Fibromyalgia has been known by many other names, including chronic rheumatism, myalgia, muscular rheumatism, fibrositis, myofibrositis, and spinal irritation. The list of associated symptoms is an impressive one–never less than 3 and frequently a lot more than that, a virtual litany of problems that relate back to that single diagnosis. Whether your doctor is sympathetic and refers to it as “fibromyalgia”, or he says that “fibromyalgia is a ‘junkyard’ term” (which my newest doctor actually said)…at least physicians seem to agree that the predominant symptom is chronic pain. Which they are required to treat, according to the law.
“Chronic pain”. Two short and simple words that fail utterly to accurately describe the reality of life with never-ending pain. “Chronic pain” is like a password, the secret code word that opens the portals of an exclusive club. Well, not that exclusive. This disease affects between 2 and 4 percent of our population, mostly women. Men who are diagnosed with fibro may find it difficult to get the proper treatment they need because it is associated with women’s health. (Here is a good site to use as a starting point, either for you or to help explain fibro to your family and friends.)
If you’ve had fibro for more than 10 minutes, you know about the “tender spots” and “trigger points”. You’ve probably heard about “soft trauma” and a handful of other terms that all basically mean the same thing: pain. Doesn’t matter how it gets started, only matters that it never ends. Even with medication, the pain is always there, just waiting to take center stage again. You have to choose between having a clear head and ability to think coherently but suffer the pain, or take enough meds to reduce that pain to a murmur in the background…while you are literally Dopey, sleepy and basically not safe to operate any machinery–from driving a car down to using the toaster.
Chronic illness of any sort takes over your life. Chronic pain just makes the inevitable losses that a chronic illness requires that much more…well, painful. To be blunt about it, certain chronic illnesses (or more accurately, “chronic medical conditions”, hereafter referred to as “CMC”) are visibly limited–people in wheelchairs, missing limbs, paralyzed, or blind. Fibromyalgia is just one of the invisible conditions that are as limiting, as devastating as being paralyzed. With these invisible CMCs, someone can’t just look at you and realize that you have limitations.
And if you thought the list of associated symptoms for fibro was long…the list of what it limits, the things it will steal from your life is longer. Much longer. Chronic pain affects everything you do–or don’t do, or cannot do any more. And I’m not talking epic events. I mean things like cooking dinner, making a bed, washing yourself. What other (healthy) people do every day without even thinking about it–requires planning and adaptation for those of us with any CMC.
Receiving a diagnosis of a CMC is like being told your mother died. You have to go through the Kubler-Ross stages of grief: anger, depression, denial, bargaining and acceptance. And there is no time frame for any of the stages, nor do they necessarily line up in that particular order. There is frequent overlap between two or three of the emotions listed. And sometimes, you just don’t get past one of them…maybe two. And sometimes you’ll think that you’ve gone through them, arrived at the end and have accepted the loss of your old life–and then something happens that make you realize you were fooling yourself. And the grief cycle begins again.
Depression is the symptom that is almost synonymous with a CMC, particularly one like fibro that has so many limitations. Why wouldn’t you be depressed, when faced with a body that never stops hurting somewhere, with new inabilities cropping up, when you realize that the life you thought you’d have can never be, no matter how hard you try? And depression is anger turned inwards. Our society teaches women in particular to be soft-spoken, to be gentle and to never, ever express such strong emotions as anger. Fuck that. You heard me. If you’re feeling angry, you have every right to express it — loudly, with a lot of swear words, or however you want to. The only caveat is that your expression should not hurt you–or anyone else. So suicide or murder are not appropriate expressions of anger. Throwing china can be, if you’re willing to clean up afterwards. (Or if you have a loving someone who will hand things to you for you to throw and will then clean up for you.)
Be angry. Feel depressed. Grieve for your life, because it’s changed completely the moment you truly acknowledge that all these vague symptoms add up and your doctor has diagnosed a CMC. You could do what I did, which was to announce loudly and in front of other people that “I will not allow this disease to define who I am.” Right. Within a month, I realized that “this disease” had been defining my life for literally YEARS. I figure I began having fibro symptoms perhaps as young as 13 years old, but definitely by the time I was 15. I had the tender points–couldn’t stand the boys coming up and poking me in the ribs. I never laughed, and when they complained that I didn’t react “properly”, I told them that it hurt. Which it did.
