Idiopathic Hypersomnia; Rare Disease Day 2013

February 26th, 2013 by Carrie, the Just Mildly Medicated gal

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
 

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23 Responses

  1. marilyn b says:

    Thanks so much for sharing this Shep and Carrie for sharing her blog-I love you and all you represent to so many of us whose lives wouldn’t be the same without knowing you!! Love the caricature of you too!!!

  2. Sandi Bohle says:

    Thanks so much for including my friend Shep as a guest blogger. He & I have chatted about our invisible illnesses. Plus he’s great comic relief. I have Late Stage Chronic Lyme Disease that has settled in my CNS, spine, & brain. Grateful every day that I can still get out of bed.

  3. MZA says:

    Shep and Carrie, thank you for caring enough to share. Having lived with people with chronic illness, it is hard to wrap our heads around something that is indeed invisible. I’m hopeful that others who read this will feel less isolated and also breathe in both of your wicked senses of humor! love to you both.

  4. Lloydy says:

    What a terrific article. Thank you for helping raise awareness about Idiopathic Hypersomnia and the terrible toll it can take on people and their families.

  5. Lauren says:

    Thanks for sharing Shep!

  6. Misfit4Lyfe says:

    Thanks for sharing this Shep.. I too am a sufferer of Idiopathic hypersomnia and I am sooo grateful for the support group on FB.. the more we can spread awareness.. the better!!!!

  7. Misfit4Lyfe says:

    I too share in the sentiments of not realizing how strong I really am.

  8. Andrea says:

    Commendable! Genuinely u really see and get the ‘little’ yet ”profound” messages life has given/dealt us, but then chooses to share the messages with the world to better the quality of peoples lives (very articulate and also humorous I might add). People’s lives: such as those of us who feel isolated d/t IH or others who may be somehow connected to someone-thank u again

  9. Christine says:

    Reading this was like looking in a mirror as I also have IH. Anything we can do to raise awareness to invisible disease is great. And the support we receive from each other in our Facebook group is sometimes just what it takes as that little extra push to get through yet another awful day. Shep, you did a really great job of portraying someone who truly struggles with this disease. Thank you!

  10. Anonymous says:

    Shep and Carrie, by the time I finished reading, I had a big goody grin on my face. Shep, you are a really funny guy and I loved how real and down to earth you were in your answers. I too have IH and sleep apnea and could relate to everything you were saying. I find that I don’t tell most people about IH because they just wouldn’t understand. I live with a lot of guilt….guilt when I am tired, guilt when I have to take a nap. I don’t want to be this tired person especially when my kids are around but I just can’t help it. Thanks for your ray of sunshine. Every story encourages us! Leslie

  11. in pursuit says:

    This is amazing!!I know I can’t understand how you feel but I feel like I have a much better understanding of what you go through. I can offer nothing than a listneing ear, a prayerful heart and empathy for a fellow person in pain.
    Vicky

  12. Anonymous says:

    I recently joined IH and have cryed and laughed at some of the posts. When I found Out I had IH in 2001 I would type it in the search box and nothing would come up NO INFORMANTION. Maybe a page saying it was a rare disease but nothing on the effects and how my life would change. I just took my medications and tryed to cope. No one understood, cared,tryed to help or listen to me. I thought it was something in my house cause all my friends loved to come to my house eat, watch TV and fall asleep on my couch. We would laugh about it till it became serious. I would go to their house but sleep the whole weekend. It has been 12 years now growing older now without my friends. I’m alot like you regarding people and prefer to stay home close to my bed. My friend, my enemy. I don’t share too much with others anymore it’s to hard to explain. I’m glad I found this group wish I had years ago. Puddycat

  13. This post is touching, I have sarcoidosis too and decided to write about it…
    We review a variety of Sarcoidosis Awareness Ribbon marked items in an effort to bring support to the “no cause no cure” disease…dedicated to bringing reviews and testimonials for some of the most popular Sarcoidosis Awareness gifts and items on the market to help you in deciding to support the Sarcoid community thru Purple Ribbon marked items. http://sarcoidosisawarenessribbon.blogspot.com/

