Tuesday, 31 March 2015

What a Fibro Flare feels like




I am often asked, "What does a flare feel like?"
There is no mistaking a fibro flare.

In short: Your first one is like being a shit creek survivor.



A detailed explanation: Even before my eyes opened this morning I knew today was the day. This is the fourth attempt I have made today document my feelings to share. So if my words seem a little scatty then do your best. It matters for me to make people aware of what fibro flare feels like as best I can so I waited till I was in a flare.


The alarm rings as usual; I always have a “press the snooze” period for extra snuggles with my youngest that now has squatter’s rights in my bed. Turning to grab him for a cuddle was my first discovery of the invisible beating I obtained during the night. I lay holding my little man like a huge teddy bear, his warm little body soothing the pain in my arms, but my wrists were too painful to move so I kept them rigidly in our embrace.

Have you ever broken a bone and had the cast/splint removed?
The first movement and the fear of your bone snapping, that is how this felt. Rather than my body being one free flowing unit all working together in harmony, my fibro makes it feel like separate departments now. This is not isolated to flare days, this is every day, but flare days are far worse.

Today my hands were not part of my arms and the joint that was between them felt like it had a knife inside and someone was scratching away at the bone from the inside.

My good days are regular people’s bad days. The period of diagnosis is so weakening, tiresome and painful that upon finding out what is wrong with you the memory of a normal good day is gone. Once you have sorted the best pain killers, the balance with sleep and juggling your daily spoons you have forgotten what the old version of a good day was and are simply content with feeling ok-ish.



But you do have pain-free days when you are not drained people ask?

No, I have days when I am running on your equivalent of empty but it is good enough for me to grab life by the balls.

Out of bed now and my feet are on the bedroom floor but I have not taken a step. There is pain and stiffness in my ankles so getting my feet from the pointed toe foetal position of my sleepy slumber to a ninety-degree angle to my body is a challenge. Legs and feet feel brittle and like old branches of trees about to snap. Still not taken a step as I have to think about this movement, walking was always something I just did, no thought process was needed. Do I go left first and then right or vice versa, what will be my strongest leg today?

“Fuck-fuck-Fuck-FUCK” words in my head as I am walking to the bathroom for my morning wee. Last night’s painkillers have worn off and I am feeling like every nerve has been shredded with a rusty knife. The invisible fibro demon comes and kicks the back of the knee and it gives way a little. Sporadic loss of strength in your legs, as you walk, gives you a slight waddle, it’s an odd feeling that makes the landing seem the length of an aircraft landing strip.

Sitting on the throne now but not feeling like a princess, “Smile Ness this is going to be a great day” I try to create my own positive self -fulfilling prophecy, I am always reminding myself with positivity but after that long exhausting journey I just want to go back to sleep.

No spoons today just exhausted.

A cup of tea will wake me up..slurp slurp

No, it failed; no amount of tea will shift fibro fog.

Tried to type on the computer, no chance I just stared at the screen dazed.

Fibro fog is deep today.

The term fibro fog refers to patients who have fibromyalgia that “exhibit central cognitive issues surrounding memory, concentration or thinking clearly.” This tells people sod all really so why books word it that way baffles me.

My fog is always there, like a migraine aura you are aware of its presence. The amount of times my family says jokingly “You are getting Alzheimer’s you!” shows that it is noticeable to others also. It is not like a drugged slur and an out of body feeling it has many attributes. My eyesight becomes impaired and my hearing so sensitive. Everyday noise hurts and seems like people are “in my face” even TV noise is painful. When I am overstimulated such as when there is a lot of noise, movement, or commotion at once all seems too much for me.

The fog makes me feel like I cannot connect the dots on my daily living, I do not flow anymore as I once did...my brain has a hard time processing simple things when the fog is thick.

My youngest thinks it is funny that one of my coping mechanisms is a memory book, just a normal textbook but I use it to make notes to myself so I remember. The funny part is I often forget where I put my memory book.

The fog is frustrating but not detrimental to my life. It is not a dangerous dizzy or a forgetfulness that would place you in danger or forget to collect the children from school. It just turns you into a bit of an airhead gobshite so I just laugh at myself. For me, the Fibro Fog is like having a brain full of marshmallow and my thoughts seem to have trouble finding their way through. This is especially problematic if my thoughts require me to perform some action (building Meccano is out for me now, all them screws would kill me!) , I just sit in a fuzzy warm daze and think about what I need to do rather than getting up and doing it. This is much worse if I don't get an adequate amount of sleep.

If I had to draw red circles on a diagram showing the places that I hurt I would simply draw a circle on the whole of me. My body aches like it has been beaten with a bat, even the hairs on my head hurt. Certain areas hurt more, like a relentless toothache throbbing.

A quote I remembered from my nursing days twenty years ago stayed with me and always maintained that ethos with my holistic therapies also. Assessment and treatment of pain are often complex. The standard definition of pain is “whatever the experiencing person says it is, existing whenever the experiencing person says it does” (McCaffery, 1968, p.95).

Why does Fibromyalgia always have to be challenged?
Why not accept it is what that person is telling you?

I am off work sick at the moment as it all got way too much for me, took a while to admit that to myself but I could see that I was exacerbating my illness and my flares were too close together, something had to give, it was my pride.

Strength is not doing everything alone; strength is saying you need help when you do.

Today I knew I just had to manage to get the little people to school and then I could go back to bed with a hot water bottle and sleep. I needed sleep, I was so tired. I felt like I had been awake for hours, days but it was only minutes. To wake and be exhausted is such a challenge. My heart goes out to insomniacs who never feel rested.

The boys are fed, washed, changed and pack lunches are done. We love our morning time before school. I have the best children in the world, they are so easy to love and care for. Walking home from school I could cry as it seems so long. It is not, I live 10 minutes’ walk but on a flare day, it becomes an eternity. Bed, at last, I closed my eyes and shut the world out as I lay motionless my body like a dead weight sandwiched in warmth it was bliss. Tramadol is not really having a great effect on today’s pain but so long as I am smiling by 3 pm I am grateful.

Today has been a tough day but I now listen to what my body requires today it was painkillers, heat and rest..and an Asda Pecan slice.

I could scream and cry and rant and swear but what is the point?

Wouldn't it be lovely to stay in bed all day being lazy, I always thought this but I am not being lazy and it is not a wasted day for me. I am doing EXACTLY what I need to do in order to recover from a fibro flare. I am trying my best to find a balance and create a greater gap between flares. Fibromyalgia is not psychosomatic and under my control.

While I may not be able to change the fact that I have Fibromyalgia, I can build a new life that is still rich and full – it’s just not the same as the old life.

We have to create a new normal for ourselves because we deserve it!

 Love and gentle hugs to you all

Find me also on

2 comments:

  1. I found your article on FB. Very informative. I myself have moderate brain damage from a horse accident and your days found Judy like mine. But we call it neuro fog and fatigue. Pain and fatigue is constant. Like you my good days are others bad days. Just found it interesting the similarities. Great read. Thank you

    ReplyDelete
  2. Hi Susan, I am so sorry I have only just noticed this comment and it is nearly two months old. So sad you had an accident, it scares me as my son is forever in the stables with his best friend and her horse but I can not stop his freedom and love for animals.
    There are so many similarities, I also have difficulty processing words like someone with a brain injury. Lovely to have you here and again sorry I never replied sooner Love and hugs Ness xxx

    ReplyDelete