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. 

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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. 

NaNoWriMo 2017 – Half Way There!

So if you are doing NaNoWriMo, the 15th of November doesn’t just mean “shitting hell we’re getting very close to Christmas”, it marks the half way writing point of the month. If you’re not familiar with NaNo, the full name is National Novel Writing Month; basically the idea is that you write a 50,000 word novel in the month of November. It sounds very scary when you say it like that. When you break it down, it is an average of 1,667 words per day. This sounds a lot more manageable, and my approach has been to really stay on top of this number, doing extra where I can, and catching up when I’ve not reached the target, but always trying to make sure I’ve written something every day.

I used to write a lot. If I didn’t have my head in a book, I had a pen in my hand, and this continued well into my teens; I would write stories, poems and songs. I had the very (very) old family computer moved up into my bedroom when my parents upgraded, and I would be typing for hours at a time, often fanfiction (yes I was part of that age group and YES I was on the Harry Potter WB forum, but I’m NOT revealing my old user name. That secret will die with me) and sometimes my own creations, but always driven by teenage passion. This ebbed away both by nature and by critical boyfriends and girlfriends, who didn’t understand my love of writing. My now husband understands why it is so special to me, and is being incredibly supportive of NaNo, whilst reminding me not to put too much pressure on myself.

Finding the balance of enough and not too much pressure is what I’m maybe finding the most testing; the words come very naturally at times, but when they’re not, they still need to come, so some element of pressure is needed. However with everything else I have going on, putting too much pressure on myself is a bad plan, as OtherHalf is very quick to remind me. My body doesn’t respond well to stress and nor does my brain, so breaking myself won’t help at all. That said, I do seem to be able to keep up the pace generally. The least I’ve written in one day is 500 words. The most I’ve written is… 5,556.

Most days I have stayed on top of the 1,667 target, or at least managed to average it out of the space of a few days/. I am genuinely so proud of myself, and whilst this might sound a tad dramatic with so many people doing it around the world, this is a massive achievement with all my health conditions, and with the midst of trauma therapy thrown in as well.

It is so soothing to be writing again. It is such a good feeling. I genuinely think I am going to miss this when it finishes, and I might have to come up with my own system to keep some kind of record of my writing, and my word count, so that I still feel like I am able to engage with such a thing! It is just such a wonderful thing, I can’t believe I haven’t done it before. And yet, thinking logically, I probably haven’t been in a place mentally where I would have been able to commit the energy to what is needed.

My physical health isn’t great right now; I am in an incredible amount of pain and I am so tired I am sleeping most of the days away, so having my writing to fall back on is like a crutch. The kind of crutch that demands something from you admittedly, but the demands it makes are such pleasant ones, where is the harm?

Today I passed the half way point of 25,000 words. Twenty Five Thousand Words. I feel like that deserves capital letters. It’s such a huge number, I can’t believe I’ve managed it. Part of me was worried I would crumble just a few days in, and whilst there would be no shame in it (you can’t be successful at everything every time, there’s a lesson I learned the hard way) I would have been massively disappointed. Reaching the half way point means I can finish it, and I feel certain I am capable of doing so, because after all, there is less left to type to finish than I’ve already written.

Keeping it together

Currently life feels like a balancing act. Between adult responsibilities,  parenting, writing, health limitations and crafting, I feel that life is just passing me by. And some days, this is fine, and other times this feels overwhelming.  “Overwhelmed ” is a regular state of affairs in my mind, I’d be lying to pretend other wise. It’s a curious way to feel, especially when underlining all of that is a determination to be positive.  

Because there very much is a sense of positivity at the centre of my mindset; this is something I’ve only see to its true extent lately. Maybe it is a steely stubbornness that is enough to sum me up, but I think it is more than that. 

Meditating and considering myself as an individual is something I’ve had tonlearn to sit with, and it has been a brave decision for me. It has also been a very positive one, and whilst it’s hardly a magic entitiy, I will keep going with it.

