The Dirty Little Secret...

You can "Google" all day long on signs and symptoms of your chronic illness but rarely the info will give you a real insight on how it will impact your life. The physical symptoms are easy to point out. Can't stand, sit or walk as long as you want because of pain and fatigue. Avoiding the sun at all costs because it causes the rashes to become enraged. Staying out of hot and cold temperatures because it causes increased fatigue or stiffening of joints which leads to more pain. I am talking about the emotional toll. I like to call it "The Dirty Little Secret" because we don't talk about it. We don't want to sound like we are "whiners", that we are dwelling on the negative thoughts or "not being grateful because there is someone out there who is worse off". (Which btw, when this is said, it's really annoying! You don't think I know that someone out there has it worse? Please don't say this to your loved one.)

Few examples of "The Dirty Little Secret":

• Having to swallow your pride. 
• Feeling ashamed. 
• Loss of independence. 
• Sense of having a purpose, self worth. 
• Strain on the family and my friendships. 
• Feelings of hopelessness.
• Grieving for the "old"  me. 

This is real, suffered in silence and it hurts.

Even putting this out there is a bit uneasy for me. I don't want people to feel sorry for me. I don't want them to think that I am just a whiner. I don't want to hear "Just think positive!" (Yet another statement to avoid when talking to a person with chronic illness) That's not how it works. I can't just think happy thoughts and POOF! All better! If that worked, I would be the happiest, most annoying person in the world! I know that it's not my fault for being sick. I can't control what is happening to me. I don't want people to think that this is all I think about and I am dwelling on what I cannot control.

 
It is important to know that I do not sit here day after day and feeling sorry for myself because I don't But I will admit, some days are harder than others. I will also admit that I have days where I just want to cry and have...in silence, when hubby and kids are out of the house. Then put that smile on when they come home.

If you have trouble reading this, I will post on FB page.

I just wanted to make "The Dirty Little Secret" to be known. With all the physical symptoms that we have to experience every day, we shouldn't have to suffer the emotional ones in silence.

Hugs!!
Jenn

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Researchers....Let me do a "study" on you!

**Before I start my rant, I just want to clarify that I am in no way advocating that a person with chronic pain/fatigue should NOT exercise.**

According to Wikipedia, Fear Avoidance is basically that you develop chronic pain because you AVOID exercise because you FEAR the consequences. Well, no kidding! People with chronic pain and fatigue avoid exercise because they DO fear the consequences! I had recently read and article regarding this topic and it got me thinking...I want to preform a "study" on the researchers.
Here is my plan:

1. All researchers must run 5 miles without stopping before the placement of weights. (Please note, that a person with chronic fatigue or chronic pain feel like they just ran 5 miles and all they did was open their eyes in the morning)
2. All researchers will be given 10 lb weights that are to be placed on both arms, legs and feet. 
3. All researchers will be given a 10 lb weight that is to be placed around the neck. 
4. All researchers will be given 5 lb weights on each hand and 1 lb weight on EACH finger.
5. **Bonus 10 lb weights** These are to be place around the hips and MUST press against your sciatic nerve.
6. Once all weights are placed accordingly, each researcher will have tasks to perform, such as: vacuuming, laundry, washing dishes, making dinner and grocery shopping. You may not take the weights off at anytime. **Hint...Beware of bending over to pick up kids clothes off the floor. Sciatica will flare up**
7. Once all of the aforementioned above is completed, now you must "exercise". 
1. It is recommended that a 10 minute walk is good to start off on. Slowly work yourself up to 30 minutes. 
2. Lifting...lift 1 to 3 lb weights (on top of your already 10 lbs on each arm and 5 lbs on each hand) Yea, that sounds good!
8. After the exercises are completed, additional weights will be placed accordingly: 5 lbs to arms, hips, legs, feet, and neck for a total of 15 lbs to each area.  5 lbs will be added to hand for a total of 10 lbs and 1/2 lb to each finger for a total of 1.5 lbs. (This is an important step because thought the day with someone with chronic pain/fatigue, the heaviness increases.)
9. Are you exhausted yet? How's the pain? Because your day is not over yet...
10. Now you must complete a series of math, reading and comprehension questions. This is timed. Must do all calculations in your head. No calculators or "Googling" of any sort.
11. While still wearing the weights, there is a gathering tonight with 25 of your relatives and friends. This will take place is a small room with children running around screaming and loud chatter. After 20 minutes have past, you must maintain a conversation without forgetting your words, not losing your train of thought, saying the wrong word and without stammering. 
12. You arrive "home". You now must get kids bathed, make their lunches for the next day, put the kids to bed, pick up clutter around the house and fold that last basket of laundry.
13. Time for shower. A shower chair will be allowed but you must not remove the weights. Don't forget to wash your hair. 
14. Time to get dried off and dressed. Good luck!
15. Time to finally get in bed. Weights still intact and your bed tonight will consist of rocks in various places in the mattress. Every turn that you make in bed with the weights and rocks poking you, I doubt if you are not going to sleep well. You will wake up several times at night because of pain. Guess what, now you have to do it all over again tomorrow.

