“So what do you do?”

I’m an introvert. Meeting new people is hard and awkward, even if I enjoy it in the end. Part of the whole problem is the dreaded question, “what do you do?”. It’s a pain in the arse. Because the answer is “I sit on my arse drinking coffee and crocheting. Or sleeping.”, and what kind of answer is that. At least, that sentiment is what goes through my head. I know my answer is perfectly valid, and yet it leaves me feeling lacking. That’s purely an internalized issue. My perfectionist soul never planned to be unable to manage my housework, and so not having an occupation to report in answer to any questioning is felt like a personal shame. I’m getting better at it. I used to bluster and come out with justifications and explanations, whereas now I manage to smile back and say, “Oh I’m long term sick”, without too much internal squirmimg, steeling myself for the “aww”, “ahh” and “ohh”s that follow such statements.

The fact is that, although improving, society is not conformatable with disability, so being informed it is “all” someone “does”, some people just can’t process. People are fine with people like Paraolypians because they “do” something apart from being disabled. I’m lucky to be surrounded by people who love and value me for who I am, inclusive of my disabilities. But when meeting new people, you never know what card you’ll draw.

At the moment I’m dealing with an issue to my dominant arm, which is preventing me crocheting. That needed bold letters naturally. I managed a bit of crochet the other day only for it to ger worse, and have now been told to rest it completely. I feel at a loss! It’s awful. I’m sat just twiddling my thumbs. As well as being physically put out, mentally I am all wobbly. Crochet isn’t just my hobby; at times it feels like all I achieve. Whether this is healthy or logical, I’m unsure, but feelings aren’t always thus. Far better to accept a feeling than fight it, anyway. So without my crochet hook in hand, I don’t know quite what to do with myself.

Crafting is such a major part of my identity, that to be restricted feels almost worse than being limited with leaving the house. Because of course my same arm is the steerimg arm fot my chair. Crochet is as natural to me as breathing, and seeing as they are not.sure why this issue is happening with my arm, orr when it will go down, I feel scared. I know there is more to me than my crafting, whether it is someone else asking, or I am examining myself, and yet to be without it for however long it takes is a cruel punishment.

That said, it does mean I also can’t do the washing up. Silver linings.

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Survival mode

I’m in either flare or relapse mode and this means making some sacrifices. This will be a brutally honest post because the reality of these modes, for whoever is suffering them, is brutal. Utterl brutal and cruel and punishing and horrible.

I changed my morphine patch early on Sunday to have a long hot bath (you can’t raise your body temperature too much when wearing a patch as it cab release too much of the drug into your system). It was lovely ti relax in the hot water, watching TV on my laptop, face mask on and attempting to do my skin some good. Sounds very pleasant, and whilst it was, the reality – the brutal bit – is that I hadn’t had a shower or bath for around ten days prior. It feels grim to admit it, but equally there was no physical way I could have managed either before I did so. Having long hair is an advantage at these times; one exertion of energy to braid it, and you don’t need to do anything else for a few days. Never going to win a fashion award, but like this is titled; survival mode.

Yesterday I slept half the day away. I napped in the morning, then fell asleep by accident around midday, and went to bed in the afternoon. Then it was an early night with some TV in bed together. We managed a family trip to the park, with me in my chair, for a short while. Getting out of my chair with my stick – because of the risk of getting stuck in the mud – is something I am paying for massively today. It was a lovely time and I’m so glad we went; I haven’t been the parent I want to be whilst I’ve been so ill.

That’s always a hard standard to keep. Being disabled your standards shift – not decrease, but move around what you are working with – and then when you are having a period of ill health it’s even harder to achieve your goals. LittleCrafter has limits and obligations set to him that childten of healthy parents don’t, and I fight against myself every day to make sure his childhood is as normal as possible… simply with a wheelchair involved.

Sleeping so much should make me feel rested but of course it doesn’t. I’m just more tired than I was before. Someone once asked me “why sleep then ?” and the answer is I just don’t have a choice. I can fight to stay awake for ao long and then collapse at breaking point. I also think that my body waits until it is safe to fall apart – like yesterday when my husband was home – and that cycle isn’t healthy. With changes we are trying to put in place hopefully that will change. We will see.

