Starting on night oxygen

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nocode

New member
Dear all,
I've recently learned that I'm going to start on night oxygen. I am completely devastated about this, with ups and downs but more downs for the time being.
I am also in shock because I sleep so well, I have no headches and I feel rested, energetic and active during the day. So nothing could have prepared me for this.
Part of the reason why I'm so down is that I truly think this is going to have a high impact on my self-esteem. I'm about to move in with my boyfriend, so this couldn't have come at a worst time. I'm worried about the face marks, the noise the O2 tank makes in the room, and mostly the fact that oxygen tubing on my face will make me look pathetic. My self esteem is taking a big hit and I am embarrassed about the moments when I'll go to bed and wake up, next to my partner, with the tubing on my face. I can't get over that.
He loves me and he knows all about my CF and he's a very caring man who's stood by me through all this. He says this is only going to be just a minor hurdle and that the main thing is that he'll get to sleep next to me every night.
As nice as this is, I still feel terrible and less of a woman.
Has anyone gone through something similar, both in the role of the CF patient, or as the partner?
 
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MeasureInLove

Guest
Hi Vera!
I can definitely relate! I am 30 and have been in a relationship with my boyfriend for 6 months. Just telling him I had CF was stressful, then my health began to decline steadily. I've just been listed for transplant and for two months I have been wearing oxygen at night. I was nervous about all the things I have to do and how that would effect how my boyfriend saw me. I mean, there are a lot of things about CF that aren't always sexy (coughing and mucus for one). But he's been so supportive. With the oxygen machine they gave me quite a few feet of tubing, so I actually keep it in a neighboring room which cuts down on the noise. Because he was so supportive it really put my mind at ease. He is even sweet enough to place the tubes on my face during the night when I pull them off in my sleep.

Sounds like you have a very supportive man as well. I'm sure he will be happy to know it will help you feel good and have better days.

Feel free to message me if you have any questions!
 
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sweetninis

New member
If he has no objection on your having CF then what else could be a big deal? He is a great man and treat him like one because there are many cf carrier couples who left their patrners after having cf child(men mostly)so I think you r very lucky don't worry about the mask and oxygen its all right the man who didn't left you after knowing u have CF won't throw you out just because of oxygen and trivial things
Cheer up!
Have fun
 
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LittleLab4CF

Super Moderator
My doc prescribed O2 at night about five years ago. I so far have ignored it and as near as I can tell haven't suffered dementia. I do not recommen this solution at all. But even after 30+ years of marriage, there are some things I know she can't handle. What I am saying is your fear is far from irrational. I suggest you reel this one in easy. Possibly involving him in equipment selection and set up will help him take ownership in the experience. Guys like to study up on new technology, not all men, but most prefer to be informed to understand and be helpful. I have been sick our entire relationship. Pneumonia was so common, she would drop me at the local ER and go back home to bed or office, whatever. She isn't cold or detached, it is just old hat. Best of luck.
 
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mamerth

New member
I have been using oxygen for a short while. My hubby is not affected by it. He is actually glad that I am on it. We both know it is helping me. Hubby will turn on my concentrator for me and help me get the tubing situated so that we don't get tangled it in during the night. The tubing is kind of a "romantic" killer but we giggle about it when he tries to kiss me.

My son is the only one is has a rough time of it.
 
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PeteRose

Guest
I just started night time oxygen as well, and I agree with you on the hard part. I put more into that than Pete did. He just kept saying, it is helping you why would I not want that? Just wait until you are going to sleep before you put it on. Pete actually got mine set up in another room so I would not hear the concentrator and just brought the hose in the room (long story). All is well, don't let it scare you.
Rosie
 
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