24 Jan 2014

Sucked into the black hole of a rare disease

It's fair to say that my life has changed completely in the last year and a half.
Not just my day to day life, but also my hopes and my expectations of how life would be once my children left home - if they ever do.

I am blessed with not one, but three rare diseases, Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia and an extremely rare eye condition called Punctate Inner Choroidopathy (PIC). 

I have endured constant pain, the inability to stand for long or to walk far, unrelenting fatigue and at times, like now, impaired vision with the added delight of having things floating in my eye that make me convinced insects are crawling near me.

I have cried and grieved and complained and felt sorry for myself. I have often contemplated whether it is worth continuing.  Sometimes it seems like the only point to staying alive is so that my children are not left with the burden of my no longer being here. I yearn to run away from myself.

But that's all on the inside, as invisible to onlookers as the illness itself. I have almost become four people. The one people can see, the one I am inside, the one that has accepted my limitations and tries to work with them and the destructive and overpowering me that will push forwards with my dreams, whatever the cost to my health. 

On the outside, I am the plucky trier, bravely battling on within my limits, finding ways to get things done, finding help and treatments. Helping others affected as best I can and continuing and expanding my special needs website.

Aren't I amazing? And I look so good considering everything! This is what I am told - I'm never sure if it's meant truthfully or if it's just to gee me up. Whichever, the words are full of good intentions and I am grateful for them.

But the daily irritations take their toll. The uncontrollable perspiration when I drink or eat something hot. Not every time; it likes to surprise me. The fatigue that creeps up like a car slowing to a halt as it runs out of petrol, while knowing I still have to get in the car to collect the boys from their school, five miles away.

And then there is my constant companion, the pain. 

The pain is multi-faceted. There is the all over body pain that begins to buzz, quietly at first when the Tramadol runs out if I have forgotten to take it, then quickly building into pulsing through my calves, my thighs, arms, fingernails. There is the joint pain, controlled by a different drug but when it has kicked in, it's hard to even pick up a cup of tea. Then there is the gastrointestinal pain of stretchy insides and now a new pain, a labral tear in my hip that is likely to need surgery. No drugs work on this pain.

Plucky me has joined Facebook groups, forums, charities because knowledge is power and helping others helps me feel less like an empty space.

But the worst pain is on the inside. The pain of feeling that I am letting people down. That I forget things I am supposed to do because of the medications; that I cannot do enough around the house and that falls on others; that I need to sleep when I should be being useful. That my husband spends the weekend after a hard work-week running around after the boys and fetching me cups of tea.

The emotional pain of wanting things to happen that are never likely to be possible. Relationships have changed forever. I have changed forever. 

But the me I cannot quiet is the one that still comes up with creative work ideas and plans that I really want to do, if only I had the energy. I push myself to make things happen at the cost of exhaustion because I am not ready to accept defeat. I am not willing to accept the truth of my new reality. I am not sure I ever will. This me is my downfall. 

She's the one that wants everything with no limits. The one with dreams who wants to be living and laughing. The one that wants to go places and meet people and have fun.  The one who wants to love and be loved passionately, absolutely, energetically. The one with hopes and ambitions.

I can't shut her up. I can't cram her into a box and sit on the lid until she suffocates. Her spirit is too strong, her heart beats too loudly but she is trapped in a body that will not comply; the body that has never complied if I am honest. The one that always got me so far before it collapsed from exhaustion while my brain failed to shut down too.

I am no closer to peace than I ever was. I am very good at what I do and I don't want to give it up despite doctors, friends, family telling me I must so I can cope.

But I can't. I want it all. I always will. So I will live with the grief because the truth and acceptance doesn't fit. It never will.

So if you love me, you'll just have to love me for who I am and the way I am. Flawed, sometimes flaky but maybe worth caring about. Maybe.

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Image: Tania Tirraoro. 
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