One of yhe things that suffers the most when I am in survival mode is my mental health. The isolation and loneliness of being stuck in bed, or at least in the house, is something I cannot put into words fully. It cannot be described, only experienced. Being unable to socialise in any way, even saying please and thank you to a server in a shop, nags away at your sense of self.

All of that said, I am a lot more at peace with it than I was. It’s taken a lot of time, meditation and quietness mentally, to reach this point, and sometimes i still slip up and feel alone, but my goodness the steps forward I have taken!

Survival mode means water instead of coffee. It means naps. It means extra meds. It means resting after the simplest of things. It means giving up on things that you want and need to do, for yourself and others, until possibly weeks later. It means living on toast if you can stand to eat at all, or maybe takeaways because therr is no other choice. It’s rewatching TV time and again because you didn’t process what was happening. It’s feeling so cripplingly alone, with nothing to be done about it.

It’s not a horribly evil thing. It’s just a reality for me and millions of others around the world. Survival mode; what a bastard.

Good medical care should be standard, not exceptional

A few weeks ago, I put a request on my personal facebook asking if someone would be able to attend a medical appointment with me. I was feeling stressed, having had a pretty ‘blah’ appointment with the doctor previously, and earlier awful ones in the department. The stress continued even after a friend said she would accompany me, just because of sheer anxiety. I feel like I should add here that it was a gyne appointment, which is never fun for any woman, and even less so if you have gynecological conditions.

Fast forward to today and even with my friend (another friend, poor thing was poorly) sat with me in the cafe before hand, and I was so panicked. I went through and highlighted the extra evidence I had asked for from my GP to back me up, making sure I had a series of bullet points if I needed them; by going on Zoladex I had gone against his previous advice, which had been to focus on my fertility.

As it was, he was entirely supportive of my decision, was genuinely pleased it was helping, and completely agreed with my statement that any laparoscopy needed to wait for at least six months – three more months on Zoladex, three months following that for things to be awful again, and so more evident during surgery.

Afterwards in Starbucks my friend and I were discussing how nice he had been and then the discussion shifted somewhat, hitting on the fact that him being nice shouldn’t be a surprise. It shouldn’t be so remarkable that a doctor cares. It shouldn’t be unusual that he wanted to help. It should be standard. There are some awful human beings out there, and of course a portion of them are going to be in the medical field, but that doesn’t make it okay to treat people like crap, to forget that these are literally their LIVES you are playing with, to accept pain as something that is fine and doesn’t need investigating, to BLAME the person for their suffering, to act like they are being DIFFICULT or BORING to ask for help. There are so many professionals who get off on the power dynamic, and have forgotten that at the core of medical treatment needs to be the word ‘care’. Four little letters. Not a huge amount to ask. Most patients are reasonable, and do not expect a magic wand to be waved. But to be treated with respect, politeness and patience…. Surely, that isn’t any more than we would want to be treated with as a human being?

I have been ill for over a decade now. I have some exceedingly awesome doctors who make all the difference to my life. Some doctors and medical professionals have made wonderful things happen, and I do try to make sure that praise gets back to these individuals so they know how wonderful they are. But sadly the other ones that really stay with you are the ones that cause damage. The ones that illegally section you. The ones who tell you that you’re in pain because of your sexual abuse. The ones who tell you that if you lost weight the world would change completely.

Having such a narrow view on the world doesn’t help yourself or your patients. The world isn’t black and white for goodness sakes. It’s a bright, vivid, shiny rainbow! There are bursts of colour, and sparkles, and fireworks. And whilst I’m sure there is an element of bitter cynicism to encounters after fifteen long hard years, that is when you need to shift either your attitude, or your job.

It shouldn’t be breath taking when you are treated nicely by a doctor or nurse. It should be routine. If we were all just a bit bloody nicer to each other in general, wouldn’t the world be so much more bearable?

PTSD and Insomnia

Eugh. I’m awake. Again.

I haven’t really slept tonight, and I bloody needed to. After laying awake for hours not wanting to wake my best friend asleep next to me, I gave up and came down to the restaurant for a coffee with my crochet and my Kindle.

