My fiancee and I were watching a movie in bed last night, Not because we were having this big romantic lustful evening, but because our bed was the only place I could get remotely comfortable after a nightmarish week of autoimmune related health issues, including severe pain. After the movie finished, I turned to him and asked him if he ever just felt like giving up. The question came out of my mouth so fast that at that moment, I realized how strongly I felt about wanting to give up. I didn’t mean giving up as in ending my life, but I meant giving up in the sense of not fighting so hard to try and be well. I wanted to give up all the doctor’s appointment, medications, advocating for myself, all of it. Most importantly I wanted to give up trying to maintain this positive attitude of “life is great, I am so grateful” crap.
Because reality is, sometimes it is crap. I have always tried to adopt this attitude of “fake it till you make it” because I honestly do believe that it works. The power of positive thinking is a strong one and thoughts do dictate emotions. If I am feeling down and out, I act like everything is better than it is; not because I am in denial but because positivity perpetuates wellness. The problem is that sometimes it does not give you the opportunity to truly acknowledge that sometimes things just suck. You go along through a chronic health situation and all of a sudden, the wall of illness seems insurmontable; the odds too difficult to beat. I think that as patients, and as human beings, we need to stop and be true to ourselves in acknowledging the reality of a lousy situation.
But maybe it is not about beating the odds and maybe it is about finding new ways to go around and over the wall of illness rather than trying to get through it. It is becoming quite apparent to me that over the past six months or so, the course of my Sjogren’s Syndrome has become more severe. Rather than being stable for a few weeks or months at a time, I am constantly dealing with one issue or symptom exacerbation after another. I cannot do everything I was capable of doing six or nine months ago. My ability to socialize on a regular basis or take any kind of trip has diminished significantly. Even the daily activities, such as housework and errands, that I could do more readily have been impacted.
So where has this left me?
It has left me really ticked off…and frustrated…and discouraged.
As this week has progressed and I have found out that my most recent pain and walking crisis may be due to Sjogren’s related nerve damage, I have come to the realization that I am constantly attempting to go through the wall rather than around it or over it. My motivation in trying to get myself better is to try and physically be the person I was before I got sick so that I can go back to work as a nurse and do all the social and physically active things that I used to be able to do. The problem with this is that I have this illness that does not allow for that. I can sit here banging my head against the wall and say I am going to be strong and determined. I WILL overcome and beat this disease. But all this does is leave me working for something that may be impossible to attain while at the same time losing sight of what I DO have. And I have a lot.
And the worst part of all this is….
I have no peace.
The nerve pain has ravaged my body leaving me sleep deprived, cranky, and overwhelmed recently. The worry and stress over how poorly my body has been functioning and the implications of yet another system involved in my illness has eaten away at me.
I have no peace.
I am so busy trying to be strong and determined in an effort to defeat the Sjogren’s beast that I have let it rob me of my peace. This in turn makes me quesion everything else about myself; my ability to follow through on social commitments, my ability to persist with my Sjogren’s book project, my ability to be the kind of partner that my fiancee deserves.
So instead of trying to go through the wall and get back the body I once had, I think it is time to find a way around the wall and develop ways to effectively cope with the body I have now. Maybe this is what I meant by saying I wanted to give up. I want to stop fighting and resisting. Rather, I want to accept the reality of where I am and the implications of my diagnosis while at the same time, continue to learn and utilize different healing treatments to restore and maintain as much of my functioning as my body will allow. I want to attempt to find ways to cope so that my pain and other symptoms do not dictate where I am mentally or spiritually as a person
And if I can accomplish this maybe, just maybe,
I will have peace.
Photo Courtesy of Chuck Myers
Photo
Breaks my heart to read this post. I do know and I don't know what you are going thru.
