Here are mine…
30 Things About My Invisible Illness You May Not Know…
1. The illness I live with is:
POTS. And no, not the kind you smoke. P.O.T.S. Postural Orthostatic Tachycardia Syndrome. Its’ a form of Dysautonomia – the Dysfunction of the Autonomic Nervous System. Who knows how I got it or how to fix it, but that’s what it is. POTS. So I can’t sit, stand, walk, talk, run, eat, or drink a lot at one time without all my blood pooling down in my legs, therefore giving the rest of my body minimal blood to work with -- not much getting to my lungs (can’t breathe), my digestive tract (can’t eat), my brain (can’t think), or my heart (so it speeds up like crazy!) Feels like someone is sitting on my chest, I’m being strangled, multiple pin-point “coat-hanger” headaches, and I feel like I'm about to pass out (pre-syncope) and am ultra fatigued all day long.
Because of this Hypovolemia effect – low blood volume - I need to take salt (3-5 teaspoons/day) with tons of liquids so I can build blood volume all day so I can function. A trip to the potty brings me back to square one as my body doesn’t hold salt (water cleans my body out of salt) so I have to drink water/take salt all over again. Drinking plain water can dehydrate me if I don’t add salt. One doc told me to drink pickle juice every day...which some days I do and it doesn't taste salty at all, so I know that day I needed more salt than others.
Because of the POTS and the Hypovolemia, I am very heat intolerant - duh - since sweating can dehydrate me to the point of passing out. And we're not talking marathon sweating. Just normal in the sun, outside having a good day perspiration. So I am locked up in AC all summer. In the winter, the humidity mixed with the cold makes everything hurt and I have the pre-syncope to deal with too... So odd, isn't it? Sometimes even I feel like I'm making this up...
2. I was diagnosed with it in the year:
About 5 years ago, a year after the 32 year old actress Brittany Murphy died. The news of her death and the long list of her symptoms were so familiar to what I had been dealing with, I became crazed to find a doctor who could help me. After I found the ONLY doctor my side of the Mississippi who specializes in POTS, I waited another 8 months for an opening, and I was finally seen. I waited a few more months for a Tilt-Table test, and was diagnosed within 3 minutes of the table being up-right. The fact he made me stay up for an additional 7 minutes is reason-one I’ll never do another Tilt-Table test again. Torture, no thank you.
3. But I had symptoms since:
Since I’ve become diagnosed with POTS and have done research on it, I have found that what I’ve been dealing with since I was 15 is all tied together: Endometriosis, Sciatica, not sweating (which I always thought was a blessing…). Thankfully the Endometriosis is no longer an issue.
4. The biggest adjustment I’ve had to make is:
Knowing the medical establishment CANNOT help me. No medication can help. Since it's a "syndrome" there is nothing that can be done. So where does that leave me? I have to take care of this myself. Period. Whatever it takes. So, if the only way to ‘cure’ me – so I can live my day to day without pain and suffering – is to up and move to San Diego (where my POTS doesn’t bother me AT ALL)… then I have to be SELFISH. This is a very hard adjustment for me: putting myself first. I have to make life altering decisions with me at the forefront. Impossible… However, if I don’t put myself first, then I won’t be around for those who need me. So I have to do it. I have to put myself first.
5. Most people assume:
That I’m totally healthy since I look nice and trim and fit and have long blonde hair… You’d be surprised to know the very doctor who diagnosed me with POTS said to me (years later when he hit a brick wall and didn’t know what else to do) said, “You’re young. You look healthy. Go enjoy your life.” WTF. I PUSH myself to look good/nice every day, but for me. Why? So when I look in the mirror, I don’t want see sick little ol’me. I want to see what I want to be – fine, okay, healthy. But that seems to backfire when even people closest to me ‘forget’ what I’m hiding by looking good and smiling through, so they push me to be more normal - go on long shopping trips, walk and stand around talking, normal stuff... When it doesn’t work because I can’t do it, they get upset and make me feel like I’m making this all up. “But you look fine!” they say…
6. The hardest part about mornings are:
Waking up totally dehydrated since I didn’t drink water/take salt all night. I can’t open my eyes (dry), my mouth is dry, my nose is dry, my legs are tight/hurt and my arms/hands feel like there are metal rods drilled through them, probably since I have limited blood flow to them… that’s my guess anyway. No doctor can tell me why.