A slight tangent here; I love my Kindle. I’m a massive book lover and nothing will ever replace the feel of actual books in my hands, but being disabled, yet even without that, the ability to carry around hundreds of books with one item is almost magical. I love my Kindle for the options it gives me and the freedom it represents. I had stopped taking books out with me as the weight of it was too much to take. So having a Kindle gave me the ability to read wherever I wanted again. Maybe for this reason, it always disappoints me when people turn their noses up at ereaders. Worth thinking of it fromba different angle.

Anyway. I gave up at 3.30am and came to find out if coffee was an option. I was told it coupd be but it would be fromba machine; fine with me at this point as I just need bloody coffee. So I opted for a mocha, something I rarely do, and I do have to say it wasn’t as awful as some coffee I’ve had in my life. As you read that sentence, please remember I am a self confessed coffee snob and I don’t feel bad about it.

I had a horrible interaction with a security guard not long after I arrived in London today, and there is every possibility that is why I am unable to sleep. I won’t bore you all with the story, but surfice to say he was in the wrong, very much so, the manager agreed with this, and he will be in trouble with his manager (sub contracted staff). On top of being a horrible experience, it was incredibly triggering, and my PTSD wenr into over drive following the interaction. I cannot fault the manager who comforted me and was completely lovely, but it is another day, another reminder, that I am not ‘normal’.

I joke about it normally, and say how normal is over rated, but the blunt truth is I am odd because of the rewiring of my brain. Obviously with trauma therapy, I’m doing what can be done, but there is a lot that simply can’t. I will be like this forever.

Insomnia is a slippery bastard. Just as you think you have sleeping sorted, there comes another night of being wide awake. And there’s no point fighting ir because that just makes it growl and keep you up for longer. I’ve had about 25 minutes sleep.

It’s not a fun way to live. Generally my insomnia is better controlled than it used to me. Frankly a part of me is always surprised when it can push through the cocktail of meds. The other part of me is just fruatrated to see it again.

PTSD makes you relive the worst things in your life. And then it goes further, expanding out, looking for triggers to those awful things, however distant; colours, smells, words, tones of voice. In the case of today it was a horrible aggressive attitude and a man getting very close to me with a sneer on his face. Too many memories, too much danger. I did manage to stand up for myself, but apparently at the cost of a night’s sleep.

PTSD and insomnia often go hand in hand and it really is no surprise when you think about it. To sleep you have to feel comfortable, mentally and physically, and if you feel unsafe, that isn’t comfortable. PTSD thrives on keeping you feeling unsafe.

The bastard.

A Magical Adventure On Wheels

Oh. My. Dumbledore.

Yesterday I went with a friend to see the exhibition in London about the history of Harry Potter…. and of magic. “Harry Potter: A History of Magic” gives you the experience and insight not only to the magical world that J. K. Rowling has created, but also to the inspirations she had, and the beliefs in magic stretching back hundred of years, including a cauldron that had been thrown into the river Thames over two thousand years ago.

There were texts showing an invisibility spell, an alchemists scroll with the instructions to make the Philosopher’s Stone (although of course as all Potterheads will know, the only recent creators are Nicholas Flammel and Albus (Percival Wulfric Brian) Dumbledore, and as such these should be our point of reference now), stunning maps of the stars, crystal balls, and sheets upon sheets of stunning works, including one by Da Vinci himself, which was so beautiful I almost sobbed. There were early plans for the Potter books, drawings by J. K. Rowling, illustrative paintings and drawings by Jim Kay.

I can’t begin to list the amazing things I saw yesterday. It was moving in so many ways. The wonders of the crossover between science and religion, the historic change from original nature based wise crones to the traditional ‘witch’ image we have today, the real remains of 500 year old plants, the true magic of wisdom of sages…. I could have spent at least three weeks in there, reading everything time and again, and it never be too much.

I’m a proud geek. I taught myself the basics of both Latin and Egyptian hieroglyphics just ‘because’. I dare not count the exact number of books I own, and my ‘to read’ pile never gets shorter. I have cried over the thought I will never be able to read all the books I want to before I die. It’s probably obviously to any Potter fans reading this that I am indeed a Ravenclaw. Learning new things is possibly my favourite thing in the world. So this was a perfect exhibition.

It was decorated from top to bottom, perfectly and fittingly, from flying keys to red cloths over lamps in the divination area. Honestly I wish I had booked to see it at least three different times, just for how amazing it was.

