Just need to get this off my chest...

[LISA100595]

7 Years now i've been dealing with this... I know of others who are also dealing with this as well... This by no means can compare or should compare to anyone having difficulties in their lives, it is just a way to express my own feelings, and help others understand a bit. My love and prayers go out to those I know are going through hard times and worse than me.

Chronic pain is not like other medical issues—it cannot be seen or measured, and there is no set protocol to "make it better." The unique and complicated factors that characterize chronic pain make it difficult to communicate what you are going through.

Open letter from a person with chronic pain:

Having chronic pain means many things change, and a lot of the changes are invisible.
Unlike having cancer or being hurt in an accident, most people do not understand chronic pain 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, sometimes 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, my family, my 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 not extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy!" I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you're welcome to.

• Please understand that being able to stand up for 10 minutes doesn't necessarily mean that I can stand up for 20 minutes, or an hour. Just because I managed to stand up for 30 minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can’t move. With this one, it gets more confusing every day. It can be like a yo-yo. I never know from day to day how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

• Please repeat the above paragraph substituting "sitting," "walking," "thinking," "concentrating," "being sociable," and so on; it applies to everything. That's what chronic pain does to you.

• Please understand that chronic pain is variable. It's quite possible (and for many, 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 next room. Please don't attack me when I'm ill by saying, "But you did it before!" or "Oh, come on, I know you can do this!" If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able to, please try to always remember how very lucky you are, to be physically able to do all of the things that you can do.

• Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don't know what I go through or how I suffer in my own private time. Telling me that I need to exercise or do some things to "get my mind off of it" may frustrate me to tears, and is not correct. If I was capable of doing some things any or all of the time, don't you know that I would? I am working with my doctors and I am doing what I am supposed to do. Another statement that hurts is, "You just need to push yourself more, try harder." Obviously, chronic pain can affect the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can't always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

• Please understand that if I say I have to sit down, lie down, stay in bed, or take these pills now, that probably means that I do have to do it right now, it can't be put off or forgotten just because I'm somewhere, or I'm right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

• If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood, if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions, as is the case with herbal remedies. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It's definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

• If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.

• 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, the cooking, or the cleaning. I may need you to take me to the doctor or to the store. You are my link to the "normalcy" of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.

I know that I asked a lot from you, and I do thank you for listening. It really does mean a lot.

Lisa

[Uther3867]

Amen Fistbump

[Maecius]

It's a good letter, Lisa. It's frequently hard for us to understand things outside our own experiences without these sorts of explanations.

sometimes I probably don't seem like much fun to be with

In your case, though, I find that you're always fun to talk to.

[Glowfire]

Thank you for sharing this, Lisa. I think people can have the best of intentions sometimes but with illnesses that aren't visible to the eye (be it chronic pain, depression or something else) it can be very difficult to understand the illness.


Everyone will know someone with an invisible illness at some point. Taking aboard the above could be very useful one day.

[LISA100595]

Amen Fistbump

It's a good letter, Lisa. It's frequently hard for us to understand things outside our own experiences without these sorts of explanations.

sometimes I probably don't seem like much fun to be with

In your case, though, I find that you're always fun to talk to.

Thank you for sharing this, Lisa. I think people can have the best of intentions sometimes but with illnesses that aren't visible to the eye (be it chronic pain, depression or something else) it can be very difficult to understand the illness.


Everyone will know someone with an invisible illness at some point. Taking aboard the above could be very useful one day.

Thanks guys, I really appreciate it.

[Darkcloud777]

I wanted to say to you lisa that I appreciate you lots! and always enjoy speaking with you ic and ooc . Both are a joy for me. Thats my two cents worth. Hope you feel better, I always will hope for that.

[Calodan]

Much love Lisa. It is hard living with unseen disabilities. Keep up the fight you are an awesome person from every time I have ever interacted with you from IC to OOC you are what I want to be able to do and have yet to learn the patience to do with people. Keep being an inspiration for us all.

[Storm Munin]

Keep calm and carry on Lisa.

Always enjoyed rp with you, scarce at it may be.
Amazing of you to place so much personal focus as you do on area designing for us given what you posted above, respect.