  14. Thank you so much for sharing and helping to raise awareness and understanding. Maybe Dr Bombay should hook up with Madam Pomfrey (Harry Potter)…

  15. Judith Dean says:

    Hi Shep, Thanks for sharing. I have been sleeping 12-17 hours at a stretch for a few years, now treated for sleep apnea but the tiredness continues, brain fog +++ I so identify with your illness, not sure if it’s what I have or maybe need more CPAP pressure. Thanks for sharing.

  16. Brian Hopper says:

    Thank you for sharing. I don’t feel alone as much. I had tears when reading this.

  17. Sara DeSotel says:

    I was diagnosed with IH 2 years ago but it has gone downhill recently despite medications. I’m seeing a neurologist and psychiatrist but I think the meds from the neurologist are causing the problems I see the psychiatrist for! Close to losing my job over this. Applying for FMLA so I don’t get fired for being late, but my productivity sucks even when I do get there. What do I do?

  18. Stephanie Bell says:

    I have just recently been diagnosed with IH after struggle with the constant exhausted feeling that I have been living with over the years. I also have the kind that I sleep the normal 6 hours at night and hit the ground running so to speak until I get to lay down and start all over again. I just thought this was my normal and needed to catch up on my sleep on my day off.
    Well life has caught up with me this last year. I had been having problems staying awake no matter how much sleep, what time of day, what I was doing. .. I had been sent home from work due to nodding off and my eyes closing. FMLA, short term disability exhausted and I am now waiting to hear from London Term Disability and now no job to return to at this time
    Increase in dosage of morning prescription and I feel like I am in a fog ..?

  19. Christina Marie says:

    Thank you to both of you for this! I too suffer from IH and I find that knowing I am not alone does help. It is so hard to get someone to understand, that we are not just “tired” now and then, we are physically and mentally EXHAUSTED all day long, no matter how much sleep we get. And sleeping does not help us. We don’t wake up refreshed, we wake up still exhausted. Yet the exhaustion forces us to nap often, despite knowing it won’t help us. It is not something we have control over either – we can’t just get a good night’s sleep the day before an important event, because even if we do, we will still be exhausted. I have been unmedicated for 2 months now because my doctor switched practices and I have to wait for him to start at the new one before I can see him and get my meds again – October 1. I can’t wait to be able to function for at least part of the day again!

    • Christina Marie says:

      I just want to note, that I also feel guilty for the amount of sleep that I need. For going upstairs to sleep while the family watches tv. For not having any energy. You are not alone!

  20. Allison says:

    This has been so perfect to find someone and others who actually know what and how I feel, not just be a new experiment for a sleep dr. I have been recently diagnosed as having IH, but I also suffer from sleep apnea along with a few other invisible illnesses. This has been an eye opening blog for me. It actually makes me feel normal, like my diagnosis is not just a number. As such just as normal for feeling so exhausted, so frustrated, and desperate for closure to what is actually wrong with me. Why I still need to take naps throughout the day, though I had only been up for 2 hours, why I wake up as tired as I was going to bed, why I have to make up excuses as to why I can’t go to a movie or why I can’t do this or that before a nap, before I can do anything I have to plan my life around this invisible illness and diagnosis. No, you think being tired is the same? It is not even close, never feeling refreshed, always feeling that extreme fatigue as if I had went swimming for a few miles and as soon as I realize ‘I need more sleep..’ once my head hits that pillow, once my bones begin to relax and I feel sleep take me over, sometimes it really is the best for me to give in to it.
    No one seems to understand just HOW exhausted and with trouble I am conjuring these thoughs. How anxious I am as a person, but having no brain power to think my thoughts.
    Again, until next time.

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