If you're a regular reader, you'll know that I'm a generally positive, happy person. I know this might come as a shock to some, but I'm still human! I have my share of pity party days and days when I'm angry or frustrated. Well, today is one of those days.
I've been dealing with chronic illness for my entire adult life, and I'm frustrated that so many in the medical community (and definitely the general public) are ignorant when it comes to dealing with "invisible" illnesses. Ask random people on the street what they know about ME/CFS, and you'll probably get blank looks or misinformed answers. I get even more frustrated when I hear from fellow patients whose stories of dismissive doctors echo my own.
I'm angry that I don't know what it's like to be a normal, healthy adult. I'm upset that I've spent over a dozen years and thousands of dollars searching for answers and relief only to be left with little to no relief, a lot less money, and even more questions.
I know I'm lucky that I've found a few awesome doctors who have become allies in my search for answers, but I've also had so many awful experiences with idiot doctors and nurses who think they know everything when in actuality they know very little. (One idiot doctor in particular almost cost me my life due to a misdiagnosis and ignorance of a particular medication's possible side effects.) I'm even annoyed that I feel "lucky" to have found good doctors. Shouldn't all doctors that we go to be good ones?
I feel hurt and frustrated when well-meaning friends and family tell me that, well, at least what I have isn't "more serious"/"fatal"/[insert something dismissive here]. "At least it's not [insert a more well-known illness here]" is equally dismissive and ignorant. What they're really doing is minimizing the impact my health has had on every single day of my entire adult life.
I'm also angry that very little progress has been made in terms of what we know about ME/CFS and other less common chronic illnesses. I started blogging in 2009 and had great hope that things would change for the better. Now it's 2013, and I have seen very little change.
When I started blogging, the iPad had not yet been released and people were still really excited about the iPhone 3G. Since then, the 2nd, 3rd, and 4th generation iPad models and iPhone 3GS, 4, 4S, and 5 have all been released and are old news. If we have phones that understand us when we speak and can act as personal assistants and speak back to us, why have we not made any real progress when it comes to ME/CFS and other chronic illness?
I still have hope that I will find answers to whatever is wrong with me. I'm not going to stop until I do.
Showing posts with label invisible illness. Show all posts
Showing posts with label invisible illness. Show all posts
Sunday, April 28, 2013
Tuesday, September 15, 2009
Blogging for Invisible Illness Week
Yesterday marked the start of National Invisible Chronic Illness Awareness Week, so I am blogging for invisible illness awareness.I was supposed to blog yesterday and write a meaningful post, but my CFIDS got in the way. I was just too tired. Go figure.
I am currently in the Midwest United States on a grueling week-long trip to five different cities for work. These trips are so tiring that I don't have much energy left for anyone or anything, including blogging.
Fortunately, my fever seems to have left me, and there is time between appointments and travel that I am able to take daily naps. I've also been able to eat some fantastic meals!
Anyway, I'm too tired to write anything more, so I'm going to take a nap. I should get back to my normal blogging next week when I'm back home.
Today's Activities: out of town for work. Today's Most Annoying Symptoms: exhaustion, drowsiness.
Mood (10 is best): 6
Energy (10 is best): 2
Physical Discomfort (10 is worst): 2
Monday, September 7, 2009
30 Things About My Invisible Illness...
From the Invisible Illness Week website:
We've all seen the list “20 things about me” “50 thing about me you didn't know…” They can actually be interesting if you want to get to know the person better! Well we've got one I haven’t seen anywhere yet, “30 Things About My Invisible Illness You May Not Know.”
Just copy and paste it below and put it up on your blog, send it to your friends, paste in on Facebook (if it’s too long put it in your “notes” section.)
Let’s spread the word about II Week this way and it’s a wonderful way to share a little bit about your life. And don’t forget to add the last paragraph for people know where to find us!
30 Things About My Invisible Illness You May Not Know
1. The illnesses I live with are: Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS...a.k.a. Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis (ME)), Irritable Bowel Syndrome (IBS), Polycystic Ovarian Syndrome (PCOS), asthma, and more...
2. I was diagnosed with it in the year: 2005, 1999, 2003, 1998, respectively.
3. But I had symptoms since: 2000 (probably earlier), don't remember, since puberty, 1996.
1. The illnesses I live with are: Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS...a.k.a. Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis (ME)), Irritable Bowel Syndrome (IBS), Polycystic Ovarian Syndrome (PCOS), asthma, and more...
2. I was diagnosed with it in the year: 2005, 1999, 2003, 1998, respectively.
3. But I had symptoms since: 2000 (probably earlier), don't remember, since puberty, 1996.
From this point on, I will be answering questions primarily with CFIDS/CFS/ME in mind.
4. The biggest adjustment I've had to make is: strictly limiting my physical activities and outings.
5. Most people assume: I'm young and healthy because that's how I appear on the outside.
6. The hardest part about mornings are: waking up
7. My favorite medical TV show is: House
8. A gadget I couldn't live without is: my two alarm clocks.
9. The hardest part about nights are: falling and staying asleep.
10. Each day I take 12-15 pills & vitamins. I also get regular allergy shots (immunotherapy) and additional shots for my CFIDS. See Current Medications and Supplements.
11. Regarding alternative treatments I: am open to them as long as data supports their efficacy and my physician approves their use.
