Will we ever truly admit to ourselves and others we had enough? That under no circumstance can I continue pretending that all is okay. I hurt, not just an ache or a small irritation but unbearable, burning, stabbing, shooting, penetrating pain that never ceases! I want to scream it outloud so often, in church, in a store, on line, at home on the phone, at the drs everywhere! I want the world to know I lie each day that I live. I think the stigma attached that we are either drug seekers, weak, looking for attention, psychologically unbalanced, or maybe faking the intensity actually pushes us further into this disturbed thought process that I can't be honest, society can't handle it and so I would be judged. I am tired of trying to explain so I just don't anymore. I feel like an outcast and most days I just want to be "normal"! We are individuals and our norm is very different from another's norm in life but does it make it wrong? My family pretends to get it, because if they did they would not expect so much from me, they would applaud my small accomplishments each day (wearing sneakers for instance), they would call more, they might take me out to cheer me or send a flower over or a card because afterall if it was Cancer people would be stopping by with casseroles right? So, the question remains does anyone who does not suffer get it, get me, get what I can and can't do, get what would or could assist me or cheer me, do they see the real me??? My theory is that they just can't handle the truth. Yup, a line from a movie "can you handle the truth?". I honestly believe the masses can't and so to make it easier they pretend the suffering doesn't exist. It is too difficult to bear someone they love and care about hurting so much. If they can't fix it they ignore it exists!! I have often been told "I don't know how to help you, I wish I could fix you or make it better but I can't so what am I suppose to do?". Yup ignoring it sure helps.....NOT! Acknowledge that Denise is not the same and she lives in pain and suffers from depression because of it!!!! There it is out there, so does it make you see me different? No, you knew it all along but didn't know what to say right? Please talk to me, ask me questions, aknowledge that yes I am disabled and can't do what I use to, period. Now, how can we make the best of it? We have one life and should not be wasted, no day is a guaranty. Help me live, remind me what I can do, cherish the good days, support my efforts, be there on my bad days, motivate me, give me the opportunity to choose what is best for me on any given day and don't judge me! Please don't laugh when I fail but put out a hand and help me succeed!!!
Oh my gosh Denise. I should have read this morning before I told you what was happening in my life this afternoon. You summed up so much that we all feel. I am in the same place. I just want to scream at them and shake them and say listen to me, I hurt. listen to me, I'm lonely, depressed. We all have people who ask what they can do or to call them if we need something but they don't mean it. If they did, they wouldn't have to ask, they would see the pain in our eyes and on our face. God girl...you speak for so many of us. I think it's that you put into words what we can't. You express our feelings in a way we can't.
ReplyDeleteYou are truly a wonderful person and a great friend. I am going to miss you. I hope it is okay if I copy your words to keep close to my heart. You do so much for all of us RSDers or CRPS called CRIPPERS. I will never forget everything you do to try to help and to make a mark on this horrible RSD.
I wish you nothing but the best and I pray for you to go into full remission. You are one of the best people I have ever known. I am privileged for you to allow me to be your friend! Thank you for all your kind encouraging words for me.
~with love and prayers my friend
~May God bless you immensely
~Kim Meredith Fox(Robinson, not for long)
Denise,
ReplyDeleteI feel your pain. I wrote a letter similarly to my family. I think you are handling this better than I. I am at a point where I really don't want to be social at all anymore. You still have hope, where as I gave that up the day I stopped working. Every day when I wake up I think what is the point and I need to remind myself that its not just me I need to think about. Then that kinda makes me feel worse because of what they are missing out on or doing for me. Trying to decide on what is worse the depression or the pain but with out the pain there would be no depression. Perpetual mourning of what my life was or would be. I think a lot of the reason I wont really talk to people anymore is because its is so hard to put on a happy face, mostly I'm cold and angry so not who I was I don't even recognize myself or thoughts.
Sorry if this is depressing.
Wishing you the best.
