Sometimes our memories aren’t helpful.
Here I am; 3 years ago, on my way to a work’s Christmas party.
2 stone lighter, I was on 3x LESS tramadol than I am now and halfway through a life-altering break up having been dumped unceremoniously (I also met my husband at this time...but didn’t know it yet)
I saw this this morning and cried.
I have calmed down but I am bruised by this image. I feel like such a failure, compared to this girl. She looks like a goddess to me and I remember feeling like one; a kick ass Anglo-Saxon goddess triumphing over tramadol, heart break and weight gain.
And now I feel like a loser: on more medicine, heavier and 3 years’ older.
Hi. I love my husband but the way he just doesn’t get period pains OR ovary pain is not on. He never gets them. Never. Considering charging him ovary-rent because he will one day make use of these things and want a baby and to be honest it’s only fair he pay up front in instalments.
This has been a TED talk.
“What’s in a name?”.
This snap by @contemporarypic
is one I cherish. In this moment I am promising to remember them and their names. I am promising to honour the parts of them that will run through my children’s veins.
A wedding day, in its very nature, is a day of goodbyes and hellos. I said goodbye to my family name- the name I carried with me to all my important moments, it defined me and shaped who I was. I carried it and my ancestors right to the last moment, all the way up the aisle and to the altar. It was my father’s name- and because I lost him at 15, I felt like I was handing over the last part of him I had.
And it was a joyous welcoming into the one family we all choose: our spouse’s. From Justice to Kirk. (Remember brides to be, a wedding can be as personal as you like)
sufferers you are more than your diagnosis.
You have a name.
CHRONIC ILLNESS & EXERCISE
Guys, how do you cope/fit in/ use exercise and still respect your limits?
I’m new to this; I’m attempting to ease myself in, use the natural #endorphins
that comes from physical activity to help relieve the pain of endometriosis and also #drugwithdrawal
But I also know on my BAD days I’m not even getting out of bed let alone onto a treadmill.
My husband has just bought this for me for Christmas because I like to walk. So I won’t be running and it won’t be for weight loss (though that’s a welcome side effect if it comes) and I’m wondering how others build in and cope with the pressure from doctors/ social media/ your own sense of wanting to exercise.
Annual reminder that you as #chronicillness
sufferers do NOT have to do what other people do this holiday season.
🎄You don’t have to go to the work Christmas party.
🎄You don’t have to go skating.
🎄You don’t have to drink mulled wine if it messes with your meds or your mood.
🎄You don’t have to face the Christmas markets.
🎄You don’t have to face the Christmas shopping.
🎄You don’t have to pretend you’re happy.
🎄You can batten down the hatches, watch films, send texts, and gifts and do online shopping.
🎄❤️Do not expect the things of yourself that others do of themselves.❤️🎄
That being said; a little movement can go a long way, and don’t be afraid to ask for help.
I saw the doctor on Thursday
Her first words were:
“we’ve messed up your tramadol, haven’t we?”
I was gobsmacked. She was referring of course to the fact that in September without explanation or knowing I was already weaning off on my own, they cut my monthly dose from 100 to 50.
Her explanation? They are incentivised by the government to stop and reduce prescriptions. So, they cut peoples’ doses....and wait to see if they complain.
Speechless because 1) the withdrawal is paralysing + agonising- so it’s cruel and horrible 2) the people most vulnerable are the least likely to complain and 3) people will find a way of getting hold of something to stop withdrawal. And that means street drugs.
She accepted this and is raising it as a serious medical event at the partner’s council- this is how they would treat something like misprespcribing a dangerous drug or mixing up a dose and hurting someone. This means the process will change from now on- they will no longer cut doses and hope for the best. She also ensured that PRINTED on my label is “required for severe endometriosis” so even if someone doesn’t go hunting for my medical notes they will see why I take this.
I explained that whilst I was livid about this, I actually was in the midst of weaning down. But that I had been having scary thoughts that I knew weren’t mine. That at times I didn’t want to live anymore. That I’d nearly set fire to my life; quit my job and driven somewhere to be alone.
