Will they ever understand?

General
21

Excellent point..something we all need to do!



tntlamb said:

Before we ask "will they ever understand" we have to ask DO I UNDERSTAND.

I'm surprised how often we don't. Have you ever sat in a mall just watching people and wondered as different ones go by "what is going on in their life" If you do and don't get teary, something is wrong. parents with special needs kids always get me (we are in that class BTW we have had them in foster care for years - but its never bothered me, well I did get into a fist fight with a dad once, avoided several others, who got rather nasty when I suggested their kids pointing and laughing or name calling on the bus was inappropriate)

What gets to me are "unattractive people" especially the extremely obese. When I see the obvious attempt to make themselves as "attractive as they can. well matched clothes etc etc. I just imagine then dressing in the morning with their bright colored sweats thinking to themselves, maybe today someone will notice "me" for me. How can you not get teary?????

Everybody has "a cross to bear" (or they are taking better drugs than I get) They more understanding we are towards othesr honest to gosh, the more understanding they are to us. "Gosh honey I wish I could help you with that. it isn't fair for you to have to do it by yourself" has scored me brownies AND a foot rub.....

22

Luckliy my husband is very supportive of me. But people I work with and my mom are the ones that get me down. I asked my mom to come to Thanksgiving and she is well it would be too much for you. If it was I would not have asked. A guy at work told me I don't need to take any meds since I am a healthy female. I may look it but I sure don't feel it. We all have good days and bad days. I try to do what I can when I can. People do not understand unless they are living it or living with some one with this.

23

I have had 5 Enbrel shots. Yes they are helping but I still hurt. Not as much but I still hurt. I am not near as tired as I was. I take Arthrotec and generic of Esgic. It helps but there are few days that I do not have some pain. Right now it is my knees and feet that hurt the most. Good luck.



Karen said:

My biggest fear right now is starting the meds... Should I be worried at all?? Enbrel? is it dangerous? The dr.. doesnt want me to stay on mtx.. he thinks it is harmful in itself... Any comments or suggestions? Why doesnt pain medication touch the pain? That is what I dont understand.... if it wont touch the pain.. why take it?? Im frustrated...

24

I love this reply because as the wife of a man that has to live with this unforgiving disease, it gets overwhelming at times. There are times when you can feel like you have to just push through as we’ll and put on a happy face to be supportive. It is needed to know that your efforts are appreciated by your spouse. I will not pretend what it’s like to have this condition but as you said… We all have a cross to bear. Being supportive and putting your own needs last can get mentally hard and a few kind words are appreciated. I’m here to read posts and try to get a greater understanding of what all of you are dealing with so that I can be as supportive as possible buti am sure I am guilty of making my husband feel bad which just makes me feel selfish and guilty.



Rebel mom said:

Excellent point…something we all need to do!



tntlamb said:

Before we ask “will they ever understand” we have to ask DO I UNDERSTAND.

I’m surprised how often we don’t. Have you ever sat in a mall just watching people and wondered as different ones go by “what is going on in their life” If you do and don’t get teary, something is wrong. parents with special needs kids always get me (we are in that class BTW we have had them in foster care for years - but its never bothered me, well I did get into a fist fight with a dad once, avoided several others, who got rather nasty when I suggested their kids pointing and laughing or name calling on the bus was inappropriate)

What gets to me are “unattractive people” especially the extremely obese. When I see the obvious attempt to make themselves as "attractive as they can. well matched clothes etc etc. I just imagine then dressing in the morning with their bright colored sweats thinking to themselves, maybe today someone will notice “me” for me. How can you not get teary???

Everybody has “a cross to bear” (or they are taking better drugs than I get) They more understanding we are towards othesr honest to gosh, the more understanding they are to us. “Gosh honey I wish I could help you with that. it isn’t fair for you to have to do it by yourself” has scored me brownies AND a foot rub…

25

I find it is all about educating others. I print out and hand out information and let them read it in their own time. Sometimes it is in the way we explain things. The mere mention of the word arthritis seems to make people think it is an old persons disease from worn out joints. And now that I am in mid sixties seems to make it harder for people to see that I shouldn't be as bad as I am. I find it better to say that I have an auto-immune disease that gives me a lot of pain and it affects my joints and tendons. I can say that quickly and not take up much of someone elses time when they don't want to hear anyway.