I have had vague aches for as long as I can remember. While I was young I could just “push” through them. I managed a 4 year stint in the USAF; got married, had children. But looking back from this point in time, I realize that I began accommodating my aches (which were growing into pain) in a variety of ways. For example, I would clean the house. You know, dust and vacuum, put things away, take out the trash. But I did not do all the tasks in one efficient blur of cleaning. I’d work for about 30-45 minutes, then sit for about 15 before resuming the chores. This is when I was but a mere child of 28 or 29. And so gradually I didn’t notice it, that 30-45 minutes of “up” time got smaller and I required greater time to rest.
The aches had gotten full grown into pain, on a very regular basis. It was localized in my hips and knees so I wasn’t thinking “fibro”–hell, back in 1992, no one used that term. I did go to a rheumatologist, told him I had pain in my knees and hips. I got spend $500 for him to eventually tell me that I had pain, located in the knees and hips. Hot baths and aspirin were his prescription. I had already been doing that–and there’s just so much time you can spend in a bathtub. And so I lived on, making small adjustments as I needed to but never thinking of them cohesively as limitations because of my health.
Time passed, as is its usual manner; the kids graduated high school and went out into the big world. I lived alone for the first time in my life. I kept the house clean–but it was 10 minutes of task time, then 20 or more to rest before hitting the next 10 minute task. I began to have neuropathy–a fascinating pain, more like hot lightning than stabbing or thudding. I was becoming (even more) clumsy–my father used to tell me that I couldn’t walk and chew gum at the same time without falling. I began avoiding stairs whenever possible. My sleep patterns were fractals, at best. I had worked night jobs for 6 years and figured that the 4-6 hours I was sleeping was because of that.
I have had stress incontinence since the birth of my first child. (Thanks, kiddo.) Suddenly, I also had IBD (or IBS, depending on whether you consider it a disease or a syndrome). I would have no warning, no cramping or gas to let me know I’d better head for the loo. So when the first sensation of pressure appeared, I’d have about 3 minutes to find a porcelain receptacle or I would, to be grossly blunt about it, I would shit myself. Dear gods, I was only 46ish and I was not ready to be wearing Depends…
In 2010 I met and married my dearest love. He also has CMC, both physical and mental. So he had a very good relationship with his doctor, whom he had been seeing for about 7 years. He took me in for what was my first real physical since…the Air Force? That was in June. For the next 4 1/2 months, I began to really pay attention to my body and what was going on. I had quite a list of things…damn. I did exactly the wrong thing and went onto WebMD to check out the symptoms. Each item on my list had its own list–but they all overlapped at “fibromyalgia”. So I went back to the doctor and told him what I had discovered. And he told me that he had thought I had it, the first time he saw me. Well, gee, Doc–ya coulda saved me a lot of time if you had just said it then. But he also told me that he preferred to have his patients identify it for themselves because it was still considered a “throw away” diagnosis, something to tell a patient, giving their problems a name and make them go away.
I have to say that giving my symptoms a name seemed to open the floodgates of fibromyalgia. It poured over me and flowed into every single aspect of my life. It seemed that by admitting I was sick, I was suddenly aware of just how sick I really was–and apparently had been denying, “pushing” through it for quite a while. Within a year, I started using a cane for stability and had to stop working. Within two years, I was barely functioning as we experimented with the necessary medications to get the right ones at the right dose. At year three, I was in a really bad way because the VA doctor I was seeing then removed me from pain meds and then overdosed me on my neuropathy pills.
At that point, I was also dealing with Beloved’s month-long stay in the hospital–caused by gross incompetence: the doctor sent him home three times without addressing the reason we had gone there in the first place. He was having intractable vomiting and couldn’t hold down anything–and that went on for 3 weeks. You can die from dehydration, you know. So needless to say, I was an emotional wreck–which of course affects the body. I ended up at the main VA medical center, with instructions to be admitted for psychiatric evaluation. I had every sign of a panic/anxiety attack, and the most beautiful British accent. I’ve told you about it before so I won’t go into the gory details here.
We apparently moved, although I barely recall the cluster fuck of getting our apartment emptied out. We arrived in Eureka CA on November 2, 2013. Our problems haven’t gone away; some have gotten worse. I have had my adjudication with the Social Security Administration’s judge–and been “declined” again. I will now move up to the appeal board–and if they also “decline”, then it’s into Federal court. With the move, I of course have had to change lawyers and the new one inspires trust in us that we can do this, and that I will (eventually) be declared “permanently disabled”–and collect SSDI. (Could take up to 4-6 more YEARS. Erk.)
In the meantime, we are living on just Beloved’s SSDI check, food stamps, food pantry–and the incredible generosity of his parents. We do not regret the move–if we were still in Northern Virginia with all of the same things happening…we’d be living in my in-laws spare bedroom.
