29 Things About My Invisible Illness You May Not Know
29 Things About My Invisible Illness You May Not Know
National Invisible Chronic Illness Awareness Week is held annually in September and is a worldwide effort to bring together people who live with an invisible chronic illness and those who love them. We may say, "no one understands!" but have we really given them the chance to?
The illness I live with is:
I refer to all my problems collectively as 'dysautonomia'. I am living with: Acute Postural Autonomic Nervous System Dysfunction, Adrenal Disorder, Cerebellar Ataxia, Gastroparesis, Hyperkinetic Circulation, Hypothyroid, Hypovolemia, IBS, Mesangial Proliferative Glomerulonephritis, Migraines, Orthostatic Hypotension, Peripheral Neuropathy, Postural Orthostatic Tachycardia Syndrome (POTS), Small Fiber Neuropathy and Supraventricular Tachycardia (SVT).
I've had symptoms since …. and was diagnosed with …. :
I have had uncontrolled tachycardia since 1985. I was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), a form of dysautonomia, in 2004 and the rest followed over the years little by little. Between 1985 and 2004 I was given countless drugs to stop the tachycardia and none of them worked; should have been the first clue to one of the doctors I had POTS but they all missed it. After the failed Radio Frequency Ablation in 1994, which 5 doctors now agree I never should have had, my body was screaming to look at something other than my heart for the heart problem. But the doctor told me it was impossible the Radio Frequency Ablation did not work because he had cured me…OPPPSS…still had tachycardia so he gave me another drug to try.
The biggest adjustment I've had to make is:
My dependency on my husband because he has taken over most of the household chores, all the shopping and running errands that were in the past my responsibility.
Most people assume:
I have no idea what people assume about me.
The hardest part about mornings are:
I wake up each morning with a headache which is then followed by a stomachache. This is followed by uncertainty about what I will and will not be able to do when I get out of bed or if I will be spending the day in bed.
My favorite medical TV show is:
I do not watch any medical shows, unless Dexter counts as one, because I am a living breathing Medical Show plus am creating a medical based web site about dysautonomia.
A gadget I couldn't live without is:
My Tempur-Pedic adjustable bed
The hardest part about nights are:
I hate ending my day and going to sleep because I have accomplished so little during the day. If I could stay awake and alert with energy, that is the tricky part, maybe I could get something done around my home and ease the burden placed on my husband.
Each day I take 6 pills and liquid vitamins.
(No comments please)
Regarding alternative treatments I:
I have tried most standard medical treatments with less than minimal or even horrible results. All medication to treat dysautonomia is prescribed 'off-label' because there is no FDA approved drugs to treat it. Since traditional medicine has little to offer me and I will try any reasonable alternative medical advice or treatment. Mangosteen Juice worked where fiber of many different kinds failed in helping to relieve the constipation caused by dysautonomia and IBS.
If I had to choose between an invisible illness or visible I would choose:
I do not care about disease visibility but I would rather have a disease that is easily diagnosable and commonly known by doctors and the general population.
Regarding working and career:
Working from my home as a web site designer has now become impossible because of the extreme fatigue and brain fog. My Army career was cut short many, many years ago due to my health.
People would be surprised to know:
I have a maximum 2 to 3 hours of energy a day. The other 21 to 22 hours in the day are spent in my lounger or bed.
The hardest thing to accept about my new reality has been:
The complete lack of freedom about what I might do during any given day. My body decides for me what I may and may not do.
Something I never thought I could do with my illness that I did was:
With the help of friends I was able to participate, in my own little way, in the 'DC 9-12 March' and then the 'Kill The Bill Rally' in 2010.
The commercials about my illness:
What commercials? A rare disorder with no drug to treat it does not have commercials because there would be no profit for a drug company.
Something I really miss doing since I was diagnosed is:
The freedom to order anything I want from a restaurant menu. The gastroparesis has progressed to the stage that my diet is extremely limited and I do best on a mostly liquid or puree diet. Forget about ice cream because the high fat content is too difficult for me to digest and makes me sick.
It was really hard to have to give up:
Until recently I enjoyed taking online classes to further my education but due to brain fog, extreme fatigue and anxiety I have stopped taking them.
A new hobby I have taken up since my diagnosis is:
I had a lot of hobbies I did before I got sick and I no longer have the extra energy to do most of them. I have not replaced my old hobbies with new ones.
If I could have one day of feeling normal again I would:
I would jump on a plane and fly to Bali and may never return home again.
My illness has taught me:
To appreciate my husband and the life we have had together.
Want to know a secret? One thing people say that gets under my skin is:
"I don't think you are as sick as you think you are." Remarks like this hurt when someone other than a family member tells me this but when it comes from a parent or siblings it is devastating.
But I love it when people:
When I am out the doors I have to open to enter a building are often heavy and difficult for me to open. I love it when someone opens the door and then holds the door open for me to walk through. I enjoy it even better when they do it out of common courtesy and not pity.
My favorite motto, scripture, quote that gets me through tough times is:
'No test or temptation that comes your way is beyond the course of what others have had to face. All you need to remember is that God will never let you down; he’ll never let you be pushed past your limit; he'll always be there to help you come through it.' (1 Corinthians 10:13)
When someone is diagnosed I'd like to tell them:
Don't believe the first doctor and find a specialist to confirm the diagnosis. Then extensively educate yourself because you will often find you know more about your disease than most doctors. If you have a rare disease you must become your own advocate.
Something that has surprised me about living with an illness is:
Very few people in the community I live in wonder why I have stopped walking with my dog a couple of hours a day. A woman who pushes a dog in a Big Blue Dog Buggy because her dog has health problems is not exactly a common sight and believe me I did not go unnoticed but I also have not been missed.
The nicest thing someone did for me when I wasn't feeling well was:
I was too ill to take MacLeod, our dog, outside and a friend came over and took MacLeod to her home for the entire day. A few months later I hired a woman to walk MacLeod while my husband is at work.
I'm involved with Invisible Illness Week because:
Raise awareness of dysautonomia.
The fact that you read this list makes me feel:
I am always surprised that anyone actually reads what I write.
Quote by Christopher Robin to Pooh
Promise me you’ll always remember: You’re braver than you believe, and stronger than you seem, and smarter than you think.
Today I Am Grateful For…In a few days my husband and I will celebrate our 37th anniversary. I love him more each day, he still surprises me with his vast knowledge of things I have never even thought about and he makes me laugh at least once each day.
Self Portrait
September 2010
