|I'm Angry and I Know It (Wiggle Wiggle Wiggle)|
As I stated before, I try to keep this blog fairly research and education oriented, but sometimes I let the bad shine through all that "just keep swimming" and "I'm hanging on" and "I'm so grateful I don't have cancer" crap. I usually do feel that way, but not today. Today is one of those angry days. I am, in fact, human - and I do, in fact, have a debilitating terrible illness that has completely incapacitated me and taken everything from me except my family (thank God I still have them). And I do have many wonderful blessings in my life (like my amazing kids, my husband - even when I want to kick him in the nuts, my family, and a roof over our head, etc...). But this post is not about that.
Today is the 7th, which I hate every month and allow as a designated pity party day - because the 7th of January is when my 9 month hospital stay from hell began in 2011. I have been bed and house bound since, so that's....(counting in my head)....16 months? Sixteen mother frakking months indoors and sick, except for doctor visits and hospital stays. Another month has gone by, and I'm actually worse health wise and feel sicker and weaker than the previous month, just like I did last month, and the month before. I have been steadily declining, all while getting testing, making rounds to countless appointments, ER visits, and waiting waiting waiting for follow ups and answers. Add to that the 8 years prior of POTS (which by the way, has robbed me of three careers now), plus a few other fun diseases that I dealt with on a more functional level - and I'm over it.
So after getting off Facebook because it sickens me to see all the pretty pictures of everyone outside doing fun things with their friends, family, and kids - or reading petty lame complaining by people that have no idea how lucky they are just to be healthy - I needed to write something so I don't actually explode from frustration and anger at this current crap load of shitty symptoms and circumstances we are dealing with. So here's what is pissing me off about my health, situation, most of the people in my life (or that really are not anymore), and what you may want to think about if you have a friend or family member who has a chronic illness:
Firstly, I am not feeling better. I may be happy on most days, and attempt to keep my head up (which can literally be a challenge with POTS), and have a positive attitude, but that does not mean I feel better or am any better physically. It just means I am ignoring my physical illness and discomfort as much as I can. I actually feel worse. My symptoms have gotten to the point that I can barely stand for a minute before starting to black out, and the smallest activity leaves me curled in the fetal position in pain and shaking from muscle fatigue, sometimes for a week after over doing it. Over doing it means standing up a few times from my reclining wheelchair attempting to make coffee.
Secondly, I do not get to leave the house. So if you give any kind of crap about me and my family, take 15 minutes and come visit. I can only handle 15 minutes, because my asshole of a disease has decided to affect my lungs. So verbal interaction - including the phone and visits - leave me with massive lung pain, the inability to talk, and feeling breathless for a good long while after. Plus the whole fetal position/shaking/pain thing. But that does not mean I don't enjoy a 15 minute visit. And frankly, to those of you who are local, and haven't been able to find 15 minutes to stop by - shame on you. It disgusts me. If I had a friend in the same situation, I would not treat them the way I have been treated by many of our so called "friends". So you live and learn who they are - but it still hurts, and thinking you are doing the "best you can" or coming up with lame excuses for not visiting doesn't cut it with me anymore, because EVERYONE has 15 minutes. You are choosing to be a self absorbed dickhead.
The one thing this situation has afforded me is the freedom to speak my mind (can you tell?) and voice my opinions without apologizing, because I really have nothing to loose at this point - it's already gone. It's very freeing. But I'd rather it be about politics or religious controversies - not about asshole people abandoning me and my family when we need you the most. It's like we've been forgotten, or are deemed "not cool" anymore because of my illness. Many of you had plenty of time for me/us when we could go out drinking, or I would give you a business referral, or had my new fancy Loft Club opening downtown. You see - you needed something from me, so were extra nice, and fake, and full of shit. Now those things are gone - why bother staying in touch? And since I can't go anywhere, and my husband has to plan around my health and kids - I guess there is no need to invite us to anything. Even church groups we were involved with have gone silent, because you see after so much time passes, people forget. They are so caught up in their own lives - they just plain forget.
But those people were never friends to begin with, so I mourn them the least, though I do miss the socializing, and I REALLY miss working and feeling like I was accomplishing things. What really hurt me while I was hospitalized, and now - are the people I just knew would be there - I just knew they would find time to call or text - or even visit. But they have not. And this includes some family and long time friends as well.
See with POTS and many chronic illness, you can't predict how you will feel from day to day, sometimes hour to hour. I feel completely different with a varying intensity of symptoms at any point in the day. That's one of the hardest parts. So yes, I have cancelled and had to reschedule a few times - but I am still here. And most don't seem to get how much damn preparation goes into getting ready for someone to come over, so when you cancel last minute, or just don't show up for some lame reason you come up with later - it really is annoying and hurtful. It takes all I have to get dressed, do my hair, and try and look presentable, and I am left in a state of symptomatic hell - all for a no show. I'll do it gladly to spend time with friends and family, but cancelling last minute is shitty. If you don't think you can make it, at least have the courtesy to cancel the day before. We also can not handle last minute plans - again - due to the massive amount of preparation needed to do anything. So just popping in, or swinging by when you find time in your self important schedule is not ok.
