Not many know my nightly nightmares with suction but I just wanted to share my experiences to see if anyone can relate or just write it down to get it out of my system.

So every night (barring ten odd days in a year) before bed I and my mother have 1 maybe 1 and a 1/2 hours of chest suctioning before we can even contemplate getting in an actual bed. I don't look forward to it ever because I'm ready for sleeping. So at approx. 1:30am i shut down the comp for bed then i go upstairs in my lift. Next I park my chair by a desk and we begin our slog.

My mum will put the first catheter down my mini tracheotomy and hit the suction. I dont really feel it going 'down' per se but I know it's there. Then its a mixture of relief and exhaustion as I weakly cough trying to get the mucus to move into the tube. Mum puts the same catheter up n down for a good few times, usually that takes 10-15 minutes. I'm shattered so we stop and mum 'taps' my back and i breathe as best i can with my head down. Then its the next catheter for 15 minutes. More exhausted coughing from me and also I hold my breath a little which i find acts much better than my cough. Then I stop for a rest, im tired by now and ready to give up and cry (i don't, but i dunno how) I drive my chair into the other part of my room and breathe n rest for 2 minutes, occasionally coughing and dribbling.

Then back i go for another 10-15mins on the third catheter, playing a rubbish game of guess when to stop suctioning, my chest doesn't say when its done unfortunately. Barely keeping our eyes open we fight on, mum moving the tube, me aching from the vacuum, coughing, holding breath and dribbling, my mind screaming for bed and the mucus to go away. I decide to stop and see if I need more, after a few breaths and coughs its still there, i can feel the rattle and get mightly annoyed.

Back again for catheter number 4 and I'm hoping, praying, willing and mentally shouting for the rattle to clear. Another 10-15 mins of weakly coughing and breath holds and feeling exhausted it finally ends. I can not take anymore and just say 'you know what dmd, stuff you' and mum gets me in bed at 3am.

You think I can sleep after that, no way, I'm fighing my brain to stop thinking because im awake n not rested after that ordeal. I dont get that chance to unwind and drift off. No wine, cuddles or snacks for me, just coughs and breath holds to look forward too. It's hell utter hell. In bed as my vent whirs away, my back hurts every so often so its move the bed time then. Using my possum environmental control I move it and try to settle. At last I might crack it and fall asleep shattered. It dont last long as my back hurts n the moving has to be done again.

Nearing wake up time my eyes are stinging with tiredness and it doesnt matter what time im in bed its always the same. I can feel that dreaded rattle coming back and I know when i get up theres another hour of suctioning and more periods of suctioning throughout the day when the need arises. All then to look forward to another period before bed as described above. Lately i've had a gut full of suction and dmd, i'm loathing this part of my routine. Would you wanna go out or be cheery after all that? By the grace of God I keep mostly positive but im tired, exhausted and ready for a break but theres no end in sight and it is depressing.

Well life goes on and i just 'do it' and try to carry on finding any mental escape.

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Comment by Ian Anthony Griffiths on May 13, 2010 at 3:18pm
Hey Steven, Glad I'm not the only one, its pretty rubbish needing suction before we can contemplate sleep. I now take Amitryptaline (sp?) for back pain, and its great side effects have included helping me sleep and lessening the severity of my secretions. Hope you are well! I'm always on my computer too.

Ian
Comment by Steven Swarztrauber on May 13, 2010 at 1:10pm
My name is Steven Swarztrauber. I'm 24 and have DMD. I am from New York. I think your blog is great. I feel what you are going through. sometimes It takes 2 hours to get ready for bed depending on how much suctioning I need. I go to bed very late just like you. I am always on the computer.
Comment by Ian Anthony Griffiths on March 19, 2010 at 7:30pm
No worries Ofelia
Comment by Ofelia Marin on March 19, 2010 at 6:53pm
Thank you so much for sharing Ian!
Comment by Ian Anthony Griffiths on March 19, 2010 at 10:07am
You're welcome Ladies. Yep my mum is fantastic :D Was the 5 catheters last night. xxxxxx
Comment by KellyR on March 19, 2010 at 4:58am
Thanks for sharing, Ian. I know you struggle at night, but I just had no idea it was to that degree. I appreciate you sharing such details. Your mum is truly an amazing woman, and you already know how I feel about yourself. xxxx
Comment by Claire Albertson on March 18, 2010 at 11:27pm
Boy and I thought my son's bedtime routine was rough! After reading your entry, I realize I have nothing to complain about. Thank you for writing these postings.

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