30 Things About My Invisible Illness You May Not Know

I suffer from more than one chronic invisible illness - and more than two - but I will focus here on just two: Chronic Intractable Migraines and Hypothyroidism


I'm torn because I also suffer from NCS - vasovagal syncope, a form of Dysautonomia, that also greatly affects my life, but I will leave that to my post on my most embarrassing public fainting episodes, see earlier post on this subject.



Support National Invisible Chronic Illness Week - September 13 - 20


30 Things About My Invisible Illness You May Not Know - Chronic Intractable Migraine
1. The illness I live with is: Chronic Intractable Migraines - constant
2. I was diagnosed with it in the year: migraines technically diagnosed 10 years ago, Chronic Intractable Migraine about a year and a half ago
3. But I had symptoms since: I was in my early teens
4. The biggest adjustment I’ve had to make is: adjusting work environment - I now work from home, lighting, learning to say no and learn and live with my limits - I may have to say no at the last minute.
5. Most people assume: I have a headache or wearing sunglasses because I overdid it
6. The hardest part about mornings are: Waking up and realizing the pain is still there
7. My favorite medical TV show is: House
8. A gadget I couldn’t live without is: My computer
9. The hardest part about nights are: Trying to fall asleep when the pain wants me keep me awake and then taking meds and falling asleep too soon and missing time with my husband.  Not getting a good nights rest even when I sleep.
10. Each day I take 23 pills & vitamins. (No comments, please) - plus monthly B12 shots and 2X a week Toradol shots
11. Regarding alternative treatments I: have tried almost everything, acupuncture, migraine massage therapy, homeopathy, physical therapy (multiple), chiropractors (multiple), essential oils and herbs, diet restriction, toxic cleansing, other strange things people suggest to me, sleep doctor and sleep study, therapy
12. If I had to choose between an invisible illness or visible I would choose: invisible so I can act fine and not be asked too many questions if I want to remain unnoticed - although then there is less awareness and more misinformation that floats around
13. Regarding working and career: I have had to cut back my hours, change my environment to suit my illness and abilities - things I can do - work has been supportive with me - I'm a CPA and now do mostly technical research and consulting and international tax planning without the daily grind of deadlines.  I have kept some of my deadline clients that are less stressful and mean a lot to me and international clients.
14. People would be surprised to know: That I am in pain 24 hours a day 7 days a week - I don't get a migraine every day - the pain never stops.  But, I am able to hide it and excel when I need to for work or family and then crawl back in my cave and huddle up and cry afterwards.
15. The hardest thing to accept about my new reality has been: That I can't do everything I had planned to do and that I can't plan to do things without knowing I may have to back out.
16. Something I never thought I could do with my illness that I did was: Transform my job duties - career - into something I enjoy so much more than what I was doing before - technical research and international consulting and helping others by being a consultant to the consultants.
17. The commercials about my illness: Are Grossly inadequate and make it seem Way to easy to just take a pill and get over it - hence others think I should be able to do that.  Way underestimate the debilitating nature of my illness.
18. Something I really miss doing since I was diagnosed is: Going out with friends anytime at the drop of a hat and dancing long into the night!
19. It was really hard to have to give up: My desire to be everything to all people at work and home and mourn the loss and learn to live with my limitations.
20. A new hobby I have taken up since my diagnosis is: Blogging - which has been such a great release for me!
21. If I could have one day of feeling normal again I would: First, beg for more time, then spend the entire day doing things with my husband outside, zoo, museums, parks, shopping, then going out and having a meal and a few drinks and spend time - quality time - together! - If I had more time, we would do these things in London instead of here in KC.
22. My illness has taught me: That I am more than just my illness, and to live life to it's fullest and not waste time feeling down (although I succumb at times but for a short time) about it - look to what I can do and how I can still be a great benefit to my family, job and society.  And that insurance is something everyone should have access to and going into debt for illness sucks!
23. Want to know a secret? One thing people say that gets under my skin is: When people say I saw this commercial or ad that says if you try this product it will cure you - have you tried that?  Or anything where someone talks about a "cure" because it isn't there.
24. But I love it when people: Tell me they are thinking about me, praying for me or just listen to me and ask if I need anything.
25. My favorite motto, scripture, quote that gets me through tough times is: from my Grandma (although she got it elsewhere) THIS TOO SHALL PASS
26. When someone is diagnosed I’d like to tell them: Find a doctor or better yet group of doctors who will continue to work with you and never give up on you - find support and don't believe it when people say it's just stress and you could get over it if you tried harder.
27. Something that has surprised me about living with an illness is: There are so many stories just like mine - I'm not alone!  And I have great doctors who won't give up on me.
28. The nicest thing someone did for me when I wasn’t feeling well was: My husband cooks me dinner and calls me to remind me to eat.
29. I’m involved with Invisible Illness Week because: We need more awareness and to get more information for myself and how to deal with my life like this.
30. The fact that you read this list makes me feel: Happy and relieved because you know how I feel.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com

