Here is the thing....
I am feeling immature, ungrateful and stupid, because of how I am feeling! There are many who are less blessed and more ill than I am, so how dare I be so self-absorbed.
I am pissed off at the world. I am fed up with this rotten disease. My father is better than I am, 9 days after an angioplasty and insertion of 2 stents. He is fine. Back to normal, actually, better - because the worse blockages are freed up and he feels GREAT. At 65.
Do you have any idea how inadequate I feel having him run circles around me? I am not even 40 yet! I am ONLY 39.
I feel awful. I am in a huge flare. My hands and left wrist are messed up. My left knee keeps seizing up when I set still too long and when I sleep. My feet are sore and throbbing. My left ankle is clicking and hurting. I am in a fog of fatigue and very angry about it.
I am more depressed than I deserve to be. I have not called back people who are calling me...because I just don't have the energy to deal with anyone.
I just wish this disease had an end in sight, but like all chronic illness, it does not.
So, I ride the roller coaster of grief, denial, anger, depression, acceptance. And, I have to keep riding it over and over and over.
I am mad that hubby is completely blind to how awful I am feeling. I tried to talk to him the other night and he fell asleep on me. He knows something is wrong...but really has not tried to find out. He knows that I am sore, but he'd rather watch me pretending than know much more and I am angry about that too. On the other hand, at least he can avoid and deny it. Good for him.
I feel bad for my husband and kids that they have been saddled with such a horrible burden. How am I supposed to raise my kids when I have to push myself to get up and get dressed and then I feel like crap after I do?? How?
I just want to scream and scream and scream. And scream some more.
That is basically it in a nutshell. I am mad and depressed all at the same time. I have no right to be. I have a blessed life. And it does no good, raging at the world. I will still have this shitty disease and will still be a lump at 39.
14 comments:
(((((((HugS)))))))))))))))) to you
try and rest my friend. the flare will pass you are in my prayers 24/7
Deb
Dont worry so much about your family! They love you! No matter what is wrong with you they will always love and support you. But, I do hope you feel better. Rhonda
All you can do is let this pass. This depression. You have every right to have feelings. They are your feelings so there is no right or wrong. Your family understands. Mine does. When I try to talk to my hubby about how I am feeling or about my illness(es) I see his eyes glaze over. I know he is not listening to me or not understanding. So, now instead of talking to him about it I just ask for hugs. We were married in "Sickness and in health!" Believe me he is probably feeling very inadequate. I know mine does. And, as far as others who are less blessed or more ill....... Let me quickly tell you what my hematologist said to me. One day I was waiting to be seen and in his waiting room were others who were there for their chemo. I felt bad feeling so depressed about my illness and told him so. He told me this......... Why? What you are going through is what you are going through. You have been through so much for so long. You deserve the right to feel sad every once in a while."
Dawn, Sweetie I am feeling the same as you are now. Depressed! In so much pain, so fatigued and sick and tired of all of this. One little thing like gardening for an hour or so has kicked my butt. Hang in there my friend. Hang in there with me.
Love you bunches, LuAnne
http://journals.aol.com/thebaabee/LUANNESLIFELIVINGWITHLUPUS
(((((((((Dawn dear))))))))))) Bless your heart dear, I could write this same enty myself so many times by just changing a few names and details in it. Our grieving over what we lose bit by bit --- and the unwanted 'gifts' we receive --- with chronic illness is painful and often ongoing --- maybe because we continue to have additional losses or continue to receive additional unwanted 'gifts' -- or maybe because it is too painful to face and feel all of the strong emotions at once.
Every time in dealing with my grief, I first must overcome my strong tendency to tell myself it is wrong and ugrateful for me to feel this way. Once I get myself past the defeating self-criticism, I am enabled to go to the Lord and receive comfort, strength, mercy and grace. Yes I feel that way every time dear. But I am finally realizing feeling ungrateful occasionally is not shameful. It's sometimes a part of grieving and it's not a sin to grieve. It's staying ungrateful that breeds sin in my heart.
Be gentle with yourself dear. Feel the grief when you need to without guilt. Instead of telling yourself you shouldn't feel this way, take those feelings to our merciful and loving Father and receive all He desires to give you. Believe me, He has abundant comfort to offer and His desire is to shower you with it. I am praying for you dear.
loving you
karyl
(((((((((((Dawn))))))))))))
Like Karyl, I could have written this entry, with the exception of the DH stuff. It's so hard being sick and knowing that you're not going to get better. I struggle with that on a regular basis. My DH has allergy stuff going on right now and was complaining about it, I told him at least you'll feel better in a few days. I don't even remember what better feels like and I think I'm doing pretty good right now.
I hate that you have to go through this too. I think I have finally accepted that I have lupus but I hate knowing that other people have to go through it as well. It just sucks.
You are in my thoughts and my heart, along with all the Lupies.
Love ya lots! If you need me, you know where I am.
Hugs,
Susan
Do you wish to be a Lump ??
Remember, we cannot expect others to help us, unless we are willing to help ourselves.
