Too much

Last night, I took too much morphine. Irresponsible. Dangerous. Essential. This was not a ‘cry for help’. After all, I’ve been crying for help for 3 years now and it counts for nothing. I did not take an overdose and I don’t want to die.

But, the had pain enveloped me, dragging into my legs and causing my stomach to bloat unnaturally, like a balloon. And I was alone. I am alone with this pain. There are very few people that understand exactly how it bruises me, how it is killing me slowly, day-by-day. Plenty of people have seen me in pain, I am lucky to have such a supportive and caring family, but they don’t know.

I didn’t measure out 5ml of Oramorph. I just unscrewed the cap (which is a chore all on its own because of the child safety top!) and took a swig, a gulp.

As I laid in bed, praying for the pain to stop, praying for the endometriosis to just fade away, my body began to react to the medication, and as I realised what I’d done, how silly I’d been, I began to panic. But I was alone, I had to coach myself out of a panic attack and once again carry on despite of it all…

 

“Barely there-

Standing horizontally, shaking, on the end of my toes,

my face turned up to a starless sky, blocked by a veil of ceiling.

My limbs are heavier than steel,

uncooperative against the unyielding torrent that is flooding my body and my senses.

Almost too much-

My joints creak, protesting my fool’s attempt at slight movements, almost too painful to finish the motion,

and so I give up.

Closing my eyes while my thoughts swim and flail, incoherent,

unable to follow one caution on to the next.

I need to cling to someone stronger, warmer, better than me, I need to be held.

Holding my broken pieces, frayed edges, together.

As I lose control, each action has a little something extra, a little jig, like a tic I am unable to hide.

It is easier to lie still, taking shallow barely-there breaths.

There is what’s left of the strange tang in my mouth, the last testament of my weakness and evidence of my defeat against an unrelenting adversary;

Pain.

And Pain is lonely.”

alone
Clara Lieu Fine Art

What a nurse.

As I laid on the nurse’s couch, my mum stood beside me holding my hand tightly, I was engulfed by a deep wave of sadness and defeat. My nurse approached, gently explaining her actions, looking away I felt her cool hands on my stomach. I tried to steal myself against the sharp pain of the needle, a puncture wound, the solution that would render my remaining ovary useless and chemically induce menopause, again, at 26.

Thankful that the pain from the needle, unlike my Endo-pain, is sharp but over quickly.

I squeezed my eyes shut, feeling them water and almost let go of my emotion, but instinctively, I knew that wouldn’t be fair on my mum, or this calm and compassionate woman who was trying to help me manage the endless pain.

I am devastated that I have had to go back on Zoladex injections. This is my 6th week of relentless abdo pain. I am now unemployed and spend most of my time indoors, either in bed or taking things slowly, drugged up. I can count the number of times I’ve ventured out of my house on one hand and the amount of times I went alone are even less.

I don’t know how long it will take for the injection to change my body, for the side effects to take hold and plunge me into a storm of yo-yo body temperatures and mood swings. This time this treatment has punctuated the end of an unsuccessful year, a year spent trying to conceive. At the front of my mind, the single harrowing thought; well, there definitely won’t be a baby now.

I have failed to conceive in 13 months and I can no longer tolerate the relentless pain caused by my Stage IV Endometriosis and my time has run out. For now, we must pause our dream and wait for the professionals and doctors, who will fail to fill me with hope and solutions, to help me. I must wait until the next step can be shown to me by someone who should have all the answers.

Can you blame me for being sceptical? The last time I visited a doctor, he dismissed my severe pain and my sadness and pushed a prescription into my hand. A green piece of paper which I could trade for pain relief. The biggest bottle of liquid morphine I’ve ever seen. Three times the amount of Oramorph that I’ve ever been given before. Is this the answer? Flood me full of strong drugs, to block out my pain, which will leave me immobile, comatose, restrained and incoherent. The drugs he gave me are designed to give relief, but are also effective in keeping me pliant and silent. It’s all too much and I need a break.

But by going back on the zoladex treatment, I am hoping the pain will disappear and the active endometriosis should settle down. This will also cut my ties to the stronger pain killers and allow me to live my life, like a normal person.

I was brought out of this reverie by my nurse’s slight pressure as she applied a dressing and gently touched my shoulder, our eyes locking, and a smile. I sat up and zipped up my shorts, gingerly sitting up and testing my aches and pains. I sat across from the nurse as she scanned the computer screen looking to book my next appointment in a month’s time. Yes, this is a monthly ‘torture’ regime.

“Now, I won’t be here when your next one is due…” she said quietly.

“Ah, are you going on holiday?”

She laughed nervously, and softly said “No, I’m actually leaving the practice…”

With that final sentence, the emotion that had been brewing inside me roared in my ears and I lost control for a small moment, my resolve crumbling, tears in my eyes. I do not know this lovely lady personally, I only met her when I joined the surgery and started my first course of injections last year and I have never seen her out of her nurse’s uniform. She is an amazing nurse and a good person, who made me feel at ease and make this small but awful moment, once a month, that bit easier.

