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1:25:00 AM EST
Feeling Frustrated
Hearing cats playing, dog snoring, family sleeping...
A little cheese with my whine...
If you kept reading after the above warning... bless your heart. I promise I will try not to be too whiny!
So, tonight I went out to coffee with two friends. One also has Rheumatoid Arthritis and Lupus. The other 'officially' only Fibromyalgia, but they are now thinking RA will be added to her diagnosis soon, also.
The reason we went out is another issue that I may or may not blog about..., but eventually the talk got around to our chronic crap.
The joint pain, swollen hands and feet, and the fatigue.
Just to review....
Tired = go to sleep, get up, and feel refreshed, better, recuperated.
Fatigue = go to sleep, get up, and feel still tired, crappy, achey, sore, and flu-ish like.
Chronic diseases of the immune system (such as RA, Lupus, MS, AS, Psoriasis and Psoriatic Arthritis, Fibromyalgia, Polymyalgia, Hashimoto's Thyroiditis, Myositis etc etc etc) = FATIGUE, day after day after day after day after day............
No one truly really 'gets' it unless they too, have it.
It was refreshing to talk about that with my friends. They are newer 'friends' in my life. They were just acquaintances, mom friends, and now, so much more.
We talked about how our diseases are such an integral part of who we are now. And, how that is sometimes good, and sometimes bad.
Each of us has problems with confrontations in our lives now. I think it has do with being in pain all the time. Your emotions are always just simmering below the surface. Each of us, feels that. You can't have a meaningful discussion about something that hurts you without the tears coming, and that makes you shy away from any confrontation that may do that. You don't want to seem unprofessional or a little nutty and too emotional in certain circumstances. It was nice to be able to talk about that issue with two grown women, two other moms, who have to deal with that issue, too.
We talked about the frustration of dealing with your family that even though they 'see' it all the time, they don't really 'get' it. It is hard. And, we talked about all the other friends, and coworkers who totally don't get it at all. Everyone knows someone with some miracle cure, everyone knows someone who can do more than you.
We talked about the people who say, 'but you look so good', or 'you are too young to have arthritis' and all the interesting things you hear on the days you have to use your cane, or stay home to rest, or bow out of a committment.
Ours is an invisible disability. An invisible chronic illness. Our immune system has turned against itself, attacking our internal gears and works, causing pain and swelling that can't always be seen. The immune system working in overdrive causes the fatigue. The tiredness, the fuzzy headness, that rarely leaves.
It was a nice night out.
It sucks to have a chronic illness.
Here is a website for you to check out if you would like:
be well,
Dawn
Tags: Chronic illness, fatigue, Rheumatoid Arthritis, Lupus, Fibromyalgia
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Hmm, I learned something new today. I have Hashimoto's thyroiditis, but never linked it to my chronic fatigue syndrome before, and neither did any doctors. None of my doctors ever tried to diagnose anything so elusive as chronic fatigue with some really crippling flareups. This was in the welfare system so they would send me to the psychiatrists who finally diagnosed mental illness (thinks she is sick) I also thought mine stemmed from a bad case of scarlet fever I was the only child in my town I ever knew of to get it to the point that my skin all peeled off in big long striips. I was afraid of scarlet fever becauseI had heard it was once a killer I thought I had way too much stress in my life that caused my immune system to break down. I think fellow sufferers can trade symptoms and learn and find someone to accept them. I have lived my life on the defensive over it. My poor kids would see me barely able to walk but would not talk about it anyone because they knew relatives believed I was just peculiar not really and truly physically sick I was always trying to convince someone my symptoms were real, especially doctors. They caused me more stress than anyone trying to wrest excuses out of them not to work, so I could get welfare and food stamps, before winnng the battle for diability benefits. I had to be able to feed my kids! I came via CarnivAOL. Thanks for this entry and info. Gerry
http://journals.aol.com/gehi6/daughters-of-the-shadow-men/ -
I came via CarnivAOL and I am glad that I did.
I can only imagine how you feel day to day and it was
refreshing to read a real "this is how I feel" entry about
fatigue. I hope you and your (new) friends can continue to support one
another throughout your journey.
~Heather
http://singingwithmyheart.blogspot.com/ -
Glad you have friends like that to understand. Unseen things are harder to develope sympathy towards. Yet, seen or unseen, none of us can fully understand anothers plight or situation if we have not been there. Suppose all we can do is say I love you, I believe you, I care and I will help you if I can. Came by way of CarnivAol. - Barbara
http://journals.aol.com/bhbner2him/LifeFaithinCaneyhead/ -
I had never thought of that Dawn....I am just too connected to people to allow how a person looks to get in the way of what they are going through inside but I could imagine how many people dont get that...That would be soooooo frustrating...like you feel you have to be defensive about it with people who dont get it....That would drive me batty.....
I am glad you have met and known people that you could confide in that could understand...~Raven
2/13/07 3:31 AM