Also, waking up to realize today is not going to be a good day. Some days I wake up and I’m feeling bad, but not so bad. Those days I can pretend I’m not sick, totally normal, and I can be myself: my boisterous, too-happy, silly-dancing, loud-singing, mornings-are-the-best-part-of-the-day, me! Those are the days I cherish and enjoy. But they don’t come in packages and they are few and far between. I hate all the other mornings when I wake up and I’m already at the end of my short rope. I hate having to say, “Sorry. I can’t do it,” and it’s not even 8am.
7. My favorite medical TV show is:
I used to watch the “Big C”, but I’m not really big into medical dramas.
8. A gadget I couldn’t live without is:
My phone. I can text my husband small snippets here and there like, “bad brain day o_0” or “I still can’t breathe” and just let those texts go on without me having to say it out loud and sound like a broken record. And then, when the bad moment has passed, I can text him that I’m good to go! Happy! Can breathe again! And feel as though someone is there with me for bad moments and cheering for me in the good.
9. The hardest part about nights are:
Thinking back on the day to all the moments when, if I didn’t have POTS, I would have been able to stand outside while my daughter road her bike, or take the dogs for a walk, or take my son to the park, or enjoyed alone time with my husband. But instead I had to say, “I’m sorry, I can’t. Having a bad POTS day. Again.” If I didn’t have POTS, I’d be all over the place! Jump out of bed, go for a run with the dogs, have a great day at work, go on a bike ride with the kids, cook dinner, EAT dinner and be able to breathe! And not complain all night – like a broken record – to my husband. But instead enjoy our quite moments together.
10. Each day I take:
No medications. Because I have POTS, meds don’t work the same in my body as they are supposed to. For about 9 months I took a pill that worked which I nicknamed “The MAGIC Pill”… because it worked, like magic! I could run, eat, live, breathe :) … Then it stopped working so I had to stop taking it.
So instead I… Drink salted lemonade -- 1:1 parts water (12oz) to lemonade (12oz) with 1 TSP of salt, 3-5 times a day, depending on how much salt I need. It really helps with the dehydration.
11. Regarding alternative treatments I:
I drink my salted lemonade all day, every day, and over salt my food and drink LOTS of liquids. No matter the odd looks and comments I get (because most people think salt is the devil). I have to do it if I want to function. I love to be physically active too, and for most POTS people, this can alleviate POTS a great deal. But it depends on the day/weather. If it's too hot - summer - or too cold - winter, I can't move from pain and not being able to breathe. In the Fall and some weeks in the Spring I feel great and can start being physically active again.
When I was taking my magic pill I tried to exercise 5x's a week (doc's orders). It took me 6 months to be able to do a whole Zumba class. But the thing is – I could do it! A whole hour of total excursion! It was great fun and got the blood moving for sure! On most days, 1/2 hour after I stopped moving I'd feel totally fatigued and wasted. But I like to hold on to the memory of feeling great and normal for that hour. I love that feeling so much that I push myself to do it many times a week, no matter how I’ll feel afterward. Some days are better than others (Fall/Spring).
However, when I’m in San Diego, I can automatically run like I never stopped running. My heart doesn’t speed up, I don’t feel dehydration pain, I'm NEVER fainty, I can just run up stairs and do anything like I’m normal again… Something about the barometric pressure there not changing much. Oh, the invisible forces of gravity...
12. If I had to choose between an invisible illness or visible I would choose:
not in the mood for this question today…
13. Regarding working and career:
People who battle an illness on a daily basis find employment a blessing and will be the best employees you have because they don’t take their job for granted. Don’t make them feel fear or shame for wanting to do their job. Most, myself included, only need a small adjustment to make working doable. So help them out!
14. People would be surprised to know:
That there are three 5K’s I wish I was running right now, that I hate being stuck indoors in the air-conditioning, and I DO NOT want to explain how I feel. Can we just pretend I’m fine and move on?... thanks… But yeah, I do still want you to understand that no, I can’t go stand in line at the mall with you and walk around and go shopping. Or go hiking. Or biking. Or kayaking. Or walking. Or stand in the hallway and talk. Or walk up the stairs… or eat the dinner you made… I hate this. I hate it! I hate it! I hate it! I hate it! I just want to be me again...
15. The hardest thing to accept about my new reality has been:
Reality. Honestly, I prefer to function in pure denial. I still, even after all these years, still think I’m going to wake up tomorrow and my POTS will be gone and I’ll be fine from here on out. I understand life without challenges makes us weak, but shit. I didn’t do anything to give myself POTS. I never did drugs. I never put myself in harm’s way and did something foolish to hurt myself. I can’t even drink a whole glass of wine without dehydrating myself because of POTS. I follow all the rules and do everything right and I got POTS. I can’t stand people who do foolish things and take their health and life for granted.
