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.

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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.

A Cripple Snow Day

It’s the 27th of February and today was a snow day! What a bizarre turn of events. I’ve never known such late snow (although of course I could be wrong), and the best bit, on a selfish level, was that it was the first proper snow that LittleCrafter remembered.

The school was open in the morning, although it closed at midday, but I was stuck; they grit the roads, but they never grit the footpaths! So as a wheelchair user, getting there and back, twice, the school runs are always a bit tricky when it’s icy. Add a few inches of snow, and it gets complicated. Snow is lovely to look at but as soon as it gets crushed, it becomes sleet. And wheelchairs don’t fucking like sleet.

So I called the school and explained it would be a snow day here, as I was stuck. LittleCrafter was perfectly happy with this, as he had been bouncing off the walls since waking up because SNOW MUMMY LOOK SNOW DAD OMG SNOWWWWWW. The word ‘snow’ was wearing thin by 9am, I must be honest.

The roads to Husband’s work were awful according to the local bus app, and that combined with me still being so ill at the moment – all well and good being unable to do the school run, but I also currently stay awake for multiple hours, which feels like a massive point of failure personally – he was needed at home. Which of course meant a 9am snowball fight.

I managed a few minutes of wobbling before the pain became too awful and I needed to go and lay down again, but LittleCrafter and Husband continued to play in the garden for a while whilst I slept. It was a painful dsy for me physically, but was also a balm for my soul; the look on LittleCrafter’s face making his first snowball, practicing aiming at the window, cackling as snow was swirling around him…. best cripple snow day ever.

It’s been really hard being so ill recently. It’s demoralizing and emotionally painful. Feeling like a failure, like life is playing a cruel joke sometimes. I’ve been quite low again of late, and the precious little moments I took from today will propel me through the next days of pain.

A Positive Appointment

I had an appointment arranged with Digestive Diseases by the Rheumotology department several months ago. It’s taken a while to reach the top of the list, but was well worth the wait. That said, it was of course one of those awkward times where I had no childcare, so had to take LittleCrafter with me, which is always a) somewhat humiliating, and b) always expensive as I end up buying all sorts (in this case, a book because comics are now the same bloody price so it might as well be a book, a Costa strawberry cooler bloody drink, and a slice of bloody cake. Sigh. Spoiler; he was superbly behaved thank YARN and even the doctor complimented how he had he had been, which was rather a relief, as I can’t help feel extra nervous taking him with me.

I digress.

This appointment came through, and off we went to the hospital (book, drink and cake in tow), and wove our way through the maze of hospital floors, until we finally found where we were headed. We were only waiting about ten minutes, and there were designated wheelchair spaces in both areas, so it was quite pleasant, in as much as these things can be. There was a nurse who faffed a tad too much because I was in a wheelchair, but I managed to keep a smile firmly on my face, almost as firm as my “no thank you, I’m fine”. These little moments are always hard to handle, because she did mean well. But she paid far too much attention to me in comparison to the others in the waiting room, and that’s when it become slightly difficult to handle.

When the doctor called us in, he informed me he had two medical students in with him. I never object to medical students, and that’s two fold. Firstly, every training doctor needs to learn as much as they can, and I would hate to waste their time, having them be sat in the waiting room when they could be gaining knowledge seems pretty crappy on my part. Secondly, I am a complex case, and so possibly present more information, or at least more variation of information, which I hope could help patients to come. All of that said, I also respect it is entirely individual, so I am in no way judging those who chose not to have medical students in the room, these are just my personal musings.

I had been anticipating the appointment for a while, and since starting Zoladex, my symptoms have changed so much I was worried he would think it was a waste of time seeing me. I couldn’t be more wrong. He took a full medical history, then we discussed the change in my symptoms since beginning Zoladex. He pressed on my abdomen, which was delightfully painless (or at the very least, with no major pain) and then agreed with my theory. The theory being that there is endometriosis on the bowel. My symptoms have changed so much in so many ways, but the bowel related changes have been particularly interesting. If you’re squemish feel free to skip the next paragraph.

Before December, my bowels were very problematic. Urgency (and I mean, only just making it), extreme pain, constipation, nausea, stabbing and spiky and swirling pain. It was a massive surprise and delight to find these things changing when my Zoladex kicked in. What I thought was lactose intolerance disappeared. Even my senstivity to wheat vanished, although I have still been keeping that as a low to be safe. All of this pointing me in the direction of thinking that there is endometriosis on the bowel.

I discussed all of this (with Little Crafter having headphones in, listening to an audio book), and the doctor agreed with me that it certainly seemed that way, and gave his support to my theory, which if nothing else is reassuring that I’m not totally losing my mind. He ordered some blood test and a coeliac test (which, for anyone who doesn’t know, involves a poo sample. Yes. A poo sample.) to check things over, so I am now eating a lot of wheat for six weeks, and then a sample. One suggestion in our discussion was that I do have lactose intolerance, and / or possible coeliacs, that is then being irritated by the bowel endo when it is in flare.

In all it was a really positive appointment that I felt I really benefited from, and hopefully has pointed things in the right direction. If nothing else, I felt it was important to go to my next gynecology appointment with back up having ruled out IBS as a cause of pain (because any woman out there will know that it is that and hormones that apparently cause anything).

This recent health journey has been complicated, emotional and hectic, but I feel like we’re really getting to where we need to be now. Fingers crossed.

“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.

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.