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Words and RSDS / CRPS
It is somehow still astonishing how people who know me describe what I'm going through with this disease.
This DISEASE.
RSDS / CRPS is a disease proceeding from a disorder in my autonomic nervous system. It is an incredibly painful dystrophy, a neuro muscular disease. It is a torturous arthritis - capable of completely destroying a joint in a matter of months, or the bone of the limb, making the bone fragile and easy to break. It is a promise to the person diagnosed that their life will more than likely be one of dependence and disability and horrific pain. It is known the best for the pain it causes. It is often 'termed' as a chronic pain – disorder.
In the process of this diagnosis, this disease is referred to as “her pain level”, “her pain”, “her (oh I soooo love this one:) problems”, “she's not doing well today”. “How is her issues?' I hear MYSELF say, "my pain is high today", “I have chronic pain”. . .
If I had cancer - a disease that comes from a disorder in the human cells, people would describe me as having cancer - someone who is very ill or very sick. When the pain of the disease hits, they would not say that I'm dealing with the 'chronic pain' of cancer. .. they will say that I'm very very ill, and may be considered terminal.
Words.
Since the definition of this disease I've been diagnosed with has reached my friends and family - this 'disease' has been defined as my 'problems', my 'hurts', my 'pain', but never ever am I referred to as ill or sick. I don't have a 'disease' in their minds - sometimes even in my own mind. I'm not sick. I'm problemed. I have issues. . .heh. . . no, I HAD issues. .. and sometimes 'volumes' but that's baggage, and I left that at the door - thankyouverymuch. Yet, the tissue of my body, despite the terms used to deny it, still dies. The bones still weaken, the muscle still atrophies, and the horrendous pain of it still reminds me that I am very very ill. It screams at me, telling I am very very ill. The treatments themselves, the doctors that look at me and tell me they hope this will work because they don't want me to live with the alternative, and the denial that it didn't work, because they don't want to WITNESS the alternative.
The word ill or sick with something this serious brings in the idea of progression. . . sickness in serious illnesses usually gets worse, and worse, and worse.
With RSDS/CRPS . .. .this is a disease that progresses. It doesn't just sit still and watch the world go by. Nope, it gets up and DOES things. It's a doer. Heh. And it doesn't stop doing unless someone knocks the fool out of it and puts it into a coma. Yep. This thing should be on Wall Street. It'd get a lot more done than most brokers. Uh huh.
So, words.
The chronic pain symptom of this disease is defined because pain is mis-defined by the nervous system, but it isn't the whole of the disease. The title 'chronic pain' does nothing to tell of the atrophy or the weakness or the stiffness or the . .. progression. The progression. The physical changes of this . . .illness. The permanent disabiling dystrophy of this disease.
Yes, I'm in pain, yes it's chronic. . .it doesn't end. . .it goes from day to day. I wake up with it, I sleep with it, I largely ignore it when ever possible. . .but that possibility becomes less and less - and will continue to become less and less. One day I will not be able to ignore it. One day it will not be treatable by conventional means. One day I will live, breath, and sleeplessly go through my day every moment feeling like I am in unbearable burning alive pain.
Yes it hurts to stand for too long, grocery shopping is hard. . because of the pain.
Yes it hurts to stand for too long, grocery shopping is hard . .. . because I'm ill.
I'm ill. I have a disease. A disease that progresses. Chronic pain is a large part of my illness. . .but it does not include the other results of this illness.
My illness is like any other illness . . .it progresses. This illness does not run it's course. . .it doesn't end, there is, currently no cure.
So, I think I would like to hear . .. "Bethanna's illness is causing a high pain level today. But she's fighting it. She's keeping to her therapy schedule and doing what she can."
I'd like a spade called a spade. Words. It's amazing how we use them to keep from realizing the hard truth about something. I cannot get the support I need unless the WORDS convey the truth. My husband cannot get the support HE needs in the heavy heavy life of being a caregiver unless his WORDS convey the truth. If they are washed out and compartmentalized, no one will fully understand the depth of what he is facing.
Words. I'd like to see a change of words in dealing with this monster. I'm ill. I have a disease. This disease has an extremely high constant pain level. But I'm sick. I'm fighting this illness with everything I have. . . .but it isn't JUST chronic pain. . . .it's more than that. It's a disease.
determined
I am in the process of being diagnosed with MS, but don't have the diagnosis, yet. Well, I have a diagnosis of myelitis, which means inflammation of the central nervous system but that's just a description of my symptoms.