Her first reaction was “this is terrible. You cannot survive this withdrawal and you need to slow down BUT more importantly what about the endometriosis”
I have to be honest I was expecting an unapologetic doctor who would latch onto my own desire to come off as another way of hitting their target. Instead she does not see why I would come off the only pain medication that makes life bearable.
She knows I have tried amitriptyline, gabapentin, Naproxen and codeine. I am allergic to the last two.
I asked “so as far as you’re concerned you’d prescribe this forever?”
She said yes.
She also said “I’m worried about you as a risk. You need to promise to go up a dose”
So that’s where I am. Limbo.
•🦂 S T I N G 🦂•
The thing about chronic pain is that it makes you IRRITABLE as FUCK. I don’t have any time for softness because I’m busy. Being in pain.
I am sorry therefore, that I didn’t smile as I walked past you, my uterus is having a thrash metal rave in my pelvis and I’m considering how badly I really want to give my husband kids or if I can just rip it out right here right now.
And I am sorry I haven’t texted you back. The tramadol my doctor told me to “keep taking” (6 years ago) is now so deep in my neurotransmitters that I can’t tell where it ends and my personality begins.
And I AM sorry that I keep snapping at you; but my inner dialogue (which continuously tells me I can’t do this) is really loud today....and I have to speak over it to talk to you...
Reasons raising awareness of #invisibleillness
is so VITAL. They HIDE. They hide behind “normal” healthy looking faces.
The idea that a differently-abled person looks a certain way is so 1964. It’s 2018. Sadly I’ve noticed that some of the same people who post quotes about “everyone having their own battles” are still not familiar with the idea that chronic illnesses exist behind the scenes.
For example, I walked out of a disabled toilet yesterday to what can only be described as a filthy look. I only use them rarely when I really need to because I AM conscious that wheelchair users or those with mobility issues are of a higher priority than me, but sometimes the effects of #endometriosis
can be profound and require some more space and privacy and time than cubicle toilets can offer.
And it’s not just whatever illnesses or conditions someone is facing. It’s the associated medicine and treatments they may be taking.
Tramadol has arguably had an even more profound effect on my body and abilities than the #endo
I was prescribed it for...and that’s true of a number of conditions.
The photo above is my face on a day when I had an incredibly bad pain day. I had my make up done and went to my birthday party. But I felt like hell and used a disabled toilet. Please don’t judge someone if they walk out of a disabled toilet. Ok, some people use them because they want to, so what? What’s worse? Not judging someone who deserves to be judged or judging someone who doesn’t? not your monkeys, not your circus, and absolutely none of your business.
This doctors appointment needs to hurry up before I do something stupid like quit my job and legally change my name to Boris McDaisy
I am in agony
No I am not pregnant.
I have #endometriosis
and it’s horrendous today.
How am I meant to not take the painkillers for this? Tramadol is the only thing that helps.
I have made an appointment with my doctor to discuss help coming off tramadol.
After 6 years taking this drug I’ve done as much as I can alone.
I went to get my script in Sept and without warning they had HALVED my dose. I need to take this up with them and advocate for people who aren’t as strong and confident as I am. It’s absolutely inexcusable. We aren’t America, there is no opioid crisis yet, and it’s irresponsible and dangerous to do this to a person.
tramadol dependance aside, I take this medicine for a reason, and I’ve had an absolutely horrendous reemergence of #endometriosis
symptoms. Which should also be their concern.
Honestly even if they hadn’t halved my dose, I’d have made this appointment.
I’ve spent the last three weeks in what can only be described as a void. A complete indifferent and dangerous void. I would have even welcomed feeling sad, because sadness is an emotion. I felt absolute apathy, I didn’t want to live, I didn’t want to exist. I hated my life and couldn’t tell you why.
I spent three weeks like that until I realised I’d have to go back up to half a tablet and stabilise and get help.
I’m not a doctor. I’m not a pharmacist or an addiction scientist. I’ve done this alone all while starting a new full time job and driving two hours to it each way. I can’t figure this out alone anymore; I’m not an objective party. And I’m scared.
Endometriosis. 💛 The silent disease.
Today has been utterly excruciating.
I've knocked back enough codeine, tramadol and zapain to take down an elephant.
