very upsetting news.....I am NOT ok at all rt now

Discussion in 'Fibromyalgia Main Forum' started by AuntTammie, Aug 11, 2010.

  1. AuntTammie

    AuntTammie New Member

    My parents currently live about an hour away, which is just far enough that I barely see them, but at least I have still been able to see them some, and they have been able to help me a little with some things when I need help.....and though they still don't completely understand how sick I am, they do mostly get it.

    They have been wanting to move to a warmer climate for awhile, but I cannot tolerate the heat & it was looking like they were going to hang onto this house & buy a small one to spend winters away. Turns out they can't afford that & they sold their house & are moving to Florida in a couple of weeks. (I live in IL). They told me Monday they had to decide by today....I have not slept but a couple of hrs since Monday (& I normally sleep a lot).

    I am REALLY alone, have almost no one anymore, have spent the last 6 yrs losing one thing/person/ability/etc after the next, am barely managing to take care of the most basic needs, and now they are going to be too far away for me to see them. I can't travel, and I can never predict when I will be up for doing anything & even then it is very low key, for a very short time, and cannot be at my apt (bc my mom is allergic to my cat) realistically, if they were to come back to visit, even if they were here for a month (which is not likely), I might get to see them one time for a couple of hours & not be up for any more than is entirely possible that they could come back and only stay a week & I would not see them at all becasue of my health.

    Plus, my dad was helping some financially here & there - he couldn't afford to help a ton, but it was making the difference between barely getting by and not.....well, he ruptured some disks in his back and has some more that are bulging and he is way past retirement age anyway, so he is not going to be working anymore, so money is going to be even more tight for him. So, I don't think he will be able to help me anymore & I cannot live on my disability alone - 90% of that goes to housing costs & I am already living in the cheapest place around & really need to move, because it is making me sicker (mold, MCS issues, etc). I have been trying to figure out a better situation for the last 4 1/2 yrs, though with no luck.

    So, now I am feeling completely trapped in this apt, and very, very alone, and not sure how I will be able to keep taking care of myself (physically or financially), becasue my health just keeps getting depressed, nearly suicidal, and so exhausted, but can't sleep.......cannot deal with this.........trying to use my faith to hang on (& the fact that my pets need me), but am really not doing well. I know that I am blessed in that they do love me and they do mostly understand, but how does that help if they are so far away? Sorry if it sounds like I am overreacting or throwing a pity party or anything, but I truly cannot handle this.
  2. skeptik2

    skeptik2 Member

    This sounds just terrible for you! I don't know what to tell you, because I cannot imagine being in your situtation, but please, please hang on! I wish I could tell you to come to TX, as there are really cheap places to live here, still, but if you can't take the heat, it's no place to be unless you have A/C, even window units can suffice.

    Do you know ANYBODY you could share a place with? Know a church that could advise you? Call United Way hotline?

    So many of us here love you and care about you; please stay with us and let us see if we can help you out of this situation. Maybe look into N.C.,or S.C., where it's still fairly moderate weather, and it's a lot closer to FL?

    This stress is awful for you; can you let it go a little bit, and each day just do one thing to see if there's any of the above that can help you? I know your critter would love to be with you anywhere you go, but maybe letting the cat be adopted so your mom can be with you for longer periods of time might be the best option. Hard to choose between the two, that's up to you, of course.

    I think you're living in an expensive part of the country, and just further South has better options because the cost of living is lower. Have you looked into any subsidies you might be eligible for, are you a senior that can go into senior residency that is subsidized by the city or state? If so, call your local Area Council on Aging, or whatever it is called; they may be able to get you more resources.

    The shock of this move by your parents is understandable, but rest and take time to see if you can find a way to carry on. You're important to us here! We love you!

  3. mbofov

    mbofov Active Member

    This is one of the cruelest aspects of these DD - the isolation and financial insecurity. I know what you mean about losing one thing/person etc. after another.

    You know many people in hot areas survive by going from one a/c to another. They keep their homes cool, their cars have a/c, shops have a/c etc. So even though you don't tolerate heat well, I think it might be possible for you to live where it is hot. I think you need to sort out what is most important for you. It sounds from your post that the emotional and financial support from your parents is very very important to you (and understandably so!), so you might rethink Florida and not just dismiss it because of the heat. I think the heat can be dealt with.

    Would it even be possible for you to live with your parents? This would really ease your financial burden and maybe allow you to spend more money on improving your health. I know your mom is allergic to your cat. This may sound a little strange, but I'm familiar with a tapping technique which eliminates or reduces allergies. One of my sisters was very allergic to cats but when my parents died, she wanted to take their cat. Anyways there's a technique we used which takes about five minutes which greatly desensitized her. It probably needs to be redone every 6 months or so. So if you have any interest in learning about this, let me know and I'll pass it on. Of course it will be dismissed as woo, etc., but it really worked for her. It also worked on her for several food allergies she has.

