In the past many weeks I have being dealing with huge waves of grief in my life about my RA, particularly I think, because I am no longer in so much denial about it.
Once in a while I just have some tears. Usually by myself, in the middle of the night when eveything is dark and quiet. Maybe I'm just disconnected and I don't feel grief the way I should. I just get on with living my life the way I have to everyday and don't think about. I just live day by day and try not to stress about what might happen in the future. Tomorrow has enough of its own problems, I'll deal with them then. I guess thats how I deal. Oh dear Cordelia, denial is so 'normal' with this stuff. I went through it for 5 years, and have the damage to feet and hands to remind me I need to 'stay the course'. You have a unique way of working through the many 'problems' related to this illness. While most of us feel it is the center of our lives, other people can't imagine what we are going through and why it is so pervasive, why it gets into our heads, influences who we are. Because every day we KNOW the pain, swelling, stiffness and we take the pills, injections, etc. that we know will help us. That's all we can do. There isn't anything else we can do. I've struggled with this disease for 15 years and still played tennis .I'd go off with my partner, and she and I would have a viox break! We supported one another. I later switched to golf with my husband and son and have had great time at that, as well. YOu can do the things you want to do, you are brave and strong, and I know you feel overwhelmed right now, but you will get through day after day of 'coping' !! and find you can survive. Your parents need you and your support and that is so lovely of you. Grief, will pass, for the loss of your 'other' self, and be replaced by a slightly 'altered' one. I'm glad you have found this forum and the people here do really care. We're always here to comfort you. You can PM me anytime, I love them. We will be your community. Hugs this morning,
Your diagram is very expressive. Cordy, You are always giving suport to anyone who needs it here. I just want to show you a little in return. You are a kind caring person with so much to offer others. I hope you save some for yourself. You seem to be a wonderful person that happens to have RA. Wishing you all the best in your grieving process. Jay Hello my nickname is droopy and I have tried to leave a message.I'm going through
deb Hi Cordelia, I'm new to this site, as of the beginning of this month. To reply to you, I do feel a whole lot of grief. You were saying that you cry out of the blue. I do have the same feelings. I also get angry out of the blue too. My Mom had RA, but the funny thing is, is that I'm adopted. I never thought I would ever get RA. I was only diagnosed 4 months ago. I also have Fibromyalgia which I've had for about 20 years or more. I need to lose weight, and I can't seem to be able to do that. My appetite is nothing much, and yet the weight still piles on. That also depresses me. My Rumie gave me a name of a Psychiartrist and I'm going to have to call her. There are also counselors on the side. I see her first, then I can see a counselor. I think I need a change of my Antidepressent. Well enough of this, if you need to talk, just message me and I'll answer. I don't think I'll ever get over the shock of having this, plus the Fibromyalgia. Take care and God Bless. Dotti51
I know how difficult it is to come to the understanding that you are not the same person you have always been. I went thru that too, and it took some time to be able to accept that, and stop mourning so much for the things I have lost. Actually I never did stop completely, but it is a little easier all the time. Now I try to be thankful for the things, ablilities, that I have left. I still really hate that I can't do some of the things I always loved to do, but the truth is that I honestly can't do them, so I try to find new things to take their place. I haven't found many, that are fulfilling, but I haven't given up just yet. Having the proper anti-depressant is critical to those of us with chronic illnesses. I don't know if I could get through a day without taking my anti-depressant. I am now on Effexor XR, and it seems to be quite effective. Of course my energy still runs out before I am done with ANYTHING, but tomorrow is another day
You have expressed how completely, overwhelmingly, depressed you are, very well in your chart. Maybe just try to tackle just one of the bubbles at a time, until there are far fewer of them. I so hope that you are able to conquer your depression. Does your doc have you on an anti-depressant? If so, it doesn't seem to be the right one for you. Please call your doc and let him/her know just how hard it is to control your sadness right now. That is a big part of our illness(es). Once you can get, at least, some relief from the emotional part of being ill, you can carry on with your life and find new outlets for your need to be a productive person. I hope you feel better very soon. Please keep us posted and let us know how you are doing. Big, gentle hugs, Nini How to deal with grief is a very hard question, and the answer is very personal, different for everyone. I have dealt with grief from my son's illness and my own. In both cases, it's been a very complex process. One of the