For me it's feeling adrift.... it's CFIDS driven, but I suspect also partly aging. I'll be 55 this summer. At this point I thought I'd be still working full time, have my house paid off.... but we have a large mortgage and I'm on SSDI. It's embarrassing to me. I know it shouldn't be but I was raised with a very strong work ethic and being a disabled homemaker was not in my plans.
When it became obvious I couldn't work full time anymore I thought I'd try part time. No go, I couldn't do it. I fainted at a file cabinet one day.... Me? the woman that worked in a shipping department, hauling boxes and running a forklift 8 hrs a day, and went to school full time at night to get my degree? Me? Who raised 2 great daughters alone, graduated the same year as one of them from college and made a new career at age 40?... Yes...Me.
It's been a huge adjustment. I dropped into depression for about 3 yrs. Thought about death. Ate myself up to 335 lbs on my 5'5" frame. Then my Dad died. He always lived life to the fullest and I felt ashamed... I had bariatric surgery, felt really good about losing 118 lbs and was pretty ok emotionally for about 6 months til the side effects hit. Now on top of CFIDS I have chronic gastritis and post bariatric post prandial hypoglycemia...but hey, I wear a smaller size so that makes it all ok, right? (sarcasm, much sarcasm)
We moved back closer to my kids recently. To say it wore me out would be a huge understatement. I used to pack in 2 wks, this took me 4 months. Unpacking took 10 wks more. But I'm here. My daughter is a mile down the street. My grandsons see me more often. The plan was for me to care for them after school starting next Fall so my daughter can go to work. I don't know anymore if that's the plan. I'm worried I won't be able to do it. What if it's a bad day for me and they need to go to an activity? To make it worse I'm afraid to ask my daughter if she still wants me to try. If she doesn't it will wreck me. If I don't have that to look forward to.... I'm just a disabled homemaker. I'm really trying to find pride in keeping house as well as I can and taking care of my husband and the kids, and my mom by phone long distance. I'm trying to see that it's ok if this is my path now. That perhaps there is something else I'm supposed to be doing and it just hasn't presented itself yet. I'm a very spiritual person. My spirituality is not the traditional Christian variety, meaning I don't believe in a being that is omniscient. I believe we all make up what is good, and what can be good. That we can draw goodness, love and peace from around us by respecting others, nature and ourselves. I lean on this, a lot, I wear specific crystals each day to aid my needs. For me it works, and works well. Today I wear blue chalcedony and rose quartz, for healing and peace.
My challenge is acceptance that my life path is changing, and in finding hope it might (please, Universe?) be better than I ever thought it could be even before this change in my physical abilities....

Oh Max, I so very much agree with you. Just reading Nina's response has me so sad for her and is a strong reminder that no matter how bad we think we have it there is always someone else suffering more.

Nina, thank you for sharing your thoughts, I don't think many of you all realize how much it helps the rest of us to hear the pain, loss, and struggles of others. I know it makes me feel less alone, and it's comforting that there are others out there who UNDERSTAND what I deal with and what I feel.

My biggest challenge right now is my relationship with my husband. He has never handled it well when I'm sick..l...isn't able to really SEE my suffering and mostly sees how it affects him.....what he's not getting, what he's feeling, how his life has changed. I know those things are important, that we need to discuss how this affects him.....he has always refused to do so, the only time he will discuss that is when I'm doing very badly and in the form of complaints. There's no balance, it's always about him. I've been in therapy for a year, which has helped me tremendously, he started therapy about 8 months ago, and we started couples counseling 4 months ago, all with different therapist's. The last month and a half I've been doing really bad physically and our sessions are leaving me in worse shape. I'm feeling completely beat up both physically and emotionally. I feel like my whole life is going to therapy sessions and recovering from them. I know that if I ask for a break he will accuse me of not wanting to work on things, he wants things to be better RIGHT NOW and will bully me into talking about "us" when I'm in no shape or mood to do so. So my challenge is having the strength to say "I jsut can't work on us right now, I need to get a little better first".

My second biggest challenge.......making sure I'm in the best shape possible to enjoy my daughter's wedding this coming October. I know I have to start now.

Anyone with loved ones nearby faces the same challenges as Nina, how do we balance the things we want to do for our loved ones with what we're really capable of doing? I've accepted all the ways I cannot be the kind of Mother I was pre-illness, all the things that someone else will have to do for or with my daughter. I'm so very fortunate that she understands and is willing to have me do as much or as little as I can. I am so very fortunate that she appreciates every little thing I can do.