You see, I don’t want to have these injections. I didn’t a year ago and I don’t today. I want to be normal. I want a period that doesn’t leave me incapacitated. I don’t want pain every day. I want to conceive, naturally. I want to have a baby.

But I found I could be ok with it, with having these injections. As long as I could have that 10 minutes’ interaction with someone who understood what I was going through, who showed me compassion. I could cope with this rebound, if I had someone who knew me. I am full of gratitude for all she has done for me, for understanding, from one woman to another, for being a friend as well as an excellent Nurse.

I have no doubt that she has broken hearts with breaking the news of her resignation. But, short of demanding that she stays, throwing a tantrum and locking her in her nurse’s room, there is nothing I can do but wish her all the best in her new adventure.

So, there’s nothing else to do but pull up my big girl britches and get on with it. Life has given me these sour lemons which I will turn into the best damn Lemonade we (and Beyoncé) have ever tasted.

I hope you read this and know you will be missed. Good Luck Nurse P. Go with love and my very best wishes.

Tramadol vs Fentanyl (vlog #1)

I’m doing something a little different today-

Because it’s taking so much out of me to get words down, I decided I would do my first ever video entry, my first VLOG!!!

 

Be kind- 

pain
click here to watch

 

*Update: less than 12 hours after this post/vlog went live, my period started. The patch is back on, I’m in pain and I’m not pregnant. Oh- and my favourite comfy pants are ruined. 

This is what it means to be an Endo Warrior

D e f e a t e d ?

I haven’t slept for 3 nights. Tossing and turning, uncomfortable and exhausted. It’s been a few days now since I’ve slept all the way through. Maybe that’s why I feel so drained?

On Tuesday I visited my GP. This is the first time I’ve seen him in 2017. My pain killers don’t work as well anymore and I’m having to use every trick up my sleeve to get some relief. I’ve tried other things; medicated menthol patches from Amazon, a new TENS machine, all sorts. None of it seems to be doing any good.

tens
Try this TENS here
The doctor only told me what I already knew. I know there’s no cure. I know things were pretty awful inside me during, and still following, my surgery in September. I know at some point I’m going to have to make that final decision. His question was: “How much longer are you going to continue trying to conceive? How much longer can you stand it?”

If you’d asked me this last night, my response would’ve been; no more. I can’t see myself getting pregnant, I can only see pain. I’m only just managing to pull myself out of my pit after a week’s flare, I’m not sure I’d be able to cope emotionally if something bad was to happen after I conceive. I already know my tube, the wanton singleton, isn’t healthy. The risk of having an ectopic pregnancy is high; if that occurs not only will I love this last fallopian tube, but also a baby I have wished for, for so long.

Today, however, I’m still profoundly pessimistic about things but I’m not sure I’m ready to throw the towel in just yet.

Surely there is another option? Anything!

list
The list of stuff I’ve tried and that failed is getting longer…

If anybody has tried anything that has provided some relief, or aided them in conceiving or in making such an impossible, difficult decision, please contact me.

I’m almost there…almost ready to admit defeat, but- not quite.

I am not unreliable. My illness is.

After having yet another troublesome half a year, health-wise, I once again find myself in a state of unrest. Awaiting further surgery and battling monthly flares courtesy of my Endometriosis, has left me feeling weak and lost. Unable to fulfil my role in my new job, I am unsure of where that leaves me professionally. I could get a part-time job, get stronger, strive for more responsibility and more hours but then I crash down again once my illness dictates I’ve done enough or too much.

I never thought I would have to plan out every aspect of my life, constantly asking myself; “What if I get sick? What if I need more surgery?”  I have never felt more reliable in my life. Lately, it feels like this illness is who I am now, it’s my life and I have forgotten what I enjoy, what my goals were, and who I am. It’s almost as if I need to learn who I am, reconnect with what I want from life. It saddens me that I have forgotten what I was like before my symptoms first started. Was I fun? Full of energy? Outgoing?

I look out from my office window, watching the clouds float by, blurred in the winter breeze, the sun shines to hide the cold. The clouds move so slowly and I feel dizzy as I watch, it’s almost as if I can feel the minutes tick by, me frantically trying to catch up to life.

As I sit in my pyjamas, on a Friday morning, writing this entry, it is difficult to look beyond the 8th of December, the date of my next surgery. A surgery that will remove my faulty ovary and in its place, a gaping hole. What do I fill that hole with? How can I mend myself from the inside out?

I don’t know the answers to these questions yet, I may never know, but I will stumble along as we all do in life, trying to do the best that I can, with people that I love, with patience and understanding. 

 self

 

I regret that I cannot publish more light-hearted posts at this time, but my thoughts are hectic and do not always make sense, but I use this blog much like a journal, and hopefully my sisters with illness can relate and will take comfort in knowing we are not alone. Please reach out to me, if you are struggling today.

Single vs Plural

 

writer and her dog.jpg
A writer & her dog

I’m going to say what no feminist, or girl gang member, is supposed to say; I like being in a relationship. I love it, I love being a We, being an Us.

