Wednesday, 19 November 2014


Dear Healthy Person,
Congratulations. You are worth 16 of me.
You can go to work eight hours a day, five days a week.
I can work half an hour a day. In three, ten minute bursts.

You sleep eight hours and wake refreshed.
I need to sleep ten to twelve hours.

You can go out for dinner, on to a concert, and back to someone's place after for nightcaps.
I can meet a friend for a quick coffee.

If you do more, push yourself to your limits, you get tired. You need an early night, or an afternoon nap to recover.
If I push myself, my body shuts down and refuses to move. My mind shuts down and refuses to think. I need a week of early nights and afternoon naps to recover.

Back when I was you, Healthy Person, I used to think tired meant a lie-in on a Sunday morning, after a busy week at work, and a hectic Saturday shopping and cheering the kids' on at weekend sports.  It meant a cup of tea, feet up and a snooze on the sofa at 4 o'clock, after a long weekend entertaining.  It meant feeling like the wheels are falling off because the baby was up again at 11pm, and 2am, and 4am, and you haven't had an unbroken night's sleep since she started teething. It meant aching joints after a day gardening, or cycling, or mountaineering, that a long soak in a hot bath and a good sleep would soon cure.

Now I am a different me. A me with a chronic auto-immune and pain condition, that can't be cured, and can barely be managed.  Part of the package is fatigue. And thanks to fatigue, I am a sixteenth of me.

This is what tired means now: getting out of bed and getting dressed; or having a shower and washing my hair; or reading for ten minutes; or emptying the dishwasher and putting the dishes away; or making coffee and breakfast. Four years ago I did all these things between getting up and going to work, as well as walking the dog, putting the rubbish out, making my lunch and putting a load of laundry on. In an hour and a half, I could achieve more, with no weariness, than I can now in a day and a half.

Fatigue doesn't mean I can't do anything.
But everything has to have downtime allocated. My day has to be measured out into short bursts of activity followed by long periods of rest or sleep.
If I have a shower in the morning, I rest an hour before doing the dishwasher.
If I spend an afternoon with my grandkids, I rest three days before meeting my best mate for coffee.
If I have a deadline for writing a short article, I start work on it at least a week before.
If I don't rest, my body does it for me. It collapses.

Sometimes I forget.  I wake up in the morning and I feel fresh, energetic. I jump out of bed, grab my clothes, head for the shower. I sing in the shower and plan my day; all the household tasks I need to catch up on. An afternoon at the park with the grandkids. Make dinner for friends. By the time I'm drying myself, I am so tired I barely know which way round my knickers go. 

This is the reality for people with chronic illnesses.
We are one-sixteenth of healthy people.
One sixteenth of the people we used to be.
One-sixteenth of the people we want to be.

So congratulations, dear healthy person. 
I'd hug you, but I don't have the energy.


  1. To be honest, the text above can only be compared with people with TN2.
    Myself got TN1, I only have outbreak 3-4 times a year while the pain is lasting a little more than a week or so each time.
    But besides that the description in the text above fits very good. When I have my outbreak I can't sleep, chew nor take a shower, I can't even go outside because even the wind hurts like a motherf**ker!

  2. I have the fatigue, swelling, redness, and I can tell time by my Neurotin dosage. If I miss it, my cheek swells and turns red. Then there is the itch, the burn, and the bee sting sensation of pain. Oh, did I mention the meds make me forget EVERYTHING? I even forget to take my meds! It is a vicious cycle. The person above is lucky they at least they find themselves bathing everyday. For me....It just seems to much to do much sometimes, so just to get out of the previous day's jammies is work! Depression goes along with this horrible illness. Nobody seems to understand. Nobody understands the pain, forgetfulness, the disabilities, the moodiness that the meds cause, the pain the cold and other sensations bring, and I feel so very alone. Forgotten. Nobody understands... This isn't who I use to be.

  3. This sounds like me. I am surprised to find someone with the same problems I have.

  4. Love your blog! Describes me!

  5. Hi, I have TN2, with bouts of TN1. My first flare lasted 2+ years 24/7. I thought I was completely cured in August of 2014, with no incidence. 7 days ago without warning it returned with a vengeance. I have significant exhaustion and fatigue that I do not remember having before. Does anyone else suffer from this?

  6. I am so easily exhausted these days. I blame the huge amount of meds I take for being so tired all of the time. I can fall asleep (or wish I were asleep) all day long. If I don't take these meds, I have those nasty, unpredictable, life changing bouts of pain only those who have had them understand.

  7. I am new to this. I think now all my symptoms are related to tn. It is nice to know other people have the same problems.


Thank you for your comments.