Wednesday, March 4, 2015

Now I have guilt

My daughter has a presentation as school today. It's her first speech but she's already a pro. She's outgoing and not easily intimidated so she's going to do wonderfully. Today a note came home from the teacher stating the requirements for the presentation and inviting any parents that wanted to come. Here comes the guilt part- I don't want to go. I helped her write her speech, helped her practice it and came up with her costume. I've seen her speech. and I'm tired and hurting and want to stay home and rest. Of course a bunch of the other parents are going to show up and make me look like the lazy parent that I am and my daughter is going to be mad at me for not showing.  This is where having a chronic illness and being a parent really makes life difficult. I want to be that super involved Pinterest parent, but I just don't have enough energy to do everything. I prefer to save my energy for when my kids are home with me.  That way from the hours of 3-8 pm my kids have 100% of my attention and energy, but that is hard for my kids to understand.

When you get diagnosed with a chronic illness they should hand out a pamphlet, "How to deal with the guilt." No one tells you how many people you are going to let down, how many people will be disappointed you can't meet their expectations, and how horrible you will feel about not being enough. It's easy to say that we shouldn't feel guilty, but it's hard to implement that in our every day lives. When I have a pair of big brown eyes staring up at me asking me why I can't do something the other moms do, it's hard. It's just another battle that those of us with a chronic illness have to fight on a daily basis.

Monday, March 2, 2015

Why no one cares about chronic illness, still

This week my sister and I were discussing why people don't' care about chronic illness and it reminded me of a post I wrote in 2013 called "why nobody cares about chronic illness." After re-reading it I realized that I've learned a lot since I originally wrote that post. I wrote it when I was angry and still deeply grieving over the life I had lost. At the time I was still going through Lyme disease treatment and I was a mess, and few people cared about what I was going through. While I had an IV sticking out of my arm for treatment I was actually asked to volunteer at church by watching 18 month old children. I was furious that what I was going through was so overlooked that even though I could barely walk, my church, the people who should have cared about me, asked me to watch little children. Since then I've become more accustomed to my chronic illness and learned to deal with things better therefore I decided I needed to update this post. 

Most people do not care about chronic illness. That is a fact, but why don't people care? The older I get the more I realize that life is hard and most of us are just doing our best to get through and enjoy ourselves a little on the way. There are numerous bad things happening all around the world that we get bombarded with every day. Every time we turn on the news someone is getting murdered, children are starving, somebody amazing is dying of cancer, children get kidnapped, a town is wiped out by a tornado, terrorists are blowing up innocent people, and it goes on and on. It's a rough world and many of us deal with it by shutting out the bad things. We can't cry about all the bad things happening because we would never stop crying, so we almost become numb to tragedy. Therefore it's actually not all that surprising that no one cares about chronic illness. Regrettably most people don't even see chronic illness as a tragedy, they see it as a minor irritant that can be fixed by going to the doctor and taking the appropriate medication.

Another reason no one cares about chronic illness is that when bad things happen to people we know we are really great at helping in the short term. Somebody is sick, great I'll drop everything to help for a couple days. Somebody just had a difficult birth and needs some TLC, great I can help with that. Somebody has a loved one die, I'm there as a shoulder to cry on. Someone lost a job, I'll drop all the cash I can spare in the mailbox. Somebody is getting a divorce and needs emotional support, I'm there.  But the thing is these are all examples of short term assistance. As human beings we are great at helping in the short term, but anything that is long term (not to mention forever) like chronic illness we don't know how to handle it. This is why the person who has a minor surgery gets much more support than someone with a chronic illness. It seems backwards that everyone will help the person who had the flu, but they aren't willing to help the person that is always sick.

There is also the perception that because we have chronic illness and it's going to last forever, we have to get used to dealing on our own. To help us wouldn't do any good because we are going to have to learn to be independent due to the indefinite nature of our illness. This is tough to hear. There is nothing like being at the end of your rope feeling like your whole life is in pieces and then you're told you just need to toughen up and learn to be independent. Toughing up just doesn't cut it though. Chronic illness can and does destroy your life, it isn't just a matter of getting over it. We need support and love and understanding to help us to stay strong. The more support we get the more will be able to weather the rough times.

If you have a friend or loved one with chronic illness, I know it is hard to be endlessly patient, but please keep in mind what they are going through. Ask them about about their illness, find out how they live from day to day, ask them what their future holds, ask them how their care could be better managed, ask how you can lighten their burden. Ask them all these things and support them, support them, support them.

Tuesday, February 24, 2015

Coming out of the chronic illness closet

Them: "Hey you want to go on  (fill in the blank here) trip with us?

