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/

A Week in my life as an Endometriosis Volunteer

A week in my Life as an Endometriosis UK Volunteer

Running an Endometriosis support group, which I have done for around 8 years now, gives me great pleasure as I know that I am doing my bit to help others going through the same obstacles that I have been through , and that I still am going through.

                                 Image taken from the Endometriosis UK Website

Recently I have started thinking about what the role of being a volunteer entails, and I have decided to record a ‘week in the life’ account of my personal experience of volunteering.

My week begins, like most days, in the early hours of the morning as I am scrolling through posts within the Facebook group “Endometriosis Chat Yorkshire”. This is the group that I recently set up, for the group members, from Yorkshire, to access and to help facilitate chat about Endometriosis; it enables local knowledge and understanding and encourages mutual support, which I benefit from greatly. I often fall asleep on the sofa and wake around mid-night, this is why I'm an e-owl; as I end up doing most of my browsing nocturnally!

For example, I had posted a question, about how pain can be described? due to a very awkward appointment with my Gynaecologist, as the way in which I described my cramping pain, as ‘burning’, was mocked.  I felt embarrassed and the incident upset me, so I turned to the on-line support group and shared my worries; and in return I was supported in droves, I was reassured by those that know Endometriosis the most; those that live with it. This group also enables members to directly access support from myself, and others; it  enables me to signpost members to information and share any relevant or interesting information from Endometriosis UK or in the news.

On waking I normally feel dreadful and it takes me a little while to ‘come round’ (the endo-zombie fog) washing down my numerous pills and supplements with a much needed caffeine free cuppa. I always make-sure I check my support group emails and Facebook groups before I set off to work just in case someone has made contact with a question or is in need of support.

My email address endometriosissupportgroup@hotmail.com , which I have had for as long as I have run the group, maybe 8 years now, is an important contact point for the support group;  and I've had emails from hundreds of women needing support. Currently I have 250 names on my contact list, which I use to send out information regarding the activities of the group (such as meeting information and fundraisers like The Primrose Ball). Often I don’t hear from people for years but every now and then I get an email saying thank you for keeping them in the loop; not everyone likes to make contact but they do like the feeling of not being alone.

I encourage group members to join social media for more daily ‘chat’ and I have a Twitter account and Facebook page/ group. I check all these several times a day to ensure I am responding quickly to anybody with an Endometriosis cry for help. I know it takes a lot for women to share their personal information and I want them to know that every word is important to me and I want to ensure they feel listened to; responding quickly is important to me because I know it’s important to them.

This week I am running an Endometriosis support group meeting, so I sent email reminders to my  group and also via social media; just to let people know that there will be a Support Group meeting and what the topic will be. This month I will be looking at pain management and medication; I will be sharing knowledge so I always make sure I have visited the Endometriosis UK website and its available publications; to ensure the information that I am sharing is up to date and correct. I am very careful not to share my opinions (ok sometimes it’s hard not to) but instead I listen, and signpost to the right legitimate information, with an emphasis on the Endometriosis UK charity being a primary source for information.

I have to ensure the location for the meeting is booked in, paid for and and suitably ready; and prior to the meeting I make the 25 mile round trip to collect the keys so I can access the meeting room at the weekend. I have often been known to forget this ‘key’ task and the last meeting was spent in a pub because I could not access the building! Talking about wayward vaginas in a crowded pub soon clears a perimeter!  The problem with being unwell, and taking medication, is my memory is poor and my own health difficulty can make running a group harder (I have Fibromyalgia too). My contact at the Shipley Kirkgate Centre, where I hold my meetings, kindly offered to meet me closer to home to collect the key next time, maybe she sensed my stress, and this was very welcomed suggestion.

To prepare for the meeting I use the knowledge that I already have, from my own experiences gained over 8 years and also talking with others, and I referred to the Endometriosis UK publication “Treatment for Endometriosis” which lists the general treatment (that’s treatment, never a cure) for Endometriosis management.

https://www.endometriosis-uk.org/endometriosis-treatment

 I never spend a long time preparing for meetings, as arriving to an empty room that stays empty can be disheartening, and limiting my time invested will limit my disappointment and help keep me objective about the end goal which is to ensure that there is a place for women and their families can go. 

The morning of the meeting I put together a small bag of refreshments (excuse to eat biscuits), pack of leaflets and my Endometriosis UK questionnaires, tissues, and I make the round trip again. I'm always a little bit hesitant before a meeting as I worry whether it will be helpful, if people can find it and if anyone will actually turn up! I always arrive in good time just in case anyone arrives early, and whilst I pop the kettle on I have a walk round the building (there is an exhibition on). I take the opportunity to put up an Endometriosis UK leaflet on the noticeboard and leave some in the info racks on the wall. 

