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isolated and alone
11 Replies
mesosore - August 22

Sine diagnosis in 1987 I've struggled with the stigma of FM and the symptoms that back then they though were in my head. some doctors still do. I was divorced in 1980 and never could keep a real relationship as I always hid the FM and wound up just not being an active partner. So, I'm still single and since the kids are grown and live far away I don't get to have family around. No other family but the kids and no grandkids. It's hard for me to find and keep friends because they either work or are married and really can't relate to someone who is always tired and in pain. I don't talk about it with anyone and I don't want them to know because after all these years I'm ashamed of not being "healthy" You know the saying...she looks so good. Well, that's been the problem. Looking good and feeling lousey. I have problems falling asleep and staying asleep so I'm alway tired. Sleeping pills don't even work. I've tried everything from acupuncture,to hypnosis and everything inbetween. All meds including the latest which my doctor is always trying to get me to try. Antidepressents, all of them, make me depressed and I don't need that on top of the pain and sleepiness. Headaches are constant, expecially in the AM and the Florida heat and humidy in the summer keeps me indoors. It's really rough going outside when the heat index is over 100 every day. Low blood pressure makes me faint from the heat and I've had to quit volunteering at the animal shelter because it's not air conditioned. I keep thinking it would be great to have a partner but then again don't know how I would find one at this point in my life who would want someone with this condition. Wouldn't even know where to find him and I think I'm a good looking really kind lady. Slim and attractive seem to be in opposition to the symptoms of FM and most men think that I'm the athletic kind. How funny is that. Does anyone out there think having a man in my life would help or should I just look for lady friends? I am not a church person or a bar person so don't know how to find them. Any suggestions? Thanks for letting me ramble.
Kloey

 

Fantod - August 22

Kloey - How about joining a local reading club or discussion group? Some book stores have groups that meet regularly and/or have authors in to speak about their new book. No stress or huge effort required to do this. I've been to some myself and have found it entertaining. At least it gets me out of the house.

There are online dating sites for disabled people. Don't know if you would be open to trying that but nothing ventured, nothing gained. A friend of mine who is disabled dates actively. She meets her prospective dates in public places a few times - they drive separately and some one knows where she is going etc. She has Sjogrens and Fibromyalgia. I think it is all about attitude. If you have a positive outlook people will be naturally drawn to you. She is very open about her health problems and the fact that she has no hair and wears wigs. Doesn't seem to bother anyone she's met so far.

I think this is an opportunity for you to reinvent yourself. Look for activities that you can do and think about looking at a disabled dating site. But don't sell yourself short as there are still some nice people out there that would be happy to accept you as you are. Take care.

 

mesosore - August 22

thanks for the incouragement. I not only feel all the FM but I feel old. The two together are zapping all my spirit. I will try the book store and maybe a book club there. It's air conditioned and they have couches. Worth a try. I was volunteering at the animal shelter but it was hard work in a non air conditioned building and in Fl in the summer you can imagine the heat and humidity. Had to stop but would not give anyone the true reason. After all these years I'm still embarrassed to tell anyone. I guess I just don't even want to admit it to myself. Keep thinking as I get older it will all just go away someday. My diet is good, fruits veggies, very little meat, no fried foods, no soda ( well almost none) no drinking, smoking. Basically NONE is the answer to just about every question. I'm glad I found this site. At least I can read the posts and feel like I'm not alone. I've been fighting this for over 20 years and it's taking it's toll. The person I see in the mirror is not the person I see in my head.

 

Fantod - August 22

Kloey - I know exactly what you mean about feeling old. This syndrome is demoralizing and debilitating.

I am very open about my illness. I feel that I would rather have people know about the problem rather than have them speculate and reach an incorrect conclusion. I don't "wear" my illness but I think it is helpful for people around me to know. They understand me better especially when I am having a bad day.

I used to live in FL (Tampa)so I am fully aware of the heat and humidty problem. I am completely heat intolerant now so I can not imagine being in a warm climate. I am covered in sweat just sitting in a warm car until the air conditioning catches up.

I think that you are going to be just fine. I'm so glad that you liked my suggestion about a reading club. Maybe you'll make a new friend or two. I go to Borders to hear some authors speak. If it is one I really like, I'll buy a copy of the book and have it autographed.

I want to suggest that you try to be more honest about your illness and tell people. You don't have to tell them everything. Just say something like "I have a chronic pain condition which limits my activities." That is all that is necessary unless you get to know someone better and feel that you can be more open.

Have you considered talking to a counseler for some extra support and help? I have one and he is very helpful most of the time. If nothing else, I can really vent to him and blow off some of anxiety I have during a session rather than at home or to my friends. It makes me easier to be around.