It’s also worth saying how disabled friendly it was, with all members of staff being incredibly helpful, the shop being well spaced out, there being a lift option for all areas where there were steps, the exhibition itself easy enough to maneuver around. All in all, a pretty magical trip.

The exhibition is now sold out, but panic not! The accompanying book that is readily available has all the things you need to see in it. Promise I’m not being sponsored, just fully aware that there are millions of Potter fans, and only so many tickets.

It really was like being sucked into the world of Harry Potter, if only for a little while. We nipped across to the shop in Kings Cross after as well, to find some more exciting things. Here’s a picture of my HP charm bracelet with the new charms on!

My Ravenclaw charm came first, then my Hogwarts letter, then yesterday I found Niffler! My friend bought the Snitch, then in 9 3/4 found a set of four charms including a Snith, soooo one Snitch came to me, along with separators…. All of which have spells on them. “Obliviate”, “Stupefy”, “Alohamora” and “Expelliarmus”.

I’m a happy little Muggle today.

Painy Day – Adaption Examples

Today is the worst I have felt in a while. My legs feel like they are full of spikes, every time I walk. My vision isn’t focusing well. And, as if my uterus knows I said in my previous post that my pain had improved, it has flared, and had me back to gasping at pain lasting only for seconds at a time, but still intense enough to knock me down. 

It’s so incredibly frustrating.  Yesterday I told my doctor joyfully that at least we had an answer, and it has made so much difference to my pain. Today I’m in agony. It’s such a no win sometimes; as if all you have to do is think positively and your body sets you another thing to deal with. 

I’m dealing with all of this by taking morphine and resting. There’s not really much else you CAN do, which is a majorly irritating fact in itself, because again, it’s almost as if The Pain knows it would have a fight on its hands. 

Sometimes – when I’m half asleep at 4am or dosed up on strong meds – I picture my pain as a bully, one of the bastards who made my life hellt school. Always there, just waiting to attack you, making others laugh and call you names, having all it’s fellow bullies to join in if you ever challenge it. Nasty horrible creature. As it is, there is no benefit to this outlook; it just drags you down and makes you miserable. A far more realistic is to think about the position pain does pay in your life, and the control to your hands. This can be done im little ways and big ways, just bits and pieces to kick that bully back in place. For me, these include proper pacing, using my electric wheelchair, audible so I can still read but not cause a migraine, buying pre cut vegetables and having a good cocktail of medications to treat each component of my situation. 

How this works will be totally individual to all people, but is a satisfying middle finger to that pictured bully, if you can get on with normal things in am adapted way. Living life with a chronic illness is all about adapting, and whilst this fact is one which in an ideal world I wouldn’t be faced with, rather face it now than be worn out by ignoring it. Making adaptions doesn’t  mean making exceptions or exclusions necessarily.  For example, next week I’m traveling to see a friend for the day. On foot I would be tired within minutes of walking, and so realistically wouldn’t be able to go. Instead, I’m going in my wheelchair, have booked ramps at train stations and will be strapping up my weaker joints. I’ll still pay for it the week following, but by adapting the situation it will mean a special day. 

It costs an awful lot emotionally sometimess, adapting to your situation. I only it’s worth it when I do things like next week, and as I’m sat on the train watching the çapital drawing closer, knowing I’m doing something I wouldn’t otherwise manage, then the cost is so worthwhile. 

Something Wonderful

Last week I had my second round of Zoladex. I knew that having this treatment at all was going to be a bit of chance taking; we were working on a theoretical basis, even if the discussion surrounding Endometriosis was years old. (On a side note, this begs the question why Zoladex hadn’t been suggested in the decade I have been have gynecology treatment, but we won’t hold any grudges. Okay, not MUCH of a grudge.) It was based on the answers we did have, all of which pointed to Endo as the answer, just without the final confirmation. Zoladex was a way of finding confirmation in rather a crude manner; pain stops it’s Endometriosis, pain continues, it’s not.

Well, miraculously, wonderfully, amazingly – the pain has stopped.