Heat pads and hot water bottles just don't cut it.
Sitting, walking and adulting in general is exhausting due to the constant chronic pain.
I'm experiencing the worst endo belly and feel like my I am being hacked to pieces from the inside out.
I'm now in bed trying to find a position comfortable enough that doesn't make my pelvis scream in agony or my lower back spasm with pain.
Over the years, you seem to get used to being constantly in pain.
Sadly, the pain never gets better.
Can I do anything about it.
I just have to suck it up.
There isn't a cure for endo. I have bad days and I have really shittily bad days.. I'm too tired to even cry.
So now, I am going to resume the foetal position and hope that I can get some sleep.
Tomorrow is a new day.
#endosufferer #endohasnocure #endobelly #endosucks #endoisabitch #endometriosis #silentsuffering #silentdisease #endometriosisawareness #endowarrior #suckitupprincess #fuckyouendo
After my third endometriosis surgery in six months, coming home to a beautiful delivery helps me see the tiny piece of blue sky through all the dark clouds... 💛💛
Such true words, not just for an #endosufferer
but for Everyone.
These words have resonated with me this last week or so and they’re truly sticking.
You truly will only ever be as fortunate as you believe you are.
Some already have everything they’ve ever wanted, have the best health with nothing wrong and still they will believe they aren’t fortunate.
There’s those on their death beds with only a minute left to live and they may believe they are the most fortunate person in the whole world 🌻✨
#endonz #endometriosisnz #theendokiwi
"The best way to predict the future is to create it..."
I literally woke up one day, two years ago now, thinking I had appendicitis. I drove myself to the ER and it was deemed internal bleeding from a proposed ruptured cyst. It happened countless more times throughout the years 2016-2017, where the nurses at the ER knew me by name. I finally got a diagnosis after a complete fucking run-around and tens of thousands of dollars in medical scans, surgeries, ultrasounds, testing, doctors, food testing, GI docs, etc etc etc. a laparoscopy determines my second worst nightmare - Endometriosis (first was ovarian cancer). It’s still hard for me to fathom, to this day, that there is no cure. That my symptoms have no known or obvious triggers. That most of the month i feel like total shit. That I’d be grateful for a remote job where i didn’t have to interact within a busy business setting for work. That I’d be unsure if i could have another baby someday. That my joints hurt, all the time. I could go on and on, but we all know one thing - ENDO SUCKS. And we must stay strong, educated, empowered, and resilient 🙌🏽🙌🏽🙌🏽
“Although this is true I wonder if it's something I'll ever come to terms with❓ Do any other #endosufferer
have trouble accepting this?? After @sineadsmythe
recent post and previous discussions with a few of you amazing women iv realised how true the saying is, ‘Endometriosis is like a cancer that won't kill you, but you will live with *forever*. It has no cure’..........and this is so hard to actually comprehend.”
#1in10 #endometriosis #endometriosisawareness #endometriosissucks #endometriosissupport #endometriosissurgery #adenomyosis #infertility #sefondaryinfertility #ivf #adenomyosissupport #follow #followme #ig #instapic #instadaily #igdaily #life #share #support #love #girl #blog #chronicillness #chronicpain #chronicfatigue #medicalcannabis #writersofinstagram
3 part update.
Sorry, I do cry.
But at least I have my #yellowforendo
coat to distract you.
My little prin, Lilly is channelling her mama tonight.
I’m so tired, and I feel sad today.
I’ve been alone all day in the house and it’s not ideal when facing withdrawal. The walls close in. I have felt so under the weather, my legs have twitched and my head has pounded. I don’t think it helps that I’m coming up to my due on date and Sam has been away 4 days. He left Sunday night. But he will be home by the time I get home from work tomorrow.
You guys I literally dread bed times since the lower dose.
have well and truly dawned.
I spend all night trying to get comfy and wake up like I’ve run a marathon (because my legs have😂🤦🏻♀️)
I find myself driving home wondering what would happen if I quit my job, if I just decided to go to bed for 6 months. I watch other people at work, or out, and wonder how they do it.
I wonder how I’m going to do it.