Me: "Uh, I don't think I can."

Them: " Oh come on, you know you want to."

Me thinking: Sure I want to but there is no way I can do that physically it would just be way to much. What to I say? Do I say I can't because it will be too exhausting? Then they will probably tell me  I should just go to bed early and the problem will be solved. How do I convince them to let it go but still include me next time?

This is a not infrequent scenario on my life. When I meet new people I never know when to come out of the chronic illness closet. At the beginning of the relationship it feels awkward to just announce it, but as a relationship heads toward friendship I can never find the right moment. Discussing illness is difficult and as a private person I am always trying to find the right balance. This is not made easier by the fact that on the outside I look completely normal. I am often in unbearable pain but I am great at putting on my game face and hiding it. Someone who doesn't spend a lot of time with me might think I live a normal life. Even someone who spends a lot of time with me but always in a place where I have my game face on would not be able to see my disability. On the surface I look like a stay at home mom who involves herself at church and school to keep herself busy. That is true but it is not the whole story.

As my relationships develop at some point people start to notice that I tend to flake out a lot and that I'm hesitant to make commitments. I can look unreliable which is actually the complete opposite of my personality. I hate looking like a flake so I do want to explain what is going on. At the same time I know that few people can really comprehend why I flake out so much which makes me wonder if there is any point in making myself vulnerable.

I do not know the magic point in a relationship that chronic health problems should be revealed. What I do know is that I need to give my friends a chance. I need to give them a chance to help me and to try to understand. It's hard opening myself up to their judgement. It's embarrassing and difficult to explain and humiliating to share something so personal, but it needs to be done in order to have true friendship. Will I regret it? Possibly, but chronic illness is a core part of me now and I can't heal physically or emotionally without sharing who I am.

Thursday, February 19, 2015

I caved

I always said I wouldn't do a Facebook page, but I'm apparently full of it. The truth is that Facebook is a great way with other people who have chronic illness. It's faster and easier then blogging or email so I'm not putting it off any longer. I love blogging, but I'm finally feeling good enough to spend more time with the chronic illness community. I know I'm years behind the times here (that's what stubbornness gets you) but please go ahead and like my Facebook page. You can find the link on the right hand side of my blog.

Wednesday, February 18, 2015

5 things to let go of when you have a chronic illness

As Elsa says, LET IT GO!!

1. Your perfectly clean house

Once upon a time I had a daily cleaning schedule that was strictly adhered to and the result was a almost spotless house. It laid my OCD to rest and I was a happy women. Then kids happened which made my house not so spotless, but still I was able to keep it clean by normal standards (if not my OCD ones). Then chronic illness happened and everything went to hell. My once spotless house now has random piles of papers, toys, backpacks, books, and clothes. My once spotless kitchen floor is swept, but not mopped. My beautiful wood floors that used to sparkle now look smudgy because I haven't been able to get on my hands and knees to wipe them down.

I have had to learn to suppress the OCD side of me and let certain things go around the house. Instead of a shiny magazine friendly house, now I strive to at least clean up the dirt. I just can't physically maintain the perfect house anymore. At this moment I am annoyed because both the bathrooms are starting to look gross, but here I am sitting on the couch. I wish I could clean the bathrooms to perfection, but I know my body can't take it today so I'm letting it go. We aren't in danger of drowning in filth, there is always tomorrow.

2. Defining yourself by your job

I've always been a hard worker. In high school I worked multiple jobs at a time to earn money for college. In college I worked 35 hours a week on average while attending school full time. I was always busy working and considered myself successful because I was able to financially support myself. Then came chronic illness which made those crazy work hours completely impossible. I had defined myself so long through my work and financial accomplishments I didn't know myself. I felt like I was a failure and that I didn't count as a person. This is something I'm still working on letting go of, but slowly I've begun to realize that my worth as a human being is not tied to my job or how much money I make. Even if I never achieve something miraculous, I can be a good person and that is enough.

3. Being the social butterfly

I hate being alone so much that it makes me grumpy and depressed, and as you can imagine being sick has led to me being alone often. I used to spend all my free time socializing because that was how I got my energy. I rarely turned down an opportunity to do something with friends, even if I had just worked all night and was exhausted. Nowadays I've had to learn that I can't attend everything even if I want to. I have to prioritize what is the most important to me and let myself stay home alone and miss out on certain things. I hate being left behind and I don't know if I'll ever let this go completely, but I'm working on it.

