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
19 comments:
Dawn,
I am glad that you have these friends. It's important. I purchased a tee shirt from Cafe Press......... it says. My chronic disabling illness is more real than your imaginary medical expertise. I love it. I wear it with my PJ pants. Haven't worn it out where others would see it yet. Cafe Press has some great lupus/RA themed tees.
Hugs, Lu
I do understand a little of your feelings. I've spent my life, even my childhood being made ill by carbohydrates, the effects being somewhat similar to being drunk. It's a condition barely acknowledged yet and it is caused by the massive amounts of anti-biotics I've had through my life.
It was only last year, through my own research that I discovered what my problem was. What a revelation!!! I am almost normal (?) now, just through a simple diet adjustment and a refusal to have my usual winter anti biotics for my chronic sinusitis (and even that has improved)
I wish the answer to your problems could be solved as easily.
Linda. x
http://journals.aol.co.uk/lindaggeorge/GeorgeMansions/
whine away:) glad you have 2 friends who you can talk with:) have a good week
Deb
I'm glad you have women that you can talk to and relate to.
Feel good today my friend.
hugs,
Ellen
it must be nice to talk to people who can relate and who "get" it...
Lyn
I can't imagine what you must go through with that constant fatigue. I think it is so hard to have a disease that people can't SEE....it takes longer for them to realize that you really do suffer....ALL THE TIME. I am really tired today (even though I just woke up) and I am trying to plow through the day doing the best I can. I can't imagine what it must be like to have to do this and feel this way...every single day.
I hope today is an easier day for you and I am glad you got out with friends who can truly understand.
((hugs))
Jeanne
You didn't sound whiny. The things you write are eye-opening. Your blog is so many things, including educational.--Cin
Dawn dear, what a blessing to have friends who totally 'get it' and can share a coffee outing with you!
Your definition of tired vs. fatigue is A-1 and right on target. I'd never wish lupus or fibro or RA on anyone, though I'd sure like to let family and friends have a day or two 'wearing' one of those autoimmune diseases, just so's they could compare what it's like to live with vs. their 'tired' days. It would open their eyes.
loving you
karyl
I know what you mean when someone says:
"But you don't look sick..."
My counselor recently told me: "Hearing impaired people looks normal."
I agree.
until I asked: "I'm sorry, what did you say??"--turning one of my ear closer to her. {And if I'm on my back...forget talking to me.)
Gem :-)
No one knows your own pain unless they walk a mile in your shoes-this is true. I'm glad you have others you can talk to who can really understand--a support system is very important! Julie :)
I understand what you are talking about, Dawn. My Mother has Lupus, and so does my DH. It is tough to watch your loved ones be so sick, and then when they are "feeling better" it is so easy to forget that they are really still sick. My Mom is in remission, thank goodness. David still has flare-ups and gets sicker more often than all of us together. But he has a high stress job. Get plenty of rest and take care of yourself the best you can!
De
I'm so glad that you have those friends you can talk to and that they understand.
Sending you lots of prayers!
Gretchen
Believe me, I know. It is so hard being this way at times just because the healthy world doesn't get it.
Love you,
Susan
Dawn, you are most definitely not whiny. You are merely stating facts that those of us who don't suffer from lupus or RA can empathize with but never truly understand. I've heard the "you look good" many times about many AI illnesses. It has to be a relief to be able to meet with others who know just what you are feeling and vent. Glad you were able to have this time out. HUGS Chris
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
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
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/
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/
Well I won't compare myself to you all but I know a bit. I injured my foot about 6 yrs ago & 3 1/2 yrs doctors after doctors, 5 in all, had no clue & many times looked at me like I was the typical female that just wants attention! Ugh! Finally a doctor who found out but not until I lost 92% of a section of my muscle & nerve damage! 2 1/2 yrs later still dealing with it, set-backs, back problems, now knee...people don't understand..then the side effects of meds & them screwing up your sleep cycle etc. They want to know why you are not your perky self...well gee I wonder! Like you can't be perky without me being perky...all those years I think I deserve a bit back from you...am I ranting...yep sorry just a moment...I think I should start my own support group! HA!
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