Today I had just one group member attending the meeting (last time I had 9) and we chatted solidly for 3 hours, I don’t even know how we managed to chat that long without a drink or toilet break! I have always felt that even if no-one attends then at least there is a place to go for women and their families (and I get to eat all the biscuits). Sometimes I have twelve bums on seats, sometimes I have one , but it’s not about the number of people, it is about the opportunity to talk and speak the language of Endometriosis, to share information and to lend a supportive ear when it is needed.

This meeting makes me think that there is a void between diagnosis (or realisation) and the varied appointments there-after; it can be a long wait between each appointment and when the patient has contact with a medical practitioner (often surgical) and it is these gaps where the questions are raised, and the confusion and loneliness sets it. Women (and their families) need access to support, need access to information and they need to be guided along their journey. Endometriosis UK offers this through helplines and support groups, but a link needs to be made between the charities services and the referrer; or even better this care needs integrating within the actual care package in the first place..

After the meeting I leave feeling moved; I feel very strongly about some of the experiences had by the lady who attended the meeting; Endometriosis misinformation that has populated her journey, and which highlights how much damage can be done by someone who is trusted to know the answers. I also feel drained, as the physical demands on what is my day off, and the emotional investment of the meeting has left me feeling like I need to rest; but I don’t mind because I know that I may have helped someone on their Endometriosis Journey.

Today is my last day of the week (in the life of!) and I have had a fab Idea, harnessing Social media, to spread the word. Sometimes I forget my idea’s so I write them down. It’s an admin day today and first on the list is the Primrose Ball! It is time to sort out the booking for the Park Plaza so we can start running with the event; I promised my colleague (and co-founder) Rosalind that I would get some balls rolling; we are so excited about this event and this year it’s going to be bigger and better, especially because Diary Doll are sponsoring us and lending us their support! I also have just had a read of Rosalind’s blog, all about diet and healthy living for Endometriosis and I am very proud that one of my local group members (and Yorkshire lass) feels so impassioned about Endometriosis awareness and management too.

Finally it’s the last task of the week, apart for this blog and chatting on my Facebook group, as I complete the EUK Support Group survey, passing the information about my meeting onto the charity so they can keep a record. Looking back at my week I see how intrinsic running an Endometriosis Support Group is to my life, that for me it’s just what I do. I enjoy empowering others, encouraging conversation and discussion, facilitation and then seeing people make connections about things they share in common, and opening up knowledge to those that need encouragement and guidance.  Occasionally I have considered taking a back step but just when I’ve got to the point of acting on that thought I have received a card in the post, or an email in my inbox from someone who is thankful and all-the-better for the support they have received, and I realise that there is much work to be done yet and I'm absolutely not ready to hang up my pink pants just yet!

Please find the links as referred to in the Blog 

www.endometriosissupportgroup.co.uk - My own local support group website

www.facebook.com/groups/endometriosischatyorkshire Our Facebook Group 

www.endometriosis-uk.org - Endometriosis UK website

www.endofitandhealthy.wordpress.com - Rosalind Kirkhams Endometriosis Blog

Endo-belly ... the cruellest irony?

I may as well kick any self-preserving dignity out the window, (of which after the amount of gynae appointments I've had there is very little left anyway), and be absolutely honest about something which I find incredibly embarrassing.

I would like to dedicate this blog to my wayward belly; or rather to the enigma that is the "Endo-Belly" as it's fondly known within the many online Endometriosis communities.

                                    Definition courtesy of Google

Bloating is a very real symptom associated with Endometriosis, a controlled study in 2009 by the NCBI* concluded that, 

"Painful abdominal bloating appears to be common in women with Endometriosis and causes considerable symptomatic distress ... as 96% of the women studied suffered with measured bloating that was both painful and emotionally distressing" 

As a support group leader, this is a symptom that gets all the ladies nodding in sisterly agreement, bonding over distended waistlines, sharing stories of discomfort, and embarrassment, with a gratefulness at finding 'others' who know how it feels (after no doubt spending years feeling that they were the 'only one').

I have taken to photographing my belly; even though I find it hard, as a way of proving to my GP that 'it happens', I feel that using the word 'bloated' is not enough, I am MORE than bloated ... I am uncomfortable to the point of agony as my belly grows itself towards a neighbouring postcode, I am miserable, and I am looking for a reason, and ultimately for an end to this embarrassing symptom.

There is as standard, the GP's obligatory finger-point towards IBS, (something I have had for many years too), which often precedes an Endometriosis diagnosis. However, IBS is symptomatically similar only in part, yet many women struggle to break out from their initial IBS diagnosis, which adds to the average, (and unforgivable) diagnosis time of seven years for women living with Endometriosis.

