Life on the Bench

Discussion in 'Fibromyalgia Main Forum' started by TeaBisqit, Dec 4, 2009.

  1. TeaBisqit

    TeaBisqit Member

    Anyone else feel like they've been benched? Like we're forced to sit life out and just watch other people live. I can't stand it.

    Lately, I'm having a hard time following some people's blogs and twitter because they have full, healthy lives and I can't help but sit there and feel it should be me working that day or me out with friends having a great time for the weekend. It's painful to watch healthy people doing great, and I can't do anything. I'm not even well enough to volunteer for anything.

    The holidays suck when you're sick and alone. And alot of people really don't want you around anyway because your being sick sucks the joy out of their holiday. That's just the truth of it.

    I still have the Swine Flu in my left lung. It refuses to leave. So I'm still coughing after five weeks now and still spitting up tons of goo. Get a few hours of quasi relief and it starts again. I have no idea when it will go away. But it destroyed my Thanksgiving plans. I had to cancel and stay home because I was puking up the goo again. I spent ten days or more puking day and night from that. Finally went on the steroid inhaler and it stopped most of the puking. But it didn't clear this up. And then it stopped working at all, so I'm off that. I think I dropped one or two dress sizes from it. The ultimate diet, Swine Flu puke. :p

    So needless to say, the neverending Swine Flu and the holidays are beginning to seriously get me down. And it seems I'm the only lucky one in my entire apartment building to get Swine Flu. None of the them got it. They either had the shot or were too old to get this flu or were carriers. I think I caught it sitting next to someone in the lobby who had been in the hospital for surgery.

    So, on top of this, it's annual apartment inspection time in my building and I've been trying to clean, but it's like nearly impossible when you have CFIDS with Swine Flu on top. I think I'll pass it, but I really don't want them saying anything to me about anything. I just want to scream, you try and clean with being physically ill and see how well you do with no help. These inspections are a huge violation of civil rights. You should see the letter we got. They don't even give you a set day or time. They just say they will be in your apartment from this Tuesday thru Friday whether you are home or not. They will just use their key and come on in. And if you dare to refuse anything like this, they will just not renew your lease and throw you out.

    And before the inspection, we got a letter that maintainance would come on in and check things out. No day or time. So, on Wed, after I had just filled up a trash bag, trying to clean, I had to go to sleep awhile, and sure enough, the maint guy came on in while I was in bed. I don't mind this particular guy, but still, I was like, OMG, what if I was in the shower. They just come on in. And it wasn't all that clean in here when he did and he was telling me that they were coming next week, like I should be up and cleaning. Yeah, right.

    That's my life. That's the main bad thing about living in this place, the annual inspections. They mostly do it because they want to stay on top of anyone who is causing a bug problem by living really dirty, but I feel they take advantage and want to dictate how you live with no regard that some of us are just too physically ill to clean much.

    Life on the bench sux. When do we get to play the game?
  2. denis321

    denis321 New Member

    which is another reason I'm glad I'm not on Facebook and Twitter, including the fact that I just think they are inane to begin with unless you're a business trying to market your product or have huge extended family to keep up with.

    Could you strategically clean? There are some articles online about how to make a place LOOK clean without really cleaning that much. Could try doing a section a day? My own place is not that clean but I didn't have much furniture, have a recycle area right near the doorway for junkmail, run the dishwasher, and bring out the garbage occasionally. I put things back where I take them from. Otherwise, I don't follow any schedule for other chores. I don't think they're looking for Martha Stewart. It helps that I don't have kids/ pets.

    I know what you mean by the bench but whenever I feel that way, I talk myself out of it. There are lots of people who have issues other than CFS on the bench with us. And being on the bench now doesn't mean we'll always be there. Basically, I don't compare myself to others too much because it's not helpful for me at all.
  3. 3gs

    3gs New Member

    Hi Tea
    can I come and sit on the bench with you?

    You have hit the double whammy,poor dear. swine flu doesnt sound fun at all. gobs of goo. I know save it make a big gob ball and throw it at maint guy! or place on doorstep with a sign "Warning swine flu victum. Enter at own risk!!!!!!!!

    If possible I would be cking on this free entry thing. ACLU? this is outrageous,they dont know what they are walking in on. When I was on Housing it was once a year and more for inspection on apt. to make sure they were safe and kept up. What does your contract say?

