Encouragement needed---thank you in advance!

Discussion in 'Chit Chat' started by zenouchy, Apr 14, 2010.

  1. zenouchy

    zenouchy Member

    Hi all,

    Hope everyone is doing as well as possible today! Could use some encouragement to get over a hump. I have found myself in a weird, kind of "good-bad" situation that I would not have expected. I apologize in advance that this is kind of long. I have been feeling really great lately but can't figure out how to handle all the extra time on my hands. I still have my health challenges---it's still unpredictable, but I'm experiencing a noticeable energy improvement right now. I know this weather agrees with me (I usually have a tougher time here in the summer months of stifling heat), but I'm even better than last year at this time.

    At any rate, after being much more "sick" for years, it's like I've awakened from a coma or something, and it's like I'm mourning everything I've missed out on for so long. I'm so happy, yet so sad at the same time from so many things I've missed out on.

    I couldn't have kids, and it's too late now. I don't feel in sync with people my age because I don't work (definitely not able to right now), and I don't have kids. It's like I'm "lost in space", not feeling like I belong anywhere. Yes, I should take up hobbies or volunteer. I know that. It makes sense. I'm still so squeamish I think from trying so many things, namely volunteer activities in the past that didn't work out well because I couldn't commit to a specific day or time because my health was so unpredictable. I don't even know if I can do that now. I feel great for long stretches, but I still have unpredictable times of bad health; it's just that those stretches of good health are much longer now. Also, I still need to have downtime to "maintain" my health to ensure I feel good, and I need to have a very good night of sleep to function well the next day.

    Does this make any sense? I'm awakened to the fact that I feel great, but also even more awakened to the fact that I don't feel in sync with anyone else, in rhythm with the normal pace of life. I don't feel vital or productive sometimes b/c of this extra time; I do things around the house (chores, cook, exercise), but it doesn't feel very significant. People my age (40) are working, and/or raising families, and I'm not. My friends are also extremely busy due to the above, so I don't see them often at all. I feel really lonely. My DH works a ton too. It's tough to have all this extra time on my hands and not know what to do with it when I'm not quite at the phase of being able to commit to things yet. I know I still need plenty of flexibility. It's like "so close, yet so far away"... Very overwhelming, lonely and awkward right now, yet it's a great health improvement.

    Hope this makes sense. I still don't know what to say to anyone when they ask me what I do. I want to try volunteering at a day center for seniors (their website says they are very flexible in terms of days and hours to volunteer), but I'm scared I'm also going to be "burned" just like I've been at so many other places---people who said they were flexible, but then realized they just weren't. It hurts, and I felt rejected. I don't want the rejection yet again. Yikes, I'm just so overwhelmed and a bit scared I guess. I know I need to just try this volunteer opp and see how it goes. Not meant to be a long gripe session (this is a good problem to have in many ways), but it's kind of a strange situation and feels so new after five years of feeling differently. I like to solve problems, but I haven't gotten the help I've needed in the past after trying and trying and trying and trying some more!! I'm very persistent. It's tough to reach out to people and organizations so many times, and not get results b/c of our health stuff.

    Just need an encouraging push and to know others understand. We all go through so much here. Thanks so much everyone.

    Sending everyone lots of hugs and warm wishes for great health,

  2. victoria

    victoria New Member

    Haven't seen you around, because you're feeling better? I'm so glad for you - anything in particular you feel made the difference for you? I can totally relate, most of the time I've been like you - unpredictable.

    What about going to nursing homes or hospice home to visit those who have no one? I know there are many who have no one who comes to visit. Also - a bit more ambitious- maybe find out who has birthdays coming up in the next week and drop by with a card or balloon or a few flowers, or something along those lines, on the day that you can to see whomever.

    I don't think anyone that way would 'rely' on you to necessarily provide service/help at any certain time - but time spent visiting those who are alone probably would be welcomed by many. I think most in these situations would also relate to you, as well.

    I'm sure others will ahve some great ideas... that one sprung to mind after visiting a friend in hospice care; and also listening to my daughter's BF talk about being a cook at a nursing home - many residents there just wanted someone to talk to.

  3. stick2013

    stick2013 Member

    I just saw my therapist today, and she politely asked me to get my head out of my butt and do something. I asked her what???? She replied Letterboxing!!!!!

    I don't know if it's something that you would be interested in, but I will leave the link, and you can decide....

    I actually might give this a shot. Very little money involved, I can do it either alone or with a friend, get some exercise, be outside, and best of all, I would be doing something other than work, and home..........

    This might be just what you need to get out the door, and back into a bit of life.......
    [This Message was Edited on 04/14/2010]
  4. gapsych

    gapsych New Member

    I have just started reading this and it looks fascinating.

    BTW, How does a therapist tell you to get your head out of your butt, politely? I mean would you even be able to hear, since your ears would be covered? Tapping you on the shoulder first if you aren't in too deep?