I don't go swimming, or wear fitted clothes, and a looming sense of horror fills me as summer approaches as it's the season of unforgiving, skimpy clothes, and the echoes of that dreaded "Congratulations...." start ringing in my ears.

                                                                       My Endo-Belly

My mountainous Endo-belly has resulted in numerous exclamations of, "when's the baby due?, asked by embarrassed well-wishers, who naively and thoughtlessly congratulated me on my bloated tummy. I have been congratulated so enthusiastically that I actually felt guilty for spoiling the fun; I have been guilty of deepening the horror further by pointing out that the only living thing inside me is possibly a tape worm! (Which may burst out at any-time like a scene out of Alien).

I am used to those discreet side glances in the playground as the wind catches my tent like top, and I have become best of friends with my jeggings, pulled so high that even Simon Cowell would blush! My bloat friendly wardrobe consists of clothes ranging from my 'normal' size 12, to a forgiving size 18; all because my belly has a life of its own. Hard and round; demanding to be seen, first thing in the morning, or last thing at night; there is no reasoning to my mysterious yo-yo belly.

Having to apologise for NOT being pregnant is both heart wrenching and embarrassing, and it demonstrates how living with Endometriosis has many side effects and psychological implications, which effect both personal well-being, and self-confidence.

If I know one thing, it's that it is never OK to congratulate a woman on being pregnant unless you know for certain that she is in bloom. However, being offered, a seat on a packed train simply on the grounds of serious belly-bloating is a bitter-sweet silver lining to what is an uncomfortable cloud.

This has a massive effect on the way I feel about my body, how I dress, how confident I feel in my own skin as a woman, especially when heavens forbid I have to get naked and be sexy. I can't even remember what sexy feels like. For me these moments are like taking a fumble in the dark with a beech-ball in the middle; the sensualities of my tum were long abandoned the moment I could use my belly as a shelf for carrying things.

Then comes the cruellest irony. Many women battle with infertility as a result of how endometriosis has ravaged their reproductive anatomy. They are also tormented by the way their bodies bloat and contort in such a way that people mistake them to be pregnant. In the past I have even bought a pregnancy test because when looking at my own reflection in the mirror I could not be sure that I wasn't expecting, I was seduced by the temptation, if only momentarily, to look at my body in the mirror, to caress my bump and to fantasise about "what if I was"?

Daydreams like these are often left unspoken, incredibly private moments, that inevitably lead to the realities of, "if only I was".

Endometriosis has a lot to answer for, it hits us hard not only physically, but it also impacts our lives detrimentally with the emotional and psychological burden which it carries with it. We are however, fighting back as we are connecting and finding awareness, comfort and support via online support groups. For so long I have hidden my 'Endo-belly' away, but recently I tentatively shared it online within the 'Yorkshire Endometriosis Chat' Facebook group , hoping to find others who understood ... To my surprise others began posting their belly pictures too; it seems that I am not alone and that brings me untold comfort,  I am normal, I am understood, and that is why I have dedicated this blog to my belly, so that others might also find comfort in knowing that they are not alone. The belly might be winning a few battles, but if we stick together and support each other, I know that we will win this war!

Written by Michelle Middleton

Endometriosis Support Group Leader

Co-Founder of the Endometriosis Primrose Ball

For more information about the support group 

www.endometriosissupportgroup.co.uk/

For more information about the main UK charity 

www.endometriosis-uk.org

* Study can be found http://www.ncbi.nlm.nih.gov/pubmed/"20085682"
Abdominal bloating: an under-recognized endometriosis symptom"

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

Fatigue - So tired it hurts

Fatigue is by definition a word to describe extreme tiredness or weakness through exertion or continued stress, which pretty much sums up one of the main symptoms of Endometriosis.

Tired of being tired? I know I am.

But its not just feeling tired, we are not simply a little bit sleepy, so as far as I am concerned the word 'tired' is far off the mark when it comes to describing that feeling when your whole body is in a total state of exhausted disarray.

So tired it hurts , not even sure where it hurts unless 'everywhere' is a place... and although sleepy (a side effect of some pain medications too) its not always easy to actually fall asleep no matter how much you would like to.

Fatigue is waking up and feeling like a herd of Buffalo used your bed like a dance floor, often there is nothing refreshing about 8 hours sleep , just literally a rude awakening. Somehow the blackness of a dreamless sleep is the only escape our conscience mind can find because once awake its the same old feelings of pain and fatigue.

Or maybe, its waking up feeling energised but as the day unfolds you feel like your being weighed down by a an enormous blanket, each step feeling heavier and more exhausting than the next.

