How do you make some one understand this ?

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littlemama33
Regular Member


Date Joined Oct 2011
Total Posts : 54
   Posted 9/18/2015 10:57 AM (GMT -6)   
I have had this for about 5 years now. Good days ..bad days. Cant hardly walk sometime from weakness or muscles tightening, feeling deeply ill, or jusr slightly. Looking okay and then looking pretty bad. Hard to visit and other times its easy. Because of this crap, even our closest people dont get it. They see u good somedays n then think u are well or just not that sick. But it stays. The depression for me comes from people wanting me to be ok. Wanting me to cook and clean and do lots of things which I have to try say no to. It would be too much. It hurts that they dont get it. It hurts that I dont even get it. How in the world do you get someone to understand you are really ill even when you look ok.?? I need backing and my family seems more irritated if I try to
get them to see. They all blame each other and
then dont see it themselves. Anyone have any words of wisdom here.? I have tried having family read sites on it but they still dont get it? What are you doing in way of getting understanding? What am i doing wrong?

Post Edited (littlemama33) : 9/18/2015 1:13:00 PM (GMT-6)


jkn913
Regular Member


Date Joined Nov 2013
Total Posts : 167
   Posted 9/19/2015 7:15 AM (GMT -6)   
littlemama33, you are not doing anything wrong. This disease is just plain awful. Not only because of how it destroys our lives, but how there is no medical criteria that says "we are sick". I have told my husband before that having cancer would be preferable to having this, because with cancer people understand and we know that eventually, one way or another, it will come to an end.

For me it is a little different. My family knew me well before I got sick. I became this way after getting bit by a mosquito and getting West Nile. Several years latter I was still dealing with it and it was actually my husband that tied all these weird ME/CFS symptoms back to the West Nile.

Having said that, even though my family sees the difference, I know it is still hard for them to "get it". My husband is the worst. He is always telling me to exercise. I don't know how many times I have tried to explain about Post Exertional Malaise, but he keeps it up to the point that it really pisses me off.

One of my daughters got the flu a couple weeks ago and was feeling really bad. I just told her that that is exactly like how I feel most the time. She told me she was thinking of that and was wondering if that was how I felt. It was good to catch it in the moment.

The thing is, they will never really 'get it', and to be honest, I wouldn't understand either if I wasn't living it. If you could just get them to accept, (that is the key, they won't understand but they can accept it), that you aren't the same, you would like to be, as this is much harder on you than them, but that you aren't. This disease totally sucks, you know it and you hate it. So if they could just be patient with you, you would much appreciate it.

I know this wasn't the magic bullet answer, but I hope it helps.


littlemama33
Regular Member


Date Joined Oct 2011
Total Posts : 54
   Posted 9/19/2015 10:20 AM (GMT -6)   
Thank you...thank you for sharing with me. That alone helps. I appreciate it. You are right, they really cant get it. I will work on the understanding somewhat. I think my husband thinks I can somehow make it better if I did more. I hate to see the disappointment on his face when I have to say no or disbelief when I am not up to making a meal. I feel better just having someone else get it. Thank you!!!
I meant to add that mine came after a bout with pneumonia n a separation, not sure which may have started it? It is a crazy disease...making people wonder if u are sick or lazy. Would love a few normal days with no payback...what I wouldnt do!!! On a good note, I still have lots of blessings to count. Today...u were one.

Post Edited (littlemama33) : 9/19/2015 12:11:37 PM (GMT-6)


jkn913
Regular Member


Date Joined Nov 2013
Total Posts : 167
   Posted 9/20/2015 9:09 PM (GMT -6)   
Glad it helped. This is a lonely disease. I feel isolated often, even though I am around others, there is so much I keep to myself.

I hope you are doing better. Keep in touch.

littlemama33
Regular Member


Date Joined Oct 2011
Total Posts : 54
   Posted 11/15/2015 1:11 PM (GMT -6)   
I have read a little on it. Pls...tell me ur problems and what this did for u? What is the cost..how often...what do they do? Thanks!

littlemama33
Regular Member


Date Joined Oct 2011
Total Posts : 54
   Posted 11/16/2015 9:14 AM (GMT -6)   
Thanks for answering!! Glad you are better! Will check this out soon.:)

nategerdney
Regular Member


Date Joined Jul 2014
Total Posts : 77
   Posted 11/16/2015 11:21 AM (GMT -6)   
I've been through medical Hell since I was born 30 years ago, but I don't have this, and to be honest, I can't pretend to feel what it may be like. There is no real 'making people get it' if they haven't been through it themselves. It's just too outside of their experience - and people may be more sympathetic to cancer, but I doubt they get that, either. How much it destroys your identity. Unfortunately, no-one around you, who should be your support, understanding it makes it much harder to put up any kind of a fight.