    I think you need to look at all your options with an open mind.

    I'm really sorry you're in this position. These DD really are very cruel!

    Take care -

  4. TigerLilea

    TigerLilea Active Member

    I agree with Mary. I'm sure most homes in Florida have a/c. I would seriously consider moving to Florida along with your parents. You don't need to live in the same home, but could probably find somewhere that is close to where your parents will be living. Have your parents actually bought a house yet? If no, then possibly they might consider a house with a basement suite.
  5. simonedb

    simonedb Member

    hey Aunt Tammie
    sorry you are stressing on this, I would be worried as well if an important part of my support system was moving.
    I like the ideas to consider fla, I hate the heat as well but when I visited my bro in boca awhile back in the winter it was pleasant, and the summer there is a/c. Right now I am in midwest where we have both bad summers and winters, extremes, ideally I would like to go the west coast where its more moderate all year long to be less reliant on a/c and furnace, but it seems like most parts of the world/US have some weather downside one way or another ya have to accomodate in some way w/ CFS/Fm issues.

    Otherwise I would brainstorm on who you could reach out to in the community you are in if you want to stay. break things down into small steps and try not to panic. Sometimes i don't like any of my options though so I think I understand :(
  6. butterflydream

    butterflydream New Member

    i very much agree with the others for your situation AuntTammie.
    You do need your family nearby, search Florida low income housing.

    Illinois is financially Broke, many are leaving illinois, even ones with a decent income.
    Housing is ridiculious priced, renting or buying. Your living in a higher cost of living area in the state.

    No need to apologize, you are not throwing a pity party. Families today are in situations where they need to move in with another, and helping one another as many are struggling financially.

    Moving to Florida may be best in your situation.
    From what all you have described, without a doubt i'd be packing today.
    do your homework and search into Florida areas, thank goodness for computers.

    Big hug for you, you can do this. I wish you well processing all thoughts you need to begin a new journey. Time for a Change..
  7. hensue

    hensue New Member

    According to where you live in the area the cost of apts have gone down. My son's x has rented a big apt it would have been twice as much 4 years ago.

    The economy is really stressed in florida the homes are at a low low price in some areas.
    Well, most all areas have depreciated some. We have lots in Florida and we lost a lot of money on them. So economically this makes sense for them to move now. Especially if your parents could sell their home. [hard to do right now]. You should really consider moving to Florida everything is hot but air conditioning is everywhere. I could not live up North it kills my bones in the winter.

    I am really sorry you are having to go through all this. We are so desperate in this illness we cannot do things like we want.
    I promise you there is no where in Florida except at the beach that it is not air conditioning.

    Take Care
    [This Message was Edited on 08/12/2010]
  8. AuntTammie

    AuntTammie New Member

    thanks for all the replies.......very much appreciated

    .....moving to Fl is truly out for a bunch of reasons - the heat is by far the biggest one, but not the only reason (& yeah i realize there is air, and I am too sick to get out much at all anyway, but I do still get out some....the little bit I can get out and the very little bit of exercise - yeah I know bad word- I can still manage to do are the only things that keep me from being bed bound....on the days I don't do those things I literally cannot leave the bed or couch- & I would be stuck inside completely for 9 months of the yr there - spring and fall are still FAR too hot for me....until getting sick I was so much of an outdoor person, it would kill me to truly be stuck inside all the time, and it is not just uncomfortable when it's hot and humid - I cannot breathe at all - have asthma too - and I get a TON sicker and I often pass out ....and every time I have become sicker I have not improved back to the previous level of functioning, so the very strong likelihood is that I would get there & get even worse long term)

    anyway, there are other reasons, too, but I cannot stay online rt now to explain or to reply to each response ........ready to fall over from lack of sleep at this point and have been getting really sick being online for any length of time
  9. hensue

    hensue New Member

    Did not realize you had that to go along with fibro. You cannot breathe in this humidity and I do understand that. I dont even have asthma and today the humidity was horrible. If you can get out some for exercise I do understand. Sorry you are in this predicament I really understand the reasons now.

