I think this is the number one comment that drives me nuts.It must be nice to lay in bed all day…to stay in bed…..and things to that effect. If you are just lazying about and can get up and down whenever you want without the slightest hindrance…..maybe. If you have no problem being upright when you need to move because you are getting sore from laying in the same position…..maybe.If that is all you are planning on doing and you are pushing things aside because you WANT to …..maybe.
I really struggle with the whole resting part of chronic illness. I know I need to. I know my flares would be less. I just have never been very good at doing nothing. I struggled for awhile trying to balance not working , saving energy to parent after school and having a life. If I stay home and rest, it is really hard to get up and moving after getting the kid because I expelled more energy than I realized trying to rest. I am home so I should be doing dishes, or laundry, or getting the kid’s room organized again. Maybe I could reorganize the pantry. I could even sit in a chair for most of it. For the record that is not resting. I can’t sleep during the day if I want to be able to sleep at night, so a nap is out of the question.
When I do force myself to take a rest day and stay in bed. It helps. Imagine that. It may take me eighteen hours or so of resting to be able to function again but I can function again! The trick is not to go crazy and clean the house and do to much and exhaust myself all over again. This is where pacing comes in , another area that I am not so good at.
It is a constant battle though to keep myself in bed because I know thats what my body needs. The guilt starts to eat at you that the house is falling apart. That you can’t keep up the house because your body requires so much rest. If I did clean the house and push myself then I often have nothing left to do anything with my daughter after school, again the guilt.
When I say I need to stay in bed all day, it is not a luxury. It is a requirement. It is not one that I admit to and concede to often. When I do it is serious. I have probably pushed myself for too many days in a row. I am better at forcing myself to take these rest times or days. I still have progress to be made here. I still need to let go of the guilt. I still need to stop while I am ahead. When people say this to me I struggle to be nonchalant about it. I try to just shrug it off and not let them know how hard it is.
I had it in my mind I was going to get a really good walk in. I had it set in my mind a four miles walk. There was somewhat of a change of plans with our friends. Instead of walking we were going to take a bike ride to the park with the kids. Four kids, two adults. The weather cooperated and we took the kids for a bike ride. The kids rode their bikes. I walked behind to bring up the rear. The first three quarters of a mile were really good. It was a pretty good pace to keep up with.
Then we got to the park. There was some resting then we walked some more. Mostly it was aimless wandering. We ended up at the fitness trail. When we were done with the trail our friend was there was the van. The kids were done. There was no riding back or even walking back for them. All told it was three miles. The only problem I had with it was it was not at a consistent pace. It was good enough for now.
We went back to their house and had lunch. I ran to Target to get Easter Basket stuff and the kid watched a movie with the other girls.
We came back to the house and both the kid and I crashed for two hours. We mainly just laid down and watched tv. We both needed the down time.
So then it was off to pick up my husband from work. It was of course now raining. We had some errands to run but while my husband did his errands the kid and I walked around Ross. Then we swung by McDonalds for dinner for the husband, I got a carmel Frappe. We dropped him off. There was still an hour and half before I could take the kid to movie night at Tae Kwon Do. It was pointless to go all the way across town back to the house only to come back to where we were for movie night. We wandered around Books A Million. Really what could be more perfect to kill an hour and half on a rainy day? Nothing that’s what.
Finally it was time. I could drop her off. They would feed her dinner and a movie, I could pick her up and then it would be bedtime. So Now I had three hours on my hands with no husband and no kid. What to do what to do. Almost on auto pilot I was driving home. I didn’t really want to go home though. Not really. I had pent up anxiety left to walk out. I knew I did. I decided I was going to get that walk in after all. I started the runkeeper app and my audible book. I was just going to walk until I was ready to turn around. Not look at how far I have gone. Yeah right. I don’t even know who this competitive person is anymore. Now a good walk is at least two miles. If you have been following me since the beginning you know this has been a slow and steady process. One that has taken me almost a year and half to get to where I am in walking. Half a mile in and I was just hitting my stride. I couldn’t turn around now. I made it to 1.15 miles. Turned around and started back. I was making excellent time. I have now programmed the runkeeper app that my target range is 1 mile in twenty minutes. There is a glitch in the system and before I have even been walking twenty minutes it starts telling me I am behind my Target pace. It irritates me but I have noticed I keep a better pace so for the time being it is staying that way.
Stopped at the little bridge to tie my shoe…almost screamed.
Then realized he was just a baby still.
Afterwards. I am almost done with my audible book.I got in a two and half mile walk. I felt satisfied and there was no pent up anxiety left. Of course my joints in my hips knees ankles even my feet joints are all incredibly pissed off with me. Thats okay. They can be pissed off at me. The less I walk the more I hurt. So I walk. I walk even when I don’t want to walk.
Now that the verbal diarreaha is out of my head I feel maybe I can actually relax the last hour I have by myself!
I have been told i complain a lot. I agree. I do tend to verbalize what I don’t like or don’t want to do. However what the social media world and even some friends, don’t see is, I often complain then get up and do the THING I was just complaining about.
It is like once it is out of my mouth, whether verbal or print doesn’t matter, I have to fix it now. Fix it by doing what I was just complaining about. If It stays in my head and I am just like I really really don’t want to do this and its pointless and on and on and on, that is one thing. Once even one other person knows I am complaining about it. I have to do it.
Can I do things without complaining? I am sure I do. In fact I know I do. This is just one of the ways i have learned that I can push past my fatigue. I hate how tired and fatigued I am most days. No I don’t even think hate is a strong enough word. I despise it. I couldn’t tell you when it happened to dawn on me this little trick.