She's coming over to spend some time with me today, and that is what helps get me out of bed every day........that maybe today my daughter needs me.

Thanks for you post Max, and thanks to everyone who reads this and gets it.

Generally for me it is not having enough energy. Even when I think I am doing much better, I hear about another mom's regular day and realize I have so much less energy and get so much less accomplished than she does. My best day is like 1/2 steam of her regular day.

I have great intense motivation for exercise, yet my body can only handle my job (about 6-8 hours of work from home computer work) a day. No more. Since we must have my income, I seemed doomed to a life of no activity, which means ... I will be overweight until I get this resolved. Which is a big fat bummer.

But I am working on praying my way out of this and am working on extending my faith in new ways regarding all of this, so I am hopeful.

I am just like an Eeyore stuck in a pit for a moment, but I will get out.

Hope is important!

I know that there are many people out there struggling with the same as or worse than me and that they keep on with positive spirits, yet my attempts at encouraging myself to do the same have always come across empty and distant to me. Then today, I stumbled upon this website, found this support group, found this thread, and found real people struggling and keeping on with positivity. This was ecouraging, and I don't feel so alone anymore.

I would have to say that my challenge is finding a job that won't exhaust the life out of me, leading me down the existential route where I wonder what the point of my life is if I can't even sustain it financially. About two and a half years ago, after yet another crash and burn attempt at gainful employment, I kind of gave up on the idea of me having a job. Time has flown, and I've been unemployed since, and the anxiety about my future disturbs my sleep...and my waking moments. (I live with my parents--which also exhausts me. It's a no-win situation, but living with the parents beats living on the streets.) So that's where I'm at right now employment-wise, trying to figure something out.

A second challenge I have is with isolation. I isolate myself from everyone, even my "closest" friends because I'm embarrassed and don't feel at ease around them. Nobody "gets" me, and I don't bother pushing their understanding of me because the notion that someone like me is an underachieving, lazy loafer living the good life is too deep rooted. (A second part of this challenge is not to compare myself to my friends/peers...and to be happy for their achievements and normal progress in life.)

My thoughts have always had a pessimist tinge to them, and I tend to mentally roll my eyes when confronted with over-the-top optimism, but when I look back at the way my life has played out, I have to say that the Universe hasn't been that unkind to me. Things could've been--and could be--much worse, so that's something to be thankful for. I don't know what sick games it's playing, and I would appreciate that it stopped toying with me, but I think that the the Universe will redeem itself one day.

These are invaluable shares to me. Thank you MaxPB for
your post. I see a bit of my own life in what everyone says.
I'm not presently in a relationship. I was married and then
divorced. This was in my 20's. After that I had several
serious relationships. This was before I became ill, of all
things, in my mid 50's up to the present time. So, I 'get' the
marriage counselling part that Genie talks about. I give you
credit for going and can understand what it must be like to
'try and explain yourself' to your husband. It's difficult enough,
or at least it was in my case, without the added layer of an
illness.
In answer to my biggest challenges now. One is finding
focus in my life. I have enough good days that I can
volunteer. But there are days when I feel 'this isn't enough'.
I too worked and was used to getting a pay check. That's a
big change to deal with when someone retires. Sick or not.
I still have financial challenges with medical treatments
which aren't covered by insurance. House repairs not to
mention car repairs. And the same family issues. What I
mostly call 'life'.
Hearing Nina talk about her spiritual views and MaxPB
that's also what has sustained me.
Reading inspiring literature, doing a meditation practice
when I'm up to it has been very nurturing and sustaining.
I'm better at reaching out
than I was before. I'm in some very good support groups.
When we aren't working, I will say, that is a
challenge, to know what 'the meaning' of our lives are like
Unavailably says. But I do feel we have to go 'beyond'
what society defines as 'meaningful' and know that we didn't
create this illness and that each person has worth regardless.
And that we can give ourselves validation for being of value.
I believe that we do that by coming here and sharing
and by encouraging one another. Because as we know, if
we don't do it for ourselves and others, not likely, that others
will.

.

