My Diary Part 1: Life of a Chronic Pain Sufferer
Day one of this diary of the life of a chronic pain sufferer is the beginning of a journey between you and me that we will take together. It will be a journey of understanding, education and hopefully will bring to the forefront some compassion and change to the minds of those that did not see what happens to those that do have life long chronic pain. While it is easy to hear that someone suffers with chronic pain or that someone is a chronic pain sufferer, it isn’t always easy to put yourself in the other person’s shoes so to speak. With these diary entries in the next coming weeks, I hope to introduce to you, the readers, the insider’s point of view to being a chronic pain sufferer from someone that has been a chronic pain sufferer for over 28 long miserable painful years.
The main question for me is where do I start my day for the beginning of Day One? I mean there is or should be a starting time. Is it at the morning when I wake up to begin the day or is it really during the restless night when I can’t sleep from the pain and I wake up with the numb arms and burning, tingling ankles and feet? That happens after laying down at 11:30 p.m. whatever night it is. So there is my answer. I will begin the diary entry at 11:30 p.m. on any given evening as I lay my head to sleep on my pillow after a “normal” day of activities. I will have done nothing extraordinary. I will have not gone and worked out extra hard to make myself too tired or worn down more than normal. This is just another day in the life of me.
11:30 P.M. I am soooo Tired again. Will Sleep Come?
11:30 – I get into bed in my wonderfully comfortable bed that my beautiful wife bought for me when I first moved to South Carolina. I never had a brand new bed like this before and she wanted me to have something to help my fibromyalgia and my other chronic pain that I have. We ended up getting a brand new plush top bed. I was in heaven the first time I slept on that bed. We tried out over 20 different beds in the week we went out looking for beds. I lay on my back propped up slightly with pillows comfortably adjusted under my shoulder blades so that the angle does not cut off any nerves and make my neck tingle. If that happens, my arms, or fingers, or worse, both, will either go numb in the middle of the night or start a “cold burn”. It is those that experience that feeling of a “cold burn” that understand it. It is hard to put to words of how it feels. It is so cold it burns? There have been times that I have woken up unable to move either arm trying to shake from side to side so I could stop the burning pains in my shoulders and neck that originally woke me up in the first place. Tonight I am praying that I will just be able to sleep through to sunlight. (I haven’t done that in at least 6 months.. No, longer..)
It isn’t too long that the sleep timer on my TV goes off which was set for 60 minutes. I was asleep before it went off at 12:30 a.m.
1:03 A.M. UGH! What is that God awful feeling?
1:03 a.m. – Wake up for the first time with my shoulder too stiff from my fibromyalgia. (The muscle stiffness at night is a big problem for me along with the degenerative arthritis of the spine that I have. It makes movement very painful for me. When I sleep, I do a lot of subconscious movements and because of that I wake up often.) The pain has shot into my neck and back of my eye like a knife up from my shoulder very quickly once I moved when I realized I was awake. It feels like I got stabbed in the back of the eye it is so intense which wakes me up pretty fast. I am in the state of awareness where I am not asleep but I am not awake enough to see what is going on around me. I try not to wake up my wife as I slip out of bed holding my head. I get a cup of water, roll my neck a few times to hopefully relax a knot that is not there. I grab the back of my neck with my hand to squeeze it some and it give me a painful reminder that it is extremely tense. My head starts to throb. I put a cool clothe on my neck and I walk into the living room and sit in my recliner. I close my eyes and try to sleep there. It is now 1:27 a.m.
2:46 A.M. M*THF*CKER! WTF IS THIS!
2:46 a.m. – I wake up to an extreme cramp in the tendon in the bottom of my right foot. I mean it has me leaping out of the recliner yelling in pain. I hear myself yelling and in my own head wondering “who is that making that loud noise?” and it is ME! My body has arched in a twisted upward and awkward way almost having me fall face first into the couch AND floor at the same time. My wife comes RUNNING out of the bedroom from hearing me crying out in pain grabbing my arm as she sees me flailing outwardly (and with my eyes 3/4’s of the way shut too). My back locks up at this exact moment too. This happens way too often. It happens more than I would like it to. The lat muscles in my back (the big long muscles that run the entire length of your back from the neck to the base of your bottom.. where there are two of them it seems, one on each side of the spine) tighten themselves up so severely that I can feel them stabbing into the bones of the spine and HURTS in many small individual places like pins but very sharp ones. I would have to compare it to getting blood work in every pore in your back muscle, on each side of the spine, at the same time. Only when you get THIS kind of blood work, you feel each injection simultaneously and separately. There is no combination of the pain levels because they are close to each other, NOOOOO, that would be kind and merciful to your brain and body. Chronic pain sufferers do not get a break like that. A spinal tap is not close to the pain level that this brings even. The intensity is very strong. I have to put all my body weight on to the tendon on the bottom of the foot that has spasmed and locked up. It has locked up and pulled one of my toes towards my leg to which I cannot unbend and it feels like it is ripping off of my foot.
