Disappointment and determination

Yesterday marked a month to the day of my op, and honestly, it’s all a bit much. In the weeks, even days, following my operation, I felt Better. With a capital “B”. Within 48 hours of waking up from the operation, I was back to my normal dose of pain killers, which, whilst they might be higher than normal people’s doses, is an achievement. I was feeling so hopefully about it all, maybe a bit too much, admittedly.

I did bleed heavily. More heavily than I was expecting. I had bought plenty of heavy duty reusable towels due to how heavy my periods were before hand, and a few extra to be sure. But Even then I went through them more than I was expecting. Then it stopped. Thank goodness. And I was feeling relieved, thinking maybe I could get a fair idea of things when the bleeding had stopped. A few days of normality, life being semi normal, and then being out with friends for dinner, and I flooded. Managed to hobble-dash to the toilet, had to throw my pants away but could save my tights (thank goodness). A huge amount of blood and some nasty looking clots. I did the classiest thing known to mankind and called my husband to pick me up, adding, “And I flooded everywhere, bring a towel”. So rock and roll.

The occasional cramp over Christmas and the maintaining inability to tolerate eating anything at all, but life was good. It was a lovely, blissful, peaceful Christmas. And I enjoyed most of it with only normal levels of pain – and have formally decided they should prescribe snowballs on the NHS.

Then, because the year always starts with a good indication of the year, I started cramping badly and bleeding slightly on the 1st. Then the 2nd it got worse. And here we are on the 5th and Jesus CHRIST I am a miserable cow. I thought the hormonal flares after were bad enough. So now on top of bursting into tears when seeing a Flower Fairy book (true story) or seeing an advert despite it having run every twenty minutes (also true), I feel like my body is beyond broken.

The fibro has flared, and it feels like there are blunted flames running through my body. My limbs are heavy but numb. I feel sick, viciously sick. Continuing with no appetite, and the background knowledge that anything I eat with make its exit viciously anyway. My head is pounding. My uterus feels like it’s trying to scrape it’s way out of my body, and my lower back is so painful I can barely move; the joy of nerve locations. As for the bleeding… honestly, it’s heavy enough to remind me of my miscarriages. And the clotting is horrific. I’m not squeamish (I wanted to go into forensics!) But it hasn’t helped with the nausea certainly.

I’m trying so hard to remain positive, and trying to focus on things getting better, and trying. Just, trying. But it’s exhausting.

Regardless of mental illness, I am a logical, positive person, and I knew this operation wouldn’t be a magic fix. And yet trying to function with this level of pain, and this level of being symptomatic, is so difficult. I gave up on wanting life to be normal years ago, but maybe I got my hopes up too high for results.

I’m not a fan of the whole “New year , new me” type attitude, but what I am a fan of is taking things step by step, whether that means day by day, or minute by minute, or book by book. Being unable to crochet without extreme pain at the moment means that when I’m sick of watching TV I’m drowning myself in my book list for this year.

Disappointment, and determination.


A Time For Everything

I’ve been pretty quiet lately, on here, on social media, and in real life. It has been one of those Times. Those Times that you find yourself reflecting, even without the intention to do so. Where you hide back under the duvet and recharge. Where you look at your phone, mentally log it, then turn back to your book. Where, in my case anyway, you watch Thor Ragnarok on repeat so you can pretend that Loki is absolutely fine, just to protect your mental health.

I’d be lying if I claimed that I hadn’t been depressed over the last few months, with the increase in pain and decrease in energy. It has been very frustrating, dealing with the return of full blown symptoms, and has been a time to contemplate what it means, facing never being fully healthy. Zoladex was a wonder drug for me, and facing everything return has been trying.

Time wise, I’ve struggled with the pain from my gynae health for over a decade. The average time for diagnosis of endometriosis for women who start suffering in their teens is over 12 years. How outrageous is that? To now finally be at a point of diagnosis, I look back at the time I have struggled without acknowledgement, without being believed, and hope I can say it has made me reach the persom I am today. I attended a gynae appointment on Friday that was pretty damn awful, yet I managed to advocate for myself. It was still difficult and frustrating, and I did have to hold my tongue, but the years of experience have helped me in a way I couldn’t have anticipated in the appointments I have made it through.

