Better if not for the Weather

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Hi again! I must admit that even though I am feeling better since being released from the hospital, the weather is challenging me right now. In Ohio here, we went from 72 degrees int he morning yesterday, down to 21 overnight and snow. These transitions don’t do well on this body. 

As much as I hate to say it, the short term warm weather really zapped me and now my joints are aching, my fatigue level is through the roof and I feel like poo. I am hoping the weather decides to stay cold for a bit now. I mean, good grief, let me stabilize a bit before spring hits and I go through the wonderful season change (insert sarcasm here). 

How are you all holding up? Does the weather affect you as well? Thanks you all for hanging in there while I have been awol. I am making a concerted effort to get plugged in again and get busy with more information all the time. It is nice to get feedback and know that people are actually listening. You all rock!!

Call Me Mrs. Rip Van Winkle

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Call me ms van winkle
written on Nov. 7 th, 2012

Ok. I admit it. I have slept for about 38 hours. I missed the whole Election Day dramas. I do not even know who won. I will find out but wow!! You see, my cable was stopped so I have no tv, phone or Internet right now. It’s not looking good for the future either. I think I was overly optimistic about how far I could stretch a buck. Oh well, this will be ok. I could make this into a no tv thing for a year and blog about it. Yeah, now I have a plan!! He he he.

So I will be writing my blog on my phone and whenever I am in a wifi zone, I will upload it. No worries, the blog will go on!!

I am motivated to get this place in shape for winter. I have moved furniture and such but finally have a plan in mind that I think will work. I just need to attack this plan one thing at a time. Overdoing it causes days of sleep, as shown by the last day and a half! All I did was walk to the library to use their wifi. Ok, so it is 3/4 mile round trip. I get it. Lupus wasn’t happy. Well pooh on you lupus! I will continue to live my life no matter what you do!! I needed to sleep anyway. Lol.

Seriously though, I will miss my few shows I watched. I always dvr’d shows and when I had a chance I would watch them. There are only a few I really enjoyed. I can deal with it. Plus, I can focus on more spiritual things too!! This gives me more time for studying the bible and adjusting my life to be a better Christian! See, focus on positives!!

So, in this hiatus from electronic gadgets, I will still be posting. Just please bear with me as I try to adjust and remain focused on the positives of my life!! Thanks!!

Sleep and Sleep and More Good(?) Sleep

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Yup, it’s me again. I loved all your responses to the last post about sleeping! It truly does help knowing we are not alone in this battle we are in!

As I am writing this post, I have the overwhelming urge to go back to sleep! Again. Considering all the sleep I have had lately, it still surprises me that I am so fatigued. Yet, I made myself get out today and get a few things. By the time I got back home, I was totally wiped!

Now I am sitting here with my puddy tat in my lap, in the recliner, and will probably fall asleep once I sign off. At some point I truly would like a day with no fatigue or pain. Just one! Yeah, I know, pity party for one here. I just wish I could do the things I want or need to do!!! That being said, I am thankful to have another day of life and I really do appreciate it! Even on these bad days, I am thankful to know that at least I am here! There are others who would trade me the chance if they could.

I hope you are all well and happy today! I am up and down. I will survive this day (hopefully) and think about a better day tomorrow! Keep the comments coming! I love to read your comments. Please do not feel neglected if I do not respond to each of them. Some days it is hard enough just to post and if I missed replying to your comments, please know that I read each of them and when the energy is there, I respond. Just have had a bit of bad flaring so not all that “chatty” online. It really means a lot to me when you share because I know that I am not alone too!  Thanks to you all for your comments, encouragement and personal stories! ~Jen

Fatigue

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Fatigue is defined as the following:

fa·tigue

[fuh-teeg]  Show IPA noun, adjective, verb,-tigued, -ti·guing.

noun

1.

weariness from bodily or mental exertion.
2.

a cause of weariness; slow ordeal; exertion: the fatigue ofdriving for many hours.
3.

