Tired & Getting Depressed

[Auntie TooToo]

Friday, 8/30 at 1:36 am ... day 8 off work & feeling depressed. Yesterday not a good day ~ increased inflammation & joint pain, epigastric pain w/nausea due to ALL THESE MEDS! Never in my life did I think that I would ever be on so many meds ... between the ones I take for normal health issues , with the onslaught of this wonderful WG's and the lung involvement, the additional meds give me a GRAND TOTAL OF 17 PRESCRIPTIONS!
Before my grandmothers' death years ago, I assisted my mother in taking care of her and dealing with her meds I remember thinking [I]"God, please don't ever let me be in this position". Laying in dark room since 11 pm tossing/turning and getting more irritated by the minute! Just need to reach out to someone who I know understands. Thank you all for listening to my ranting and it is my hope that we all have a blessed day when the sun rises today.

[mishb]

Hi Auntie,

I hope you managed to get some sleep in the wee hours of the morning.
I'm sorry things have got so bad for you.

I totally agree about all of the pills - I even told myself that I would never be on bp tablets, but that didn't last :razz:
It never entered my mind that I would be on anything crazy, funky and out of this world.

I'm not sure what time of day it is for you there - it is 10pm here on a Friday night.

I'll send some crazy, happy thoughts your way to try and help you through the day

[Auntie TooToo]

Michelle, thank you for your kind words ... It is now 7:05 am on Friday morning here in Southeast Texas and despite all my best intentions, unfortunately was never able to get any rest last night. :crying: Tried everything I could ... long hot shower, ice packs, soothing sounds of thunder storms [which in my better days i got my best sleep during hurricanes]. :rolleyes1:

I'm expecting a call back from pulmonary this am regarding ct chest scan they are scheduling ... not sure if some of current flare w/respiratory problems due to WG & treatment or secondary lung infection. Anyway, thanks again for your kindness.

[mishb]

Aww, sounds like you are operating on just one cylinder at the moment :sad:
I hope it doesn't continue.......and that you can get some rest throughout the day

- just a few quick nana (auntie) naps should do the job :thumbsup:

[Dirty Don]

Someone needs some spoons...so, I'm feeling pretty good today, pinches self, so Auntie TooToo, here are my spoons for today...wishing you well and better days ahead...just gotta be patient and steadfast in the face of angst and concern...best to you!

[Auntie TooToo]

:sad: Actually, I feel like my cylinder is just about empty! Between the symptoms of WG and effects of meds/prednisone, I feel like I'm going nuts! No worries ... I will get through this ... my parents didn't raise no wimpy woman! I WILL SURVIVE

When I get to that point, I have some relaxing recorded material that I play and listen to ... if nothing else, it calms my spirit and emotions.

[drz]

:sad: Actually, I feel like my cylinder is just about empty! Between the symptoms of WG and effects of meds/prednisone, I feel like I'm going nuts! No worries ... I will get through this ... my parents didn't raise no wimpy woman! I WILL SURVIVE

When I get to that point, I have some relaxing recorded material that I play and listen to ... if nothing else, it calms my spirit and emotions.

Been there and done that too. Some times in wee hours of the night or early morning when sleep is elusive I get up and journal about my feelings or read posts here on forum or do some other kind of reading to distract me till I get tired enough to go sleep. Other things that help me often are going for a short walk or if not possible just sitting at window or outside and watching the birds, listening to music, or trying to watch a good movie on TV. I have had a couple days too recently where I feel sick and tired of being sick and tired and all my medical appointments and how problems just seem to keep coming. It is usually the culmination of several little irritants that seem to be the straw that breaks the camels back for me. Insurance foul ups and billing errors have been big problem lately. Then I have to remind myself how lucky I am to still be here to deal with all these petty grievances for the past three years. If I look back to my initial treatment all these problems and issues really seem so trivial so then I can get back to dealing with them to try make some of them better. It takes time and energy that I often feel I don't have so then I need to go borrow some "spoons" from someone else or wait for battery to recharge. Yep, we understand, some days only too well!

[Auntie TooToo]

Dearest drz .... thank you for understanding

[Alysia]

Hi Auntie,
it might be the pred disturbing your sleep.
it is a kind of paradox when tring to go to sleep: the more you try intentionally to sleep, the more you become awake. there are moments you should "ignore yourself" and not "notice" if sleep is coming, otherwise it runs away. the best thing to do is to search for something to think about and not "watch yourself" and check if you are sleeping. even to decide that you are not sleeping now, just thinking about some issue.
and af course venting here bring huge relief :thumbsup:

[Auntie TooToo]

I totally agree with you Alysia ... that is the major factor about going on sustained Prednisone that I dreaded. Throughout the last couple of years, my respiratory systems culminated to a critical state thus leading to pulmonary md to look at WG in first place when wasn't responding to treatments. Upon getting back positive blood work, referral to rheumy, subsequent biopsy confirmation, I was dismayed to say the least to learn that treatment consisted of [as rheumy described] sustained mega doses of prednisone. Throughout these respiratory "years", I was almost always on this wonder drug but not sustained like this and I hated it then and could never wait to finish the prescription; but I was on/off on a monthly basis nothing like this. Needless to say, I kinda knew what to expect but not really! I am trying really hard not to focus on getting sleep as I know that only seems to irritate me. And yes, when I can't stand it anymore being able to "vent" on this forum is a great aid ... to be able to let go of the irritations of the day and know that those who read my words will not think less of me, not think that I am being a baby because that is one thing that I am not! I think that is one of the things about this WG that is bothering me, I am single and have my mother [she is 70] living with me since father died years ago. It's not that she needs taking care of, but I have always done all the shopping, housework [gardening is her thang] and she took care of outside. Now with all this WG and all the effects of my case, I fine myself struggling not just to maintain my secular work but my household responsibilities so that she doesn't have so much on her. My mom has her own health issues, although nothing in comparison for which I am eternally greatful [she deals with hbp, diverticulitis and arthritis - that't it], but to see my issues currently affecting her is breaking my heart and there is not alot I can do about it. She is stressing/worrying so about me, won't let me even try to do too much around house [due to resp. issues experiencing right now ... ? treatment related or lung infection or combo] and it is beginning to affect her diverticulitis which is also a condition aggravated by stress. Anyway, I have expressed my feeling/concerns enough this morning .... Thanks to a dear friend who gave me some Roman Chamomille essential oil which is a natural sleep aid which I coated my chest with and just breathed in around midnight when I finally began to slow down from prednisone rush and turned on some thunderstorm sounds, I did manage to get almost 3 hours of sustained sleep, but hey I will take what I can get.:rolleyes1:

[Alysia]

you are not alone anymore. you have us with you :hug1:

[Auntie TooToo]

All i can say at this moment is two words .... Thank you!

[mishb]

I'm glad you finally got some sleep Auntie.

Hey, there's nothing stopping you from napping during the day.......put on a really bad movie and just nod off :thumbsup:

[Auntie TooToo]

Michelle, do you have a camera looking at me during the day? :ohmy:
I get a few 10-15 minute naps throughout the day .... I'm sure that contribute's as well to not sleeping at night, but what is a person supposed to do right? I just so miss those days when I went to bed after working all day and went right to sleep for 8 hours waking up well rested .... boy has that been many many many moons ago!