It was like one day I just had word diarrhea and got it all out and then was like. ….OMG That is disgusting I am going to go do it right now. Somewhere there was a light bulb that went off that said…this is the ticket.
I can’t tell you how often I use it, probably at least once an hour. at least.
That is the reasoning behind some of my posts on Facebook. Its a self motivator for me. If others care to join in and moan that is great too. I always like knowing I am not alone in despising whatever I am being forced to do. Grocery shopping , errands, housecleaning…they all pretty much suck.
Knowing we are not alone and we can complain to each other…..thats what my aim is.
I can not stress this enough. It happens often enough that I am talking with another person who has chronic conditions and we get to the subject of medications. This is including supplements and herbal supplements. Nothing irks me more than people who A. don’t know what they are taking or B. Don’t know why they are taking it or C. Tell me that a medication does not work for such and such because of personal experience.There is one thing I have found that chronic illness/pain patients like to discuss it is medication , what works and what doesn’t. Keep in mind when you have these discussions that each person is different. At the very base we are speaking about chemical reactions inside the body. The conditions are not going to be the same for everyone.
You don’t know what you are taking? Seriously? It doesn’t seem the least bit important to you that you know what you are putting in your body? What the side effects are? What possible interactions there are? The reasoning well my doctor prescribed it does not hold water for me. I have seen and been on the receiving end of doctors who did not really listen and prescribed the wrong medicine. To be fair, sometimes it is the patient who has not clearly explained the symptoms or hasn’t told them they are on other medications. I know brain fog can be thick, so write down your meds. Keep it in your wallet. I get that we can’t always name every medication we are on off the top of our heads. I can’t always do that. I inevitably leave one or two or more off. I keep a list in my wallet as does my husband.
Then there are those who know what they are taking but not why they are taking it. This seems just as dangerous to me. There are some medications that do only one thing, but there are more that can treat multiple things. This is especially true when it comes to mental health medications. Some can treat both anxiety and depression. Some treat only anxiety. Some treat only depression. It is important to know why you are taking one medication over another one. If I am suffering from severe depression chances are ativan and xanax are not really going to help me because they are geared more heavily towards anxiety. Often though when you have depression you need something that also treats anxiety and visa versa. Research your medications. Sometimes I have to go back and look up medications I am on,because I don’t remember what exactly they are treating. Often times when you have multiple chronic illnesses one medication will cover multiple issues. Which makes knowing why you are taking it even more important.
Last is the people that state what a medication does purely from their personal experience with it. Often this is accompanied by well it won’t work for that. Actually sometimes you do take a medication for reasons other than what it was manufactured to cover. Medications that work for me for certain things may not work for you for the same things. We both may have issues with water retention but take different medications. It does not mean one of our doctors is wrong. It means that our body didn’t respond to that particular medication or that my water retention stems from a different cause than yours. Although commonly I find this directed more at mental health medications, again.
This is not a knowledge that I walked into chronic illness having. It has been something I have developed between being bounced from doctor to doctor, being told one thing and then another. I finally got to the point that I would research the symptoms and the medications that could be prescribed. This results in me walking into an appt with an idea of what I want prescribed, if anything, and why. I use a variety of sites for this research and go from there, not taking one source as being the only truth. Sometimes I run into sites that I just don’t understand what they are saying. Skip that one and go to the next site. Google will give you lots to choose from.
Like I said I can’t stress this enough, Know what you are taking and why. Read the pamphlets that the pharmacy gives you if nothing else!
I really hate getting blood work done. I have picky veins. The left arm is so scarred that it is extremely hard to get blood from it at this point. The right arm is a bit better , but you must use a butterfly needle.
So even though I know its important, I still drag my feet. I also almost always have to fast. That is hard when you have insomononononmia. I don’t eat cereal most mornings. Unless you count midnight, one am or two am as morning. I wake up and it is impossible to go back to sleep until I have eaten something. So fasting…not so much fun.
Today it took about twenty five minutes because some of the codes had changed and then there is always the fun of actually getting the blood. I used to be very phobic of needles. I still can’t watch them put it in, but now I can sometimes watch the blood fill the vials. Two sticks, six vials of blood, twenty five minutes…..this is why I dread blood work. What a way to start a day! The only way to survive this kind of thing is a sense of humor. The tech and nurse at this lab also have a good sense of humor. We cracked jokes and made the best of the situation. We joked that we needed an ultrasound to find my veins.
At least today is Frozen Yogurt Friday. I think I will be treating myself to extra hot fudge and maybe even some whipped cream on mine today.
Serenity : Calm : Serene : Peaceful : Composure : Tranquil
In the chaos of the everyday errands and responsibilities, its important to remember the little things
These are things that brought me Serenity this past week.
These three together……….
Princess P….. I can’t believe she is almost a year old already…Seems like I was just blogging about her birth.
Some new friends I met on my walks.. Frank the Heron, and Bob the alligator.
Hearing little boy squish’s heartbeat!!! I truly love that sound.. There is nothing sweeter than those sounds!
Oh and Snickerdoodle is going to be a big sister!
Can you believe my snickerdoodle is so big already!!!!
So then there was Frozen yogurt Friday and Orange Ice cream!!!! So much orange Ice cream….now I want some again.
This kid.. She brings me so much serenity… The fact that she remembers the time when she was barely three and I brought home a Mimosa and told her I found Whoville.. They will forever be Whoville to us.
My world right there! The two of them make life worthwhile.