juliegee Posted January 26, 2011 Report Share Posted January 26, 2011 Has anyone seen this documentary "I Remember Me"? Just the title brings tears to my eyes... It's an award winning documentary about living with CFS. It was made by a young woman, who was stricken while working as an assistant producer with Jodie Foster on a film. It's won a bunch of awards and has made a believer of all who've seen it. As most of you know, the vast majority 90+% of CFS (or CFIDS) patients have an autonomic dysfunction (POTS or NMH.) The overlap between the conditions is uncanny. My poor son is graduating this year and has recently been grumbling that no one understanding how he feels. He can barely get through the school day, much less participate in sports or extracurricular activities. Once he gets home, he just sleeps and sleeps. This Saturday is Senior Night at the school. I guess the students had to fill out a form, with all of their school-related achievements, and Mack had none He's informed me that he doesn't want to attend. Each of the Seniors is honored, while a list of their achievements is being read off, in between the varsity girls and boys basketball games. My heart is broken. Few students even know he's sick. The teachers and administrators apparently do, but could care less. If I bring it up, they wave their arms and say "Yeah, I know all about that, honey." REALLY? I am hopeful that the documentary will be appropriate so that it can be shown in some capacity at the school. I've ordered it and can't wait to see it. If nothing else, it will be so validating to my son. Living with such an awful chronic illness is debilitating and demoralizing. It hurts to see my son hurt. In my eyes, he is a hero for even attending school, much less graduating with decent (A's & B's) grades. I am so proud of him Julie Quote Link to comment Share on other sites More sharing options...
roxie Posted January 26, 2011 Report Share Posted January 26, 2011 The spring I was supposed to graduate was one if the safeness for me, just thinking about it is making me teary.I ended up having to be homeschooled & not graduating on time. I felt soooo left out. I still do as everyones life moves on. & he's probably going to have the same struggles.Now, pol my age are getting real jobs & getting married. It honestly doesn't get any easy. Being 25 & still living at home sometimes makes me feel like I have an "L" tattood to my forehead & I comes across as a bum. My mom tells me it's not like that BUT it sure feels like it & I really don't know how to feel about it or tell ppl when asked "what do you do?"Enough about me, I hope documentary goes well & your son knows he's not alone.? Quote Link to comment Share on other sites More sharing options...
Machair Posted January 26, 2011 Report Share Posted January 26, 2011 I have CFS/ME and NMH and POTS so yes I am one of the 90% who have dysautonomia. The documentary is brilliant and I think you will find it very comforting. Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted January 26, 2011 Report Share Posted January 26, 2011 If you haven't seen it just go to youtube and search on the name. I hope it gives Mack a Boost. Quote Link to comment Share on other sites More sharing options...
juliegee Posted January 27, 2011 Author Report Share Posted January 27, 2011 Thank you everyone for the support & kind words- on the forum and off. Your compassion helps. It hurts to see my son give up and emotionally "drop-out." When I saw this documentary, the title took my breath away. I DO remember him so full of life and energy. My most fervent prayer is that he (and all of us!) will regain that again. Bananas- Do NOT get down on yourself. You, my dear, are another hero living amidst us all. It takes so much energy to be a young person and attain all of the education, and qualifications you need to earn a decent living. To do it, with a chronic invisible illness, is HUGE. I recognize your efforts and applaud you. Keep us the great work!!! Sweep your hair to the side and let your "H" shine Julie Quote Link to comment Share on other sites More sharing options...
roxie Posted January 27, 2011 Report Share Posted January 27, 2011 * I misspelled in my earlier post. What was supposed to be my senior year was one of the SADEST*Todd- do you have a link to the youths video? I can't find itThanks Julie, it's a real challenge. I always say & maybe it'll help Mack? If we give up then we don't have anything. Even if it's baby steps at least we're moving forward. Honestly, I know of some people who were healthy & didn't have a list of accomplishments when they graduated. I think just going to school & graduating with this illness is a super accomplishment. Quote Link to comment Share on other sites More sharing options...
babettess Posted January 27, 2011 Report Share Posted January 27, 2011 Julie,My 19 year old just talked to me tonight about how her life is so different than she wants it to be. She said, "I'm young. I should be happy and having fun at this time in my life." Actually all she can do is make it to college and then recover by sleeping. It is so hard to watch our children struggle to just make it through the day when their peers are able to do so much more. I reminded my daughter that her brain and personality are worth much more than what her body can do.Big hugs to you and Mac. Babette Quote Link to comment Share on other sites More sharing options...
