All I want for Christmas

All I want for Christmas

Recently I was out shopping with the children and on the radio a familiar song filled my ears, ‘I want a Hippopotamus for Christmas’; I have not heard this song for such a long time but as I used to sing it often to the children, I eerily know it word for word! It got me thinking, not about hippos, but it may as well be because it’s a big and ugly; it got me thinking about Endometriosis.

All I want is, rather naively and unrealistically, a cure! Not even Gerard Butler doing a Lady Godiva on a golden unicorn could compete with my desperate desire for a cure, a fix, a release from the turmoil inside my body, specifically my pelvis. Christmas is a time for joy and festivities, and as a mum I take this serious, I MUST be festive and joyous for my children, I'm a role model and it’s my ultimate responsibility. The children are too young to be burdened by the emotional and physical realities of chronic pain, illness, and how Christmas is overwhelmingly exhausting.

Once upon a time I lived for the works Christmas party, drinking and dancing and generally running amok wearing a Little Black Dress, Sparkly heels and a pair of antlers; It wasn't a good night if I was home before sunrise. However, now, things couldn't be different, gone are the LBD and heels (still got the antlers) and in its place are thermal slippers and a big hamster onesie!

 There is no going out as I'm too exhausted, no dancing, no alcohol due to my medication and the fact it makes me vomit bile(which isn't attractive), and late nights are simply out of the question; in fact the thought of a night out fills me with dread not excitement. This is what pain, fatigue and exhaustion does; it limits your ability to enjoy an active social life, instead your body aches for comfort and rest; and after a while so does your mind.

Christmas is a time to take stock of life, enjoyment and sadness are amplified as ‘the day’ looms. So much to do can be overwhelming especially when chronic illness cares nothing about the ‘season to be jolly’; more like ‘the reason to be Trama-dolly’. 

Cards, presents, wrapping, shopping, decorations and visits; so much to do and when you’re fighting fatigue and pain it can feel like a mountain to climb. The unexpected hero of the hour has been internet shopping, which is nothing short of a miracle. Place an order 7pm and its delivered 7am the very next day, not only does this seem like witchcraft, it also makes present shopping about as physically demanding as picking your nose; and even better with ‘Give as you Live’ , every purchase earns Endometriosis UK valuable funds to boot!

There is another silver lining to the Christmas cloud, and that is time off; much needed rest which is a gift in itself. Having the opportunity to spend a couple of days doing very little, watching TV, huddled under a comfy blanket dressed as a small furry rodent, basking in the warm glow of the Christmas tree; there is something distinctly medicinal about the spirit of Christmas. Everyone can find something to feel grateful about, be it spending time with family and friends, giving and sharing, receiving and being spoiled, indulging and relaxing, good food or the sheer relief that you made it through, despite Endometriosis, you climbed that mountain!

I have come to terms with the realisation that there is more chance of me waking up on Christmas morning and finding a giant hippo stuffed in my stocking, than my consultant giving me a phone call with the elusive cure that we all so dream of. So instead of wishing for the unattainable, I'm going to seize the opportunity to rest and relax, to take my foot off the pedal and be kinder to myself, as giving yourself time to heal is the most important gift of all.

Merry Christmas x

"See you in six months"

See You in Six Months

It’s been a little while since my last blog, maintaining the balance of a busy lifestyle and battling ill health leaves little room for the things I actually enjoy, thinking space and putting pen to paper is a luxury.

Recently I had a ‘Supra Ganglion Hypo Gastric Block’, which involved big needles and my spine (enough detail I think) in the hope of improved pain management, for at least a few weeks. It’s my third injection and it’s not in any way a cure, but an attempt towards an improved quality of life, if only temporary. It’s a tool, one of many, used to combat the pain of Endometriosis.

It was an exhausting procedure, in the hands of a fantastic pain management team, and it took all of my energy to lay still and not panic whilst the surgeon inserted needles deep inside my back and pelvis. Laying in recovery, gratefully nibbling hobnobs and drinking (a little less gratefully) some questionable tea, I was presented with the infamous (yet well meaning) phrase “see you in 6 months”.

Six months is a long time, yet somehow is a golden period of time to “see how things are” or “let things settle”; or between referrals from GP to consultation. When I say ‘a long time’, it cannot be underestimated how long six months feels when you’re in pain and struggling.

