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. 

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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.