Idiopathic Hypersomnia; Rare Disease Day 2013

Just Mildly Medicated is so happy to bring support to a friend as well as awareness to Idiopathic Hypersomnia and Rare Disease Day. This is from Shep, a hilarious Jersey guy who actually chooses to spend some his waking hours chatting it up with me. 

Take it away Shep...

1. The illness I live with is:   Idiopathic Hypersomnia  which is a chronic, incurable Central Nervous Disorder where in simple English, the sleep neurotransmitter malfunctions (think of it like a light switch stuck in the sleep position) and your body never gets a full amount of normal restorative sleep.  Many people with this disorder will sleep 14-20 hours a day and then be exhausted the few hours a day that they are awake.  I do not have this "long sleep" version of the disorder. I wake up easily at a normal time, but wake up exhausted, stay exhausted, nap in the afternoon which is not restorative so I wake up from my nap, still exhausted and spend the rest of the day and night exhausted....see the pattern?

At its worst, I cannot maintain my mental focus for more than a short period of time  so my ability to think, to work, to speak and have a meaningful conversation with someone is exhausting because I often I struggle to  find the words I want to use to express myself ....in many ways, I have become a hermit in my home and have become largely dependent on my wife to drive during the large chunks of the day and night, when I cannot safely be behind the wheel of a car both for my safety and yours.

2. I was diagnosed with it in the year:  2007 but it got significantly worse two years ago.

3. But I had symptoms since:  1988 after I had another illness called Sarcoidosis which knocked me on my rear end for almost a year. My health has never been the same since.

4. The biggest adjustment I have had to make is: despite desperately wanting to participate fully in life, I am often forced to be an observer rather than an active participant for more than a short period of time before my energy completely peeters out. All that said, I will try until my last day, to have fun, to laugh, to enjoy my wife, my kids and my friends, to travel, albeit at a slower pace and generally be grateful for all the blessings that I do have in life.

5. Most people assume: that they understand how I feel.  What they understand is being tired at the end of a busy day, what they don't understand about living with unremitting exhaustion  is waking up completely wiped out and going then going downhill from there. Being so drained that your bones hurt and all you want to do is curl up somewhere and cry. That forming sentences becomes your enemy because you can't reach through the brain fog to find the words you need to complete a sentence. Living your life primarily on your sofa and that most of your friendships are on Facebook because face to face extended human interaction is physically and mentally overwhelming and exhausting.

6. The hardest part about mornings: is that it takes me two or more hours after waking and taking my medications and drinking a lot of coffee, to finally have some semblance of mental clarity to work for three or four hours before my body gives out

7. My favorite medical TV show is:  N/A...  I don't have the patience or the sustained focus for network TV

8. A gadget I couldn't live without is:  my CPAP machine which keeps me breathing as I sleep. In second place would be anything that Apple manufactures

9. The hardest part about nights:  nights aren't bad, days are challenging

10. Each day I take:  a stimulant that is supposed to make me more alert, but is only slightly more effective then drinking Diet Coke. I also take a full complement of daily vitamins and mineral supplements,, sub-lingual B-12, weekly B-12 injections, weekly IV for a massive load of vitamins and minerals, and assorted potions and notions and active bacteria to build up my strength and my immune system which is less reliable than my soon to be replaced car....

11. Regarding alternative treatments:  I am strongly in favor them....Dr Bombay was my favorite guest character on Bewitched and I'm pretty sure he was an alternative practitioner 

12. If I had to choose between an invisible illness or visible I would choose:  Invisible....I can keep up the facade of normalcy to people who don't know since I look and I hope that I act normal...I am only now begin to let down my guard with others and be honest about my health and limitations without as much fear of being judged or ridiculed. I have enough self-esteem that if someone chooses to judge me based on their misguided judgments or lack of compassion, then I do not need them in my life.

13. Regarding working and career:  I have been forced to shrink my CPA practice because my energy level and maybe more importantly, my ability to focus for more than a short period is so compromised.

14. People would be surprised to know: how lousy I feel a lot of the time, even though they see a relatively happy person on the outside

15. The hardest thing to accept about my new reality has been: that my best days are behind me although I have learned that happy fulfilling days are still ahead of me, even if they are different days then I would have expected before this thing got bad.

16. Something I never thought I could do with my illness that I did was: to learn that I am a much stronger person then I ever thought possible, that I am a fighter and I'm not giving up on fighting this blasted disorder

17. The commercials about my illness:  N/A

18. Something I really miss doing since I was diagnosed is:  living every day like a normal person, driving longer than 10 minutes from home without fear of getting into an accident, going out to restaurants, theaters and movies and not having to back out of events because I'm so wiped out

19. It was really hard to have to give up: being a somewhat healthy person who could at least, pretend to still be a normal person

20. A new hobby I have taken up since my diagnosis is:  me....I've discovered something special deep inside and become a much better, emotionally stronger me as I have accepted the hand that I've been dealt and developed the mindset of  "f*** you, I'm not going to be defeated by this thing."

21. If I could have one day of feeling normal again I would:  just enjoy feeling like a young 54 year old, not an old 54 year old

22. My illness has taught me: what every six year old knows, that life is not fair so get over it and suck it up, buttercup!

23. It bothers me when people say:  if you're tired, take a nap but it bothers me more when people who should say something, say nothing...that's a horrible feeling

24. But I love it when people: listen without judgment and express concern and love even if they cannot fully grasp what I am going through

25. My favorite motto, scripture, quote that gets me through tough times is:  get out of bed and just live to the max, whatever the max is that day

26. When someone is diagnosed I’d like to tell them:  you have two choices, you can either "give in or give up" or you can fight with every fiber of your being to make sure that you live every day to the fullest that you are capable of doing

27. Something that has surprised me about living with an illness is:  I'm a lot stronger than I ever knew and that I do have people who love me and accept me for who I am now

28. The nicest thing someone did for me when I wasn't feeling well was: marry me, understand me and never judge me when I have to cancel plans at the last minute or tell me that it's okay, when I am so exhausted and that I can't think straight anymore.

29. I’m involved in bringing attention to Rare Disease Day because: many people, including several of my good friends also have invisible chronic illnesses and we all need more understanding, compassion and support...

30. The fact that you are reading this list makes me feel that maybe I can teach you something about people who may look fine, but are, in reality, struggling to get through each day.

Shep Greenberg