I need to Slow Down!
This week was a “busy” week. The week before, I got the news that I could start with cardiac rehabilitation. This would be, twice a week, for 6 weeks, 1 hour per session. It would be on a Tuesday and Friday morning. For this week there would be a small challenge but they said that it would be okay.
On those days, I also had some other appointments in the hospital. So I could combine them and I only had to go 1 time, each day, to the hospital.
On Tuesday, November 14, I had my second appointment with my social worker. This would be from 9:00 until 10:00. This was a good talk. The week before and one time in the weekend, I had slept very bad again. Just 2-3 hours per night. This gave me very negative thoughts. She told me that this was okay. As long as they were not too negative. I have already going through all my problems, for already 9 months, and it is okay to have negative thoughts about it.
After talking some more, she told me that I have to accept that I have to slow down. I need to think of it as I have a young mind/spirit in a (badly) broken body. My mind/spirit wants to do too much, but my body cannot do this anymore. She advised me to plan just one activity per day. No more.
Okay, for this week I have two appointments on Tuesday and Friday, it is okay because then I only need to come to the hospital 1 time. But for next time, try to separate it. And every day, take my moment to rest. Just for 1 hour per day, just after lunch. Try to sleep or just lie down and relax. Else, at the end of the day, I am broken and have no more energy to do anything else.
And this is true. Because at the end of the day, my battery is empty.
Not So Easy
This is not so easy, for me. In my “younger” years, I did a lot and just kept on going.
It is not so easy to just slow down. But it is true what she said. My mind wants to, but my body does not. And this is something I need to keep in mind. So many things I would like to do or sometimes need to do, but I need to try to plan things better. Spread them out maybe over several days.
This week I also tried to take my rest after lunch. Maximum 1 hour. The only thing that I am afraid of is, that if I sleep for maybe 1 hour, then in the evening I have problems falling asleep. But so far it looks okay. She also mentioned that when I have problems falling asleep, this also could be because of too many activities that day. Too much stimulation.
I will have one more session in December and then we think that that would be enough for me.
After the social worker, I had my first cardiac rehabilitation. This was not easy. The first half hour was on the home trainer. They had put it on the lowest setting. This was okay.
After that, they made some kind of circuit with different activities. All for arms and legs exercises. Lifting small weights, stepping up and down a platform, etc. Some were easy and okay, other were exhausting. I had to stop a few times because I could not go any further. This is also okay. With all of this, you also learn your limits and listen to your body. But during those 6 weeks, I should see some progress and that sometimes I could go further than this first session.
We will see. At the end of the day, my battery was empty.
PET Scan Results
On Friday, November 17, I had an appointment with the lung specialist, to talk about the results of the PET Scan.
A little bit nervous because you never know what they would find in the scan. She told me that the scan was clean. The lungs were okay. No scares, no defects, everything looked clean.
They only saw some activity around the artificial heart valve, like what they had seen at the beginning of the year. But not so much to be worried.
They also had scan a part of the lower part of the body, with the stomach and other organs. Also in there, they had seen some activity. But nothing that could point to, why I am coughing so much.
Her advice was, that I would talk to the Heart Failure group and see about my medication. Maybe make some changes or maybe stop with one medication. This medication is known for causing coughing, but I have already using it for several years. Monday, November 20, I already have a telephone appointment with someone from that Heart Failure group, and we will talk about that medication. She also will inform my cardiologist and see if there is more that they could do.
One More Specialist
She also told me, that she would try to make an appointment for me, with one more specialist. The internist. This is because of the small activities around the stomach and my loss of appetite. In preparation, I also had to pass by the leb to give some blood.
In the past, I also was seeing an internist because of my kidney stones. So I wonder if I will get the same specialist again or a different one. When this appointment will be, I have no idea. I just need to wait for the confirmation letter.
Who knows. Maybe it is a combination of medication and stomach or other organs that is causing this coughing. And maybe because all the antibiotics I had gotten at the beginning of the year, made everything upset.
I just hope they can find the cause. There are some days that I cough so much that my throat hurts. On other days I keep on coughing the whole day, sometimes just a few times. But I also noticed, that when I am tired, I cough more.
Again, we only can wait and see what they find and say.
In these past three days, I also had to double the dosage of my pee medication. Because there were signs that my body was retaining water again. So, I ran to the toilet a lot.
This could also be the cause of the reason why I am out of breath when I lie down on the bed, and that I have trouble falling asleep. I just hope that this weekend things will be okay.
So many things went through my mind these past few days. Especially when you cannot sleep or don’t have enough sleep. I kept thinking about what other people told me when I was in the hospital. That they admire my perseverance. That I don’t give up. But at those moments that you cannot sleep or don’t have enough sleep, you are fed up with those things. At those moments you are just trying to survive. Don’t get me wrong. I appreciate those things, but I am also getting sick of all the problems that I have. Sometimes you wish that things were back to before my pneumonia.
Before that, I could live a “normal” life. And now, I am limited in what I am able to do. This is the hard part to accept. For now, I can only hope and pray, that God will be with me, guide me and all the doctors, to get me in a better health situation again.
I know, something will never be the same again, but at least I can still hope and pray for it.
As always, please take care, and stay safe. God Bless.