And when was the last time you saw a rheumotologist about FMS? There have been a lot of new developments. I think a brand new doctor would be a good idea. A fresh set of eyes on a medical problem is usually very helpful. You could call your local hospital physician referral service and ask them for a recommendation to a rheumy and/or a pain specialist with an interest in FMS. Or you could go to the National Fibromyalgia Association website and register. Then you can see a list of healthcare professionals in your area.

I hope that my comments are helpful to you in some way. Enjoy your weekend!

 

mesosore - August 22

Thanks again. I wish I could tell you that I need a new doctor but I think I've been to just about everyone. I have been to a pain clinic where I'e had shots, injections between the vertebrea in the cervical area, shots in the neck muscles etc. Been to a Rummy but he was jailed for rape of a patient ( really) and there is only one other one in Ft Myers. I don't take meds very well. Terrible reaction to most. The last was Cymbalta where I developed severe stomach pains. Doc said keep taking it as it was probably not from that but after two weeks, not being able to eat and severe pain I wound up in the gastro office for ultra sound and endoscopy. Had gastritis from who knows what. Started after Cymbalts which I don't take anymore. Lyrica was awful side effects and don't even want to try anymore meds. Feel like a guinia pig so will stick to klonapin for sleep and thyroid meds because I need it. Taking an iron supplement because it's very low. Can't imagine I'm low in vitamin D as it's hard to get out of the sun around here. Wish I could move out of Florida and the extreme heat and humidity as I can't stand it anymore but just got my new assessment and my house just went down in value form $258 last year which was less than I paid for it to #189 this year but the RE taxes went up. It's impossible to sell a house in Ft Myers with all the unemployment and foreclosures. It's really bad and I'm sort of stuck here. If I could sell I would move an rent a condo somewhere up North and get away but it doesn't look like it's in the cards. I have been thinking of going to a shrink just to talk but need to find out if medicare will pay for it. It's amazing the amount I owe for the endoscopy and the biopsies they did that medicare did not pay for and I'm not old enough for secondary insurance which will, when eligible, cost me over $200 a month. Can't win. Will possibly have to look into turning my medicare into an HMO where I don't have to pay for secondary but from what I'm seeing there are few doctors around here that accept payment from those plans. Where do you live

 

Fantod - August 24

I'm in Michigan now. I can totally understand your problems with medication. I am pretty intolerant too. I treat all medication like poison until proven otherwise. It is very frustrating especially when the doctor thinks that the side effects you are having can not possibly be related to the med. My response is "I live here and I should know." I have to keep a running list on the computer so I don't miss anything that I am either taking or can not take. I just tried the latest and greatest for FMS - Savella. I had an "adverse reaction" and that would be putting it mildly. I was so disappointed as it helped with the very first dose. Past that point, it was a total disaster.
That was over a month ago and I am still fighting my way back from the side effects.

The economy here is realy bad. There are houses up for foreclosure everywhere. Lots of auctions and houses that have been started and then abandoned. When I left Florida, the house was on the market. It stood empty for 6 months until it sold. Nothing like carrying two house payments and utilities... I was really lucky to sell it in the first place so I should not complain. The FL market was bad when I moved there. I can only imagine what it is like now.

If you can find someone that takes Medicare, getting a counselor is a good idea. They are impartial and will help you get a better perspective on your situation. You probably even should try United Way or something like Catholic Social Services (you don't have to be Catholic) to see someone. Catholic Social Services here has counseling available. It is based on income and the fee can be quite nominal (like $10) per session. I think just feeling like you have a connection with someone would be a big help to you. And, having that appointment every week would give you something else to think about and even look forward to.

I hope you had a nice, relaxing weekend. Take care.

 

mimosette - August 24

Are you not a church person because of religious/non religious reasons,or is it just not your cup of tea ? I ask because there are so many non denominational churches now that have so many activities that really have nothing to do with religion! Just community based activities! Craft/art classes, potluck lunches during the week, scrapbooking sessions, even movie nights.
I have become obsessed with genealogy, I can easily spend all of my free time digging around the pc on ancestry dot com. on good days I go to the library or courthouse and look up old documents. In the winter I visit old graveyards.
I also volunteer at the local soup kitchen as the "chat person". I talk to the homeless/poor as they eat. They love the conversation, especially the isolated ones.
I teach, sitting down! a creative writing class of teen homeschoolers on Fridays.
There are many ways to get out if the house without sweating . I've had to find them, Alabama is pretty merciless year round, too. I find the longer I stay in, the more depressed I get.
Heck, go sit at the mall and make fun of teenagers! That's ALWAYS good for a few laughs!

