Sometimes I feel like I must be strong person to have RA and still push myself to work and do the things that I do. Most of the time though I feel like a wimp, and that I should just forget about the RA. Just leave it behind and get on with my life. Could I do that if I tried? Or is that just wishful thinking? I start every day, or go to bed with plans and good intentions of all the things I want and need to do. But when the time comes, I am only operating at 50%. I dont accomplish many of the tasks I set out to do. Is it just an excuse to give in a take the easy way out? Did you ever just wish you could go to sleep, and when you woke up, everything would be right again?
Every day Kay, every day I wake up and just want to go back to sleep until its all gone. Some days I say, "OK, I'm going to kick this thing, start exercising again and forget I even have this" those are usually the days that I feel good. the days i feel bad, i just want to sit in the dark and ask "why me", I can't live like this for the rest of my life". I know its just feeling sorry for myself, but I can't help it. A lot of things I once took for granted now I wish I could do, like walking across the room with wincing in pain. I don't know, it just all seems so overwhelming to me, that there are days that I just don't want to get up, seems like those days are out weighing the good one's anymore.
Phil
Oh Crunchy, how did you know what I am feeling, word for word. People are getting mad at me for cancelling out at the last minute. I keep telling them that I will go if I feel half decent and their reply is, "awe come on you will feel better once you get out." Dammit, been there, tried that! Makes a person want to become a recluse. With all of this technology, there must be a better way to treat all of these dreadful diseases. Instead of looking for cures, let's look at preventing disease. Gotta be a better way!Crunchy, you are a strong person. You are not wimping out for sanely trying to manage this illness the best way you can.
I feel that exact way every day. If there is one consistency with RA, it is that feeling. Plus, I know that right now you are not getting any relief from your medicines. You also have a physical demanding job that won't let you stop and take a break. This is very hard to handle with RA. The one thing you are not is weak.
Now, that I have finally given in to the decision to go on disability, I can look back and see how crazy my attempts to keep working were. Even without the effort of work, everything is an effort. I am more aware of my condition because I am not pushing past it all the time, trying once more to make this heroic effort to keep working.
It seems to me that our society expects us to work no matter how much pain we are in or how hard it is to just move. I really had some cruel remarks directed my way regarding my inability to "participate." Well, that's their problem. When age or illness strikes them, they will see.
But all of that doesn't make it easier to get through the day. You are working because you are strong-willed, not because you have a strong body. At some point, you may have to change that situation. But I know you are not ready for that.
Only, don't beat yourself up for having limitations. This illness is unacceptable on so many levels. Yet, here it is. We know that it is going away. So, we adjust our lives and learn to live in spite of it.
I think you do wonderfully in dealing with it. Hang in there and give yourself some credit.
Crunchy, Like Deanna said, you're a STRONG woman. The funny thing with this RA is that one minute you feel like there's nothing that you can't do and the next, you're whincing in pain.Whew!! I thought it was just me.
Glad to know I'm in such good company
Kay, What you are already doing is brave with RA. RA makes you want to do nothing, at least in my case. I WANT to work. I MISS work, but I am not strong enough to go do it. I have my doubts so I have tried your experiment many times, try to ignore the RA. The last couple weeks I have been trying to do that. I woke up today with a terrible back ache and I have been feeling all my joints everyday. I took my Enbrel yesterday. I am hoping it gives me back some strength and energy. I am going swimming this morning. Just getting there is an effort but once I get in the water, I am energized. You are doing good going to work each day. No wonder you are so tired. Listen to your body, don't lie to it. You have RA and RA sux. We want to think we still can do the things we used too. I do hate that I can't do the things I used to, at the speed at which I used to. I hate not knowing from one day to the next how I'm going to be feeling... But, I do continue to find ways to get the things done that I need.Hi Kay, I have dreams alot where I'm running,dancing,playing like I used to before this thing took over my body. Sometimes I wish I could just stay in my dreams. Many times when I wake up I can't even bring myself to get up to take my meds. I have to move a little at a time for about a half hour before I can even sit up. It get's real old constantly having to push yourself to do everything. It seems like I kind of go thru cycles. I keep thinking I'm waiting it out until they come up with a cure so I have some kind of light at the end of the tunnel.
