I've been blogging on my own website over the last four years, about my personal experience of living with chronic disease, in particular Gaucher and Parkinson's (both of which I suffer from - lucky me!). I don't do anything by halves, and born with gaucher disease a rare genetic disorder, I was further diagnosed at the age of 44 with Young Onset Parkinson's.
I am not a doctor, but merely a patient with a lot of experience and a desire to share information offering support to others in similar circumstances. I write about every aspect of living with an on-going long term illness. No subject is taboo or off limits. When suffering from a rare disease most have not heard of, in addition to the indignities of a degenerative disease such as Parkinson's, one is not afforded the luxury of privacy or dignity. Suddenly I found the floor was open to all discussion, as seeking advice and help become much more important than wrapping up one's troubles in a soft blanket of denial.
Over 70 countries follow my blog, and although I'm not privy to information as to who individual readers are, I can see many go back through the archives and there appears to be one specific blog entry that is looked at more than any other. It begs the question; is it the title "Not Tonight Josephine" that intrigues so many, or is it the subject matter which badly needs further discussion, but most are too embarrassed to speak about? I'll let you be the judge of this question.
Upon Napoleon declining sex with Empress Josephine, the phrase was coined "Not tonight Josephine"! Which Poor Napoleon probably never said, but this would spoil the story, and as it became a well-known phrase let's stick to the notion that Napoleon did speak these words to his beloved. Now you may be wondering what have Napoleon and Josephine got to do with chronic ill health! Don't worry I'm getting to the point, but if you think this article is about to get salacious, please stop reading for I fear you will be very disappointed.
A serious issue, often not aired for fear of shame and humiliation, I decided to throw caution to the wind and write about this important sensitive matter which affects many chronically ill patients along with their partners. Intimacy with one's spouse/partner is an important part of any relationship. Even though one's enthusiasm may decline due to strong medications, extreme fatigue, pain, and all the complications involved with suffering any severe long term disease; making the effort to show affection remains essential. A relationship needs sustenance in the form of closeness, tenderness and understanding each other's needs, despite the difficulties of the situation. You may no longer be the young energetic person you once were, but all is not lost. With a little effort and imagination, adapting to new circumstances, even a simple hug, holding hands, snuggling up close on the settee, or a lingering kiss; some form of affection and intimacy can and should be made.
Our lives are so hectic in today's modern world, many people find it hard to simply 'be in the moment' to relax and chill out. Anyone suffering Parkinson's will no doubt be well aware how stress and anxiety exacerbate the disease at an alarming speed. Making time for a little romance and intimacy is just as important for those who live with on-going chronic illness. Apart from being a natural and healthy part of any relationship, physical intimacy releases certain 'feel good' chemicals, one of which is the all-important dopamine that Parkinson's patients are so badly in need of, which can have positive mood changing effects. With a little intimacy one's mood and emotions improve, feeling positive and content, can help induce a good night's sleep, or so they say, and much more fun than a glass of warm milk. So purely for medicinal purposes, make tonight the night, and let that dopamine run riot!
If like Napoleon, it's "not tonight!" relax, take a breath and enjoy a touch of British humour, that I'm sure will make you laugh. Victoria Wood's wonderful rendition of "Let's Do It" always brings a smile to my face.