In the void of time between opportunity to be heard and understood, it can feel like torture when there is no support or after care to ask those other pertinent questions “how are you? Are you OK? Do you need help?”  Support is out there, but how do you know if no-body signposts you.

Last year (I'm not afraid to admit) I took the ‘ , which is the questionnaire that the GP thrusts upon you when it becomes apparent that you may not be coping; the results of my screener was unsurprisingly indicative of depression, that the quality of my life is greatly affected by constant pain and fatigue, that when I say “I'm struggling, I need help” I really do. A well-meaning and enthusiastic GP embraced the opportunity to refer me towards psychological support, a much welcomed and ultimately invaluable service signposted to me 8 years into my diagnosis, a little over-due one might suggest.

It would be a good time to consider the 'Endometriosis Pain Cycle' at this point, bearing in mind the long waiting times for diagnosis and the sparseness of appointments; like a classic pain cycle there is a connection between pain, low mood, anxiety, inactivity and fatigue , however there are many more factors to be considered too which are specific to Endometriosis. How to explain that living with Endometriosis and its associated symptoms can affect all aspects of one’s life, how to demonstrate that even Superman with his cast iron will and laser beam eyes, could be forgiven if he suddenly had enough of being super and hung up his cape, Endometriosis does that, it takes away what makes you ‘YOU’; it’s like kryptonite draining energy and stealing your life force. 

                                               The Endometriosis Chronic Pain Cycle

Six months was the wait, in between a few phone calls and letters , that’s half a year waiting for emotional support post-scream for help, feeling dizzy as I pedal round and round the ‘cycle of Endometriosis chronic pain’ (does that count as exercise). Physical and emotional pain does not suspend itself politely whilst you wait for appointments; symptoms persist, intensify, and this can make the wait unbearable as help is suspended like a dangling carrot just out of reach.

The dangling carrot boils down to potentially 10 minutes, a small nugget of time where you have to release months of pent up frustrations and hope that within the tears and emotions you relay your symptoms and ultimate needs in an appropriate way. Even I, seasoned and knowledgeable, am totally useless in consultations and I often kick myself that somehow I didn't manage to convey my ‘case’ in a clear way, instead I retreat within myself hoping the medical professional is a proficient mind reader. I kick myself because the opportunity for hope could be lost or postponed for another 6 months because I didn't say the right thing.

My experience of appointments, during these years, have been mixed; on one hand I have had first class care with understanding and clear ways forward (like sunbeams on a stormy day); yet on the other hand I have had to fight as lack of knowledge and even worse dismissal is the shadow that threatens each appointment. This uncertainty causes anxiety.

It’s almost like going to court, symptom diary under one arm, presenting your case to the judge and jury, fighting for a diagnosis (7 years is an appalling statistic for average diagnosis ), navigating the treatment plan, hoping for understanding ; the consultation is a pivotal part of everyone’s Endometriosis journey.

In my experience, it is about time more was offered in regards to the interim, a post-surgical “see you in six months” isn't good enough, there is nothing within the land of limbo other than fend for yourself and hope you find some support from somewhere which is appropriate. As a patient, I have to accept that for 363 days a year I am technically on my own fighting a disease that can cause pain and fatigue 24 hours. a day, every day; so as such, I must acknowledge the absolute importance of my own potential in taking control of the management of my illness, with the help and input of the medical services that I have the privilege to access, however limited it feels; and beyond this with complementary therapies and mindfulness, and the support of others (support groups are vital).

Ultimately, I have to take ownership 365 days a year, and bring in all I know to help me achieve the optimum quality of life that I deserve. It is about choices, about being brave, about reaching out to others (via Endometriosis UK) and gathering knowledge and information, bridging the gap between appointments, and ensuring all the expertise that is available to me is harnessed and not squandered; so when that next appointment arises I am not only a patient, I am an expert patient, fully prepared, and making involved and informed choices about my healthcare pathway.

                                             www.endometriosissupportgroup.co.uk

For more information about Endometriosis visit https://www.endometriosis-uk.org/

Defying pain or Denying it?

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.

                                          Fig 1 - The Visitor Big

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