By: Dr Alex Robber
My letter to Fibromyalgia
Dear fibromyalgia, I hate you right now! You are a liar, and you are an imposter. In your own definition you practice deceit…’ widespread pain and tiredness,’ when you are actually so much more than that; too much to remember.
You are not a life-threatening illness (at least I am grateful for that), nor do you manifest with distinct symptoms which are evident. You are a thousand ambiguous signs, some seem too insignificant to list but to some degree you plague my life with all these little traits every single day.
Not only are the general public, including certain friends and relatives, unaware of your real existence or misinformed about it, but so are most of the medical profession. You are written off as obsolete or unimportant, or even made. How I wish that was true… I wish your effects were really’ minor’ or’ negligible.’ You are a master of disguise, hidden from blood checks, scans, samples of urine and even physical examinations. You’re there for someone else to see all the time and yet, I see you every day.
You slowly crept up on me then exploded like a volcano before I was forced to pause and remember. Your recognisable efforts are almost admirable.
You ate up my mind, my executive ability…. A specific vague word,’ fibro fog.’ In fact, it means that my vocabulary is now that of most days a 12-year-old, (by the way I used a thesaurus). Trying to express my feelings is a challenge that I still end up losing. I can’t multitask at all anymore because if I’m distracted then all I’ve been trying to do is a lost cause.
It’s almost impossible to think clearly anymore and do anything (such as this letter) that I have to be’ in the zone’ and that’s draining. It really took me three days to finish this, stop and start… Either the pen is too big, my fingers are too hard, or my mind just won’t cooperate. I get twisted tongue trying to make a statement and speaking basic words out loud has become a real challenge and an embarrassment.
What else did you deprive me of?……… The list is endless, so I’m going to have to sum up…. My energy: you’re leaving me with a paltry amount, and that’s a good day. It would take me 4-5 hours on a bad day just to prepare myself for a shower. It will take every ounce of energy that I have to move around and do basic tasks I wouldn’t have given a second thought a year ago.
It’s not the same as’ tired’ being. It’s like any step is like trying to push through quicksand and it takes an age to process any thought or piece of knowledge. Now, I’m also clumsy beyond measure, whether it’s going into door frames, dropping things down or misjudging distance etc.
My youth: Well, 36 isn’t necessarily young, but neither is it definitely old. I can’t go out anymore and spend time with my friends and family and even my kids as I wish.
I’m sure you’ve aged me about ten years in the past year, and that’s just on a superficial, cosmetic level; my hair is so much thinner and falls out daily, my nails are now brittle and riddled with ridges, my face has numerous blotches or rashes that were never there until you arrived. My body mentally feels like the majority of days are around 75 years old. All the time, I ache and my knees crack and pop. I no longer have the power to open bottles or cans.
I’ve managed to keep down my part-time work so far but by the day you’re making things harder. I’m on my feet all the time, and my knees and back are hell. I won’t let you take it easily though, you know I can be determined too.
My stability: Existence…. I don’t know if you’re going to be relenting some day early and I’m going to start feeling better, or will your persistence prove persistent and I’m going to decline even more? So much confusion lies with you. My relationships are secure…. Often my feelings can get better of me and I can drive people away or take my anger from them. Some people don’t understand you at all, because I think you’re invisible, which puts stress on such relationships because I feel I have to constantly show that you exist and justify the impact you have on me. Often I sound like a fuckin’ or a neurotic.
You took my power away…. Once I was strong and now, I feel helpless as a child, mostly on a physical level, but some days my strength is poor and there is no fight left in me. Some days, I feel like holding up two fingers and asking you where to go. I don’t know if that’s the’ right’ approach to have, maybe I should learn to make friends with you (seeing you’re going to be a permanent part of me), try and understand you better and make peace with you. Maybe one day but that’s hard to imagine right now.
