My emotional well being is directly linked to my physical well being. As much as I try not to let Lupus control my life it is intensely difficult to do that. Especially during the last few months. Christina in her journal hit it on the head when she wrote about pity. That is not what I want. Nor is that what I ask for. And, I think it was Christina who also wrote that when you are diagnosed with something like this a headache is no longer a headache. Numbness in your leg is simply no longer your leg falling asleep. There is always an underlying reason for this. It just enranges me and it never did before. Why it does now I don't know. Maybe it is the ignorance. Maybe it is the indifference. Maybe it is the blindness. Who knows? But it infuriates me. The scenerio goes something like this....
Hi Lu, how are you feeling today? I have been flaring? What does that mean? (I've explained this about a zillion times) I'm beyond tired. I've been sleeping a lot lately. My body hurts. My head is about to explode. (this is where I include the symptom of the moment, diarrhea ~~ vomiting ~~ fever above 102 ~~ you name it ~~) Oh, I'm tired too. I had trouble sleeping last night. I went out and had too much to drink and my head hurts. So I say...........(insert name here) No it's not the same thing...... just think about the last time you had a really bad cold or the flu. That is the way I feel most of the time. And when I flare from this illness it's multiplied like 10x if not more. Oh, you just need to get out in the sunshine. Or, you take too many pills. Or, if you got up and just started to live like a "normal" person you would feel better.
Should this not infuriate me? Because if it didn't infuriate me it would once again make me cry. And, I don't need to cry anymore. I have been crying for way too long. Crying because I have been grieving what this illness has taken away from me. People who aren't ill have no idea. They are very fortunate that they are able to just get up in the morning and feel rested. And, start their day. Even if they feel "tired" it's not a paralizing fatigue that lasts for days or weeks. That is partnered with incapacitating pain. Not just the "ouchies." That may last a day maybe 2 or 3. With me it lasts weeks maybe months. And, when I get a break from this I have to watch what I do because it will be back it always comes back. Here I am only listing the obvious stuff about Lupus. I'm not telling you about the multiple times I am in the lab getting stuck having blood work done. They are taking 10 to 12 vials of blood at a time. But the thing is my veins are no longer able to be found. They are gone from my arm. They are collapsed or twisted. Only an experienced tech can get blood. There has been talk about putting in a line to make it easier to start an IV and get blood. But for me that is not an option. I am on chemo therapy meds. Which makes me more susceptible to infection. And, with those lines the risk of infection is high. Also, what onlookers don't see is the seizures I have. So, please don't pretend to be a medical doctor and offer me advice.
Don't get me wrong. I'm not complaining here. I have learned that I have Lupus and I know what my life is. This is simply a statement of facts. (As my friend Loretta has so often said.) What I want everyone to know is that education about Lupus is important. I will have Lupus forever. Lupus for me will be ever changing. If you love me you will educate yourselves about this thing that has changed my life. Here is one of the best places to begin. http://www.lupus.org/ Here is an even easier place, it is like a slide slow and explains everything.... http://www.nlm.nih.gov/medlineplus/tutorials/lupus/id209101.html
If not than stop trying to tell me what to do. My doctors know how to treat me.
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5 comments:
Lu dear, this reminds me so much of what my sister Debi went through. By the time she got her dx of MS, she'd been suffering increasing symptoms for several years. She has the progressive sort of MS and had to begin using a walker and at one point was bedfast.
Some family members kept telling her what a mistake it was to 'just take to her bed'. Their ignorance about MS was profound and they did very little to inform themselves about it. They simply believed what they preferred to believe. It was their choice to do so.
That profound ignorance made her life much harder and it was frustrating to hear all the ignorant theories and suggestions they made.
It's very hard to deal with people who believe you are making yourself sicker or who believe simple answers will cure you.
I do pray that the people in your life will wake up, inform themselves and be empathizers and encouragers. instead of adding to your woes, dear.
loving you
karyl
Hi. I can understand how frustrating it is when people do this kind of thing. When my husband had cancer I was flooded with mail telling me what to do. People mean well but I think it wiser for them to understand that they are not doctors. I had a neighbor who had Lupus. I saw how it changed the quality of her life. I will never tell you I know how you feel, or that I feel sorry for you. I will tell you I care about you sight unseen, and am here for you like others have been for me.
*Barb* http://journals.aol.com/barbpinion/HEYLETSTALK
Lu,
You said it.
Perfectly.
It is painful to try coping with this and the last thing we all need is to have someone throw us a bowling ball at us when we are drowning.
I am praying that balance returns.
You said what needed to be said.
(((((LU))))) Love, Loretta
Lu, I have two dear friends, one my best friend with lupus. I have done alot of reading about it. I try to stay educated. That is something frustrating about my illnesses. I tell people how I feel and it gets brushed away. I tell them where they can read about it and I get, "I will read it later." This is from my friends or family members. I tell them time and time again that I NEVER wake up with energy. I need to take a nap between 3 and 5 everyday. I just must. I have one friend who insists on calling or coming by then. What is that all about??? I end up being fussy and I don't like being that way. I feel like I have the flu every day. I tell them that. Do they want to start there day that way??? Oh my, I am going on and on. Sorry. I understand not wanting pity. I NEVER want pity. If you want to read anything about my illnesses I will give you good sites as well. They are Chiari Malformation, pseudotumor cerebri (PTC), fibromyalgia and a few others that I don't think I will put down right now. I better stop typing and send you an email or IM...Love you girl! xox
Bless your heart. I can feel your frustration. May God be with you and comfort you. My prayers are with you. Thanks for your prayers also. God bless, Beckie
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