Having a day...

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Ellie27
Regular Member


Date Joined Oct 2008
Total Posts : 119
   Posted 7/22/2010 9:22 PM (GMT -7)   
I'm having a day where I'm feeling incredibly emotionally drained. Just having my summer blues..it happens to me about 2-3 times every summer thus far since I've been diagnosed. I do good most days, but eventually I get tired. I start to feel trapped and frustrated and just angry..which is where I'm at today. Just tired of the constant sunscreen, and hats, long sleeves, and trying to go out in the early morning and later in the evening. I don't feel free. I'm sure that I'll have a fresh perspective tomorrow, but excuse me while I just let it out. I'm a bit weary. Anyone else know the feeling from being vigilant about sun protectiveness, and just coming to a point where you know that if you stay home and miss out one more time you're going to get depressed, so you go to prevent that from happening, knowing full well that you might pay the price physically. That is what I did yesterday. I went out at 6pm, dressed with long sleeves, a hat, sunscreen, etc...but in the bright bright sun nonetheless and participated in a 20 min fun walk/run with the running room. Years ago I would've been running it, but I considered myself blessed to be able to walk it on such a beautiful day...today I woke up exhausted. I knew that I probably would...but I still feel trapped. I've kept my spirits up fairly well, but I actually was talking on the phone today to a guy to do with medical care, and ended up bawling on the phone. Just one of those days over all. I'm sure most, if not all of you, have had a day from time to time. Tomorrow's a fresh I know, but today's been emotionally hard. I need to grieve the freedom I've lost in just going for a walk in the middle of the day and not paying for it..ya know? Tomorrow I'm going searching for a sun umbrella to bring out with me so that I can go with my friends..we'll see how that goes. Thanks for listening everyone. Just needed to share with people who really get it. Most people around will try to say, I know what it's like...but they really don't. How could they without having lupus? or another chronic disease...it just kinda rubs it in. Anyways, that's more "whining" than I usually do, so please forgive me...I just needed to get it out. I hope you are all having a better emotional day than I am.

-Ellie
It is God that gives me the strength to carry on in the valleys of life and the wings to fly to the mountain tops

Dx: Diagnosed with Epilepsy Jan 2005, SLE July 2007, since then, Raynauds, Alopetia Areta, Vasculitis, discoid lesions, Endemetriosis March 2008. Meds: Tegretol, Imuran, Plaquenil, quite often Flurbiprofen and Rabeprezole, as well as various other supplements/vitamins.


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1547
   Posted 7/23/2010 5:06 AM (GMT -7)   
Hi Ellie. I worked for the federal bureau of prisons for 11 years and I'm absolutely certain we are prisoners to lupus. That trapped feeling you describe. Inmates can't go to the rec yard when they please, they must wear certain clothes, and Lord knows they get weary.
Sounds a bit like us.
 
I'm very proud of you for taking that 20 min walk even though you had to pay for it. I think we all do more than we should on occasion knowing we will flare. We try to grab every bit of a normal life we can. BTW I've also bawled on the phone to a nurse. You're not alone Sweetie and vent all you want. We are here to listen. Love, Butterflake
Systemic Lupus ('05), depression, fibro, sjogrens, cns issues, diabetes, gerd, hypertension, colitis, stage 1 kidney disease. Cellcept and lots of other meds.  Donna 


southerndiva
Regular Member


Date Joined Apr 2009
Total Posts : 122
   Posted 7/23/2010 9:02 AM (GMT -7)   
Hey there Ellie,
Wow can I relate.  Seems like in the past week I've had many of those feelings of either being depressed, pissed off, anxious and just plain tired of it all.  I have had all these intentions of getting things done around the house and then I wake up with positive feelings but the body doesn't allow me to do what the mind wants to.  I'm so tired of it all.  It's hard to explain it to anyone else who has never experienced what we do on a daily basis.  I'm sure our weather hasn't been helping.  I live in Mississippi and we have had the hottest summer since I moved here 5 years ago and it's just zapping every bit of strength out of me.  I've been trying to do some indoor exercising to build up some physical strength in what is now a body of flab.  I'm hoping it will help with the mood swings.  Anyways, I hear you loud and clear and hope that tomorrow is a better day for all of us. 
Hugs and Angels,
Lynnette

challenged nurse
Regular Member


Date Joined May 2010
Total Posts : 69
   Posted 7/23/2010 5:34 PM (GMT -7)   
Lynnette, I'm from Mississippi too. What part are you from?
DX: Lupus(UCTD), Asthma, Mitral Valve Prolapse, Heart Murmur, Anemia, Vitamin D def., B12 def, Hypertension r/t lupus, TIA, muscle weakness, numbness, tingling, headaches, night and day sweats and IBS.

Meds: Imuran 100mg, Prednisone 60mg, drisdol 50,000 units weekly, b12 injections monthly, Protonix, Zantac, Tramadol 4 times daily prn, Align, Kapidex, Amitza, Miralax, Vaseretic/HCTZ Aspirin.

Allergies: Cipro and Bactrim
I can do all things through Christ that strengthens me.


southerndiva
Regular Member


Date Joined Apr 2009
Total Posts : 122
   Posted 7/24/2010 9:02 AM (GMT -7)   
Hey Challenged,
I live in Brandon by Jackson.  Woke up this morning and I'm flaring a little bit, feeling more stiff.  I think it must be the incoming tropical storm Bonnie.  How about you?  Lynnette

challenged nurse
Regular Member


Date Joined May 2010
Total Posts : 69
   Posted 7/24/2010 9:38 AM (GMT -7)   
I live in Ellisville. I have a sister that lives in Brandon and I come up there a lot. The weather has me extremely tired and weak. I am having some joint pain and neck stiffness and HA. (It's a small world).
DX: Lupus(UCTD), Asthma, Mitral Valve Prolapse, Heart Murmur, Anemia, Vitamin D def., B12 def, Hypertension r/t lupus, TIA, muscle weakness, numbness, tingling, headaches, night and day sweats and IBS.

Meds: Imuran 100mg, Prednisone 60mg, drisdol 50,000 units weekly, b12 injections monthly, Protonix, Zantac, Tramadol 4 times daily prn, Align, Kapidex, Amitza, Miralax, Vaseretic/HCTZ Aspirin.

Allergies: Cipro and Bactrim
I can do all things through Christ that strengthens me.


Wolf92
New Member


Date Joined Jul 2010
Total Posts : 9
   Posted 7/25/2010 7:22 PM (GMT -7)   
It's ok to vent every now & then we go through alot on a daily basis,& it is nice being able to tell pple who actually get it that's the reason I started this chat yesterday. I was just hvin 1 of those days I had no control over any of my emotions & I wanted to cry for everything & for things that dnt usually ever effect me. I say dnt ever feel bad for feeling not like yourself cause as we all know if there's one thing about this illness we know it's not very predictable & it can be frustrating not hvin control over your own body sometimes. 

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 342
   Posted 7/26/2010 7:44 AM (GMT -7)   
Hi Ellie,

I'm sorry to hear you are down, but wanted you to know I can totally relate! I get in these moods as well, as a matter of fact I'm in one right now. As I just posted I wanted so badly to get out and be part of the party that was held at my home on Saturday I allowed myself to over do it and now I'm paying the price and have my own pitty party. While I can accept the pain, fatigue and just about anything that goes along with lupus I just don't think I will ever accept not being able to get out and do the things I used to do, especially this time of year.
Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis

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