30 Things About My Invisible Illness You May Not Know - Hypothyroidism
1. The illness I live with is: Hypothyroidism
2. I was diagnosed with it in the year: I was 23 - so 1994
3. But I had symptoms since: I was a teenager - I was misdiagnosed as depressed for many years because I was thin and didn't fit the profile - took being put into a psych ward where the test was routine and came out so drastic they moved me to another ward to take care of me and it was a teaching hospital so many students came by to look at me - normal TSH level is 1-5 - mine was 450, they said they didn't know how I wasn't in a coma.
4. The biggest adjustment I’ve had to make is: taking a pill everyday, having routine blood screenings and watching out for symptoms that my thyroid has gone haywire again.  And that effect on my other illnesses and effectiveness of medications.  And my hair thinning and shedding and whispies that look like bangs - like a receding hair line.
5. Most people assume: I'm not hypothyroid because I'm thin.
6. The hardest part about mornings are: Being overly tired and hard to wake up
7. My favorite medical TV show is: House
8. A gadget I couldn’t live without is: Computer
9. The hardest part about nights are: falling asleep when I don't mean to and being cold all the time
10. Each day I take 2 pills & vitamins. (No comments, please) for this illness - see above for items taken for Chronic Intractable Migraines - this is just synthroid and Dulse Liquid
11. Regarding alternative treatments I: have gone to different endocronologists and found many to be arrogant and rude - my GP takes care of my thyroid and has done research and stays up to date to help me and he is very kind.
12. If I had to choose between an invisible illness or visible I would choose: Again, see above, invisible b/c you can hide it when suits your needs for career purposes or family needs
13. Regarding working and career: See above
14. People would be surprised to know: How drastic my hypothyroidism is - most people are diagnosed with TSH levels of around 20 but mine when in trouble never stays that low is from 150 to 280 - except my first diagnosis which was 450.  I could die if I wasn't treated.
15. The hardest thing to accept about my new reality has been: dealing with ups and downs of my thyroid and how it affects my other illnesses and medications.
16. Something I never thought I could do with my illness that I did was: Have the career I do
17. The commercials about my illness: are nonexistent
18. Something I really miss doing since I was diagnosed is: I don't know before I was diagnosed, I was really sick and depressed, so I'm happier now.
19. It was really hard to have to give up: Nothing
20. A new hobby I have taken up since my diagnosis is: Nothing other than above
21. If I could have one day of feeling normal again I would: See above
22. My illness has taught me: Our bodies are very fragile and a good doctor is an incredible key to life and happiness - one who understands and listens and is patient.
23. Want to know a secret? One thing people say that gets under my skin is: Why is your hair so thin and Do you have bangs? Most notably - Hair Dressers!  No, I have thin hair b/c I can't help it and it all falls out and those are whispies, not bangs.
24. But I love it when people: Compliment me on my hair even though I know it looks bad
25. My favorite motto, scripture, quote that gets me through tough times is: Again, same as above, This Too Shall Pass
26. When someone is diagnosed I’d like to tell them: Research your illness from many sources don't just rely on one or just your doctor, be a part of the discussion on your illness
27. Something that has surprised me about living with an illness is: See above - finding out you aren't alone.
28. The nicest thing someone did for me when I wasn’t feeling well was: See above - just a hug is nice sometimes.
29. I’m involved with Invisible Illness Week because:  See above, spread awareness
30. The fact that you read this list makes me feel: Happy and relieved you know more about me.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com

I miss my life

I remember dancing, parties, staying up late.  I remember having a life. 
I remember a career where there were no barriers to what I could accomplish.
I remember being outside for hours and hours enjoying the day.
I remember concerts and loud bars.

But, my illnesses have always gotten in the way -
I remember migraines on my honeymoon.
I remember sleeping all the time and not being able to stay awake to play enough with my kids when they were little.
I remember fainting at concerts, plays, out with friends.

I miss being able to spend quality time with my husband.  We still do but my illnesses get in the way and he worries about how I am or if he is pushing me to far.
I miss traveling - mostly reduced now because of medical bills putting me in debt rather than the illnesses themselves.
I miss having conversations with my friends about love, life, and the world where it doesn't come around to them wanting me to update them on my latest progress or unprogress with my migraines.
I miss having something to say that didn't end up being related to one of my illnesses.

