Life With Lupus - Online Support Group

I woke the other morning feeling pretty good.  I've been in a lot of pain and exhausted for almost 2 weeks now so I was excited...maybe its over now.  Maybe the flare or whatever it was had finally subsided and I could get on with my life.  Then I took my sons to school and went to the drug store and the pain hit and the exhaustion hit...what was I thinking?  I know if I tell my family they will say I over did it because god knows walking your kids in school and walking into a drug store is over doing it.  I'm angry.  I'm angry that Lupus took my life away from me.  I'm angry because when my youngest gives me a bear hug I have to push him away because it hurts too much.  I'm angry because I can't walk in the mall and go shopping.  I'm angry because I have to tell the kids every day mommmy can't play because i'm too tired or in too much pain.  I'm angry because I can't go in the sun without tons of sunblock and a sweater on- even if its 90 degrees!  I'm angry because I have scars on my arms that people look at-scared I have something contagious-from last years sun.  I'm angry because I can't fit any of my shoes because my feet are swollen and I must wear slippers when I go out.  I'm angry because i'm too tired to be intimate with my husband.  I'm angry because I can't think straight and my kids overwhelm me and I need help caring for them.  I'm angry I'm in pain constantly.  CONSTANTLY.  I'm angry I'm so tired.  Why me?  Why???  Can someone answer that for me. 

Then I remember how arrogant I am.  Why not me?  Why not all this?  Because I'm still here fighting the good (or bad) fight.  Others aren't so lucky.

I'm just so angry...

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Comment by OllieVy on May 20, 2014 at 9:32pm
I have also been feeling VERY angry for the past week as my flares has been horrible! I totally get how you feel! I do think it's absolutely fine to be really angry! I too have heard of the suggestion to mourn your old self and also feel pissed, because I don't want to! I want to be my old self...yet alas that's not going to happen. I do actually go horseback riding still on my "good" days and pay for it later. It's worth it just to feel like I can still do the stuff I enjoy now, just with an understanding it will haunt me for a couple weeks after:( I wish you all the best that life has to offer and we just need to keep in mind that we HAVE a life. 30 years ago...not so much:(
Comment by Beverly L. on May 15, 2014 at 3:56am
Hello!, it is okay to feel like that. Trust me we all have been there and sometime still have that moment -but it is okay! Smile Just keep your mind focused on fighting and don't give up? Lupus is not going to win this battle , there is to many of us!...Beverly L.
Comment by Lady CJ on May 14, 2014 at 7:36pm

Hello Christie, I totally understand your frustration as I have some of the symptoms that you experience, I read your comment all the way down to the very end and then I started smiling because your anger turned into why not me and I thought about myself and my frustration and how I tell myself how dare you be anger and how dare you question the creator and say why me because no matter what I go through or how bad I may feel I know that God still has me in the palm of his hand because if he didn't I wouldn't still be blessed enough to be here, fighting the good fight and I tell myself I know that there are a lot of people who are no longer with us that wish they were here to feel the exhaustion amongst other things that we experience and I that's when I start thanking God for allowing me to still be in the land of the living with my family and friends, it does get frustrating but I say keep your head up and know that God is still in control and he will never give you more than you can bear. God bless you Christine.

Comment by Louise on May 14, 2014 at 12:23pm

We have the right to be angry, just like every other person out there in this world that is fighting something that is taking away things they love. I too try to count what is positive in my life, like it at least I have all my limbs, I am not on dialysis. However, sometimes I think we just have to let the anger show but not take us over.

Comment by Christie on May 13, 2014 at 6:59am

I can't begin to tell you how much it means to me that you guys take your time and your energy to respond to me, to listen to me and to support me.  Knowing I'm not alone in this process, knowing I'm not crazy...helps.  I'm angry and I'm sad.  I need to mourn my old self...she did die in some sense.  Out of her, I arose.  Now I gotta figure out who I am. 

Thank you all again. 

Comment by Mary on May 12, 2014 at 3:32pm
I am so sorry to hear what you are going thru was in those same exact shoes a couple weeks ago excruciating pain swollen everywhere blisters in nose mouth palms of hands couldn't even hold a spoon properly to eat couldn't sleep because any weight on my shoulders was torture would go to the couch to see if that would help but no and to also let my hubby sleep because I knew he couldnt because I would literally whimper everytime I moved laid like a mummy all night but what hurt the most having a 21 month old that I was so blessed to have had after having cervical cancer and was told would never conceive again also have a 13 year old they are 12 years apart. But that's what hurt me the most couldn't carry him, or care for him like before in the mornings my hubby would get up with him because from not sleeping all night and would be literally immobile from the pain stiffness and swelling would take a while for me to get out of bed. But I wasn't angry was heart broken that after being blessed with another baby couldn't care for him and my hubby works nights so he having to get up with him was making me feel guilty and like a burden. But thank god I have a very supportive hubby, and family as a whole and once I finally saw my god sent of a doctor what I call him Dr. Marwah and he controlled my pain was amazing by the next day I was able to start moving in less than a week all the blisters and swelling were practically gone ;)hang in there you will get thru this after 3 months of that I still wake up amazed at being able to move without pain when not too long ago I would literally cry myself to sleep for 2 hours of sleep I would be able to get if that every night and getting up was torture and laying and sitting so I know how you feel but don't be angry that will only make it worse. I found that doc on my own knew I couldnt rely on the one my pcp recommended plus wasn't going to see her for another month so looked online and found him and he is literally god sent because he wasn't seeing new patients and had no open appts somehow with Gods help I got in he saw me gave me 4 shots one in each shoulder and knees and started me on Celebrex Nd Prednisone and I am doing great. Not going to say I don't have pain once in a while bit nothing compared to how I was and that's what I think of now and keeps me positive but most of all that I am not going to let me fall in a deep dark hole that won't help me I will pray that your pain will get better and wish you the best of luck and hang in there lots
Comment by Alejandra Lozano on May 12, 2014 at 6:48am
I go thru that. I was 24 and newly married when I was diagnosed. I was in shock, disbelief. I thought, my life is over. I felt horrible because I felt I had made promises to my husband and I had changed our lives. We want into marriage healthy, young and strong. And he got a lemon. He proud stood by me and has fought with me. He gives me strength, a shoulder to cry on and keeps me motivated. But there are times when I think "what's the fn point". Most times I think that I've got this. I'm strong enough, I've accepted this is my life now. And them a horrible flare takes me out for a couple days...it turns into a week...2. And I'm back at square one. I'm angry too!! I was 24! I want children! No such luck.

