I am sick. A lot. I hide it. Well.
I try not to complain. I really do try. I tell myself that others have worse problems. I’m fortunate in many ways. But that doesn’t mean my problems aren’t important. So, for today, I’m giving myself permission to complain. A lot. I’m not hiding it. Not well.
I have a body full of bacteria and a weak immune system. I have lyme, and have also tested positive for all of the major co-infections that ticks carry. Lucky me got bitten by a tick with super powers. Oh, did I mention I also have lupus? And blood clotting issues that makes my blood the ideal environment for bacteria to thrive? When I get sick, I really do it right.
A recent illness required a trip to the ER. While lying around, I made a sick and tired list. It was therapeutic.
- I’m sick and tired of hearing “but you don’t look sick.”
- I want to not FEEL sick.
- I’m sick and tired of feeling weak for not being able to get rid of problems caused by a bite by something the size of a pin head.
- I want to feel strong for being able to get out of bed at all while my body is fighting so hard.
- I’m sick and tired of feeling like a guinea pig when a new treatment option comes out.
- I want off this hamster wheel.
- I’m sick and tired of being told that I always have a smile on my face and handle it so well. Don’t ask my family how I really handle it. They see me at my worst.
- I want to truly always have a smile on my face.
- I’m sick and tired of having liver damage caused by the bacteria.
- I want any damage to my liver to be caused by too much expensive wine.
- I’m sick and tired of brain fog making me forgetful. Wait, what was I going to say next?? Oh, now I remember…
- I want the only cloudiness I deal with to be weather related.
- I’m sick and tired of the random ups and downs of symptoms that come and go.
- I want to ride a roller coaster, not live one.
- I’m sick and tired of going to the lab for blood tests. And being told how bad my veins are as they poke me repeatedly to find a good one.
- I want to only be poked on Facebook. And even that can be annoying.
- I’m sick and tired of getting burned from forgetting sunscreen during a car ride while on medication that makes me sun sensitive.
- I want to get burned from having so much fun at the pool that I lost track of time and spent the entire day there.
- I’m sick and tired of telling my kids to see what is in the freezer because I’m too tired to cook.
- I want to have freshly baked cookies ready every day after school. …Yeah, that probably wouldn’t happen regardless.
- I’m sick and tired of taking horrible tasting pills by the handful.
- I want handfuls of M&Ms. They melt in your mouth.
- I’m sick and tired of spending so many hours in bed.
- I want a Tempurpedic. But I digress. I want to only need my bed at night.
- I’m sick and tired of my kids searching for socks that match because I haven’t done laundry.
- I want a laundry fairy. But, again, I digress.
- I’m sick and tired of a new treatment making me feel better temporarily. Without warning the improvement ends. It always ends.
- I want the end to be happily-ever-after.
- I’m sick and tired of counting spoons.
- I want a giant ladle.
- I’m sick and tired of cancelling plans with friends. Or hesitating to make plans in the first place to avoid having to explain why I am cancelling.
- I want to be a good friend.
- I’m sick and tired of being a source of information for friends concerned about having lyme. I enjoy helping; I don’t enjoy why I am knowledgeable.
- I want to have never heard of lyme. Just the green fruit.
- I’m sick and tired of doctors telling me I have a high tolerance for pain. That doesn’t make living with it any better.
- I want to be a wimp and cry over a stubbed toe because that is the worst pain I have ever felt.
- I’m sick and tired of trying to cram in everything fun on days when I am feeling well. I should have learned by now that doing too much at once ultimately makes me sick again.
- I want to have fun every day.
- I’m sick and tired of having an illness that I don’t want to discuss because it is so misunderstood and affects everyone so differently. If I hadn’t personally experienced it, I wouldn’t believe some of it either.
- I want it to make sense.
- I’m sick and tired of well meaning people telling me of a friend who tried “X” or a cousin who took “Y” and are perfectly healthy now. I have tried “X” and “Y” and also A-W.
- I want to find “Z.” I know that will cure me. It is out there. Somewhere.
- I’m sick and tired of doctors telling me I am a medical mystery.
- I want to be solved.
- I’m sick and tired of calling it lyme disease. Disease sounds too permanent.
- I want it gone.
- I’m sick and tired of being sick. And tired.
- I want health.
As an autoimmune disease(s) sufferer myself, I can really relate to this post. I don’t talk about it much, or even write about it. I think I just prefer to pretend it all isn’t happening (as if that’s even possible). I’m so sorry that you are suffering — here’s to healing and better health!
I’m so sorry you have autoimmune problems as well. I normally don’t talk about it much either but felt the need to vent after an especially frustrating week of illness. And I always say, there are certain topics I don’t normally discuss with even my best friends…but will blog about it for the world to see. Weird how that works! 😉 Wishing good health for you as well!
Mom: Thanks for the heart-felt sentiments… I have a few of those things in my “sick and tired” list, too! LA
I’m sorry that you have Lupus as well. You seem to have a great attitude about it. I love the butterfly photos on your website. Did you take them??