But, I am grateful -
I am grateful for my body forcing me to slow down and start putting myself first.
I am grateful for my doctors who won't give up on me no matter what.
I am grateful, immensely, for my husband who takes such excellent care of me and loves me so much.
I am grateful for my acupuncturist and migraine massage therapist that give me a few hours of relief.
I am grateful that my family is so caring and understanding.
I am grateful that my children, now almost grown, are such incredible and caring people.
I am grateful that my work allows me to work from home and continue my career.
I am grateful for all the friends I have made that have conditions of their own that help me not feel alone.
I am grateful that my friends care enough to ask how I am doing and that they never judge me.

My life has changed, but wouldn't it have anyway as I grew older.  Less parties, concerts, etc are bound to happen.  Changing relationships with your children are bound to happen.  Everyone makes mistakes and wishes something was different about their past or about their lives. 

I have been able to do more of the work that I have wanted to do because of my illness changing my career path and gave me the gumption to ask for the job description I have now - with less stress and more research and consulting - more international tax consulting and less day to day the same returns.  I love constant learning and becoming better and now a lot of the other monotonous work is out of the way - thanks to my illness and thanks to my doctors who insisted this was the only way I could work - that or disability.

I cherish times when I feel better and am able to do more, go shopping, hang out with friends, etc.

I go through ups and downs where I feel my life is over to where I am grateful for what I have and see benefits to my problems.  But, doesn't everyone have their ups and downs?

Three things I want to focus on changing to make my life better -
1) Getting my friends to think of me as more than my migraine and talk to me openly about their problems and talk like we used to.  Solution?  I've tried to tell them, but they care and want to know and it takes so long to update them, it turns into our entire time.  I've tried to not update them and they are hurt by that.  Maybe a good solution is a weekly email to all saying this is where I stand right now with my condition, now, you have the info, so when we talk, let's talk about other things.  Sounds like a good idea, I'll put it in motion.  I still will complain on twitter to my #spoonies to get support there but will also try to be positive and upbeat until I hit a major downspell and even then my friends will get to listen to me complain.
2) Spending more quality time with my husband.  Make more of an effort.  I have let things slip in our marriage that it's more about taking care of me then a two way street.  Now, I am the breadwinner, so I do my share bringing in the $ and that is taking care of him in a way.  He's an artist and I'm a CPA so he brings in wonderful things and interesting things and I bring in $.  I need to be there for him in other ways.  Don't get me wrong I try very hard right now but I can't get him to open up a lot of the time because he worries that we should be focusing on my pain and not his needs - that he'll be fine and doesn't need to talk, etc.  Enough of that - I have to be more forceful and despite my pain make efforts to do things with him even if it increases my pain for a time.  He has opened up that he sees I can pretend, very well, to clients, work colleagues and friends that my pain is not as bad as it is, but with him I open up.  Part of that is that he is my comfort.  But, and I don't want to lie, I need to give some of that to him.  I'm in pain but we are spending time doing some of the things you want to do and ignoring the pain for a little while.  I need to do this daily.  I love him and he deserves a wife.
3) Learn to say  no and get in control over the stress factors in my life.  I seem to like the part of work where things have to get done and done now and it's really important and all that stress.  But, I don't like the increase in symptoms or the let down from stress migraines - I have to have control first.  I can work on challenging projects and have reduced stress if I take control rather than letting the work take control.  I can't take on the stress of my colleagues and let my guilt and wanting to help them and ease them get in the way of my health.  I have to put me first.  I need to set boundaries and protect them better than I have.  I have to feel accomplishment for what I do and be proud of that rather than searching to please everyone more.  I do a great job and that's good, great enough.  I don't have to be perfect or solve everyone's problems.  Every morning I will say to myself "I am in charge of my schedule and I won't take on the stress of my colleagues.  I will accept the projects that fit in my schedule reduced as it is by my illness and will not feel like a failure or like I am letting people down.  That will only in the end let myself down.  I will put myself first - and remember the job I do is not life or death." 

I will continually have to come back to my thoughts and re-commit to my plan over and over.  I have to accept I will backslide and cannot blame myself for that.  I am ill.  I will cherish and pat myself on the back for the accomplishments I do make.

I will continue to grieve my old life in some ways and sometimes but I will not let that grieving continue to take a front seat.  I will focus on what my life is and will be and the joys and wonders that are to come.

Here's to all of you out there dealing with your own illnesses and problems.  We are stronger than we think we are.

Much love,

Elizabeth