So, today, on Rare Disease Day, I'd like to take the opportunity to share some quick things that millennials (ugh) living through their teens and twenties with chronic illnesses will know. I hope that this will serve to help people be more understanding and aware of what they can do to support their friends and loved ones who fight every day for their health.
My dog has a face only a mother could love, she incessantly drools, snores loudly and smells (so I've been told). Due to Parkinson's I have no sense of smell, so it doesn't bother me! We have become inseparable and together 24/7 for over eight years; family and friends now know and accept, "Love me, love my dog"!
Three chronic illnesses that left me bed bound, feeling more ill than I had ever done in my life, and more and more depressed (which certainly didn't help the situation). I spent hours trawling the internet and asking people online how they were able to live 'normal' lives. That's all I wanted. I had had to give up jobs that I loved...
My worst nightmare is becoming a burden to my family, which I'm sure is in the back of many people's minds. No one wants to put loved ones through such difficulties and heartbreak. Why is it the people we love the most seem to be the ones who end up suffering? I am painfully aware my family, despite their smiles and good humour, encounter strains and difficulties due to my ill health.
When people ask me "How are you?" I have to think twice, not because I don't know, but often am not sure what they want to hear. Some ask out of common courtesy, simply being polite, but would rather I answer "I'm fine thank you" than hear a long account; perish the thought of hearing the truth and understanding the full picture of living with chronic disease.
For the last ten years the structure of my day has been dictated by my busy bowels. I've always had a speedy metabolism, but these days my innards conduct themselves like an Olympic bobsleigh team. My daily schedule is controlled by my petulant paunch, and it's become necessary to assess every journey/task and appoint a risk factor.
As Parkinson's (or any serious illness) progresses, it's easy to lose one's self confidence. When I was first diagnosed I immediately came across several people who had been living with Parkinson's for some years and therefore had already experienced many of the stages and symptoms that occur as the disease advances.
One Sunday one of our merry band was having his regular bedside Mass with his priest and his Mum, when the priest asked us all to join with them. When we all refused the way the priest replied to us has stuck with me throughout my life. "Well if you don't believe then you deserve to be sick. God is punishing you all for your lack of faith".
Patients who suffer any chronic, degenerative condition, should be seen on a regular basis by the same doctor, thus ensuring an on-going picture whereby the best care can be given. I think it must be incredibly difficult to continually show compassion towards a patient, whilst for self preservation keep a certain distance not allowing emotions to engulf and cloud the issue.
Sadly many spouses or partners faced suddenly with the realisation that their loved one has been diagnosed with Parkinson's, bolt for the door. Unfortunately statistics show that women are more likely to stick around due to our maternal nurturing instincts. Sorry guys, no disrespect meant to the male population, this is simply fact.
"EDS is considered a rare disease...and it is incredibly discouraging when no one has ever heard of it, when you have to spell it for your doctor and watch him Google it to find out how to treat you, when no one you know has it, and you are forever the weird one. It makes for a very challenging, lonely journey."
So although like most people, I have a "bucket list" I decided being optimistic at heart, I would need to call my wish list something else that was more appropriate, and so I have a "Pink List". Why a "Pink List" you may well ask? Well if you are sitting comfortably then I'll tell you why pink became significant to me.
There are many simple ideas and tips that I have picked up along the way from fellow sufferers, or have discovered by trial and error at home, and I'd like to share some of these with you. Anything that can improve your quality of life and maintain your independence to some degree has to be a good thing.
A person suffering from a chronic disease or some form of disability, needs intimacy with their spouse or partner as much as anyone else. Being intimate brings a closeness to a couple and is a necessary part of a healthy relationship. Many patients, too embarrassed to talk about these matters, can end up suffering from a lack of affection and tenderness which is essential to us all.
Only disabled and chronically ill persons along with their families, know and understand first hand, how difficult life can be. Financial burden is an issue not often mentioned, since no one wants to admit openly the hardship that frequently goes hand in hand when a person is unable to work due to health reasons.
Knowing when to offer help, lending a hand, and realising when to step back and allow a disabled person the dignity of managing by themselves is a fine line and not easy to judge. It is also difficult for the sufferer, as I'm a classic case of someone who hates asking for help, but in my present condition, many times I cannot perform a task, which is frustrating beyond belief.