Have you ever tried really, really, really hard – and repeatedly – to make yourself feel better, but nothing seems to work? And no matter what you do, or how you do it, you just keep on getting sick, and you just keep on getting sicker, and you keep having flare ups, and you keep having even more flare ups. And some of those flare ups are really, really, scary. And some of those flare ups are really, really painful.
And because there’s nothing you can do to prevent those flare ups, thanks to extensive autoimmune issues, and because there’s nothing you can do to prevent from getting sick, you start to feel really, really, frustrated. And that frustration turns into anger. And that anger turns into rage. And that rage leads to a very dark depression. And that kind of depression makes you withdraw from the world. And then you feel really, really lonely.
And even though your family and friends are totally super supportive, and they want to be there for you – except that you don’t really want to socialize, because all you have to talk about are your medical problems, and side effects from medications, and the cost of prescriptions, or how many doctor appointments you have in one week. And that makes for some pretty lousy conversation, especially when you’re not 85 years old.
But what REALLY makes you THE MOST MAD is when you cook a special meal for your family, and you don’t eat any of it, not even ONE BITE, specifically to AVOID any kind of allergic reaction or flare up – only to wake up the next morning with a fat, swollen, puffy lip ANYWAY. So when people ask questions like, “What did you eat?” basically insinuating you caused your own flare up, that just makes you want to stab them, in the throat, with unsharpened rusty scissors.
And you’re terrified – every single day – riddled with anxiety, because you never know what’s going to set off the next attack, or how bad the next attack will be, or how long the next attack will last, or who will be available to drive you to the Emergency Room when the next attack becomes life threatening. So you walk around in a perpetual state of panic. And distress. And worry. And misery.
And you’re exhausted, simply from being trying to ‘positive’ for everyone else, all of the time. And you’re sick of of these rules and restrictions affecting the quality of your life – like avoiding certain foods, or not going to the movie theater because of your compromised immune system – because even when you follow all of those rules and restrictions, you still wind up in the hospital. Which just makes you want to give up, altogether. And you’re so fucking tired you can’t even muster up the strength to brush the mold off your teeth.
So you stop writing. And blogging. And reading. And commenting. And tweeting. And participating. And you just hideout, under the covers, watching television, while ‘suffering in silence’ because someone once told you there’s a type of dignity in keeping these kinds of problems to yourself.
Except that suffering in silence, only makes you feel even worse, because you really need to scream on the top of your lungs – and cry uncontrollably – to anyone willing to listen.
Because, seriously?
This shit just isn’t fucking fair.
Who wouldn’t be pissed? It is just too much to have to face a reoccurring illness over and over again. I agree with some of the other commenters, that perhaps venting is in order. Trying to carry this burden alone adds to the weight of the burden. Unload as often as your need to and let us (your concerned) friends, help lift you up. We care…((((hugs))))
Thank you so much, Cheryl.
I truly appreciate your support and for listening to me.
Obviously, I’ve been having a tough time lately.
Wow. I’m sorry to rejoin your army of readers during such a rough time for you. Reading about your situation makes me really sad and angry. You’re right – it’s not fair at all. Having something like that to look forward to would make a person not want to get out of bed at all… ever. I really hope things improve for you. I really do. You deserve so much better than this.
Thanks, Mike. There are days when I really don’t want to get out of bed – but I force myself to rally anyway.
Luckily, I have support from friends, and family, and you fine people. Otherwise, I really don’t know what I would do.
I simply don’t know how you do it. Stay so happy most of the time, I mean. I’m not sure I could stay happy with all that you have to handle, ALL of the time. Even when you feel good, you must be aware of everything you eat, or do, to stay well. You absolutely must be able to shout about it, when things go wrong and your blog is probably the best place to do that, so you moan away and complain all you want to. We’re all happy to listen to you and would do more, if it were possible 🙂
I really do my best to stay positive 99% of the time, Babs.
But when that 1% kicks in I get SEVERELY depressed. Like can’t even function depressed.
Thank you for listening to me vent.
Well. I’m grateful for my own OK health, but know what it’s like to feel like you are always complaining about health issues since I’ve had 2 family members, a close young friend, and a young pet get cancer in the past few years. My thoughts are with you and if you ever need anyone to talk to lemme know. I can’t stand it when people tell me to be positive all the time. It’s so not real to me. Take care!
No, this shit definitely isn’t fair! Poor you. 🙁 I don’t know who told you that crap about ‘dignity in suffering in silence’ but if they say such a cruel, inane thing again, tell them you need to yell and curse to get the endorphins flowing! That’s what I do!
Thank you for understanding, Maria.
XOXO
Yeah – venting is MUCH better!
love love love LOVE you. xxxxxx
Mel. That absolutely fucking sucks. With all those conditions/ailments you have every right to be pissed off/mad/tired/depressed. My heart is breaking for you and I only wish I could do something to take some of that crap off of your shoulders. Or at least give you a big hug. It is SOFAKING unfair. You deserve better. I fully understand why don’t have the energy/drive to post and want to hunker down. I would have had the same outlook with a lot fewer challenges than you have had. Post when you feel like it. We’ll always be here for you. If you need to vent or someone to yell at, shoot me an e-mail.