My biggest challenge is trying not to over commit myself. I love to help others, but I need to take care of me. I have strong beliefs about the need to do my share of the household tasks. I feel guilty when I feel I am not doing my share. There is extra on our plates (my husband and I) because we chose to buy a new home that is currently under construction. This means lots of paperwork and many decisions. When I do too much physically or mentally, I get so frazzled. I can't seem to stay focused on a task in order to complete. I bounce from one task to another and none of them get completely done.

my biggest challenge is digging out of the negative thoughts pattern the I shoulds nearly 25 years hanging in, still angry at my life.. someday never arrives.

6 years ago had to move into assisted living because everything fell apart.. just so frustrated but it could/has been worse

Yes I see myself to in a lot of the posts too. Mine is to realize that it is ok to rest and to also realize I do have a condition. I try to fight it and that is not good for me at all. Thank you all for the stories.

Thank you all for sharing - so comforting to know there are people who understand !!! Blessings !!! PJ

I'm so glad I started this conversation, I can identify with every single response. Our journeys are unique but even so we share common challenges and its really good to know I am not alone.

Thanks so much for sharing.

I just wish there was a "like" button for the replies. So many of them resonate with me personally. I want to thank each one of you for sharing and thank Max for addressing it for us.
My biggest challenges are similar to many of the others. My inability to do what I used to do...I am a mother of 6 with an amazing husband, went back to school when my youngest got in school, got my degree in nursing and a year later...bammm! My body betrayed me! I always loved that I felt that I could control my destiny. God showed me different. Without my faith, I, too feel like I would be a depressed mess. BUT, I tell myself that it is okay to have a 15-20 minute pitty party to grieve over my loss and move on. I have often asked, "Lord, what am I supposed to learn from this?" I have learned things. Things like...it is okay to ask for help ( a hard one for me, as I was always the one doing the helping before.) But the things my children have learned from this has been amazing. They are more attentive to others, they are more compassionate toward those with disabilities, They have become more independent. When I look at my challenges and think that it is making them better people, it gives it some meaning to me.
I wanted to be a nurse, share in the financial situation of our household but that wasn't what I was supposed to do. Not now anyway. Kind of a bummer that I don't even qualify for disability since I don't have my 10 yrs in for S.S... I was at home raising kids instead and was just getting to work on meeting that requirement to work towards retirement.
Life has a way of reminding us that we are not always in control..and I put my faith in God...certainly not my body :)
There's only rainbows after rain!
Love to all...

My biggest challenge is not being able to do what I have to. I have been doing extremely bad in college, and I am unable to work due to the constant fatigue. I often find it difficult to even make my bed most days. Concentrating and physical labor are too exhausting for me, and leave me out of commission for days!

https://graph.facebook.com/hanginbalance/photos/a.442875379095029.97809.161974437185126/547743558608210/?type=1
I don't know if this link will work, but I was hoping to share. It basically talks about holding on to worry too long and it becomes more than it needs to be. I went to my therapist yesterday and she said that in my job I am the business developer and that I look at the whole business and how all the parts fit and work together. She said I need to look at my life that way. Look at the whole picture, week, activities, commitments, energy envelope, diet, emotions and develop my life to balance it so that I can accomplish the things that are most important so that I can prevent the crashes.

I don't think the linked worked so I copied the content.

A psychologist walked around a room while teaching stress management to an audience. As she raised a glass of water, everyone expected they'd be asked the "half empty or half full" question. Instead, with a smile on her face, she inquired: "How heavy is this glass of water?"

Answers called out ranged from 8 oz. to 20 oz.

She replied, "The absolute weight doesn't matter. It depends on how long I hold it. If I hold it for a minute, it's not a problem. If I hold it for an hour, I'll have an ache in my arm. If I hold it for a day, my arm will feel numb and paralyzed. In each case, the weight of the glass doesn't change, but the longer I hold it, the heavier it becomes."

She continued, "The stresses and worries in life are like that glass of water. Think about them for a while and nothing happens. Think about them a bit longer and they begin to hurt. And if you think about them all day long, you will feel paralyzed incapable of doing anything."

Remember to put the glass down.

Love that, TammyDiane -
Ever since reading "How to be sick" my anxiety is so much less overwhelming. I read the chapter on letting go over and over. Now when I feel my mind going to the "what if" place, I literally say to myself "Drop it!" over and over until it's gone. It's so not worth adding to our already difficult lives with worry about things we cannot change.