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 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!!
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 is defined as the following:
[fuh-teeg] Show IPA noun, adjective, verb,-tigued, -ti·guing.
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):
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!
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!
Ignorance is defined as : the state or fact of being ignorant : lack of knowledge, education, or awareness. (Merriam-Webster dictionaary). Now to expound on this, let me state that in a normal world things are the way they are and in the world of lupus, things are not what they seem at all.
While I can excuse this lack of knowledge in some people, it is harder to do so in others who have been told the facts and have lived with them for years. In this instance, the ignorance is of their own choosing, their choice in the knowledge they have and choosing not to use it. Are you still with me here? In other words, if you have been told, shown and learned that lupus affects everyone differently, why would you all of a sudden expect someone with lupus to , for example, begin an exercise regimen during a particularly bad flare? Making the person feel inadequate because they have extreme fatigue and cannot keep up with their normal routine and have to take naps is not only ignorant, but can also be dangerous to their health if they do indeed try to appease your vision of “health”.
This is not to say that exercise is out of the question entirely, but, due to tha nature of the disease, some days just getting out of bed is all the exercise a lupus patient can deal with. To decide that the person is lazy and needs to work out more, is, in fact, ignorant. Let me explain this yet again, because apparently some of those out there have not heard or learned from the past and medical experts on this subject.
The Lupus Foundation of America states (in regards to rest and fatigue) the following:
Getting the proper amount of rest is extremely important for people with lupus, especially during periods of disease activity (flares). Damaged and inflamed muscles and joints require rest to heal. Rest is also vital in reducing fatigue. Although everyone has his or her own particular sleep requirements, at least seven hours of sleep a night is recommended for people with lupus. It is also important to be aware that too much sleep isn’t healthy, either. Spending all day in bed may make muscles weaker, which can contribute to feelings of fatigue. Napping during the day may be helpful and even necessary when lupus activity is causing a flare. Try to allow extra time in your daily schedule for rest.
This will be different for each person. When I am feeling good, I will do things, as I am able, and feel a sense of accomplishment. However, when I am in a flare, I do not need to be belittled or made to feel like the few things I do get done are not enough. This makes me feel worthless and can actually make the flare worse. Depression only hurts me, not helps me.
Here is a frequently asked question and answer from the LFA website:
I was diagnosed with systemic lupus. Are there any do’s or don’ts with regards to exercise?
Having lupus can make the demands of everyday life challenging. When lupus is active, symptoms of joint stiffness, pain, extreme fatigue, confusion, or depression can make even simple tasks difficult, and sometimes impossible. And, because you may not have any visible signs of disease, the people around you may not realize how much discomfort and pain you are experiencing, or they may not know that you are sick at all.
You should not ignore the limitations that come with this disease. But there are steps you can take to stay active with work, relationships, and events that enrich your life. These actions and strategies can lighten the burden of your illness and allow you to lead a life of accomplishment and achievement.
Just like everyone else, people with lupus need to exercise regularly or engage in some kind of movement, and most people with lupus can take part in some form of activity. All exercise plans should be discussed with your physician or exercise specialist in order to maximize results and minimize possible harm.
Activities such as walking, swimming, bicycling, low-impact aerobics, certain types of yoga, Pilates, stretching, or using an elliptical exercise machine will strengthen your bones and tone your muscles without aggravating inflamed joints, while also helping to lower the risk for developing osteoporosis. It’s also a good idea to vary the exercises, so that different muscle groups all get a regular workout.
If you are experiencing swollen joints or muscle pain, you should avoid or at least limit activities that may be demanding on joints and muscles, such as jogging, weightlifting, or high-impact aerobics.
If you find that you tire easily when you exercise, you should pace yourself. The most important thing to remember is to not give up exercising, as muscles that are not used will quickly become weak.
Regular exercise and even simple low-impact movement will:
- reduce or minimize stress
- help to keep your heart healthy
- improve muscle stiffness
- increase muscle strength
- help prevent osteoporosis
- increase your range of motion
So, while exercise is wonderful, each patient needs to know their limitations and those around them should respect that. As I stated before, some days just getting out of bed is a major accomplishment and on others, things can be as near normal as other people. When you are first diagnosed, learning these limitations takes time and learning to “listen” to your body. After many years of living with lupus, you are more aware of your limits and able to gauge how best to handle them.