Thanks for the compliments about the butterflies, but they all come from my “adventures” hunting for them on the internet. I would never survive with the sun exposure it would take to take all those pictures. Many are from places far and wide across the globe. Alas, they are only caught in my “armchair” adventures!
I’m so sorry to read this. I have a little understanding, in that my husband has M.E. and I recognise a fair bit of what you are saying, but I can never fully comprehend without being ill myself, I know.
Life really sucks for some people. I hope you find bright spots in your day.
Thanks Tilly Bud! You know, it is what it is. Most days I’m fine with it. Just felt the need to vent while hold up in the ER!! I usually attempt to be a “laughing housewife” also!! 😉 Sorry for your husband’s illness also. Hope he is managing it ok.
He muddles along. You know how it is, you’ve just got to get on with it.
Venting is good 🙂
I’m so sorry to hear that you have autoimmune problems. I believe that most Lyme patients have one or more autoimmune disorders but they’re either not diagnosed or not serious enough to show specific signs and get a proper diagnoses.
I’ve also been diagnosed with a myriad of conditions only to find out this summer that I am in fact suffering with lyme disease and bartonella along with a long list of viral infections due to a weakened immune system.
Here’s just some of my diagnoses – Sinusitis, Pansinusitis, Spondilosys, Poli-Arthritis, lumbar discopathy F1-F2, sacroileitis, encephalitis non-infectious, conjunctivitis, anxiety, depression, OCD, ADHD, TMJ, mineral deficiency, chronic fatigue syndrome (CFS/M.E), fibromyalgia, candidiasis, epstein barr virus and human parvo viruses, bartonellosis, borreliosis.
I’m sending you a positive vibe and hope that you’ll have all the energy you need to heal you mind, body and soul.
I’m on an all natural protocol and started to feel a whole lot better after my last relapse… I’m slowly but steadily picking my health.
A.M, CEO
http://www.lyme.ws/
Great post! I’m sick and tired of being sick and tired too. As a fellow Lymie I can understand and sympathize with almost that entire list (although I don’t have kids yet, so it’s just my husband being told to check the freezer for food). I think the worst part is the not usually looking sick thing…I don’t look sick, but I feel like death warmed over almost daily…Venting is healthy though, I agree with Tilly Bud there…and it’s also good for other sufferers to hear of other sufferers who are suffering too…It makes the rest of us feel not so alone… So cheers to that!
Sorry to hear that you are having a rough time! I checked out your blog and related all too well to your posts also! Look forward to reading your future posts!
YOU just described MY every thought…regarding the LupusI know this is really wrong yet I am so Grateful to know someone really understands everything about this nasty, nasty thing called Lupus. Your list – for me – was better than the spoon theory. I do not have lyme disease but do have psoriatic arthritis as well as Lupus…your story IS my life. I just feel for you especially when it comes to your kids. I am fortunate as mine are grown…though all those things I can’t do for my husband affects me a lot. And today I was presented a most wonderful opportunity any one would love to have. My Dad asked me to come to Florida for about a month to help him & my sister move into there new house and I am freaking out about LUPUS and the Sun and the Heat and having days when I can’t get out of bed…but I AM going !!!I told Dad well “somedays I’m not so good – and I will need to take breaks..and you two can move the stuff & Ill do the packing & unpacking & he replied. No Problem I take a nap everday @ lunch time..It just really sucks to be scared to do something I’ve yearned for so long …spending REAL time with my Dad. And the only reason I am able TO GO is because I can no longer work because if …LUPUS. Thanks for letting me share & confirming for me I AM NOT CRAZY.
I’m glad you could relate to my “list.” I am also sorry that you could relate to my ‘list!” It does help to know there are others that understand, but you are right…it pretty much sucks! I really hope things go well for you in Florida! Make sure you stick to those naps! When I don’t make time for naps, that’s when I get really sick!
I clicked on this post from The Honest Mom Link-up. I love your honesty! Well done post!
Wow I had no idea you had to go through this. I really hope this is all behind you and just a distant memory now. It’s hard enough being sick, and tired, but having to Mom on through it, UGH.
Found you through Honest Mom. Feeling awful for you! You’ve taught me to be more sympathetic to moms (okay and other people, too) to not judge them for not looking sickly enough! Praying for you to get naps and a doctor who will solve your medical mystery!
Found you through Honest Mom. Feeling awful for you! I realized I’m guilty of not being sympathetic to moms (okay and other people, too) for not looking “sick” enough! Completely convicted right now. Praying for you to get enough naps and to find a doctor who solves your medical mystery!
Oh, I’m so sorry you’re on this sucky rollercoaster! You must be so tired and fed up. I hope you find your cure soon and all this mess becomes a distant memory.
LOL, I’m reading all of your Lyme posts now and I relate all too well. I am mild in symptoms right now, but once was very very ill with it. You’re not alone! Always know that.