Over the course of the last year, I have experienced so much, mentally and physically. With trauma therapy, pre, during, and post Zoladex, normal ups and downs… it really has been a time of getting to know myself all over again, day by day. Addressing my pain, becoming accepting of it, even at times trying to embrace it, acknowledging where and who I am today… it is both a challenge and a joy.

Time is so fleeting, life is so short. I can’t manage to feel positive every day, that simply isn’t realistic. What I can try and do is remember that at the very worst, each day is only twenty four hours long. When life feels overhwleming as a whole, breaking it down to hours to cope with makes it easier to breathe.

The time I’m at in my life is so interesting right now. It is exciting, even on the hard days. Now with a laparoscopy booked in, and the hope of reduced pain on the horizon, I am looking forward to looking forward.

It’s been a long road, getting from there to here

Several years ago now, I met an amazing man, who I am lucky enough to call my husband. I fell head over heels quicker than I like to admit, and was surprised he felt the same, what with everything I came carrying. Within six months, we were engaged, and had decided that we were going to grow the family.

Notice how I didn’t say “try to grow the family”?

I couldn’t possibly consider that it wouldn’t work. Even knowing I had gyne issues, it didn’t seem plausible that there would be any problems. My son was a surprise pregnancy and – I hate the term, forgive me – a “contraception failure” when I was 17. Based on that, how on earth could a planned pregnancy not happen? I was obviously incredibly fertile. If I’m entirely honest, I cried the first period that arrived after I stopped the pill. I honestly just expected it happen. I even reassured my now husband that we would be fine. We picked out names. We even looked at baby clothes and talked about how amazing it was going to be.

Then time went on. And on. And on. And on.

I couldn’t work out what was going wrong. I was taking prenatal vitamins, I was doing the exercise I could manage, I even bought conception assisting lubricant. I bought bulk lots of ovulation tests and pregnancy tests. I can’t count the amount of sticks I watched for three minutes, hoping with everything I had for those two lines yo appear.

All the while, my endometriosis symptoms were getting worse. I went onto stronger pain killers, which made me gain weight. My cycles became more irregular. It became more painful to have sex.

Then in 2015, the year we got married, we had two miscarriages, both in the first trimester. We were, naturally, devastated, and both became depressed. After the second loss, my grief was totally all consuming. I was a mess, completely illogical, and a total wreck. It took a long time to come out the other side of that, and it still grabs at me at times. We both struggled between being desperate to conceive again, and the other alternative of being terrified to lose another baby. (Please note, this is not a “pro life” comment. I am entirely pro choice, but, whether logical or purely emotional, those early loses were very much our babies.)

We started going through medical investigations. Blood test after blood test, scan after scan. My husband’s results came back entitely normal. His sperm count was the low end of normal, but normal all the same. So the problem was me. The blood tests confirmed I wasn’t ovulating, and my ovaries had become more polycystic than they already had been recorded as.

Not only were we up against it with those facts, but we were also just left with those facts with nothing more to do with it. We had reached a point where all investigations had been done, and my health had gone further down hill. By this point I had had two accidents that had impacted me, and continue to now, years down the line. Pain was now ruling not only my life, but our lives as a family. We were all struggling with how ill I was, and with how things had been left fertility wise.

We stopped discussing names. We stopped talking about baby clothes. We stopped joking about leaking boobs and missed periods and night feeds. We stopped watching programs that involved babies.

I say “stopped” as in past tense. We’re still there now. All that easiness of trying to conceive, all that laughter, all that excitment, has disappeared.

Now we’re at a point where the extent of my pain is really damaging our lives. So, when my – lovely – new gynaecologist agreed to do another laparoscopy recently, I requested that it be put on my notes that I give permission for removal of anything up to and including a hysterectomy. Adhesions, cysts, tubes, ovaries, womb. All and any. Whatever. Just take it. Just stop it hurting.