I feel safer around others, don’t get me wrong- I love my own space. I like sitting by myself, reading, writing (sound like such a geek!) and watching the TV I want to watch.

I read a lot of Danielle Steel novels through my adolescence, the trauma of heartbreak and the drama of finding love made a lasting imprint early in my life. I was transformed from a shy girl to a hopeless romantic within a year, as soon as the wave of hormones took me over at 13 years old.

I watch re-runs. I can watch episodes over and over until I find new bits to laugh at. I watch shows like Sex and the City, Friends and Downton Abbey. As I nervously giggle at Samantha’s sexcapades or cheer Carrie on in her fight to win Mr Big, or cringe at Chandler’s bad luck in early relationships and frown at Mary’s stand-offish, stubborn attitude – I am thankful that I am not alone, that I have found my other half, and that I’m NOT single.

I know, sacrilege! An independent woman, declaring that she needs to be in a relationship, needs to have a man next to her, am I mad?

But, now I live with a chronic illness, I have begun seeing myself as somewhat unreliable, with a fragility that I cannot control and an insecurity that sometimes gets the better of me, despite how hard I try to get a hold of myself.

 

The thing is, I can’t even remember what I used to be like before I was plagued by chronic pain and worrying if I would be ill again next month, or trying to describe and explain every single pain I feel, desperately waiting for my next Dr’s appointment.

And to imagine dating, or trying to explain why I am the way I am, to a stranger, doesn’t bear thinking about. My illness has turned me into a needy, insecure, reassurance-seeking, crying, stressy mess. A mess which my husband is legally obligated to clean up. I feel incredibly guilty that I wasn’t like this when we first met, it’s almost like I’ve lured him into false pretences, like the don’t worry I’m on the pill trap, only with less sex and more late night chemist runs. Nick is incredibly patient and understanding, and I know I married a great man.

So, while it’s awesome having ‘me time’, and that I’m irrevocably in love with my husband, I’m also close to him, like best friend close. And the fact that I can tell him everything, makes life with this bag of shit illness easier to live with. He gets it. He gets me.

If I didn’t have this best friend, I wouldn’t be living it up with my single girlfriends like the girls in Sex & the City. I’d be living at home with my parents, sharing a room with my little sister, spotty and an emotional wreck.

After just 7 words; I’ve leap-frogged back to 2004. I’m a prude, a bof & socially anxious. I have the same school friend that I have now with the same senses of humour but without the worldly knowledge we possess now.

In the words of Ace Ventura: “No, spank you very much.” My life may not be perfect right now, but it’s a damn sight better than it was back then. That’s good, right?

Progress.

 

Tell me it’s just a bad dream…

anxiety-burn
“No rational thinking can erase the thought or feeling.” – Beethy (the artist)

 

As the panic set in, I laid in bed, my mind running 200 miles per hour and I tried to understand what was happening to me. Am I having a heart attack? I was laid in bed, my husband sleeping next to me, and I was overwhelmed by silent sobs, suffocating, gulping breath so deep my lungs started to burn. I can’t breathe. My hands began to shake as I tried to sit up, hot tears stung my eyes as I desperately tried to regain control. I’m drowning- right here, in my own bed. I could feel a cold sweat develop all over my skin, the cold morning causing goose-bumps on my arms & legs.

This went on for what seemed like hours, but was in fact only six minutes. Not knowing what had triggered this attack worried me more than how it had physically hurt me. What was the matter with me? I don’t have panic attacks. Brushing myself off, I mentally chastised myself & put the kettle on.

A couple of days later, when I was feeling mentally strong enough to analyse what had occurred in the early hours of that morning:

I had been woken from deep sleep by a sharp, stabbing pain in my right side, just under my bottom rib at the front. This pain had triggered such a fear that my mind and body had struggled to deal with it rationally.

My mind had raced from identifying the pain, giving it a name and then rushed to icy thoughts of the future and the “when will it end?” It won’t. The fact that I now know I have active endometriosis on my diaphragm has somehow altered my perception of how my illness will impact my life in the future. In my stricken state, I irrationally, put 2+2 together and came out with 5 (I’m shit at maths at the best of times!)

If I had endo on my diaphragm and my Dr was too scared to remove it, it was too close to my lung, it’s travelled from my pelvis, reproductive system and bowel, up to my diaphragm. It can’t be too long before I’ll have endo in my lungs! Coughing up blood every time I get my period!

A horrific image accompanied this last thought. It was me, fast-forward by 6 months, or a year. I’m crying soundlessly, sitting on the edge of my bathtub, my hand to my mouth. Gently rocking back & forth. Pulling my hand away, there is blood. My mouth forms the ‘O’ of a sob, but I remain silent. Stark red contrast against my pasty palm and crimson staining my teeth.

This image seems to be scorched onto the insides of my eyelids because I see it every time I close my eyes. When I remember the fear and panic and this projection; my focus blurs, my vision distorts and I’m suddenly sucking in air with desperation.

Panic? Anxiety?

I don’t even know what to call it.

But it’s safe to say, I haven’t slept properly since this first happened. Which is why I’m posting this at midnight.