    [This Message was Edited on 04/14/2010]
  5. zenouchy

    zenouchy Member

    Great to hear from both of you! I really appreciate your kind thoughts, ideas and encouragement. For some reason I'm so anxious and fearful about reaching out again and volunteering. Just because things didn't work out in the past doesn't mean it won't in the future. I need to try again, and you are both right, seniors really do appreciate our time and attention. They deserve it too.

    Victoria, I hope your health keeps improving. Jamin, I'm glad you are feeling well for the most part, but I'm sorry your arthritis is not behaving. I hope upping the thyroid med helps you.

    Victoria, several things helped me.

    1. Thanks to Jam, I learned I was deficient in Vitamin D, so I started supplementing and testing periodically to optimize my D levels. My energy level has increased a great deal due to that.
    2 . Early on in my fibro diagnosis, I tried the Guai Protocol. I was VERY skeptical in the beginning, but it worked tremendously well for me in reducing pain levels.
    3. I eat a very clean diet, low in sugar, high in fiber and tons of fruits and veggies. I also sneak in bittersweet chocolate (has those good antioxidants, so I don't feel guilty!).
    4. I did a sleep study and figured out my sleep issue the best I could....it's not perfect, but it's better. I really think sleep is a key component. If I don't sleep well, me energy levels go down dramatically.
    5. I exercise daily.
    6. If I fall off the wagon one day with my diet or exercise plan, I get right back on. The results aren't instantaneous with any of these things, but over time, it all helps quite a bit.

    I still have IBS issues, but they've improved. I also still have some I/C issues, but they have improved quite a bit too. To be honest, I don't know why. I am hoping this all lasts! I'm still sensitive to noise and odors. The weather has been great, and I know that's helping, along with less seasonal allergies. There's so many factors involved aren't there? I don't get along too well with our famous Texas "mega-heat", but maybe I'll adjust better this year.

    You both really helped; thank you so much! Talk to y'all again soon.

    Big hugs and feel good,

  6. Janalynn

    Janalynn New Member

    In a way I understand...

    I am not in your situation exactly..I didn't go from bedridden to close to there to feeling much better, but I've had swings. I also currently work (flexible hours). I deal with daily horrible pain. Somedays in my head I feel 'normal', it's my body that reminds me that I am not. It's a on going contradiction.

    When I have felt okay, which lately I've had a couple of unexplained good weeks of some good days (knock on wood) - I too don't know what to do. I'm almost afraid to do anything for fear.
    Even in my conversations with people, I'm afraid of sounding 'too good' on those days. VERY hard to explain.

    Find something you can do for YOU. Can you start a garden? Any other hobbies that you enjoy or have always wanted to do/try?
    If you like to work w/seniors, if where you are is anything like here, there are lots of memory care places that would love to have you just come in. They don't require specific hours. Come in and play games with them, visit, read to them, enjoy meal time, take them for walks.

    OMG, Stick, there was a huge article on Letterboxing in our paper this Sunday. I'd never heard of it before. Sounds like a ton of FUN! There are a lot of people/families that really enjoy that!
    This article focused on a family here that has been doing it together for a few years as a family activity. Kids were young, do it every Sunday.

    I'd encourage others to check it out!
  7. zenouchy

    zenouchy Member

    Thank you for responding to my post! The letterboxing website looks really interesting. I will read it in more depth when I have more time. It looks like something really fun to do when our weather is nice. It gets insanely hot here for several months in the summertime (coming soon), but it would be something interesting to look into for the next couple of weeks. I'll have to check and see if they do letterboxing in my neck of the woods. It's a really innovative idea. Thanks so much for telling me about it! Let me know if you do it and how you like it!

    Warm wishes,

  8. gapsych

    gapsych New Member

    I just broke the first clue to find the place for my first trip. Now I just have to figure out the clues once I get there.

    You can actually get badges for this. Since there are four boxes at this place, I could be 4/25 in a few days towards my first badge!!

  9. zenouchy

    zenouchy Member

    Sounds like you are really great at the letterboxing! Very neat. What does it mean to get a "badge"? Tell me more! Have fun! Erika :)
  10. zenouchy

    zenouchy Member

    Thank you so much for your warm and thoughtful response and encouragement. I think I understand what you are talking about re: your health situation. While of course ours hasn't been an identical scenario, I can relate, especially to that sense of sometimes feeling better and not wanting others to feel like they can count on me too much b/c I have no idea how long that will last. Our health is just SOOOO unpredictable! I hate feeling like I'm flaky, but I know it's not ME, it's my health.

    I'm so very sorry you have horrible daily pain and really hope it improves. You deserve those good weeks, which I hope turn into good months! I applaud you for working too. Can I ask you what you do for work? I haven't been able to work but would LOVE to if it's flexible and if I keep having this great energy! I was substitute teaching for awhile a few years ago....the flexibility of it was great, but then it got too exhausting. I looked into it again this spring, but our school district had too many subs.

    Thank you so much for your great ideas with the volunteering, hobbies (and maybe the work idea too!), and I hope you keep having those weeks have good health!