Missi
Denise I so understand what your saying&feeling.Its the same in my life,just have learnt to shelve it all in the back of my mind&go on each day.The ones in my life dont get it&show no signs of wanting to!!!I thank God each day for YOU!!! My life,pain it all I have carried it all alone,until my friends on F/B.I will forever wonder&question this RSD.Knowing others are holding our hands help so much though.Thank-You for shareing your inner self with us all.I know its hard for you to do.I will follow your journey with you to the end ok??Love you
ReplyDeleteI can completely understand your frustration! I definitely think that a lot of people turn a bit of a blind eye because they don't want to acknowledge or think about suffering. Blogging and sharing what you are going through is one of the best things that you can do to try and educate those around you. I hope that the month has been kinder since you wrote this, wishing you many happy days, compassion and love xxoo
ReplyDeleteAMEN DENISE SORRY I HAVE LOST TOUCH WITH MANY OF LATE MOSTLY BECAUSE OF ALL YOU SAY HERE AS SEEMS NO ONE DOES GET IT. EVEN THOSE THAT HELP ME WHICH I GREATLY APPRECIATE STILL DON'T REALLY GET IT? I TRY TO LIVE LIFE AS I CAN DAILY AND COVER IT WITH HUMOR AS YOU KNOW AS IT NOT ONLY HELPS OTHERS BUT ME AS WELL TO KNOW MAYBE I MADE SOMEONE LAUGH A LITTLE ON A BAD DAY. THINGS AREN'T NORMAL WE ARE DISABLED AND IN PAIN BEYOND MEASUREMENT AS I WOULD SOME DAYS LIKE TO TAKE THE PAIN CHART AND THROW IT SO HARD AGAINST THE WALL IT CRACKED AS IF I SEE ANOTHER ONE MAYBE I WILL AS IT DOESN'T MOST DAYS EVEN COME CLOSE TO EXPLAINING THE PAIN WE LIVE IN DAILY. MY PRAYERS ARE ALWAYS WITH YOU AND YOUR WORTH MORE THAN ANYONE CAN PUT IN WORDS ON PAPER OR ANYWHERE ELSE NOT ONLY IN GODS EYES BUT MINE AS WELL! WE JUST HAVE TO KEEP FIGHTING THIS WAR ON EARTH UNTIL THEY FIGURE IT OUT OR TIME FOR US TO GO WHERE THERE IS NO MORE PAIN AND SUFFERING AND THAT I CAN'T IMAGINE IN A HUMAN FORM BUT I INTRUST HIS WORD TO KNOW IT IS THE TRUTH AND ONE DAY I WILL SEE THAT GLORIOUS PLACE WHERE THERE IS NO MORE SUFFERING OR PAIN! LOVE YOU MORE THAN WORDS CAN EXPRESS! GOD BLESS SKEETER
ReplyDeleteI appreciate all the comments I received and so sorry I did not write sooner then this. Some of you know that our family has changed lately and adjusting to a teenager, with issues and lots of appointments on top of mine has been a difficult adjustment for me. My pain is super high and nothing seems to help me get the rest I need or want. I did want you all to know that even when, like Jeff, I can't always keep in touch I do think about you all each day. It is hard not being able to do all you want. We are fighting insurance on top of all else and will post out letter as a reference for maybe someone else on how we wrote an appeal for coverage of an uncovered treatment. For now, be as well as you can and stay within your limits! Remember you are never alone and there are those who can understand. I love you and am so blessed by your kind words and support always! I already have my next blog idea about "moving roads" and will have time hopefully soon to write it!!!
ReplyDeleteHave a very Happy Thanksgiving and remember to be thankful each and every day for the little things that get you through your day. It is difficult but doable. Today I am thankful for my Mom, who truly loves me and wants to help even if she frustrates me it is out of care and concern for me. Love you Mom!!!!
Love and gentle hugs always Denise
Denise,
ReplyDeleteI just wanted to let you know that I also have a blog on RSD in case you're in the mood for reading instead of writing some day :)
and - I have a friend who was diagnosed with RSD in 2007. Her friends said "oh that stinks! so sorry!" and that was that. Then in 2010 she was diagnosed with breast cancer... the casseroles came a'pouring in! Luckily she beat the cancer back but it sure aggravated her RSD. But yes, your example is spot-on!
Denise, I just read this. I love it! I also wrote a letter like this a long time ago! I am blessed with a family that gets it or does a good job to try to get it! Noone can really understand until they have pain, it may not be as bad as ours but they get the feeling of not being able to do what you want when you want. My RSD decides for me everyday what I will and won't do! My daughter recently sprained her ankle so bad they thought she broke it! When she was laid up I said to her, "Now do you understand my fustration with the pain and the inability to get up and go?". She is like, "Mom, I think I do understand you a little bit better now." I was sorry she was hurt, but it took her in that shape to understand and I have had it since she was 3, she is turning 30 next week. You put into words which we cannot always do! You write so beautifully!! Thank you with all my heart!!
ReplyDelete~~soft hugs~~
Thanks Kay!!!
ReplyDelete