One of the biggest downfalls of having chronic illness is that no one is really interested in how you actually are. The phrase ‘I’m fine’ is incredibly overused. So, I wanted to share the chronic illness code for ‘I’m fine’ and a few others that we would say, but actually tell you what that means.
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 my hands and ankles. This is when when joints can dislocate and hyper extend easily.
I’ve had chronic illness and pain since 2009. 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 can’t remember of a time when I have been pain free in the last 8 years at least.. 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. Just let that sink in.
The most frustrating thing about my condition is that it’s completely INVISIBLE. There is nothing to see, no bruising, no swelling of joints in my case, no identifying marks on the skin. Yet my body is wracked with pain daily. It also varies day by day which doesn’t help at all. In my case it’s generally at it’s worst in the winter.
I’ve also written about ways I can use heat to help with pain levels and trying to stay warm here as it’s just not possible to have your heating on 24hrs a day!
So, I wanted to share the chronic illness code for ‘I’m fine’ and some others but actually explain what we mean, to help you gauge how we feel on a particular day.
Now it may be hard to believe that someone can be in pain all 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 acute pain. That’s pain that will be there until that body part has healed itself. It’s 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 even smiling and chatting. C’mon if you are in pain would you even be doing that?
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 that 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, see anyone, or do anything.
Once you have a chronic condition like that, after a while when anyone asks how you are, they aren’t fully listening or really wanting to know. This is simply because most of the time they don’t understand it. They can think you are exaggerating or even lying about the severity of the condition. What doesn’t help is that there are still medical professionals who believe that our ongoing symptoms are all in our heads. But that’s a whole other blog post.
As time goes on I can tell you, that you’ll 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. 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’re generally being polite. I can tell you most spoonies will answer ‘I’m fine’ and the conversation will quickly move on to what they’ve been up to.
So, I thought I would do a quick chronic illness code for ‘I’m fine’ and others, you know just for the laughs!
This will be the most common term you will hear. It’s the general term for I feel like death but I still have a pulse 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 and 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!
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 nauseous, have a migraine, cannot even swallow food or even fecking blink. 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!
I could list a few more but I think you can get the gist of it from these few I’ve described.
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 code phrases and REMEMBER what they actually mean. It could make all the difference to their day.
I can absolutely tell you that if you look closely enough you will probably notice that the smile we’ve plastered on our faces is not even remotely reaching our eyes. Look closely next time.