No day is ever the same when living with chronic illness. The routine may be vaguely the same but each day revolves around adapting to what symptoms are presenting that day and the severity of them in the moment. What may be rather bad in the morning may be insignificant in comparison to another symptom by midday
A good example of this is today. Sundays are always our family rest days. We go to church, sometimes have family to us but generally speaking we are at home together. Now I was already shattered after a bad night sleep with nerve pain in lower right leg and lower back pain. However upon getting up my neck spasm started pulling my head down towards my shoulder. It’s a particularly nasty spasm that’s hard to break. I have a percriped Aspen collar for when my neck does which I alternate with wearing a TENS unit and a heat pack.
I’ve not had to wear this collar in a while. The overly nervous me did my best to disguise it with a scarf as we sent out for church. It deffinently took some getting used to wearing it out and about and learning to ignore the second glances once again. But it’s worth to help ease off the painful spasms somewhat.
My Botox appointment is extremely late this time round having being schedule for almost six months instead of three. Whilst I’m hoping for a cancilation to come up, I am in the mean time going to ask my general practitioner to allow me to my Trihexyphenidyl untill I’ve had my injections
The theme this year is ‘not all disabilities are visible’. This is stressing the fact that not every condition is immediately visible; according to the WHO report roughly two-thirds of people with a mental or neurological disorder will put off going to a doctor for help largely in part due to stigma, discrimination and neglect. As someone who has very much been on the receiving end of this trio when it comes to living with multiple neurological conditions, this comes as no surprise to me.
Looking at me as I am right now, curled up on the settee trying to not make to much noise so as to not wake the kids, you could be forgiven for not knowing I had a disability; even if your keen eyed and spotted my odd eyes you wouldn’t know that my sight was impacted and would be unlike to think too much about it. However even when you can spot my spasms or a dislocation, you cannot see my brain fog, my sensory loss, the neuropathic nerve pain, no one can see fatigue fight, the pain induced insomnia, the sixty odd dislocations a day and so much more.
I love talking with young children about my disabilities because they don’t hold back. “How does your chair work?” “Can you get upstairs?” “Do you have to put you your chair in the bath?” The look of fear on the parents faces as they worry that something not deemed politically correct may be asked is what I find disheartening. Without these beautiful minds being curious how can stigmas be fought against, broken down and normalised? This should be praised and encouraged. I appreciate that not everyone will want to be asked, but you’ll be surprised by how many people are more than happy to discuss these things.
Disabled people, whether the condition is visible or not, physical/mental/learning or otherwise are still people. Next time, pause, maybe ask a question, you could be amazed at how it opens your eyes.