In the meanwhile, I vote for Terri’s suggestion. I’ll bring the gloves and vodka.
XOXOXOXO
Thanks, Agg.
I am REALLY struggling these days.
And I am REALLY sad, and depressed, and angry, and anxious – and all that jazz.
I find there’s a certain amount of satisfaction in telling someone who told you that dignity comes from keeping this all to your self to shut the EFF up. I appreciate that you share it. People need to understand it’s not all sunshine and roses yes YOU ALWAYS try to make everybody else feel good (even though that is so not your job). If you hadn’t been the person I’ve come to know over the past seven years (and I feel like we’ve been neighbors or something — I’d definitely trade my real neighbors for you any day) — well, hell. Things just wouldn’t be the same. It’s good to be mad over this. Hell, I get mad over stoopid things. So glad this past week is behind you, glad you’re getting more snow, and fingers crossed that you will finally find out how your body can begin to heal. You deserve it. Thanks for being such a bright light, Meleah. Sending you warm hugs from Paradise.
I love you, KellyPea.
And, honestly – I’m quite hopeful things MIGHT improve drastically for me, eventually. Based upon many of my test results, my new allergist believes that I am an excellent candidate for the Medical Academy of Science at UPenn. Which would be fantastic! Kind of like having my own ?Dr. House Team’ working round the clock figuring out why I keep having so many flare ups and finding solutions to improve the quality of my health.
But I won’t know any more information until February 5th, so let’s just keep our fingers crossed and pray that I get into the program.
I wish you could come down and sit on the beach with me and scream your head off! (I’ll sit quietly by and pretend not to know you.)
Aw. Thanks, Pat. I wish I could too.
That really sucks. But you stopped by and commented on my blog, and now I feel super honored! Thank you! And I hope you feel better!
Yes, this really DOES suck.
Luckily, I was able to make the blog rounds this week. It was SO nice to read / see what’s happening in all of YOUR lives.
AMEN GIRL. You are allowed to bitch, to cry, to laugh, to do WHATEVER YOU WANT. To not write, to write…. you deserve a trophy AND a tiara! And a drink. Definitely a drink!!!
XOXOXOXOXO
I’m sorry I’m only reading this now. I had no idea you were suffering so. It breaks my heart when really shitty stuff happens to really funny, bright, talented, adorable, loving people. Yes, I’m talking about you. It might help to talk with others who are experiencing the same ailments. Have you tried to find a support group? It’s very harmful to lock yourself away, my friend. You never know where help lies until open yourself up to it. Give it a try. Wish I could be there to give you a big hug. xo
Thanks, Jayne.
Writing this out helped a lot. But I still feel very isolated. And angry. And sad.
And I would very much welcome a hug from you.
XOXO
The isolation is why I suggested a support group, and I think it is important to at least look into that. In the meantime, I’m available to Skype if you’d like to do that, sweetie. Just let me know and we’ll set a time.
Awww. Thank you SO much, Jayne.
And yeah I will be looking into support groups.
Although, I might be better off with my own personal therapist.
Amen to that, sister. And fuck dignity. Friends keep you going in this fucked-up world far longer than dignity ever will. Also? I love you. And I know sometimes that’s not enough, but sometimes, it is, so there.
Thank you, Margaret!
Yeah, fuck dignity.
And hooray for your love!
xoxoxo
Wish I could fix you….
I can answer yes to most of those questions. I won’t tell you a bunch of crap like “It will get better” or other meaningless things like that. It MIGHT get better but the harsh reality of strange illnesses is that they also might NOT get better. I will just tell you that I do understand. Really.
Thank you. I wish you could too.
Thanks soooo much, Nora!
And thanks for reaching out to me on Facebook!
I promise I will keep you posted.
xoxo
Isolation can drive you batty. Maybe your library has a writing group.
I’m isolated a lot, too. I work three days a week out of my employer’s home office. It’s only the two of us, plus the birds. He’s got feeders hanging outside a bow window. If I start talking to the birds and they talk back, that will be the tipping point.
I am totally imagining you having a full-blown conversation with birds right now.
And it’s cracking me up.
pls email me! lemonademadedaily (gmail)
Okay.
I’m not sure you’ll get this because I don’t normally use Discqus. I signed up last night so I could talk to you without having it posted.
Not knowing which button is the correct one…. she presses both of them. Hopefully that did not set off a timer somewhere…
I can identify with the immune system problems. Radiation and ongoing chemo has screwed up my system. I’m sorry you have to go through all these things. Can’t be fun. It’s weird isn’t it that we have more doctors than friends. But keep that great attitude of yours that I often see. After all, if you’re like me you’ve considered the alternative and living seems far more preferable. And, besides, you’ve got your blogging buddies – like me – to make you laugh.
I think I’ll try this one since it doesn’t seem to post immediately and what I wanted to say reveals my ills that the world doesn’t need to know
All I can offer is hugs, my friend.
Dammit. I chose poorly.
Well here goes this anyways since it’s important enough to tell you even though this might get published. I’ll live with it.
