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    • #12702
      Brittany Foster
      Keymaster

      Last week I was feeling physically terrible. It was the end of the week after a heat wave and I was physically spent. I had little energy, increased fatigue, was sore, bloated with swollen legs, and simply was miserable. I wasn’t wearing my oxygen as much as I probably should have and as a result, my mind paid the price.

      I had overpowering feelings of not caring about my health, wasn’t taking care of myself as I should, and spent an entire therapy session crying my eyes out in a state of hopelessness. I realized that my mood shifted greatly with the changes in the physical symptoms.

      I decided that it was time for me to slow down and give my body the attention that it so badly needed and the break that it was begging me for.

      I tell people all the time that it is so important to “listen to your body”, but I wasn’t taking my own advice at the time. I chose to stop and listen to what I truly needed, and it made a world of difference.

      That night after coming home from my therapist’s office I decided that it was so important for me to care for myself even more on the days that I am physically feeling “done”. I gave myself extra oxygen, always had my oxygen on (as directed by my physicians), gave myself time to rest instead of going out and feeling the need to keep up with everyone else, and took my medications and did my breathing treatments.

      The next few days it was as if I was a different person. I could think more clearly, was able to focus on getting better, had a desire to feel better, and didn’t feel as hopeless as I did a few days before. I took the time to notice when my body was asking for help and made the connection between how I was physically feeling and how I was mentally feeling.

      Do you suffer with mental health changes when you are physically unwell? What changes in mood have you noticed on particularly difficult days? What have you done to turn this around? What helps in these situations?

    • #12712
      Randolph Reynolds
      Participant

      Britanny,
      Absolutely, I have been using a portable concentrator for a couple of months. I dislike carrying it around but of late i have found that if I don’t my clarity of thought is reduced, as if part of my mind had drained out. This is especially noticeable in the early morning. People tell me to listen to my body and there are time when I am caught in a situation where I just have to stop what I am doing. I’m rather stubborn about finishing what I start, my volunteer work, so I rest as often as possible. I am not able to carry the portable oxygen with me, oddly I volunteer to visit patients at the local hospital, so this requires close monitoring. Before my condition got worse I could do these rounds with much less difficulty.

      My solution is to get back on to oxygen as soon as you can. There have been some comment about “brain fog” and that is what it feels like. When things begin to improve I can carry on. I should note that my anxiety causes me to become anxious and that drains my motivation. Looking for ways to defeat the anxious thoughts.

      I recently started subcutaneous infusion of remodgulin. The side effects exaggerate my other symptoms. The trick is to get the benefits without strong side effects.

      • #12736
        Brittany Foster
        Keymaster

        Randolph,
        I can certainly relate to what you are saying. I am definitely stubborn. Most people agree that I am “too stubborn!” I have problems with not being able to do something that I really want to do or not finishing something that I started too. I will use every last bit of energy in me to get things done and will use up my energy just to be able to say ” I did it!”. But in the end, this isn’t really proving anything and is just leaving me feeling pretty crappy and worn out.

        I have anxiety too and I have been trying to stay in a “one moment at a time” mindset. If I start thinking too far in advanced I can feel my body twitching with anxiety. There are just too many questions and thoughts that come with thinking too far into the day or the week. Concentrating how I’m feeling in the moment and doing what I can in THAT moment has been making a big difference. I try to ground myself by going for a walk when I have the energy or doing some stretching and yoga. Sometimes I just take time to pause, read a book, or watch a TV show that I like.

        Wishing you all the best! 🙂

    • #12713
      Robin Taylor
      Participant

      Brittany, so sorry you were feeling so sick last week! I’m sure it didn’t help that the weather was hot and humid on top of everything! With the somewhat “nice” weather, I have been trying to get a lot of projects done outside that I had been putting off when I was feeling worse. When I have good days, I definitely try to do too much, making for a low energy day the next.
      As I was reading your post, the thought came to me…why do we treat oxygen as something other than a “medicine”? I know that I take my pills religiously, but I sometimes “make a deal” with myself with oxygen. If we change our mindset to it oxygen is a medicine, not a choice, would it change our dislike of it???

      • #12735
        Brittany Foster
        Keymaster

        Hi Robin,
        YES! It is so strange that you say this because I have actually told this to people in the past and ironically have not used my own advice. I am seeing the importance of treating it like a medicine. I actually described it this way to the two children that I nanny. They asked me “why are you using your oxygen more?” and I said, “because my lungs need medicine too to breathe” and they understood. It shouldn’t be looked at as anything different ! Thank you for this and for thinking along the same lines as me! 🙂 We can support each other with this when it gets hard !

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