 

louise75 - August 27

Isolation can be pretty tough, especially when you used to work and had hobbies FRIENDS: before you got sick.
My family chipped in and bought me a small electric scooter 2 yrs ago, I can now take the dog to the park where I have no problems meeting and talking to people. Still tough in the winter since I live up north! May try the book club thing. Plus there are times I am so sick I can't do anything!

 

wolffin - August 27

Im a hopeless romantic. I think theirs someone out there for everyone.

Your never a lone though I know sometimes it feels like it. I been there get there my self and even in a room full of people can feel alone.

But there is allays someone out there willing to care we just have to make sure we don't pass them up while avoiding everyone.

 

fibrosince92 - September 4

Hi Kloey, I KNOW exactly what your going thru...I went thru the stigma also, still am...I lived alone for 10 years and loved it...I was a bit lonely, but had my Rottie and kitty for company and did my best to function every day. It was hard to date cuz I hardly ever felt good enough to go anywhere..But I have met and dated many caring men, and am now with someone who has no problem with me having FM and when it is the right time for you to meet someone, the right one, you will. I promise! If ANYONE has a problem with you having FM, and wont take the time to get to know you, they are not worth YOUR precious time and energy!! In the meantime, try to do what you enjoy to get out and meet people. Or chat with others who have FM. Men have it too! Is there any support groups in your area? I moved from NY to AZ to help with the pain, and it DID help, but then I moved to Florida..so I understand about the weather...the humidity doesnt help with the pain either..I used to volunteer also, but I just cant do it anymore.. I've accepted it and others around me either understand what I am going thru or they dont. I stop letting it bother me..I have enough to deal with!! My Aunt actually thought I was lazy and enjoying myself sleeping all day and not working and was JEALOUS that I was on disability. She thought I was exaggerating about all my pain/problems. Until she was diagnosed also...Its NOTHING to be ashamed of...would you be ashamed if you were diagnosed with cancer? Of course not!!! I believe it is all part of Gods plan for us, so I do what I can and leave the rest to him. You sound like a wonderful person...you obviously enjoy animals...do you have a pet to keep you company? Walking my dog helped with the pain when I was up to it, but in the meantime I always have a fenced yard to play ball with him...The Fibromyalgia Network had an article about doing certain stretches to relieve headaches...its in the January 2009 issue..They also update us FMers on all the new meds coming out that may help..I wish you the best...and please dont be ashamed!! You didnt do anything wrong!!!

 

fibrosince92 - September 4

Hi again Kloey...I also read that you have medicare...if your on disability and have medicare, you should consider an Hmo or PPO. I have Evercare, which is part of Secure Horizons/United Health Care, and its for people with low/limited incomes..I dont know what I would do with out it. I have sooo many health problems, and just broke my hip,so if i didnt have them I would be screwed!! Of course, I have had problems finding drs that take it, but if I couldnt find one, my primary dr will get an authorization/gap exception for a dr who is out of network and the dr will be paid the same as if he was in network...I hope anything Ive said has helped. You shouldnt feel isolated and alone...no one should, as everyone has their own problems, whether they can be 'seen' or not. Good luck!

 

mesosore - September 16

Hi,
It's been a while since I've been on the site and just finished reading all the nice comments and suggestions. I am looking into secure horizons and first need to find out how many drs and hospitals in this florida area take it. There is a problem here with hmo's and ppo's . they all take medicare but I need to find a secondary insurance company come Dec when I officially turn 65. Still feel really old and alone. I don't think dating at this point is really an option. I don't go to church because I don't believe. I know that sounds terrible but it's true. I find organized religion to be so structured and critical. You see, I have two wonderful sons who are gay and church people seem to think that's a sin but they can be forgiven. Well, they don't need to be forgiven. They are both great people who have been wonderful contributors to society. One a medical doctor and the other owns an advertising agency and does lots of charity work. Funny how church and their structured beliefs tend to be critical instead of all accepting. I've been in a bad flareup lately and struggling to keep up my spirits and energy myself. Very little drugs. Just thyroid and a pain med now and then. I am very sensitive to all medication and the last one, Cymbalta, gave me such gastro problems I wound up with gastritis, and endoscopy and lots of bills. It was all caused by the meds so I stay away from them. I have just ordered the Chi Machine. I don't know if anyone has used it but it was featured on the Doctors last week and used by someone for two weeks that had fibro and she said it really helped relax her muscles. heck it has a two week money back guarantee so I feel it's worth a try. Again, thanks for all the support. I guess I need to be on this site more often.
Kloey

 

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