“Woke up, fell out of bed
Dragged a comb across my head
Found my way downstairs and drank a cup
And looking up, I noticed I was late
Found my coat and grabbed my hat
Made the bus in seconds flat”
Most people can relate to the song. Even though it is decades old by one of the greatest rock bands ever, even in the 1960’s, people were pushing the envelope of the alarm clock, rushing about in the morning to get to work and punching that time clock to earn their wage. Most, like the rest of us, just wanted to grab a bit of happiness along the way. People with chronic pain and fatigue are no different. The biggest difference between us and them is everything; from rise to sleep takes tremendous effort. Things that most people do on autopilot, for many of us with chronic pain and relentless fatigue fight battles that would put Godzilla in a fetal position. So I decided to let you in on a day in the life of a person with chronic pain and chronic fatigue. I will present two scenarios; the tolerable day (I will not give the golden ‘good’ day, I only get about 5-7 good days a year…. they are precious, rare gems) and bad days which I get anywhere from 2-5 bad days a week depending on whether I am in a fibro-flare or not. I was in a horrible flare last week, for instance, so everyday was pretty bad. This week seems to be starting on the same note.
It is difficult to even know where to begin ‘my day’ because I am usually so racked with unstable sleep patterns….. bouts of terrible insomnia followed by days of 3 and 4 hour naps we fibro patients label ‘crash and burns’ that like Pink Floyds album “The Wall”…. it has no beginning and end….. it is just loops. Nonetheless, there has to be a starting point. Since I have been getting to bed at some point in the night/morning for at least a few hours (of bed sleep)… on a regular basis for the last several weeks….. I will start with getting up in the morning and go from there. I will describe a pain level 7 day…. tolerable and level 81/2-10 day which is bad. I usually am about 50/50. So here it is ….. a day in the life.
- RISE AND SHINE:
Getting up for me is a process. I don’t just ‘get up’ or ‘hop out of bed’. Morning stiffness is paramount with most progressive fibro patients and probably one of my top pain issues. For me it usually goes one of two ways: on a tolerable day I begin by removing my cat from me as he loves to sleep nuzzled next to or on my legs. It is ok, I already hurt so bad that having him nuzzle next to me is actually comforting. When I am ready to get out of bed I assess my pain level and begin with a slight stretch in bed. If I am at a tolerable 7 I can usually roll over and gently push myself to my feet. Once I do this, for the next 10-15 minutes I hobble about like an eighty year old would (sometimes using my cane depending on how steady on my feet I feel). Imagine walking bare-footed over rocks. On a bad pain level 10 day, I generally have to roll down, knees on the floor (being Catholic gave me years of practice for this) and get in the kneel position. Once I am in the kneel position I stay for a few seconds to get my bearings and slowly push myself to my feet and am hunched over like a woman of 100 years old. Many of these days, I just have to call Paul to come help me out of bed. If it is that bad, I literally cannot get out of bed without help. And that is very frightening. Now, insert a slight limp. It is documented on numerous medical records that I walk with a gait (limp) and I never knew this until Paul confirmed it
- MY DAY: Once up, I hobble to make coffee and get my hard working husband off to work. I will say, however, if I am having a bad patch… pain level 9-10…. he will get his own breakfast and make his own lunch. He is amazing with my illness…. the most amazing person in my life. Many of the people in my life do not even acknowledge its existence. While I certainly am not a drama queen and never complain/ vent to anyone except Paul (who knows I am just venting) and to my friends in pain on Face Book (for which we have closed groups for the very purpose of having a safe place to vent), it would be nice to be acknowledged once in a while that I am not normal; I am handicapped and even the most simple things such as going to church (which I have missed for weeks) is a devastating absence in my life. While people telling me to watch the sermon online is appreciated, I do not think people understand…. I miss the fellowship, the music, the laying of hands, the praise…… just being with other people who care! A box with the preacher is all fine and good, but nothing takes the place of the fellowship. Nothing can stand in place of that human touch and compassion.