Seems a drastic request, I suppose, especially as someone hoping to conceive, even if that thought is just a quiet little hope now. It was so easy and so difficult at the same time. The weekend before that appointment, I had my first post zoladex period. It was just as bad, if not worse, as the last one before we made the decision to start Zoladex. I genuinely woke uo screaming. My husband thought I was having a flashback nightmare and tried to reassure me. But it was pain. So much pain. Pain upon pain. I doubled my dose of oramoph just to try and function enough to get to the toilet (there is endometriosis on both my bowel and bladder, so it causes UTI like pain when using the loo, and absolute agony if my bladder becomes too full). My husband had to work the following day, and I couldn’t get up. I had to call my mum to come over and fill up my hot water bottle. That was the Saturday. It was also Pride weekend here, and had it not been, I would have gone to A&E. I still wonder whether maybe I should have. I struggled through the weekend, and on the Monday saw my surgeon. That was when I said “hysterectomy” out loud to him.

So here we are. This post vaguely covers the journey, physical, practical and emotional, that the last few years have thrown at us. Endometriosis has ruled it largely, as it has so much of my life. The decision I made and the place we are at now is somewhere I couldn’t imagine reaching back at the beginning of this journey. And yet, I remember being twelve or thirteen, curled up in a ball with a hot water bottle during a horrific period, having come home from school because of flooding, thinking to myself how I could stop my periods. I remember laying there so clearly, thinking “I’ll get pregnant – that’s nine months free – and then I’ll breastfeed until my period starts again and then I’ll get pregnant again, and I’ll keep doing that then have a hysterectomy”. I wasn’t even at the age of having sex, and yet that was my thought process, just desperate for it to stop already.

Now, I am twenty seven, and I’m checking the post desperately every day waiting for a date, and almsot as desperately wishing I wake up without a womb. In my ideal world, I have this operation, they remove the things that are causing issues, and in a few months time I’m pregnant with twins, and everything is sunshine and rainbows. But – hope for the best, plan for the worst. Though really, will waking up never having ti face a horrific period again really be the worst thing?

I’m at peace with my decision. And whatever happens we will just roll with it. The last few years havr been completely beyond my control. This, at least, has come from me.

Ableism Disguised As Environmentalism

Plastic. Especially, plastic straws. They’re in the the news, they’re all over social media, there are signs and changes in all the big chains. And in one way, I totally understand that; we do need to take care of our planet, especially our oceans, and and it is massively important we teach the younger generations to do the same.

However. And it is a big however.

Going after plastic straws is not the way to go. Not only is it not objectively the most practical option when it comes to reducing the use of plastic, it is ableist. Hear me out.

People with a range of disablities and health conditions rely on straws on a daily basis. Speaking just from personal experience, I need to use straws for a range of reasons. When my hands are shaking too much. When my fingers and hands cannot support the weight, or are dislocating easily. When I’m laying in bed and moving my head makes me too dizzy. Sometimes my body is too shaky, and holding a mug is asking for spills and potential burns. My body can jerk suddenly, in pretty much any area, without warning, so again the risk of burns, or damage to my teeth. Drinking from a straw helps drinks stay down better with ny gastroperesis, which for thosr of you who are lucky enough to not be familiar with, means that things you’ve swallowed not staying down.

And these are just some examples, off the top of my head, that impact me. One person. If those are a few of the possibilities for one human being, the number of issues is endless.

So, straws are needed. The fact they need to be plastic is another issue.

Paper straws are fine…. as long as you don’t have any issues with your mouth and jaw. If you need to chew whilst drinking, have issues with textures, have a jaw that can clamp, or – again – goodnes knows how many other symptoms or problems that might impact on you drinking, straws are an essenital item.

Reusable straws are a great thing. Genuinely think they are awesome! Glass, ceramic, metal. There are even collapsible ones now, which go into a little bag that can clip onto your keys. Brilliant plan.