I guess my point is; there is hope. Sometimes tou end up finding it where you weren’t expecting.  But trust in the worls out.

Moŕe tomorrow.

CCC x

Medications aren’t the work of the devil

I posted a picture on my Instagram yesterday featuring my morning medications. I take quite a selection through the day, with a normal daily average being about 31 tablets. To a healthy person this might sound utterly extreme; but so does using a wheelchair if your body works well. Being heavily medicated isn’t a choice I have made; it is the consequence of my health conditions and their impact on my life.

Thinking just of myself as an individual, I have so many different symptoms that, if I listed them all here, you would be reading for quite some time. Some of these symptoms are minor, and I can get by without acknowledging them, simply knowing they are there. Some of these symptoms require slightly adaptions of how I run my day, such as wearing my yellow glasses in artificial light. Some require a certain adaption, namely medication. So why is yellow glasses seen as acceptable, whereas 31 tablets is not?

Some people claim that they are concerned for your body, especially your liver. The answer to this, or my answer at least, is that quite frankly it isn’t your liver. If you are well meaning but concerned, then ask me what I need to make my life run more smoothly. Don’t shame me by shunning a medical need as something dirty and nasty, rather than what it actually is – something that allows me to live my life as fully as possible. I do understand that to a healthy person, thirty one tablets sounds like an awful lot to take, and maybe even to some chronically ill people it sounds excessive. However, my alternative is not being able to move, being stuck in bed, in the house, unable to move with pain and fatigue and PTSD.

Whilst some people would like to claim otherwise, I am not of the school of thought which claims that anything can be healed by eating – or not eating – certain things. It might make things easier; for instance, my ME/CFS has caused me to be lactose intolerant, so by avoiding lactose, I can reduce one element of pain. But this easing up of a specific element does not remove absolutely everything else, nor does it cure the serious of multiple health conditions I deal with on a daily basis.

I get a lot of spam emails and social media messages about how changing your diet or taking a supplement can ‘cure’ me. Not ‘help’, always ‘cure’. Now if someone was to tell me, “Hi there CCC, I’ve found this particular thing has helped me, I thought you might be interested”, I would listen. But the second anyone tries to tell me that they can cure me, I switch off completely because there is no cure. Read that again. There. Is. No. Cure. So trying to ‘cure’ me with snake oil is a waste of both of our time. Thanks, but no thanks. Thinking that a supplement is an ideal alternative to the tablets I take is a naivety I envy at its best, pure disregard for medical evidence and my circumstances at worst.

If you are a friend or loved one of someone with a chronic health condition and you want to help them, shaming them, whether deliberately – “You’re taking too many meds!” – or unintentionally – “I think magnesium would be a better thing for you” – causes harm.  Putting your energy into trying to support them is the best thing you can do, to make sure they are as well as they can be to the degree you can impact. You can’t change someone being ill, just like I can’t change the fact I’m ill myself.

I struggle sometimes with having to take so many meds. It’s not something I ever aspired to do, for goodness sakes. It makes me feel pretty rubbish, that shot glass three times a day and everything in between. But what’s a girl to do? My symptoms need to be controlled as much as they can so I can live my god damned life. So trust me, if you’ve got someone you care about and you think they take too many meds, chances are they sometimes think the same thing. You don’t get – many – people who dose up on everything they can for the fun of it. It’s hard. You get side effects. You get withdrawal. You have to be on the ball enough to sort out repeats. Even that alone when you are a spoonie is enough to put you off frankly.

