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!

The Spoon Theory

I have never heard of "The Spoon Theory". I wanted to share this site with you. It is about a lady who has an invisible illness trying to explain how she plans her day with limited energy. Check it out!

The Spoon Theory


Jenn

The truth about steroids!

So, I'm back on steroids again. I just gotta say...I love them so! I wish I could be on them forever but I know that is not going to happen. They are really a double edge sword. Yes, they take my pain, fatigue and ugly rash away but they can actually be dangerous to your body. Figures! I just wanted to give you my take on steroids that docs don't really tell you about them.

They make you:

1. Feel anxious. We all know this. But what about the pacing? What about the racing thoughts. Wanna sleep? Ha Ha Again, I am writing this post at 1 am.
2. Feel like you want to fight someone. When I was on the 3 day IV round with a 10 day taper, I wanted to fight someone. Seriously! I wanted someone to get in my face. I wanted someone to yell at me. I WANTED to fight!
3. Along with #2, very short tempered. Fly off the handle without warning. Hubby and kids have figured this out. They stay away lol
4. Sweat! I mean just sitting there watching tv and you are sweating like you just ran a 10K in the 100 degree heat. Driched with sweat. Boobs sweatin! Neck rolls sweatin! Butt sweatin! Bring on the powder!
5. Feel very, very hot! Like you are in a steam room. I feel hot all the time anyways but this is worse. I have to turn down the temp of the water. Almost cold showers. Still hot. 60 degrees outside and I go sit on the porch in a tanktop to cool off. Still hot. Grr!
6. Thirsty. I cannot get enough water. I hate water. But I can't get enough when on steroids.
7. Hungry. I wanted chicken wings almost as bad as I wanted to fight. I thought I was pregnant when I was craving chicken wings.  I ate those bad boys all up!
8. Weight gain. I'm thinking that has to do with #6. But it is also part of the medication's side effects.
9. Painfree to almost pain free. It is so odd to me to be painfree. To walk without pain is so unfamiliar. It makes me stop and think "huh, am I missing something? Oh yeah, no pain"
10. Fatigue improves greatly! Now, I still have to plan and calculate what activities to do and make myself take breaks. I am really bad at this but I am getting better about listening to my body. When I am on steroids, I don't have that knawling, exhausted, drained feeling. I actually feel like performing my activities. 

Steroid effects only last for a short time. I do know that I tend to get some increased depression when my symptoms start returning. Steroids give me a taste of what my life should be like. It sucks but even with all I mentioned above, I still love'em!

I thought this was brilliant!

I was sent this brilliant pic today from a buddy on MyMSteam

Have a great weekend!

I want to be pain free...without narcotics!

Being a nurse myself, I know that there are drug seekers and addicts out there. People who "doctor shop" to score narcotics. Then there are people like me. Have an "invisible" illness. Chronic pain every single day. We just want help. We just want a day with no pain. I do NOT want Vicodin, Percocet and Morphine. I defiantly do NOT want oxycontin. I am NOT going to the pain clinic downtown. Again, I am a nurse, I have seen what the pain clinic downtown does to people. I just want my pain to go away. I want to be able to get out of bed in the morning without the pain, stiffness and limping. I want to be able to sleep a full night without waking up in spasms every time I turn over. Being in chronic pain is very, very depressing. (Which increases pain)

There has to be a better way for treating pain.

I just want to be pain free!!

The truth about chronic pain...

The truth about chronic pain is...it sucks! When a person hears that another person has chronic pain, I think they think "ok, they have pain. So what". Having chronic pain daily is depressing. It prevents you from socializing. It prevents you from doing your daily activities. This has been told time and time again. For a person that doesn't understand what is it to have chronic pain, I will try to explain.

1. Your back/hips feel as though someone has punched you.
2. Back muscles have spasms that just take your breath away.
3. When #2 happens, the pain can travel all the way down in your arms. 
4. Standing when trying to do dishes or cook a meal, your lower spine feels as though someone is griping it. Squeezing very hard.
5. The muscles in your arms feel weighted and you can hardly stand to pick up a pillow or blanket.
6. Pain radiates if you are standing to long. This must be alternated between sitting and laying. But if you lay too long the pain increases. So you sit up. Can't sit up for too long either. Now you have to stand. Kinda similar to #8.
7. Changing positions in bed feel like someone is poking you in just the right spot to make the back muscle spasm.
8. The evil "depression and pain cycle": You get depressed because you are in pain all the time. Then, the depression fuels the pain so the pain increased. In return, you get more depressed.
9. Crowded places, sound of chatter can also cause pain to increase. This is why during a flair up, you don't want to be around people.