In any case, my friends and family do the same thing. I had thought it was because I don't have the formal diagnosis, yet, but now I am very curious. I am guessing that folks will still refer to it as my "thing" or say I'm having a "bad" day or a "good" day.
Honestly, I use these words, too. I do not want to say: "I have an incurable, chronic, progressive, debilitating disease."
I'm not sure what I'm trying to say except that you made me think, so thank you.
Grief, the process of diagnosing MS is a loooong hard road. I've been down that road, too. . and got as far as 'probable MS' the last step before the 'definitive' MS. The only thing I was missing was the plaques. I do not have MS, fortunately, I had a spine that was collapsing very slowly. So I got very lucky on one hand. . .and not so lucky on the other. *smirk*
I'm glad this made you think. . . I think my brain sort of kicked me on this one, too. I'm not quite sure what I'm going to do with my brain kicking me this morning. .. but I think I'm going to start rephrasing things . .. a little at a time. . to better communicate the reality of this thing.
I hope they do find the diagnosis soon. I know that plaques can be microscopic. . .but unless the criteria has changed, you don't necessarily have to have the plaques to be diagnosed with MS. Once they do diagnose you it will open up meds that are quite helpful . . . very expensive, but they work well to slow the progression of MS.
I think culturally we want to protect and be 'politically and socially correct'. .. but sometimes the meaning is lost in the translation. .. sometimes using the actual words is the only thing we can do to really convey the information.
Suggestions? "I'm struggling with my illness right now, but it's got at least a black eye."
"I'm not klutzy, I'm sick." (end of discussion)
Heh.
"I have an incurable, chronic, progressive, debilitating disease. . . what's your excuse?"
ok. . that was mean, I know. . . but you gotta laugh sometimes!! **grins**
I think with practice there are a lot of ways of calling any chronic progressive illness what it is without allowing the understanding of your struggle with it or what it means to your life from being undermined or swept under the rug. This is communication, not giving up or in to the disease. Communication is the mainstay of networking effectively . . and with any chronic debilitating illness, there is always always always a need for good support.
**smiles at you**
You're welcome. :)
And if you happen to have MS, please don't despair too much. I know it's serious and rather scary, I am sure, but the drug treatments they have now are incredible to what they had 25 years ago, which was nothing. They really have come a distance with helping to manage the disease.
My thoughts are with you.
I hate how words we use can't describe this illness. And how when we try, sometimes people get angry.
Anyway, this is a great entry. Do you mind if I link it? It looks like it's public, and I'd really love to share it, but I want even more to respect your privacy. It's definitely your call.
*Hugs*
And I am here if you need me for anything at all.
Yes, you may absolutely link it. I opened up my journal to public when I got diagnosed with this disease. I think it's something that should be read by the general public. You may link any public post, any time you find something link worthy. **smiles**
This entry was prompted by a telephone call I had with my mom (sigh).
Heh. .gotta love those problems in life.
I am sorry you had one of "those" phone calls. They are really frustrating, and it can be pretty hurtful when you are hearing language which doesn't exactly say "Wow, that's gotta be really tough for you, but good for you for taking care of yourself to try to keep yourself as healthy as possible." When you're starting out with this disease, hearing that is so important. I just want you to know that I think you are doing a great job of attacking this illness.
I would love to chat with you anytime, and so appreciate your offer. My email address of my username @ livejournal.com works best given that this is a public comment.
Okay, time for me to go rest. Well, maybe eat some yogurt and rest, that way I can take the meds I need.
You Have Such a Way with Words!
You have really explained this well. You should write this up in a paper and have it posted somewhere on this site or the support site you mentioned where it can be downloaded.
I think I speak for so many when I say that I have tried more ways than I can count to say the same thing and am always looking for the "right" words. Your words struck home.
One of my pet peeves is the lack of understanding about our disease; by medical and regular people.That's why I have joined so many organizations to get the word out.....
Re: You Have Such a Way with Words!
I don't think it will carry well as a paper as it's a 'blunt' 'to the point' 'in your face' 'here it is'
piece, and I would want to preserve that.
I will rewrite it and release the copyright on it - for it to be reprinted. . .and see what happens with it. I'll let you know when I get it finished. It may be next weekend before I get it done, though.
Re: You Have Such a Way with Words!
That would be great. I know you can post it on places, I have several in mind, and I would like to place it on my website if you don't mind.
Thank you very much.
Re: You Have Such a Way with Words!
http://my-pen.livejournal.com/39185.htm
Have a great day! We're off to my mom in law's house to pick up the car she's selling us. eh. .. an adventure. . lol.
Re: You Have Such a Way with Words!
Hope you're having a low pain day!!
BethAnna