Obviously I still have my other lots of pain, but this pain has stopped. It’s so absurd to say that. It’s stopped hurting. For the first time since my periods began, I haven’t had pain in my abdomen. In the fear of oversharing, for the first time since becoming sexually active, I’ve had pain free sex. I didn’t need painkillers afterwards. What we thought were food intolerances have stopped. I’m not in pain when going to the bathroom. I can bend over without my belly screaming. I even wore something with a bit of a waistband the other day. Admittedly this I could only manage for an hour before my body started to complain, but goodness knows that’s an hour longer than I have managed in who knows how long.

I’m recovering from a nasty bug at the moment, so I can’t judge completely how my body is tolerating the treatment, but the only real side effect that is having an impact is insomnia. I’m used to my various pains waking me up, and this is still happening with my fibro, so it’s not a real issue. Quite honestly I’ll take being awake at 3am if it means I can live more freely. I’ll see how the rest of the following weeks go before I judge truly how the Zoladex is being reacted to.

There is an edge of bittersweetness to it all. For years, I have been arguing that something isn’t right, that something has been missed or ignored, that I need to be listened to. I know that many people, especially women, around the world will be familiar with this. We simply are not listened to. It is easier to shut us down, shut us up, tell us to stop making a fuss, sometimes outright threatened (shout out here to the doctor know ‘affectionately’ as Doctor Dickhead who told me he could operate on me to see what was causing the pain but I “would”, not “might”, end up with a colostomy bag and would never live a normal life again, and anyway I was just making a fuss) into silence to keep us down and quiet. I was already sure in my suspicions that it was Endometriosis, though of course it’s natural, somewhere between common sense and the medical silencing, to wonder what if there is something else going on. For the pain to have eased to a stop, it gives me an answer, and whilst knowledge is a powerful  wonderful thing, in this case it simply leads to more questions. Where? What stage? How much? Fertility? Operations? What next? Maybe if the silencing around Endometriosis wasn’t as dramatic, I would feel more comforted in my new knowledge.

That’s not to say I’m not happy. My mood has massively improved with the change in my pain levels, and generally I can’t stop smiling. I know what’s going on now. I’m not imagining, exaggerating, lying or having repercussions from my sexual abuse, all of which have been implied or stated outright at various points over the last few years. I need to call my doctor today to sort out one of my medications, and I can’t wait to update her, as she has been almost as invested in this journey as I have been.

The pain has stopped. I’m already nervous about what will happen when we reach the end of the six month trial and I have to stop the Zoladex. I know I can handle whatever comes next, because I’ve handled everything up till now. There will be improvement and then there will be return to normal. All of that is part of the proof needed. This year will be a written off in relation to fertility, as the focus needs to be on getting my body to a state where it could cope with a pregnancy. This is a separate issue to get my head around, though I am handling it quite well 95% of the time. There have been moments of metaphorically stamping my feet (because if I actually stamped, I’d fall over) in sheer frustration from the whole situation we are faced with, but generally I am at peace with where I am, and where we are.

I feel so much better. I’m very tired, but as I say, I am recovering from a particularly unpleasant bug, along with the happy yet oh so tiring festive season, and the hormones, and the insomnia, and my other health conditions, so it would be remarkable if I wasn’t tired. It’s still far better than the amount of pain I had been in even two months ago, a memory I doubt will leave me no matter how far away I travel in both pain relief and time. I know the pain will have to come back when we reach the end of the six month trial, even if it’s only to prove a point, a temporary return whilst it’s decided what to do next, and this is hanging at the back of my mind as the days count down until the six month point.

But the point is – the pain has stopped! Just saying that makes me smile. The fact Zoladex is working, the fact I was right and not imagining things, the fact that I can tolerate foods again, the fact I can have pain free sex…. All of these are wonderful, wonderful things. Sitting with this knowledge is a brilliant start to this year, and I can’t wait to see what comes next.

The intention vs. The reality

The road to hell is paved with good intentions, so they say. I have many a good intention, multiple a worthwhile plan, and so believe at times I am very much in a living hell. With days and activities so dependant on how my health is, and the last year having tried and tested me in ways I couldn’t have predicted, it is a general sense of gloom that stifles my excitement for Christmas this year. 

Last year, I was so unwell and got through it all by telling myself regularly that it was temporary, and that this Christmas would be a different matter all together. It was something to hold on to during the worst moments of pain. Finding myself having to make the same promise to get through this year is both disappointing and upsetting. Will I be telling myself the same thing year after year after year? 