Physiology . temporary diminution of the irritability orfunctioning of organs, tissues, or cells after excessiveexertion or stimulation.
(from Dictionary.com)
This is the classic definition of fatigue. For those of us who have autoimmune diseases like lupus, fatigue carries another definition. Here is my attempt to describe OUR fatigue.
OUR FATIGUE
Many autoimmune patients experience a form of fatigue in the course of their disease process. It is quite different from the everyday fatigue most “normal” people experience from time to time. This fatigue can engulf you and hold you hostage from daily living. Yes, I know, that is a bit dramatic but truly, it is hard to put into words how we feel.
My fatigue is different from yours. I have days where I get out of bed (Yay me!) and go to the bathroom, only to get back into bed because I cannot do anything more. Yes, this is the real fatigue. It does not mean that I slept too long. I hate hearing that. People seem to think that our fatigue is like theirs and that if we were not so lazy sleeping so much we would be better. WRONG!!!!! 
If you seriously think I WANT to be in bed so much then you need to rethink your attitude. Believe me, I have mourned the loss of my abilities and I am trying to come out the other side. It can be very difficult when those around me seem to think I am making it up. I WANT to get up and participate in life!!! I WANT my old life back!!!
The fatigue I feel involves the overwhelming and complete exhaustion of my body. It is like I have run several marathons and cannot take another step. When it hits me, I literally HAVE to go to bed. No kidding. I cannot push through it. I cannot pass go or collect two hundred dollars. I HAVE to go to bed and sleep. 
I have been known to sleep for a lot of hours! I can wake up and get a drink of something then back to bed I go to sleep another several hours. What happens if I push through it you say? Well, eventually, sooner than later, I will be forced into sleeping. I will fall asleep in my chair or wherever I am. My body literally will shut me down. When that happens, it takes me longer to come out on the other side. It is important for me to listen to my body and its cues so I can avoid having this happen. 
In saying this I am not looking for pity. I am looking for empathy and understanding. I mean, I am not lazy! I have worked hard all my life and have had to mourn the losses of all the things I used to do. I applaud the things I can do and feel blessed for still being alive and kicking! So, if you see me out and about and happy, then know it is a good day for me and be happy! If you do not hear from me for some time, feel free to call me to check on what is happening. One phone call can make the difference in my mental status, just knowing someone cares enough to see how I am.
So, in conclusion, my fatigue is not a normal fatigue. It is all encompassing, head to toe fatigue that can put me in bed for days. Do not judge me and my fatigue. Do not belittle me or tell me to suck it up and get up. Just be supportive and care and that can make my whole day! It really is not much, don’t you think? 

hibernation

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It has begun yet again. It is that time of the year when I begin the staying indoor life and very little of the outdoors life that I enjoy so much. When the weather changes, it is a wondrous thing. Seasons are lovely things. I love it when spring begins, the pushing forth of new shoots of all types of plants. The greening of trees and grass. The feelings of life beginning anew. I love spring. It is the beginning of warmer days and cool nights. People begin to emerge from their winter hibernation. Thus, the title of this blog.

Hibernation is defined as (from Merriam Webster dictionary online):

1: to pass the winter in a torpid or resting state
2: to be or become inactive or dormant
 
I have begun my winter hibernation, sooner than I wanted to. You see, after our walk for lupus, and my trip to Kentucky. I ran completely and totally out of energy. Energy to function, to get out of bed, to eat, and to do anything more than sleep. Yes, I am quite good at sleeping lately. I could be an olympic sleeper these last few days.
 
In the interest of explaining this to those who are “normal”, I will try endeavor to equate this with something you would understand.  Have you ever had a bout with the flu where you feel awful and have no energy? You have aches and pains and all you want to do is burrow under the covers and sleep? That is similar to what I have been feeling. Not quite as bad, but similar.
 
I was wondering if any other of my lupus friends are feeling the same way. This time of year seems to do that for me. The cooler weather brings on the achiness in my joints. The good old arms and legs begin to feel like rubber and useless. At times, it feel like there is an elephant sitting on my limbs and whenever I move I have to move it as well. I have also heard it explained as walking in knee deep sand underwater. Both are apt descriptions.
 