Sometimes this symptom is most prominent just before, during or just after menstruation however fatigue can be a constant , day in and day out. Unmanageable and invisible.

Many women talk about having the occasional diamond day, where for no known reason pain and fatigue have taken a trip to the shops and their absence is deafening. Energy and optimism fills your body and your mind and you do do do; making hay while the sun shines. This is what is called a 'boom' of energy, and activity, that reminds you of what you used to feel like and what you wish you felt like again. However, with every 'boom' there is a 'bust' and over the following days the fatigue can come back harder and stronger like a jealous partner, furious at your momentary liberty and fighting to regain control.

The problem is not only the physical and emotional distress fatigue causes but also the lack of awareness surrounding fatigue as a symptom of Endometriosis and a total lack of support from a diagnostic and treatment perspective.

I can say this with confidence, based not only on my own intrepid experiences but also from the numerous encounters with women who have no idea that their Endometriosis is somehow linked with them feeling like their very life-force is being drained away.

Fighting illness, surgery (anaesthetic) , healing and medication including hormone manipulating treatments can put an enormous strain on the bodies resources, leading to fatigue.

Life does not slow down for those that fall ill and trying to keep up can exasperate pain and fatigue, pushing ourselves past our natural limits; mostly because we don't know where our new 'Endometriosis' natural limits are.

So what can we do? how can we manage fatigue medically or otherwise?

Firstly its important to let your GP know about fatigue, as there can be several other underlying health conditions which could cause this symptom, we often forget to consider that there could be more than one culprit post-diagnosis and linking in with medical practitioners will build a history and allow for further explorations. It could be worth discussing secondary conditions such as CFS/ME and Fibromyalgia which in my experience often follow on from long-term chronic pain conditions, especially those in women aged 30+.

Its important to look at lifestyle and consider both mental and physical changes, as our bodies may need a more sympathetic and endo-friendly approach.

Pacing ourselves, thinking about limits and not over-doing things especially during times where symptoms are worse will give your body the best chance of avoiding big flare ups.

Ensuring hydration, optimum nutrition and gentle regular exercise are fatigue-fighting actions, not cures necessarily, but certainly good practice choices to shelter ourselves from the oncoming storm.

Acceptance is key, taking time to acknowledge the now, to not take blame ourselves for how we feel but instead listening to what our bodies are saying and live a more mindful life.  This is a process, not something you can do over night, but a journey that can be painful as you let go of some things you really don't want to and accept the 'new' way of living.

I think of it a bit like a filter, the 'Endo-filter', which I now remind myself to apply to my plans.. things may seem achievable and realistic on paper but when that filter is applied I can often see that I'm doing too much and have given myself little chance at managing my symptoms. I might say yes but my filter says no no NO!

Fatigue is real, its debilitating and it can take the sparkle away from the shiniest of diamond days and it is my belief that a more proactive approach needs to be taken upon diagnosis by asking the question  "and do you suffer from fatigue?" 

This is why support groups are so valuable because without meeting others you often do not realise that the way you feel is not uncommon for women with Endometriosis. Many women have arrived at meetings totally unaware that there was a 'name' for how they felt and that it was a key symptom of Endometriosis, they left the meetings feeling like their world made more sense and ultimately more bearable.

Stealing a quote used recently by a renowned Endometriosis Specialist, "Endometriosis may not kill you, but it can destroy your soul" Powerful words that many will unfortunately relate to.

Thank you for reading my Endometriosis Blog, here is a poem to leave you with called 'Dear Body' that I wrote only a few weeks ago when I woke up one morning and felt overwhelmed by the pain and aching of my body.

Michelle

Dear Body

Why do you turn against me?

Was it something I said?

You betray me when I need you,

people thinking it’s all in my head.

I don’t want to keep on fighting you,

I remember a time when we were free,

but it seems the more I try to,

the less there is left of me.

Please body can we try resolve this,

Can’t you ease a little pain?

Can we get back to the beginning?

Or will things never be the same?

You know I've tried everything,

But it makes no difference to our ends,

All I want is us to be in harmony,

Though I fear your will, it never bends.

Dear Body,

It must be something I failed to do?

I have carried the blame for far too long,

Or a curse handed down from distant hand,

Or a past life that went terribly wrong!

My mind can’t make any sense of why,

I am in pain every single day,

Why my strength is leaving my once supple hands,

I never wanted things to be this way.

So body, please just talk to me,

tell me what I can do,

white flag is raised high into the air,

I surrender in my war with you.

Michelle Middleton

Endometriosis Support Group Leader

www.endometriosissupportgroup.co.uk