I want to do so much, for myself and others but especially with LittleCrafter. Christmas is such an energy consuming time of year, with places and people and activities and essentials. It’s such a wonderful time of year, but when you have anything extra to deal with, it makes life all the more difficult. Even wanting to enjoy yourself is tiring, and just feeling festive leads to early nights. I’ve been going to bed around the same time as LittleCrafter, what with a combination of everything. 

Following the Zoladex injection, and having only finished bleeding last Monday, starting bleeding again this Wednesday has not been a happy turn of events. The pain stretches from my upper abdomen down to my calf muscles, my migraine is screaming, the contractions and backache are so intense I just want to curl up into a ball. The guilt of Little Crafter having to put up with all of this all over again, with a week in between and me still under the weather from blood loss as it was…. It’s almost as bad as being useless in the first place. 

Endometriosis seems to be controlling my life at the moment, let alone my fertility. You don’t get to pick the life you are issued, and of course there will be difficulties to face is all. But part of my trauma therapy is focused around acceptance, and there is a certain imbalance in how normal the hand I’ve been dealt is. That fact is just that, and to know it is overwhelming even for others to hear justifies the trauma of living it. 

Zoladex

This Tuesday, I had my first Zoladex injection to treat for Endometriosis. This is scary, but far less scary than what went on the week (and years) before. I will pause to say there is a content warning here for bleeding, miscarriage, infertility and related trauma.

These injections were initially suggested a few months ago, but as they work by putting you into a temporary menopause, and we have been trying to conceive for so long, I turned down the suggestion with the support of my GP. Last week wiped all other cards off the table however, and put conception far from my mind. I’ll start by talking a little bit about me specifically, and then by discussing Zoladex.

I have always had horrific periods. Right from the get go – which was in primary school, as I remember having to use the teacher’s toilets, as the girl’s ones didn’t have sanitary bins – they were horrendous. Heavy, excruciating pain, irregular, and demobilizing, they would leave me anemic and sick, and impact so much more of my body than just my womb. Over the years this has only become worse, with the pain becoming constant, and there being a deep fear of when they would turn up.

Last week was exactly like this, but in flare. I started bleeding normally the previous Tuesday. The pain became increasingly awful, until by the Sunday night I could hardly move. I had done a pregnancy test to check I wasn’t miscarrying again, and it has been negative. I had an incident that evening where I lost so much blood and such a large blood clot, I considered ringing an ambulance. I’m hindsight I probably should have. Monday morning I spoke to my usual GP, who suggested we now consider Zoladex, and prescribed something to dry up the bleedimg. By Monday afternoon it was worse, and I saw a different GP, who specializes in women’s health. I have seen her before on several occasions, and I’m glad she was the doctor available on this day. We discussed how the word “endometriosis” hovers over all my notes without with confirmed either way, and how all the evidence points towards it being the case. This was done to the degree we were both using the term endometriosis to describe what was going on, the conclusion being it was an endometriosis flare. We also touched briefly on the situation back in May, and how that has been very similar.

My GP called me on the Wednesday morning to see how I was doing, and asked if I had thought some more about Zoladex. I had thought long and hard, asked friends for their opinions, and spoken to my husband, and come to the conclusion that trying Zoladex was the right decision. This wasn’t an easy decision. We have been dealing with infertility for several years now, have had two miscarriages, and allowing my hormones to be shut down, completely knowing for sure there was no chance of conception, was something that I cried about. But as I sat there, in pain, holding a hot water bottle to my abdomen, dosed up on oramorph because the pain was so bad, the real truth of it was that there was no chance of conception with pain so horrific, and with this not being an isolated incident, it was a difficult truth to face, but a truth nonetheless. The reality is that I currently live my life in accordance of my menstrual cycles, with things being so awful, and that’s no way to live. It seems inconceivable to me that anyone could have their period and not be completely crippled by it.

By making the decision to go onto Zoladex, I was hoping to have some attempt at the myth of normal. To not have my every week controlled by pain, and cramps, and worry, and blood. Because whilst no period is ever the blissful joy any sanitary towel advert would like imagine us to think it is, blue liquid included, it would be rather pleasant to not have my every waking moment demanding attention by my reproductive system. I was warned that it would not be unusual for no difference to be felt in the first month, but that in month two, hopefully there should be some improvement.