You’re making me so unhappy with Jesus! Whatever role I try to get into, I can hardly ever find comfort anymore (resting my head in one of the few positions on Steve’s lap). The sitting becomes uncomfortable and after a short period, getting up or moving around is painful. My feet are throbbing and burning, my legs are pulling and twisting, and my back is agonizing, so much so that I’ve been persuaded that I’ve begun my cycle many times because the pain can be identical. Discomfort is the new standard.
I am having muscle spasms in different areas. This has impaired my swallowing reflex, given me twitches in my eyelids, hands that spasm while I’m driving and so on, also affecting my bladder, triggering a sudden urge to pee even though I’ve just been. The latest outcome of those spasms is an irritated nerve. Apparently, the muscle (in my neck) contracts around the nerve, causing inflammation, this gave me a numb thumb and forearm and caused a lot of pain in my arm and shoulder…
Whether I can sit or lay down is also seriously limited. When I move my arm somehow it begins to’ fill with wet sand’ or’ strong spiders’… As I describe it, it’s incredible the odd ways you come up with to try to explain pain…… Burning, cramping, pulling, squeezing, soft, hard, painful, gnawing, rigid, frail, slicing, electrical shocks, needles throwing at me…. Just to name a couple.
Indeed the “main signs” are pain and tiredness. That’s bad enough to be truthful, but you’re also taking along too many of your near friends (symptoms or disorders that typically occur alongside but aren’t necessarily symptoms of fibromyalgia) as a consequence of your involvement though….
Postural hypotension: Dr’s tell me it’s natural to feel dizzy when you stand up too quickly. Ok thank you genius, what do you guess? I’m no moron and I realize this already. What’s not natural is to be on the verge of passing out twelve times a day. I would get up as usual and my head would start spinning, my vision would be blurred, and I would get the feeling as if I were on a fairground coaster. Just when I thought “I’m going! It would be fine, but sometimes I would feel wobbly and dizzy. But it’s all right, because this is’ natural’!!
IBS: It’s apparently very normal to suffer from this alongside you. I’ve learned to live with it but fight the nausea. If I have an IBS flare up, I just take my anti-spasm and anti-sickness pills so it’s’ okay’ (rattle rattle).
Multiple sensitivities: My skin got irritated when it hadn’t been before. Especially sensitive to heat and sunlight (absolutely no sunbathing done this year). I now have a persistent pattern of rash in my arms and chest, which is getting worse in the sun. When I shave my legs I eventually end up with dry skin and razor rash marks. I have never used so much hand cream in my life and I am grateful that my fiancé applies cream almost every day to my feet and legs. So much noise confuses and irritates me to the point that I can’t even think.
Anxiety and depression: I have already witnessed yours with these buddies. I have learned to deal with them again, and to keep them medicated. They’re already putting constraints on my life and now I’m going to need to be extra careful.
There’s an infinite list of other factors that coexist, some that I don’t have, not yet anyway. I’ve read it’s more the law than the exception I’ll end up dealing even more. Some people think you’re not’ true’ to’ all in my mind’ because they’re either ignorant or misinformed. Ok I need to tell them this…. I have spent much of my life struggling with’ things in my brain.’ I know what it’s like to suffer from anxiety brought on by actual physical symptoms. This is not the same… I could not cause a huge drop in blood pressure to occur each time I stand up, nor could I actively spasm my muscles. Regardless of fear, I don’t get a blotchy red patterned rash on my arms and I don’t experience intense pain going across my legs ‘ bones because I’m stressed because it’s rude to say that.
I’m filled with anger, anxiety, remorse, self pity and insecurity right now, but I’m going to adapt and make the required adjustments to improve my quality of life. I don’t know what’s going on, hell, I don’t know how I’m going to feel a few hours from now, but I know I’m just as committed and stubborn as you are, so I’m going to find ways to hold you in control. You don’t describe me or who I am, yes right now it’s all consuming because you’re an unwanted outsider but our relationship will change as we learn to live with each other…. Perhaps I will write a letter with a different tone one day in the future.
Your ever suffering host…