Thank GOD For My Wife!
With the help of my wife, I lean onto her shoulder, putting my body weight onto that leg and foot taking a deep breath in and suck up the pain on to the tendon as it absorbs the weight to stretch and release from its spasm. It does not always immediately release. It is ALWAYS painful to finish this process when it happens. (There are ways to avoid this from ever happening in the first place). I cannot put any weight on that leg after the cramp has passed. It has hurt the foot too much for now. My wife knows this and has gotten me my cane while she has held onto my arm. she guides me to my recliner or bed whichever is closer. By this time it is now 3:29 a.m. I am sadly WIDE awake from pain. I will not be going back to sleep any time soon. I grab my pack of cigarettes, my cell phone with headphones, my cane and walk onto my back patio.
3:30 a.m. – 5:15 a.m. – On the back patio trying to stop feeling the throbbing in your eardrums. After I get out to the chair on the patio I am more relaxed. It is one of my favorite places to go to try to get relief/relax. The chairs out there are metal rockers which are good and sturdy for my back and they “bend” or “rock” with my back too where it keeps my spine straight and pain free. When we first bought our house a neighbor was selling this patio table and set of 4 chairs for $25.00. It is the best investment I have ever made in my pain management history. It is now 3 years old for us and it STILL is MY favorite place to go when I am hurting and cannot get comfortable. I put my headphones into my cell phone and put on the Sirius XM Radio Application. I listen to whatever catches my attention at the time. Today it is talk radio about the NFL. It takes my mind off of what is happening inside of my body. That is the end goal of having the headphones. They are a type of therapy in themselves. They close off outside sounds by the type of head pieces I selected in the first place. I have several different ear pieces but for my night time, painful, waking, outside usage, wearing ones, (yes, lol, I may not call the ear pieces those by that name but that is when I wear them), they completely block out sounds from everywhere else but the earbuds. If I close my eyes while I have them on outside at night, it is so dark that it sounds like you are in a studio with whoever is on the radio while you are listening to it. For that moment in time, I try to take my mind away from the pain in my body. Instead of feeling the pain, I hope to feel a breeze in the air outside on the patio. I hear the voices through the earbuds chattering away talking on whatever irrelevant topic of the hour. I have my eyes closed while I am taking in as deep a breath as I can muster without feeling any aches or awakening any physical pains in my body. If I do that, then I will need to “start this process” that I am working on all over again.
5:15 A.M. All is quiet.. But Why am I still awake?
Finally by 5:15 a.m., I have turned down all the misfiring nerves and pain signals of my fibromyalgia and of all my muscle spasms. At this time I have no more sharp pains or locked muscles. I do have aching and very sore muscles and joints from when they were locked up. My spine hurts from when I contorted it earlier in the night too. I am very tired and worn out. I am ready to try to get some sleep somewhere. Off to bed again.
6:30 a.m. – mind wakes up. I open my eyes. I am SOOOO tired but I feel like someone just splashed water on my face and is holding my arms down with heavy weights. My arms are cold and numb. I can’t feel them. I am laying on my back. I try to lift them but when I do they start to hurt with sharp pain. I let them fall back to the bed and then they start to tingle like a rain of fire onto my arms. The tingling burns and hurts all the way into the fingertips of each finger on each hand. I flex out each hand as quickly as I can in a reflexive action from the sensation of the tingling in my limbs. It is very disturbing and I begin to shake out my arms as hard and violently as I can. I do not realize at this moment that I am now disturbing my wife who WAS sleeping next to me. My flailing right arm brushed up against her back and woke her but I did not feel it hit her in my frenetic mode. I was more concerned about lowering the intensity of the burning sensation in my hands and arms than seeing what they were bumping into in the darkness of my bedroom. Looking back on that a bit I think I must have looked like a lunatic to my sleeping wife. For her to look up dazed and seeing me swinging my arms around in the dark wildly for no apparent reason at some unknown hour of the early morning lol. I think I would have called her crazy if I saw her do that too if I didn’t know any better either.
After getting the tingling to settle, rubbing the blood flow back into the arms and getting, the feeling back into the arms and digits, I was now “up for the day”. This is my “usual” get up time each day. I get up at 6:30 a.m. alarm or no alarm but I usually do not have my arms numb. That happens once in a while or when one of the vertebrae in my spine/neck is pinched or out of alignment again. I go to physical therapy and pain management therapies to try to treat these conditions with very limited success to this point. Recent therapy appointments have triggered nerve damage and bad responses from my body. I have had to discontinue treatment until my body can recover from the last treatment which is now over a week ago but is still not handling well.
