The side to an illness that people will never see, or may just never attribute to the illness, that is the worst.
Some will know already of the loss of confidence through steroid weight gain, the loss of ability through organs and joints not playing properly and the loss of some ‘friends’ who couldn’t understand.
When will the proliferation of loss come to an end? I cannot lose much more, surely?
Even before diagnosis the seeds of damage were sown. The mysterious illness causing me problems at work; missing meetings, unable to perform to my usual standard or even to carry out my full role. At least one member of the upper management head office swans just thought I was lazy. Pffft showed her when I went in to hospital on Christmas Day didn’t I.
There we have the first casualty; my career.
Career becomes a job. A demanding, gruelling and punishing job. Living alone became impossible, hospital appointments, pain days and basic tasks.
Second casualty; my flat, my independence and proximity to my best friends and support network.
It’s this second loss that caused the most destruction. This was the atomic bomb of upheaval. This is the part I can never forgive. Not usually one for resentment, I can however make the odd exception.
I created my own life, my home, my sanctuary. I was independent and I know mum was happy I got out of the home town. Even retrospectively I know I had no real choice, that’s the real painful element; I lost my right to choose. The right choice doesn’t equate to an easy choice.
Seriously, to walk away from that whole Southampton package, well, that is just a loss that I perpetually struggle to bear.
I shall fast forward to today.
What is left to lose? Not much. Have lost my job recently at the worst moment possible. In turn meaning I have lost the ability to fund my lifestyle, to fund seeing my friends. I lost my ability to manage my own therapy. I lost my cash flow and the ability to pay back a loan.
People can and will make judgements. I really do not care anymore. I put my happiness and material enjoyment above the need to create a safety blanket of cash, above the need for a rainy day fund and yes above the need of any sense of rationality. I can list my reasons, it changes nothing. I have never been frugal, I have always enjoyed my money that I work for, albeit my previous salary was over double that of my last delightful period of torture.
I have also never been in this position and it is pretty bleak.
The other side of the coin of despair is that my illness, my health, my fight… has taken a turn, in fact a swift cliffeside nosedive.
I don’t mean that to sound like the reaper is stood in my room waiting to drag me off, he isn’t; I sent him for a tea break. It does however create much difficulty in securing employment, with the added delight of Christmas just a breath away (don’t even get me started).
I have appointments coming out of my useless failing ears. I have new appointments being added to the mix because my lungs are being plonkers and my eyes are starting to give up. Added to that, I am on day 5 of a virus and my jaw is starting to swell. My body is not equipped for this fight; like going in to combat against Isis or Putin with a set of plastic spoons.
Which leads me to my original question? What is left for the illness to take?
I have lost all of what makes me who I am. I have lost the ability to introduce logic and clarity to a horrendous situation. I am jobless, with spiralling debt and failing health. I am like a sad movie that only makes it to Netflix with a 2 star rating.
Honestly, I am not sure where to go from here. I haven’t intended to be bleak. I can’t be a burden to those I love, that’s partly why I started doing this. For the first time in my 21+ years I am at a distinctive loss. For the first time in a long while I miss his guidance that I could use more than anything.
Loss is relative, loss is painful and loss is personal. Loss can also be incredibly destructive.