things I did that has really helped me is to find a way to express my feelings that was able to dig deep below the surface and to share that with others that cared about me and were willing to listen. Your diagram is an example...have you been able to talk through it with people near you and close to your heart? In my case I turned to writing (mostly poetry) and music (learned to play the mandolin). It allowed me to express my feelings in a deeper way than just through normal conversation. It can be a real relief to get some of that stuff out, even if it flows out through a lot of tears and heartache. Just as an example, when my son was diagnosed I shed a lot of tears then wrote this poem. It's kind of bleak with a few rays of hope...exactly what I was feeling at the time. I shared it here a while back. It's a record of how I felt, and I can look at it now and feel relief that I was able to express those feelings, face them, and eventually get past them. I'm not suggesting you have to start writing poetry...we all express ourselves best in different ways. Be bold about sharing your deepest feelings with those you trust. It can help. Fear By Alan Duncan Fear crept in like a fog That covered a sinking bog, Sucking down into its deep pool Any nearby wandering fool. A cold damp sweats the air; Icy fingers rip and tear, Pulling down while reaching To grasp white bones bleaching. Images of black despair Framed the walls of fear's lair, A collage of dying dreams Drowned by primal screams. Is there nothing to bring peace, Forcing fear to cease Its foul quest to control Each aimless drifting soul. What purpose can we seek To tame the clawing reek That oozes from self pity, An odor of fear for all to see. The world's shiny machines Cavort with grunts and gleams, Sparking lights to scatter gloom And scare away impending doom. And yet their ceaseless toil, As elements return to soil, Halts amidst piles of rust Seduced by time's lust. Where then can hope be found; From what source a joyful sound To soothe fear's evil breath, And scatter visions of death. In each heart a spark of light, Straining to burst bright, Illuminating a passioned plea, Seeking grace and empathy. Follow the light to fear's demise; Stare into it's hollow eyes, And laugh at the empty gaze As memory fades with the lifting haze. Fear creeps out silently, Transparent now, eyes see Hope illuminated by love's light, Heaven bourne by angel's flight. I wish you the best and will pray for you, Alan Cordy...I am glad you are being so honest and a lot of sentiments have been spoken. I have to say that I am truely sorry you are afflicted with this horrible disease....you are a rare and precious jewel. You have become a special part of my life and my life is better for being with you. YOu are working through the most personal of personal things, and thank you for being willing to share it with us. I think we will all benefit by seeing you walk through to the other side....with your NEW life and all it has to offer you. To all that are going through this process right now...I am equally sorry for you. It is hard and painful and I don't know that any of the answers or the process of feeling better comes quickly. Know that you are all loved in this forum, and we look forward to building relationships with you. Cordelia, Cordelia, I think your grief is very normal. I was in denial and long time, and still struggle with that at times. When I got past denial I was very down and grieving all I had lost. I just needed to allow it, feel it and wait to get through it. You feel very alone, but you are not, and you will realize that as you work through this process. Let yourself have this time as long as long as your grief does not become depression, you will be all right. You always have such kind and encouraging words for everyone, I hope you can be bathed in our encouragement this time. You are in my prayers. Laker Hi Cordelia, Thanks for sharing. I don't have much in the way of sage advice for you right now as I guess I'm kinda' there now myself too. But I did want to wish you the best anyway! Regards, Melly Dear Cordy, Your words and emotions struck a chord with me, and obviously many others here. The times when these feelings just seem to surge through us, bringing us into a place that, although may be often visited, is still the unknown, causing a feeling of dread to envelope us. You, Alan, and so many others here have been able to relate the experience that we normally find so difficult to articulate. That in itself is extremely helpful. I wish I had the words to offer which would console and encourage you as you have done for me and numerous others. All the replies here indicate that you are someone very special and generous of heart. May you receive as many blessings as you have bestowed upon others. I'm really sorry that you are in such emotional pain. I think we've all been there at some point or are going through it now. I think it's important for anyone that feels like this to keep in contact with their doctors. Also it's crucial to be able to get your feelings out. There is nothing wrong with a long drawn-out cry. We are all here for you. It's important to be able to talk to someone. It's hard to talk to someone that doesn't quite "get it", so it's wonderful to have a place like this where anyone can come and feel comfortable talking about