it's a meme
Sep. 16th, 2016 07:54 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
baronessekatOver on Facebook it is something like "hidden illness awareness" day or the like. I see people I know and love answering this quiz like meme about what it's like living with a hidden illness. I read their answers and am proud that they are brave enough to share.
But then I beat myself up because I know my severe depression, my non-stop headaches and severe allergies would technically fall under "hidden illnesses". But I read their answers and know that my answers would seem lame compared to theirs. The voices make it seem like it's a contest and I'm a loser. That's part of my hidden illness. My constant inner battle against the voices that tell me just how bad and worthless I am.
I am not schizophrennic, but when I write sentences like the last two I know it sounds like I am. But I have no way to otherwise describe the constant inner battle I have.
I don't take daily medication for my illnesses. If I did, I would be in a constant state of being unable to function to make a living. I would not be able to accomplish any ADL's let alone be a "responsible adult" and earn a living or be social.
30 Things About My Invisible Illness You May Not Know
1. The illness I live with: severe depression (sometimes with suicidal ideations), constant headaches/migraines, severe allergies, asthma
2. I was diagnosed with it in the year:
Depression = officially 2007.
constant headaches/migraines = When I was in my twenties they finally diagnosed with Migraines and Cluster Headaches when I was in my early twenties after many tests. It took that long because I was getting both at the same time and most of the time women don't get cluster headaches. Even then, a pain clinic tech reading my mri asked "are you sure you're not in severe pain right now?" when I went in for a baseline reading.
severe allergies - first allergic reaction with anaphylactic reaction was age 6 months when I was first given soy milk.
asthma - age 14.
3. But I had symptoms since:
Depression = I've been battling it quietly since a child. I remember having suicidal ideations starting around age 8.
constant headaches/migraines = I started getting severe with the onset of puberty.
severe allergies - first allergic reaction with anaphylactic reaction was age 6 months when I was first given soy milk.
asthma - age 14.
4. The biggest adjustment I’ve had to make is: dealing with the constant exhaustion from battling the pain. reading every damn label
5. Most people assume: I don't know. I always think they think I'm a picky eater when I say I can't eat something.
6. The hardest part about mornings are: that it starts so damn early
7. My favorite medical TV show is: M*A*S*H*
8. A gadget I couldn’t live without is: My phone and my inhaler
9. The hardest part about nights are: that I want to stay up and do things but the exhaustion causes me to go to bed by 9:30 most nights
10. Each day I take: a couple hits off my inhaler
11. Regarding alternative treatments I:
Depression: sunshine, Vitamin D, puppy snuggles
migraines: protein, electrolytes, pressure wraps around my head and eyes, sunglasses indoors
allergies - avoidance
asthma - coffee and avoidance when possible
12. If I had to choose between an invisible illness or visible I would choose: Invisible,. I neither want nor need your pity
13. Regarding working and career: I do it because bills need to be paid
14. People would be surprised to know: I am in constant pain and terrified to eat anything I am not 100% familiar with. That I am absolutely terrified of social situations and being rejected and that deep down I am shy and scared. When I mention that bit to friends they blink and go "no way... you are so strong and independent and outgoing"
15. The hardest thing to accept about my new reality has been: I have to force the social life.
16. Something I never thought I could do with my illness that I did was: keep putting one foot in front of the other. Telling myself that my friends/family don't need the issues of me being selfish
17. The commercials about my illness: annoying.
18. Something I really miss doing since I was diagnosed is: Eating anything I want.
19. It was really hard to have to give up: I don't know. I would love to eat oranges or chinese food. they smell so good.
20. A new hobby I have taken up since my diagnosis is: the SCA
21. If I could have one day of feeling normal again I would: no clue. Since I've had severe allergies all my life I don't know "normal". And I do the things I want, regardless if it will acerbate my headaches. Maybe if the depression were gone I wouldn't be so shy.
22. My illness has taught me: read labels, do it anyway, be aware of your surroundings
23. Want to know a secret? One thing people say that gets under my skin is: "Are you sure you're allergic and just not eating because you don't want to try it?" or any of the 100 smart-ass comments I get when someone sees me wearing sunglasses in the office because I'm trying to not have the protomigraine transform due to the florescent lights.
24. But I love it when people: Initiate an activity. I always feel like I'm being a burden when I ask someone to do something with me.