    Please dont worry about if you are clean enough-you are ill. You have proof of this if they trie d anything.

    hopefully we get to play the game again soon.
  4. skeptik2

    skeptik2 Member

    Poor darling...I have Myasthenia Gravis on top of CFS, and it
    prevents me from clearing phlegm from my bronchials, but I started
    taking Guifensen, the blue tablets, 400mg, twice a day. It thins the
    gunk out and is a lot easier to bring up and out! Maybe it would
    help you.

    I don't think ANYONE should come into your apartment without
    knocking loudly several times, ringing the bell, etc., to make sure
    you are not at home...any man who walks into my place might
    be shot on sight! I think you have every right to complain about
    this, even threatening legal action if it happens again. Let them
    know you are happy they want things kept maintained and
    reasonably clean, but you will not tolerate being scared to death
    by a person entering without your knowledge.

    I hope you knock this flu out of your lungs and are consistently
    seeing the doctor about it!

    Hugs a many
  5. TeaBisqit

    TeaBisqit Member

    Muxinex is Guifensen with a cough suppressant added. It's not working on this anymore. I think it helped in the beginning, though.

    I went to a holistic site and they said all the things we would normally take to kill this don't work because of the whole cytokine storm thing. It has to be treated differently. And having CFIDS makes it a thousand times worse because we live with a cytokine storm with it most of the time. That's why it's lingering on me. I've started with high doses of vitamin C, which I think is helping. There's less of it going on. But it's still going on.

    I wish I could be a whistle blower on this place I'm in. But I'm stuck here with no place to go and most of my money is gone. I'd be dead if they didn't renew my lease. And believe me, if they want you out, they will have you out in thirty days. This is how they get away with it. Everyone in here is in the same situation financially. We can't afford to make waves. But what they are doing is completely illegal. You can't just say you are going into someone's apartment whether they like it or not, and at an undisclosed time and day of your chosing. And you can't dictate how someone lives or how much stuff they have or where they put their stuff. I can see if it's really a fire hazard or a bug hazard, but beyond that, leave people be. If they are quiet and paying their rent on time, there is no reason to harass anyone. But these inspections are just so illegal. It's a violaton of civil rights and privacy. And they get away with it.

    I'm still trying to avoid an antibiotic, but I might have to go for one. Maybe it would clear this up faster, I don't know. I'm so sick of having it.
  6. onset1990

    onset1990 Member

    so many times on the web lately. The same symptoms and the same: Mucinex doesn't work etc. This thing must be one heck of an evasive bug! My therapist had the lung thing so bad she couldn't stop coughing to talk. I asked her if she had swine flu and they wouldnt test her or her son. People online all over the world are reporting the same abnormal level of congestion.

    I had a "lung thing" all summer. I never knew what. But I had a really wet, crackling left lung (after a bug) from June until October. It's still a little croupy some nights or mornings but nothing like before. I thought about having a chest xray but my Dr said let's wait. Vitamin C and 10-12 hours of sleep a night (not counting the early morning insomnia) was the only thing that helped me.

    My therapist ended up going on an antibiotic. I don't do well with them and mine wasn't bacterial, just viral, I think.

    About being benched... I didn't think when I had to retire from full time work that I'd be benched but that's what happened. I had to realize I can't go back to work. It's hard to watch TV (I watch a lot of TV) without feeling like you're missing out on everything but I bet even those people we think are getting what we wish we had? aren't getting everything they want either. Or maybe I've been in therapy too long becaus ethe whole world seems dissatisfied sometimes.

    Can you put a note on your door that says "Ring bell before entering"? That isn't legal in California (landlord entry without consent). Besides, that doesn't feel safe to me to have a man enter my home unless I let them in. I'd have a panic attack!
  7. AuntTammie

    AuntTammie New Member

    {{{{{hugs}}}}} too wiped to write much rt now, but wanted to let you know I so totally understand what you mean about the holidays and being alone.....I was alone for Thanksgiving, will be alone for XMas, New Years, my b-day (in Jan) and Valentine's Day unless something changes, and it SUCKS!

    also I hope that you get over the flu - I know that does not help things at all
  8. TeaBisqit

    TeaBisqit Member

    The left lung is Swine Flu. Anyone with a left lung thing this year, it's Swine Flu. For some reason it likes the left lung.

