Recent Hurdle

(Note: This could be distressing, caution advised)

That morning started like any other morning.

Up at 7am, dressed and out the door by 8:15am. I felt good. So good, I had heels on.

As I made the commute to work, I sang my heart out. Singing along to my Disney playlist, I was happy.

About 10 minutes away from the office, I felt a strange twinge in my side. With my insides being as angry as they are, god knows this wasn’t anything new. However, the severity of the pain and the rapid onset was. How I made it to the office, I’ll never know, I can’t remember the rest of the drive. Something was very wrong.

I abandoned my car just outside the building, fearing I wouldn’t be able to walk the distance from the car park. I could barely walk. It took all my strength to stay standing. The pain was so intense I had to hunch over, taking slow steps, like an old lady.

I could hardly breathe.

I stumbled into the building, the first to arrive, I clutched the walls as I staggered to the bathroom. How is it possible to feel like I was going to be sick, pass out and scream all at once? What was happening?

This agonising pain increased from 1-10 in just twenty minutes. I didn’t have time to reach for my rescue meds, to apply a heat pad, to do anything. I was alone & scared. Shaking, I dialled my husband’s number. Knowing he would be busy at work, I held my breath, squeezing my eyes shut against the pain.

Between sobs, I cried for the receptionist to pass the phone to my husband.

In all the time I have been struggling with Endometriosis and pain flares, this was the only time where I’ve made a conscious decision to call an ambulance.

Nick reassured me, told me to call 999. I did.

As I was on the phone to the emergency services, my manager walked in. She took one look at me and took over. She will never know how grateful I am that she was there, with me, that day. I laid my head on the desk, crumpled in pain, trying to breathe, trying to stay conscious.

I felt like I was dying. The pain was so bad. Something was very, very wrong.

Three calls later, we were told help was on the way. It felt like it would never come. Just when I thought I couldn’t hold on, Jade said, “Oh! They’re here now.”

The sigh of relief I released was immense. In that second, I thanked everything that they made it.

Like angels, the paramedics swooped in and immediately took over. They took one look at me and hooked me up to Gas & Air. I then had lots of stickies on, that told them how my heart was doing. It felt like it was aching.

‘Why is this happening? Again?’

I had to shuffle to the ambulance, a paramedic by my sides, sucking on the gas.

It was all hazy as I drifted in and out of pain. I remember Jade wishing me well, giving me my bag and then we were on the way to the hospital.

I laid on the gurney, unable to straighten my legs out. It was like my body instinctively knew to curl into itself, to guard against pain.

I winced against the jerky movements of the ambulance as it stopped and reversed at the hospital. And again I was awash with relief as the ambulance driver opened the doors and I heard, “Is this your husband?”

I lifted my head and our eyes locked. And I cried. I knew that I could collapse because I knew I could lean on Nick, that he would watch out for me and pick me up again.

I was wheeled into A&E and I braced myself for the onslaught of questions…

“What’s your name? Date of birth? What’s happened Aimee? How is your pain now?”

It was the same routine, just a new hospital and new faces. These doctors didn’t know me.

I think every woman with Endometriosis struggles with new doctors, reliving all the traumas, the medical history and desperately trying to make the professionals see how bad the pain is, what it’s like and that it’s not all in your head.

The notion that I might not be taken seriously and discharged is always a very real fear, in any hospital visit.

Luckily, something was shining down on me. I was blessed with a very understanding doctor who could read the pain written all over my face. She overruled other doctors and some less-empathising members of the nursing staff, she held my hand as I cried and rolled around the bed in pain.

She heard my “Please. Please help me.” and answered…

with morphine.

There’s always a question that I dread, not because the doctors have to ask it, but because I have to answer. “Aimee, could you be pregnant?”

Something squeezes around my heart each time, I answer in the negative.

Despite my constant rambling about previous surgeries and cysts and MRI results and ovulation pain stories and pain killer lists, there still seemed to be a lot of confusion about what was actually happening to me.

