How do we fight fatigue? We have all dealt with fatigue in one way or another, but as an alpha-1 antitrypsin deficiency (AATD) patient, I deal with it in a unique way. I have struggled with it more in the past few years and learned how to defeat it.
Most people drink coffee, or a caffeinated drink to help them stay (at least somewhat) energized. Some of us, like me, have been told to stop drinking it because of how it affects us. I can have a high heart rate if I have a full cup of coffee, combined with anxiety. However, since that time I have discovered, I don’t have much of a problem with it if I just have a quarter of a cup. Since I discovered this, I have taken advantage of this “hug in a mug” as I think of it.
There are so many advantages to coffee. I like it because it makes me feel more energized and it helps me project my voice more. Under normal circumstances, I would be tired and quiet but coffee tends to reverse that.
That said, I need more than just coffee to “wake me up.” I actually combine it with just a little bit of ginseng. If I have more than that, I can get irritable. So, I have this liquid ginseng that would take 2 or 3 sips of in the morning (the sooner the better). If I have the entire vial of it or if I sip too much at one time, bad things happen. I have seen it happen to other people, too.
Many people have somewhat different reactions to ginseng. One of the reasons people like it is because it raises energy without raising the heart rate. But my friend Liz doesn’t like how it makes her feel.
She says it is worse than any issue from coffee and she doesn’t use it. Ginseng is definitely not for everyone and it should be tried very slowly and carefully to make sure it is going to help. It’s powerful in many ways.
Another thing that helps me feel less tired is augmentation therapy. I have noticed when I don’t have an infusion, the breathing and energy issues I used to face creep up on me. I know some people think it’s all in the head, but something good is going on with those infusions.
I keep up my water intake with each infusion. It’s probably unrelated to ATTD, but it’s part of my regimen for a day when I need it. I have also noticed that when I am not breathing well, I have more fatigue. So, if an inhaler or a breathing technique can help me breathe, I will often feel a lot more awake. That’s an easy step.
Read about therapies for AATD
And last but not least is sleep. It simply can’t be said enough. Sleep is there to refresh the mind and body and we need a proper amount of it. Can I make it on 6 hours of sleep? Maybe. I probably won’t do nearly as great a job as I normally would at work, and may have concentration issues. Sleep is not a cure-all and it doesn’t make tiredness go away, but less of it will make fatigue worse if you’re me. AATD just makes me need more sleep sometimes.
Stress and other things can make sleep elusive, but we absolutely need it to live. I can be very vulnerable to breathing issues at night. If they were gone, I would probably feel much better.
There are many ways to help a person with AATD find a certain degree of normalcy. But, for those with severe breathing issues, energy might get better for a while and eventually not be redeemable. These patients who have AATD should be warned not to expect their perky attitude to always translate into a good day physically.
There are a lot of days I don’t win against fatigue. However, I don’t have to prepare myself for failure when I have harder tasks to do. I still have these tools I can use to give me a little leverage.
When I feel sleepy at the wheel, I have to get out of the car, or simply get moving. I also take water with me everywhere I go. I can definitely find relief from this ailment and there is hope for others with AATD out there, too.