If. You. Are. Able. Bodied.

I’ve had people act as if the fact that plastic straws are being replaced by paper straws in mainstream caf├ęs, and the fact there are options like reusable straws, wipes out the issue. It doesn’t, and that’s what this post is trying to stumble at. It doesn’t just erase the need for disabled people, because these things work for able bodied people. It’s not that simple.

I know that some – hopefully, most – people have come to the conclusion that all is solved simply because they haven’t considered the possibilities, and that’s okay. How can you know, unless you know? It’s the same with people not thinking about parking on the pavement until they see a wheelchair or guidedog. And then next time, hopefully, you park elsewhere.

That’s what I’m hoping this post will do. Don’t judge people for using straws. Don’t turn your nose up at those who are struggling. Just like other stereotypes and in built judgements, like homophobia and sexism, ableism is there and is prevalent. There are active prejudices and low level prejudices, and thinking that plastic straws are a novelty is the latter.

Whilst this post is mostly about straws, it is also worth as an aisde mentioning the extra ableism that goes on in regard to other plastic disabled people need. From ready meals to medication strips, syringes to vitamin bottles, there are all sorts of things that again, may seem optional or not needed if you are able bodied, but are things that have to be factored into your day to day life wheb you have health conditions.

I take six different medications on a dailt basis, plus extra, and eight different supplements when I can keep them down. One of my medications, for chronic pain, I take nine tablets a day. It comes in plastic strips of ten. So I go through nearly one a day. And that is just one med. I don’t have a choice about that. It’s not my fault. All I can do is take my tablets and try to function.

We do need to work on helping the enviroment as much as we possibly can. My son is a massive eco warrior, he is eight and already feels passionately about it; without wanting to blow my own horn, he wouldn’t be that way if he hadn’t been taught at least some of it. I am not heartless, but that’s rather my point. It needs to be a balance. There needs to be love both for the environment and for the people living in it.

I had a shower today

Sounds silly right? But this is an achievement. It’s been a few days…

I always promised myself – and probably at some point you all – to be completely honest about my life here, and the struggles that come with it. Being chronically ill  isn’t full of glamour and sexiness; I must confess that whilst I’m open minded, the fetish that revolves around being unable to do things disgusts me. I know that may well sound odd but I live in a very liberal city and you’d be surprised what you over hear! 

Little tasks take so much energy. It is often exhausting just thinking about the things I need to do, to the point where I just want to hide from it. Typing this on my tablet is involving lots of breaks and I’m leaning against a pile of pillows. And this is a task I’ve chosen to undertake, not one that I need to do. Having a shower is one of those things that needs to happen regularly but is utterly debilitating. It leaves me dizzy, weak, and normally with a migraine because of the change of temperature. The relief of having clean hair and skin is lovely, but the amount it costs is something that I really have to consider. 

Today was a day that took a lot out of me. I had to find a dress for a funeral, which is an emotional statement in itself, as well as the physical issues. I tried on twenty items of clothing today. This takes a long time, as I need to test in between items as well as how slowly O have to more when using my shoulders and hips. Both are frequent sublaxers, both are incredibly difficult to work with. It’s hard work and normally my approach is to buy things, try them on at home and return what doesn’t work. That wasn’t an option in this situation so I had to push myself in several ways. God it hurt. My endometriosis was screaming, my pelvis was on the verge  of going, and my hips felt like they were going to break through my skin. Having had my physio session yesterday didn’t help, I’m sure. I’ll write more about that soon. Long story short, it was a difficult and painful but I found a dress, which is both suitable and very pretty. 

So now, both shopped and showered, I am in clean pyjamas, comfy in bed, watching wonderfully trashy TV, and plan to stay this way until it is time to snuggle down. Husband changed the bed yesterday so the sheets feel lovely and clean as wdll. 

Little tasks for a healthy person might be a bit dull or frustrating, but for someone with chronic illnesses it is overwhelming. The pain and fatigue, the stress and anxiety, all bundle together to make it something that means every tiny thing is almost a distant dream. 