Tramadol is part #SSRI
so I KNOW logically that this is happening because I’m forcing my brain to use different serotonin and chemical methods and pathways after 6 YEARS on tramadol, but that doesn’t mean it doesn’t feel real. A diabetic understands logically that the pancreas isn’t behaving, they’ll still hypo/hyper out.
🖤 G A M E • F A C E 🖤
The game face was on yesterday at my amazing friends’ wedding. Both the bride and groom are close friends of mine so it was extra special.
But doing it on 1/3 dose was hard and I’d like to thank both @limecrimemakeup
for making it look me look like a normal person.
I know so many #endosisters
will be used to playing the game-face game. So let’s get below the make up.
Few things to know about me:
- I draw on my eyebrows with liquid eyeliner in dark brown shade. Lasts longer and you don’t need to spend a bomb on @anastasiabeverlyhills
-I’ve had lip fillers and i love them. I will happily have them for the rest of my life
- I smashed my coccyx ten years ago and driving long distances sucks. My husband smashed his a few months ago so now we’re the broken bottom twins
- I take paracetamol and ibuprofen every 4 hours and have omperazole to protect my tummy
- I have a degree from Durham University, and post graduate qualifications in financial risk accounting.
Tell me things about you, even if just by DM.
GP- not mine some random- reviews my file, decides I’ve had one conversation 12m ago about considering coming off tramadol, and halves my allowed dose from 100 a month to 50 every 25 days.
Husband goes to collect last month and I figured I’d sort it out once back from Spain.
Have just gone to sort it out and found out the above.
To say I was angry is an understatement.
I explained as calmly as I could that this is why people then BUY HEROINE because their under-trained GP who probably had one lecture in the chemical effects of opioid withdrawal 10+ years ago and has their own personal agenda to pursue, randomly and with no consultation, HALVES and then some, a patients dose. I explained it was lucky I’m an educated and confident person or I’d currently be dialling up dealers to buy the FIFTY pills I’ve been robbed of.
As if you do this? Just randomly halve a persons dose after 6 years. Btw they did this not knowing I was doing this journey so as far as they knew when they made that decision I was still on 8 a day!!! Can you imagine?
Anyways this is a visual representation of the cut down.
I’ve gone from the one on the left every 6 hours, to the one on the right every 6-8 hours. Sometimes 10.
Gotta make it to midnight before I can take 17mg dose.
For the last two days I have been taking 17mg every 6-10 hours.
Thats a third of a tablet rather than half😬
So I have cut down.🤫
There, I didn’t want to say it in case I failed but I have.
I’m trying to keep myself distracted by watching videos of the Mediterranean from when I was there last month.
After these vows he promised me #hotwaterbottles
If your husband/wife/boyfriend/girlfriend/partner doesn’t love the shit out of your broken body then they don’t deserve it when it’s on point, naked and ready for some action.
With great progress comes great strife.
I’ve been able to stretch my doses but with that I’ve noticed a steep drop in my positivity, and body image. I wish I knew why the withdrawal is effecting me in this way. I’m glad that I’ve been able to drop some despite a brand new and rather stressful job
THIS IS NOT A DRILL
I have not taken tramadol since 1pm and so far...no withdrawal.
I am 💯 sure this will be a delayed reaction and it will rock up soon enough.....But till then, here I am chilling with my Lilly-Fox. She’s half fox half meerkat
🦊 🦊 🦊 🦊
🚨 PITY POST ALERT 🚨
One of the hardest parts of this journey is the weight gain.
Ive gained about a stone and a half since decreasing tramadol and that’s due to a number of things:
- withdrawal causing my body to seek energy from any source it can and sending out hunger signals
- reduced energy and therefore activity. I’m burning less calories due to the lethargy.
- there is some research that states any level of change to serotonin can change how your body burns fat and uses sugars
Tbh when you already feel low and sad and annoyed the last thing you need is to look in the mirror and not like what you see.
It’s especially hard when your clothes stop fitting.
I’m trying to combat the above by eating healthier but do you know how shit it is to DIET and WITHDRAW??? It’s crap. And so I often fall off the wagon and grab the closest sugar filled energy hit I can. I’m trying but it’s making me upset.
