The ‘Pains’ of Being in Severe Pain

The ‘Pains’ of Being in Severe Pain

Recharged and Rewired Brittany Foster

“Rate your pain on a scale of 1 to 10, 10 being the worst you ever felt.”

If I have learned one thing over the past few decades, it’s that pain is almost guaranteed when living with chronic illness and pulmonary hypertension. I have been through a wide range of physical pain in the past 27 years.

I deal with many “pains” while in pain. These include describing and rating my pain level, knowing the agony can get worse, staying on top of my discomfort and learning to manage it, and getting some type of control over my anger when I experience physical distress.

It’s difficult to find the right words to accurately describe pain. That being the case, doctors often ask for a number to rate it. Many do not realize that rating it is even more difficult than describing it.

At age 18, when an ovarian cyst ruptured, I told the doctors, “This is the worst pain I’ve ever felt.” I gave my pain a 10. By assessing what I have been through since that age, I would change that rating to a 6.

Now when I experience a great amount of discomfort, I find myself questioning, “Am I comparing the pain to my worst ever? Even though it’s not my worst pain ever, would giving a 6 get me the same care as saying a 9 or 10?”

Another of my “pains” is that the suffering can get much worse. It can increase in severity, intensity, and duration. There was a time when I thought I wouldn’t be able to physically tolerate much more. I didn’t think pain could get worse … until it did.

Now I know the pains of waking up after bypass surgery and not being able to move my neck. I know the pains of getting my ovaries and fallopian tubes removed. I have felt the soreness of waking up with a PEG tube placed in my stomach. I have felt chest aches that takes my breath away.

One thing is true for all types of pain: My body adapts to different levels. At some points, I feel like it even “normalizes” the discomfort.

Agony is not something that anyone should have to get used to. When it started to become my “new normal,” I had a hard time managing it and staying on top of it.

When I had severe suffering, it was difficult to take pain medications prescribed by my doctors because I feared dependency problems. I feared the stigma around pain medication, and I was stuck thinking about the dangers of addiction to these substances. I’ve learned the hard way that managing severe pain by taking medication as prescribed is the right thing to do.  

Not only does pain impact the body and my physical state, but it affects my mental state, too. Suffering increases my anger, makes me externalize my inner struggles, and brings out the worst in me. I cry at everything and anything, take things personally, and feel as though my emotions heighten.

Knowing this about myself, I give those around me fair warning: I’m honest about my mental health while managing hurt. My close friends and family know that the “Britt in pain” is not the same as the “real Britt.”

My body doesn’t want to endure more physical stress than it manages every day. Fighting through chronic illness and pulmonary hypertension is enough to stick my body in a constant state of exhaustion. When pain is added to this, my body gives out warning signs that it’s fighting too hard.

My “pains” have taught me to be honest with my healthcare team about how great my hurts are. I’m learning to manage it without shame and fear. It’s helpful to give my family and friends a warning when I am in distress because torment changes me. I remind myself that pain is not my fault. The body, like the mind, needs a break in order to heal.

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Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.

I am a 27 year old from the smallest state in the US, Rhode Island. I manage multiple chronic conditions, some are visible illnesses thanks to my oxygen I carry around, but most are invisible illnesses. I hope my posts “Recharged and Rewired” will show those reading that just because I need oxygen charged daily and my body is wired a little differently, doesn’t mean I can’t be the best version of myself every day!
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I am a 27 year old from the smallest state in the US, Rhode Island. I manage multiple chronic conditions, some are visible illnesses thanks to my oxygen I carry around, but most are invisible illnesses. I hope my posts “Recharged and Rewired” will show those reading that just because I need oxygen charged daily and my body is wired a little differently, doesn’t mean I can’t be the best version of myself every day!
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6 comments

  1. Brenda says:

    I too find myself in puddles of disparity. I have weeks of no empathy for anyone but myself. I pray. I take my meds but still life continues to worsen. I am no longer able to travel a lone. I have to rely on other people who do not understand what is happening to me. I feel like a burden. I cannot walk across the room without my O2 readings plummeting to the 60s. Exert yourself. Don’t exert yourself. I am so tired of this!!!

    • Brittany Foster says:

      Brenda,
      I’m so sorry that you’re going through so much pain and suffering. It really is unfair an I wish others didn’t have to deal with this so badly. It takes strength to take your medications and still do the right things for your body even when you feel as bad as you do. I have a lot of empathy for what you are writing and I hope that if you aren’t a part of the PH forums, you will sign up to be a registered member. We discuss topics like this in the forums and I know you will find a lot of support there too. I am one of the moderators for it.

  2. Frances says:

    Your words certainly resonate with me. I’m 63, female, recently called by my doctor’s nurse that my Echo showed PH. (I’ll meet with my doctor next week to discuss plans going forward.) I’m a longtime Fibromyalgia and chronic Lymes dz patient, formerly managed very well by opioids. I say “formerly” because my dosage was cut 75% because the CDC and DEA missed the mark and have essentially ruined my once-active life. If I sound angry, I am. My previous pain-controlled life was wonderful. Taking pain medicine allowed me to stop taking BP meds, anti-depressants; a whole slew of maladies are controlled IF YOU CAN GET A HANDLE ON PAIN! Now, I think of ways to tell my grandchildren their Grammy can’t cope any more and will be exiting life soon! Obviously I can’t do this, but when you are in constant, intractable, unrelenting, uncontrolled pain, thoughts naturally turn to getting away from it. Our dogs and cats are treated better than this. I’m sorry but I don’t know where the powers that be responsible for this madness are, or I’d be screaming at them. Thanks for reading.

    • Dear Frances, I read your story and felt very worried for you. Are you doing any better ? I also have fibro, PH, valve disease and MDS. What can we do to help you ? If you would like some ideas, please ask. Ellen

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