/m

[LISA100595]

I wanted to say to you lisa that I appreciate you lots! and always enjoy speaking with you ic and ooc . Both are a joy for me. Thats my two cents worth. Hope you feel better, I always will hope for that.

Much love Lisa. It is hard living with unseen disabilities. Keep up the fight you are an awesome person from every time I have ever interacted with you from IC to OOC you are what I want to be able to do and have yet to learn the patience to do with people. Keep being an inspiration for us all.

Keep calm and carry on Lisa.

Always enjoyed rp with you, scarce at it may be.
Amazing of you to place so much personal focus as you do on area designing for us given what you posted above, respect.

/m

You guys are going to make me cry if you keep that up lol Thank you all for your kind words. And yes, if you ever wonder why it takes so long for an area to get done by me, this is why and as for the attention to detail... that I blame on OCD and my incessant need for perfection

[Touri]

Hello Lisa

thank you very much for all the joyfull time over the last few years. As far as I know you, I can say, that you are a very great person with a even greater heart and I'm very happy to have you here. I appreciate your open words very much and wish you and your familiy all the luck for the future.

with kind regards

Touri

[Eclypticon]

I spent three years of my life practically in bed. I have fibromyalgia. Each day is a different set of challenges. It sucks. I understand what you must be going through. I'd like to offer my encouragement because things can get better even if they seem to be virtually hopeless. I have personally improved over the last couple of years through meds, diet, and exercise, but I am still far from being cured. Take it one day at a time, and keep your head up mate.

[kleomenes]

Its brave and very helpful to post this Lisa. I don't have chronic pain myself or any chronic illness like that but I know several who do.

Understanding how just putting one foot in front of the other to keep going forward each day can be a struggle is hard for those who don't suffer, and its good for us to hear of it so we can at least try.

[LISA100595]

Hello Lisa

thank you very much for all the joyfull time over the last few years. As far as I know you, I can say, that you are a very great person with a even greater heart and I'm very happy to have you here. I appreciate your open words very much and wish you and your familiy all the luck for the future.

with kind regards

Touri

I spent three years of my life practically in bed. I have fibromyalgia. Each day is a different set of challenges. It sucks. I understand what you must be going through. I'd like to offer my encouragement because things can get better even if they seem to be virtually hopeless. I have personally improved over the last couple of years through meds, diet, and exercise, but I am still far from being cured. Take it one day at a time, and keep your head up mate.

Its brave and very helpful to post this Lisa. I don't have chronic pain myself or any chronic illness like that but I know several who do.

Understanding how just putting one foot in front of the other to keep going forward each day can be a struggle is hard for those who don't suffer, and its good for us to hear of it so we can at least try.

Thank you all for your encouragement and well wishes, I really appreciate each and every one of them.

[CommanderKrieg]

LISA

You are an incredibly talented and creative player and person. While my characters run into yours rarely, I'm always appreciative of the RP you bring. Since starting here six years ago, there are always players that come to BG and make an unforgettable impact on our PW. Thank you for logging in and making us smile. Your guilds and contributions to the server are always greatly appreciated. Since I have bought a computer that can run the game in full graphics I have been meaning to tell you how great your areas look. Thank you for your RP, Guilds, Area creations, and feedback as an artist. I sincerely hope that a little silly RP here and there brings you plenty of smiles. So let me say hang in there! We are all happy to have you here and thankful that we have you here on BG.

PS: Anytime you want to have a pink name your welcome to join the art team and give us feedback.

[LISA100595]

LISA

You are an incredibly talented and creative player and person. While my characters run into yours rarely, I'm always appreciative of the RP you bring. Since starting here six years ago, there are always players that come to BG and make an unforgettable impact on our PW. Thank you for logging in and making us smile. Your guilds and contributions to the server are always greatly appreciated. Since I have bought a computer that can run the game in full graphics I have been meaning to tell you how great your areas look. Thank you for your RP, Guilds, Area creations, and feedback as an artist. I sincerely hope that a little silly RP here and there brings you plenty of smiles. So let me say hang in there! We are all happy to have you here and thankful that we have you here on BG.

PS: Anytime you want to have a pink name your welcome to join the art team and give us feedback.

Awe Krieg!! You know I have mad respect for you as well and I'm so glad you're PINK! Even though I am jealous of the color, I can't possibly handle another job right now LOL Thank you for your kind words.