My thought is maybe you should not have gone off the prednisone when you did. Sometimes we cannot make it on our own without that little pill. Even though it's not something a person wants to be taking but I know a lady that has been on it for years and doing quite well. But life is to long to live in hellish pain. So maybe if you can get the steroid built up again you body might respond and give you a boost and of course take the pain pills. This disease has been given to us for unknown reason and only the tough can live with it and get tougher and it has no mercy. You are certainly in my thoughts and prayers and hope you succeed with you book. You are still so fortunate to have Chuck and dwell on compiling your book and don't worry about the house work, activities, and other task. With this disease we tend to lose friends that don't understand. Don't worry anymore over things you can no longer do. Live to the extent you can. I have given up a lot to maintain my lively hood and I am doing okay but I too want to do things I shouldn't and so often do them and pay for it. I know I am not much help but your blog bothered me and I had to respond a little bit. Just know I love you and hang in there. Take what it takes to maintain some comfort and strength. Love and gentle hugs from the warm down south. Harriet
Beautiful, Christine. I wouldn't wish for my worst eneny to walk in my shoes but if someone has to – I'm glad I found her. I, too, have a constant daily battle of acceptance. It sounds like you're working on those good ol' five stages of loss. I spend a lot of time in bargaining. Sometimes, I think it would be easier, mentally, to accept if it were Diabetes, for example. So many people want to tell us what we're doing or not doing right…the truth is we can follow a perfect line and still get pushed off of it. Sjogren's is an enigma wrapped in a riddle. What works one day doesn't work the next. Is it any wonder we feel like 'giving up' sometimes? Would that be so bad? Thank you for writing what so many of us need others to hear. xo
Harriet ~ Thank you for your words of encouragement and you are a help to me, always!Don't let this blog post disturb you though because I think all these feelings are probably a natural part of the process.
Cate ~ And I am glad to have found you as well. I can related to what you said about the diabetes because that is how I feel about cancer. I have had cancer (Hodgkin's Lymphoma) and Sjogren's now. I have lost people close to me because of cancer and 1/2 of my family has had a cancer diagnosis at some point so I don't want anyone to think I am minimizing the devastation that cancer can cause.
But here goes: If I was presented with the choice to do the cancer again or the Sjogren's again, I would choose the cancer. I had it, I was treated, and I was cured. End of story. Not true for the Sjogren's. I know not everyone is as fortunate with their cancer journey but for me, that would be the way to go.
Thank you for reading!
I understand this feeling. And it is a very hard thing to learn when you have a chronic illness. "Letting go" of what you used to have and learning to live with what you do have is rough and hurts at times. However, acceptance does help take away some of your worries. After all, we chronic chics have enough to worry about with constantly changing symptoms!
Thank you for this honest post.
My Mom has Sjogren's and I have recently been diagnosed as well. My Mom has much more severe symptoms and issues than I do, so I have seen what she has had to experience and deal with. The frustrations, pain, confusion, sadness and the realities that come with having Sjogren's. I am 25 years old and am scared for what is to come for my future with Sjogren's….but what keeps both my Mom and I going: the hope we have in Jesus Christ and God's plan for our lives. We draw strength, patience and peace from this. My Mom has "let go" and given it to the Lord; trusting in His goodness and grace, especially when she has her difficult, painful days.
I am not here to preach, but to encourage. I instantly thought of this bible verse when I read your post, and I thought I would share it with you, in hopes that it will bring light to your personal situation:
Jesus said, "Peace I leave with you, My peace I give to you; not as the world gives to you do I give to you. Let not your heart be troubled, neither let it be afraid" John 14: 27
God Bless!
I am so with you on this one right now! And I wish you all the success in doing what you need to do to make this all work for you. Sometimes I think it is the docs because they make us believe that a remedy is just under that prescription pad of theirs and yes, for some that may be true but so often for the many others of us out there we are left thinking that we are doing something wrong. And I think that is why we continue to fight it all, to not just say….oh heck this may be just the way it is going to be from now one and try to move on from that space or realm in our heart and heads and even body. My heart goes out to you and I will be reading your blog with interest not just for my own case but for my son as well who seems to have a bear of the same diagnoses as you.
True and I do realize that learning to live with what you do have can be its own blessing. Actually, I usually look at it like that but it was one of those weeks where instead I got too focused on what I have lost. Thank you for reading!
Thank you for sharing this story about you and your mom as well as the Bible verse. I can understand what you are saying about seeing what she has gone through and your concern about your age of diagnosis now. The positive aspect of that is you have another person close to you who can be an invaluable support. I am glad you stopped by!
Thank you Deb for that insight. I think that is one of the most challenging parts of this illness; learning and figuring out how we can help ourselves get well without having to solely rely on those medications.I guess it is also a fine balance of fighting and yet accepting; fighting to get the best health care we deserve while at the same time accepting where we are at any given point in time with our illness. Thank you for taking the time to check out the blog!