God I miss being healthy. 

This isn’t a depressive post. I’m in a good head space. It is purely a realistic post. 

Finding strength

When life gets overwhelming, it’s easy, and natural, to want to hide away, and I’d be lying if I said I didn’t say I don’t do my fair share of hiding. There isn’t any shame in needing to do so, but it is important to come out the other side. It doesn’t matter when or how or why, just as long as it happens at some point, in a way that is best for you.

I’ve been hiding lately. Life has thrown a few curveballs and my health hasn’t been great. My stress levels have been high. I know they have, as, even when I don’t feel too stressed, my sleep goes down the drain. I go back to struggling to sleep, waking up in the night, and having more nightmares. Interestingly – and frustratingly – the first two issues don’t impact me during the day when I need to nap, but the nightmares are still just as bad. On top of sleep being problematic, and possibly connected to it, my fatigue levels increase and suddenly I’m just a wibbly mess. So I hide, in ever way possible. I withdraw in person and online, I’m snappy with those close to me, and I take to just laying in bed, either sleeping, or staring mindlessly at my phone, scrolling through social media but not even taking it in. That whole cycle in itself makes me more down, and I become more wrapped up in it. I’m fully aware of the way I get stuck. In the past, I’ve punished myself for behaving like this. Post trauma therapy, I’m practicing being kind to myself, and letting my body and mind do whatever I need to do, within reason obviously.

I’m slowly starting to edge out of hiding. Slowly being the operative word. I’m pushing myself slightly, admittedly, but with the inclination to do so, which – I feel – treads the fine line between respecting my needs and giving myself a shove. I’m starting to socialize a little bit more, by text and online, although I haven’t been well enough physically to do much in person. That’s a goal for the upcoming weeks. I always used to resent goal setting when asked to do so by professionals, but that is one of the things that has shifted through my trauma work. I would by lying if I said I would run happily towards a goal setting exercise, but recognizing my personal goals, knowing what is right for me, can only be a positive thing.

I called this post “finding strength” for a reason. I’m talking about all of the above as if it is simply logical and easy. It really isn’t. Listening to my body and brain is sensible, but even that decision takes locating strength. Getting to a point where I can recognize the strength I am using is an achievement that I’m genuinely proud of. Finding the strength to do whatever it is I’m needing at that particular time is always something to respect, and of course it’s not just me who has to do that. Everyone does. Every day, there are decisions and moments, large or small, that take strength, and finding yourself capable of doing such is a wonderful thing.

That isn’t to say of course that it is a failure when you can’t. Just like hiding away, it is a totally normal part of life. Knowing you can find the courage or ability to handle a situation feels almost like magic after years of feeling incapable of even the smallest things. That said, don’t ask me to choose what I want on a pizza. I’m awful.

Things like crochet come in really helpful when it comes to trying to locate small gleams of happiness and hope. Crochet is both a hobby and a tool in my life that I use to push me forwards when in hiding. It’s a good, relaxed way of getting myself to do something other than hiding in bed. Even if ir means that I’m sat in bed crocheting, it is by far one of the most useful things at times. I’m regularly grateful for wool crafts in my life, both for the sense of achievement they give me, but also – and maybe more importantly – for the strength they help me find in some of my most difficult times.

I’m babbling a bit here. It’s been a weird period of time lately, and whilst everything I say here is merely a projection of my mind, it is also a therapeutic exercise in itself simply writing.

I’m crawling out of a hole here, and hoping I can stay out of it for a while.

After the interlude

Hello friends. It’s been a little while, hasn’t it?

Life has kind of slipped on by, between flare ups and appointments and sleeping – a lot of sleeping. With the end of Zoladex has come the return of the symptoms that so control my life, and the exhaustion is so all consuming. I’m sat here typing this in my pyjamas. I managed to drag on a clean pair of pj bottoms as a friend was popping over briefly, but that is about as much glamour that is going down here lately.

