Wednesday 6 September 2017

LIFESTYLE: Living with Chronic Illness

This post is a little out of my comfort zone, its pretty personal and shows a very vulnerable part of myself I prefer to keep hidden away under lock and key.

I have since 2013 been living with a hidden chronic illness, this means I know its there and I'm in constant debilitating pain almost every hour of every day, yet no one else can see it. I look like everyone else and unless you took a look at my medication or my medical records you would think I was perfectly healthy. I find I am constantly judged by everyone, this can span from friends, strangers to professionals. 

I am in a constant state of defence, having to prove myself and my disability, for heavens forbid i have a good day where i can walk unaided, or get into a bath safely, or take less than two hours to get up dressed and ready to leave the house without the help of y 4 year old daughter.

I don't look ill or disabled every single day. Some days in fact I actually look normal on the outside (whatever normal is?). 
However on the inside I feel like I'm being consumed by the pain, breathing, eating, sleeping and moving all makes me want to scream at the top of my lungs.... however I'm sure if I actually did that it would be frowned upon so I put on my best fake smile which is the front for a painful grimiest. 
I get strange looks when I use my walking stick or crutches - I'm too young to be needing a hand with walking right?  Should have seen strangers faces when I had to use my Zimmer frame and the supermarket mobility motorised scooter. 

Everyday when i wake up is a complete surprise for me .... what have I been dealt with today? 

Some days my pain is so low I can function, be a human and a mother and wife... the down side to this ? Well you see I get over excited and do far to much, more than my body can take. So when I awake the next day, my body is against me, I cant move I can't turn in bed or reach for a drink. I can't get to my pain medication, I'm in a limbo of tears and fear. I suffer with memory problems, known as fibro fog this in its self can mean i miss important dates, appointments and scheduled items. Everything in my life has to be written down or there is a chance i may miss it.

I say yes to spending time with friends then when it get to the day I'm too tired, in too much pain to even contemplate leaving my house, sofa or bed, and i cancel AGAIN! 

What people don't see is the constant tears, struggling to wash myself and my hair. Reaching down to put on my underwear and socks (my 4yo daughter does this for me, thankfully she loves to help), it's humiliating. 

What's worse is when I'm in public using my stick, crutches or blue badge and I get remarks generally in the region of 40+, these remarks bring on my anxiety. 

You far to young use use a stick ..

Excuse me your parked in a space for people who are disabled and your too young to need it. Stop being so lazy. 

Your using your stick with ease are you sure you really need it?

Some days I don't use my stick, the result ... I fall a lot, the pain is more unbearable than normal (what ever the bloody hell normal is)!

I spent far more time in hospital than i have ever wanted t.

My illness is hidden, much like my worse days. On my worse days I can barely make it to the toilet, dressing myself is out of the question. I worry what my daughter must be thinking seeing her mother like this, to her and in her eyes i am meant to be indestructible and super hero like. 

I have spinal nerve damage (this is a result of being left too long to be operated on), i have damage to my L4, L5, S1 discs, there were severely herniated and i have had surgery to try and ease the issue, however this was not as successful as we would have hoped and i am left with permanent long term damage. I have Fibromyalgia, something i had never heard of untill i was diagnosed with it in 2014. 
I now have new health concerns, leading to a number of tests for to see what's going on with my poor excuse for a body.  

Remember your not alone, even though sometimes you have never felt more alone. 
Let the tears run down your cheek, the washing and house work can wait till another day. You need to put your self first for once, and this is something I'm learning slowly to do. 

Love aimee. 


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