Having chronic pain just drains you mentally and physically. Pain is invisible for which it is hard for people who do not have chronic pain to understand. Hopefully this will give some insight. I couldn't think of everything. Please feel free to add what chronic pain is like for you.

Jenn :0)

Acceptance and finding closure...

Acceptance and closure...2 things that I have a difficult time with. Let's start with closure. I left a wonderful job a year and a half ago. The fatigue and pain got the best of me. I was finding, cognition wise, it was getting more difficult. With the added stress of position changes, it was overwhelming. My things from my office are still there. I want to go get my possessions but I find it difficult. I think it is just the finality of it all. I hate the fact that I had to leave. I hate the fact that this illness was kicking my butt! I could no longer fight through the fatigue. No matter how hard I tried. I just love that job. I know I really need to go get my things...we shall see.

Now for acceptance. Acceptance is a great concept that I have to remind myself of. Some days are better than others. I have accepted the fact that I cannot do things like I use to. I have accepted the fact that I have to plan out when, how to do and how long it will take me to complete a task. I have accepted the fact that I can't scrub floors, wash windows, mow grass or do yard work. Who the hell wants to do that anyways? Lol. Now with that being said, there are many days that I have to remind myself of the limitations. Kinda ticks me off. I get angry, sad and irritated.  But It is what it is. I can't change the fact that I am sick. 

Acceptance and closure are very important when you have an illness. But accepting acceptance and closure are very hard to do.

:0)

Chores and what it feels like

Trying to complete household chores and other everyday things is a battle for one with a demyelinating condition or Fibromyalgia. I am going to try to explain examples so that people who are not sick can understand:

1. Folding clothes: think of lifting weights. In the beginning of folding think of lifting a 1 pound weight. By the time you get to the bottom of the basket, you are now lifting 20 pound weights.
2. Bending over: think of a small child on your back. Don't forget the sweating like it's 100 degrees outside in a 70 degree house. 
3. Grocery shopping: think of going into a library, trying to find a certain book but not using the Dewey Decimal System. Memory and Cognition is difficult. Plus the noise of other customers talking, kids screaming...even though it is spread out through the store, it feels as though it is right next to you. Pushing the cart?? Think of pushing a wheelbarrow full of bricks. Don't forget about the sweating on this too!
4. Washing dishes: think of standing in front of a hot sauna and having to move back and forth 10 pound weights. So, you have the heat from the water, weight from the dishes and the motion of cleaning them.
5. Washing hands: ok this is a weird one but it happens to me. Washing hands with soap and water. Then drying them off. It feels as though you dried your hands with a jelly soaked dish towel. Hands get so sticky.
6. Driving: (Which I do not do anymore) You can not judge your distance. You have no idea how close you are to another car, curb or stop light. Can't focus at the car driving in the opposite direction. It looks like it is coming right at you. Going down the road and you are wondering how did I get here or where am I? Think of taking a nap in the car and you wake up not knowing where you are. 
7. Vacuuming: think of pushing a shovel with snow. It starts to get harder and harder the more you go. Using the hose to the corners, you have to bend over. See number 2.
8. Cooking dinner: trying to follow a recipe but you have to keep checking because you can't retain the steps. Lifting the skillet or draining spaghetti feels like lifting 50 pounds. Your arms get so tired. By the time dinner is finished, you don't want to eat it because you are tired. Think of being outside, doing yard work, 100 degrees. All you want is to sit, have a cold drink, not eat a hot meal.
9. Scrubbing the bathtub: Yeah right! Bending over...see #2 Motion and strenght of scrubbing...no way. It could take all day to scrub the tub. Think about scrubbing motion for a hour. That is what 5 minutes feels like.
10. Writing this blog: Think of it like a puzzle. Concentration, cognition and wordfinding is difficult. Writing this blog took almost a hour. I have to step away and rest my mind. I have backspaced so many times to correct what I am typing because sometimes my fingers don't want to work, they tend to have a mind of their own. Losing your thoughts. Reading back what I just typed and see that I am repeating myself. What is in my mind doesn't necessarily sound correctly. I have to think, very hard! 

So this is a few things I thought of. Please add comments on what you feel is difficult. I could have added showering. But I really don't know who to explain that one lol