Sunday, May 24, 2015

Why me?

One of the phases that I went through at the beginning of my health problems (and admittedly still go through occasionally),  was the "why me" phase. This was not one of my most shining moments. My poor husband listened to my whining and crying for a long time. I felt like I was being picked on. As my friends were having babies, creating successful careers, and running marathons while nine months pregnant (seriously, so annoying) I was so sick I could barely get out of bed. My husband asked me why I was jealous of people having babies, did I want one? The answer was NO, but I wanted the option to have one. I also wanted the option to run a marathon while pregnant and then run another marathon one month after the baby was born.  I wanted the option to travel the world, to get my Phd, to have an awesome career, and those options had been taken away from me.  I was resentful that while everyone I knew was accomplishing something, I was a 27 year old with a body of an 80 year old.

Why me? For months I wallowed in my own self pity. There is nothing wrong with wallowing when things are at the worst, especially when your life takes a dramatic turn like mine did. However, eventually it helps to realize that bad things just happen in life, even if you're a good person. Sure there are people out there whose lives are just perfect and everything goes as planned and they accomplish all these great and wonderful things, but more often than not those people are the exception. As I talked with more people and got to know the struggles of many others I realized that sometimes I was on the other side of the "why me" question.

Why me? It took only two years for me to receive a diagnosis, for many it took decades.

Why me? I wasn't completely incapacitated by my illness and was never housebound.

Why me? I was able to find a doctor who took my insurance while many people don't even have the luxury of insurance.

Why me? I had a good support network of family and friends who for the most part believed and supported me.

I realized that there were some good things that were happening to me, even if they were smaller than I would like. Still it took me a while to give up on asking the "why me?" question and accept the positive things. I kept thinking just because other people's lives suck, why did mine have to? Why couldn't I be one of those people who get to lived charmed lives? Honestly, I think there is no good logical answer to that, because as my Dad always said, "life isn't fair" and "fair is where you go to see the pigs."  Sometimes bad things happen and sometimes we don't get lucky. but when things get rough maybe we need to focus more on the times that things do go our way. Even if it's a different way then we would prefer.

Thursday, May 21, 2015

This is your brain when you're in pain

My blog has just been sad lately, I blame the kidney stones. My brain is barely capable of full sentences at the moment, much less coherent thought.  So all I've got today is some pain humor.

This is your brain...

This is your brain when you're in pain...

If you don't remember the awesomness of Rachel Leigh Cook that I'm refering to, here it is for your viewing pleasure.

Monday, May 18, 2015

What you don't see- looking behind invisible illness

When you see me smiling what you don't see is how much pain I'm in.

When you see me at the store what you don't see is that I've used all my energy dragging myself there only because I've run out of food at home.

When you see me out with my friends what you don't see is that it will take me 3 days to recover.

When you see me circling the parking lot for a closer space what you don't see is that I physically cannot walk all the way across the parking lot that day.

When you see me out on a walk what you don't see is that hobbling around the block is the extent of my capabilities.

When you see me looking energetic and getting things done what you don't see is that this is the first good day I've had in weeks.

When you see me on vacation what you don't see is how many activities I had to forgo in order to have a little bit of fun.

When you notice that I'm a little quiet what you don't see is that I'm expending all my energy just being physically present.

When you see me at the doctors office what you don't see it that sometimes I practically live there.

When you see me looking tired what you don't see is that pain has kept me awake the last four nights in a row.

What you don't see is that some days my pain levels are low and I can pretend I'm normal, but other days it's all I can do to get up off the couch. I never know what kind of day it will be.

If I don't look like I'm paying attention what you don't see is how the pain has taken over everything.

What you don't see is the guilt I live with every day.

When you talk about how anyone can do anything they want to do what you don't see is how much that hurts me. Because unlike you, I can't do anything I want.

When you judge me for not doing enough what you don't see is that I've actually done too much.

What you don't see is how physically, emotionally, and spiritually draining having a chronic illness can be.

What you don't see is that I have the same wants and desires as a healthy person.

What you don't see is that I'm doing everything in my power to improve my health, it's just not working.

Tuesday, May 12, 2015

You know you have a chronic illness when...

It's Fibromyalgia Awareness Day and Lyme Disease Awareness month so I meant to have a really meaningful post for today. Instead I ended up with some sort of zombie flu (I should not have watched the Walking Dead last night, now I'm paranoid, haha). So all I've got in me today is the graphic I made pre-zombie flu that breaks down the basics of Fibro and Lyme. They might seem like two very different diseases but they have a lot in common, as do most chronic illnesses.

- Most people don't think they are real
- The treatment for each disease is undetermined giving individual doctors a lot of control that they tend to not handle very well.
- They are expensive
- They change your whole life
- They can cause depression
- The ambiguity makes getting a diagnosis difficult.
- They leave you feeling isolated and alone.
- No one, including doctors, knows enough about them.

People need to be more aware of Fibromyalgia, Lyme Disease, and many other chronic illnesses. They need to be aware for the sake of their family and friends, one of whom probably has a chronic illness, and they need to be aware in case they themselves ever come down with an illness. I want people to understand more than I did when I got sick. I had no idea what was happening to me and it was quite a shock. If I had only known more about what life was like as a sick person, I think it would have helped my transition.

Thursday, May 7, 2015

4 Tips for parenting with chronic illness

1. Let go of the guilt

We all spend a good amount of time feeling guilty, it just comes with the territory. Even healthy parents carry guilt about whether they are working too much or not providing enough for their kids. Parents with chronic illness just get an extra dose of guilt because we have more limitations.  I always worry about the fact that I'm not involved more with my kids' school. I sometimes think I'm the worst Mom because I don't volunteer very often, but I'd rather save my energy for when my kids our home. Still, I often torture myself with guilt even though there is nothing I can do to change the situation. That kind of guilt is pointless and I know I need to let go. What's important is that I love my kids and I take care of them. I may not be super PTA mom, but I still spend lots of time with them.

