EVERYONE IS WELCOME HERE

Discussion in 'Homebound/Bedbound' started by Mikie, Apr 11, 2014.

  1. Mikie

    Mikie Moderator

    I know this forum was created for those who are bedbound or housebound to be able to comfort one another and share. There has been a feeling expressed that anyone who doesn't fit this description does not belong here. Our forums are not exclusive except from spammers. Many of us have been, at one time (including me), bedridden and/or housebound. Some of us experience this situation from time to time despite our usual struggle to carry on in the outside world with great difficulty. These people are our friends and brothers and sisters. Being rude is against the rules. Most of our members are generous and caring people and are very inclusive. Anyone can have a bad day but I ask anyone who has made others uncomfortable in coming here to please edit your posts or delete them. Sick people do not need stress, especially from those who should be more understanding.

    I also ask that our members report any rude posts. The identity of anyone who reports rudeness is not revealed and it allows us to remove offensive posts and warn the offending poster. Our purpose is to support each other so that we may help one another heal in a safe environment. Thank you all for your consideration.

    Love, Mikie
    Last edited: Nov 5, 2015
    bretzie, gb66 and rockgor like this.
  2. gb66

    gb66 Well-Known Member

    Mikie, Thank you for your help.

    The original posting for the Homebound/Bedbound board was posted in the Fibromyalgia and CFS/ME section on January 16, 2014.


    It says: "There is a new section titled Homebound/Bedbound now on the Friendship/Support Board. If you are homebound or bedbound or if you just feel lonely and need to vent, feel free to join in."

    This includes everyone, from any board, or anyone just readng the posts. All have always been welcome!

    If anyone left, please, come back! We need you. GB66
    Last edited: Nov 8, 2014
    bretzie likes this.
  3. Soul*

    Soul* Well-Known Member

    I hope if anyone ever feels my posts are experienced as excluding or rude, from my heart that either they or via the admin let me know. That is never my intention for sure but remarks like this make me feel that for all I know maybe I did something to offend someone.

    Mikie I fully agree with you but a post like this makes me and probably others too feel uncomfortable to post anything since it isn't clear to what post this refers to and if maybe it was me who said something that someone could have taken offence to. Last thing I want to do is be excluding and now I don't know if I was or wasn't. I am not able to walk trough all the posts I posted to see if maybe I said something that people could take offense to, I just know that that is never my intention.

    I don't know how this works for others but I would appreciate it that as a rule admin could message the person who it applies to if something like that occurs so that at least we know it isn't us if we didn't receive a message and if it IS us that at least we know what message was considered that way. Is that something that could be done?

    That would be very helpful. It's easy to be oversensitive when not feeling well and it helps to be specific instead of vague when pointing at something that could be improved upon. Thanks to all that admins do to keep this board a friendly place for all.
    Last edited: Apr 12, 2014
    bretzie likes this.
  4. gb66

    gb66 Well-Known Member

    Soul, I don't know what this is all about either. I have been off for a couple of days and it seems that someone made someone feel unwelcome. I didn't see the post so I don't know. Maybe Mikie can answer.

    I just want everyone to know that everyone is welcome to post, they don't have to be bedbound or homebound.

    I'm glad to see you. GB66
  5. Mikie

    Mikie Moderator

    Anyone who is concerned that he or she may have said something rude is likely not the offender (and I don't know who this person is). I didn't post this to make anyone uncomfortable or fearful. I can't go through all the posts either to see if one of them was rude. No one clicked on "Report" but the word came back that a remark made someone feel excluded and uncomfortable in "one of the posts." Well, as y'all can imagine, my trying to find the offending post would be like looking for a needle in a haystack. So, I decided just to post this to remind us that we are all welcome on all forums, whether we "fit" the forum category or not. We can all be a bit sensitive and feel offended when the other person never meant to offend as well.

