Category / My Endo Diary

by ChronicWriter

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.

by ChronicWriter

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.

 

by ChronicWriter

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.

by ChronicWriter

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

 

 

 

 

by ChronicWriter

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.”

Continue reading →

by ChronicWriter

A small rant about big worries

1 in 10 women have Endometriosis. Around 1.5 million women in the UK are living with Endometriosis. Endometriosis is a chronic condition.

‘Chronic’ is defined as persisting for a long time or constantly recurring. There is no cure for Endometriosis and very limited treatment options:

Hormone treatments such as contraceptive medication (Combined pill, Depo Provera injection, Mirena coil, IUD implant)

Hormone Treatments such as Zoladex, starves the body of oestrogen which places the body in a temporary menopausal state. A lack of oestrogen causes periods to cease altogether. Once the injections are stopped, the ovaries will switch back on and periods return to normal.

These hormone treatments are not appropriate for a woman who is trying to conceive. While she’s trying for a baby, the Endometriosis will run unchecked, causing whatever damage. It could be months before she conceives, meaning months of discomfort/pain.

Another treatment option for women with Endometriosis is pain management. By using a hot water bottle, heating pad or hot bath, pain can be reduced. Mild pain can be treated with paracetamol or ibuprofen. TENS Transcutaneous Electrical Nerve Stimulator machine The electrical pulses are thought to work by either blocking the pain messages as they travel through the nerves or by helping the body produce endorphins which are natural pain-fighters. Some women have stated that Acupuncture has helped relieve their symptoms during a flare up.

Women may be offered the opportunity to have a Laparoscopy, which is a less invasive procedure usually used by doctors to diagnose Endometriosis and also, to treat adhesions and endometrial tissue outside the womb. This procedure provides some relief of symptoms but can recur in time and so some women have to have several of these throughout their lives.

Hysterectomy refers to the removal of a woman’s womb. Oopherectomy is the removal of both ovaries. Both are defined as radical surgeries and are irreversible. If a woman decides on a hysterectomy but opts to keep her ovaries the chance of Endometriosis returning is increased.

These radical surgeries are rarely offered to younger women or women without children. This is because the woman is expected to exhaust every option if wanting a child.

“No gynaecologist will agree to giving your a hysterectomy because you are 25 years old and don’t have any children. There are other things we can try and a hysterectomy is a final option.”

So I can’t get pregnant because I’m in pain all the time, and have Endometriosis. You tell me to consider IVF. Due to pain, I work part-time. I don’t qualify for NHS funding for IVF because my husband has children from a previous marriage. No children, no hysterectomy. So I’m stuck with the pain until I can either afford IVF and conceive or reach an age that is acceptable for me to have a full hysterectomy?

How is this acceptable?

Endometriosis and symptoms in each woman is very different, the efficiency of treatments cannot be measured. There can be no generalised treatment for women with Endometriosis.

Believe it or not- I have had a gynaecologist tell that if I get pregnant it will ‘sort out’ my Endometriosis and pain.

Is it right to pressure a woman into having a baby sooner? Shouldn’t other options be explored?

 When a woman has tried all the pain management options, and the specialist suggests surgery, she will take it, because she trusts the doctor will make the right call.

Is surgery scary? Yes.

Do I have the luxury of being scared? No. I need this surgery because I can’t manage my pain anymore.

Given the ultimatum: Either agree to this treatment (which isn’t guaranteed to work) or suffer with the pain.

Are we compromising our health because there are only limited treatment options?

Endometrial tissue/scarring cannot be seen on an x-ray, ultrasound scan or blood test. Misdiagnosis is often common in a woman’s journey for answers, as symptoms are similar to other health problems. Doctors may end up treating a woman for the wrong illness, e.g. Irritable Bowel Syndrome. There is no way of identifying Endometriosis without laparoscopy. So without this surgery, without the correct diagnosis, a woman could experience years of suffering with pain, heavy periods, fatigue etc.