littlemama33
Regular Member


Date Joined Oct 2011
Total Posts : 54
   Posted 11/16/2015 1:45 PM (GMT -6)   
I am really starting to understand this. It's true n as I said...I don't even get it so how could they. I just want to do my job, not be a job for someone close to me. It's that looking well sometimes that throws people off. Thanks for taking time to write me. I really appreciate it!!! I hope u are finding help for you on here.
Sherry

fibro, chronic fatigue, rls, ibs, depression, insomnia, and celiac.

nategerdney
Regular Member


Date Joined Jul 2014
Total Posts : 77
   Posted 11/16/2015 4:46 PM (GMT -6)   
littlemama33 said...
I am really starting to understand this. It's true n as I said...I don't even get it so how could they. I just want to do my job, not be a job for someone close to me. It's that looking well sometimes that throws people off. Thanks for taking time to write me. I really appreciate it!!! I hope u are finding help for you on here.


I know. It's awful to be slowed down and feeling like crap, and it's devastating to feel like you are a burden. You're right, that when you look well, other people believe you're getting better. A few weeks ago, I attended a huge family gathering and I did my best to appear to be doing okay, for them, and it worked too well. They think I'm okay when I'm not, and I wish I had an answer for this. One really rough thing is, when you try to tell them you're still not okay, it can easily come off as you wanting to stay that way, even though no-one actually wants to be hindered in life.

I find a few people helpful around here, others not, and some just trying to be understanding. Finding solutions is hard, and going through with them can be even harder.

littlemama33
Regular Member


Date Joined Oct 2011
Total Posts : 54
   Posted 11/16/2015 6:07 PM (GMT -6)   
You nailed it....said my words. Thankyou. Exactly!!!!
Sherry

fibro, chronic fatigue, rls, ibs, depression, insomnia, and celiac.

DianeB
Veteran Member


Date Joined May 2013
Total Posts : 1340
   Posted 11/25/2015 5:49 PM (GMT -6)   
Nategerdney

Yes - you captured the dilemma we face when we make the effort to appear 'normal'.

When I could not tolerate one more 'you can feel better if you want to' comment, I went on a short, rare, rant
re: the disrespect of calling me a liar.

(I am usually on the chronic pain & fibro forums
however the chronic fatigue affects my life everyday so often wander thru here too.)
Herniated cervical discs & other disc / spine issues, Arthritis, spurs
Injuries &/or pain to/in shoulders, elbows, wrists, knees, legs, ankles
Fibro / myofascial pain, neuralgia, neuritis

cilly
Veteran Member


Date Joined Aug 2014
Total Posts : 1345
   Posted 11/30/2015 12:07 AM (GMT -6)   
It's extremely sad and disappointing to have to explain to family and friends.
Ppl never understand CFS/fibro and I feel frustrated with myself on several occasions .
I cannot attend events and ppl get upset.
You just understand and write it so well.

Thank you for validating how I feel.

Sickfor5years
New Member


Date Joined Dec 2015
Total Posts : 1
   Posted 12/5/2015 5:41 PM (GMT -6)   
Hey there everyone. My name is Tobin and I spent 5 years basically sleeping and miserable all day long. I am wanting to reach out to people anyway I can to share my story of recovery with the world. I have made videos and even a website for this condition. It took me about 40 days on Plexus supplements to restore my health. Chronic Fatigue occurs when your immune system is in a stalemate with some unknown pathogen. This can be bacteria, virus, or most likely candida. Please do yourselves a favor and watch some of the Chronic Fatige videos at chronicwellnessclub.com Link Below.



http://www.chronicwellnessclub.com/videos?filter=Chronic%20Fatigue

littlemama33
Regular Member


Date Joined Oct 2011
Total Posts : 54
   Posted 12/16/2015 9:09 AM (GMT -6)   
I am surprised to see so many wrote on here. Thats great. We all feel close to the same way so its nice to see this. Its scary when u get the dying feeling cause u feel so bad and never get well. I read the book on the 50 recoveries from this and after all they did and tried , it came down to really one thing...Resting. Rest all the time with a good support system and people get well in a yr or two. Well....I am raising a grand daughter n helping sick daughter with her twins. My husband doesnt even live with me but half the time, he takes care of the farm. So I wish I could rest all the time. Cant so now I rest in between everything. I will check on the chronic fatigue videos tho.
Do any of u have trouble with walking when u over do? I guess I see some of u do. My legs get tight above knees n then weak.? Any other symptoms you all might share? I recently this year started frequent eye infections, anyone get these? Thanks!
Sherry

fibro, chronic fatigue, rls, ibs, depression, insomnia, and celiac.