Days go two ways: Staying home and going out. When I stay home I try to tackle as many chores as possible; dishes, laundry, tidying the house and sometimes a bit of ironing. On a tolerable day, I am doing good to keep the laundry topped off…. you would be amazed at how much laundry just two people generate. I do my best to keep the kitchen clean and cook dinner. I always say, if I can keep the laundry up, keep the kitchen clean and cook a simple dinner, I am proud of those accomplishments. Many people with the pain level I carry would be bedridden…. and bear in mind, I am on medication and still at this pain level (only below a level 7 less than one week a year). On a bad day, the laundry can keep and Paul will cook dinner. Now I make it a rule, the TV does not come on until my one daily guilty pleasure, “General Hospital” and then it is turned off again. I may be disabled of body, but I refuse to let my mind turn into a muddled wasteland of daytime television. I surf on the computer….. going on Face Book, check the local news, Pinterest, etc. Notwithstanding, I require myself to have focus and even if my energy is down (which a lot of the time it is), I will turn to a direction I can go without risking further pain or physical fatigue; One of two of my top passions, writing. That is why this blog post is here…. as I often say, if I can just reach or help one person a day with fibromyalgia or help one person understand it better, I have made a difference. I would love to become published someday, so I do take the advice of the published authors I know: write everyday; even if it is just 15 minutes. However, if I do not become a paid, published author in my lifetime, I love writing and fibromyalgia education is my mission! So a tolerable day: staying in and doing as many chores as I can manage, getting some writing in and cooking dinner. If I have a Doctor appointment or errands, they are carefully planned, and the only thing I do that day. Some days I get two or three things accomplished and for me, that is a successful day. For most people, that is nothing…. just a start…. a couple checks off a list. For me, that is a triumph. I think the best way to put it is this: Every thing that a person who does not suffer from chronic pain does…. from making coffee to doing dishes; from going to the store for a few items to going to the craft store to pick up scrapbook tape; from simply doing a load of laundry to just tidying up a bit to even going to work, something my Doctor…. along with the backing of each of my specialists determined was best for me… disabled me out of three years ago (and I am still fighting to get my benefits)….. every single thing with the exception of breathing takes double to triple the effort that it would for a normal person. Also, it is very important, on most days that I get some sort of a nap…. even if it is just for an hour. If I do not nap and put off naps day after day, I will crash and burn and sleep 12-16 hours straight. There is nothing in this world that is simple for me. Nothing. Also bear in mind: besides pain and fatigue, I deal with severe IBS, brain fog, chronic migraines, chronic nausea, depression, anxiety, sensory overload and numerous other (fibromyalgia) side effects. I also have a laundry list of tangible issues with my neck. My body is …. well, pretty much a train wreck. Towards the end of last week my gut was in a complete tailspin with my IBS being out of control. I took 24 Imodium and an entire bottle of Kaopectate in a three day period. As so often happens, we had to miss an event that we were looking forward to…. the annual kite festival. It is a festival put on once a year that is what it says…. a bunch of people flying kites of all shapes and sizes. However, it is free, it is in spring with the nice mild weather and it is just the right length of time to get out and enjoy the sights, sounds and feel of the season without over exerting myself. Yet, as so often happens, my body dictated to me: no going anywhere until I get this gut calmed down. I say this not to get any sympathy…. I do not want sympathy….. I say this to educate people what life with fibromyalgia can entail. Suicide rates among people with chronic pain is high and back when Dr. Kevorkian was in business he assisted in the deaths of several women with fibromyalgia. According to thirdage.com, “The suicide rate for people with chronic pain conditions is two to three times higher than the population as a whole.”
“Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying, “I will try again tomorrow.” ~ Mary Radmacher
- ERRANDS / SHOPPING/ APPOINTMENTS: Errands, shopping and Doctor appointments pose their own challenge. If I am in a flare….. like I am as I write this…… I will do the bare minimum. A few days ago serves as a good example. I had a 15 minute Doctor appointment in which Paul accompanied me. I then had to run to the store to pick up a few items. Dinner was leftovers so it just needed re-heating. I was shattered and fell asleep on the couch shortly after 8PM. I slept the entire night (with my normal waking every 1-2 hours as I always do). In total, I slept about 12 hours (broken sleep). For me that is a crash and burn. My body ‘turns off’ and forces itself to re-boot. Though I felt a bit better rested the next day, I still felt like I was the pinata at the receiving end of a gaggle of five year old children. The one I feel for most is Paul. When I have these flares and crash and burn, he has a wife that is out cold by 8 PM. That is not a fun evening after a long day at work. When I go to the store I often have a difficult time finding a disabled space that is available. Once I have done my shopping, I leave the non perishable, heavy items for Paul to bring up. Struggle; each and every little minute detail of my day can be a struggle. Paul always assists me with big shopping trips.
