Monday, September 24, 2012

Debbie Downer for Being Sick of Being Sick?

Fall is definitely here! The leaves have already been changing! :) I woke up today and it was actually cold and I needed to get a jacket. :)  Usually I feel better in winter, but last winter was really rough on me. I got strep and then erythema nodosum....Ouch. I hope I do not have a repeat of that.

I am already noticing that my heart has been racing a lot more. I have been getting periods where it just takes off for no reason. It has me concerned but what can I do about it? It's not like I can flip a switch and be better... I have been getting worse and worse this year despite my efforts with supplements, natural treatments, detoxes and rx drugs. Nothing has been working...

In real life, I don't like to talk about my problems with people because no one wants to hear things like this...What's the point when there is no end in sight? It's not like there will be a cure for POTS in 5, 10, 15 or even 20 years. As I get sicker, it is becoming increasingly harder to cope with. Most people are only interested in hearing about illness for a short time, but when an illness has been going on for years, they don't really want to hear about it anymore. You are old news and annoying.

Because of that, Facebook and this blog are the only places where I can vent and talk about what I am feeling with complete honesty.

On FB the other day I was accused of no longer listening to God's word and that I must have stopped going to church because I was being a debbie downer in my posts...Huh?...This does not make any sense at all to me. I am NOT about to be condemned for feeling and living sick. I do not subscribe to any theology that blames sick people for being sick. God does not give us sickness to teach us lessons.

Some people really need to get a grip on themselves. You see someone hurting and in sickness and all you have to offer is condemnation and some lesson on the Devil? How about having some compassion, love or even offering to pray for them?

On FB, I usually post random things about health, cats, weather, God, songs, etc. The last few weeks I have been posting links to some interesting threads on DINET that I could relate to and I shared some stories for Invisible Illness week. I normally don't post about stuff like that, but I thought there were some good things out there. I like posting about the emotional struggles we face when one suffers from a chronic illness.

Oh and I've also shared this amazing KittenCam on Youtube. OH MY!! Check it out. You will be addicted. :)

One of my "debbie downer" status updates was written after going to Kohl's and suffering with terrible symptoms.

I really needed some jeans. I haven't bought a single pair of jeans for more than 3 years. We are going to a Christian healing meeting and conference coming up in October and I realized I did not have enough clothes to wear to a conference for 3 days...haha! Normally I wear the same clothes over and over again because I don't make public appearances very often and I'm not seeing the same people. I figured showing up in the same old, worn pants might be a bit weird.

I hate shopping because of my health problems. I can't even remember the last time I went to a mall. I think it's been about 3-4 years. The only shopping I do is grocery and necessity shopping like getting cat litter, cat food, prescriptions, toilet paper etc. You get the idea. I don't go on day long trips where I come home with bags and bags of jeans, shirts, shoes and other stuff. All that walking, stooping down, reaching up for items, standing in line is awful.

Before we got to Kohl's I looked online to see which pants might work, so I knew where to start... There was no way I could walk around Kohl's, trying everything on I could find, so I had to narrow it down to 2 or 3 styles. That's all my body can handle.

Trying on and putting on clothes has always been a major trigger for POTS. When I get dressed in the morning, it takes all of my effort not to collapse. It's not that my BP drops, but I feel like the life within me begins to fade away.

So I start trying on jeans and immediately knew this was not working out well. I felt terrible. My heart was in the 170's. I had to rest on one of their mannequin displays. ;) I had shortness of breath, began to tremble, shake, sweat profusely, felt wired and thirsty yet had to pee all at the same time... I could not do any fine motor movements at all. Texting on my phone was impossible. I kept smashing like 5 keys together. Everything was so unsteady. The first 2 pairs of pants I had tried on were a bust, so I had to keep pushing through and looking. I started to slouch, sighed a lot and was even dragging my feet as I walked. I looked sweaty in the face as if I had been running a marathon. I have to believe marathon runners feel better than this because I don't think they would keep doing them otherwise! HAHA!

I finally did find pants that I liked, but I was too sick to try them on and compare, so I just bought them. I got home and realize I probably needed to try the smaller size and compare...NOO I have to go back now!?! I was considering of bringing my video camera along next time to show people how much I suffer while trying to do normal things. I dunno if Kohl's would allow it, but I think I'm gonna try.

So after that entire experience, yes I made a FB status update that said,
"I went to Kohls today to get some jeans and I felt terrible. Made me realize just how sick I really am. :("

I can't pretend I don't have POTS! When someone suggests something along those lines, I have to assume they don't believe you are really that sick. Doesn't that already mean I'm doing a good job at pretending? lol I also feel like you cannot possible be feeling compassion for what I am going through. No one would ever tell someone with cancer to pretend they did not have cancer. No one would ever tell a blind person to just think more positively, so he might be able to see! That is completely absurd....

After coming home from Kohl's, I was wrecked for the day. I had massive head pressure and a headache that did not go away until I went to bed that night.

One good thing did come out of it, as I was walking around, feeling dreadful, I started to have flashbacks to times in my youth where I felt the same exact way. It was as if I was being reminded that I have been sick for a very long time as early as age 5. My mom used to do day long trips to malls and I hated it. I would lie down on the ground, cry, scream and throw fits.  I thought I was just a brat, but walking around Kohl's the other day, I knew it was just POTS showing itself...

I'm not entirely sure where to leave this post, but for the past 7 years I have been doing the mental gymnastics to keep myself going. The 5 years before that, that I graduated from high school, went to college and worked full time. I'm not a quitter. I'm not someone who just gives up and pouts. The reason I'm not in a wheelchair or lying around in bed all day looking more sick is because of my willpower.  I struggle with POTS in every aspect of my life and have made as much good out of it as I can. Is it wrong to want more and be upset with where I am right now? I don't think so.

For 12 years doctors have told me I was faking, crazy, lazy, just anxious,"too stressed", that I needed to get a job, was a drug addict, needed to just start having babies and all of these horrible things. To then have a friend tell me that I was letting the Devil win by having debbie downer posts, it is really not very caring or compassionate at all. I can't just pretend POTS away...Don't you think I would have done that, oh I dunno, like 5 years ago when I started this blog? lol

My hope for healing and recovery is with God. I know that he is my Healer. He has already shown me with what happened with my cousin was not my fault. God is healing me right now in ways I cannot even explain here. I believe that the physical healing will happen too. And when God finally takes this illness away from me, then Glory be to Him. No one will be able to stop me, from shouting it from the rooftops!

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