25. My favorite motto, scripture, quote that gets me through tough times is: "suck it up cupcake"
26. When someone is diagnosed I’d like to tell them: There is life after diagnosis
27. Something that has surprised me about living with an illness is: when people remember I am allergic to something. I once hear a friend say "we can't go there, there's nothing on the menu that Ekat can eat" when trying to figure out a place to go for dinner after an event. I nearly burst into tears.
28. The nicest thing someone did for me when I wasn’t feeling well was: held me while I fought the pain and all I could do was cry
29. I’m involved with Invisible Illness Week because: all the cool kids are doing it
30. The fact that you read this list makes me feel: like I'm whining.
But then I beat myself up because I know my severe depression, my non-stop headaches and severe allergies would technically fall under "hidden illnesses". But I read their answers and know that my answers would seem lame compared to theirs. The voices make it seem like it's a contest and I'm a loser. That's part of my hidden illness. My constant inner battle against the voices that tell me just how bad and worthless I am.
I am not schizophrennic, but when I write sentences like the last two I know it sounds like I am. But I have no way to otherwise describe the constant inner battle I have.
I don't take daily medication for my illnesses. If I did, I would be in a constant state of being unable to function to make a living. I would not be able to accomplish any ADL's let alone be a "responsible adult" and earn a living or be social.
30 Things About My Invisible Illness You May Not Know
1. The illness I live with: severe depression (sometimes with suicidal ideations), constant headaches/migraines, severe allergies, asthma
2. I was diagnosed with it in the year:
Depression = officially 2007.
constant headaches/migraines = When I was in my twenties they finally diagnosed with Migraines and Cluster Headaches when I was in my early twenties after many tests. It took that long because I was getting both at the same time and most of the time women don't get cluster headaches. Even then, a pain clinic tech reading my mri asked "are you sure you're not in severe pain right now?" when I went in for a baseline reading.
severe allergies - first allergic reaction with anaphylactic reaction was age 6 months when I was first given soy milk.
asthma - age 14.
3. But I had symptoms since:
Depression = I've been battling it quietly since a child. I remember having suicidal ideations starting around age 8.
constant headaches/migraines = I started getting severe with the onset of puberty.
severe allergies - first allergic reaction with anaphylactic reaction was age 6 months when I was first given soy milk.
asthma - age 14.
4. The biggest adjustment I’ve had to make is: dealing with the constant exhaustion from battling the pain. reading every damn label
5. Most people assume: I don't know. I always think they think I'm a picky eater when I say I can't eat something.
6. The hardest part about mornings are: that it starts so damn early
7. My favorite medical TV show is: M*A*S*H*
8. A gadget I couldn’t live without is: My phone and my inhaler
9. The hardest part about nights are: that I want to stay up and do things but the exhaustion causes me to go to bed by 9:30 most nights
10. Each day I take: a couple hits off my inhaler
11. Regarding alternative treatments I:
Depression: sunshine, Vitamin D, puppy snuggles
migraines: protein, electrolytes, pressure wraps around my head and eyes, sunglasses indoors
allergies - avoidance
asthma - coffee and avoidance when possible
12. If I had to choose between an invisible illness or visible I would choose: Invisible,. I neither want nor need your pity
13. Regarding working and career: I do it because bills need to be paid
14. People would be surprised to know: I am in constant pain and terrified to eat anything I am not 100% familiar with. That I am absolutely terrified of social situations and being rejected and that deep down I am shy and scared. When I mention that bit to friends they blink and go "no way... you are so strong and independent and outgoing"
15. The hardest thing to accept about my new reality has been: I have to force the social life.
16. Something I never thought I could do with my illness that I did was: keep putting one foot in front of the other. Telling myself that my friends/family don't need the issues of me being selfish
17. The commercials about my illness: annoying.
18. Something I really miss doing since I was diagnosed is: Eating anything I want.
19. It was really hard to have to give up: I don't know. I would love to eat oranges or chinese food. they smell so good.
20. A new hobby I have taken up since my diagnosis is: the SCA
21. If I could have one day of feeling normal again I would: no clue. Since I've had severe allergies all my life I don't know "normal". And I do the things I want, regardless if it will acerbate my headaches. Maybe if the depression were gone I wouldn't be so shy.