Whilst it sounds a bit depressing, in reality I’m okay. I knew it was going to decline after those lovely six months finished, and I knew also that things always feel worse when you’ve had relief from them. I was prepared. Well, as prepared as you can be when imagining something. I knew this was a journey. I knew it would be bumpy and painful and difficult. I knew it DEFINITELY wouldn’t be fun. And that’s okay. Life isn’t always sunshine and roses. But it’s a ride, isn’t it? It’s an experience, no matter what today is showing.

I’m feeling grateful for being here. I’ve been down to the lowest of lows, and even tried not to be here any more. But oh, I’m so glad I am. Little things have come to mean so much. Some days, stuck in bed, a purr from a cat or a beautiful sunset or a good cup of tea, they are the highest of highs.

Things are both difficult and wonderful, both up and down, and honestly? I wouldn’t have it any other way.

Brighton council should be ashamed.

So if you follow my Facebook page CaffeinatedCraftingCripple you may have seen the post I shared last night. This is a post from my personal facebook page, regarding the disabled toilet and changing area I came face to face with yesterday. I said I would be writing about the situation, so here goes.

Yesterday I took LittleCrafter to play at The Level in Brighton, to enjoy the sunshine in a different park whilst I chatted with a friend. I’m a wheelchair user of course, and I knew from when they were doing the park several years ago that they haf built toilets, including a disabled toilet. With my endometriosis effecting my bladder and bowel, I need a nearby toilet, and knowing there was one within a minute or so from the bench we found in the play area mean I relaxed and had a lovely time. LittleCrafter found friends to play with and all was lovely.

After a nice long play, we decided to head for some coffee, via the disabled toilet. Reaching the building, there was a locked door with no further information. A sign in the cafe window said that they had no responsibility for the public toilets. I was a bit stumped, and really in need of a wee. My endometriosis causes a lot of pain when my bladder gets anywhere in the direction of full.

I went into the cafe to ask if they knew what to do about it – thd toilet, not my endo – and was lead round to the other side of the building, where there were more disabled toilets, with a changing room sharing. The man informed us you had to call the number displayed, give your location, and you would be given the code. This was run, the paper said, by Brighton and Hove Council.

I have NEVER heard of a system like this.

I have been a wheelchair user for a decade now, and this is bizarre. The disabled toilets are usually accessible by use of a Radar key. Of course I understand that in a public park, the toilets need to be locked because there will always be silly people. But that is what the Radar Key is for. It is simple, straightforward and inclusive. Instead I had to sit there, getting increasingly uncomfortable, whilst my friend made the phone call for me, to get permission for me, a mother, wife and home running woman nearing thirty, to urinate.

I felt so shamed, shunned and patronized.

So my friend made the phone call. She had to give her name, number, and the location on the paper. They then ended the call, saying they would call her back with the code.

Think about this for a moment.

This involves two phone calls, a conversation, a wait for the return call, and the entering the code into a key pad. The delay of this is enough to result in people with bowel and bladder conditions to have accidents. The phone calls, problematic for those wigh sensory impairments and mental health issues. The key pad with it’s small keys are an issue for those with difficulties effecting their hands and arms.

The whole thing has not been thought through with disabled people in mind.

Frankly the whole thing is so ableist, I don’t have words to describe how awful it is.

When all of this wa done, this was what we saw when we opened the door.

Self care comes in all forms

Taking care of yourself is almost mocked in the media, seen as some millennial indulgence that is mere hilarity, rather than an essenital component to living a healthy life. There are so many things that come under the bracket of self care, from two weeks in paradise to taking medication, and none should be shamed or belittled.

Life is hard. LittleCrafter shouted at me the other day, “Life isn’t fair!”, and he’s right. It isn’t. And so sometimes we havr to make sure that life is as good to us as it can be. It’s not silly, it’s not a failure. Doing a yoga class or putting on some face cream, painting your nails or breathing slowly for thirty seconds; taking care of yourself is entitely legitimate, and I applaud you for it.