    Our members are the best people I know. We post thousands of posts which never get anyone riled up. When I hear that someone had his or her feelings hurt, I feel compelled to just post a reminder. That's all this is so please relax. I'm not hunting anyone but I do ask that if someone reads an overtly offensive post, please just click on "Report" so I can check for myself. Otherwise, I can't help. My job is not to make anyone feel uncomfortable. On the contrary, my job is to ensure we all feel safe and comfortable.

    Love, Mikie
  6. Soul*

    Soul* Well-Known Member

    Thanks Mikie and we love you for it! It IS good to be reminded to be careful about the words we pick. To bad the people who felt excluded wheren't more specific. I am all to aware how easily written words can be misinterpreted so I never exclude myself when a warning like this goes out. Thanks for explaining.
  7. Mikie

    Mikie Moderator

    It is true that we cannot "hear" the tone of the written word and that can make all the difference in how it was intended and how it is received. It makes me feel good to see that everyone seems to want to ensure that everyone feels good about being here. That is what it's all about.

    I'm fierce when I go after spammers but the other side of my job is one done out of love for our members. Unless someone has been here since 2000, he or she does not know what I've been through and how much our loving and kind members helped me out. Almost everything which has allowed me to get out of bed most of the time is something I first heard about here, from our members.

    Even though I am mostly asymptomatic from my CFIDS, FMS, hypothyroidism, and Sjogren's, I still carry the mycoplasma bacterium and whatever Herpes-Family Virus, both or either of which can reactivate if I get run down. When that happens, I get pretty sick and am in bed for days. I can do days but the thing is that, even when one feels healed, one never knows when one can relapse. It's always on our minds. My heart goes out to everyone who is so sick and housebound and/or bedridden because I've been there. I pray everyday for all our Online Family here.

    Thanks to everyone who has made such an effort to reach out. BTW, I think this ongoing topic is so wonderful. It's as though we can visit one another to enjoy what lies outside. Just for the record, outside my sliders onto the lanai, is a pond where ducks, herons, anhingas, storks, otters and other critters abound. We have a lovely lighted fountain which is, at the moment, down for repairs. In Jan., our Cypress trees lost all their needles and are now sporting bright new green ones. Every year, the trees spread out with new "knees" in the water along the pond. I think some of the best fishing for the birds is between those knees. Just outside the window, is a pine tree where a falcon likes to eat his lunch. He is magnificent but watching him eat another critter isn't my cup of tea. There is something new to see every day but I just wanted to share this with y'all since I'm in the spirit.

    Again, thanks for all y'all do to share and comfort one another.

    Love, Mikie
    bretzie likes this.
  8. joanierav

    joanierav Member

    mikie, i love reading all your posts. you are always so interesting. im so glad you are feeling better. when i first met you i would run to the computer to read all your updates. that was some journey you had with those injections. but a very positive outcome. may it continue to be a positive one . bless you, joanie
  9. Mikie

    Mikie Moderator

    Thank you, Joanie! And, bless you too. Thank you also for your kind words to me. I'm glad if anything I've posted has helped anyone or even entertained to get one's mind off what ails us.

    Long before the injections, I was doing all kinds of treatments, each of which helped me get a little better but it wasn't until the injections that I became healed. I do believe that for anyone my age whose CFIDS/ME was first triggered in 1990, it is next to impossible to emerge 100 percent with glowing good health. As I mentioned, those chronic infections will be with me forever. The trick is to stay well to keep them latent. That said, however, I am still vulnerable to other things, like bladder infections and allergies. The shots are supposed to help the allergies too and they have but we had the worst allergy season here in ages.

    Another thing which hasn't healed is my sensory overload. Smelling laundry products can send me running from the aisle in the store. One time, it might not be bad but another time, it makes me sick. I still can't take someone touching me repeatedly, harsh lighting, shrill noises, and confusion. If I'm driving and several cars ahead all switch lanes at the same time, the panicky, jittery feeling starts. It's from seizure activity in my brain. I don't have seizures but there is enough low-level activity that it causes sensory overload. I have to take clonazepam (Klonopin) at bedtime so I can sleep through the night.