Is my study ridiculous? Perhaps. Far fetched? Not really. This is how I truly feel almost every day. I feel like I just ran 5 miles when I open my eyes in the morning. I feel like my extremities are weighted. I feel like more weights are placed as I vacuum the living room floor. I feel that sciatica pain. I have a terrible time with math or understanding a question, making a decision or wondering what I had just read. In a room with chatter and kids screaming makes my skin hurt. I, do often wonder, if there are rocks in my bed.
I totally get that if you do absolutely nothing, don't move, don't try, yeah, your pain is going to worse. As will the depression. But when you have chronic pain and severe fatigue, it sucks! So, Fear avoidance, yeah I do believe I have that. Why wouldn't I?  I don't want my pain to become severe. I don't want the heavy wave of fatigue hit me as if I am going to collapse. I don't want to pay for it for 3 days after the fact.  Does this mean, since I have "Fear Avoidance" that I have given up? No, not at all. I still try and try again. I think we all do! I think people, like me, with chronic pain and fatigue, we fight. We have to!!

Hugs!!
Jenn

Oh and to my make-believe researchers: After completing the study and you still don't get the pain, fatigue, heaviness, the fight that chronic pain and fatigue people like me go through every single day...Well then, I have one more task for you to complete...poke yourself in the eye. Don't "avoid" it!
 
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The fake smile...

I think I have perfected "the fake smile". I really do. The other day we had a family get together and in the beginning I was feeling pretty good (Thank you Mr. Medrol Dose Pack). But later in the evening I caught myself giving "the fake smile". You know the smile I'm talking about. That smile that you flash when you don't want to explain how you are feeling because you are finally out of the house and you don't want to think about it. The smile that you flash because you just don't want to explain how miserable you feel because they really wouldn't understand it anyway. So, why bother?

99% of the time I flash that "fake smile" and give my standard answer "I'm doing pretty good." (I should copyright it) . That response can mean so many things. It could mean that in all actuality, my back is hurting from sitting on these hard chairs. My skin is starting to feel like an open blister that I just rubbed up against the table because of the many conversations that are taking place, kids running around and the music playing in the background just gets under my skin. Makes me hurt all over. My muscles ache and make my arms and legs feel like someone placed weights on them.

Usually half way though my meal I have to stop and just sit quietly to gain some energy up to finish. When asked "Is there something wrong with your food?". I reply "No, (enter fake smile here) just digesting and taking my time.". What it really means is I am having difficulty holding this 20 pound fork because the simple act of eating causes fatigue. That is why it takes me so long because I need rest breaks even for that. I have to take smaller bites because the more  I eat the harder it is to swallow and I don't want to choke.

