I have a family memeber who is constantly making recomendations for employment opportunities although I am on disability and take medication daily for chronic pain. I find it to be so annoying, although lately I simply say 'Oh that sounds good. I'll look into it'... with no intentions of doing that what so ever. Still, I'm annoyed. Has anything like this happened with you?
Answer:
I have been bedridden for seventeen years from the hip injury and Fibromyalgia. The only person in my family who believed I was really sick was my father. Everyone else was convinced I was just a mental case. They never have changed their opinion in all these years. There is simply no way for anyone to understand what is going on internally with the Chronic pain body. Because you look absolutely normal, yet you feel like you will never perform normally again. No one can see what the problem is. And since it is not such a known illness such as cancer it does not get the respect that people with cancer would get. No one would question a cancer patient about his or her illness because everyone has heard of it. If you have bad days because of your illness with cancer no one would question it. I'm enclosing a letter that I have written for clients to give to their families when they have Fibromyalgia. you can take and just change the words to chronic pain. I hope this helps you deal with your family better. Letter to people that don't have Fibromyalgia (FMS) and/or MPS: Having FMS/MPS means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about FMS/MPS and its effects, and of those that think they know, many are actually misinformed. In the spirit of informing those who wish to understand ... ... These are the things that I would like you to understand about me before you judge me...
- Please understand that being sick doesn't mean I'm not still a human
being. I have to spend most of my day in considerable pain and
exhaustion, and if you visit I probably don't seem like much fun to be
with, but I'm still me stuck inside this body. I still worry about work and my family and friends, and most of the time I'd still like to hear you talk about yours too. - Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time; in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please, don't say, "Oh, you're sounding better!” I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome. - Please understand that being able to stand up for ten minutes, doesn't necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one it gets more confusing. - Please repeat the above paragraph substituting, "sitting", "walking",
"thinking", "being sociable" and so on ... it applies to everything. That's what FMS/MPS does to you. - Please understand that FMS/MPS is variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back,
while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying, "But you did it before!” if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally. - Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. Telling me that I need a treadmill, or that I just need to loose (or gain) weight, get this exercise machine, join this gym, try these classes... may frustrate me to tears, and is not correct... if I was capable of doing these things, don't you know that I would? I am working with my doctor and physical therapist and am already doing the exercise and diet that I am suppose to do. Another statement that hurts is, "You just need to push yourself more, exercise harder..." Obviously FMS/MPS deals directly with muscles, and because our muscles don't repair themselves the way your muscles do, this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, FMS/MPS may cause secondary depression (wouldn't you get depressed if you were hurting and exhausted for years on end!) but it is not created by depression. - Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm out for the day (or whatever). FMS/MPS does not forgive. - If you want to suggest a cure to me, don't. It's not because I don't
appreciate the thought, and it's not because I don't want to get well.
It's because I have had almost every single one of my friends suggest
one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there were something that cured, or even helped, all people with FMS/MPS then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with FMS/MPS, and if something worked we would KNOW. - If after reading that, you still want to suggest a cure, then do it, but don't expect me to rush out and try it. I'll take what you said and discuss it with my doctor.
In many ways I depend on you - people who are not sick - I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the physical therapist. I need you on a different level too ... you're my link to the outside world... if you don't come to visit me then I might not get to see you. ... And, as much as it's possible, I need you to understand me.
Oh wow, can I relate! I'm also on disability for severe head and spinal injuries as well as MS that was brought on by the head injury. The spinal injury is also pretty severe and gets aggravated by drop foot from the MS. Thankfully, I have my solution through daily oral medication (Percocet/Oxycodone). The problem with pain from MS is that it's exacerbated due to neurology, which can't be seen, so everyone thinks you're faking it. But I was introduced to a job where I'll build my own business from home, which helps my spine. And I have physical therapy three days a week to maintain my mobility. But I understand your frustration. E-mail me if you want to talk or have any questions, okay?We Gone!
Yep. My grandmother told me I have Munchausen Syndrome and I'm a drug addict. She acts like you can just walk into a pain clinc and demand heavy narcotics and get them. I spent over a year in debiltating pain before a doctor found out what was wrong and said pain management was my only option other than a total hysterectomy that might not even help. People just don't understand that pain is not always a symptom, it's also an illness that can be as debilitating and devastating as cancer. They think you aren't sick because they can't see the pain. then when you DO get into a pain management program and get on medications that work, they treat you like a junkie because you take narcotics. Nobody realizes all we go through-- random urine tests, pill counts, opioid contracts, etc.-- just to be able to get the medication that allows us to live our lives as normally as possible. My grandmother has high blood pressure and takes pills every day to control it... why is SHE not a drug addict? It's the same deal: she has a medical condition and she takes a medication to control it. Same deal with chronic pain... but some people will always judge and never understand. Don't waste your energy worrying about it or being annoyed. People like that will never change. Just do what you're doing already and don't give it a second thought.
I know what you mean.. someone physically disabled, like missing a leg or arm,, people pity , but because I suffered head injuries and it is mostly all inside and hard to see, so, they misunderstand and even sometimes hate me for sometimes acting erratic, or just not knowing as much as they know, or without as sharp a mind. Only Nurses understand.
Subscribe to:
Post Comments (Atom)
No comments:
Post a Comment