I have one son who over reacts and treats me like I am totally incapacitated and if I do something he is afraid it will make me worse and my other son doesn't ignores me and doesn't want to know and critisized me if I repeat myself when I thought he didn't hear me. I live alone with a cat which belongs to my son. I think is here to stay as I am still minding after a year has come and gone. The cat just goes with the flow as long as I feed him and even that can be a chore some days with the ring pull can or the bending over to put the food in his dish.

This seems to be common ground.

26

I know. My two adult children had to get used to the idea of mom being sick but not useless, not being able to help babysit whenever they needed but able to do many things many times. But love is a wonderous thing. They cannot stay frustrated forever, and they are coming around. Give them time and love them and they will "get it".

What if you place the cat's bowl midway between the floor and the table, like on an old chair? Maybe you won't have to bend as much. Would the cat eat dry food instead of canned?

27

Here is a little suggestion that might help with the cat feeding. I to have a cat. I put his dry food container on the countertop of our half bath and feed her there. That way I do not have to bend over. As for the can food, I use an electric can opener.

bella said:

I find it is all about educating others. I print out and hand out information and let them read it in their own time. Sometimes it is in the way we explain things. The mere mention of the word arthritis seems to make people think it is an old persons disease from worn out joints. And now that I am in mid sixties seems to make it harder for people to see that I shouldn't be as bad as I am. I find it better to say that I have an auto-immune disease that gives me a lot of pain and it affects my joints and tendons. I can say that quickly and not take up much of someone elses time when they don't want to hear anyway.

I have one son who over reacts and treats me like I am totally incapacitated and if I do something he is afraid it will make me worse and my other son doesn't ignores me and doesn't want to know and critisized me if I repeat myself when I thought he didn't hear me. I live alone with a cat which belongs to my son. I think is here to stay as I am still minding after a year has come and gone. The cat just goes with the flow as long as I feed him and even that can be a chore some days with the ring pull can or the bending over to put the food in his dish.

This seems to be common ground.

28

We feed our cat on the dryer. That way the dogs can not get to his food. I am still able to bend over to feed the dogs.



Rebel mom said:

Here is a little suggestion that might help with the cat feeding. I to have a cat. I put his dry food container on the countertop of our half bath and feed her there. That way I do not have to bend over. As for the can food, I use an electric can opener.

bella said:

I find it is all about educating others. I print out and hand out information and let them read it in their own time. Sometimes it is in the way we explain things. The mere mention of the word arthritis seems to make people think it is an old persons disease from worn out joints. And now that I am in mid sixties seems to make it harder for people to see that I shouldn't be as bad as I am. I find it better to say that I have an auto-immune disease that gives me a lot of pain and it affects my joints and tendons. I can say that quickly and not take up much of someone elses time when they don't want to hear anyway.

I have one son who over reacts and treats me like I am totally incapacitated and if I do something he is afraid it will make me worse and my other son doesn't ignores me and doesn't want to know and critisized me if I repeat myself when I thought he didn't hear me. I live alone with a cat which belongs to my son. I think is here to stay as I am still minding after a year has come and gone. The cat just goes with the flow as long as I feed him and even that can be a chore some days with the ring pull can or the bending over to put the food in his dish.

This seems to be common ground.

