Dear fibromyalgia, Right Now I hate You

My letter to Fibromyalgia

Dear fibromyalgia, right now I hate you! You are a thief and an impostor. You practice deception by your very description… ‘widespread pain and fatigue’, when really you are so much more than that; too much to mention.

You are not a life threatening illness (I’m thankful for that at least), nor do you manifest with obvious distinct symptoms. You are a thousand vague symptoms, some seem too trivial to mention but all of these little traits you have plague my life every single day to some degree.

Not only are the general public, including some friends and family, ignorant or misinformed as to your true nature, but so are most of the medical profession. You are written off as irrelevant or insignificant or even fabricated. How I wish that was true… I wish that you did not exist or that your effects really were ‘minor’ or ‘negligible’. You’re a master of disguise, hiding from blood tests, scans, urine samples and even physical examination. You’re there all the time yet not there for anyone else to see, I see you every day.

You crept up on me slowly then erupted like a volcano until I was forced to stop and take notice. Your efforts to be recognised are almost admirable.

You have taken my memory, my cognitive function…. ‘fibro fog’ another vague term. In reality it means that my vocabulary is now that of a 12 year old most days, (I used a thesaurus for this by the way). Trying to articulate my thoughts is a battle that I usually end up losing. I can no longer multitask at all and if I’m interrupted then whatever I was trying to do is then a lost cause.

It’s almost impossible to think clearly anymore and to get anything done (such as this letter) I have to be ‘in the zone’ and it’s draining. It’s actually taken me over three days to complete this, stopping and starting… Either the pen is too heavy, my fingers are too stiff or my mind just won’t cooperate. I get tongue twisted trying to form sentence and reading simple words out loud has become a real effort and it’s embarrassing.

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What else have you stolen from me?….. The list is endless so I’ll have to summarize….My energy: You leave me with a paltry supply, and that is on a good day. On a bad day it will take me 4-5 hours just to gear myself up to have a shower. It will take every ounce of strength I’ve got to move around and do basic tasks that I wouldn’t have given a second thought a year ago.

It isn’t the same as being ‘tired’. It’s like every movement is like trying to move through quicksand and every thought or piece of information takes an age to process. I’m also clumsy beyond measure now, whether it’s walking into door frames, dropping things or misjudging distance etc.

My youth: Well kind of, 36 isn’t exactly young but it certainly isn’t old either. I can no longer go out and spend time with friends and family and even my kids how I would like to.

I’m sure you’ve aged me by about ten years in the past year, and that’s only on a superficial, cosmetic level; my hair is so much thinner and falls out regularly, my nails are now brittle and covered with ridges, my skin has multiple blotches or rashes that were never there before you arrived. Physically my body feels like it’s about 75 years old most days. I ache and my joints crack and pop all the time, I no longer have the strength to open bottles or jars anymore.

So far I’ve managed to hold down my part time job but you’re making that more difficult by the day. I’m on my feet the whole time and it’s hell on my feet and back. I’m not going to let you take it away easily though, I can be determined too you know.

My stability:

In life…. I don’t know if you will relent a little some day soon and I’ll start to feel stronger, or will your determination prove unrelenting and I’ll decline even more? There’s so much uncertainty with you. Stability in my relationships…. My emotions can get the better of me sometimes and I can push people away or take out my frustration on them. Some people don’t understand you at all, because you’re invisible I guess, that puts strains on those relationships because I feel like I’m constantly having to prove you exist and explain the effect you have on me. I feel like a phony or neurotic sometimes.

You have taken away my strength…. I was once strong and now I feel weak as a kitten, mostly on a physical level but some days my resolve is low and I don’t have any fight left in me. However other days I feel like sticking two fingers up and telling you where to go. I don’t know if this is the ‘correct’ attitude to have, maybe I should learn to make friends with you (seeing as you’re probably going to be a permanent part of me), try to understand you more and make peace with you. Maybe one day but right now that’s difficult to imagine.

