I am the worlds worst when it comes to having a positive outlook on using my mobility aids.
It’s been a definite love/hate relationship for me. Even 12 years into my illness I still have that battle.
One of the main things for me personally is the fact my illness is completely invisible to anyone. There’s no plaster casts on my ‘broken joints’. There’s no bruising or swelling visible. I don’t walk with a limp or have a missing limb.
So, to anyone that meets me I look like anyone else. Until they clock that I use a walking stick.
So when I meet people, quite often for the first time, I will be greeted with the usual comment ‘ Oh what have you done?’. Meaning I must have hurt my leg in some spectacular fashion and that I’m now going to tell you the full hilarious story!
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.