Everyone is affected differently, right??

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

SassyMyKitty
Veteran Member


Date Joined Apr 2009
Total Posts : 673
   Posted 5/26/2009 3:11 PM (GMT -7)   
I went to see my mom today. And I was talking about getting on SSI, which, in the past, she has supported. But, today, she told me that I didn't want to spend the rest of my life on disability, and that she knew a lot of people with Fibro who work and do just fine. I felt a little angry. I mean, other people who can deal with this illness and work is great, but even the tiniest bit of housework puts me out. I feel like even though she is learning about the illness that she is expecting me to be like the other people she knows with Fibro. I feel like she thinks that I am using my illness as an excuse to be lazy. I wish I could work. I would love to work. But I can't. And any time I mention the possibility of me getting some kind of job to my husband, he tells me that he won't let me because he knows that when I would get home from work, I would collapse. When I had my last job, that is exactly what I did. I would get home from work, and usually, my husband would have to go and pick up our son from the babysitter because I would walk to the couch and collapse. Literally. I would crash out on the couch because I was so exhausted and in so much pain. I only worked 4 hours a day at max because it was a part-time job. That little bit of work made it so I couldn't help out much at home afterwards. Plus, I would have to rest BEFORE I went in to work so that I could actually do my job. But, then, I ended up calling in more and more because I just was so miserable that I couldn't funtion well enough to do my job.
Everyone is affected differently, aren't they? I mean, not everyone can cope well enough to be able to work. And those of us that do work usually have the same problems that I did when I had a job, don't they? Why doesn't some of my family understand this? My mom knows that I am in pain, but I feel like she thinks that I use it as an excuse to be lazy, and I don't. This just really upsets me. I need to know if there are others out there who deal with the same kind of thing that I do. I need to know that I am not alone. I need to know that everyone is affected by this illness differently.
All that I'm living for,
All that I'm dying for,
All that I can't ignore alone at night.
All that I'm wanted for,
Although I wanted more.
Lock the last open door, my ghosts are gaining on me.
-Evanescence "All that I'm living for"


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 5/26/2009 4:50 PM (GMT -7)   
Yes, everyone is different.  Isn't it irritating when people offer their 2 cents and you haven't even asked for it?  I know that my fatigue is worse than it was when I first developed fibro.  The pain is about the same, except during the rainy season here in Florida. 
 
When I was younger I was able to work a part-time job with fibro but I'm not sure if I could do it today.  My hearing impairment is the biggest obstacle for me.  I can't even be a receptionist because I can't hear on the phone.  Otherwise, I think I could handle a job like that.  But, just because I think I could do it doesn't me that you could do it.
 
Just look at the symptoms of fibro.  There are 57 symptoms.  I haven't heard of anyone having all 57.  We all are affected differently as to which of those symptoms affect us. 
 
So, you know what you can and cannot do.  Don't listen to others that don't have a clue what you are living with.  They haven't walked in  your shoes.
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


crazyoldcatlady
Regular Member


Date Joined May 2009
Total Posts : 194
   Posted 5/26/2009 4:50 PM (GMT -7)   
I'm sorry you're getting this flack from your Mom. It's good that your husband sees what working outside the home does to you and supports your staying home. I worked just 4 hours a day, 4 days a week and pretty much collapsed on the couch when I got home, like you. I often went to bed at 7:00 in the evening and slept 12 hours, and it still wasn't enough to get me through my 4-hour work day. I left my job in November. My husband agreed to that, but only for 6 months. He believes after a 6 month rest I should be able to go back to work again. Well my 6 months is about up and I just can't see it happening.

I was thinking about going to a temp agency. Maybe I can do short-term temp work, and I can work when I feel up to it and decline when I don't. I don't know. I would like to be a productive member of society, and I would also like to contribute some cash to the household. I don't know if I'm ready for disability.

And yes, I am sure it is different for everyone. And I think it is different for each of us over time. I worked with fibro for 20+ years. Full-time at first, then part-time for about 15 years. But now, it's different. Now, I don't feel that I am up to it.

My Mom worked in a dress factory with the horrendous pain of RA for many years. She was too proud to "take a handout from the governement" and couldn't afford to not bring in anything, so she worked. She forced herself and she was miserable. She pushed her body to its limits and she suffered terribly for it. We shouldn't have to do that to ourselves.

Anyway, I don't know if any of this helps you, but I do understand that the decision is a difficult one, and each person must decide for his/herself when the time is right.

hugs,
Donna

Heather H.
Veteran Member


Date Joined Mar 2005
Total Posts : 756
   Posted 5/26/2009 6:13 PM (GMT -7)   
I get what your feeling. I am in the same boat. The only difference for me is that my husband made me go file for SSI almost 2 years ago. I was denied the first time but the wonderful man that helped me fill out my SSI application told me that I would more than likely be denied the first time through. He also told me that I should file for a court appeal. That is what I am waiting on right now.
I do still work but in the last six months I have gone from working 15 hours a week to just 5 or 6 hours a week. I am down to 2 days a week and the pain is so bad that I just sit down and cry some days. When that happens, I usually fall asleep. I get so tired that there are days that I can't sit down at all cuz i don't want to take a nap. The only nap i get is waiting for my kids at the bus stop.
The SSI thing is something that you need to discuss with your doctor and your husband. Don't worry about what anyone else has to say. As long as your husband understands, that's all the support you will ever need. It took me a long time to get him to understand my pain and tiredness.