My battle with mental health started young. I now know I was suffering from PTSD from a young age, and that had consequences on my mental well being from around the pre-teen age bracket. I finally cracked around 14/15, having been depressed and self harming for a third of my life, and we went to the doctors to ask about options. Even the doctor medication shamed, telling me I “didn’t want to be on those nasty things” in relation to a query about antidepressants. If this attitude is filtering down from medical professionals, how on earth are us mere mortals supposed to navigate the field? As it was, I was on antidepressants at sixteen, and anti anxiety meds by eighteen. Even that doctor wasn’t acting on concern. He didn’t say “well here are the facts, let’s make the choice that’s best for you”. |He shamed even the consideration of using them. If nothing else, what a way to treat someone who is depressed.

I don’t regret starting the medicated side of my health journey. Yes there have been medications that have disagreed with me, and it has taken a little while each time to find the right medication. There are side effects. It’s a faff to remember and sort each day. But – and this is a big but – it is not only the right choice for me, but also entirely my choice to make.

Chronic Pain Shaming

Today another article was shared by a page I follow about how taking too much pain relief is bad for you. No acknowledgement at all that the people taking ‘too much pain relief’ are doing it for a reason.

Chronic pain doesn’t mean that you’ve just got a bit of a nagging headache that is bothering you. It’s not the kind of pain that will go away with a bit of paracetamol and it’s just a case of keep taking it. And there is so much shaming towards chronic pain, as if it is hardly an issue at all, as if it isn’t an utterly debilitating disability that destroys lives all across the world every single day.

People who make such comments about taking too many pain killers have no idea generally of what is involved in suffering with pain that is out of control. It is unbelievable when you break it down. You don’t hear people telling diabetics they’re taking too much insulin, or epileptics that they need to take less anti seizure medications. Or at least, if they do, no one takes them seriously, because they’re being bloody idiots. But when it comes to pain, the every day person is supposedly entitled to make comments about random individual medication in take, and how they should alter it, because “don’t you know that opiates are bad for you”.

Strangely, I don’t take my medication for fun. I don’t take it because I REALLY fancy having the risk of complications hanging over me, or because I LOVE not being able to drink, or as I think it would be a GREAT plan to take a cocktail of medications. I take them because I have no choice but to function, and I have no choice but to take medications in order to be able to function. This isn’t a bloody lifestyle choice. This is a “hey, I need to be able to leave the house and I currently can’t move in this level of pain”.

People understand that you use crutches when you break your leg. They accept that as a thing, without question, because it is logical and makes sense and is commonly acceptable. It is a solution to a problem. So if the problem is pain, and the solution is pain relief, what is so utterly bizarre about that?

I’ve ttalked before about the stigma about antidepressants, but the stigma against pain relief medications is even larger. Antidepressants are seem  as more acceptable than not being in pain.

It’s completely different when someone who cares about you asks if you’re okay, or shares information that might be relevant to you because they want to make sure you’re accessing the best things available. But when things like facebook pages share shaming articles, it really is just utter, utter bollocks.

Composition of me

I’ve talked at length about some of the things that have happened to me, and impacted my life. I have of course mentioned crochet as one of my big loves, and even just my name mentions my disability. But I haven’t said much about me .

Part of this is intentional, to keep myself as almost irrelevant to what I have to share, but it is also purely by circumstance, seeing no need. However I think it seems a good time to share more than my wheelchair.

So here are ten things which are fundamental to creating me:

  1. I love coffee, good coffee, but also drink a lot of fruit tea. Pukka and Clipper are two of my favourite brands, and various chamomile teas make me happy. There is a Clipper tea with acai which is possibly my favourite tea of all time. 
  2. I always have multiple books on the go at once. It is very rare for me to find one book and stick to it! 
  3. My hair has been dyed various shades of red for the last dozen or so years. My natural hair colour is now dark brown with a lot of grey. I’m going prematurely grey because of PCOS.
  4. My favourite season is Autumn; I love snuggling in cosy crocheted items, and hiding under fluffy blankets. 
  5. I’m a huge geek, with Harry Potter and Ancient Egypt being my specialist subjects. 
  6. We have three large book cases and the top of a large desk in our front room, all full to bursting. I need to live my life surrounded by books. 
  7. Secondary infertility has been the elephant in the room for several years now. I always still feel a twinge when I see pregnant women, or babies, or anything even vaguely related. 
  8. My favourite colour in the world is a peacock blue. I could paint the world with it and be quite happy.
  9. I don’t do subtle glasses. Since having to wear them, all my glasses have been statement frames. My original “normal” glasses made me more self conscious than all of the vibrant ones since.
  10. Writing soothes me. There is something so quieting about seeing letters form words, words form sentences, sentences form paragraphs. It makes me feel still and safe.