16. Something I never thought I could do with my illness that I did was:
Teach Zumba! I used to be a semi-professional dancer before I had to stop dancing due to sciatica. BUT…For a while, and not too long ago, I taught 3 zumba classes a week. That was while I was taking the “magic pill” that made me capable again ;). That was fun. Hopefully I’ll find a new treatment so I can get active again. I LOVE being active and enjoying life!
17. The commercials about my illness:
There are no commercials for POTS. It’s very unknown, misunderstood, and misdiagnosed. There is a documentary called “Changes: POTS/Dysautonomia” (on YouTube) that I found and was afraid to watch. I was worried it would spell out the end since every day I get moments that feel like the end… But it didn’t. It was positive and informative.
18. Something I really miss doing since I was diagnosed is:
RUNNING! Every time I’m in San Diego, I run on the beach every morning. In the Fall I can run once and a while, but not like when I'm in California. I also love to dance, be physically active and NEVER EVER rely on someone to help me up the stairs! Oh, I hate having to cater to POTS… I miss being able to go for a hike with my kids and take them to the park and be super mom! I was… Am… I’m not giving up the dream that someday soon I will be again. My kids deserve to have their mom back!!
19. It was really hard to have to give up:
My body. My body is not my own with POTS. It consumes every aspect of my being. Eating, breathing, walking, singing, dancing, talking. Bad POTS moments/hours/days can come out of nowhere and steal my body away. Without warning. Some days I have more moments to keep. Other days, I get them all taken away...
20. A new hobby I have taken up since my diagnosis is:
Is functional-denial a hobby? I’m just trying to hold onto my passions – writing, cooking, loving my family and taking care of Mother Earth :)
21. If I could have one day of feeling normal again I would:
Grow my garden. I used to have a really nice kitchen garden, compost and all. I had plans to add a chicken coop and bees. If I had a normal day, I’d get that all back up and running! Then I’d have yummy sun warmed tomatoes on the vine and fresh eggs in the backyard…
22. My illness has taught me:
I am worth a bit of selfishness. If I don’t feel up to it and know it’ll make my POTS symptoms worse, I say no and don’t feel sorry for it. If I can’t do it, I don’t. Some people have fallen off my radar, but those I love and need the most – my family and closest friends – are still with me. That’s all I need.
23. One thing people say that gets under my skin is:
“But you look so great!” “But look so in shape!” “But you look so young!”
24. But I love it when people:
Just by looking at me know – KNOW – that its’ a bad day and they don’t ask anything of me. It’s sad, but it’s a great feeling to know you’re understood by someone, somewhere, and you don’t have to pretend to be okay, just this once.
25. My favorite motto, scripture, quote that gets me through tough times is:
the one I made up about lemonade… :) "Life gives you lemons. Why live in sourness when all you have to do is add a little sugar? So go out and make some sugar in your life! Then instead of lemons to live with, you'll have lemonade to enjoy and share :)"
26. When someone is diagnosed I’d like to tell them:
Be your own advocate. I would have never been diagnosed if I hadn’t forced myself into doctor office after doctor office, looking for answers. You know your body best. If you think it’s not normal to not be able to breathe all day, then find someone who can help you! You might have to go through a slew of doctors, but you deserve answers. No one is going to take better care of you than you.
27. Something that has surprised me about living with an illness is:
How much more hard-headed I can become. When doctors and/or treatments aren’t working, I will be the squeakiest wheel ever to get my way – a better treatment… or a better doctor! “I WILL get better, damn it. Now, move out of my way!”
28. The nicest thing someone did for me when I wasn’t feeling well was:
Smiled sad along with my sad smile, held my hand and sat with me. It sucks. But it's nice not to have to do it all alone.
29. I’m involved with Invisible Illness Week because:
I don’t like to talk too much about it – I’d rather it too be invisible and not deal with it – but even I can’t hide the fact that it’s real. So, if everyone out there with an invisible illness spoke up and said something to bring light to the challenges they face on an hour by hour basis, then they won’t feel so alone. Not everyone will understand and be there for you. But you don’t need everyone. You just need those closest to you to know and understand.
30. The fact that you read this list makes me feel:
Wow. Thank you so much.
Please repost this or your own 30!
:)
