Chronic Illness | Finding My Sunshine

Living with a chronic illness is a lonely thing.

Because you are constantly unwell, you are socially isolated. Especially when you have an illness that no one has heard of. And because you don’t have that magic hospital bracelet on, people forget you are still unwell. I forget I am still unwell. “Get over it already!” I feel like screaming when those familiar pangs of nausea start. Sheesh.

I try not to complain. I really do. Because there are so many people out there much worse off than I am. So many people out there who would give their right arm to be sitting at home with their family. I don’t feel I have the right to complain. I have a future ahead of me. Many people don’t.

But yesterday, as I was resting on the couch I noticed my bad tooth felt funny. My bad tooth has been a niggling annoyance for some years now, (thanks to an incompetent dentist who botched a root canal), accompanied by a permanent abscess that will apparently cost in the vicinity of fifteen grand to resolve. Despite the small fortune we fork out for private health insurance, it is never actually seems to cover anything, to the point where I seriously considered a life a la Breaking Bad.

Anyway. I looked in the mirror and was horrified to see that part of my tooth had fallen off. IT WAS GONE. I hadn’t even felt it move. WHAT THE HELL WAS GOING ON?! ‘t felt like one of those nightmares you have when all your teeth fall out – except it was actually happening. Shit just got real.

And then I broke. I’ve been through surgery, opioid, benzo and SSRI drug withdrawal, unmentionable physical examinations, countless medical procedures, electro convulsive therapy for Christ’s sake. But it was the tooth that broke me. I cried and cried, partly over the fear of treatment since, quite frankly, I would rather harvest my organs than go to the dentist. Partly through fear of the cost. And partly through the fear that I would end up looking like a hobo.

I cried in a pathetic heap. Telling The Hubster that “I just couldn’t do this anymore.” I’d had a gut full. Enough was enough. Then, at the least opportune moment, The Hubster received a work phone call and disappeared to fix some IT thing. So that was kind of awkward.

While he was gone I tried to pull myself together. I got out my iPad and started looking up pictures of baboons. Because that always makes me laugh.

Moving on.

I eventually stopped crying. Repeated my mantra of “it could always be worse”. I fantasised on packing my family in the car and just driving off somewhere. Anywhere. Then my escape plans were thwarted by remembering that we live in the most isolated city on earth. And also I can’t run away from my tooth. Or my illness.

Then The Hubster came back and told me how I was reacting was “normal” (if there is such a thing). That it is better to let my feelings out than to hold them inside. Depression is often described as anger directed inwards. I had been feeling so unjustified in “complaining”, that I had been, unknowingly, keeping it all locked inside.

So here I am. Another day, another challenge. I live day to day. Sometimes hour to hour, or minute to minute. I count my blessings, and thank the universe for the people in my life who DO understand. There is only one way forward, and that IS forward. But most importantly, I give myself permission to cry. To grieve. To get angry everything that has happened. To curse my diagnosis. And my experiences.

And that goddamn tooth.

And they really are.

Some days I wake up, refreshed, positive, ready to attack the world. I clean and cook and…hell…even look at the work I have done such far on my PhD.

Then there are days like today.

I’m sore. My stomach hurts. I have gastrointestinal cramping. I’ve got dreadful sciatica down the back of my right leg after an attempt at weeding. My hands and feet have swollen up like balloons – an edema allegedly caused by one of my medications. I can taste blood in my mouth. I notice, more than other days, my hair falling out for no other reason other than how unhealthy I am. My skin is patchy, bruised and refuses to heal. I wear track pants because I still can’t bear the feel of anything around my waist. I’m dog tired, and have set up Master D in front of Finding Nemo, because I just can’t face any noise. And what gets me the most is that I am stuck at home, feeling like crap, while everyone else seems to be out there getting on with their lives and doing SOMETHING. Anything!

But….and this is a big BUT….I am home. With my family. In my own bed. I’m not psychotic or suicidal or even depressed. I have had visiting nurses for the past fortnight and they finished up today. A recent blood test showed my eosinophil count has gone down (still twice as much as normal, but better than four times the norm!). Things are, slowly, moving in the right direction. Touch wood.

I just need to learn to accept the bad days. There will be bad days. I can’t expect to spend nearly five months in hospital and then come home brand spanking new. It’s that dreadful period of convalescence, where you want independence and normality, but you are just not quite there yet.

Each day I try to count my blessings, because the reality is that while I am living my life someone else out there is fighting for theirs. I have a roof over my head and a wonderfully supportive network of family and friends. My body and mind are healing, even if it is frustratingly slowly. And I do have a future. A future outside of a psychiatric facility – which is more than I can say for some of the other patients in there.

Today is a hard day, but maybe tomorrow will be better.