What is it you want to acheive ??
hi,
i am not certain that i left comments before, but i do know that i get your entries every time you make on. this time it caught me right where you say you are. i have been going through a protracted amount oof time with nothing but situation after situation. each time i face another problem that brings on another wave of exhaustion i take to my bed. i do not have the luxury to allow myself that pleasure. it is a love/hate relationship with my bed. i long for it and when i have it i resent and dislike the whole thing. i went through teriffic efforts to make my bed lovely and inviting. it gives me pleasure to see it and feel it. the sheets, the pillows the colors etc. it is a tug of war within. you see i became a single parent 5yrs. ago. my son was just 15. probably not a good time to have your family split up. since that time his struggle has been both heartbreaking and frustrating. feeling helpless to help him, feeling helpless to help myself, compunded by financial problems and a business that i had created. i feel as if i am swimming in waters that are unpredictable. the waves carry me out further each time. i gallantly do my swimming magic and plant my feet uncertainly upon the eart. i am beginning to feel some sense of renew confidence, when i realize that the wave i didn't see coming, is now threateing once again to drown me. sso.... i am depressed and even zoloft can't do its' stuff. i try to work 3 days a week, thinking that one day recovery time inbetween will be adequate. unfortunately the longer the stress prevaild, the less energy, focus, concentration and patients i seemed to have. in other words, i know, i can relate completely. come visit; journal/aol/iminntoo/enlightenedbylupus.com marika
Hi Dawn
Don't feel bad feeling this way. At least you are aware of how you are feeling...and that's a good thing. In my experience, I learned that sometimes you just need to feel this because something is not being met. The answer is obvious to some of us. You feel you should'nt feel this way. You feel your family is counting on you yet you needed them yourself. You felt like a burden...yet you resent the thought.
Dawn, things happens for a reason. You are not a burden. In your case, there are lessons to learn and memories to make. My friend once told me when I was down and out crying because I felt so unwanted by both parents, she told me something that opened my mind...she said that it doesn't matter who I was born to..what matters is that I am surviving the ordeal because it is what I am meant to do. Now that I am aware, what can I do about it?
You can do the same thing too, Dawn. I believe in people like you.
I hope my comment doesn't upset you..I am just starting to really speak my heart and mind when leaving comments. Giving the comfort zone up is not easy. But it can be done. So my point is it's ok to feel this way because within this feeling are the answers you're looking for. I hope I made sense.
Gem :)
ah but the good news is...You have the disEase and not that it has you. You are in charge of it.....
Your children will be better adults because of your illness. How you ask? They will have learned tolerance, patient and empathy. They will know that just because a person looks good it doesn't mean that they are feeling good. They will have the self esteem that comes from being an active part of a family. It is better to not wait on them hand and foot anyway.
They will be ready for the real world because of your chronic illness and the grace they observe from you. Nothing will scare them, they've seen scared. No one will bully them. They've been thru too much to put up with crap. You, yes you, are raising not survivors but warriors.
Truly.
Husbands on the other hand, well bless their hearts, they just won't get it....no one healthly can ever understand. Ever.
Like brain surgeons who have never had brain surgery, they aren't empathic.
Clueless and loving.
ps: Did you know that multiple sclerosis and lupus are often mistaken for each other? That, in itself, makes us sisters.
Even the rage.
Yes, there are people that are worse off then you are, BUT this is YOUR body. This is what you have been given to deal with. If you want to SCREAM, SCREAM, SCREAM you have every right without feeling guilty that there are people that suffer more or are loved less. Anger and depressioin are part of the package of being human and limited. You work around those too. You are a woman TRYING and what more can you ask of yourself. You are a woman to be honored and emulated. You are dealing with what you have been given ... AND WHAT MORE CAN YOU ASK OF YOURSELF. Love, Pennie
"I have no right to be." you think you have no right to be sad and depressed? of course you have the right! try not to be too hard on yourself, my friend. i'll be praying for you ... that your dark time is over soon. in the meantime, this prayer always helps me: "Lord, help me to stand strong in You. give me the endurance to run the race and not give up. strengthen me for the battle and help me to rise again if I fall. i look to You as my Healer and Restorer. make me the whole person You created me to be." ((((( gentlest of hugs, ))))) tracey
First of all, I AM SOOO SORRY. I am well aware that WORDS do nothing, but I am offering them anyway, because in this situation I have little else to offer you.
I can only imagine your life. You DID describe your physical condition really well. You have a way with words.
Just as quickly as you can feel really horrible . . . can you feel better just as quickly? I hope so . . . I am sending positive thoughts and prayer your way dear princess!
FEEL BETTER,
Cyndy
Dawn,
I was just reading through your journal looking for word on your Father. I'm so glad he is feeling better!!! But then I discovered you weren't feeling so good. I wish I had the right words to say, but I think you said enough to get the thoughts out "there" and get moving in the right direction. Please take care and I hope you are feeling better now <since I'm on such a catch up>
Take care,
Rebecca
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