understanding and adapt. You didn't ask for this, so dont be too hard on yourself

[lifeless]

I love you all. was showing a nonbeliever this site. emotional issues have been my worst part because it cripples us from some wellness because of the mind/body and all the exhaustion. I could keep talking but let's let this mean person keep learning! can I say that? I just did. the person that gave me big PTSD in my MID LIFE. lordy lawd!

I say I will be back and I need to try cause then I do not come back. not thoughtlessness AT ALL. POTS!!!!!song quote

"without love in the dream, it'll never come true."

oxxoxoxoxoxoxoxoxoxooxox