29

That is definitely tough to reconcile within yourself. What is truly sad is that until it really does get worse most just don't get it, if even then. I know my bf tried to understand what was going on, but I could still tell he really didn't think it was as bad as I said it was. He'd have me trucking across 4 soccer fields toting 2 chairs, a cooler, and his bag (he was carrying an equal amount of stuff) and then give me that "REALLY?" look when I'd have to stop between every field because I just had to take a pain break. What I think recently really made him realize this isn't just some getting older aches and pains is that I have gotten much worse very quickly, and things are actually visible and tactile. My temp for the last month+ that I have been in an active severe flare has been elevated. Not scarey elevated, but pretty consistently 99-100.5. My normal temp is around 97 so this is something he can FEEL when we are sitting next to each other and every time he touches me. He kept telling me to go into the dr to get some meds and I showed him the studies that talk about how stress caused by pain and inflammation can cause a metabolic reaction such as temp changes. He also FINALLY was around when I had both sausage toes and hand seizure. Something he could see. We were watching a movie and over about an hour my foot went from "normal" to a golf ball in my ankle and my whole foot proceeding to swell. He started getting fidgety because he wanted to go get ice or something to help me, but it is what it is. Elevate, take something for the swelling and pain, heat. I deal with it every day so to me it was business as usual. He now KIND OF gets it lol.

30

I am new to the forum but I just wanted to you see this letter that I found on another forum.

Dear Everyone,

This letter is to help you understand my feelings as I deal with inflammatory arthritis and the changes it brings to my life.

I am scared. I don’t know what the future holds for me. Will I end up crippled? ? Will I continue to be able to get out on my own or will I increasingly have to depend on others?

If you find me being quiet and reflective, please don’t think I am upset with you. I am trying to sort out my fears.

I am angry. I sometimes have difficulty just completing simple tasks, such as opening a jar, or lifting things. If I appear angry please understand it is the disease I am angry with, not you.

Likewise, please understand the difference between “happy” and “healthy”. When you’ve got flu you probably feel miserable with it, but it goes away. My disease won’t go away and I can’t be miserable all the time, in fact I work really hard at not being miserable. So if you’re talking to me and I sound happy, it means I am happy. Not that I am suddenly “better”. I may still be tired and/or I may still be in pain.

Please understand that chronic illnesses are variable. It’s quite possible that one day I am able to walk around all over the place, while the next day it’s agony just walking across the room. Please don’t think this means I’m faking it or than I could “do it if I tried”. I also want you to know that arthritis moves around. Yesterday my neck was throbbing; today it is my feet, who knows what it will be tomorrow? If you want me to do something, ask if I can and I’ll tell you. 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 doing something.

If I ask for your help with something it is not because I am being lazy but because I really need help with it. It is not my goal to be a diva and have people waiting on me hand and foot. In fact, it’s rather embarrassing for me to have to ask for help with things I’ve been able to do up until my illness. For a while I wouldn’t ask for help and it would make me feel worse later. I am learning to deal with the embarrassment rather than putting myself through more pain.

I know sometimes I look perfectly healthy, but looks can be deceiving. Please understand that I am dealing with invisible pain and a lot of fatigue. Even on a good day I feel like you do when you have the flu, tired, achy and sore. Please don’t offer me sympathy; I don’t want your pity. But do offer me your support and understanding, which I truly appreciate.

Please don’t assume you know what is best for me. Arthritis has affected my joints, not my mind. I am capable of making my own decisions.

Most importantly of all, I still want to be part of the “gang”. Please continue to invite me to participate in activities. I’ll decide if I am capable of it. For example, you may think you are being considerate by not inviting me to go ice-skating with everyone else, but it hurts so much when you exclude me. Maybe I can’t skate with everyone else but I can bring the hot chocolate and watch and laugh with my friends just as I always have. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don’t take it personally; believe me I will have tried very hard not to cancel.

Finally, please remember that I am the same person I was before arthritis; arthritis doesn’t change the heart and soul. I still laugh, I still cry. I still love and I still hate. I still tease and joke with my friends and enjoy being on the receiving end of the same. I am me, I am not my disease. I am probably more compassionate to others with similar aches and pains now. Please continue to love me just as you did before. I need lots of love, understanding, support and hugs, but I don’t need to be treated with kid gloves.

Thanks for listening.
With love
Me xxx

31

Awesome letter! Very well written.

Milly8 said:

I am new to the forum but I just wanted to you see this letter that I found on another forum.



32

Oh I love that! Thanks for sharing it!

33


ShutTheFrontDoor said:

Awesome letter! Very well written.

Milly8 said:

I am new to the forum but I just wanted to you see this letter that I found on another forum.



34

Shared it with my family. Thanks!