    Big hugs,

  11. fight4acure

    fight4acure Member

    I can relate to many thoughts and feelings you have as I'm in the same situation. I tell people I have FMS, and if they don't understand it I briefly explain it to them. I'm surprised to hear that more and more people know someone close to them who has this.

    Hang in there, and keep your chin up! Each day I pray and also look at stuff I am grateful for.

    Fight :)
  12. spacee

    spacee Member

    I love that you are feeling better. How great is that? But I do know exactly what you mean.
    What is there to do? It is a quandry and I am interested in reading ideas that people have.

    This isn't much but when I am at our computer I have QVC on mute. I feel like I know what
    is going on in the world and see the ppl helps.

    A book club at your library? That just popped in my head.

    I live in a rural town and really I don't see anyone I know. I think they are all in front
    of the tv!

    It is great to see your post but feel for you at the same time!

  13. skeptik2

    skeptik2 Member

    My first time here in months, and so glad to see you here and feeling so much

    My mother was in a nursing home: she was the most 'well' person there, but
    she had gentle mental issues that required specific meds dosing, and she
    needed to be there in order to get them in a timely manner.

    Anyway, a volunteer took her out to lunch every week, and then to the
    drug store or Sears for socks, underwear, a new blouse...whatever she
    felt she wanted. My mom came to love this woman like a daughter, and
    as I, her only daughter, lived 1700 miles away, i was so grateful to her
    for her devotion to my mom.

    My mom was very funny and a delight to be around, and when she died
    suddenly from an undiagnosed e.coli infection (they treated her for a
    bladder infection, which her quack dr. thought it was), the nursing staff
    was devastated. Mom had actually been the person chosen to be in
    the room(s) with the next patient who would probably die, because she
    had operated her own elderly care home (private), and she was good
    at being around the very frail elderly.

    Her memorial at the nursing home was attended by every single staff
    person and resident, and tears flowed. She was loved, and her
    volunteer "daughter" was praised by all my family for her loving
    attention to Mom.

    You could be that person we all valued so much....do try!

    Best and continued strength to you,

  14. zenouchy

    zenouchy Member

    Thank you all so much for your wonderful thoughts, ideas and encouragement. It's so comforting to have support on this board no matter how good or bad we are feeling---we just understand. I appreciate you all so much! Feel good everyone, and thank you again so much. Have a great "feel good" day!

    Big hugs to all,

  15. HeavenlyRN

    HeavenlyRN New Member

    Well, I agree with what everyone has said. After I read your initial post and before I ready any of the replies, I was going to suggest volunteering at a nursing home or through a hospice program. I'm a nurse and have worked in nursing homes and most recently as a hospice nurse.

    My suggestion would be to talk to the volunteer coordinator at one of those places and ask about a person who either has no family, or whose family lives far away. As someone else mentioned, doing shopping for the person, helping them write letters to friends or family, buying birthday cards that they can send to a relative.........things like that, are very much appreciated. Sitting with someone and going through a scrapbook is very meaningful. Even re-reading mail that they have gotten is important.

    In my role as a hospice nurse, we found it incredibly helpful to have a volunteer come and just hold the hand of a dying patient - if that's what the patient wanted. Sometimes we would ask a volunteer to come be with the patient until the family could arrive. Families were VERY thankful for that.

    I can understand your reluctance to get involved in too much, too soon. It is kind of scary. However, I think if you explain your situation to the person in charge of the volunteers, he or she would understand. And, you just have to be honest with yourself about how you are feeling on a day-to-day basis. If you feel like you're backsliding.......give yourself a day to recuperate.

    Good luck and keep us updated.
  16. Granniluvsu

    Granniluvsu Well-Known Member

    in getting into the conversation. Everyone is goiving you so many good ideas. Yes, the volunteer thing sounds like a wonderful idea. Take it slow and see how you do . Maybe after awhile you can do more things if all goes well. Or if you want to afterwards you might want to take on a part time job either with or without the volunteer work.

    Yes, take it slow, try not to overdue and let usknow how you are coming along.

    Gods bless you sweetie and GOOD LUCK in whatever you chose !

  17. zenouchy

    zenouchy Member

    Thank you all so much for your responses and encouragement. I really appreciate it.

    Last weekend, my husband drove with me to the elderly day center because I couldn't find it when I was driving around in the area last week. He couldn't find it either! We think it's been torn down. It's really strange.

    Now I'm suddenly swamped with some big, unexpected things to do! That's life isn't it? Hopefully things will settle down and I can volunteer soon.

    Thank you all so much again for your help!

    Big hugs to all,

  18. Puddleglum

    Puddleglum New Member


    Sorry you are in a yuck situation right now...
    I understand.
    I went misdiagnosed for yrs. I did not have CFS but Lupus and now just recently diagnosed with MS. So you can imagine my world has been turned upside down. Some days a sprinkle, but some days the rain comes down.

    I have tried to regroup with the recent diagnosis. What are the things you CAN still do?
    It might help to start from that point. Grieve what you have lost....I worked w/a good therapist and then start to look at all the possibilities you CAN still do!!

    Hang on!!