You make me so God damn uncomfortable! No matter what position I try to get in to I can hardly ever find comfort anymore (resting my head on Steve’s lap in one of the few places). Sitting is uncomfortable and standing up or moving around gets painful after a short time. My feet will throb and burn, my legs pull and stretch and my back is agony, so much so that I’ve been convinced I’ve started my period multiple times as the pain can be similar. Discomfort has become the new norm.

I get muscle spasms in various places. This has affected my swallowing reflex, given me twitches in my eyelids, hands that spasm when I’m driving etc., even affecting my bladder, causing a sudden need to pee even if I’ve just been. The latest consequence of these spasms is an irritated nerve. Apparently the muscle (in my neck) contracts around the nerve and causes inflammation, this has given me a numb thumb and forearm and caused a lot of pain in my shoulder and arm…

It’s also severely restricted how I can sit or lay down. If I happen to move my arm a certain way it begins to ‘fill with wet sand’ or ‘heavy spiders’… As I describe it, it’s amazing the weird ways you come up with to try and describe pain…..Burning, cramping, pulling, tightening, tender, heavy, aching, gnawing, stiff, weak, stabbing, electric shocks, needles being thrown at me…. To name just a few.

Yes your ‘primary symptoms’ are pain and fatigue. That is bad enough to be honest, but you also bring along so many of your close acquaintances (symptoms or conditions that commonly occur alongside but aren’t necessarily a symptom of fibromyalgia) they are a result of your interference however….

Postural hypotension:

I’m told by Dr’s that it’s normal to feel dizzy when standing up too fast. Well thank you genius, guess what? I’m not a moron and already realize this. What is not normal is being on the verge of passing out up to 12 times a day. I’d get up as normal then my head would start to spin, my vision would blur and I’d get that sensation as if I was on a fairground ride. Just when I’d think ‘I’m going!’ it would right itself but would often leave me feeling wobbly and dizzy. But it’s OK because this is ‘normal’!!

IBS:

Apparently it’s quite common to suffer from this along side yourself. I’ve learned to live with it but struggle with the nausea. If I have a flare up of the IBS I just take my anti spasm pills and anti sickness so it’s ‘okay’ (rattle rattle).

Multiple sensitivities:

My skin has become sensitive when it wasn’t before. Especially sensitive to sunlight and heat (absolutely no sunbathing done this year). I now have a permanent rash pattern in my arms and chest, which gets worse in the heat. If I shave my legs it’s inevitable that I end up with dry skin and rash marks from the razor. I’ve never used so much hand cream in my life and I’m lucky that my fiancé applies cream to my feet and legs almost daily. Too much noise will confuse and irritate me to the point where I can’t think at all.

Anxiety and depression:

I’m already experienced with these buddies of yours. Again I’ve learnt to live with them and keep them medicated. They already put restrictions on my life and I’ll have to be extra vigilant now.

There’s an endless list of other coexisting conditions, some I have some I don’t, not yet anyway. I have read that it’s more the rule rather than the exception that I’ll end up suffering with more.

Some people believe that you’re not ‘real’ that you’re ‘all in my head’ because they’re ignorant or misinformed. Well I have this to tell them…. I have been dealing with ‘stuff in my head’ for most of my life. I know what it’s like to suffer from real physical symptoms brought on through anxiety. This is not the same… I could not cause myself to have a massive drop in blood pressure every time I stand up, neither could I voluntarily make my muscles spasm. I haven’t got a blotchy red patterned rash on my arms because of anxiety and I don’t feel deep pain running through the bones in my legs because I’m depressed and It’s insulting to suggest this.

Right now I am filled with frustration, fear, guilt, self pity and uncertainty, however I will adapt and make necessary changes to improve my quality of life. I don’t know what lies ahead, hell I don’t know how I’ll be feeling a couple of hours from now, but I know that I am just as determined and stubborn as you are and I WILL find ways of keeping you at arms length. You do not define me or who I am, yes right now it’s all consuming because you’re an unwelcome stranger but as we learn to live with each other our relationship will change…. Hopefully one day in the future I can write a letter with a different tone.

Your ever suffering host…

Janine little.

Janine’s Boyfriend Steve Hodge Shares this letter with us. He is also the Member of Our support group. For support and Discussion join the group “Living with Fibromyalgia and Chronic Illness”