Wednesday, August 21, 2013
As I've mentioned in the past, I am a member of a Fibromyalgia forum over on MDJunction. I read a post this morning authored by the daughter of a woman who has fibromyalgia. It touched my heart because any time a family member or friend reaches out to try and understand this disease and how it affects their loved one is important and special. We want to be understood and we need the support of those that love us.
I'm not including the post by this adult daughter because it's not mine to share. However, I have chosen to put my response to it here on the blog in hopes that it may help others to see the picture of fibro from a patient's viewpoint.
I'm going to keep scrolling up and reading your post so that I can respond to things you mentioned. But before that, I want to say that everything I write here are only my opinions/beliefs based on my own experiences with having fibromyalgia.
I think that fibromyalgia is a progressive disease of the central nervous system, including the brain/spine/nerves. Our pain does get worse over the years, we do become more debilitated by the pain and other things that often times go hand-in-hand with fibromyalgia. Those things can be: Irritable Bowel Syndrome, spastic bladder, tempomandibular disease (jaw disease), migraines, sleep apnea, just to name a few.
I also believe that even as fibromyalgia progresses, it can also go into remission for periods of time. So you have people who become better, more active, more like their old selves for a period of time but then when the remission ends, they may be worse than before that remission began. All of that said, some people never go into stages of remission.
Fibro can stay at the same level for long periods of time, it can have those remission periods and it can progress quickly. It's different for everyone.
As far as your mom being pill dependent: There is so little that gives us any relief from a pain that never ends. The question is never: Are you in pain? The question is: What level of pain are you in?
This is my thought regarding medication: We are suffering and if medication helps, we should be allowed that. We're not taking the medications for no reason other than the high they can give an addict. There's a vast difference between medical need and recreational use. People would not question a victim of cancer needing pain medication to help their quality of life, why do they question our need of them for the same?
There is a fine line for us, and believe me, we are aware of it - Take the medications and suffer less pain but sleep too much, feel lethargic and not really present in our own lives at times (or) do not take them, or don't take them often enough and feel that pain constantly but we're awake and mobile and present.
Think about this: When a person is in pain, any pain - a cut, a fall, a broken bone, a charlie horse in the leg, a headache - the brain only wants to focus on that pain. It's hard to think past it, beyond it until it starts to heal or you take aspirin or stronger meds. This is our life every minute of every day. We do not heal from fibromyalgia.
As for your mom's sleep issues - staying up all night and sleeping all day: Most, if not all of us have sleep issues. We have sleep apnea and/or we're chronic insomniacs. Many of us cannot achieve stage four of sleep which is where the repairing of our bodies happens. There are many forum posts about this on the Fibromyalgia forum.
We wish we could sleep like normal people. Go to bed at night and wake in the morning, rested and ready for the day. But, as I mentioned, this is a disease of the brain and since the brain controls literally everything the body does, our sleep does not escape its reach either. It comes to a point for us that we take any sleep we can get. A five minute nap at noon, a two hour nap at 4 a.m. A twelve hour sleep from noon until midnight.
You mentioned good diet, exercise, mental and emotional therapy, support system and positive outlook as things your mom can do to try and help herself. You're right, all of those are important. But, there's so much more to it. It's easy to offer up those things as helpful suggestions but not so easy to put them into practice for a patient of fibromyalgia.
Let's talk about exercise first. In my opinion, exercise isn't really about relieving our pain. Many of us report feeling worse pain and exhaustion after even the lightest exercise and/or stretching. The reason exercise is so important for us is this: It's about maintaining muscle strength, flexibility, joint fluidity and our ability to remain mobile.
We are in so much pain and constantly tired (due to that lack of good sleep) that we want to stay in bed and rest or sit in a recliner or on the couch and rest. Some of us do end up bedridden or wheelchair bound because we have given into that feeling of - I don't want to get up and move because it hurts me. The worst thing we can do for ourselves is give into that mindframe. We have to push ourselves, push through the pain, get out of bed, at least do some stretches, brush our teeth, take a shower. We must continue to live as normal a life as we can possibly manage. Simply put - use it or lose it.
Your mention of emotional and mental therapy for your mother: Also a great idea and much needed for many of us. Being diagnosed with an incurable, life altering and painful disease of any kind will put a person into a tailspin. It changes everything for us. We deal with shock, disbelief, anger and sadness. We go through the five stages of grief - if you havn't researched that, I really suggest that you do. It explains so much, and so well, what we go through.
Some people can go through those stages fairly quickly and get a good grasp on this new life that has been forced upon them. Some people may struggle with it for years. Just when they think they've found the acceptance stage and they're doing better, they take two steps backwards and have to deal with the sadness and anger all over again. I personally believe it's a never ending process, finding ways to accept the disease and our new lives within it.
Therapy can help a great deal with that but the key there is to find the right therapist. There are still too many people who do not believe in fibromyalgia. Or they think textbook answers and therapy will help everyone. Fibromyalgia affects everyone differently, not only physically but mentally and emotionally as well. Thus, therapy cannot be a one size fits all. We just want to be heard, someone to listen, believe in us and allow us to spill out the ocean of emotion that we feel over being sick.