I’m sorry I’ve been absent and worried some people.
This week has been hell.
And I have a confession....I’ve taken an extra half in the day to get through. When I’ve needed it; some days I haven’t.
I’ve found it so hard to admit this, and also to admit that I’ve driven home most days hoping this feeling ends some time.
I never experienced this last time I weaned down.
I spent all this week wanting to be someone else.
How many #endometriosis
sufferers and other #spoonie
guys can relate to hiding in the toilet? Waiting for waves of pain or nausea or panic to pass?
🐍 Slytherin to bed after my first day back at work!! 🐍
Thank you so much for the amazing messages and comments they really gave me strength today and for my friends who called or texted.
I have to wait till midnight till my next dose and I’ve noticed being busier has helped but that the lack of energy means that if I didn’t have to do these tasks I absolutely would not so....it’s kind of a catch 22.
I keep getting waves of “god I’ve forgotten to....” but I haven’t it’s just the withdrawal and not being used to needing to remember things and having to be places/awake.
Anyone facing the first few days of withdrawal, please do not try and work. I am only at work now after 5 weeks off and a wean down.
First day at work!!
FIRST DAY AT WORK!!
I’m back to work tomorrow in a big brand new job and I am totally overwhelmed!!
What an amazing evening!
I turned 30 with my friends in Spain. And then celebrated with my angels in Bristol!!
As I’ve got older and everyone is so busy, I think just having all the people you love in one room is the best present. It never happens does it? It takes such effort.
I pushed the #tramadolwitndrawal
way too hard last night and then had 3 glasses of prosecco, and was drunk.
I don’t recommend that. I was up all night with a bad stomach from even worse withdrawal and because I was still drunk I wouldn’t let myself take tramadol to alleviate it.
⚠️PITY PARTY WARNING⚠️
Wedding and endo.
Tramadol gets its fair share of stick. But without it I couldn’t have done job interviews, holidays, operations, and this....my wedding day.
In the car on the way to the ceremony I was in my first dress, it had long sleeves. It was 30 degrees and the pain in my stomach was horrendous. I thought I was going to have an accident or be sick on the side of the road. I could not believe this was happening to me on the way to my WEDDING😱
My mum said I went as white as my dress and a thin glaze of sweat threatened the two hour make up look on my face! It was so horrible. In fairness, it was ovulation day so...🔥 You know what I did? In the back of the vintage Sunbeam. With only my mum, and the tiniest sip of water in a bottle she’d nearly finished, I took a tramadol.
And by the time I reached the church I was ok. Not great. But not in agony.
And later, after two more, I was able to dance with my new husband and all my friends.
So as much as I hate having to come off it and the price it takes to take it long term, for me having tramadol to help me over the last 5 years was worth it. You just have to pay the piper....and a Lannister always pays his debts.
I HAVE A COLD
I did warn you it would be back to grey tracksuits and no make up.
I’ve spent the day ignoring the horrible #restlesslegs
with my pups.
I’ve decided to take the dose down too.
I’m on less than half every 6 hours. Just to make it worse you know?
Feeling so impatient and scared. I start work again on Monday and I was meant to be on a much lower dose than I am right now.
I know I’ve cut down to a 1/4 of what I was on a day but still...
🏡 H O M E 🏡
That journey home was horrendous.
Leave for airport at 9pm
Catch flight at 23.50
Land in England 1.20am (but 2.20am to us, because UK an hour behind Spain)
Wait till 2.50am UK time (feels like 3.50am to us!) for BUS to temple meads because no Uber taxis.
Get to Temple Meads at 3.30am and wait on Uber to take us from there home. Get home at 4.00am.
Feels like 5am as Spain an hour ahead.
Stay up with puppies who are so excited they can’t sleep.
Get to sleep at 5.30am (6.30am).
ONE MASSIVE MERCY. My first #tramadolfree #endometriosis
period arrived this morning! Not on holiday and not in transit. This is gonna be fun.
There’s always one🤦🏻♀️
Firstly, addiction and physical dependence are two sides of the same coin
Secondly you can have one without the other or a varying mixture.
