Officially Disabled And Running Out Of Steam....
April 12, 2010
I'm now 42 going on 80. I didn't think much of it when I fell asleep all the time in High School, but I did start to look into it after a couple of years of trying to get through college by sleeping through class and sleeping on my homework. At the advice of doctors I dabbled a little with prescription stimulants in the early 90's, and was on them continuously from about 1994 until this past december. I was diagnosed with Idiopathic Hypersomnolence (tired all the time and we don't know why) by Mayo Clinic in 1996, but have continued to beat the subject to death until a couple months ago when another highly regarded sleep specialist ran out things to try and went back to the IH diagnosis. When I started seeing my psychiatrist to manage my meds a couple years ago he was not comfortable with the fact that I was taking 45mg of stimulants a day. When I quit the stimulants as part of 2 weeks of preparation for my last sleep study I was taking 90mg of adderal a day with minimal effect.
I had been working as a carpenter for the past 13 years because I couldn't sit down at a job and use my education without falling asleep, and this past august my very patient employer ran out of patience and laid me off when my lack of productivity could no longer be ignored. After my wife and family started pushing me to look into Social Security Disability I started talking to people about it and most people figured it would be a tough one, a hard sell, to expect to get rejected, (like EVERYONE does) to need a lawyer, and take at least a year to get through. Well, I must be a basket case because I sent my paperwork in myself, my file sat on a desk for 2 months while the person handling it went on maternity leave, then when she was done with it it was randomly selected for quality review which took another month, and I got my first check almost 6 months to the day after my application.
I remarried 9 years ago, and we proceeded to pop out 4 beautiful girls on top of my wife's (now 15) son who lives with us and my son (now 16) who lives with his mom in IL, and I don't know what is the bigger problem for me - my IH problem or the fact that my wife thinks she understands it when she obviously doesn't have a clue. Our marriage has never been the best, but it has declined rapidly over the past couple of years due to my inability to perform as a husband and father and the only reason she is still here is because she can't afford to buy a house for her and the kids and I refuse to leave my kids. Right now my kids are the only thing keeping me alive, but if my wife does move out my time with my kids will be limited because she doesn't trust me to take care of the kids by myself because of the tiredness. My stepson shares my wife's viewpoint, and since him and my son communicate daily my son, who has always been understanding and mature way beyond his years, will no longer answer or return my calls.
I am a die-hard optimist and I have always been one of the most highly motivated members of a family that consists of the hardest working people you could ever meet, but I don't know how to keep going anymore. I'm so tired of hearing "yeah I'm tired alot too" from people who consider being tired to just be a lack of energy when my world consists of relentless misery.
When it comes to a problem like this, understanding lies in a tiny little space between pity and disgust that is too small for almost anyone to see in.
April 21, 2010
I've been using standard prescription stimulants starting with Ritalin, most of the time on various forms of dextroamphetamine, and the past 3 years on Adderall which is a combination of the 4 forms of dextroamphetamine. To some extent these are like loading up on caffiene, but they do help and don't have much for side effects as long as you don't take too much.
I had been off of them for 4 months and really didn't want to go back on them because I figured my body would just get used to them again, but a few days ago I called both my sleep specialist and my psychiatrist about going into inpatient care for my depression (caused by the tiredness) and hoping for some coping skills for feeling like crap every second of every day, dealing with the fact that I will probably be losing my kids because of it, etc. Both of them told me I needed to go back on Adderall just to keep going, so I did. My head is still foggy and feels like crap, and I still don't think I'd be able to maintain a full time job, but at least I have enough energy to get some stuff done around the house, making me feel a lot better about life. I haven't made a dent yet as far as making my wife want to stay, but who knows. I also expect to be starting a part time job in a week or two that will have a flexible schedule so I can work around my tired cycles.
One more note. One night about 3 years ago I was working late and at about 7:10 p.m. I stopped. Holy s***! I was wide awake! My head was completely clear! I put my stuff down and just walked around experiencing the feeling of viewing the world with a clear head and assuming it wasn't going to last forever. Wondering...." wow.... is this how some people feel all the time?" "This is AMAZING!" The only way I could compare it to my normal existence was wondering I would feel like that if I took some real illegal drugs. Then it was over. Back to reality. That was the only time in my life that my head as been clear and I don't think it's going to happen again.