Some theories were:

  • Ectopic pregnancy
  • Appendicitis
  • Pelvic Inflammatory Disease
  • Some sort of infection

All theories that I’ve heard before, bouncing around my head. Theories that have all been proven wrong. This was my Endometriosis.

The doctors, thorough as they were, insisted on an Ultrasound scan and an X-Ray.

By this point, I had been given paracetamol, a diclofenac suppository and a whole lotta morphine, along with the two tramadol I had taken myself whilst still at work. I know I sound like a drug addict. But that’s just how bad the pain was. I can’t even describe it now, like I’ve blocked it out.

I could barely stand still for the chest X-Ray. I held onto the machine, my legs shaking, biting my lip to keep from crying out. It was all too familiar, all too much. I lowered myself back onto the gurney. The Radiologist hurrying to make a call to the Ultrasound department. She managed to squeeze me in, luckily. That meant that I wouldn’t have to wait for 7 hours for a scan.

I was taken back to A&E before being taken to the ward. I would be admitted. I was shown to a bed, and waited as my husband went to the car to collect my overnight bag (as practised as we are at this, he knew I would need it).

While I drifted in and out of restless sleep, the drugs starting to overpower my senses, the doctor came. I struggled through an internal exam, I gritted my teeth against the dismissal of my accounts. The gynaecologist told me everything would be fine, told me it wasn’t a problem with my cysts, or my Endometriosis. I couldn’t understand what else it could be. Dazed, I returned to my bed, texted my husband, who quickly returned and wanted to speak with the doctor.

She retracted her original comments, telling Nick she suspected the Endometriosis was the culprit, along with an internal infection. I was filled with antibiotics; a large dose via IV and 2 lots of oral antibiotics. What had caused the infection? 

I will never know.

I was discharged the next day, after being told I should have plenty of medication and pain relief at home and should therefore be able to manage the pain. I was ensured that things should start to improve now I was on the antibiotics.

I doubt that there was ever any infection.

When I had failed to ovulate after stopping the zoladex injections, my doctor prescribed me Clomid. This drug works by stimulating the ovaries, to encourage ovulation. I believe that the Clomid irritated my ovary (and in turn, the attached cyst), increased its size, which then aggravated my Endometriosis and caused the flare up. The fluid in my pelvis, could have been just another consequence of this.

And following a tense few weeks, waiting for a hospital appointment, my Gynaecology specialist confirmed this… Right before he offered me a ‘final’ solution.

I think that’s enough offloading for now, don’t you? Just know that I am incredibly appreciative of all the support and light I have received, and I will be alright in the end – after all this will only be a small part of my journey.

xo

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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.

Post-op Realness (graphic!)

On 20th September, I had my second laparoscopy.

Since my operation, I haven’t cried. I have tried to be strong, if I lose it- even for a minute, I may never pull my shit back together again. In the past when I’ve cried, like a sneeze, the people around me cry too. This makes me feel guilty. Guilty for making them sad, guilty for making them despair along with me, guilty because there are people in the world in a worst situation than me.

I was re-diagnosed. This time with Stage IV Endometriosis. My entire abdominal cavity was covered in cysts; on my ovaries, uterus, ureter, appendix, bowel, abdominal wall, diaphragm, a lot of Endometriosis, everywhere. I have seen the photographs my Dr took during my surgery. I have seen the physical damage this illness has caused. Now I’m dealing with the emotional damage.

 

Every day since my surgery, I have woken up in pain. At 6:30am, my husband, who has been a never-shaking source of support and strength, fills my hot water bottle and slides it under the covers while I sleep, and then leaves for work. He has been there every step of the way, and although he cannot take the pain away, he has shouldered this burden with me. He’s been there: when I’ve woken him up in the middle of the night, moaning in my sleep as I struggle with pain, he has waited alone in a hospital room- waiting for me to come out of recovery, ever being the calm in the eye of the storm. As I start to panic and become overwhelmed- I look to my husband, hold his gaze and I’m able to breathe again: “We’ve got this.”

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