    Take care and we are here for you.
  10. matieofleaves803

    matieofleaves803 New Member

    Just a few suggestions --- I live in subsidized HUD housing. There you pay 1/3 of your income. I also have a medicaid provided Home Health Aide, provided thru Social Services.
    I've called on Volunteers of America several times. In Denver, the Domincan Sisters provide low to no cost housekeeping, shopping, etc.. United Way may have help, or various churches.
    I know it's hard to even think beyond your curent circumstances, but maybe when you settle a little, you can begin to take small steps.
    Maybe your father can help you look into help. Share the burden, so to speak.
    Hoping for the best for you!
  11. AuntTammie

    AuntTammie New Member

    hensue....thanks for your reply & for understanding (I actually have ME/CFS, FM, MCS, asthma, sciatica, myofacial pain syndrome, and several other issues that I am too tired to remember rt now - how crazy is that - I live with all this stuff & I can't remember it?!)

    matie - there is no HUD housing here - they aren't even taking people on the waiting list and have not been for quite a few yrs now (I keep checking) - otherwise that would help tremendously, and unfortunately apt costs have not gone down at all here.....mine stayed the same this yr and that's only bc I have been here so long - most apts in this area are actually still going up.....I think bc no one can afford a house anymore, apt complexes are getting away with murderous costs

    littlebluestem - still not sleeping......tried 2 kava kava, trazadone, and half a melotonin (even though my body really does not like melatonin, it usually does make me sleepy if I am really desperate)....normally any single one of those would knock me out, but I am so stressed and so over tired that even that combo didn't do it (I can't take valerian - makes me seriusly nauseated & I am already throwing up a lot lately)

    everyone else - I was going to try to get back to each of you, but I am still so wiped I just can't do it rt now, but thanks again for your reposnes

    this is going to sound negative, but it is reality based on how my body has responded throughout my illness:

    rt now I feel like either I stay here in the same apt and find some way to cont to squeak by financially while getting sicker from the mold, fragrance issues, laundry problems, etc, etc.........or...........I move and then either get sicker from dealing with the heat and humidity while still trying to get a little exercise, or get sicker there from being stuck inside all the time & unable to exercise - so either way involves getting worse bc both environments are really not good for me at all (also I just go completely nuts if I don't get outside a tiny bit, so the stress and depression from being stuck inside would really not help either)

    (like I said, I know it sounds weird that I still exercise when I am so sick, but if I don't do a little, I seriously am not able to function at all - I cannot stay awake but also cannot really sleep, so I just lie there and feel real sick (nausea, dizziness, etc get worse when I don't sleep enough) and literally do nothing, have a lot more pain and a lot more depression and cannot take care of myself at all & the OI gets worse, too....when I do a little exercise - stress the word little- , I definitely feel PEM, but I can sometimes manage to pace and take care of the very minimum stuff that needs to be done, and then rest with a book, and sleep better at night - unlike this week, normally I sleep a ton)

    I am just so scared of getting any worse, bc I will seriously be stuck in bed and unable to take care of myself at all
  12. mbofov

    mbofov Active Member

    Aunt Tammie - I know it doesn't look like you have any good choices right now, but at least as far as exercise is concerned, plenty of people do it indoors when the weather's too hot. There are exercise bikes and all kinds of other equipment out there where you can get a good workout. Lot of times you can get cheap used because people buy it with good intentions and then it becomes a clothes rack. Also there are wii machines which have great workout programs (my kids got me one which I haven't been able to use yet due to CFS, but I plan to).

    You could also drive to a gym.

    I think it might help if you had someone to talk to in person about all of this to help sort it out. Maybe your city or county has free/low cost counseling available.

    I know you feel overwhelmed and that can make it difficult to make a decision and it can help to talk to someone.

    Take care -

  13. simonedb

    simonedb Member

    hey aunt tammie, hope you do have some local support to figure it out.

    I know what you mean about the exercise though, walking is one of the only exercises I can do and it helps so much, but like you I can't do it when its too warm. Dr Cheney says it makes sense that some of us like to and can walk as with our heart issues he said that would be do-able and helpful if we felt we could do it, I have to be rested before I do it but its great and I get worse without it too. I am struggling though even in the midwest with walking in this heat, I have to wait til 9 or 10 at night as I cant walk in this heat in the sun and it still feels too warm late at night often in our heatwaves. I don't like the cold either but at least I can bundle up and usually walk anytime of day unless its like more than 10 below might now want to expose lungs. And you get "fresh air" being outside too that being cooped up inside constantly can expose us to constant indoor pollutants so thats the tricky thing about staying in all the time and trying to walk...and mall walking has lots of bad air with all the outgassing but its better than nothing I suppose but I hate malls. Maybe you could walk at night in fla if you were in a safe place, I see for ex its going down to the 70s in eve someplaces there which it isnt much better here at night in summer.

    Anyway, good luck figuring out where you want to be, I am considering my options too right now and its frustrating to try to deal with all the limitations this illness puts on ya.
  14. msgirl67

    msgirl67 New Member

    I am one of the newer posters on here and I am learning so much from each and every one of you. I am very sorry for what you are going through right now. I wanted to respond because I live in MS and it is very hot here. I work from home and I am at my house every minute of the day. Being in one place all day long is hard and puts a lot of mental strain on us not being able to get out much. My family lives on 10 acres and right before I started feeling really bad, I adopted a dog. I was taking her out and walking the entire circumfrence of the property and I can only take her out about twice a day now and just walk to the barn and back dripping with sweat and sob. I do feel however that I feel better mentaly for getting outside and love my puppy for being here to get me outside.

