Sunday 8 June 2014

Six months in Chronic Illness

(Sick person going to Lourdes, France to take in the water, source)

3 x GP appointment
2 x Neurologist appointment
1 x Cardiologist appointment
4 x Emergency Department visits
1 x Ambulance call
5 x Blood tests
1 x MRI Brain and Spine
1 x Ultrasound Abdominal
1 x Ultrasound Pelvic
1 x Evoked Potentials bilateral leg
1 x Electromyogram bilateral leg
1 x Nerve Conduction Study bilateral leg
1 x Wheelchair and mobility aids visit 

It's only when I start thinking about the last six months that I begin to realise just how much of that time has been spent in the medical system. It's not even a complete list, only what I can recall off the top of my head as I sit out in my backyard enjoying a few moments of Winter sun. And doesn't mention all the sundry medical interactions. For example all the pharmacy visits for my medications, which are too many to recall accurately. The stack of medication scripts that are stuffed in my big box of pills are a good indicator. The list of new scripts I will have to get from my neurologist on Tuesday an even better reminder. Every week when I fill my pill box there's always one or more meds that I have run out of that must be fetched from my local chemist.

If I had followed up all recommendations from my doctors, the list would be longer. But medical fatigue means that I have let things slide. There is only so much you can take. You have to have life outside of medicine and illness. And each interaction takes it's toll. I should have followed up on physiotherapy. I do need to follow up on my appointment for the autonomic gastroenterologist. But some days I am simply over it. Not necessarily the brightest of moves, but every now and then you have to simply forget it all and sit outside in the garden and smell the roses.

If I included all the times I probably should have gone to the GP or to the Emergency Department it would be longer. But you get used to riding out symptoms. You get used to minimising the day-to-day pain, fatigue and illness. You get used to living in a permanent state of  '000'. And, as the doctor at the ER doctor pointed out the other week, they are happy to help me when I am in acute pain or crisis, but there is nothing more than can do for me in my country town. They can slap on a bandaid, but the wound remains unaltered.

If I included the threats of admission that I have talked my way out of, it would be longer again.

No the pain's much better. 

I'll be fine at home.

Oooo look, I can speak now.

I could get an Oscar for my performance.

If I included the weeks of recovery required from each trip to the city. When I couldn't lift my head off the pillow. When I couldn't keep food down or stand up. Simply because I had to go to see a specialist or have a particular test, which can only be done in the city 3hrs away thanks to my complexity and rareness. Then the list would be longer.

Life is set out as follows:

Prepare for trip to hospital/medical clinic/specialist/test
Make it through appointment/travel to and from/emotional rollercoaster of bad news-no news 
Recover from trip to hospital/medical clinic/specialist/test

Prepare for next trip to doctor/medical clinic/specialist/test infinitum

The reality is that most of this isn't known outside of our immediate family. The reality is my life and other lives like it, are hidden from the wider world. Forgotten or simply unknown. It's not until you explain your situation to someone and see the horror on their face that you yourself realise how abnormal your life has become.

You collapsed twice at home?


But you didn't come in?

No. It happens pretty frequently.

So how do you normally manage the pain?

I just try and ride it out. It always decreases eventually. If I can't walk Mr Grumpy carries me. You learn to manage.

*look of horror and incredulity*

Anything becomes normal after a while.

The term Chronic Illness fails to capture the essence of life living with perpetual illness. Chronic means every day, day after day, week after week, month after month, year after year. It means the pain doesn't go away. It means it doesn't get better. It means that the fatigue and nausea and weakness and all the other symptoms are not going anywhere. It means that even on the good days, the underlying illness is still there and can raise it's head at any time. It means for me and many others that cure isn't an option. It means that management is key. It means no matter how many positive memes, ill advised medical advice or well meaning suggestions you throw at me, it won't fix my medical issues.

That list at the beginning of this post is me working my damnedest to get better, maintain my health and deal with the challenges my body throws my way. It combines with diet, exercise and meditation to try and keep me functioning. It is a full-time job. It's comparative shortness also indicates my need for balance. For maintaining some level of life and joy in the face of constant illness. When the choice is battling through medical red tape to access limited resources or lying out in my backyard looking up at the clouds, the choice isn't hard. Even if it isn't always medically responsible.

Sometimes I have more visits or less, depending on the state of my body. The type of interaction also changes as my symptoms and needs change. But overall this is pretty typical. A small glimpse into my life.

This is the reality of complex chronic illness. This is the reality of my last eight years. It is the reality for many other patients living this life. And my reality is a cakewalk compared to many others. But we get up and we do it again and again.

Let the next six months begin.


NB I had to remove the option for Anonymous comments as I was being overwhelmed with spam despite my best efforts.  

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $2,000, keep donating and hopefully we can reach $10,000.

1 comment:

  1. How people can be spamming your blog is beyond me.... I found this when I had self diagnosed with POTS (waiting for the docs to catch up, as usual ;) ) and I love everything about the way you write! Im constantly sending people links to your blog posts because you put everything so perfectly. So thank you! :)


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