A support system is the best thing any fibro-patient can have. Our family, friends - loved ones who believe and listen and help us. We feel horribly guilty for how our disease affects those we love. When one person in the family becomes sick, everyone feels it. We need to be reassured that we're not a burden, that we still have something to offer our families, friends and the world at large.
This is a complex illness that the doctors, scientists and medical researchers do not yet understand. Precious little is known at this point but there are many studies being done and things coming to light.
I agree with you that your mom can make small changes to her life and they will help her to feel better overall. Be as patient as you can, maybe offer to do some of those stretches with her. Most of all, just love her.
I have an adult daughter too - she's 23. I have such a hard time telling her or my adult son about being sick. I don't want to worry them, don't want to put this load on their shoulders. Moms think they always need to be strong for their children, even if that strength is simply not opening up about their illness and how it makes them feel.
Wednesday, August 7, 2013
I miss smoking. Not constantly, not in a way that drives me crazy to light up a cigarette. But now and then, the thought crosses my mind that I miss the relaxation it allowed me. For me, it was the habit, the comfort of those habits. Sitting in my office, at the desk, a cigarette burning in an ashtray, reaching for it without thought and taking that shallow drag. Just enough to fill my mouth with the taste.
It soothed me. That rhythmic hand motion while I talked with my Love or wrote thoughts and emotion, watched Youtube videos, read books or simply surfed the net. The mistake I made was tying the habit of smoking with my relaxing alone time at the computer. They seem forever mated in my mind.
I've purchased a rechargeable e-cigarette and cartridges. When I feel the need for those habitual hand to mouth movements, I reach for that instead and it helps. I blow out the vapor and feel like I'm blowing pain out with it. Fibro-pain or IBS-pain or headache-pain. It's one of my forms of release.
I won't ever smoke a real cigarette again. I was forced into that decision by the surgery that I mentioned a couple blog posts ago. I know it's better for my health, that I have made the best decision for my body. I focus on that and the days slip by. It's been three weeks since my last cigarette. I wait for a month, a year. I wait to quit missing that relaxing exhale of grey smoke.
Tuesday, August 6, 2013
My Rheumatologist filled out paperwork allowing me to obtain a handicap placard upon the approval of the state. I've had that placard for three years now. I keep it in my purse to use in any vehicle that I may be riding in.
Is it nice to be able to park close to stores or events? Of course. It helps to keep the pain manageable. Would I rather be healthy and able to walk any distance? Definitely.
I didn't want that placard. It's yet another symbol of being debilitated by a disease. Anyone that needs it will tell you that they wish they did not.
But what bothers me the most, what makes me feel a surge of anger and hurt, are the reactions of some people. I have had two different men, at different times, watch me park in a handicap parking spot, look down at the license plates on the car to see if it had the handicap insignia stamped upon it and when it didn't, they slowed their steps and glared at me.
I will admit that both times, before hanging the placard, I slapped it against my window and glared back until they had the grace to look away. I may be handicapped but both of my middle fingers still work fine.
I've had people watch me get out of the car and walk into the store. All the while, shaking their head in judgement, with a disapproving look that clearly said - She's obviously not handicapped. She can walk!
Is that the measure, the definition of handicap then? Whether or not you're in a wheelchair? Maybe if you have cancer and you're bald from chemotherapy, you're allowed to park in those spots without condemnation. But what if you're so embarrassed by your lack of hair that you wear a wig? Will people then judge you to be 'perfectly fine' and give you a dirty look as you walk into that store?
What if you're the soldier who lost a leg? If you were in a wheelchair and wearing your uniform, people would walk up and tell you, 'thank you for your service', often times with tears in their eyes. But what if you're that soldier wearing a prosthetic leg and jeans, not wanting to walk too far because you're still getting used to it. Would those same people mutter under their breath about the 21 year old punk-kid parking in handicap and faking a limp as he walked into the store?
Maybe you're the woman who has an incurable but not terminal disease. A disease that is invisible to everyone but those that know her best. Those that can see the pinched look around her mouth, the pain shimmering in her eyes, shoulders that hunch against the agony radiating through her body. You're the woman that forces herself out of bed every day to keep being present in not only your life but the lives of those that love you.
You're the woman who takes a cocktail of prescribed drugs when nobody is looking because to show how sick you are hurts your pride, your need to be strong. The woman that wants to work, wants to feel independent again but cannot. You're the woman who knows what suffering means, who grieves for the life you used to have while doing your best to find a new life with a disease that because it is invisible, too many people disbelieve and disregard.
And you're the woman who, because of fibro-fog, forgot how to get to Walmart. You pull over to cry in frustration until you remember the way again. And once you get there, relieved, and park in the handicapped spot, you walk into the store even as the pain makes your feet feel broken. Every step sends sharp, stabbing, aching and throbbing pain up into your legs. Your ankles, knees and hips hurt. Your spine and ribs are aching. Your purse feels like a 50 pound weight on your shoulder.