12. If I had to choose between an invisible illness or visible I would choose: visible - people wouldn't question my illness if they could see it.
13. Regarding working and career: I will work as long as I am physically able. I am working to further my career as if I will be healthy the rest of my life. However, I live with the uncertainty that my illness may force me to leave the workforce altogether.
14. People would be surprised to know: I am a classically trained singer who was once on her way to an operatic career. Sadly, I no longer sing. I also wanted to attend medical school, but my illness forced me to choose another career path.
15. The hardest thing to accept about my new reality has been: all of my physical limitations.
16. Something I never thought I could do with my illness that I did was: become an advocate and meet with members of the US Congress on Capitol Hill.
17. The commercials about my illness: do not exist.
18. Some things I really miss doing since I was diagnosed are: international travel, martial arts, hanging out with friends.
19. It was really hard to have to give up: physical activity.
20. A new hobby I have taken up since my diagnosis is: advocacy for people with CFS.
21. If I could have one day of feeling normal again I would: cook, clean, and go grocery shopping so that my husband wouldn't have to.
22. My illness has taught me: patience.
23. Want to know a secret? One thing people say (especially when they know I am sick) that gets under my skin is: "You look good!" Of course, I look good on the outside. I have an INVISIBLE illness. I feel terrible on the inside.
24. But I love it when people: genuinely want to learn more about my illness.
25. My favorite motto, scripture, quote that gets me through tough times is: "Everything happens for a reason." (Also, "What doesn't kill you makes you stronger.")
26. When someone is diagnosed I’d like to tell them: there is a vast online community of others with this disease who understand what you are going through. There is no need to feel alone.
27. Something that has surprised me about living with an illness is: the amount of support that is out there, as well as the amount of disbelief that is out there.
28. The nicest thing someone did for me when I wasn't feeling well was: make me homemade chicken soup and bring it to me in bed (my husband Kenny has done this on more than one occasion).
29. I’m involved with Invisible Illness Week because: I am passionate about CFS education and advocacy.
30. The fact that you read this list makes me feel: wonderful.
Find out more about National Invisible Chronic Illness Awareness Week at http://invisibleillnessweek.com/.
4. The biggest adjustment I've had to make is: strictly limiting my physical activities and outings.
5. Most people assume: I'm young and healthy because that's how I appear on the outside.
6. The hardest part about mornings are: waking up
7. My favorite medical TV show is: House
8. A gadget I couldn't live without is: my two alarm clocks.
9. The hardest part about nights are: falling and staying asleep.
10. Each day I take 12-15 pills & vitamins. I also get regular allergy shots (immunotherapy) and additional shots for my CFIDS. See Current Medications and Supplements.
11. Regarding alternative treatments I: am open to them as long as data supports their efficacy and my physician approves their use.
12. If I had to choose between an invisible illness or visible I would choose: visible - people wouldn't question my illness if they could see it.
13. Regarding working and career: I will work as long as I am physically able. I am working to further my career as if I will be healthy the rest of my life. However, I live with the uncertainty that my illness may force me to leave the workforce altogether.
14. People would be surprised to know: I am a classically trained singer who was once on her way to an operatic career. Sadly, I no longer sing. I also wanted to attend medical school, but my illness forced me to choose another career path.
15. The hardest thing to accept about my new reality has been: all of my physical limitations.
16. Something I never thought I could do with my illness that I did was: become an advocate and meet with members of the US Congress on Capitol Hill.
17. The commercials about my illness: do not exist.
18. Some things I really miss doing since I was diagnosed are: international travel, martial arts, hanging out with friends.
19. It was really hard to have to give up: physical activity.
20. A new hobby I have taken up since my diagnosis is: advocacy for people with CFS.
21. If I could have one day of feeling normal again I would: cook, clean, and go grocery shopping so that my husband wouldn't have to.
22. My illness has taught me: patience.
23. Want to know a secret? One thing people say (especially when they know I am sick) that gets under my skin is: "You look good!" Of course, I look good on the outside. I have an INVISIBLE illness. I feel terrible on the inside.
24. But I love it when people: genuinely want to learn more about my illness.
25. My favorite motto, scripture, quote that gets me through tough times is: "Everything happens for a reason." (Also, "What doesn't kill you makes you stronger.")
26. When someone is diagnosed I’d like to tell them: there is a vast online community of others with this disease who understand what you are going through. There is no need to feel alone.
27. Something that has surprised me about living with an illness is: the amount of support that is out there, as well as the amount of disbelief that is out there.
28. The nicest thing someone did for me when I wasn't feeling well was: make me homemade chicken soup and bring it to me in bed (my husband Kenny has done this on more than one occasion).
29. I’m involved with Invisible Illness Week because: I am passionate about CFS education and advocacy.
30. The fact that you read this list makes me feel: wonderful.
Find out more about National Invisible Chronic Illness Awareness Week at http://invisibleillnessweek.com/.
Today's Activities: home (hooray for Labor Day). Today's Most Annoying Symptoms: headache, dull pain in lymph nodes in neck, muscle fatigue, sinus pressure.
Mood (10 is best): 6
Energy (10 is best): 5 (hooray for long weekends!)
Physical Discomfort (10 is worst): 4
Subscribe to:
Posts (Atom)