Hang in there! Peace, Tam
Kay,
Thank you for your post, I am new to this dagum thing, and having a difficult time just wrapping my brain around it. Knowing that there are actually others who feel like this makes it a little easier. I have only been diagnosed for a few weeks now and just starting this journey. Most days I feel ok and besides just moving a little slower than before or wincing slightly when I move the wrong way, I am pretty much the same as before. Yesterday was a great day it only took about 1 hour to be moving good. I did laundry (lots of it) Cooked dinner and picked up my house. Today I have no energy, no desire to move let alone get every one ready for the first day of school and back to work tomorrow. I just feel blah not really caring if I move or if anything gets done. RA SUCKS!!!!!!!!!!!!!!!!
Wow, what an encredible response guys! I guess we do really all go through those mixed feelings, and frustrations. You know, I think alot of people think that 'we' are lazy or just not trying hard enough...and sometimes those same doubts haunt our own minds.
One thing that Tammy said stuck with me...because it is such an all emcompasing thought..."It get's real old constantly having to push yourself to do everything" That is the truth. It is not that I dont like what I do for a living, and I dont hate chores at home or shopping, and I love taking my kids to sporting events and other activities. But what I do despise, is having to push myself, drag myself around to get everything done.
And with all of the struggle and strain, I often still fall short of my own expectations...and maybe even shorter still of my families expectations.
Dont get me wrong, they are a good family...but with needs just like any other. And if you cant meet the needs of your family, what the hell are you good for?
Kay, there's more to being a good mom or wife than taking the kids to sporting events. You can still nuture them. You can still give them advice, laugh at their silly jokes, give out the hugs, encourage them and show them determination and courage with your journey down the RA road.Wow! This is all very honest, very touching and therefore very "healing" in nature!
It's a very tough life to live with the pain, the fatigue, feeling disappointed, feeling like we are disappointing others, experiencing insensitive or downright rude remarks, some cutting so very deep into our being.
I have been "totally medically disabled" with severe pain and severe fatigue for 22 years now. Every single doctor I have ever seen, if asked, tells me the "truths" about how serious my various autoimmune illnesses are and that I'll most likely not be without pain for any length of time. They expect this all to progress. It has done so, slowly.
When I first became ill, I was so distraught. I was very distraught for the first two years, especially. I had been very athletic. I had played sports, even in college. I had run every morning, etc., etc. Suddenly, I could not do those things at all. They were a large part of who I was and what I'd enjoyed in life. Athletics were also the way I'd dealt withstresss. Suddenly, I could not do any of it and I had lost the main way I had for dealing withall of the stress of becoming ill.
Many acquaintances disappeared. I could not keep their pace. THey could not bear the thought that this could also happen to them. They could not deal with it. I had to deal with it.
I did not do well with it, at all. I was young and had not learned many things about life and how to deal with it. I was fortuante enough to have a female doctor who would spend extra time with me. She had spent a great deal of time with me. She had seen me three times a week, because she knew what I had planned, since I could not otherwise escape this pain and the fatigue and the cognitive fog. She'd taken the time and had shown me the compassion to keep me alive...until I could begin to adjust, until I could find value in myself despite illnes, until I could feel relatively good about what I could do, until I could start other relationships in which people were kind enough and compassionate enough to accept me and to help me accept myself for being ill.
It was a very tough time in my life...very, very tough. I am sharing about it now, in hopes it will somehow assist someone anyone with their feelings and their perspective about their illness.
Over time, I did find a different and more accepting perspective and this became stronger and stronger as time went on.
I still do have those days and sometimes a group of days...when it all seems like too much and when I feel like I've been a "good sport" for long enough! During those times, I am feeling like I'd rather die.
Yet, those days aren't as often and the groups of days do n ot last so long.
I have found it important, for me, to always keep myself treated (preventatively) for depression. It does not keep me from feeling desperately sad at times. Yet, it does keep me from going into an ongoing severe depression. Sadness, although not enjoyable, is a valid feeling. Crying is something more shunned in the U.S. Think of other countries where people of both genders cry just as openly as they laugh... out in public!