- NIGHT: Nights are bittersweet. After spending a day with only the cats to talk to or doing everything from cooking to laundry…. from shopping to a simple Doctor appointment as if there were a 100 lb ball chained to my ankle, I so look forward to my wonderful husband coming home. If the day is at a tolerable level, I have been able to prepare dinner. We have our dinner and, like most people, settle in for a night to watch some of our favorite TV shows. On the flip side, nights can be my worst enemy. Night time also means bedtime and for me I do not get up and go to bed like normal people. If I am able to fall asleep… and I say if because I am presenting this scenario from the standpoint of a tolerable pain level day in which *each and every night* Paul rubs my shoulders, arms and feet (reflexology) to help me relax. I often say, he is my favorite medication. So 99.9% of the time I fall asleep on the couch. It is what it is and I am trying to get to a point where I can get up, go to bed and fall asleep in bed. For me many of these goals are baby steps. In any event, the first time I fall asleep at night is just the beginning of my night 90% of the time.
If I am able to remain in bed, I wake up every one to two hours, without fail. If you have ever been to a very hot place…. imagine this place. Not just a hot place, I mean HOT…. as HOT as it gets. I am from Bakersfield, California and the hottest temperature I can recall feeling is 117 degrees F. however, after 105 degrees F. it all feels the same. When the sun settles in this really hot place the earth still radiates with the heat of the day. It is kind of a throb…. a sort of rhythm one can feel. That is what it is like for someone with fibromyalgia laying down at days end; our body throbs, bump, bump, bump with pain. It radiates outward to the point you are certain it can be felt by your spouse/partner. Many times I am up and down. If you have had a surgery or been in pain or had a bad cold, you know what it is like to be unable to sleep properly because of pain/discomfort. For us, this is nearly an every night occurrence.
If I have a bad headache or neck pain is flaring for any reason, I usually ‘sleep’ sitting up with a neck support pillow. This type of sleep is more of a twilight sleep, but any rest is better than no rest. In the case of insomnia….. where pain is so intense I am unable to sleep at all…… this is the worst night of all. Nights are the longest and loneliest when pain levels are high and sleep is nowhere to be found. I must remain quiet as not to disturb my husband…. a man working two jobs, without complaint. If it is the weekend I will generally be able to find something on television that is interesting but if it is during the week I do not even bother. I surf the net, write…. if I am feeling able to retain anything I read, I will go ahead and read whether online or a book. Usually, however, brain fog is high when I am tired and unable to sleep because of pain so I don’t even bother trying to read…. knowing anything I read will all be lost as soon as the words are read.
MANY TIMES WHEN OVERWHELMED WITH INSOMNIA, A PERSON IN PAIN WILL STAY UP AND SURF THE WEB OR WATCH TV. MANY TIMES YOUR LOVED ONES WILL FIND YOU ASLEEP OVER THE COMPUTER OR IN OTHER INTERESTING POSITIONS
The other thing that plagues me….. and this is not a fibro thing but does add difficulty to my sleeping problem……… is my recurring nightmare. This is very personal to me and quite dark. All the same, I feel it is necessary to mention it to give the reader an over-all view of my ‘day’. It generally occurs about 5 AM. I have tried to hide from it, miss it, lose it, trick it and everything else I can think of. It always finds me. If I pull an ‘all-nighter’ with pain induced insomnia, it finds me If I am able to get a nap or the next night, and it is generally more creepy and a lot more disturbing. So trying to trick this nightmare or displace it is futile. I do not know when or if this nightmare will cease so for now, it is just something I must accept.
TRYING TO TRICK MY RECURRING NIGHTMARE IS FUTILE AND ACTUALLY MORE TRAUMATIC. THE BEST THING TO DO IS LET IT RUN ITS EVERY 24 HOUR CYCLE
Then the morning comes and my ‘process’ of getting up/ crawling to an upright position and it starts all over again.