And so the appointment was made for the following Tuesday (fuck sorry that sounded almost Victorian, I do apologise), with the specialist nurse who does these treatments. It was referred to as an “injection”, but in reality, was an implant. The safety syringe worked almost like a push tip pen; there was a tiny implant at the tip of a rather large needle. The nurse took a large pinch of flesh in my abdomen with me laying on the medical bed (I swear I have never been rather so glad to be curvaceous….) and pushed the tip down with the needle at a specific angle. Releasing the press down top caused the needle to retract swiftly, with a sharp feeling. All of this said, I didn’t even bleed. It was done very quickly, and whilst it was not painless, the week before had been so agonizing, it was well worth the hope of things being different.

I was informed that this implant will be injected into alternating sides every time it is done, and that to expect some localized sensitivity for a few days. It was noted down as “minor procedure”, and ultimately that was that.

Zoladex is a treatment commonly used in treating both prostate and breast cancer, as it suppresses the hormones from growing, and so works to help with these condtions. It works with endometriosis by stopping the estrogen levels rising, and so stopping the patches of endometriosis bleeding. It is at least a non-surgurical approach to tackling endo pain. There are certainly issues with the approach, the main being the hormone suppression and the side effects that causes. That said, the approach is also logical, and makes perfect sense, as long as I can tolerate the impact of the treatment itself.

I’m slightly apprehensive about screwing with my hormones, as previously this has impacted on my mental health, but the flip side of this hesitation is that I have worked tirelessly on my mental health since this last issue, so to judge my previous stability without consideration towards this would be foolish.

So for now, my approach to both my Zoladex as an entity, and the side effects it may give me, for I am very aware that living in a temporary menopause is not a delightful state of affairs. But in the name of all things yarnie, I cannot keep going in this never ending menstrual monster cycle.

So keep your ovaries crossed, peeps. And your balls if you don’t have them!

All those pain killers….

And you’re still in pain?

This is a hard onw for people to grasp at times. The pain is constant. It doesn’t stop. My combination of illnesses make it particularly nasty, as there reaĺly is at least one type of pain in every area of my body at any given time. Many areas are impacted by several different kinds of pain, and the last year really has been a lesson in what my body can put me through, and  what I can go through. 

That sounds very much like me and my body are at war. It does feel that way sometimes. When I’m vomiting or dizzy from blood loss with my awful periods, or when I’m on the sofa unable to move because of fibromyalgia flare, if feels very much like me and it. Seperate enterties. I guess it’s a coping mechanism, though just like with anything there is plus and minus points, and in this instance the minus point is being so uneasy with my body that I don’t trust it whilst I’m living in it. 

It sounds bizarre I’m sure, but I’m also sure those with, or familiar with, chronic illnesses and chronic pain will not be surprised by the description. Not knowing what will happen next, not knowing how long my body will keep going until it  breaks down for the day… of course there is an element of the unexpected in the life of everyone, but knowing  you don’t know what to expect is a frustrating sensation I am struggling to successfully describe.

Picture, if you will, a car that needs work on it. You know it’s damaged and could break down at any time, but you have no way of telling if that will be as you’re leaving your location, or of you’ll manage the journey. You spend the entire time in the car on edge, waiting for the warning signals you’ve become used to seeing, giving you a short time to get somewhere safe before it stops working. 

This would be no way to function with a car, and it’s no way to function with a body either. 

The unpredictable nature of  my illnesses make having a social life of any kind hard. I used to see a few people fairly  regularly, but the majority of my social life lives via my phone and the internet  now. There’s no issue with that, but it can sometimes feel very isolating. Feeling that your body is depriving you of friends is not a nice way to feel. My friends are wonderful though, in person and through technology, and I wouldn’t chamge them for the world. 

What I would change is my illnesses. I don’t remember what it is like to feel full of energy, and not bone achingly tired. I can’t recall not being in so much pain that every movement is measured. I miss not having to plan a day out around naps and medication. I envy those who have a social life. 

Most.of all, I have forgotten having a body I can trust and rely on; that trusty car people use without thinking about, without needing to think about because it simply doesn’t stop working.