    I spit up another half a box of tissues worth of goo again. I am so sick of having it. I just want to cry. I get some hours where I don't have it and then it comes right back. Horrible.

    Tomorrow is the exterminator. He never cares how the place is as long as it's not excessively messy. Then, from Tuesday on through Friday, I have no idea if they are coming on in or what. I hate it.

    I also have to call maint in the morning. The heat isn't working right in here. I froze all weekend. And they still haven't fixed the no hot water or my shower drain. You have to keep at them or they take a hundred years.

    I just have this overwhelming sadness and just want to cry. Everything really, the health, being alone, the plumbing problems, and my main pc is still in the shop for repairs after a month cause they had a problem ordering the adapter to fix it, so they reordered it and I still don't have it back yet. My relatives have left me for dead. I'm sure they saw the reports on XMRV, but they will never admit they were wrong and we are physically ill. I'm sad over the whole XMRV thing because we still don't know a hundred percent if this is THE one. And I want it to be. I want the validation.

    I just wish things would get better for all of us who are suffering. It always seems like I say next year will be better and it never is. In some small ways, but not in big ways.

    I also still peeked in on some of the Twitters that are depressing me. I love those people, really I do. But it's so painful that they have great, blessed, healthy, full lives and I can't even leave my apartment most of the time. :( They have fun, successful jobs, too. And one of them recently had a baby. And I can't have kids, so that sux, too. I just feel like I'm in this awful hell dimension where I've been forced to lose everything and forced to watch other people live. And no one is telling me what I did that was so horrible to deserve a living death sentence. If you are going to give a punishment this harsh, you should let someone know why at the very least. This is an extremely cruel punishment.
  9. FibroFay

    FibroFay New Member

    You didn't do anything to deserve this illness. None of us did anything to deserve it. If we are being punished, then I have to believe the little 4 yr. old girl in my community who recently died of a brain tumor was being punished. Do you think she deserved it?

    I'm concerned about your depression. Are you taking something for it? A good antidepressant can help you see things more positively.

    I live in low-income housing. We have the dreaded inspections every year too. It said in the lease that I signed that they will be inspecting each year. I try and prepare all year for them. I don't allow for clutter. I keep trash from piling up. I don't have children or pets so that makes it easier. I cannot do my heavy cleaning, and for the past year and a half I've had to have someone come in and do it for me. If you are on Medicare/Medicaid you should qualify to have someone come in and clean without your having to pay for it. Maybe help you with meals too.

    I look at the inspections this way. They are for everyone's good. I don't like being inspected, but I'm sure glad they are inspecting my neighbors!

    I'm in PA. Here the landlord must give 24 hrs. notice before they come into my apartment. But, if I call for maintenance, then they can come in whenever they want. My call is their permission to enter.

    I agree with one of the above posters. What if a maintenance man or landlord walked in unannounced and got shot! These days one might shoot first and ask questions later!

    Tea, I wish I could help you. I do care.

  10. denis321

    denis321 New Member

    Re: the entering without notification and not having hot water, heat

    My relatives own several apartment properties so I'm aware of rental rules from them. You should google for "tenant rights" in your state or call your local Section 8 office if this is the program you get housing through.

    It is illegal generally for a landlord to enter your place without your permission (the time needed for prior notification can vary from state to state). Certain essential things like heating and hot water have to be addressed within 24 hours more or less. If your place is covered by a program like Section 8, they also have specific rules for the landlords who participate in this program.

    I know you don't have the energy/ health to do it but it might benefit you to check out the group Nolo on the web. They have law books written for lay people and there are a few concerning tenant's rights. Ask your local library also. Many libraries have digital books online or have programs for homebound folks where they will have someone drop off or mail you the books you want.
  11. TeaBisqit

    TeaBisqit Member

    It's low income housing. What they do is give you a letter that states they will be in your apartment from now until Xmas anytime they feel like and "You should consider this 48 or 24 hours advanced notice". There is no asking if we agree to it. We are flat out told that this is it. And they will be in whenever it suits them. No set date or time. I think that's still illegal. They are giving themselves several weeks of time to come on in whenever.