I cannot speak for any other or even a percentage of other fibro patients. We do, nonetheless, have many things in common…. morning stiffness, pain, fatigue, sensory overload, insomnia and so much more. So I think looking at my life as a disabled person with advanced fibromyalgia, Chronic Fatigue Syndrome, a load of ‘tangible’ issues with my neck and a host of issues like IBS, migraines, insomnia, etc related to the fibro, I think a day in my life is a fair overview of a day in the life of someone with fibro. As bad as it all sounds, I am not miserable and full of woe. Sure, I wish I did not have this monster to deal with. I would love to have the energy that matches my soul and passion, but it is the hand I was dealt. I have an amazing husband, beautiful children, a perfect Granddaughter who is the center of my universe and a Grandson coming in September who is the co-center of my universe! I have an amazing Uncle and though he is in California, he has served to be a tremendous support and second Father to me. I am not an unhappy person. Frustrated a lot of the time? Yes. Unhappy? No.
WHAT WE WANT: We want to be treated like anyone else you know. We do not want you to assume we ‘cannot go’ somewhere, ‘cannot babysit’, etc because we are in pain. A lot of time doing the very things people think was ‘cannot do’ or will ‘aggravate us’ are the very things that deflect our attention away from the overwhelming things that are happening in our body. We know what we can and cannot do…. let us be the judge of whether we are ‘up to doing something’…. we will let you know if it is too much for us. I often feel very forgotten and left out because other people do not ask me to go places/ do things/ help them out because of my illness. This is so far from what I want. We want our illness acknowledged and one of the biggest things someone can do to us is act like fibro is ‘over – exaggerated’ or ‘in our head’, etc. That is hurtful and so wrong. Trust me, someday the very people thinking/ saying/ acting out these things may be the very people who understand the very best.
WHAT WE DO NOT WANT: We do not want to be left out, forgotten and treated like freaks. Believe me, I already feel like enough of a freak…. with this monster that even my husband upon seeing the number it has done on my gut the last several days, “You are such a colorful, alive person…. I HATE what this thing does to you. I hate it… it just sucks the life out of you.” And it does. Every Medical Doctor worth seeing now will tell you fibromyalgia is very real. They may not fully understand it…. and (remember, I said I am gathering theories here… so take note, another theory for a later post)…. it is being shifted to a neurological disorder now over a muscular disorder. So the nicest thing you can do for the fibro patient in your life? Love them and include them…. unconditionally. I am speaking for myself here, but I am sure other fibro patients will agree….. I feel all the time that I am living life from the sidelines. I feel so very left out of so very many things. It would be nice to be included just once in a while in things with family and friends. I often feel like “FIBRO FREAK GIRL” because I am… well, a slave to this disorder. It is not my fault and I certainly did not ask for this hand I was dealt. If you ask us along, or to house sit, baby sit, dog sit or to help…… we with fibro will let you know if it is too much for us at that particular time.
Those of us with fibromyalgia need to be included, acknowledged, accepted and LOVED……. not just tolerated. Until next time, K.
******This post is dedicated to the memory of my Dad, Gary Coleman, 1940-2007. I now understand that though you made mistakes and I was upset about those mistakes for a while….. as a parent who has made my share of mistakes, I understand! We are parents, but we are people and as people, we are imperfect. You loved me and you also not only acknowledged my fibro, you but you cared about my health and pain! I also now understand that your pain and health really did prevent you in your last few years from coming to visit. It is OK! I understand now. And one thing is for sure, your dance on this earth was too short.
Oh very young
What will you leave us this time?
You’re only dancing on this earth for a short while
Will you carry the words of love with you?
Will you ride the great white bird into heaven?
And though you want to last forever
You know you never will
You know you never will
And the goodbye makes the journey harder still
MY DADDY AND ME WHEN I WAS ABOUT TWO YEARS OLD. IF I COULD ONLY TURN BACK THE CLOCK, THE THINGS I WOULD DO SO DIFFERENTLY. MY DAD’S DANCE ON THIS EARTH WAS NOT NEARLY LONG ENOUGH, BUT WHAT AN IMPACT HE MADE! I STILL MISS YOU DAD, EVERY SINGLE DAY!