Physical dependence is very different to psychological addiction but they often walk hand in hand and so idiots like the one who got this response cannot separate the two.
There is NO shame in admitting you have an addiction. Having spoken at length with my doctor I am confident I am not addicted to tramadol, I have a dependency. Cut a long story short, it stems from the fact that I have never had a high or taken the drug to get high, have never taken it due to underlying social or psychological trauma and crucially have never taken over the prescribed dose. What I Do have is a physiological adaptation in chemicals and receptors due to the length of time I’ve introduced tramadol and its chemicals into my body.
My dad was an alcoholic and I have campaigned tirelessly to make sure the stigma is removed. He committed suicide when I was 15 having tried to mask his bipolar with drugs and alcohol. BUT that doesn’t mean I should lie about what I’m facing. Addicts have my utmost respect I cannot imagine how much harder this would be if I had to contend with the underlying desire to take drugs to kill psychological pain or to band aid some other issue
Happy to discuss this further but please use polite and non aggressive language or like this clown you’ll be told to go fuck yourself and be blocked
♥️ BFFs ♥️
I’ve had the best week with the best people.
Coming off any medicine is hard & #opiatewithdrawal
is truly one of the hardest things I’ve dealt with, after only grief and heartbreak. It feels like both actually. I was scared to fly out and potentially ruin a holiday and 30th by being too poorly. But it’s been an amazing 8 days.
Spending my last few hours on the beach 🏝 swimming in the sea and catching some rays.
💕• 3️⃣0️⃣ • 💕
My little chubby legs though 😂 and #endobelly
🍊 SPANISH•ORANGE 🍊
Last night....I had a glass of CHAMPAGNE 🥂🙌🏻 because the dose I’m now on is minimal enough to allow for a glass of alcohol.
BUT it did immediately burn through the tramadol and put me into CT.
Take the good with the bad.
30 is fun so far!
Back to no makeup and grey trackies for you followers as of tomorrow, you’ve been spoilt the last week, this is not what withdrawal actually looks like.
💕B I R T H D A Y•S E L F I E💕
Thank you for all the messages! I’ve found the last few days incredibly difficult. The half dose has somehow regressed and now takes much longer to make me feel ok, and wears off in an hour or two. Leaving me in a horrid place for 4 hrs whilst I wait for the next dose.
I am trying to take this as a positive. That it’s actually working now and I’m putting my body under pressure which will force it to amend to the new dose.
2 hours ago I was in hell. As you can see from my previous post.
And now I’m fine. Because I took my allotted dose. It’s riding horrid waves just on the cusp and nearly being wiped out. And then being wiped out and starting again.
I’m done today. I’ve tried really hard to keep positive but I’m done today. I just feel so upset and let down and want off this ride. I’ve lost all my drive for it, I just want it to be over.
I’m supposed to be on holiday, I turn 30 tomorrow, I’m back at work a week Monday and I just, I want to get under a duvet and never get back out. I’ve never felt this low. I can’t do this, I can’t.
U P D A T E
without prescription painkillers is not ideal.
NSAIDs are so good but sometimes it goes beyond #ibuprofen
Hi I’m #endobelly
and I’m here to let you know you ain’t shit, sister.
This is going to be so fun on a lower dose of tramadol.
Hurry up period, you life-ruining snake.
♥️ G R A T I T U D E ♥️
This is my husband and he’s the handsomest😍
His mottos are “whatever you want, Miss” (even though I am now a Mrs) and “I can always go back out and get you some” and “you sleep” and “don’t apologise, angel”
Which basically makes him a spoonie’s wet dream.
All power to the husbands, and wives and boyfriends and girlfriends and friends and colleagues and family and strangers who look after us.
♥️🌊 W A V E S 🌊♥️
Keep thinking I’m a normal girl out in a shopping centre and it’s all good, but then I have to sit down because the sweats get me and I want to jump out of the nearest window with sadness🤦🏻♀️
I know it’s just the chemical withdrawal doing its thing but it’s still pretty horrid.
It does come in waves though so I know if I can ride it out it will pass.
Bit nervous about my first period without the tramadol to help me bear the pain. It’s due any second so I’m sure that will be a merry-go-round of fun.