To this day, most of my immediate family will tell me they will never understand why I could not attend some function (I may have missed while I was unable to walk even to the bath from my bed because I was in such a flare, or I was in so much uncontrolled pain that I was literally crying for help and had to go to the ER for morphine injections, etc.). If they do not "get it," after 22 years, when will they? Maybe never. They don't get it because they do not want to "get it." I can not let these individuals drag me down. They can choose to be ignorant; it is their lives. I cannot make them be sensitive or understanding or compassionate... or anything!
Three of my family members have "come around," because they'd wanted to know. They'd finally realized this was not going to go away and if they'd needed to be so frightened that they could not face this with me, they could not be a healthy part of my life. There's never a guarantee that others will understand, will even try to understand, etc. Somehoe we all have tosee our own worth despite that. Husbands leave wives, wives leave husbands, etc., over illness. There just are no guarantees.
I had met my husband after I became ill. He had never known me when I was well. Is that a good thng? I don't know. I think he would have different expectations of me if we had known one another and had married before I became ill. (Too many do not stand by their wedding vows. Too many abandon someone who is ill and may need them more than ever. That is saddening. Some spouses just add to the illness by never accepting it. They just cntinue to get angry; in those cases, maybe it is best that they go? )
As my story has gone, thus far, I actually found the love of my life after becoming chronically ill. That was worth it, as many other things have been well worht it. Our marriage isn't all fun! We have our times of having diffficulties dealing with "flares," etc. This is not a "Cinderella story!"
This is a challenge none of us had wanted. Heck, I would have gladly accepted an athletic challenge, or another type of a challenge. This is a challenge that goes far beyond anything we can fully describe. The challenge is something like....see if you can find value in yourself and in your life while ill, see if you can live through some very cruel episodes and some very cruel remarks, see just what you can overcome...in your heart and in your soul.
How can you, or can you, transform the pain somehow? The physical pain, the emotinal pain the deep wound to the soul? Just when you think you've mastered it, along comes a yet bigger challenge.
We all can do it. It is not easy. It hurts like hell..in so many ways. yet, we all can do it. We have to decide if we accept the challenge of it all. There is no shame in not accepting the challenge, in my mind. Yet, thus far, I have chosen to accept the challenge...largely because I want to be there for myself and for others. I have found making a fully conscious choice, sometimes every day, helps me to face whatever I must that same day.
It's something we must take moment by moment. When I can, I find it very helpful to become aware of what I am saying to myself when a wince of pain occurs, or when I know I am relapsing. I have had to learn to tell myself more encouraging things. I do not mean to ignore or to "gloss over" the truths. (Doing that wil only lead you further from your own acceptance.) We can, however, reassign/transform some of our experiences some of the time. This can take a great deal of time and patience. If you work at this, do not "grade" yourself on it. Habitual thoughts are very difficult to change; yet, not impossible.
Find various sources of support. Utilize these sources. This is a great place! yet, try to increase your options incase you need more support on a day there isn't much activity here. The sharing here is so healthy for all of us. We may benefit fom sharing our thoughts and also by hearing those of others.
You can have some self-pity, as long as you can also shift out of that "mode," as well. So many people are out there suffering, i none way or another. I am always amamzed at how many people do not have lives with out struggles...or even lives without health struggles.
I'd used to think...this is not fair...life is not supposed to be like this.
When I'd opened my eyes to the rest of my community, to the rest of the world, so many souls were crying out from some source of pain, I'd finaally realized that this is life. This is life. This is the reality for many and it will be the relity for all at some point in their lives. This is life.
I'll end with this:
In my recent real estate searches, I'd attended an appointment , meeting a realtor with my husband. As we went through the property I was obviously in pain and trying to hide it. I'd finally asked her to excuse me if I'd seemed a little distant, as I am in great pain right now. A few minutes later, she took me aside and asked me if we could "talk." I'd said yes. She'd asked me why I was in such pain? I'd told her. She'd said, "Excuse me if I seem a little 'off' today. I am a 7 year survivor of lymphoma and I have just come form the doctor's office and he has just told me I have to start chemo again...right away."
I could have said nothing, and was trying to say nothing about my suffering. She, too, was trying not to show her pain, some of the truth about her struggles in life. Yet, we were both better off when we had given one another the permission to share..to reach out...to care.
