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Bad Sleep Hygiene

To say I’ve been having trouble sleeping is a monumental understatement. I wasn’t a good sleeper before I got ill – I had a sleep study years ago that confirmed I have a sleep disorder – and now sleep taunts me like a schoolyard bully.

A lot of the time I get the worst pain flare ups starting in the early evening. Whenever I end up in the hospital emergency room it’s because of one of these evening gifts. Most nights I convince myself that I can cope with the help of deep breathing; a mantra I whisper to myself at the worst peaks “the pain is not real”; or by numbing my mind with countless hours of internet surfing and TV watching.

I keep telling myself that I have to do something to fix this bad sleep hygiene. My efforts might work for a night or two, but as soon as the pain climbs it all goes out the window. My body wakes me at 2:00 AM, then 3:00 AM, then 4:00 AM, then… – I think you get the picture – until it’s impossible to stay in bed. Then about late-morning I struggle to keep my eyes open and have to submit myself to the pull of sleep, which only lasts for a few hours.

I read today that “it takes, on average, 21 days for a new habit to form”. I know this. I also know that I haven’t given my body a fair chance to adjust to the sleep needs controlled by my pain. To cope better I need more sleep. To keep my body strong I need more sleep. To hold on to my mental health I need more sleep.

Tonight is the first night toward forming a new sleep habit. I have decided on a bedtime and I will be tucked in between my striped sheets by that hour, full of hope that I will sleep through the night.

 

The Chordettes – Mr. Sandman

Pain Clinic #2

Later today I have an appointment at the pain clinic.

The pain specialist I’ll be meeting with is the one who completed my intake last summer. I like her because she is not only thorough she is also very sympathetic. She is an anesthesiologist who specializes in pain management. What that means is that she has extensive knowledge of medications in addition to how the body responds to pain.

Before I met her the doctors treating me questioned the probability that my congenital condition was causing me the level of pain I reported. When she examined me my responses to cold, heat and and external pain stimuli were not within normal ranges – I am hypersensitive to all three. She also confirmed that my range of motion is substantially affected by my pain.

When the pain specialist delivered her report, my family doctor/general practitioner finally stopped pushing me to take antidepressants – she believed my pain was psychological. Because of that belief she had a theory that a certain brand of antidepressant would effectively treat my pain – it didn’t even make a dent. Upon receipt of the pain clinic’s report, she finally conceded that my pain is very real and started prescribing the level of pain medications I need to cope with the pain. She also stopped making me take the pain-filled trek into her office every few weeks so she could ‘assess’ me, which was a welcome outcome because traveling to see her caused me a lot of extra pain.

My reluctant surgeon’s attitude shifted too. When I first met her last summer she was almost dismissive of me and my concerns. She actually told me in that first appointment that she had not reviewed my images ahead of meeting me and needed to schedule time with her radiologist to do so before she could complete my diagnosis. That did not fill me with a lot of confidence. However, after she received the pain clinic’s report she started investigating options for dealing with my congenital condition that might not cause me incremental long-term pain or have a long list of poor outcomes.

Without the pain clinic I imagine that I would still be foundering to find doctors willing to listen to me and develop the right treatment plan(s) or give the proper level of support for me to cope with my pain. It makes me hope that others who are living with chronic pain resulting from any condition/illness are equally as fortunate to get the level of care they need from their healthcare providers.

 

Three Days Grace – Pain

Admitting You Feel Pain Does Not Make You Weak

Yesterday I read the post of a fellow traveller on the pain journey. The writer wrote that feeling pain made him feel weak and that he felt alone because he couldn’t tell anyone in his life what he is experiencing. Those two statements rang true with me and caused my heart to hurt for him.

Admitting you feel pain does not make you weak. Admitting this is the only way you can get help. You need to tell your doctor about the nature of your pain – where you feel it and the intensity – so he/she is able to thoroughly assess you and give you the care you need. If your general/primary practitioner is not able to treat you effectively then he/she can refer you to the specialist(s) with the right skills to find the cause of your pain and design a treatment plan for you. I’ll be the first to admit all of this may not happen overnight, but it won’t happen at all if you don’t tell your doctor.

I also remember feeling alone. I created much of my loneliness. I refused to tell my friends and family about the severity of my pain and how it was limiting my ability to care for myself. Because I couldn’t admit I needed help they couldn’t help me or support me. I was afraid to tell them because I was afraid to appear weak. My fear and stubbornness isolated me and without the support of my friends and family I did get weak – physically and mentally.

The writer spoke of his struggle to act normal and to pretend he wasn’t feeling pain. I understand the need to appear ‘normal’. For a while I was good at pretending that I was coping well – there are moments when I still pretend as a way of holding on to my independence – but the pretense is exhausting. Trying to cope with the pain and inability to live life normally is psychologically painful. Opening up to the people in your life can ease the pain. But if opening up to the people in your life feels unsafe, try to find a therapist, psychologist, psychiatrist, social worker, or spiritual advisor with whom you can be comfortable sharing your feelings and fears. I’m lucky to have friends, family and a wonderful mental health group I can lean on. Without them I don’t know what I would do.

When the pain makes it difficult to interact try not to feel bad, and definitely don’t feel weak. Interacting with others for long periods when you feel pain IS HARD. It’s hard to be present with anyone when your mind is busy fighting to suppress the loud messages your body is frantically screaming out to get attention. The people who care about you will understand when you’ve reach your physical and psychological limits. If someone makes no effort to understand or makes you feel bad then maybe you should re-evaluate the role they play in your life because someone who cares about you will support what you need.

The writer has since taken down his blog. Before removing it he did thank me for the comment I posted. I hope that my comment of support stays with him and that he is able – sooner than later – to reach out for help.

 

UPDATE:
I’m happy to report that the writer who inspired this post did not remove is site. He responded to this post in the comments below. I think it’s so important for everyone coping with chronic pain to have a support system even if a part of it resides in a virtual community.

 

James Taylor & Carole King – You’ve Got a Friend