After sitting on a hard chair while slowly eating my dinner, all the conversations seem to collide together that makes it sound like a tornado siren. Kids are loud and running around the table but just being kids and the music playing in the background is just too much for me to take in. I sit there quietly with my fake smile and act as though I am paying attention to what the other person is telling me but by this time of the evening I probably don't even know what you are saying and I am just nodding and saying "Uh-Huh". For all I know, I could have just agreed to give you my first born.

At the end of the evening I am whipped but managed to flash that "fake smile" one last time. I had a family member come up and tell me "See Jenn, you got out of the house and all you had to do was just sit there.". Though I love this family member dearly and do not hold a grudge but "just sitting there" was NOT the only thing that I had to do in order to come. I had to plan before I left the house. Plan and time when I needed a shower and rest. Do my hair, rest. Get dressed, rest. Ride in the car, rest in the car. Sit and try to figure out what I want off the menu because I am so indecisive now it is ridiculous. During a conversation I am hoping like hell that I don't mess up my words or forget my train of thought so I don't look like an idiot. Especially don't want the look of "Oh you poor thing." when I am trying to think of a word. Again, when this happens, here comes the "fake smile" and even a fake giggle just to laugh it off. While I am "just sitting there" I have to tell myself to take deep breaths because of the tornado siren like conversations are all around me. It's making me hurt, ache. Eating, rest. Drinking, rest. Comprehending ONE conversation, rest. This is the point when I am sitting quietly and I tap my husband's leg and whisper "Let's go.". So, please don't ever think that all I did was "just sit there" because that is not true.

After all this being said, I actually taught myself something. Me not wanting to truthfully explain how I am feeling is not the only reason why I flash the "fake smile". It also because I don't want my loved ones to feel sad that I have a chronic illness. I do what I can, when I can.

Hugs!!!
Jenn

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Touché Lupus, Touché!

Discoid Lupus is an annoying, painful, ugly disease. I normally have flares on my face, arms and neck. I'm used to having lesions there. Never thought the Lupus liked to keep things interesting. Gesh!
I woke up the other morning, completely, utterly drained, joints aching and muscles all stiff. It felt as though my blanket weighed 50 pounds. My arms and legs were anchors. I, seriously, had a conversation with myself if I really wanted to waste the energy to lift the 100 pound remote control to change the tv station. To hell with it! It's not worth it. I'll just watch the Snuggie infomercial.
At this point, I realize that I am having a flare. But usually when I have a flare, my Discoid rash is angry. There is nothing on my face. Nothing on my neck or arms. Hmm... Okay, whatever. So, I stayed in bed the entire day. I told my hubby "You know I don't feel good when I am not "farming" on my iPad.".
The next day, the back of my head felt like it was on fire. I went to rub my forehead...OUCH! So, I go to the mirror and notice a few spots at the top of my forehead but my hairline seemed really, really REALLY much thinner. Seriously! My scalp now? And taking my hair!

Not the best pic but you can still see the lesions.

UGH!!! Well, that confirms my suspicions, I'm definitely having a flare. It may not look like much but these small, raised, angry lesions burn and are quiet painful. Hurts to brush my hair. Rub my head. I am aggravated at this point. But then...I started thinking "Well, that explains my forehead but but why the hell does the back of my head feels like it was on fire?". Ohhh, this is why...

Upper part of the back of my neck (Does that even make sense?)

This is also new but totally explains the burning. (Hopefully that is the lighting of the pic and not gray hair because that would be the icing on the cake!) This flare is just so odd. I have never had it on my scalp or that far up my neck. The worsening of the fatigue is normal, feeling like crap is normal, joints aching so bad that I want to rip my arms and legs off is normal but these new areas are not. Medrol Dose Pack it is! Thank goodness my Rheumy gave me a Medrol Dose Pack to keep on hand in case of a flare. (My last flare, it took the Rheumy office 10 days to return my call. That's another story.)
So, Lupus, you have proven that you do have a mind of your own. You like to flare when I least expect it and you like to thrown in something new to keep me on my toes. As I said before, Touché!
Hugs!
Jenn

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"It's noon and you're still sleeping?"