roxie Posted January 27, 2011 Report Share Posted January 27, 2011 Babette- I go through the same feelings as your daughter it's very hard. It feels like my life is over because so many people say things like "oh to be 25 again" & all I think is my 25 stinks*, so it just feels like life has passed by. Even though some people say I have more life ahead of me.?What's hard is that we don't know if we'll get better & it really scares to me think that I may have to live my life the way it is today when my brain knows I could do so so so much more. I am not an incompetent person but because of POTS it sure appears/feels that way.It seems like I have to separate the two a lot. Like what happens because of have POTS & what happens because of who I am as a person. Ya know?! I have to tell myself I'm not working bc of POTS but me as a person without POTS would have the ability. There is a difference if that makes sense??I defeibtely feel like I'd be worth more if my body could do more, that is a lie, I know, but a very very hard lie to shake Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted January 28, 2011 Report Share Posted January 28, 2011 Youtube has it broken down to 9 sections, the graduation story should be on these two links: I wonder how he's doing today? Quote Link to comment Share on other sites More sharing options...
juliegee Posted January 28, 2011 Author Report Share Posted January 28, 2011 Oh Geez,I watched it today. What a tear jerker Overall, it is wonderful. Of course, I want more. They had some of the best CFS experts in the world on and NEVER let any of them throw out a theory. One researcher said the psyiological evidence for this disease is overwhelming, BUT she never listed it. THEN, the filmaker gave naysayers so much air time- "It's all psychological", "Mass hysteria", "It's mostly overweight middle-aged women." I wanted to slug him It was made almost 20 years ago. I want part II with evidence of all we have learned- namely the autonomic dysfunction connection. It was peripherally mentioned everywhere- BUT never directly I still highly recommend it & I'm more intrigued than ever with the clusters???Julie Quote Link to comment Share on other sites More sharing options...
Christy_D Posted January 28, 2011 Report Share Posted January 28, 2011 I just watched all 9 segments on Youtube. It made my cry! I am just hoping my son will be able to graduate some day. He is a sophomore and has only been to school for 7 weeks in the last 2 years. He had a 'remission' at the beginning of this school year, but it all came back and then some after 7 weeks. Cody doesn't leave the house much, unless it is to go to the doctor. He has one remaining friend who visits him every couple of weeks. Teenagers all get their licenses and move on with their lives while he is kind of like living "Ground Hogs Day". The same day over and over, wake up sick, stay in bed, watch TV, try to get a little schoolwork done, start over the next day.I'm thinking about taking him off all medication/supplements to see where it stands with no meds. If 20 to 30 pills a day isn't doing anything, what is the point. Then maybe start him back one at a time. Fludrocortisone definitely helps his dizziness, but I'm not sure if anything else is having any effects any more. They may just not be effective anymore, time to try something new. Christy Quote Link to comment Share on other sites More sharing options...
juliegee Posted January 28, 2011 Author Report Share Posted January 28, 2011 ((((((((((CRISTY))))))))))I think your plan isn't a bad idea. I agree, the florinef is the most important drug & shouldn't be stopped. The other one that comes to mind is an SSRI. If he's on one of those, they can't be stopped cold turkey. That one needs o be tapered down for fear of seizures, etc. Who is managing your son's medical care? Is he seeing a good ANS doc? Lastly, I am so sorry things are stuck. Tough movie to see, especially that graduation scene....Gentle Hugs to you & your sweet son-Julie Quote Link to comment Share on other sites More sharing options...
Christy_D Posted January 28, 2011 Report Share Posted January 28, 2011 We are currently seeing a specialist who is local and used to work with our Cleveland doctors. I haven't run it by him yet, about taking away the meds, but I'm going to. They started Cody on midodrine a couple of weeks ago and the doctor wanted to see if that helped before trying the IV DHE to see if stopping the migraine process would help. We also have a new gastroenterologist, since that dr. was also in Cleveland, but the appt isn't until Feb 10th. So maybe the new gastro will have something new to try for the nausea. Christy Quote Link to comment Share on other sites More sharing options...
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