Although, doctors bear in mind that if the mother has endometriosis, it is likely for the daughter to have it also- it can be hereditary.

by ChronicWriter

10 things you’ll know if you live with Endometriosis

  1. It’s OK to send your spouse on an emergency trip to the chemist, at 11pm.
  2. No, it’s not an alien. It’s just a clot.
  3. It’s OK to eat comfort food and chocolatey treats & not care about weight gain.
  4. You can’t explain your clingy, needy, hormonal outbursts- it’s just another Endo Symptom! 
  5. You will change your outlook on life: “Life’s too short…”
  6. You will get into the habit of picking up Paracetamol & Ibuprofen in every grocery shop.
  7. You will get to know your cycle & body really well, you’ll probs have an app that sings a song when you’re ovulating!
  8. You’ll become the go-to wizard when your female friends have a ‘lady garden’ problem.
  9. Get comfortable talking about ‘awkward’ subjects like: periods, sex, cervical fluid.
  10. Smears/internal examinations don’t get any easier! Despite 100 Drs having a butcher’s at your VJ.

 

*Bonus 11.

It will become obvious that people don’t understand what ‘CHRONIC’ means.

“get well soon” or “oh, you still have that?” or “you don’t look sick”

These comments don’t apply to a chronic condition. I will always have Endometriosis. There is no magic pill. Endometriosis is life altering.

 

BUT WATCH ME KICK-ASS ANYWAY

by ChronicWriter

Side effects of my Chronic illness

  • Spontaneity goes out of the window.
  • There are 84 days out of the year in which I am guaranteed severe pain.
  • Being unable to work full time hours due to chronic fatigue. Having to work part time has a negative impact on my finances. I have had to leave jobs because of my illness, either because I’ve had a lot of time off or that I am physically unable to do the job.
  • I have learnt to accept change.
  • It takes a lot to accept the restrictions caused by my chronic illness.
  • I have received several labels since my Endometriosis became a serious problem- lazy, drug-seeker, attention-seeker, depressive, unreliable. Having to deal with peoples’ prejudices.
  • I know my body.
  • I can’t eat certain foods – it’s great trying to figure out which ones are OK.
  • I get anxiety waiting for my period to start.
  • I am dependent on my husband a lot of the time.
  • I act like a drunk fool when I have to take strong pain relief.
  • Being pushed into contraceptive / hormonal / surgical treatments or deal with the pain.
  • Being pressured to have a baby sooner due to the threat of infertility.
  • Losing friends: There are limits to a person’s willingness to understand.
  • Acknowledging the link between depression & chronic pain.
  • Strain on relationships: spouse, family, friends.
  • Guilt & disappointment.
  • I’ve gotten really good at hiding how I feel, pushing it to the back & concealing my pain.
  • I know my Drs, nurses, A&E staff really well- continuity of care 100%
  • There are times when I hate my body.

fku

by ChronicWriter

A letter to my younger Self

 

Dear 13 year old me,

You’re one of the quiet ones, you prefer books to real life people. You spend a lot of time in your room. This isn’t a bad thing. You still have the friends you grew up with, to them you’re Nerdy Spice. They all shave their legs, have done for a while. They all have boyfriends and stay up till after midnight. Mum won’t even let you near the tweezers and you have an 8 o’clock bedtime.

You’re embarrassed that you have a bed time. When your friends call and Dad tells them you’re in bed, you have to explain it away with a stomach bug the next morning, on the walk to school. But those 8 hours of sleep are a god-send. It gives your body the time to re-boot, time for your hormones to untangle.

Although, now at 25 years old, I crave early nights and those blessed 8 hours are essential. Without them I’m a cranky pants.

Remember when you used to call your friends during that 13th summer, let’s go swimming! No. Why? Because all of your friends had ‘that time of the month’. You were so upset because you didn’t have boobs, or hairy armpits, or a period.

In desperation, you cried to mum, “I’m never going to get my period, I’m going to be the last girl ever to get them!” You felt so left out and mum calmed you down, and said in a quiet voice, “When your periods start, you’ll wish you never got them.”

Listen to mum. She’s like Gandhi. Do not scoff at her rules, jokes, or words of wisdom. Mum knows what she’s talking about & she’s right.

You will hate your periods, boobs get in the way and shaving becomes a full time job but without a pay day.

You will put a lot of pressure on yourself on your journey through secondary school. You will never meet your expectations, but you have to realise that you have already made Mum and Dad so proud. They are proud that your Parents’ Evenings go well, your grades are good and they are grateful they don’t have to worry about you causing trouble on the streets at night. They can trust you to make good choices and to do your best in everything.

