Living with persistent,chronic pain is never an elective lifestyle choice, nobody decides to welcome pain into their lives like you would welcome a old friend, instead pain is that relation nobody likes (or talks about) from a far off baron land who promises to visit just for a weekend but no matter how much you hint or try, once they arrive they never leave again.
Pain has always been a visitor in my life, having Endometriosis, I look back and realise that every month when my period came (even as a teenager) I had severe cramps and felt awful. I was however put on the contraceptive pill and stayed on it for about 12 years which masked the symptoms of my illness and kept pain at a manageable and what I thought 'normal' level.
Endometriosis effects 1 in 10 women in the UK, its the second most common female Gynaecological problem and can be confused with other conditions simply due to lack of awareness which ultimately means diagnosis times have been historically shockingly slow at an average 7 years.
The disease, for it is a disease (I have taken some years to be able to admit to myself that I am living with a disease), means that the Endometrium Cells that are found normally within the uterus walls migrate for some reason (that is not yet officially known to medical science) and implant within the pelvic cavity and/or other parts of the body. There is some discussion as to just how these renegade cells march their way to foreign soil , maybe they didn't leave when they were meant to (during a period) and did a runner up the Fallopian tubes , or maybe they are already laying dormant awaiting the hormones needed to grow and causes general havoc upon their unsuspecting host.
Whatever the cause, however helpful it would be to understand, it matters nothing to the 'here and now' of living with the symptoms of Endometriosis.
I was lucky, in my journey, as I have had children without Endometriosis effecting my fertility, yet for 1 in 4 couples this is a very real symptom. Unfortunately the presence of Endometriosis can have a direct effect on fertility due to the scaring and damage caused by these mutant cells. I say I was lucky but that's probably debatable given the difficult time I had trying to build a brood. I sadly lost my first child late into pregnancy, and the first kiss I gave my son was also his last as he fell into the longest of sleeps; I thought my heart would stop beating and my lungs would no longer know how to breath as the pain was so deep but I kept on going and over the next two years I was able to carry (with the help of surgeons, doctors and a needle and thread) two more children into this world.
It was post children, coming off the pill, and enduring some very stressful personal times that I started to succumb to my symptoms, pain came to town and he was not alone for just like Bonnie and Clyde there was another gun toting character, called by the name of 'fatigue' (feared by some , loved my none)
That was in 2007, the year of my diagnosis and first diagnostic surgery (a golden standard that has not changed as women are still diagnosed by Laparoscopy) and now in 2015 pain has outstayed its welcome by 8 years to a point where I'm so institutionalised by its presence that I'm not sure what its like to live without it; except of course it's all that I wish for.
In these 8 years I have endured multiple surgeries and waved a long farewell to my right ovary, I have shown my dignity the door (as its a guest that leaves a lot easier than pain does!) whilst displaying my 'ladyness' to dozens of doctors and consultants in the hope that somehow, someone could possible exchange my dignity for the an answer and ultimately a cure to the hell that I endure every day.
In these eight fine years I have raised my two children alone whilst managing the demands of a tricky divorce and subsequent volatile relations, I have loved and learned the hard way in that life can throw punches literally, I have cared for loved ones whilst they have passed on, I have worked hard and found myself running my own business, I have graduated from art college with a Masters in Arts Degree, I have run an Endometriosis Support Group raising thousands of pounds for Endometriosis UK whilst also helping lots of women find their way in this medical jungle; I have had a fruitful existence it cant be ignored; I have defied my pain.
Or have I?
In all these years it is until only recently that I have realised (with the help of some very potent Psychology sessions) that I have been denying my pain, denying my illness as a coping strategy to enable me to move forward despite my suffering,
Every day I wake up, often crippled with pain, as I now also have Fibromyalgia as well as Endometriosis; like two jealous sisters competing with each other for mothers attention (I'm Mother!). Well I can hear them both and that is exactly my point. I have 'got through' these years highly functioning, like someone pulled out the throttle and forgot to put it back, cranking up the volume to drown out the squabbling sisters hoping that maybe if I ignored them they would eventually get bored and leave me alone; alas they have not.
I have come to realise that although outwardly it appears I am defying the pain, my diagnosis, that I am achieving and getting ahead I know without a doubt that my pain is still winning the day as I have allowed it to stay, I have become accustomed to my daily pain management rituals involving enough narcotics to knock the hulk into submission, wheat bags stuffed down my elastic waistbands that follow me to work in the morning red hot enough to burn the skin and ice-cold and no-use to anyone on the way home; electronic tens machines in all their sticky glory that seem to cause much amusement to anyone not using them for pain management; and the list goes on.
The insidious guest has weaved its way into my home and I have allowed every aspect of my life to be held to ransom. I work self employed so I cant sack myself, I don't go out and when I do I am 'that friend who only drinks water' , I no longer take care in my appearance, not like I used to, and I have grown weary in both mind and body alike. I am a tired in all aspects of being me, tired of being in pain and tired of being tired.
This may sound defeatist, but I am being honest and open about how I feel and within this truth you find defiance.
I can no longer drive myself on full throttle; I see that all this ever did was make things worse and the louder I turned up the music to drown out the noise, the louder the jealous sisters bickered. It became a cycle that I could not sustain. Instead I have turned my music down and I am listening intently to Mademoiselle Endo and her moody sister Fibro for they may just hold the key; not to a cure but to understanding and a better quality of life.
If I wake up in pain then I acknowledge the pain, I allow myself to feel emotions about it and I hold no shame at all in de-tasking my day in order to facilitate whatever rest and 'pacing' I can. I have stopped trying to frantically push pain out the front door and have reverted to having civil conversations with it (based loosely around setting a departure date).
I have begun accepting the word Disease, I have begun making peace with the grief of loosing all that I hoped to be and I am learning to remind myself that some mountains are just too big to climb at the moment and in all honestly the only person expecting me to climb any mountains is me!
I feel that now, still immersed up to my eyeballs in pain medication and paraphernalia, as raw as I could ever feel, with no end in sight (unless my next spine-injection does what its supposed to do and miraculously blocks the pain to my uterus), that I am now defying my pain because unlike before I realise acceptance and living in the now, pain and all, brings me a sense of mental control. Learning to listen and accommodate the unwelcome visitor with a new sense of mindful knowing.
See, I have another long-distance relative called Mindfulness and its packed its suitcase and is coming to stay too; Its possible that inviting Mindfulness into my life, rather like hiring my own pain specialist 'Mary Poppins', might just be what's needed to loosen the grip pain has on my life, to encourage it to quietly take a seat in another room along with the bickering sisters of doom whilst me and 'Mindful Poppins' have a carefree cuppa (caffeine free of course!) in the kitchen.
Fig1 Image taken from https://angiesdiary.com/wp-content/uploads/2010/09/TheVisitor_big2.jpg
For more information about Endometriosis visit www.endometriosis-org.uk
A blog by
Michelle Middleton
Support Group Leader - www.endometriosissupportgroup.co.uk
No comments:
Post a Comment