    I have been to Florida a few times, my father-n-law lives there. Have you seen the house where your parents are moving? A lot of the homes in Florida have pools with screen rooms and/or covered back porches. Maybe a pool would be an option to be outside in the heat for a little bit during the day or to be able to walk or do some stretches outside on the back porch with a fan. My husband bought me a small pool so that I can go out and soak in it every now and then when it's not too hot. I feel funny, but it feels good to at least be in the sun and let it soak into my bones.

    I feel that being around your parents would be most important to you for their support and then work on the rest of plan. Without support and the understanding of others, I feel like most of us would be doomed. Plus, Florida might be able to offer you more in the way of county and state programs. I am only trying to offer suggestions, please don't regard this post as me thinking I know what's best for you. I am blessed to be able to converse with all of you. I have seen others offer hugs....well, I am sending you big gigantic hugs....I hope that you can feel them.
  15. gapsych

    gapsych New Member

    This is a rough time for you. Yeah, like other times aren't, eh?

    I moved from Chicago about two years ago as I was on disability. A friend of mine who rents out one of her bedrooms had a vacancy and I lived there a year. This worked out but you have to keep in mind we were already friends and she knew my limitations.

    Chicago apartments are horribly expensive plus first/last months rent, security deposit, it all adds up. I am not sure where you live but I ended up moving downstate to my hometown and it has worked out nicely. I am closer to my family and friends. What I am paying in rent is less than what I was paying for a room, which was a very fair price.I live in a small duplex but it has a garage, washer/dryer, fireplace. I live in a University town but apartments have been overbuilt and there are lots of vacancies. I think this may be true for other college towns as well. Don't know about other towns.

    There is a referral agency in Chicago where you can be hooked up with people who rent rooms. The rentee pays a small fee, know their placement people well, so you know a bit more about the people you would be staying with. I can get you the name of this organization but may take a few days.

    I hope I have not repeated other's suggestions. I wish you the best and keep us updated.

    Take care.

    [This Message was Edited on 08/15/2010]
  16. simonedb

    simonedb Member

    oh I just want to add a disclaimer- I know some cfs folks can't walk at all depending on which type of cfs and what stage, trust me I am not a GET promoter. I think though for certain type of cfs it is good to try some sort of plan for conditioning. The one time I saw Cheney he just said that as far as the diastolic heart issue in cfs goes that walking would compliment it, something about how the heart pumps etc
  17. TigerLilea

    TigerLilea Active Member

    Hi Simone - Dr. Martin Pall believes that people with CFS who don't get any form of exercise stand absolutely no chance of ever getting better. No matter how bad I feel, even if all I do some days is walk around the house for a few minutes, I do it.
  18. ladybugmandy

    ladybugmandy Member

    if you would like to talk on the phone sometime, please let me know. even reaching out to people on the phone can help a little.

    and please do find out about the social services in your area. that is very important.

    on the off chance you do think about going to fla, remember that dr. klimas is there. she is a very good person to see.

  19. yellowbird

    yellowbird New Member

    Hi Tammie,

    How absolutely awful for you.

    All due respect to your parents, but are you not a tiny bit angry at them for doing this? Do they really have to move? They are leaving you, their child, in a terrible situation, and what for? So they can live somewhere *warmer*? Why? I would be absolutely furious if I were you. Do they realize how this is going to affect you? Do they not care if they see you at all?

    With regard to the amount of money your father may or may not be able to give you, why don't you have a talk with him about it and clear that up? Better you should know the true situation than stress about it, imagining.

    (Also, just to be nitpicky a bit, I don't agree that anyone is "blessed" to have their parents love and somewhat understand them... that's supposed to be par for the course!)

    Hoping things turn around for you soon,
  20. TigerLilea

    TigerLilea Active Member

    Just because we are sick with a chronic illness does not give us the right to expect our aging parents to put their lives on hold because of our health issues. They have worked hard all of their lives and they have the right to live out their retirement years as they want, and if that means moving somewhere warmer, then so be it. They have earned the right to do so. I'm sure it was a hard decision for Tammie's parents to make knowing her limitations due to CFS/FM. Here's a reality check; seniors move to warmer climates all the time because they find it harder tolerating colder climates as they age.

    Anytime we have someone who loves us and understands us, we are truly "blessed". That is something we shouldn't take for granted. You'd be surprised how many people don't have loving and understanding parents, relatives, or friends.