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.

The Worst Thing about Periods

Being a woman is never easy. It doesn’t get any easier no matter how old I get. One of the crappiest things is getting my period.

Unable to control it, we are slaves to our bodies. I will forever be in awe of women that know the exact date their period is due, who still manage to function and look amazing, even whilst their uterus punishes them for not having a baby.

 

juanbarquero
Juan Barquero’s Nudes 07

 

There are lots of things I dislike about my period. Because of my Endometriosis, my periods mean horrendous cramps and a heavy flow.

At 16, tired of the ick factor surrounding the sanitary towel (I don’t know why they call it that!) and fed up of running to the toilet every 10 minutes during lessons, I swapped to Tampax, ignoring the TSS scare from my mum.

Using tampons immediately eased some of my period anxiety. I felt cleaner, there is nothing worse than physically feeling that ‘bleugh’. I even got the Compact ones which avoided any embarrassment when I, winner of the Clumsy Queen award 2007, dropped my bag, emptying its contents on the classroom floor. Aimee 1, Period 0.

 

I hate the False Stop. It has happened to me a lot recently. It makes me groan outwardly every single time it happens and I hate it. The False Stop is when you’ve had 12-24 hours of clean pad or dry tampon and not a speck of blood, so you think my period must’ve stopped. You grab your sexy lacy knickers out of your drawer, hiding your white cotton M&S specials until next month. You’ll go out, make plans, maybe even have sex. But, your uterus is just luring you into a false sense of security, setting you up for a cruel joke, that you’ll never find funny. Five minutes in your new knickers, one cocktail down, or mid-sexytime, you’ll get a suspicious something ain’t right feeling.

BAM! Mr Red is back. And his timing is shitty.

My eyes hit heaven and I facepalm… FML. Aimee 1, Mr Red 1.

 

I hate that I’m forced to carry around essentials and my bag has to be big enough to find my top drawer in it. I look like a Nomad. It’s a nightmare because you can guarantee that the one time I don’t take all this stuff (just in case!) I’ll need it. Although, I do get to buy some pretty beautiful bags. Aimee 2, Mr Red 1.

 

I never get to buy the sheets I want. I see these awesome Pinterest Homeware pins and sigh in wanting. I have come to understand that I will never own white bed sheets, white towels, white jeans. I only just waver this rule for white cotton pants! And even then, I have tie-dyed a handful of them. It’s just not worth the risk. I’m an accident-waiting-to-happen when it comes to spill-able liquids or foods that stain, and I’m cursed with crappy hormones and periods. Both would ruin white 500-count Egyptian cotton sheets. Aimee 2, Mr Red 2.

 

As I’ve always tried to be more a ‘the glass is 1/2 full’ type of lass- 50.9% of the UK population are female. And this means that there are approximately 32,555,572 girls and women in the UK right now. And all of them will know the unpleasantness that is menstruation. We’re not alone. Women everywhere & Aimee 3, Mr Red 2.

So far, it looks like I’m winning and I need a win so I think we’ll leave it here for the time being- whilst the odds are ever so slightly in our favour.

Ladies,  what do you think is the worst thing about periods?

 

NOTE:

The art I have used in this post is by French artist Juan Barquero. Please go look at his creations. He is a master artist, his work shows such poetic sensibility. I’m yet to find a painting that describes the way I feel about the weaknesses of my female form with as much clarity. Image result for twitter logo png transparent backgroundImage result for instagram logo

 

 

 

 

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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