So actually of this has been to set the background for my main discussion: The Pain of Being Touched and the Heartbreak of Not Being Touched. My story is not unique; anyone with a CMC has a story like it. Since I know fibromyalgia best, I’ll just use that from now on–but if you have a different chronic condition, just substitute the name of yours.
Chronic pain, as I said in the beginning, is completely inadequate to explain what the person with chronic pain has to live with, has to deal with on a daily basis. It’s the sole indicator of whether you’re going to spend the day in bed or if you can actually make some chocolate chip cookies for your grandchildren. Chronic pain dictates if and when you shower, wash your hair, actually get dressed (in real clothes and everything!). And they aren’t kidding when they talk about tender points and trigger spots–what would be an incidental bump for someone else ends up causing such pain that you are now on the DL and the coach has to send someone else in to play for you.
Chronic pain makes all of your choices: will I type emails to my friends, join discussions on Facebook, play solitaire–or watch NetFlix because I can’t do the necessary hand motions to do those other things. Will I be able to concentrate enough to actually read (and retain) a novel? I want to finish crocheting the blanket I am making for my grandson. Begun before his birth, it–and he–are now 3 years old. I also have another grandchild that needs to have a blanket from me–and my grandson will have a sibling next May. That makes me 3 blankets behind.
Chronic pain. Do I have enough energy to essentially ignore the general “normal” level of pain, medicated with my good friend, Vic (Vicodin) that I can cook a hot meal? I was going to be a personal chef; I made gourmet foods–now, I am just a cook. Nothing wrong with being “just a cook”, but for me…it’s a demotion. And if I am not able to cook, I cannot justify spending grocery money on going out for Chinese. But we (too) often end up doing it anyways.
But never mind all of that. I know that having fibro means major–and endless–changes to everything in my life. I get that part. What snuck past me was that having fibro means enough pain that it hurts me to be touched. I’m not talking “punch in the face” touch, I’m talking the gentle pressure of a hand on my arm, the enveloping joy of a hug. Fibro means not extending my hand when meeting new people because the shaking (and the sometimes crushing grip) hurts me. It means not cringing when the sweet puppy leaps up into my lap.
Chronic pain has locked me away from touching, from the sensation of my flesh and someone else’s flesh joined in friendship, comfort–and yes, in making love. My dear Beloved knows that I hurt, that it hurts to be touched. So he’s very careful to … not touch me. He will rub the back of my head as he passes by, or pat my hip when we’re going to sleep. But hugs and kisses, what used to be a steady diet of loving touch…not so much any more.
I am a very tactile person–what a lot of people refer to as “touchy feely”. And chronic pain, damned chronic pain…has made my own body a prison that excludes even the most casual sensation of flesh on flesh. And that most intimate sensation of flesh on flesh doesn’t happen at all… Making love is all about flesh on flesh, the intimate bonding of two people, a ritual of love that strengthens their commitment even as it celebrates their union. Denied to me. By this unending, godsdamned, fucking chronic pain.
I need to be comforted, I need to be touched and petted and yes, physically loved by my husband. I want to hug my children, grandchildren, friends, people at church. I want to shake hands when I meet someone. I’d love a massage. I would LOVE sitting snuggled up to Beloved, with his arm around me. I want a dog.
I literally ACHE with the need to touch and be touched. Skin hunger overwhelms me and I’m starving for human contact. And then Chronic Pain rears its ugly head and reminds me that I will have to choose between more pain with contact…or no contact and no worsening of pain. Pain is a powerful training method, used with incredible success for many years in many different places and circumstances. If this was inflicted by an external source, I’d have something to rebel against, have a revolution to free me again. But alas, my tormentor is me. Well, my body.
And so I ride on the see-saw (teeter totter, depending on where you’re from)…it hurts to be touched … but … it breaks my heart that I am not being touched. Frankly, it all comes down to this one question: Am I willing to accept the pain that the contact will cause because the contact itself will provide emotional healing? Which outweighs the other–the Chronic Pain Monster or the sacred human interaction? And it’s not even so much “will I pay the price” but “CAN I pay the price”.
Did I mention anger, depression, denial, bargaining and acceptance? I only go with 4 out of 5 when it comes to skin contact. There is no acceptance of being untouched, of having no tactile connection with my fellow travelers in life. I am stubborn and I am always, ALWAYS going to choose to be touched. I will deal with the devil of chronic pain because I have to–but I sure as hell am not going to let pain take that away. It’s done its damage to my entire life–changed it completely, added limitation upon limitation. But this is one war it will not win. I cannot let it win–because if I do, I lose my own humanity and life is worthless.
Chronic pain can kiss my ass.