I do not have leprosy, and neither does anyone you know most likely who is sick. You are just being a jerk, and justifying abandoning your family or friend to take care of yourself. Because most of us that are chronically ill just want to be thought of - and 15 minutes says that. It's not asking much. Taking the time to plan a visit in advance, with the understanding that it may need to be cancelled by either party - with a good amount of notice, is not asking much. So if you are not doing it, you are just plain an asshole. There, I said it. I'm angry and I know it (wiggle wiggle wiggle).
The people who have been the most supportive are either local recent acquaintances, or far away long time friends - and they have been awesome. But how sad that our local peoples are gone, or I guess never really existed in the first place.
On to another subject (are you still reading this rant? It's long!): how much I HATE my disease. I know POTS is not technically a disease, and Dysautonomia is kind of a general term, but whatever the hell is causing it is sure is a disease - supposedly for me it's Autonomic Neuropathy - most likely Autoimmune based. We'll see. Whatever the hell it is has taken on new and fun forms that I just love living with.
I can deal with (or have gotten used to) the standard heart racing, adrenalin sympathetic nervous system surges out of nowhere, massive fatigue, and the whole not being able to stand of walk for more than 60 seconds thing. What's really pissing me off is this whole lung pain and the massive recovery time after doing anything I require - usually days or a week, maybe with a trip to ER for fluids to speed recovery up. Actually any motion at all sometimes now causes my BP to crash, even reclined. It has robbed me of playing with my kids, being able to lift my baby from my wheelchair into her crib, and reading or singing with my munchkins. To add to the fun, my hair has now been falling out for about 4 months, and it was thin to begin with. I am also now sick feeling every time I eat, and most of my days are spent with severe stomach pain. Not to mention the muscle and joint pain from inactivity just keeps getting worse, along with the inevitable weight gain from popping out a kid and then being stuck not able to do anything cardiovascular. I just took my water boarding lay-in-the-tub-and-try-not-to-drown-or-pass-out bath/shower hybrid, and now all I am capable of is laying back on my bed with my laptop propped up typing this angrily. I will not be able to build the train my son and I had discussed earlier, or roll around in my wheelchair to sit in front of the balcony door to get fresh air with with baby. All because of a "shower".
|I swear that's me in the garden.|
Lastly in my rant (which by the way I'm feeling much less angry now - amazing how therapeutic writing can be!), I am angry - and actually I think just plain old sad - at how grim and lame my current situation and future looks. I can't be a good Mom, Wife, or even daughter - and not in a 50's chauvinistic way, just in the fact that I have to be taken care of. I can't take my kids to the park, or the Easter Egg Hunt that was today, or go on a date with my husband, or anything! My son has started asking why I can't go, and saying, "you're not sick, lets go" when I try to explain why Mommy's lame ass has to stay home yet again and miss something else. They have to hang out with me in bed, and sometimes I can manage playing on the floor - but I have to factor in being well enough to care for my baby alone during the week so I can't overdo it and crash, or we are screwed. Finding that balance is tough (frakking toughness again!) - play now and pay later, or be lame and watch a movie with the kids in bed to be safe. And I really just want to not cry when I see another Mom from my vantage point on my stretcher during medical transport to a doctor appointment out walking her baby. And my parent's are uprooting their lives to move down here to help take care of me - but it should be the other way around! How lame that I really do need my Mommy, and I thank God for her and my Dad, but the guilt and anger at the situation is crushing. They are earning major depends changing points when the time comes though, so bonus for them (not).
I'm thankful to get a small disability check - but I had BIG plans and goals for my future, and being on disability was not one of them. We survive, but we are not by any means comfortable financially. And what can I contribute? A frakking lame check for being sick. All the passions I have are very physically demanding - I wanted to either finish my doctorate in marine biology or get my masters in landscape design, and that is not happening any time soon, if ever. Even if I get back close to where I was before, the unpredictability of this disease makes holding a career or finishing school tough. That is why I had left graduate school, then teaching, and then opened my own business - so I could lay down on the couch in my studio if I needed to, and come up with excuses to reschedule meetings if I was sick that day. But I was on my feet 16 hours a day for weeks on end sometimes, and that is definitely NEVER happening again - and I don't think I'd want to do that again if I even had the option. The point is, no one knows what the hell is wrong with me, I keep feeling worse and worse, and my future health status is completely unknown - and the scares the shit out of me.
I was taught that anger is secondary to another emotion, and in this case for me, it is fear and sadness. I prefer angry, it feels more empowering and kick ass - but it gets tiring. When it comes down to it, I'm a physically sick, sad, frightened chick who just wants to know that I have a future worth living, and can be there for my family (all of them!).
So eff you POTS, or whatever you are - and eff all you people who have not been there for me (and my family) when you should have, and eff having to be grateful and optimistic all the time.