You see, this is life. Not only is this life, we all need one another and one another's honesty in order to deal with our lives as best we can.
Blessings.....along with the pain..... they are both here in this life.
With admiration for each and every one here.... I remain..."hopeful."
Hopeful; When I first became ill, I was so distraught. I was very distraught for the first two years, especially. I had been very athletic. I had played sports, even in college. I had run every morning, etc., etc. Suddenly, I could not do those things at all. They were a large part of who I was and what I'd enjoyed in life. Athletics were also the way I'd dealt withstresss. Suddenly, I could not do any of it and I had lost the main way I had for dealing withall of the stress of becoming ill. Many acquaintances disappeared. I could not keep their pace. THey could not bear the thought that this could also happen to them. They could not deal with it. I had to deal with it. This is exactly what has happened to me Hopeful. How to deal with stress without exercise is huge. I have lost 99% of my friends because they are all so active. They look at me now like some kind of stranger
It's interesting we have similar experiences with the beginnings of our struggles with illness! Do you really feel like it is taking you too long to deal with your RA? I do not recall how long it has been for you, Roxy. Yet, I can tell you this and you already know this: any amount of time in dealing with this feels like way too long. How long does it take to "deal with" or "to accept" our illnesses? I think it takes every single day we suffer from it. I think it has to become a conscious decision every single day...for as long as it is active.We have these "every other day lives," you had written about! Our bodies dictate if we can get up and pack or not! Our mind has a choice in how to "deal with that." If we must rest all day, our mind can be telling us things that undermine our rest, our sense of self-worth, etc. For me, it has been a constant struggle to be sure I was not allowing my prior "programming" in my mind get carried away with berating myself, etc. It is an every day challenge. Some days it is a bigger challenge than others. You seem to be grabbing the bull by the horns! You seem to have the ability to take some control of your life despite the pain and the fatigue. That is the "athlete" in you..the "I play to win" streak, isn't it? It serves you well. I celebrate your accomplishments with you; yet, I know you still have some "dark nights of the soul." We all do. Even those of us who may be perceived as being strong... we still have some very deep wounds in our souls due to the heartbreak we have for our pain and for the pain others also experience. We'd like to fix it all...for everyone! We are sad because we cannot. Nobody wants to "give in to it!" No way! So...there's some type of a semi-content medium we must reach...whereby we accept it enough for today to not allow it to spoil our entire day: yet, we would also leap at the chance to be cured! We don't want to "settle for it," yet we have to find a way to live (truly live) in some amount of peace with it. This has to be one of life's most difficult challenges. (How to live with chronic pain, chronic fatigue, chronic illness, etc.) Once in awhile, after working very hard on my thoughts about my pain and my limitations, I'll think,"Oh wonderful, I finally am at peace with this on the good days and the bad days!" Yet, that doesn't last very long...I'll have another obstacle thron into my path and I might become totally demoralized for a day or two. I really do believ it has been a daily decision for me (sometimes more than once per day) to decide to accept it for what it is and to decide to be at peace with it...for now. It is very difficult to accept what seems so "unacceptable!" You have a great deal going on! Good stuff! Yet, also taxing! You have been in my prayers, as I do know just how taxing finding a place and moving can be. I pray you and your family will settle in at the new place and find a deep sense of community/family, love, blessing and healing for all! I am praying this new home, with all of you together, will be a haven and a place of healing for each and every one of you! I deeply admire you , your compassion and your devotion to those you love. That is what we are here for! Many blessings await you!
THANK YOU all !!!! I am sure that I am not alone in saying I couldn't have made it this far without this board and the people on it !!!! Thank you !!!!! But it would really hurt to have people ditch you because of a disease. That really sucks. Crunchy- I'm a Recovery Room nurse. I worked last Saturday for 12 hours! It just about killed me. My hips hurt so bad, it was an effort to get to the parking lot! I'm only 38 years old. There are RNs in there 60s working full time! I sometimes feel like my mind can control how I feel physically, and when I'm hurting I just need to suck it up and get over it. I feel a lot of guilt, too.
Copyright ArthritisInsight.com