Post Edited (littlemama33) : 12/17/2015 8:23:54 AM (GMT-7)


Nazareth
Regular Member


Date Joined Jun 2014
Total Posts : 68
   Posted 6/1/2016 10:51 PM (GMT -6)   
to try to explain it to people use the battery analogy- Tell them your day starts out with a battery that is only 1/4 charged- ad when that runso ut, you have little energy for anything- Explain to them that is exactly what CFS is- they can't understand because their batteries only ever become about 1/8 discharged from full during hte day-

Chronic fatigue syndrome seems to have a symptom called increased lactic dehydrogenase- I just ran across that info today- and basically what it means is that the body is unable to convert sugars into energy the way a healthy person does- so we are not getting the fuel we need to keep going

I have always suspected there was an energy problem somewhere along the system- either in the delivery of energy, or the usage of energy after it gets converted- I have to look further into the increased lactic dehydrogenase symptom- as it seems to confirm what I've suspected-

Before I found out about it i used to tell people that it was like my body had a clogged fuel filter, and I couldn't get the fuel i needed ot keep the engine running correctly- I would explain to them that about 1/2 way through a day I run out of fuel and can't continue on- i know they don't really get it- but it's all i could think of to try to explain how CFS and similar conditions feel (I've not been officially diagnosed with CFS- a few docs said it 'could be'- but really they don';t know what's wrong with me- but

There's also another set of conditions where the body has trouble storign and distributing glycogen- a main fuel source- but after reading through the info on them I felt I didn't quite have the symptoms they were describing- but basically it's the same thing- body not getting the fuel it needs t keep going strong and to recover normally

Nazareth
Regular Member


Date Joined Jun 2014
Total Posts : 68
   Posted 6/1/2016 11:07 PM (GMT -6)   
[[Do any of u have trouble with walking when u over do?]]

My cal muscles tighten up after about 100 yeards or so and forearms will tighten up doing simple things like even just typing- this tightness becoems painful because it doesn't release- and the muscles begin to burn- like in normal peopel who run- or bike for miles on end- or run o n treadmill- their legs get that lactic acid burning and tightness and eventually pain after a few miles-

Well- with me it happens within about 10 minutes of walking on a treadmill- or raking or whatever, and hte muscles don't relax like they should normally-

I also get very sweaty- i mean like sweat just pouring off me when trying to hike more than 1/2 mile- and i get dizzy, light-headed, sick to my stomach, Can't think well- it's like suddenly getting hit with a full blown flu for crying out loud- I have to rest for about 15 minutes, then I can walk some more- but legs soon tighten again, begin burning, pain starts- sweating, dizzy again etc-

If thsi had all happened later in life, that woudl be fine- but my goodness it struck right in my prime- 28 years old- got progressively worse, and now I'm disabled- (I have another condition too which contributed to disability- Crohn's disease- I wasn't actually put on disability for CFS as I haven';t even been officially diagnosed with it- but thankfully I was able to get disability for the Crohn;s as I don't know what I'd do without it- I'm far too weak to hold a steady job- and that comes from the CFS IF that is what i do have- IF it wasn';t for this weakness- I'd still be working even with the crohn's)

anyways- sorry for rambling- it's just been a long frustrating journey with whatever it is that is making me so weak- part of what has made it so frustrating is that others don't think it's a big deal- and it's hard to describe to them just how rotten it feels-

memaw12
Regular Member


Date Joined Mar 2013
Total Posts : 89
   Posted 6/4/2016 7:36 PM (GMT -6)   
I haven't posted for a long time on here but I really can relate to this post. I haven't found a way to make people really understand this disease and I've had it for 38 years. My husband is very understanding for the most part because he sees all the daily struggles I go through and his life has been completely altered by this illness as well.

My grown children don't really get it and we have both tried our best to explain it. We've sent them articles and given them videos but it just doesn't seem to get through.

I know it's not an easy disease to understand, and like other posters have said, we don't understand it ourselves but we don't have a choice but to believe it, because we live it!

I don't want understanding as much as I want them to believe me. I think that's the hardest part, not having those close to us believe us. They will say they do, but it's obvious that , at times, they wonder if we're really 'trying hard enough to get well'.

My kids will call me and tell me all their troubles but most of the time they don't even ask how I'm feeling. I guess it's just a given that I'm feeling bad but it would be wonderful to have someone inquire once in a while. I know it sounds like we're into self pity, but it's not that. It's that all people have a need to be loved, respected and accepted.

CFS make you have to shut yourself off from most of the activities of life but it's not a choice we make. We are victims of a disease. A little compasion would go a long way. I wish family and friends could understand that even though we can't be involved in the family activities we still want to be included, even if it's a phone call or email to share their life with us.

This is the lonliest disease I know of.
Chronic Fatigue Syndrome and Fibromyalgia since 1978. Also, O.A. IBS, Hypertension, Hypothyroidism, Pelvic Prolapse, Small Brain Cyst, Tremors, Type 2 Diabetes, Chemical Sensitivities, Sleep Disorder, Allergies, Ocular Migraines, Curved Spine, Degenerative Disc Disease.
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