Invisible Illness and perceptions...

Invisible illness is one that the person looks perfectly fine on the outside but has an illness that at times can be debilitating. People who do not have this do not understand limitations one has. I, myself, do not look ill. To look at me, you would not know that I use a shower chair, have chronic pain, debilitating fatigue or difficulty with cognition. To look at me you would not know that I have to calculate everything I do. EVERYTHING! From when to take a shower vs. going to the store. Making dinner vs. washing dishes. Vacuuming vs. laundry. These simple tasks cannot be done one after another. It's shower, rest, store. Dinner, have kids do dishes. Vacuuming, rest, load of laundry in, rest, fold clothes, rest.
Going out to dinner is also a challenge. I have to plan the showering and resting and then going to dinner. At dinner, I have to decide what I want to eat. Simple decisions are difficult. Conversations are a challenge at times. I have to really concentrate on what the other person is saying. If there is a lot of background noise (people talking, kids yelling, music playing) this is all very unnerving. Too much noise actually hurts me physically. Makes my skin irritated. Makes my muscles ache. Makes me irritable. Literally, gets on my nerves.  Now, here comes my dinner. Eat, rest, eat, rest. Damn, why did I just drop my fork? Ok, now why can't I hold my fork??  How do you hold a fork again? Great now I have to concentrate on holding a fork. I'm tired now. I'm ready to go home. I slowly get up from my chair while holding on to it because I might fall. I should have just stayed home.
No one truly sees what having an invisible illness does to a person. People need to get past their "you don't look sick" attitude and realize that you don't have to look sick to be sick. Educate yourself. Or just ask your loved one what it does feel like. Trust me, they will tell you.
So people, stop with the dirty looks when I get out of the car in a handicap spot. Stop with the dirty looks when you see me in the electric scooter in the grocery store. Trust me, I had to swallow my pride and already feel bad enough having to drive that thing! And don't stop and stand right in front of me. Because I am so, so tempted to run you over! ;0)
Jenn

Attack of the shower chair!!!

As you may have read from previous posts, I hate showering. Well, evidently, the shower hates me! I'm having a crappy, painful day so I thought I would take a hot shower, get my jammies on, take my meds with a muscle relaxer and get in bed. What a wonderful plan!! So, I get into the shower. Turn up the hot water which I normally don't do because heat increases my fatigue. I didn't care because I was going to bed. Barely any hot water??? Very strange but whatever it was warmer than usual. As I proceed to wash, I am sitting on my shower chair. Now,  I know there is 1 screw missing from the legs. No big deal.  I felt leaning and leaning! Crap! Then I had to figure how to get up before I completely break the darn thing. Before the shower curtain comes crashing down on my head. Then Fire and Rescue would have to come and see me naked. I know a few of the paramedics. I wouldn't want them seeing that lol The shower chair is missing 2 screws and the third is about to fall out. OMG! Really! Look, I don't ask for much in life and my shower chair is turning on me! All I wanted was to complete my wonderful plan, but it does leaving me wondering, where the other screw went and why was the third one loose? Hmm...God has a great sense of humor!
Jenn

Great app to track chronic pain!

I love apps!! I have found that when I am at the doctors, I have a difficult time explaining my symptoms, pain and the bad days. I found this really neat app called Chronic Pain Tracker . The "lite" version is free but of coarse the full version is $9.99. I can type in what I am feeling, type of pain, location, what the weather is like outside, how I slept, depression, etc...

It also gives great reports that you can take to the doctors with you.

Very colorful. Easy to add descriptions. Track "as needed" medications. Color in where the pain is.

   Also has a "general comment" section that you can type in anything you want. You choose what you want in your diary. If you do not have depression, you don't have to add it.

You can even generate PDF and HTML summaries to take to your doctor too. You can choose, 1 day, last week, 2 weeks, 4 weeks...you get the picture.

I really like it. Takes a minute to figure how to navigate but love the features...and I only have the "lite" version.
Have a good day!!
Jenn

Showering...puts me in a bad mood!

Really? Showering puts you in a bad mood? Yes, Yes it does! Let me tell you why.

