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Why don't people understand?
14 Replies
t3apps - September 25

I called my mom last week to check on her - she had a mild stroke in March and a major one in April of this year. She is doing exceptionally well - well enough to ask me when I'm going to go back to work full-time and "resume my life". I also had my annual review with my boss - actually, my old boss and my new one who took over a couple of weeks ago. They both told me that I looked "better than expected" and didn't seem to understand that just because I look OK, doesn't mean that I feel that way.
I have to acknowledge that my boss has been exceptionally supportive during the last year, when I had days that I could barely climb out of bed and sit in the recliner. She has let me telecommute nearly full-time, and has gone out of her way to find me projects that don't require a lot of analysis work but are more concrete, since I've been struggling with Fibro Fog nearly the entire year.
I have a couple of friends who have also been diagnosed with FMS, one of whom has been extremely helpful and supportive on my worst days. How can I explain to everyone that, even if I look nearly normal - the most common comment is that I'm either pale or flushed - I may not be having a good day? Or, that just because I look either the same or a bit better then yesterday, I may feel worse? Any suggestions are welcome - thanks in advance, Lisa

 

lucky13 - September 29

I don't have any suggestions, sorry. To me that's one of the biggest issues with having FMS. We look just fine, so people assume because we don't look sick we're not. Sounds like you have a good boss, that's great. I almost lost my job right before my diagnosises. But luckily when I didn't back down and quoted some ADA laws and verbage they backed off.

One story I like to help explain our pain to the "normals" is the spoon theory. It is how one friend described her Lupus to another friend. It so fits in with FMS to. Maybe check it out if you haven't read it yet.

 

t3apps - September 30

Where can I find the spoon theory? I'm looking at everything I can to help others understand. My boyfriend has been extremely supportive and tolerant when I change/cancel plans and most everyone at work has appeared to be supportive - it may be my imagination that I feel like they are complaining or less understanding when I'm not around. Thanks again, Lisa

 

lucky13 - October 16

just google "spoon theory" the website it's on should be "butyoudontlooksickDOTcom"

 

kvc33 - November 14

I have come to realize that almost everyone with a health condition looks fine, not just us. I am so used to people thinking that the two are connected that I now readily acknowledge that I look fine and tell them that people find it hard to believe I am sick when I look so good. I think part of it is their surprise when I tell them how sick I am when they didn't know. They say, "You look fine, you look fine." I think they have a hard time wrapping their heads around it. Sometimes they will then tell me that they have a minor health problem too and instead of being offended, I ask them about it and acknowledge their suffering. The truth is I don't know about their arthritis or diabetes or whatever until they tell me about it either. The difference with me is that I automatically believe them and don't tell them that they don't look sick. People who can see beyond appearances are simply more intelligent than those who can't and you really can't change a person's intellect.

 

Fantod - November 18

Pain is subjective. If you are not in a cast, it is hard for people to accept that you are in some sort of discomfort. And, many people think that medication will fix everything.

Fibromyalgia is recognised by the National Arthitis Foundation, the Centers for Disease Control and the World Health Organization. You should consider printing out some information about Fibromyalgia and giving it to your boss.

I'd also like to recommend a book called "Fibromyalgia for Dummies." Like all of the dummies series, it contains good, easy to understand information. Either send your mother her own copy or share yours with her once you have read it. The book has some pretty good suggestions on how to better manage this nasty syndrome. Knowledge is power.

Good luck and take care. Enjoy the upcoming holiday.

 

edwinsmoz - November 30

Ya I get tired of people saying how good I look when I feel like I'm a 90 year old man. My FMS has gotten better to the point I can work part time. I would have to give the credit to Cymbalta.

 

t3apps - November 30

I'm going back in to work a couple of days a week in December. We will see how it works out. Today was my first day back and I think I heard ten times "You look great," or "Your color is really good today." I'm very tired and achy, but I did make it through the whole 8.5 hr day. We will see how I am doing tomorrow and Friday! Thanks to everyone for the comments and support, Lisa

 

edwinsmoz - December 1

I'm glad you got through more than 8 hours of work. I wish I was that far along. I can go about 4 hours and I'm done. But I look good LOL.

 

t3apps - December 2

Well, after two straight full-time work days, one in the office and one telecommute, the third one fell flat and I only managed 2 hrs of telecommuting. I have to resume working or risk my job, but today I could barely get out of bed, and after two hours of very basic email stuff I went back to bed feeling like I had been run over by the commuter bus. Any suggestions on stretching my energy and getting further would be greatly appreciated.

 

Fantod - December 3

Have you considered trying Nuvigil? Google it. Some people with Fibromyalgia find that it is useful especially if you have to work. This is a prescription medication. Good luck and take care.

 

edwinsmoz - December 5

Getting more energy can be a hard thing to do because we have to first figure out what is causing your energy crisis. Part of it is pain, part of it is poor sleep and part can be a nutritional problem. So start with narrowing down what is causing the poor energy. I take a three prong approach and try to get a good regular sleep, better nutrition and sometimes I take a 5 hour energy drink, but do whatever it takes.

 

January - December 5

t3apps -- if you are having trouble after a few days of work, have you checked into getting on disability? You can only push your body for so long before it gives out.

 

t3apps - December 5

This is going to sound bad, but when I looked into disability back in June/July, I had already earned too much for the year to qualify, thanks to the leave I had accumulated in 20 years and to donated leave from coworkers. I think I can qualify for disability from work - they say you only have to be unable to perform at least one of the duties in your job description and I have many more - but it can take up to 7 months to get the paperwork through the system. I mentioned it to my doctor at my last visit and she wanted me to try going in before she would consider filling out the paperwork. I'm going to print it and take it with me next week when I go in for my next appointment, and we will see what she says now that I've seriously tried to go back into the office. I went in again today and by 4 hrs into the day, I was having trouble keeping my thoughts on track and participating in a meeting. Not to mention the aches & pains - it even hurt to take a shower this morning. If I haven't mentioned it - this disease sure takes a toll on quality of life.

Someone mentioned Cymbalta - I've been on 60mg/day since April. Does it help? Who knows. Is it making me worse? Don't know that either. We tried to go up to 90mg and I couldn't take the side effects after less than a week. I also take Ibuprofen during the day and Flexeril, Lortab, and either Trazadone or Ambien to help me get up to 4 hrs of sleep at a time. I've never been one to seek "better living through chemistry," but I can't seem to be human without them, to various degrees each day.

I've tried to improve my nutrition - I have been on a real fruit and vegetable kick for more than 6 months. I wish it was still Nectarine season! My fiance has been diagnosed as pre-diabetic, so we have really cut out processed sugars and flour to a great extent. I also try to take the dogs for a walk whenever I feel up to it, even if it is just around the block. Of course, having two large dogs (an 85 lb. English Labrador and a 130 lb. Black Russian Terrier) pulling on me is probably not helping but at least it gets me up out of the recliner.

Thanks to everyone for reading - just having an outlet helps my attitude, Lisa

 

Gram3 - January 23

Just joined your forum. Alot of what I've read is very useful.I also have
Lupus and other health issuses. Thank you for somewhere to talk to people that understand

 

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