Most of you will know by now I have ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome), Fibromyalgia ( widespread musculoskeletal pain) and more recently Joint Hypermobility ( in hands- when joints can dislocate!). I have had chronic illness and pain since 2009 and even with high levels of pain medications including morphine I still experience pain 24hrs a day, 7 days a week and 52 weeks of the year. In truth, I cannot remember certainly in the last 7 yrs or so of a time when I have been pain free. I read recently that the full list of symptoms of an ME or Fibro patient is the same as a patient with AIDS around 2 months before death! The most frustrating thing about my condition is that it is completely INVISIBLE. There is nothing to see, no bruising, no swelling of joints in my case, no identifying marks on the skin………….NOTHING. BUT MY BODY IS WRACKED WITH PAIN DAILY. So I thought I would share a code for what we say and what we actually mean to help you gauge how we feel on a particular day.
Now it may be hard to believe – how can someone be in pain all of the time even with very strong medications? A normal person’s brain is not equipped to understand chronic, consistent pain at all. Yes they can totally empathise if someone breaks their arm, or has the flu or even something like appendicitis because naturally our brains can understand what’s seen as danger or acute pain – pain that will be there until that body part has healed itself…………short term pain. They can imagine from past experiences how painful those things could be, but the normal brain is not equipped to understand a pain that does not go away! It’s just how we are made- and therein lies the problem.
Therefore, as you can imagine this can be the cause of all misunderstanding around consistent pain. People think it’s actually not possible to be in pain for that long or believe that it never goes away. They see us ‘spoonies’ up out of bed and dressed and dare I even say it, possibly even with make up on and possibly even smiling and chatting!!! I mean c’mon if you are in pain would you even be doing that?………………..ERM…………..actually yes sometimes you would! Not because the pain is reduced that day or any less severe, but more so if you didn’t make the effort ( and believe me you have no idea how much fecking effort that actually takes when you feel like death!) you would never leave the house or see anyone!
Then once you have a chronic condition like that when anyone asks how you are- they aren’t fully listening or really wanting to know simply because most of the time they don’t understand it, think you are exaggerating or even lying about the severity of the condition. As time goes, on I can tell you, that you definitely find out who your true friends actually are. Having to cancel going on a night out does not go down well once you’ve done it more than once. The invitations to go out or do anything start drying up because if the venue is somewhere where there’s dancing to be done no one wants to be the one stuck at a table keeping you company! If its a day out with a fair bit of walking your invitation gets ‘lost’ as no one wants to be lagging behind walking at your speed rather than be with the crowd. Believe me it happens………………………………I’VE BEEN THERE AND GOT THE T-SHIRT ON THAT ONE!
You learn very quickly that when people ask how you are they are generally being polite and I can tell you most spoonies will answer ‘I’m fine’ (which generally means I feel like death but with a pulse!) and the conversation will quickly move on to what they’ve been up to.
So, I thought I would do a quick reference to what we say and it’s translation to what we actually mean- you know just for the laughs!
Like I said above this is the general term for I feel like death but with a pulse- but I have made the effort to get up and dressed to either meet up or go somewhere.
I’m a bit tired!
I literally cannot hold my own body weight up, it feels twice it’s normal weight but I also feel as though I’m wearing a pair of lead boots walking through a swimming pool of treacle whilst someone is pressing down on my shoulders with their own full body weight!
I’m a bit sore!
Feck me I think I’ve just done 10 rounds with Mike Tyson then been thrown out of the ring to be run over by 2 double decker buses and then been set upon by a pack of feral wolves…………..DON’T FECKING EVEN TRY TO TOUCH ME (OR EVEN LOOK IN MY DIRECTION)!
I had a rough day!
ALL OF THE ABOVE…………but now I feel sick, have a migraine and cannot even swallow food or fecking blink……………so I’m unable to get out of bed, the blinds are closed, earplugs are in as noise sensitivity is through the roof. Just check me occasionally to make sure I’m still actually breathing!
So if you have a friend or a family member who has a chronic illness and suffers with chronic pain, then PLEASE recognise the above standard phrases and REMEMBER what they actually mean. It could make all the difference to our day. If you look closely enough you will probably notice that our smile we plaster on our face is not reaching our eyes…………..look closely next time.
HOW ARE YOU TODAY?