4. Exercising the way the doctor tells you to

We've all heard that we would probably feel better if we exercised more and lost more weight. If we just spent an hour jogging five days a week all our problems would go away. I have put this to the test multiple times. I used to be an active person so I want to be active again. Dozens of times the past few years I've tried to keep an aerobic exercise routine. Every single time it ends in me hurting more than before and being so exhausted I have to spend days in bed. It took me a while to learn my lesson, but eventually I realized I needed to trust my body and not the doctors bad advise. My body cannot handle intense aerobic exercise anymore. Instead I need to do gentle exercise like walking or yoga. I'm in a lot less pain if I take care of my body the way I know how, even if it doesn't result in the weight loss I'd like to see. Overall it's better for me to improve my health then focus on just my weight.

5. People are going to judge you

By nature I'm a people pleaser, but I also have a low tolerance for B.S.  These two characteristics give me an interesting personality, and in the long run I think that has helped me get through being sick. People judge me all the time. They judge that I'm not skinny enough, the judge that I haven't accomplished enough, they judge that I sit around all day and don't do anything, they judge that I can't work etc. etc. etc. It used to bother me that I was being judged so much, but then I realized people are going to judge no matter what. I don't have to tolerate their judgement, I'm just going to get over it, move on, and dwell on the important people in my life.

Wednesday, February 11, 2015

Do you believe in magic?

It happened again, that oh so subtle Facebook message from someone I knew years ago. Did I know about the magical product they sell that can cure me? So many people with insert any disease here have had their whole lives changed! The scientists haven't cured it but the Native Eskimo Tribe from Antarctica has done it! And even better the product only costs $99 a month (for 10000 months, see product for details). It's a steal at that price and everyone, absolutely everyone is trying to get their hands on it!

Essential oils, shakes, vitamin supplements, organic produce, goat turds, rare water from an unknown spring in the Bermuda Triangle, you name it and someone has tried to sell it to me. Because apparently I look like I have ten thousand dollars to spare on a treatment that is based on no research whatsoever. Many of these people are genuinely trying to help me out and I appreciate that. They have a friend of a friend of a cousin who has "health problems" like I do and it worked for them. That's great for them it really is, but I need proof before I waste what little money I don't already spend on healthcare on magical cures. And of course there are the sales people who are not genuine at all. They hear through the grapevine that I have "health problems" and they jump at the chance to sell me their product. Essenial oils reps are the worst at this.* I like EOs, you will have to pry my peppermint EO out of my cold dead hands, but I use it to lesson headaches and not as a cure. The salesmen have gotten so bad I want to tattoo on my forehead "Essential oils can not cure my disease." The FDA has had to actually stop essential oil companies from claiming they could cure Ebola. This is the kind of nuttery I have to deal with.

I'm not completely against natural options for health, I will go to the grave swearing of the awesomeness that is gripe water for babies with colic. As I've admitted before I am skeptical of wild claims of magical cures, but I do think there are natural options that can help me cope with my disease. The problem is finding the legitimate ones. Since the body of real research is a bit thin, natural treatment often involves trial and error which of course involves spending lots of money.

Once again it seems that the loser in all this is the sick people. We've been abandoned by the health system and we don't know what to do. Doctors refuse to help us, insurance companies don't want to pay our bills, emergency rooms think we are drug addicts, what are we supposed to do? People are so desperate to get better that they will try anything. It's sad and infuriating and makes me want to scream about the injustice of it all, until I go get my orange essential oil and then I'm all good, because essential oils fix everything.

Thanks to my sister who also suffers from the attack of the natural cure salesmen. Our conversation inspired this post.

* There are exceptions of course. I know one rep for EO who has been super helpful and not pushy at all. She's merely made the information available to me and let it at that. If only the rest were so respectful. 

Monday, February 9, 2015

Making progress in my health

So this is what I did yesterday for a church function. I had help (the gorgeous cake balls for example are not mine) but I was the head honcho and did most of the baking and organizing. Today my legs area pretty sore from all the running around in heals (why I chose to wear heals when I knew I'd be on a feet for two hours is a mystery to me), but other than that and the state of my kitchen I'm doing well.

All of this made me realize that I've made a lot of progress since I first got sick. Part of it is that I've learned to function under a great deal of fatigue and pain (parenting with chronic illness doesn't give you a choice). Another part of it is that I have seen some progress in improving my health. Though my pain level is still high, I have a lot more energy than I used to. I also recover faster when I overdo things than a few years ago. I think some of the lifestyle changes I've made (eating better, doing yoga for exercise, pacing myself, letting go of perfection etc.) are finally starting to pay off. I still have really bad days where I can hardly function and even bad months, but overall I am doing much better than I was at this time even last year. What a relief.
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