22. My illness has taught me: read labels, do it anyway, be aware of your surroundings
23. Want to know a secret? One thing people say that gets under my skin is: "Are you sure you're allergic and just not eating because you don't want to try it?" or any of the 100 smart-ass comments I get when someone sees me wearing sunglasses in the office because I'm trying to not have the protomigraine transform due to the florescent lights.
24. But I love it when people: Initiate an activity. I always feel like I'm being a burden when I ask someone to do something with me.
25. My favorite motto, scripture, quote that gets me through tough times is: "suck it up cupcake"
26. When someone is diagnosed I’d like to tell them: There is life after diagnosis
27. Something that has surprised me about living with an illness is: when people remember I am allergic to something. I once hear a friend say "we can't go there, there's nothing on the menu that Ekat can eat" when trying to figure out a place to go for dinner after an event. I nearly burst into tears.
28. The nicest thing someone did for me when I wasn’t feeling well was: held me while I fought the pain and all I could do was cry
29. I’m involved with Invisible Illness Week because: all the cool kids are doing it
30. The fact that you read this list makes me feel: like I'm whining.
![[identity profile]](https://www.dreamwidth.org/img/silk/identity/openid.png){kind=small}
(no subject)
Date: 2016-09-17 01:02 pm (UTC)(no subject)
Date: 2016-09-19 12:44 am (UTC)(no subject)
Date: 2016-09-17 08:21 pm (UTC)I also suffer from depression. It sneaks up on you and tells you things that you figure everyone else is too nice to tell you. Depression is a pathological liar. If we had a better healthcare system, depression would be under a doctor's care until it learned the difference between fantasy and reality. I currently take 3 meds (2 in the morning and 1 at night) and I do feel more like me. I'm not going to be an over-sharer but that's a personal thing that drives one of my friends batty. I'm so used to living alone and dealing alone that I just solve my own problems. But most people want to help and if they don't they really aren't friends.
Everyone whines. Then you pull up your big girl panties and deal with it because that's what you do.
(no subject)
Date: 2016-09-19 12:43 am (UTC)I've looked a little into the new immersion therapy but am leery. Mostly my severe allergies are such that I'm now scared to do it. And my worst allergy is Soy. 43 years after that diagnosis I am still VERY allergic. To the point that I am part of the .0000000000001% (or some similarly ridiculously small percentage)of soy allergic people who are also allergic to Soybean oil (aka vegetable oil).
I used to be on meds for the depression. But it messed more with my body chemistry that I just couldn't function both mentally and physically. We tried several different meds and I just said "enough". At least I have learned to start recognizing when the mind set is "that's the illness talking". It may take a bit, but I do recognize it. May not be able to readily act against it, but recognizing that it's the illness is the first step.
The other one that's been an issue is aspathame. It's in EVERYTHING now as a additive other than a sweeter substitute. thus read all the labels.
(no subject)
Date: 2016-09-19 01:04 pm (UTC)I have problems with it too.
(no subject)
Date: 2016-09-19 01:02 pm (UTC)You are not whining, this isn't a contest. I hadn't realized that your migraines were almost constant.
(no subject)
Date: 2016-09-19 01:23 pm (UTC)When I was in my twenties and they were trying to diagnose me they sent me for MRIs to figure out what was going on. I had to go in first when I 'wasn't in pain' and the tech watching the screen actually asked me "are you sure you're not in severe pain right now?" to which I replied, I'm a bit uncomfortable but this is my "normal". It's, for me, low level annoyance that I can more or less tune out. So when I say my head hurts, from what I'm told it would be close to crippling in someone without my constant state.
They have no idea why I have such constant headaches. No tumors, my BP is scarily normal - though strokes run in my mothers side of the family, and my "hormones are hormoning normally". All they can think is that when I hit puberty there is a part of my brain that can't deal with the adult hormones and the way I register a change in normal hormones it is as pain and that it gets worse as my body reacts to weather pressure changes.
(no subject)
Date: 2016-09-19 04:40 pm (UTC)I could have happily lived without the marching band opening the all agency staff meting this morning. The room isn't spinning and I am not throwing up ... so I can finish the day at work and go to my therapist appointment.
(no subject)
Date: 2016-09-23 07:20 pm (UTC)Would this fit as a description? "My doubts always murmur in the background. Usually, I manage to drown them out, but sometimes, they scream in my face and are so loud I cannot hear anything else."