But after I let myself have a good cry, I remember that there are people worse off. I'm alive. I'm loved. I'm not alone.

One day at a time. We can all do this.
You have a right to be mad. Do what I do. Throw urself a mini pity party, get angry. Then wipe the tears away and stand back up and fight. We r all tired but it's got to be worth it at the end. We are all here for u
Comment by Poker Face on May 11, 2014 at 11:45pm

I literally cried and read this to my husband.  This is how I have been feeling for a while now.  I'm pissed off, mad at God, always say why because I'm young and this is not the life I thought I would have at this stage and instead I'm home instead of traveling and doing the things I loved to do.  No more horseback riding, no more long walks in the park, no more jet skiing, no more going to the beach (or anywhere that has constant sun)   I'm at the point that I have so self confidence because my hair falls out, the color of my hair has changed.  I do agree with the diet someone posted.  I have been juicing once a day and it helps provide the nutrients our body needs to keep inflammation down.  My therapist says that I have to mourn the old body and person I was.  This is part of the 5 steps of grieving.  I told him that I don't want to accept the fact that I can't clean my house and be the perfectionist and organized person I used to be.  I was always on the go and out with friends and really involved with church. I would lead bible studies in my home and now I don't have the energy to do much at all.  I'll go outside to see all the weeds that should be picked and do a bit and then can't handle the lack of energy so I go to bed.  I can't expect to have my husband help in so many ways that I need him to around the house.  He's so good to me.  When I'm sleeping he will do something that will make me happy when I get up.  He has a full time job, a part time job, then helping me, and barely has time for himself or friends.  I love him so much and above everyone HE understands the most and he is the one to educates himself to better help me.  Because of that, I should not be angry, I should feel like a princess with a disability.  I'm permanently disabled but trying in therapy to understand that this disability can make changes in other peoples lives as well as mine.  Others have it worse than myself but I can have a day or two where I can be angry at Lupus and I can hate my life.

Comment by Donatella on May 11, 2014 at 12:17pm

Hi Christie:  As you can see " anger" is a part of learning how to cope with Lupus. We all had the to go through  it. I was so angry and I also went from why me to why not me when other people are dying of cancer with no hope and no treatment. But at the end of the day is YOU that is stuck with it.

LISTEN CHRISTIE :) there is hope… there is hope!  You have to make some changes and it won't be over night but there is hope if you are pro active. 

I believe most people take a medicine for every symptom they have and that is the worst mistake. I also take something similar to  what JEFF says his sister took, mine is called FLORASTOR and I know is has helped tremendously. Is not a medicine. See your immune system is in your guts so I take one every night before going to bed. 

Another step is to change your diet, a year ago I could not walk from the pain in my feet, I was stiff in the morning for the first half an hour after getting up. exhausted beyond believe, looking at my husband drifting away from me, this angry bitter complainer of a wife he had now. I went to a clinic where I learned to eat, exercise, and most of all how to train your mind to help you.

This is a basic step you need to make; your mind could be your worst enemy or the best tool to help you get better. I tell you more, the diet did a lot of good quite soon, but the biggest change didn't come until I changed the way I view life the options I have. 

Another step are the vitamins and supplements. I can give you the names of some books and tapes that can help you with meditation and some other tips that will help you recover. Your mind and your body are upset helped them heal, without changes it won't heal. Wish you the best and let me know if I can help with any information. :) Sandra

Comment by jeep2007 on May 11, 2014 at 11:26am
I will start off by saying I am in no way trying to sell or will I make any sort of profit by giving out this info. I just hate seeing people suffer.

A doctor at ohsu took a different approach with my sister who was dying of lupus. He put her on a natural product called A.m.p floracel. After about a month her lupus symptoms were gone. Although when she decided to stop the product her symptoms returned. She got back on and the symptom went away once again ( that was about 4-5 yrs ago) The doctor also said this product could be used alongside any other medication safely. I know it sounds to good to be true but, it worked for her. She takes 12 capsule per day. Take care of yourself! Jeff

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