So, my hibernation seems to have begun much earlier than I anticipated. Maybe this will pass and I will be out and about feeling improved sooner. I can hope and pray for that to happen. I would love to be surprised on this point! Hope to hear how you all are coping with this season change.  
 
 

well well well

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Today was my doctors visit. To start off, I had to have fasting bloodwork. I hate when that happens. I am not hungry until I hear that I cannot eat at a certain time. All of a sudden, I am ravenous. It is a mind trick, since my tummy does not need it but my mind is telling it that it does. Anyhoo, got the bloodwork done and we then discussed a few of the issues I am dealing with in regards to the flare I am in.

The first issue is my over/under sleeping. As many of you know I typically suffer from insomnia several times a week. When I am in pain, like now, it happens more often. Cruel joke, but that is what happens. On the other hand, I can also sleep around the clock at times as well. It is a cruel irony that when I need to function and would like to have that insomnia, I am usually in sleep mode and vice versa. It is to the point my hubs wanted me to mention it to the doctor.

You see, he is concerned that I am not normal and something is wrong. Hmmmm, guess what? I am not normal and something is wrong…I have lupus! After discussing this with doctor, I realized that the feelings of being wierd are really pretty normal for lupies. This whole sleep/not sleeping thing is typical for us lupies. It is not normal per se, as far as normal people go, but it is indeed quite normal for those of us with lupus. I knew this all along, but hubs would not shut up about it until I asked the doctor. So, I am a “normal” lupie. Not a “normal” person but a “normal” lupie.

I sometimes think others forget that I have lupus and expect things out of me that I cannot provide. I wish I had support for these issues, but it seems that lately they have been swept under the rug and “forgotten” and it has certainly not helped me at all. You see, when I need rest, it means I need rest. If I do not rest, then I will pay for it. If I rest, then the chances are that on the other side of the rest, I will feel better, not necessarily fully productive, but better.

I am also suffering from depression as well. When I bottle up these feelings of inadequacy and inability to function “normally” it makes me sicker, which makes me more depressed, which makes me sicker and so on. A vicious cycle gets set into motion and in the end, I pay a heavy price for it.

That being said, I have resolved to stand up for myself more and take frequent rest breaks if needed and to the devil with those who do not or will not understand. I have to look out for my health and since it seems at times I am the only one who is doing that, it is imperative that I stand up to those who belittle me or make me feel useless. I am striking a blow for others out there who deal with this as well. If I can do this, so can you! We deserve to be treated with dignity and respect. I am not the only adult int his household who can do the things I do, so when I can’t, then I will get help.

In the end, this journey is really getting me down. However, I am resolving this one issue once and for all. I cannot and will not be made to feel unworthy because I am not “normal”. I am sick, with a chronic incurable disease, and if you were ill, then you would be treated with dignity and respect. That is all I want too.

Okay, I am getting off my soapbox now and will move forward. This blog is such a great thing because it allows me to vent these feelings and helps to not internalize them more so that I get sicker. Thanks for all the support! I truly appreciate each and every one of you!

Who’s afraid of the big bad wolf?

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Some days I am! Today would be a perfect example… I am watching four of the grands, at different times of the day, and I am reduced to napping in between several times because of the wolf. Am I surprised? No. You see, last night, as I posted previously, I had begun to have pain, acute and chronic. It was a harbringer of the day today. Try as I might, the more I wanted to keep going, the more my body fought me to lay down. In the end I gave in and rested whenever I could. Tonight, I am going to post this blog, watch a couple of shows I have dvr’d and then off to bed.

My lupus friends out there will understand the above paragraph quite well, because most of us have had days like the one today.  It is my hope that a good nights sleep, coupled with the rest today, may find me feeling much improved tomorrow. Here’s to hoping!

In the meantime I will stop fighting my body and listen to it and succumb to the fatigue this once. Who knows? Tomorrow I may find the big bad wolf has passed me by! Somehow, even with hope, I doubt it. UGH!