1. I have to calculate when to take a shower. I can't shower first thing in the morning because it sucks the little energy that I have. I can't take it before I go to the store. Again, zaps the little energy that I have. Ok take it at night. Then I can just go to bed afterwards. But, sometimes I am too tired to take a shower at night because of the activities I had done during the day.
2. Stepping in the shower. Seriously? Just stepping in the shower can be a challenge. For some people will not understand this but stepping in the shower is a gamble because there is a good chance I'm going to fall.
3. Nice, relaxing HOT steaming shower...yeah right! The temp can't be hot. Sometimes it has to be luke warm. Heat of the shower increases my symptoms. Make my legs like rubber. I'm off balance and cannot see straight because of Uhthoff's Syndrome  I would love to have a hot steaming shower. Ohh...I miss that!
4. Shower is done, time to hop out right? Not so fast buster! I have to sit on the shower chair and dry off and get my bearings. By this time, I am very tired. My arms feel heavy. My legs feel weak and I am so afraid of falling. I want a nap!

So, why am I in a bad mood after a shower? Oh, I don't know? (Please note the sarcasm) It is just exhausting just going through the motions of the 4 things listed above. Getting to number 1 is a challenge. Somedays it is just not even worth it. I am a 30 something yr old woman and it is a challenge to take a shower. Ticks me off! I'm bitter. I'm angry. I hate being this way. I know, that I need to just let go and accept I am the way I am but somedays that is harder to do. I understand that there are people who have it worse. I completely understand that. I know I should be grateful of what functions I do have. I do thank God for that. I really do. I am just having one of those cranky days where showering puts me in a bad mood!
Jenn

Lyme Disease and Fibromyalgia...

Here is a great article about Lyme Disease and Fibromyalgia. People are often getting diagnosed with Fibro when it is actually Lyme Disease. Very scary!!
Lyme Disease and Fibromyalgia

Jenn
P.S. Good catch Mom!!

Disciplining my teenagers...

I'm not writing about my illness tonight. I thought I would write about my teenagers and disciplining them. I have a 16 and 14 year old. They are good kids. Not on drugs. No one is pregnant. Good grades. Respectful,  say please and thank you. However, I know they are NOT angels! They are teenagers. Dumb, think they know it all, teenagers.
My husband and I are not their friends. We are their parents. We are not afraid to make them mad. If they hate us, oh well, they will get over it. We are not afraid to look through their phones. They know this too. I have pulled it right out of their hands and went through their text messages. Mad? So. Pull up their internet history? Sure...low and behold. Some one has been on a chat site after they have been told not to. That was not a good day for the teenager. Goodbye phone. Goodbye internet. Goodbye Xbox. Goodbye DS. Goodbye friends coming over. Hello more chores. Was that teenager mad because we stripped everything away? Yes. Do I care? No. Did we do it because we love them and want to protect them? Absolutely! Again, we are not their friend, we are their parents.
We don't expect straight A's in school. But we do expect them to do their best. If they tried their hardest and got a C, great. If they screw around, don't do the work and get a D, time for change!
Now, don't get me wrong. We do not think we are the parents of the year. We are not. I am sure we have made mistakes. But we do make our kids accountable. We want them to choose the right path to succeed.
Don't try to be your child's friend. Don't worry about making your kids mad. Pull the cell phone from their hands and go though it. Look at the internet history. Use the GPS phone trackers. Iphones come with a free one called Find my Iphone .Mobile spy is also a great one. About $100 per year but wow check out the demo here . For Androids Life360  is a great one and it is free. I really like this one because it will show you a trail where they have been. Check on their grades a few times a month. Ask them, how their day was or if they have homework. Tell them everyday that you love them. Give hugs and kisses. No matter how old they are. (A little back hand never hurt either)
Jenn!

"Maybe you're just depressed" Really?? No kidding!

"Maybe you're just depressed" Hmm..ya think? I recently heard this from my doctor. Asking me if the depression is the cause of all my problems. I instantly got defensive. I said  "I'm not sick because I'm depressed, I'm depressed because I am sick!". This isn't the first time I have heard this. It is so frustrating!!! My father went through the same crap for years too. He was told to see a therapist, change jobs and reduce stress. Completely missed the heart failure! He too did not look sick.
I think this is, sadly, becoming the norm. Doctors can't find anything diagnostically (yet) and they see that you say that you are depressed and have anxiety. So that's it! You are just depressed. "Here take this pill, lose weight, exercise and you will feel better."
Yes I have depression. Yes I have anxiety. My life has completely changed. I once was this hard working, 40-50-sometimes 60 hours a week, mom, wife, camping queen. Now I have left my job, can no longer drive. I depend on my kids and hubby to help me with household chores, meals and shopping. We haven't gone camping in almost 2 years.
Yes I understand that depression does have physical symptoms. I get it. But Doc, look a little deeper on the depression scale questionnaire that you just made me fill out. Ask me why I am depressed. I would gladly tell you! And again...

I'm depressed because I am sick. I am not sick because I am depressed!