"It's noon and you're still sleeping?" I hear this a lot! Sounds terrible right? Well, I suppose to someone who doesn't have a chronic pain and/or chronic fatigue it does. On one hand, I feel guilty for sleeping in so late but on the other hand...not really. I don't know why I feel guilty. I think maybe because it is a stigma that you shouldn't sleep until noon. I don't know but I do know that I can't work anymore, the kids are in school and hubby is at work. So, really, why do I need to wake up at 8am?

I have a terrible time going to sleep at night. My mind races. I can't get comfortable. I can't lay in one spot for too long because I get stiff and muscles start to spasm. When I actually do fall asleep, I am either waking up with every turn because of pain, physically acting out my dreams and talking in my sleep. Oh, and of course, the restless leg syndrome/periodic limb movement disorder. Hmm...no wonder why I wake up feeling like I only had a hour of sleep!

Yes, when I said "physically acting out my dreams" is really what I mean. I have fallen out of bed twice because I woke up acting out a dream. (Bump on my head and swelling to my elbow. Great, what's next? Broken hip!) My hubby will wake me up sometimes because he says that I am reaching my hand out to hand something to somebody or I am trying to reach for something. Weird, I know.

Talking in my sleep is great entertainment for my hubby. He tells me that I will just start talking. He also tells me that we have conversations in the middle of the night and I appear to be awake but never remember them the next day. I told him "Well, I will never be able to cheat on you because I would probably tell you in the middle of the night." 

Back to what I was saying (damn fibro)...When I wake up in the morning (or afternoon) I have to make myself to wake up. I can keep sleeping and sleeping well into late afternoon. Recently, I have been making myself get up at 9 am but then by noon, I am so exhausted, I have to take a nap. So, am I defeating the purpose?

I decided to try Melatonin about a month ago. I am not one for supplements or natural medicine (except for medicinal marijuana of course) but it does seem to help some. Along with my other bedtime medications, I don't know why I am not knocked out. All the medicines may be the reason why I can just keep sleeping or vice versa?? Who knows!

So yeah, I do sometimes, majority of the time, sleep until noon. Am I depressed and that is why, no. Do I like it, no. Does it make me feel unnecessary guilt? Of course it does! But I feel, I am not missing out on anything. No one is at home in the morning. It is quiet and peaceful. So what is the harm?

Hugs!!
Jenn

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Chronic illness and raising children...

Chronic illness affects not only you but your kids too. I tend to forget that from time to time. I am not the same mom I was 2 years ago.  Definitely, not the same mom, 5 years ago. I have 2 awesome teenagers. Sis is 15 (going on 20) and Jake is 17. They are really great kids. Good grades, goals set for college. Just overall really good kids. Since my chronic illness kicked into overdrive little over 2 years ago, they have had changes in their life as well. We were not exactly the typical family. I was the breadwinner and my hubby stayed home with the kids when they were young. We made more money that way. Now, I am the one who is home all the time and hubby is the one who works the crazy hours. That was a big change for the kids. When our roles switched, so did our finances. Hence some luxuries had to be cut out.  Now, don't get me wrong, they do not go with out. Still have tv's, cell phones, internet, dresses for dances. It is just not the "Hey, let's go shopping just because it's Tuesday" kinda thing. But for being teenagers, they understand that we can't go out and spend $50 on Saturday and Sunday or justifying paying for cable TV when they stream movies off the internet anyways. They do not want for anything. Except for their mom to feel better.