Be thankful that Mum and Dad are strict parents and that they love you enough to use rules to mould you into a better person. In another 10 years when you’re living on your own in Northampton, you’ll be glad that Dad taught you about Online Banking and made sure you are street-wise. You’ll be grateful that you spent time babysitting your little brother and sister because it taught you responsibility. Be grateful that Dad taught you about money and that you have to work hard and save for things that you want. Thank Mum for teaching you compassion, for being a shining example of a good-heart.

Over the next few years, you will meet amazing people. Some you will keep with you forever and some you will lose as they go their own way. Life takes everyone in different directions. Learn everything you can from these people, how they influence you and the impact they have on your life. You can learn so much from people.

You will push yourself and set expectation that you are never able to achieve. Learn to love who you are. There are some tough times coming up and you need to be strong.

You will meet bullies, exams, heartbreak, fall-outs with friends and fall-outs with parents. You will move 90miles away from everything you know & everyone you love. Be outgoing, meet people, try new things.

Don’t try to micro-manage everything. It’s OK not to have a plan. Don’t rush into adulthood and force yourself into a life you’re not ready for. Everything doesn’t have to happen right now. Be patient

(No, I haven’t cracked Patience yet, but I’m trying)

Alas, you will have to kiss a few toads before you marry your prince. Open your heart to love. When you find it, it’ll take your breath away. This love will not be an easy one, and you will face some tough situations, but he’s so worth it. He’s exactly right for you, the man you pictured when you read all mum’s Danielle Steel novels. You have found your best friend. He is the other half of your soul and he loves you irrevocably and completely.

When you take a tumble, be it due to illness or lack of judgement, remember that anything worth having is never easy. Have the conviction to stand back up.

You will experience hurt and pain and defeat and there is no avoiding this, but know that you are a strong. No matter how alone you may feel in those dark days, know that people love you. They will shoulder this hurt with you and it is OK to let them for it is too heavy for you to carry alone. Acknowledge this early, before it breaks you.

Do not let sadness bind your personality and drain you but hold fast to who you are. Do not let pain change you, try and stay soft. Stand strong against the regret and bitterness that will taint your caring nature. Keep striving to be a good person.

Your sensitivity is a gift and it allows you to connect with people on an emotional level. You have empathy and understanding, which people will lean on. Do not be afraid to cry, crying is not a sign of weakness. It shows that you care enough about something and you’re willing to break trying to get it.

Be confident enough to laugh at yourself. It’s OK to be weird.

Never apologise for being who you are. Stay cool.

From your 25 year old Self   xo

baby.jpg

 

 

by ChronicWriter

What do I pack for Surgery?

So you’re booked in for surgery, do you need to take anything?

Normally, a straight-forward laparoscopy would be done as a day-case.

However, there is always a chance you may have to stay overnight. Be like a boy scout, be prepared. Just-in-case. You won’t want to be without your comforts if an extended stay should happen.

 

New items I’ll buy closer to the operation date:

  • Buy new pyjamas – a really comfy, bright coloured, awesome pyjama set. Make sure it’s loosing fitting and the bottoms have a soft elastic waist.
  • New pyjamas need new slippers – try and get a pair with a firm rubber sole with grips as you’ll be expected to wear slippers down to the operating theatre/prep room.

 

**On the day – wear comfortable clothes. Plan what clothes you’ll be travelling home in, trousers needs to be loose fitting, soft waistband.**

 

You’ll need:

  • Any paperwork from the hospital that is relevant to the surgery
  • Any regular medications
  • PJs, slippers & dressing gown.
  • A few pairs of Pants – I don’t mean the mini lace pair or the Ann Summers special – I mean 100% cotton briefs from Marks & Sparks. Full coverage, comfy, not tight.
  • Socks
  • Clean t-shirt – loose fitting
  • Soft crop top / wireless bra
  • Baby wipes/Face wipes – all make-up has to be taken off for the operation.
  • Shower gel, toothbrush/toothpaste, deodorant, brush – the usual stuff
  • A few Tampax/pads – just in case.
  • Heat pad
  • Headphones, phone charger, book/kindle/magazine
  • Bottle of water/drink – for after the surgery

 

Also, be aware – you will not be allowed to have jewellery on during the surgery. If you prefer to keep your wedding ring on, the nurse might have to put a plaster/surgical tape around it.