Heather
Love many, trust few, always paddle your own canoe!
 
dx's:  Fibro, 8th cranial nerve inflamation, MS.
 
meds.:  none at this time
 
 


Shash13
Regular Member


Date Joined Apr 2009
Total Posts : 179
   Posted 5/26/2009 10:13 PM (GMT -7)   
Hi Sassy! Yes, like the posts above, everyone is affected differently. I've been on SSI for a long time now. I still hate not being able to teach, but my fibro just wipes me out. I'm raising a grandchild, and that is getting more and more difficult -- but she's old enough now that she understands most of my problems. Bottom line: I echo the above posts -- you are the only one who knows how severe your symptoms are. Be honest with yourself -- take on only what you know you can, and try not to take on any guilt for what you can't do. It's not easy, but it can be done. In the meantime you can always come here to vent or share or whatever you need. We are here for you and we care.......
Luv ya
Shash
Dx: FMS,OA,depression,anxiety,DDD with 7 herniations so far,HTN,IBS,cardiac
stent,failing aortic valve,angina,migraines with aura,many surgeries,+misc.
Rx: Nifedipine,Atenolol,Enalapril,Simvastatin,Levothyroxine,Cymbalta,Bupropion,
Dicyclomine,Lorazepam,Darvocet,Percocet,albuteral inhaler,nitroglycerin,+
( novice with computer - patience, please!)


lost in philly
Regular Member


Date Joined Jan 2009
Total Posts : 243
   Posted 5/27/2009 6:14 AM (GMT -7)   
First of all, I really do hope (as someone who has had the misfortune of being both on welfare and now applying for SSD) that someday the social stigma changes regarding "lazy, not wanting to work..." this and that people on the system. It is practically a full time job to get on SSI/ SSD/ welfare! Its not for the lazy or faint of heart! It is testing every limit of my fibro fog just to stay organized, copy this, get this exam, fax this in time...omygosh, and we are lazy, really?!

How do you convey to others that you would do the most drastic of steps if you could keep just working and still maintain your house, bills, children--without the crippling pain and fatigue we get??? I lost half my life when I had to admit I couldnt work anymore. All my dreams for the future, severed. All my daily connections to friends, gone. All in one announcement, this is just too much. It didnt feel like, oooh Im getting away with something! I get to be lazy now. I LOST my dreams, everything I went to school for, a huge portion of who I viewed myself to be was no longer. I dont take that lightly and when people are flippant and think it is all about being lazy? Or my favorite, "I wish I could sit around all day.."

When I worked, I was the hardest working person I knew. Now I battle other people's views on a daily basis just b/c I need to take my health and healing first but you just cant focus too much on it. They dont know that you can hardly make ends meet on the money you get on those programs and they dont know the constant fear of throwing you off and the constant red tape that makes it anything BUT free money. They have no idea that they would never trade places with us in a million years.

Thanks for posting about this, as you can tell I got some feelings about it too! LOL Live the best life you can live, be grateful for your husband--you got a good one!!
lost in philly

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Fibromyalgia, Endometriosis, Migraines, Asthma, Chronic Fatigue

Savella, Topamax, Morphine, Percocet, Wellbutrin, Abilify, Crestor, Resoril, Loestrin, Imitrex

B12, Magnesium, Melatonin, Omega3
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

"Knowing without doing is like plowing without sowing."


SassyMyKitty
Veteran Member


Date Joined Apr 2009
Total Posts : 673
   Posted 5/27/2009 12:31 PM (GMT -7)   
I really appreciate all the replies and support. I am going through a ver difficult time right now. I found out today that my entire family may be dismissed from the doctor's office we have been going to for almost two years now because of something that happened with my husband that I don't really understand. I don't know what is going to happen. I am really worried. I have a doctor that I really like. He is understanding and really seems to understand and care about what I am going through. I don't know what will happen if I am moved to another office. Will I still be able to get the meds I need, especially my pain meds? I don't know what will happen. If I can't get the meds that I need, I know that I will end up in the hospital. I am so stressed right now, and so scared. I don't know what is going to happen. I keep crying because I don't know what is going on. I just want to stay at this office, with this doctor. He understands me, and he knows that I need all my meds in order to cope. He believes in my condition and cares. It is hard to find doctors like that, especially on medicaid. I don't know what is going to happen, but I could really use prayers here.
All that I'm living for,
All that I'm dying
for,
All that I can't ignore alone at night.
All that I'm wanted for,
Although I wanted more.
Lock the last open door, my ghosts are gaining on me.
-Evanescence "All that I'm living for"


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 5/27/2009 12:51 PM (GMT -7)   
I don't understand why your whole famile would be dismissed for something your husband supposedly did.  He might be dismissed but not you.  You haven't done anything wrong!  If I was that worried, I think I'd contact the doctor and speak with him personally.
 