So there we go. Just a bit of an insight into me! 

PPPPPP

When I was a teenager and involved in a cadet organization, we used to be told a phrase for when we were doing our less plans; PPPPPP, or “Prior Preparation Prevents Piss Poor Performance”. This phrase has stayed with me since then, even when other aspects of that time have been too difficult to touch. At the moment I seem to be channelling the P rule, with my mind on upcoming surgery.

A friend said to me yesterday that it is our PTSD mind set that teaches us to hope for the best but expect the worst, and it’s true. I have a massive fear of surgery, like a large number of people, I’m sure. During my first surgery there were large complications and I was very lucky it didn’t have a sinister ending. There is also PTSD to consider; the knowledge my body will be touched and moved and cut in my sleep, even though I have given consent for it, is a difficult thing to sit with. So between the operation itself and a deep burning terror I won’t survive the operation, I’m finding it hard to keep positive.

That said, it’s not that I am actually negative. I am feeling hopeful that this could make a difference, and it could change my life for the better. My frustrations and even anger towards those who have belittled my pain until now, with this now found at a critical level, is hard, again, to sit with. I’m trying very much to tune into my yoga mind set, touching on some mindfulness and accept the set of circumstances that have been dealt, roll with the punches rather than sat passing it over and over again in my mind. Thinking about my recovery, where I may well be stuck in the house because I will be unable to lift the garage door at first.

That all said… PPPPPP; I did my Christmas shopping just in case. 

Normal service will now resume.

A week ago yesterday, I traveled to London to meet up with a large group of friends, all of whom I love, and many of whom I have never met before. Including one of my best friends. This is the way so many groups and friendships work, much to the horror of my parents (well, mother), who simply cannot get their heads around how you can care so much for people you haven’t met. I didn’t meet one of my bridesmaids until she came down for my wedding, and I love her like family.

It was a lovely get together, and I found myself saying “nice to see you” rather than “nice to meet you”, because all these people were people, and are people, I know, rather than strangers. We’ve known each other for years and we all know the details of our lives are safely stored in these friends.

I had to start the day at 5.30am which is a killer of a time anyway, but completely evil when you have to be on public transport by 6.30. The only way I managed the whole day was to have a nap in the corner of the conference room in the middle of things, and it is a sign to our friendships that people only thought about throwing yarn at me, rather than actually doing it.

I’m still recovering, which is part of my radio silence lately, the other part owing to every item of technology I own, leaving me unable to access WordPress…. Much twitching and swearing has ensued.

In the meantime, I’ve managed to gather another rare condition to add to my list (you know where any form asks for existing medical conditions? I have a book), and this one really has managed to terrify me. It’s called Dunbar Syndrome, or MALS, and is quite a critical issue to be dealt with. A ligament is compressing one of my major arteries which leaves me at risk of several issues. I will be having a consultation with a surgeon quite soon, and surgery not long after, from what I’ve been told.

It’s not the fact there is another condition to deal with that has scared me, I’m used to that. But what has scared me is that rather than my ‘usual’ chronic issues, this is acute, and needs dealing with immediately. The fact it is involving an artery is terrifying me. Right now I am just very scared, and feel out of touch with my body. I feel frustrated that after all the years of saying I have abdominal pain, something has been discovered accidentally which shows I am in danger. I keep looking at LittleCrafter and not knowing what to do or say to approach this.