our situations. Take care. Dear Cordelia... those sketches are so familiar and eloquent. They reminded me that many people share your dilemma. It often seems like a closed door, but a chink of light will appear. Darlene Cohen [thankyou] put it very well: " People sometimes ask me where my own healing energy comes from. How in the midst of this pain, this implacable slow crippling, can I encourage myself and other people? My answer is that my healing comes from my bitterness itself, my despair, my terror. It comes from the shadow. I dip down into that muck again and again and then am flooded with its healing energy. Despite the renewal and vitality it gives me to face my deepest fears, I don't go willingly when they call. I've been around that wheel a million times: first I feel the despair, but I deny it for a few days; then its tugs become more insistent in proportion to my resistance; finally it overwhelms me and pulls me down, kicking and screaming all the way. It's clear I am caught, so at last I give up to this reunion with the dark aspect of my adjustment to pain and loss. Immediately the release begins: first peace and then the flood of vitality and healing energy. I can never just give up to it when I first feel it stir. You'd think after a million times with a happy ending, I could give up right away and just say, "Take me, I'm yours," but I never can. I always resist. I guess that's why it's called despair. If you went willingly, it would be called something else, like purification or renewal or something hopeful. It's staring defeat and annihilation in the face that's so terrifying; I must resist until it overwhelms me. But I've come to trust it deeply. It's enriched my life, informed my work, and taught me not to fear the dark." And I think being so strong and not easily overwhelmed, being so overwhelmed has been a shock to my system. I got through my grief by going within and becoming silent. I was able to think without outside interference. I spent a week of silence at a retreat and lived in a small cabin in the woods. My meals were left by the door. I didn't see anyone or hear another person's words, feel their breath, or see their bodies. I was silent but not alone. I worked through the disease process, found the light of life after RA, and reentered my world as a more positive being. That's when I decided that I would start a chronic illness group. My first group met once a week at the hospital. My second group met once a week at the senior center and I'm now involved in an internet chronic illness group. I've gone and come through the process with silence and then speaking to large groups of people with chronic illness. The silence made it possible for me to speak out and reach out to individuals, who for the most part were and are in much worse health than I am. You're not weak nor are you overwhelmed, you're just a person with a chronic illness who is dealing with the disease with grace and strength. Right now you just have some down time but this too shall pass. Keep writing. Lindy
It's hard to be in a dark place. Just try to hang in until it gets light again. I
wish I had something better for you.
And Debra, you are exactly right, there is nothing wrong with a long drawn out cry. It can be the most healing thing.
Oh, Alan, I meant to say thank you for sharing the poem with me and yes, as you know I am a writer and I need to write. Mine is not poetry as yours is but I am starting to journal how I feel and where I am at. Just getting that happening has been a huge thing for me. And yes, I am sharing my deepest feeling with many of those I trust, it is very important to do that not only for yourself but also for them to see where you are at and what is happening for you. And Alan, thank you for every single word you write in every post on this site. You have no idea how much words you have written help me in the deepest way.
And this afternoon after more tears this morning, I had a delightful afternoon and evening. This tears stopped and I felt drawn to go home. So I called my mother and told her Neve and I would be at their place for dinner and it was good to go home, healing. And I am forty next may but I am aware that home soon will be my place as my parents at 81 and 71 are not going to be here forever.
Thank you each one of you for your responses here. They have so helped me.
yeah, we do all hurt as humans. I am glad my story made you think.
Cordy, you've outlined and played into each and everyone's grief on this forum. We've all been there and each of us have tackled our grieving process based on our belief system, our famililes, what we've learned from our past, our friends, and even stranger's words. The above sentence is the basis of all of your grief. Because of my strength I was shocked at how overwhelmed and weak I thought I was. This was the most difficult emotion to overcome and deal with. Disappointment in myself. How could this have happened to me?
I am using silence in anyway I can to assist with this process. Silence is something I find necessary for myself and although at this time I cannot go on retreat I am finding small ways to find time to do that and yes, it is so helpful.
Thank you for somewhat normalizing what I am feeling but not invalidating it. What you said made me feel less of a fruit loop
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