Sherrine 
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


SassyMyKitty
Veteran Member


Date Joined Apr 2009
Total Posts : 673
   Posted 5/27/2009 3:04 PM (GMT -7)   
My husband contacted medicaid directly and asked them if an entire family could be dismissed just because of one person, and they told him that no, and entire family could not be dismissed. If my son and I are dismissed along with my husband, then we have a potential lawsuit on our hands. So, I should be able to see my doc for my next appointment, and if they tell me that I can't, then we are to call a certain number that the person gave us and file a complaint.
All that I'm living for,
All that I'm dying
for,
All that I can't ignore alone at night.
All that I'm wanted for,
Although I wanted more.
Lock the last open door, my ghosts are gaining on me.
-Evanescence "All that I'm living for"


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 5/27/2009 3:21 PM (GMT -7)   
Good for you!  I'm glad you checked that out.  I didn't think they could do that.  I hope you are feeling a little better and less stressed now.
 
Sherrine 
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


Heather H.
Veteran Member


Date Joined Mar 2005
Total Posts : 756
   Posted 5/28/2009 11:00 AM (GMT -7)   
That's some good news for ya!!! I am hoping that this is taking some stress off your mind. I don't think you need to worry about anything more. You have enough stress from the sounds of your posts so this should ease your mind at least a little...((((hugs)))))

Heather
Love many, trust few, always paddle your own canoe!
 
dx's:  Fibro, 8th cranial nerve inflamation, MS.
 
meds.:  none at this time
 
 


SassyMyKitty
Veteran Member


Date Joined Apr 2009
Total Posts : 673
   Posted 5/29/2009 7:12 AM (GMT -7)   
I really do have a lot of stressors in my life. I am switching doctors...I'm going back to one that I used to see years ago before I got on medicaid. She is really nice. I just pray that she will give me the meds that I need. I am going to get my medical records when I am switched over so that she can see what all has been going on. There are a lot of things I am stressed about, even though I try not to be. It is really hard not to be stressed. If you could all just pray that my hubby gets the job he is going to apply for later today, I would really appreciate it. Money is one of my huge stressors.
All that I'm living for,
All that I'm dying
for,
All that I can't ignore alone at night.
All that I'm wanted for,
Although I wanted more.
Lock the last open door, my ghosts are gaining on me.
-Evanescence "All that I'm living for"


Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 5/29/2009 8:15 AM (GMT -7)   
Yes, I think everyone is affected differently with fibro. My son has a woman on his fire department that has fibro and was an active firewoman til a year ago and now works in the office. If he and my DIL compare me to her than they don't get how I feel cause there is no way I could carry the gear around they have to wear that alone fight fires or work in the office as far as that goes. Fatigue has always been my biggest issue and even though the pain is getting worse all the time it is still the biggest issue most of the time. I know for some the pain is the biggest issue. It's hard enough trying to get people to understand fibro in general so trying to get them to understand the different degrees and problems with it is next to impossible. But you know what you can and can't do and it sounds like your DH knows too so don't worry about what others think, do what you can do. You know I do all I can do most days, I do give myself a free day sometimes everyone needs one, and that is all that matters to me. As long as I'm moving forward and feeling good about what I accomplish that is all that matters. My DH doesn't even have to ask how I feel cause it is like writing on a chalkboard everyday around here, if I'm up doing things he knows I'm having a good day and if I'm on the couch with heat he knows I'm having a bad day.
 
luv and hugs
Marlee
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
 
Co Q 10, Super B Complex, Extra B12, Multi vitamin


WhiteChocChip
Regular Member


Date Joined Jun 2009
Total Posts : 439
   Posted 6/3/2009 6:00 PM (GMT -7)   
Wow ... I can't believe your Mom of all people would be like that. My own Mom has Ankylosing Spondalitis, so she's very compassionate.

What irks me is when my neighbor tells me that I "should do something better than stay at home and be a wife." This came up when I told her I was going to quit working soon.

Until I can find a job with the flexibility I NEED, I can't work ... and besides, who said picking up after and taking care of a husband wasn't a job in itself!
New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, December 10, 2016 3:28 PM (GMT -7)
There are a total of 2,736,057 posts in 301,351 threads.
View Active Threads


Who's Online
This forum has 151448 registered members. Please welcome our newest member, Twingirldc.
273 Guest(s), 18 Registered Member(s) are currently online.  Details
NM12, Michael_T, mark34, Gear, astroman, summer16, Atomium7, Girlie, mpost, OldSalty, Twingirldc, Lynnwood, joavila92, Mustard Seed, bdavis, gilly2, lapilot, UCmas


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer