Having been in a moderately-severe pain crisis the past several days, I decided to write about how I feel while having a crisis. Hopefully this will provide insight to parents and others seeking awareness.
Mentally Foggy
When I’m in a moderate to severe pain crisis, the combination of the pain and the pain medication causes me to feel...foggy to say the least. It’s extremely difficult to think clearly; or type out a coherent sentence without having to correct a dozen spelling and grammatical errors. No joke; it took me almost a minute to type out that last sentence.
It Hurts to Talk
It not the best conversationalist when in pain. While in crisis I’m using all my focus to regulate my breathing and mentally cope with my pain. Also, it’s physically hard to talk when I’m having a severe pain crisis; I become short of breath very easily. In addition to it being physically difficult to speak with others, I have a hard time properly communicating my thoughts. The pain and medicine clouds everything making it difficult express my thoughts.
It Hurts to Laugh
Like talking, laughing can be very painful when I’m having a moderate to severe pain crisis. The physical exertion of laughing, and the amount of oxygen it uses, just adds hurt to the pain, or salt to the wound as they say.
Need Oxygen
For the past twelve years of my life, I have slept with oxygen at night. Without it, my O2 levels drop to 70% when I sleep. I have an oxygen concentrator. It’s a machine that uses the air in the room to create oxygen equivalent. When last tested, my machine was 98% comparable to pure oxygen. When I’m having a severe enough pain crisis, like right now, I use the oxygen when I’m awake and asleep. Sometimes I will use my concentrator for several days straight. It certainly helps.
Impatient
It’s very difficult to be patient when you’re in pain. In fact, I often don’t realize how impatient I am being with friends or family members when I’m not feeling well. And sometimes I don’t feel well for weeks or months at a time. I imagine being friends with a Sickle Cell patient has it’s own set of challenges; but we are worth it.
Food and Water
It’s hard for me to feel a desire to eat when I’m in a severe pain crisis. Pain can often cause nausea, so I think that has something to do with it. I also have to force myself to drink an appropriate amount of water when in crisis. And of course, this is the time when I most need it.
Don’t Want to Move
Sickle Cell pain isn’t like other kinds of pain; you can’t just work past it. It doesn’t take much to cause a mild pain crisis to transition into a really bad one. Sometimes just moving an arm or standing up makes the pain worse. Often, you can’t and/or don’t want to move in the slightest of ways.
It’s Hard to Read
Reading, writing, and drawing were/are things I can do that put little strain on me. However, there are times when the pain is so bad that it’s impossible to think straight enough to read or write. There have been times when I’ve tried to read a paragraph of something, and it’s taken ten minutes to get through it and understand it. Or times when I’ve tried to write something and I just can’t get it out. Pain alone will do that do you. Pain medication alone will do that to you. When you combine severe pain with increased and potent pain medication...an Einstein you do not become.
Physically Tiring
It’s mentally and physically tiring being in constant pain. It zaps you’re mental and physical strength. Sometimes, the act of lifting a glass of water is difficult and momentarily enhances your pain. As a result, getting up and doing anything is extremely taxing.
Run a Fever
It’s not uncommon for me to run a low grade fever while in crisis. As I mentioned in my “About Me” section, I came to my family straight from the hospital as a foster child. My mother had borne three children of her own before fostering and adopting. As an infant, before I was diagnosed with Sickle Cell Anemia SS, my mother suspected something was not right. Often I would cry as if in pain and run a low grade fever. That symptom of having a fever while in crisis has continued throughout my life.
Spiritually Numb
For me, maintaining my spirituality and feeling God’s presence is the number one most important thing in my life. Sometimes the combined effects of the pain and medication causes me to feel cut off from the spirituality I’m use to feeling. It’s not that I’ve done anything to cause that feeling; it’s just a byproduct of the pain crisis.
Stay Warm
For all Sickle Cell patients, this is always of great importance. It doesn’t take too much time in a cold room or being in the cold outdoors before a crisis can be triggered. Staying warm is extra important when in crisis. I’m even more sensitive to the cold when I’m having sickle cell related pain. In addition to wearing thermal underwear during the winter months, I have an electric blanket--that I’m using right now in fact--to stay warm.
Don’t Touch Me
Sometimes the pain is so severe that the simple act of being touched is agony. When in crisis, I don’t even like to shower; the impact of the water hitting my skin is quite painful. Being patted on the shoulder, having somebody rub my back, or having my cat lay on my lap (like she’s doing right now) can make my pain soar. When in a severe state of pain, I don’t want to be touched by anybody or anything.
Conclusion
Being married to, family of, or friends with a Sickle Cell patient requires a great amount of patience and understanding. There have been, presently are, and always will be days, weeks, months, or even years when I can do very little physically. I have lived with family who were either unwilling or unable to understand that, and it caused conflict. A great amount of conflict in fact; and that put a physical strain on my body that was not healthy for me.
My objective in sharing these insights with you is not to voice my woes. My purpose is to help family and friends of Sickle Cell patients understand what your loved one may be experiencing. Being informed and having insight will help you be more patient with that special person in your life.
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