“Don’t judge a disability by its visibility”
I have been struggling a bit the last few weeks; adjusting to new meds; haven’t had the energy or brain power to think about writing; insomnia and/or poor broken sleep is driving me mad and really effects how well you can cope. I also get very frustrated that I can’t do what I want to do when I want to do it; as it all depends on what version of the ‘pesky p’ I have each day / hour; as it’s effects can change frequently and suddenly.
“I want to sleep but I am battling with my muscles and my brain won’t stop talking to itself”
I have also taken the leap and attended a support group – gasp – I had put this off as partly I wanted to ignore it and carry on as normal and partly as I was afraid of seeing what the future holds. However, the group I attend is for young parkies and has been a real relief to be in the company of fellow parkies all at different stages of the illness and with varying symptoms; some with very physical/visible symptoms others less so. My partner has also found these meetings a real comfort; we feel we have a whole new group of friends who completely and truly understand; they are a great bunch full of humour, experiences and inspiration. I am looking forward to getting to know them all better – if it had not been for the ‘pesky p’ I wouldn’t have had the pleasure of meeting them.
It got me thinking about the term “disabled” and how this is portrayed and stereotyped; for a start the symbol used is a person sat in a wheelchair; I and the majority of the people at the group were not in a wheelchair; does this mean we are less ill/disabled? I find myself sometimes worrying about being judged as my physical symptoms are being managed quite well (most of the time) by medication but they are still there and the physical struggles I face are mainly only noticeable by me as let’s face it I can’t escape myself!! However, it is harder to manage the non-physical symptoms such as fatigue, sleepiness, brain fog, lack of concentration, constipation, mood swings, anxiety, depression, pain and discomfort etc…
This is where neurological and mental illnesses are not always seen as a disability – well we can walk and talk, work (when we can) and are often not in a wheelchair or using sticks – “you don’t look ill/disabled? Well you don’t look stupid…..looks can be deceiving” Mwahahaha
“Am I faking being ill or am I faking being well?”
Do you see me when I struggle to get up out of bed in a morning and stumble to the bathroom stooped over like a 90 yr old all stiff, aching and more tired than when I went to bed? Do you see me…
….when I struggle to pick up my 2 year old son?
….when I struggle to hold a toothbrush or brush my teeth or put my make up on?
….when I have musculoskeletal tension and pain leading to a headache that lasts for days?
….when my face/jaw freezes; is painful and I struggle to open my mouth/eat?
…..when I struggle to walk my 5 year old son to school; having to collapse on the sofa to rest/catch my breath when I get back?
….when every step or movement is thought about and planned consciously; continually having to be aware of my posture and movement? (non parkies do this subconsciously without a single thought)
…..when the fatigue and brain fog sets in and I can barely go through the motions of the day and just want to lock myself away and sleep?
…..when I cry silent tears for not wanting to worry, bother or be a burden?
I could go on …but I won’t as I am depressing myself! You get the idea.
Stand tall, stand proud and use the opportunity to educate and raise awareness of invisible disabilities.
Every single one of us has challenges and struggles in our lives whether health related or not; we all try and plough on regardless painting on a smile …. we need to remember it is ok not to be ok from time to time; in fact it is healthy and needed as without the bad times we wouldn’t appreciate the good. It only becomes an issue if “not being ok” becomes the norm; this is when it is crucial to reach out to a friend/family member/GP or enquire about a local support group (you may need to attend 2/3 before you find one that suits you) – you are not alone just sometimes you need to be pro-active to find the support you need.
Try and focus on your abilities not your disabilities; a good attitude is key; push yourself out of your comfort zone (attend that parky support group or sign up to that course you always fancied) the worst thing we can do is lock ourselves away. Reach out and you will find a source of comfort and strength. Though it may not feel like it at times (recently for me) we are lucky; we are alive, we have the chance to try and take back control and make the changes to our lives we have been putting off – we have a chronic illness not a terminal illness.