I guess that is why I am so upset. I have had this disease for many years now, and I have coped with the challenges it brings. I have dealt with the ignorance of others, many of them family members, who think I am just being lazy and that sort of thing. However, in my own body, I have this war, that rages daily. Right now it is roaring out loud, making me miserable and extremely tired. Along with that I am grumpy too. Sorry if that offends you. Sorry if you think you know what is best for me. Sorry you will not listen or learn so you can show me the respect I deserve and the assistance I need. Most of all, I am sorry that you choose to be ignorant.
Thanks for letting me rant… sometimes it help getting it out.
Ok, so I admit it, lately I have not been blogging. However, the reason are many and also why I needed to be blogging again… a paradox but true. You see, I am in a flare and it has been particularly ugly. That being said, I have also been on steroids again to treat it.
I have been feeling pretty bad. Even with prednisone. No matter what I am taking. It sucks. Big time.
This flare is making me miserable and no getting away from it, it is a bad one for me. I cannot move at times and I lay down and sleep at all times of the day. I am having pain in my joints so bad I cry. I hurt when I drive, my ankle joint hurts. I really have downplayed it but this is a bad one. Add the misery of this heat and humidity, and I feel like never getting out at all.
Many of my fellow lupies have been having issues too, so I am not alone. This disease will not win!It can take my life, but not the living of it!
I know, I am complaining again, but if you felt like I do, you would be crying I tell you! Normal people have no clue how painful it can be just to get up and walk to the bathroom. Simple acts, like getting in and out of a car can bring excrutiating pain in the joints and therefore, are not to be done unless absolutely needed. Fingers throb in pain from the act of typing. The headaches from the prednisone tapering off are horrible! Now, add to that, having to try to act like you are not in pain, and you have my life.
My family is supportive in so many ways. My sons seem to cope better than my daughter, but they get it, all of them. Some days their mom is out and about and having a great day, and other days, you cannot get me out the door. Plans can be made, but only with the disclaimer that I may not be able to do them when they arrive.
I have to try to keep all the doctor appointments in line and make them but if they are not on my calendar, I forget about them. The memory is having issues, not like alzheimers, but all of my memroy, sometimes, odd bits will be forgotten, then reappeaar again. No rhyme or reeason. I hope the neurologist will get to the bottom of it. I have my emg this week, oh joy… and of course, the moving. Gee, wonder why I am so sick?
I am sorry if this is negative, but it is truthful and if I am not truthful, then I am lying to myself.
The bright spots in my life are my grandchildren. They give me a reason to hope, to believe, and to live. I am blessed to have them! I am thankful to Jehovah for them every day. My friends are another of my blessings. I have some outstanding people in my life who help me in so many little ways that they may not even be aware of doing it. They are my heroes and keep me fighting each and every day.
I guess I hope that if someone reads this and is one of the “normals” or people without lupus, they would see that life in our shoes is not pretty, or without substantial pain, but it is lived despite these things. I used to like helping others when I was normal, now I am thankful for those around me who give me help when I need it! I may look like I am not sick, but the war inside my body rages on and it is up to me to decide to have a good attitude or not. I cannot control the disease, however, I cannot let it control me. Yes, it hurts, yes, it is hard to live with, but I refuse to let it win!
I seem to be a little flighty tonight, but that is also what it can do to you. It is called brain fog, and it is a medical condition associated with lupus. This rapering down on prednisone is rough too. Forget about my fat “moon” face and the unwanted weight gain, the fact that the pain returns as you taper down is enough to make you cry! Then the mood swings from the drugs is there as well. It can be up and down and all around and if this is rambling, you can see how it can affect us! It sucks. Lupus sucks.
For today, I am choosing to be happy, and smiling, and loving. If I try hard enough, maybe the pain will give me a few little breaks and I can feel as normal as I can for a few minutes! If not, I will smile through it and wait until I see my neurologist and rheumatologist this week and see what they think… I will keep you updated!