I REALLY cares what happens to you and what you’ve been going through. I’ve not blogged much in the past year or so, more really… but as I was digressing (pls excuse my poor humor, it’s something that I do when I need to).
What you described in your post sounds EXACTLY what I have been recovering from for the last year+ I don’t know if I can do this short, but I’ll try not to make it Tolstoy. I’m not sure what the underlying issues are that led your doctors to prescribe you steroids. They can make a real difference sometimes I’ve experienced. But if you keep taking treatment after treatment like several in a year, it can have some very dangerous side effects.
It’s normal to be frustrated when anyone is that ill. In my case, I fell and ended up in surgery for my back after a couple of rounds of steroids when other things didn’t help. I felt bouts of depression, anger, frustration even when I did all the things you are supposed to when these things happen. But it was like I was looking on but couldn’t stop it. My husband noticed that I was cleaning the house (which is not something he’s ever seen before) but it was like I had to finish whatever I was doing and it had to be done meticulously. Really weird for me. (not the cleaning, just the feeling). So I told ALL of my doctors about it at my husband’s urging. Anyway, during all this I was doing physical therapy and after about seven months, things still weren’t progressing even though they had already put me on a round of steroids. So while on my second round I ended up in emergency surgery on my back again, but when I came out of surgery, I started seeing spiders going in and out of the air vents above me. My husband said that when I told them they said “shhh” or you’ll never get out of here in a joking way. My husband was not amused.
So I am still on the steroids in the hospital because apparently it’s very dangerous to just stop. After I woke up my husband talked to me. He ended up talking to one of the doctors who sent a psychologist who said every thing was fine. It was just after effects of the anesthesia. (the next day?)
Well, I’ve gotten to the part that embarrasses and humiliates me. I don’t remember very much, but I went to leave because my husband hadn’t made it back to the hospital yet and apparently I was tired of waiting. So I tried to leave. In my johnny. two days after surgery. It took 9 people to get me back into bed and I thank god I can’t remember this very well, but I actually struck an officer while everyone was trying to take me down to the floor. I became aware sometime after strapped to the bed.
They looked back at my records and then told us that I was having a severe reaction from these steroids and that was always a possibility. Then they told me I still had to take them to finish out the round because it was more dangerous to just stop them. So I spent a couple more days in the hospital, hearing people I knew were not there. I was having crying jags because I thought I had hurt someone even though they assured me I hadn’t.
Meleah. I have NEVER struck another human being in my life. I was horrified. I’m still horrified and crying while I am writing this, but you are important to me. Yes I know we’re basically strangers but that’s just the way I feel. I feel strong enough about you, to trust you with something I never talk about. Now I didn’t know it at the time and when I was told I didn’t ask too much about it, but apparently that kind of reaction has a 50/50 % survival rate.
At the very least, google and ask your doctor questions and tell them everything you said in your post. This hasn’t happened overnight so it feels like it crept up on me. It takes about a year for your body to expunge any trace of the steroid in your system and apparently it doesn’t matter which steroid you take, it’s a side effect as a whole.
I’m done. I have to go blow my nose. If you now think I’m just nuts and off my rocker, it will hurt. but not as bad as if something happened and I didn’t warn you. I wouldn’t be able to live with myself.
Paulette Smith
Lemon Stand
I spent
got out and was doing pt but things still were not getting better the way it was supposed to. So I got another round of steriods and they seem to work less than before but I figure it was worth it if the doctors weren’t worried about the prescriptions. I didn’t know the difference. Then I had to have emergency surgery on my back
It is very obvious I did not reread this or I would never have sent it which was the whole reason why I didn’t reread it. Please forgive me.
Yes, I received your comment. But I haven’t had the time to email you.
Thank you, John.
I am usually in good spirits and I am usually pretty positive, especially when considering the alternatives.
However, as of late, I can’t seem to get out of this funk.
Mostly because I have nothing to talk about, or write about, except for all of these health issues.
And it’s getting really old, really fast.
But thank you for being such a good friend to me and for always making me laugh!
🙂
You can stop commenting now. They’re all coming through.
Thank you, so very much, Jayne.
XOXOX
I have had nothing but positive reactions to steriods, in fact, prednisone has saved my life, several times. Thank you for your concern.
Oh, sweet thing. Maybe the person who told you that there’s a type of dignity in keeping this shit to yourself didn’t mean to be an idiot, but…
You go ahead and scream and cry and scream some more. We’ve got some awfully big shoulders here.
I know I’ve told you this before and I hope you take it to heart: You are more than just your illness. Your illness does not define who you are. You are an intelligent, caring, beautiful person and you have strong people in your life who love you and want to be there for you. Don’t shut them out.
((((((((((HUGS x 1000))))))))))))
I am SOFA KING GLAD (in your words) that you just reached out. I have missed you! Without you to stop us, Charlene and I even cheated and snuck on reality Steve to see who Juan Pablo picks! WE NEED YOU!!!! I understand cooking a meal you can’t eat… It is so hard. I’m glad you came out from under the sheets. It is ok to do that a little… But not for too long! XXXOOOOOXXXOOOO