I go make the morning coffee for my beautiful wife and for my son who is currently home before he moves to an apartment of his own as he has wanted to do since he has graduated high school and gotten the career job he trained for in welding. While I let them sleep a little longer, I get their morning things together and mine as well. I take my morning pain pills now and grab a 32 oz bottle of cold water from the fridge. I also prep myself another one of those same 32 oz bottles but of iced coffee for me 😉
HELLO MORNING! LET’S START THE DAY OFF WITH A….
8:15 a.m. – I see them off to work and I settle into a seat and what happens inside my body? A wave of exhaustion comes over me like I was flooded in a dam break. My eye lids get heavy my head gets heavy on my shoulders resting against the head rest on the recliner. This all happens within a matter of 30 seconds. My vision swirls behind my closed eyelids as I slip into an instant, uncontrollable, deep, sleep.
11:30 a.m. – I wake up with drool on my chin feeling lost. I feel like I have been sleeping for days and that time has gotten away from me. I panic. I pick up my cell phone to look at the time and see that it is only 11:30 a.m.. I am ok with sleeping until now but I feel discombobulated (all jumbled up to those that are not familiar with that word) My sudden movements are not good for my body. For the initial waking up, the adrenaline helped until I found my phone and I saw the time. Once I did that, the pain in my lower back shot out like a cannon. It could be heard a mile away! I SLOWLY straightened myself back up and went to try to eat some breakfast but my pain levels made me nauseated. I was hungry but really in no mood to eat. I was going to have to wait until the nausea passed some before I tried to eat. I wanted to keep what I ate down at least.
How pain can make a day seem so long
12 noon – 1 p.m.- I sit out front on my porch in the shade as I take a nausea pill with another 32 oz bottle of water. I open my computer and educate myself on how to heal my body. I cannot take the way the system is working for it now. It is not working for it now. There are too many gaps that make a chronic pain patient feel helpless at times. By 1 p.m. I am getting more hungry and the nausea has settled enough for me to try to have something to eat. I eat now lunch.
2:00 p.m. – After making and eating lunch I usually will go outside into the fresh air of the backyard at my patio table. It is in the shade by now of the big pine trees of my yard. If my pain levels have not gotten too high at this point, I bring my computer out to the table with me and continue to do research out there for as long as I can tolerate sitting. It is usually an hour or so before I have to get up and take a break for a while. I am worn out after an hour in the backyard anyways. By 3:00 p.m., I come inside with my computer. I sit in my recliner and like the magnet it is, it sucks me into the world of sleep again.
3:15 p.m. – 4:00 – A quick nap. My body seems to shut down from its aches and pains it builds up during the day. Just from the walking, bending, twisting, turning, maybe even trying to pick something up during the course of the day, my energy is spent. It may not sound like a lot but with the level of pain that my body deals with daily, that tears the energy level to a minimum before tasks are started for the day. When I get to doing tasks, I run down to nothing very quickly. I end up crashing in the afternoon almost daily. If I do not take this little power nap, I find that I will end up going to sleep for the night in my recliner at 8 or 9 p.m. instead of going to bed at 11:30 p.m. like I like to do each night.
Daily Routine after I wake up from my spontaneous afternoon nap (usually)
5:00 p.m. – Family come home around this time so I have made more fresh coffee for everyone (including myself so I can stay awake with them and talk about their days). If I had pulled dinner out of the freezer then I would start to prep it for us too. Depending on the weather would really determine the amount of input into what I do in the evening. If the weather is wet, damp and/or raining/rainy, then I will be doing less over doing more around the house. My body’s joints and bones feel the humidity each and every time it rains or when a high pressure system comes into the area. Those days I can barely move without my cane. Those days I am more in the way than a help. Between 5:00 and 8:00 p.m. we will have dinner clean up, talk about the day and talk about the appointments I have set for the coming days with doctors.
8:00 p.m. – It is time to settle in for the night as it take me time to get my body to unwind from “dinner time”. My “guts” hurt from my fibromyalgia and other conditions. It is a nightly issue and can be challenging for me. It can take a bit for me to be able to relax or for better wording for me to get comfortable enough to settle in. Once I can find a position that I can “rest” in, I make sure that there is a fan blowing in my direction because my pain levels ALWAYS make me have hot flashes. (I can always put a blanket on if I get cold later on). I sit in my recliner next to my beautiful wife spending the evening with her. I usually end up falling asleep in the recliner. She wakes me up when she has gotten out of the shower and is ready to get into bed. by this time it is 11:00 p.m. and a day in the life of a chronic pain sufferer is over, ready to repeat. Hopefully it will be a little less interrupted during the overnight but chances are slim of that but one can always hope.