2. Maintain boundaries

It's difficult to maintain boundaries when you have a chronic illness and it's even harder when you have to maintain boundaries with your kids. My kids know that I want to do as much as I can with them, but I do sometimes have to tell them no and they need to abide by that. We can talk about how it makes them feel, but there is no guilting me into doing something I can't physically do. My kids are still young and don't fully get the concept of boundaries, but my hope is they will get better as they get older.

3. Put yourself first

It sounds horrible and selfish but you have to put yourself first when you have a chronic illness. It's just like the oxygen mask on the airplane, you have to put yours on first so you can help your child put on theirs.We need to take care of ourselves first before we can take care of other people. It doesn't do anyone any good if we're a mess. There are times when I have to put my health first and tell my children no. They don't like it, but over time they have observed that if I physically can do something for them I will do it. If I say no it's for a real reason and I'm not just putting them off.

4. Find ways to interact with your kids that don't suck all your energy

I always imagined I'd be the parent to teach my kids how to play soccer, basketball and other sports. I love being active outdoors and I want to pass that onto my kids. Unfortunately those activities are all energy suckers, so I've had to turn to other options. I work with my kids on their reading and read books to them because that doesn't require any movement. I sit at the kitchen table and talk with them while they color. My daughter and I often spend our time together doing yoga. She's better at it than I am and loves giving me a hard time about it! One of my sons's favorite activities is when I lay on the floor and build blocks with him. It's not flashy or fancy but we enjoy spending time together.

You have to find what activities work for you and your child. It's going to be different for everyone, but the good news is there are easy ways to interact and teach your kids without expending too much energy. A trip to Disney World may be more exciting, but what your child is going to remember is that you spent time with them.

Wednesday, May 6, 2015

Positivity is not a cure for chronic illness

Dear Healthy People,

I have a confession to make. Sometimes I resent you and all the things you have but don't appreciate. You have your health and you don't even realize how lucky you are. I know I'm supposed to "count my blessings" blah blah blah, but sometimes I just don't want to.  Sometimes I just want to revel in the suckiness that is the lottery of life. Sometimes I just don't want to be happy for you. Sometimes the green eyed jealousy monster just wants to hate you.

I promise I don't spend all my time hating your guts. Most of the time I'm really delighted for you, but I just get tired. I know you don't do it on purpose, but occasionally it feels like you're throwing all the things you can do in my face. When you say things like...

-Anyone can exercise if you want it bad enough (would you suggest that to someone with cancer?)
-Anyone can be healthy if they just eat right (I just can't even)
- I've been sick this week and no one can function like this (New flash, I do)
- Why don't you just get up off the couch more (if you're speaking to me it's means I'm off the couch, so shove it)
- I don't understand why anyone would stay home all the time (don't you know it's soooooo fun)
- You can do anything you set your mind to (I set my mind to incinerating you and that didn't work)'s really hard for me.  What is true in your world is not true in mine. I live in a world where health is not connected to how much exercise you get or how many fruits and vegetables you eat. I live in a world where no matter what I do and no matter how hard I try, my body will be broken. I live in a world where I have to function while being sicker then you have ever felt. No one gave me a choice.  I live in a society based on the needs of those whose bodies work correctly and yes, sometimes I resent it.

When you have a chronic illness you quickly run into what I call "Team Positive." This is the "so you have a chronic illness, it doesn't matter because you can be Happy Happy Happy all the time!" mindset. This belief has its place. There is no point in being sad and depressed about being sick all the time, especially when there is nothing you can do about it. The reality is though that chronic illness is not all rainbows and unicorns and positivity is not a cure. Sick people are still people, and we still have feelings that are not always uplifting. I prefer to acknowledge those feelings, admit that they are valid, blog about them, and then try not to dwell on them. But if you are announcing your 4th baby, your 20th marathon, and or an prestigious award at work and I don't react quite as excited for you as I should be, know that it's not you.  I am happy for you and all you've achieved and I really don't want to take away from that. I'm just dealing with the part of myself that still resents that I won't ever have those things. I promise I'm working on it.

Sunday, May 3, 2015

Implementing Radical Self Respect with chronic illness

I was reading about radical self respect in regards to feminism when I realized that is was a concept that I really needed to implement in the rest of my life. So I hereby give myself permission to apply radical self respect with regards to my chronic illness.

This is what my radical self respect looks like:

- It is not my job to prove my chronic illness to others. They can believe me or not believe me, it's not my problem.

- I will not hide my symptoms in public. I will no longer take off my arthritis gloves when I leave my house. If my hands are hurting I'm going to wear them even though it's not fashionable.

- I accept myself and my body for who I am. I do not accept that I am broken or somehow less because of my illness.

- I will not accept the restrictive box that other people try put me in.

- I will not feel guilty for failing to meet others expectations.

- I deserve to be loved and appreciated for who I am and not what others want me to be.

- I will not hide the parts of my illness that make people feel uncomfortable.

- I refuse to feel inferior when doctors/pharmacists/nurses/a** holes belittle my pain.

- I will not let others define what God has in store for me. I abide by my God alone.

-  I will put myself, my family, and my friends (in that order) at the top of my priority list. Anything else is at the mercy of whether or not I have the energy.

- I will say no when I cannot do something and will not be talked into saying yes out of guilt (I'm terrible at this one, but NO MORE will I be guilted into things against my best interest).

- I will take medication when I need it. Other people's opinions be damned.

- If there is a toxic person in my life, radical self respect means that they are gone.

What does your radical self respect look like?

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