    The maint guy showed up today after I called them again and said the heat kept shutting itself off. But of course, he was in here when it happened to be on again, so he probably thought I was nuts. He made a small adjustment to the thermostat. I still froze after he left, but it's not too bad in here right now. He fixed my shower drain. And he said he made an adjustment for the hot water, but it's still freezing cold. I'm going to have to call about the hot water again tomorrow. Unfortunately, that usually takes him a few tries to get it right. He said there are switches in the basement and he has to becareful not to make someone's hot water too hot. I went through this in March. I had to keep bugging them for over three weeks till it got fixed right. It's worse than ever right now. You turn it on, it's ice cold. You have to wait a full five minutes or so till it starts to warm up, but it doesn't get past warm. There is no hot. And then after another few minutes, it gets cold again. I've been having to wash my dishes in cold water and to get a hot shower, it seems to get hot if you turn on the kitchen faucet, and the bathroom faucet while having the shower running. So you have to run everything just to get a hot shower, which is nuts. They have to fix it.

  12. slammed

    slammed Member

    do you have access to a health food store?

    there is an extract called OSHA root, in a glass bottle(1 fl oz) , that is great vs congestion. about half a dropper-full in a 6oz glass of water, try 2x/day. i notice a drop off in effectiveness if used too often, so maybe 3 days on, then a couple days off ... see how it goes. you'll get used to the taste! lol actually, it's not too bad.

    do you have a chain-stop inside your door? at least, you could make sure nobody comes in when you are there, if the chain is connected. it would be better if nobody gets shot. i'm thinking that would be a huge trauma for you. big stress/ not good

    if you try the OSHA, let me know how it works for you. i have used it as needed for years.
  13. TeaBisqit

    TeaBisqit Member

    Due to it being a disabled building, they don't allow chains on doors or even locks on the bathroom or bedroom doors because they feel if you are too ill to get up, the ambulance attendants need to be able to get to you. It's understandable, but it sux for privacy if they come on in using their key.

    The problem with this flu is, you produce way too much mucus. But drying it up just gives you a dry cough. There is no way to win. I still almost puked again today from it. At the moment, it's leaving me be, but it does that. You think you are getting better and then a few hours later, bang, and then you end up spitting up or coughing up for hours. I haven't been able to get warm all day and I think my spleen hurts. I cannot get rid of this flu. I hope this isn't going to be a long deal. The last time I had a flu, back in the stone ages, I was down for four months with it. Bad immune system from CFIDS/ME, makes stuff linger.
  14. isiselixir

    isiselixir New Member

    Tea ~

    I really relate to you. I'm sick of living on the sidelines. I'm sick of escaping the non-life via movies, books, and the internet. I want a real life again - I was to dance and swim and have a career and date again. I feel like this is some sort of cruelty, a twisted fate we all don't deserve. It makes you wonder though, sometimes, with the "why me?" How can you not feel that way at times. All I can say is if you need a friend or penpal who is in the same boat, I am here. Befriending others who have what we have is such a relief amid the harsh reality of our bane with CFS.

    ~ Rachel
  15. TeaBisqit

    TeaBisqit Member

    Just read your profile. Martial Arts and Tarot :D I was into women's body building and tarot before I got sick. I miss the gym. I had a friend with our illness who was a martial arts kickboxing champion with tons of awards from it. After he got sick, that was it, he couldn't do it anymore.

    Yeah, that's my life, too. The net, movies, anything you can do from the couch. I want a real life again. Even half a life again.
  16. AuntTammie

    AuntTammie New Member

    Hulu was just bought out and they are considering charging for watching TV and movies online.....I never thought I'd see the day when I would find something like this upsetting bc I never used to watch much TV, but now I am freaking many days, TV is about the only thing I can handle and I cannot afford cable (and at my apt no cable = no reception no matter what)....if TV and online movies start charging cable rates (& that's what they are talking about), then I will have a lot of days where there is literally nothing I can do

    believe me I have thought and tried all sorts of other things to do that do not take much energy and still there are days when none of those things are possible, whether due to brain fog, lack of concentration, inability to do stuff while laying down, trouble with spending much time reading things online and writing online (I literally get nauseous, dizzy, headaches, etc from the computer screen when I am reading, writing on it too long, but somethign about how dark it is when watching TV seems to make TV viewing on here ok).....etc.... so anyway, there are truly days when TV is about the only option and if that is taken away due to costs I am going to really lose it - I cannot deal with just laying down and feeling lousy and having no distractions at all - that would seriously kill me

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