They have had more responsibilities around the house. I can't clean like I used to. I can't mow or do yard work like I loved to do. They really don't complain much with the extra chores. In fact, when I am vacuuming or washing dishes and start to get fatigued, one of my kids will say "Mom, you are getting tired and your face is red. Go lay down and I will finish it.". Pretty awesome for a teenager to notice symptoms and volunteer to finish a chore.
Ya know the days when the pain is terrible, the fatigue is kicking your ass or even when the depression and anxiety is up for no apparent reason... Ok, I will admit, sometimes I am not nice. Beeee-itch if you will. I know that I am hateful at times. I REALLY don't mean to be. Just some days, I can't handle the pain or the fatigue. I hate when I get like that. It is not their fault but I think they know, by now, that it is part of the illness. They have learned when to leave me be. I have even heard Sis say "Mom is not having a good day Jake, leave her alone. She is resting.". I Hate it!
I know that Sis worries when she has a softball game if the weather is going to be cool enough for me to go. I try my damnedest to make it to every game. Crappy part is her games are usually in July. July is tricky in Ohio. It can be 100 degrees or it can be 65 degrees. This past year was awesome! You actually had to have a blanket at game because we were so cold in July. That's Ohio for you...50 degree evening at the ballpark in July!

I do know the most important aspect that has changed in my kids' life is them wondering if  I am dying. My children have come to me with tears in their eyes asking me that very question. (This was during the time when I just stopped working and it took everything I had to walk 15 feet to the bathroom.) This broke my heart. It broke my heart to know that my kids were hurting and I was the cause of their pain. We sat and cried together. I explained that I can understand that they might think I was going to die. This is the first time that physically my symptoms got the best of me. I reassured them over and over but I know that they still are worried.
Some days I feel like I am a bad mom. I feel so guilty for many things. Guilty because the "bad" pain days I snap at them. Guilty because I tend to isolate myself more . Guilty because I cannot do what I want to do and that affects them. Guilty because I am the mom and I am the one who should be doing the cooking, cleaning, working, going on vacations no matter what the temperature is outside. I feel guilty when I have to say "How much is it?" or "We only have X amount of money, find something a bit cheaper.". I know that money isn't everything and that it is a good thing for a teenager to learn but it still sucks and I feel guilty. 

After all this being said,  I understand that it's not just about me. My kids are living with chronic illness too. I am so very proud of my kids. I am impressed that they jump in and help. Find compassion and love. Having my back when I need it. (Sis demanding the doctor that she needs do something!) They find forgiveness when I am snappy, cranky and hateful. They are truly, truly amazing kids. They must have been raised right!!

Hugs!
Jenn

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Inability to make decisions with a dash of Attention Deficit...

I really think that my chronic illness has also given me the inability to make decisions with a dash of Attention Deficit! I haven't posted in awhile because currently I am having trouble with what to post on.BUT I can't decide if I like it, if I am just rambling or when I am writing, 20 million other topics come to my mind and I cannot choose which one! Hell,  I have already changed the title of this post 4 times! UGH!!

I truly feel a overwhelming sense of loss when there is a decision to be made. My mind goes blank. Reasoning skills are out the window. It is an empty feeling when unable to make a decision. (Even have flipped a quarter to decide what task to do first) I never used to be like this. I was a "take charge" kind of girl. But simple decisions kick my butt! Like, what I want to eat or do I really want to take a shower today. Do I want to do the dishes or a load of laundry first?  Like I said...simple decisions that are total waste of time to think about. I, do rely heavily on my hubby and kids to help me. Of course, I get a little chuckle from my teenage daughter who likes to find humor in my illnesses when ever she can. (That's how she copes so I let it slide)

I, seriously, have written up 5 drafts of topics of what I want to blog about.
See, now, I am at the point of writing this and thinking, "Do I even like this post?", "Am I rambling?", "I really could be blogging on something else.", "Did the washer stop?", "I really wish I could sleep like my dog is sleeping.", "Man, I need to mail out that letter.". AAAHHH!! My mind goes in 20 different directions!
I am sure to some readers, they will think that I am just rambling, crazy or lazy. For which I am not! So, I decided to write it anyways because I am sure there has to be some one out there who can relate to my indecisiveness. I know that I can't be the only one!
(BTW, title was changed for the 5th time)
Hugs!!
Jenn

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