Good Days and Bad Days?

[Brittany Foster]

Hi Donna,
really great questions and I appreciate you taking the time to post this because I’m sure others really can relate (including myself). I know what it is like to do some more activity than usual or even just staying up a little later than usual and then suddenly it feels like symptoms are harder to manage. Unfortunately, our bodies are being worked pretty hard every single day. When we put more stress on it and try to live our lives the best we can and enjoy ourselves, we add even more stress to that. Your body telling you these things is a sign to slow down. I try to give myself permission to rest on days like that and I give my body what it needs on the bad days. I even was told that it is okay for me to turn up my oxygen a little just to help myself recover. When I have a “good day” I also try to pay attention to practicing balance and not overdoing it on the days I feel “good”. I get more work done around the house, head to the grocery store, go out with friends on the “good days” but also find some time during those days to REST too! Resting on the good days is just as important as the bad. I think finding that balance throughout every day puts us on the path to better managing this !

[Bunny Ferguson Benzing Sharp]

I am not on oxygen yet, but even my family has noticed that if I have a very active day it may take me a day or two to recover. We recently took a mini two day trip 2 hours away to San Diego. After shopping, site seeing I was simply exhausted at the end of the 2nd day. Having fun can certainly take its toil and then I rest for a couple of days. Usually I am not that active as I am retired and the main outing of my week is church on Sunday and out to lunch with family and friends. I wish I had the energy to do more, but my legs get so weak and SOB so if I can’t find one of those riding carts at a store, then I just can’t do it. I have a scooter, but I can’t lift it in and out of the car by myself.

[Gayle Meagher]

Bunny,
Sounds like you might need 02. Do you have a pulse oximeter? Have they done a CPET exercise test on you to see how well you use 02? Six min. walk? I have very scarred lungs, get SOB on exertion esp. if I have just eaten. I do really well if I don’t do but one outing a day. I am working on exercising more but it is so hard when you are on to breathe. I can relate to your legs getting weak. I have a mini trampoline that really agrees with me. I have difficulty walking on the treadmill. All the stories I hear is you have to persevere. I have come to peace wearing 02 in public; because I sure don’t want to sit at home. Be blessed.

[Brittany Foster]

Hi Gayle,
Like you, I am also on oxygen. It was definitely difficult to get used to wearing it in public. I have learned that I would rather wear it than only be able to walk for a short amount of time without getting the weak legs and dizziness. Are you on continuous o2 or do you do the pulse flow?

[Donna]

I had pretty much given up on shopping and have been doing online orders, until last week when I got an electric cart to shop at Sam’s. With my husband’s help and my oxygen on, I actually enjoyed it! I don’t know why I hadn’t gotten a cart sooner.

Had a stress echo today and am so exhausted…not expecting much out of tomorrow. When I get this tired I can understand a bad day or two (or three or four), but it’s the bad days after a “normal” day that throw me. Pressures were elevated quite a bit on the echo with exercise, though, so until I start on treatment of some kind, I realize I have to take it a bit easier and keep my oxygen on.

Thanks, all, for your replies. Brittany, I underestimate how hard this body is working, so I appreciate that reminder!

Donna

[Brittany Foster]

Donna,
you certainly are working hard and you seem to be listening to yourself and taking breaks when needed . I am glad you were able to find benefit from using the scooter. Mobility aides really help a lot of people feel as though they can “keep up” which does wonders on our mental health! it is always so exhausting and mentally draining going from a good day to a bad day. The good days certainly leave us with some hope for better days ahead though!

[Bunny Ferguson Benzing Sharp]

Gayle,I had the 6 minute walk test and although I was having trouble getting my breath it stayed at 96%. The doctor’s assistant wanted the doctor to see that I was so SOB, and checked twice but he was still with another patient. Doctor said it had to drop to 88% which it has and ever lower at home but not for him. He has referred me to USC as he says they are more advanced and he doesn’t want to wait until it might be too late for them to help. I am waiting to be approved by them and right now I am no longer in a hurry for an answer as my husband has decided to interview for another job which makes me very nervous as insurance will change and he is 66 and has been with the same place for 28 years and I am worried about this company as they contacted him once before and didn’t follow up. Although I am 76, I have not had to be on Medicare since he had me fully covered and if he changed then got laid off, I have no clue if I could see my same doctors or USC. So, I just have to pray and see what happens.

[Brittany Foster]

Hi Bunny,
please keep us updated on that. I love hearing updates from everyone. It must be stressful with thinking about changing insurance and not knowing exactly what to expect from them.

I know that many of my friends who have asked about oxygen therapy weren’t able to get it because it didn’t meet that cut off number . This is unfortunate because some people really will experience shortness of breath and symptoms when their oxygen drops in the low 90s but because of insurance reasons and reasons that are beyond our control, they don’t qualify. It is terrible that we have to get worse in order to get that.

My thoughts and positive vibes are with you!