Same 4 walls

[docmel]

Biggest problem for me no matter how you slice it as you go from room to room it’s the same 4 walls. Sometimes I feel so “boxed” in. Traveling with the oxygen requirements I now have is nearly impossible need to figure out if I’m going to become a back seat rider verses a copilot position next to whom ever my driver is. Here at home with my son here to help me my oxygen concentrator when I move about he will turn it up. I am now at 10 liters of oxygen per minute when ambulating (my walking test 600 ft in total by the end of the first 100 feet I was at 10lpm oxygen with saturation at 88%) . Really anytime I’m exerting myself. That includes arguing. Then at rest 2 to 4 lpm as I am now on continuous oxygen 24/7. I knew this day would come and truthfully I am beating the odds as they say by now I should be pushing up daisies. I know we aren’t time stamped but it is getting increasingly difficult to maintain a positive attitude. Watching my family watch me at times struggle to catch my breath or breathe after having exerted myself to the extent of oxygen starvation where I’m panicked and gasping for air. These observations are an after the incidents thoughts. In that moment I truly feel as I might just die. I was a nurse and I actually took care of someone who had exactly what I do. It’s like that was some preparation for now. How do I prepare my husband or my children? I’ve seen many things as a nurse but they have not. I do not want to die and I guess truthfully no one really does. I am stuck within these 4 walls except on days I have a doctors visit or go to sit outside as far as my tubing will take me. I have books to transport me to another place or time, television for my daily dose of drama and laughter, my fur babies for constant continuous love, the little things I do still for my husband like braiding his hair, and just being here with all of them wanting every second of every day to be an eternity instead of a second in time.

[stone-UK]

Hi

Have you considered a mobility scooter, it will get you out and about shopping. You oxygen requirements will be similar to being at rest, two cylinders in a approved carrier attached to scooter. Will allow you that extra freedom.

[docmel in reply to stone-UK]

Yes but cost becomes a consideration here in the US insurance may cover some but not all the cost and often times I fall into a gap where we (my hubby and I) make just a little to much to get help with the rest of the cost. Perhaps an excellent option if I can find the funds for what insurance won’t pay....🤔🤔🤔🤔🙌🏼🙌🏼🙌🏼

[peege in reply to docmel]

2nd hand? Worth a look. Over here in UK there are often 'hardly used' ones for sale. It must be similar where you live docmel x

[sassy59]

Sending you hugs and Stone has a good idea. Worth thinking about anyway. Xxxx

[Ruach]

I adapted from what I used to be able to do to what I probably could do.

I think the realisation about limitations dawns when you can no longer do what you used to and just stop...and end up watching TV.

I took up photography, watercolour painting and micro-electronics....things I had never done before, but took up little room, can be minimal cost and really good for distracting one from lingering on what is no longer in reach or ability.

May not be for all, but worth a thought perhaps.

And as Stone says, getting out on a scooter is a great way of breaking monotony, plus getting fresh air and meeting folk. I will be out on mine more now that the weather is warming, with the camera kit in the basket!

[newlands]

I really feel For you having lived in the states without insurance I know the cost of health care and it so difficult for you to get out ,I am in the same position but a lot older than you so it doesn’t get me down like it does you having a young family etc

Take care

Dorothy xx