Lately my mood has been low, and I’ve struggled with managing my sense of failure. I had – have – high expectations of myself, and no where in my life plan was being infertile at 26, needing my husband to care for me, stuck in bed half thr time and in a wheelchair the other. I have been furious, tearful, jealous, angry, wanting to scream and pound my pillows, if it wouldn’t cause me so much pain. I’ve reatreated somewhat into myself. I’ve been finding just merely existing a punishment; not in a “not wanting to be here ” way, thankfully my mindset hasn’t dipped that low. But in that the way my life has played out is enough to make me consider past lives, thinking I must have really pissed some Almighty off generations ago to wind up in so much pain. My usual held together approach has slipped and even functioning has been hard.

And so back to self care. I had already been practicing Mindfulness, face masks, nail varnish, craft – my usual little things. But I needed something more. With support from surprising sources, I decided to sign up for some online study courses, to give myself both something to focus on, and a sense of achievement. When life was supposed to be full of success, finding yourself staring at the ceiling so often is immensely depressing.

One course is free, with weekly assessments online. Another I paid for. Neither offer a formal qualifications, but my goodness I cannot put into words how amazing it is to use my brain again. It is frustrating at times because of brain fog interfering with studying, and because of being too tired to do homework and research thay I would like to be doing. But being tuckes up in bed, screen propped on a pillow, listening to a lecture that brings joy to my life is some way of accessing how things SHOULD have been.

That feeling of SHOULD, that SHOULD life, ia like a ghost hanging over my life at times. I can ignore it most of the time: holding onto it would make you bitter. But when that happens, it’s nice to know that a little bit of remembering to love yourself in some way, shape or form, can really turn the mood around.

Self care shouldn’t be mocked as a tool to recovery and / or stabilization. It is valid, wonderful, and proactive. Keep going.

What’s that coming the hill? It’s the endometriosis monster!

I feel like I’m living in a whirlwind. Life feels wild, all around and within me. I want to be enjoying life with the new found freedom from some of my PTSD, and yet there is my physical health, waiting to trip me up.

At the moment, the biggest fear is knowing the inital six months of Zoladex is nearly up. This is terrifying me. The months before starting treatment were like scenes from horror films, and needing to go back there is the least appealing thing anyone could be instructed to do. I always knew it was the plan. Six months on, three months off, review. Sounds so simple to write it up like that. But the reality is very different. First point is that’s 3/4 of a year out of my life we’re discussing. Then there’s the practical points. Six months of injections is tolerable, even if they are fucking big needles. It’s over in seconds, and that’s the next four weeks covered. It’s the months after that are worrying me. I’ve become so comfortable at low level pain, I almost don’t know how to fathom what I’m returning to when the last one runs out.

I don’t think I’ve ever been this scared of pain. Being in pain chronically, I’m used to being in pain and fearing it doesn’t help, so I try to just face it head on and roll with it, but with this looming, I am terrified. And I know I’m going to have to go through it, because if nothing else, I need to prove the bloody point that I have endometriosis! It’s exhausting and scary. And infuriating. I’m angry that I am another woman in the system having to prove my gynecology related pain is real.

The months before Zoladex were agonizing, bloody and tearful. I slept endlessly so wiped out by pain and blood loss. I’m so scared of that comimg back. I can feel the ghost of that pain hovering around and knowing it will be back to haunt me before I can truly move forward with my life is such a hideous fact.

In the past, I have had a grapefruit sized dermoid cyst, two lots of adhesions, and a tube twisted so tight I nearly lost the tube. My second surgery, with one round of nasty adhesions, when I came around, my first question was, “Did you take anything out?”. They looked at me like I was mad and said no. I burst into tears. I was told to shut up and not be so ungrateful as the woman opposite me had just lost a tube.

I really need a third laparoscopy to see and remove whatever is causing issues. I’m now sure, with medical support, there is endo on the bowel as well as elsewhere, and the only way for that to be addressed is surgery.

What a surreal thing; to be requesting surgery for a desperate chance at some normal life.