    My one doc says I've done better than his other patients because I've researched and done so many treatments. I think we should never, ever give up, even when we are bedbound. We are all different and respond differently to treatments but I think it is helpful, and gives hope, to know that someone, who was bedridden most of the time and on morphine for pain, has healed enough to live a somewhat functional life. I still tire easily and have to be careful to rest when I'm sick or run down.

    I hope and pray for every one of us that we can all live normally and happily. I pray for a cure. I do not see the injections as a cure (I almost never use the "C" word). But, they are the next best thing we have available to us. Unfortunately, insurance doesn't cover them and they are expensive. Also, it's difficult to find a doc who does this treatment. Hopefully, as more American Pharmas figure out the peptide puzzles, insurance will eventually cover this treatment. It is less expensive in the long run.

    Well, I got off on a tangent (I'm known to do this :) My love, hugs and prayers to everyone.

    Love, Mikie
  10. bretzie

    bretzie Member

    Mikie

    @Mikie Haven't been here in ages, but so :) glad you're "mostly asymptomatic from my CFIDS, FMS, hypothyroidism, and Sjogren's, I still carry the mycoplasma bacterium and whatever Herpes-Family Virus, both or either of which can reactivate if I get run down." Oh that is wonderful news.

    I'm still very weak, have reverse sleep and long to be asymptomatic as well. I have the Cpn bacterial mycoplasma and it really makes me have hope to hear that this can still be present and yet a person can be much much better re the CFIDS, etc.

    Can you tell me what you've taken that you think has made this possible. I was taking a bunch of things but nothing seemed to really help. Methyl B12 shots; Glutathione (w Methyl B12) shots; all sorts of supplements ... even worked long distance with a very good herbalist in CA, but nothing helped. AAARGH.

    Cheers!
    denise/bretzie
    Last edited: Jul 17, 2014
  11. gb66

    gb66 Well-Known Member

    Hi Bretzie, Welcome to the Homebound Board. I see that you have sleep reversal issues and I suffer from that too. It's very hard to live with.

    I started a thread about sleep issues today as I thought maybe some others are dealing with this and maybe we could share some ideas.

    I hope you enjoy this board and will join in on some of our "song games". Do you have CFS/FM too? That's the main problem I deal with, plus a few other issues. :) Good to meet you! GB
  12. Bluebird537

    Bluebird537 Member

    Greetings everyone.
    My mother has severe depression and is for the most part homebound. She only leaves the house to run errands like grocery shopping, paying the rent, etc (and only if someone is with her). She's had depression now for at least 6 years, and its been very frustrating, but it's been getting better. Helping someone with depression takes a lot of persistence and patience, but it does get better.
  13. gb66

    gb66 Well-Known Member

    Does she suffer from any other medical conditions? Sometimes being ill and/or in pain leads to depression because your life is so altered and limited.

    Is she taking antidepressants? I hope she feels better soon. It's hard being homebound for any reason. I can't go shopping anymore and really just leave home for medical appointments now. It is depressing sometimes and I'd love to be able to be more active. I miss being out in the world at times. Especially vacations and eating out! :) GB
  14. Bluebird537

    Bluebird537 Member

    Yes she's taking antidepressants and she's slowly getting better, but sometimes it seems like she's stuck in a rut. We don't go on family vacations anymore, and she doesn't like to go swimming with us. I think part of her problem is self-image issues, but I'm trying to get her out of that mind state. I've been working with her on exercise and eating healthy since she doesn't really leave the house. She's also found therapy in creating rubber band bracelets. I feel like it gives her a task, a purpose, and helps build her cognitive memory.
  15. gb66

    gb66 Well-Known Member

    Bluebird, It sounds as though you're doing a lot to help her. She's lucky to have such a caring daughter. Having a creative hobby is good too. I read a lot, and lately, I've been doing research on our family history on a genealogy board.

    I play a lot of games too. It really does help me. I've been eating a lot healthier since I developed diabetes and have lost a little weight too. Every pound helps! GB