I've talked to and emailed with some Addison's people lately and they're under the impression that I'm always perky and cheerful. Anyone who knows me in person knows this is NOT true. I'm often grumpy, completely politically incorrect and inflexible about doing things late in the evening or inflexible in general! Here I've given the false impression that "life's awesome all the time!" Just the other day my poor son said to me, "I wish you weren't hurt, you're very grumpy when you're hurt."
I can't afford to complain too much here in a public forum because the world can see it, clients can see it and family can see it. Who the hell wants to hear me complain?
If you're still reading, you DO want to hear me complain. The only way I've been able to cope for the last two months, keep working and do my volunteering has been to stop doing much house work, go to bed around 7 or 8 pm, take long baths, not do paperwork, skip showers (my hairdresser would be so proud to read this, she's been telling me to wash my hair less! Right Erika?), be more efficient with my responsibilities and not return emails. I've been a horror to be around. Always exhausted, crying, asking for things to be retrieved for me, relying on my husband and son to help me do my job, crying more, crying again, drinking too much booze.
I think I've been chronically underreplaced with my Hydrocortisone. Besides being exhausted, I don't feel like eating, even don't want to eat chocolate. I take 25 mg of HC a day and I'm hesitant to take more but this chronic stomachache is an indication that I need more HC. I had to cut out florinef because my BP was high for me 150/90. Sometimes I hate having to balance my hormones all by myself. Why can't my body do it for me? I was feeling like my thyroid was screwy, maybe it wasn't maybe it was just that I was walking around on a broken hip for months*? When I feel well, I don't mind the meds. When I feel bad and don't know what's what or when I blatantly ignore my undermedication symptoms, I freaking hate all this balancing and figuring and asking for advice. Luckily, no matter what's going on, I can count on being able to sleep. If I didn't have that, I would go bonkers. Actually the hip hurt so bad for about 6 weeks and I was having difficulty sleeping. I did think I might go bonkers. My family probably thought they were going to go bonkers too. I was prone to spontaneous outbursts of yelling, crying and bad language.
*I'm figuring the stress fracture started on May 28, 2009 during the Pocatello 50. I finally submitted to the MRI on December 29, 2009 and was diagnosed with the stress fracture that day. Pain went from an annoying ache in May to near inability to walk in early December. I purchased crutches weeks prior to my diagnosis, that's how much it hurt!
I'm going to shut up now. I've complained enough. I'm feeling well today. I'm feeling energetic and I'm not grumpy and crying or yelling at anyone, I'd better make the best of feeling good!!!
Many, many thanks to my husband for cooking and cleaning up the kitchen and for taking up my slack with my business and around the house. Thanks to my son for being kind to me when I wasn't kind to him and for helping me work. Thanks to all of my friends (Milissa, Joanne and Kim here at home) and all of my cyber friends for sticking with me and accepting me and my grumpiness. Thanks to my clients for not giving me the boot when I wasn't able to do much without help for the last couple of weeks.
Thanks to everyone for their kindness and support, it's meant the world to me!
I'm empathising so strongly with your blog post and really wish we didn't live so damn far away from each other! You do what you need to do to get by, and know that we still think you're amazing even if you're less than the joy fairy herself!
ReplyDeletePip,
ReplyDeleteDo you have a web cam, maybe we could skype or do some webcam thingy? I think I've got Windows something er other on my computer.
I'd love to "meet" you!
"joy fairy" LOL!
XO
Dusty
Joy Fairy! Nice one, Pip.
ReplyDeleteYou are entitled to complain now and again. I've always taken your "quiet" moments to be down time (or downer time for our sorry lot). Crankiness is a feature of AD.
My wife has developed a new tolerance mechanism lately. She calls me "Carmichael" when I'm out of sorts. As in, "who am I talking to now? Carmichael?" Which usually ends up with me laughing at myself instead of getting in a pissing contest with her. That's what I get for marrying a Psych major!
Dusty, You do not ALWAYS have to be the strong one. It is okay to lean on your friends. I am here AND I have Skype!
ReplyDeletei AM DOING SOMETHING WRONG. mY NAME NEVER PRINTS, BUT I DO HAVE SKYPE--LINDA
ReplyDeleteMike, no wonder you've been married so long, you've got some great coping mechanisms!
ReplyDeleteLinda & Pip, I wonder if we could do a virtual room where we could all meet with our webcams? I will put it on a list and look into it. That would be so fun!!
:) Dusty
Dusty - I know exactly how you feel. When I feel well I don't mind the meds either. When I don't feel well - I'm confused and worried and hate having to play the balancing act....
ReplyDeleteHere's hoping you feel better really soon!!
ashley
Thanks for posting this, Dusty. I am always so inspired by what you are able to do having Addison's. But it is also nice to hear you have the same feelings I have during the frustrating, irritating times of not feeling well. I hate that I cannot do much in the evening and then when I do it almost invariable leads to not feeling well. Then I get doubly frustrated feeling like no one understands. I am glad to know you do. You are very inspiring, grumpiness and all!!
ReplyDeleteI have to say I totally understand and can relate to your post on grumpy. I feel the same way when not feeling well. I get all confused and trying to manage meds is even more difficult. And you are right, no wants to hear us complain and it's hard not to feel like we need someone to listen to us vent/cry and not judge us. Thanks for letting us know we are really all the same :) Not odd.....just human
ReplyDeleteThanks everyone! I'm glad I can whine and many of you know EXACTLY what I'm whining about. Thanks for listening!
ReplyDeleteDusty
Hey guys, im back! wrote to you about a year ago. Joined the AD club in '07. Was just coming aroung and got side tracked with a little cancer. 5 surg. and no boobs later. Im raring to go. Spent to much time in bed last year, so im sporting an extra 20 lbs... but i"ll get it off. well... right after i get my cast off from falling up the stairs and braking my hand. HAHAAHA! Seriously!Ya just gotta laugh.
ReplyDeleteStill tired in Michigan, Julie
Hey Julie,
ReplyDeleteCome join us at the forum: www.addisonssupport.com
You've been going through a lot!
:) Dusty
Dusty, I'm making my way thru your posts & this one struck home. I guess we sometimes try too much to paste on a smile, then we get kind of messed up cause it's not always the right thing to do. Sometimes, sharing the crap is needed - for you and for us - having Addison's is so unique - You are not alone. After almost ten years of me not knowing anyone else with Addison's - I am not alone either. Thank you for being you. Your friend, Lana (I still don't know how to sign other than anonymously) so here's my info: www.findinglana.blogspot.com
ReplyDelete