Through all of that and more, you choose to walk instead of using a wheelchair because your worst fear is losing mobility and the last pieces of your independence.
But you look just fine, perfectly healthy and so, there will be people staring, judging you for parking in a space they don't think you deserve. And I say to those people - live with Fibromyalgia for one week. Live with it the same way that I do. Push yourself as hard as I do. Demand as much from yourself on every level as I do, despite an agony that is 24 hours a day and without mercy.
Live like that cancer patient trying to hide their illness under an ill-fitting wig. Live like the young soldier who is missing a leg under the camouflage of a pair of jeans. Live like anyone who is handicapped but does everything they can to salvage their independence and pride. Do that and when the week is over, count your blessings that you can park anywhere you want and walk without trouble or pain. It's a gift you take for granted.
Monday, August 5, 2013
While looking through the blog roll of blogs that I follow, I came across this post and thought how accurate the list is that this author thought of. I wholeheartedly agree with all ten things she mentioned.
10 Things About Chronic Illness I Wish I Had Known In The Beginning
Take a moment to click on it and read - it's well worth it!
It's been a while since I blogged but a lot happened in that time away from here.
* Multiple visits to the E.R. because of abnormal (for me) pain issues. They finally found gallstones via ultrasound.
* A doctor appt. with my primary care physician who scheduled various tests to look inside of me.
* A lung scan for pulmonary embolism - came back fine. A biliary scan to see if the gallstones were blocking any bile ducts - nope.
* During the biliary scan, the techs decided to try and get me into surgery that very day because the stones were "rolling around like marbles in there" as they put it. The concern was that though they were not blocking a bile duct right that moment, they could be at any time. The next thing I knew, I was talking with the surgeon and then being taken to a surgical suite to be prepped.
While the actual surgery went well, my breathing during it and coming out of anesthesia went sideways. My blood pressure spiked and my blood oxygen level plummeted while I was under. I woke up in recovery in excruciating pain, began begging for the morphine button they always give a patient to alleviate that and was told they could give me -nothing- for the pain.
Since when does anyone have surgery and not receive pain medication as they are waking up? I've never heard of such a thing. Cutting a person open, sometimes multiple times as in laprascopic surgery and allowing them to feel the intense rush of agony all at once without the benefit of medications to make it a gradual process that one can cope with.
I woke up sucking for air like a fish on land, feeling as if a 500 pound man was standing on my chest, pain stabbing through my chest and abdomen every time I took even a shallow breath, let alone the deep breaths the nurse who sat beside my bed kept demanding that I take and slowly exhale.
I told her (that nurse) that if only they would give me pain meds, I could breathe better because it wouldn't hurt so much to inhale. She told me that stuff about my blood pressure and my blood oxygen level and words like 'spiking' and 'plummeting' are scary. When she told me they couldn't risk putting me back to sleep with the pain medications because if my blood oxygen level lowered any more they would have to take me back to surgery and intubate - I was beyond scared. I was terrified. That's when I knew things were bad and I started taking the deepest breaths I could no matter how much it hurt.
I focused on my nurse and saw the worry on her face as she looked at something behind my left shoulder so I turned my head back and looked too, to see the machine registering my blood pressure and oxygen level. Both were rather awful. I saw two nurses sitting directly in front of me at the nurses station and saw the concern on their faces as well. All three nurses were looking between me and that machine like they were waiting for something bad to happen.
Finally, my deep breaths and slow exhales brought the oxygen level up to something they felt was okay enough to allow me out of recovery and back into my surgical suite. I did everything possible to make myself better over the next few hours.
I could talk about those things, the facts of those hours, but I'm not going to. I have thus far only to give a picture of what happened from that factual, medical stand point and what my body went through physically. Here's what I really want to say in this blog post:
I thought I was going to die. That's how hard it was to breathe. I was struggling with every bit of strength I possessed to draw air into my lungs through the terrible pain the act of breathing inflicted on my body. I begged the nurses and the doctor to admit me into the hospital for the night because I was afraid that if I were not hooked up to machines and being watched constantly, that I would die.
Breathing is something we do without thinking about it but when you have to focus on inhaling precious oxygen because it's not instinctive, it now takes effort and conscious thought - that is life altering. You can't take breathing for granted anymore.
I've had sad moments since that surgery. I've been scared since then too. I want to live - even though the agony of fibromyalgia affects the quality of my life so much, I still choose to live and be present, to enjoy any and every moment I can.
I was alone at the hospital that day. My husband had taken off work and came to see me but then went home to wait for the phone call that I was out of surgery. He didn't return until it was time to pick me up so he didn't know what had transpired. He had no clue how awful it was, how touch-and-go it had been in recovery. My kids were either working or busy.
There was nobody there to hold my hand, to encourage me to breathe, to say they loved me, to share my fear, to make it better. There was nobody there who would have cried for me or with me.