As someone who lives with chronic pain and chronic illness, I’ve got a fair bit of downtime. I’m currently out of work as managing full time employment when your pelvis screams at you for sitting down isn’t exactly the easiest proposition. However, the child is in Montessori all day, so I have had to find something to keep my mind busy or I’ll go completely demented (there is only so much The Good Wife re-runs a woman can manage). And so, my latest creation is this: The Chronic Pain/Chronic Illness Alphabet – an A-Z guide to Chronic Life. Hopefully it will ring a bell with others who are living with chronic conditions, and bring some more understanding to those lucky enough to not interact with it.
The Chronic Pain/Chronic Illness Alphabet
A is for Acceptance (Or Lack ThereOf)
So much of dealing with a chronic illness or chronic pain is about the need to accept your current situation. This is something I struggle with greatly and even four years in am not very good at. For me, it doesn’t stand to reason that I should be okay with how my life is turning out, in my mid-twenties with a body that doesn’t work the way it should. It makes me angry and sad and isn’t something I am at peace with AT ALL. Pain acceptance keeps being mentioned as a method of pain management – and I understand where they’re coming from, it potentially reduces stress levels, therefore lowering cortisol and inflammation. But for me, it’s easier said than done and something I (and lots of others I’ve spoken to) have to do a whole lot more work on. I’d rather that instead of asking me to accept my status quo that the doctors I work with would look harder for a fix – whether that be experimenting with alternative medications or treatments, or thinking outside the box, instead of simply asking me to accept my situation. I wrote about it more here.
B is for Brain Fog
What was I saying again? Brain Fog is an unfortunate reality for many people suffering from chronic illness – myself included. Not unlike baby brain, you can forget what you’re saying mid-sentence, forget appointments and generally become unreliable for remembering important things like words. It is probably one of the worst side effects I’ve had personally, as in work I speak to people on the phone and losing track of what I’m saying mid-sentence multiple times a day is really not conducive to doing a good job. It’s also not great when I forget to pick up things for dinner, to do essential jobs or lose track mid-important conversation with loved ones. An absolute head wreck.
C is for Contraindication
Contraindication is a word I had never come across before I became sick, but it’s one of the most important words in any doctor’s appointments I have now. I’ve been prescribed a lot of different medications and treatments for my mental and physical health issues. Sometimes these things don’t align so well – some treatments cancel each other out, and in some cases, the combination can be dangerous. For example, many of the antidepressant options which I was given cannot be combined with various painkillers mentioned to me, as the amount of serotonin in both of them is too much for one person. I can’t have grapefruit or grapefruit juice as it messes with the metabolism of medications I’m taking. Contraindication is a very important question to ask when I’m being prescribed something new, as multiple doctors are involved and may not always take a fuller look at what I’m already currently taking. Asking about it is the way I make sure I’m being safe while taking medications for my chronic pain.
D is for Depression
Mental illnesses, in particular depression, are linked to many chronic illnesses and chronic pain due to the realities of living with an illness that simply doesn’t go away. I’ve had depression on and off for most of the last decade, but since obtaining my back injury it has been a constant in my life. I wrote about my journey with postpartum depression previously, and am glad to say that for the most part, it is under control, but it is an ever-moving beast and one which I need to keep an eye on.
E is for Expensive
Being chronically ill or being in pain all the time is an expensive hobby, I’ll tell you that much. In Ireland, unless you are low income or with a certain chronic illness covered under a medical card scheme, GP care is not free, nor are prescription medications. On average, each GP visit costs about €50, perhaps a little less for a recurring issue. This doesn’t include the price of blood tests, referrals for scans or prescription medications. Medication wise, there is a cap put on the amount you pay for prescription medicines at €144 per month using the Drug Payment Scheme, this is per family. And then there are the consultants. To avoid lengthy waiting periods and to get treatment as quickly as possible, the only solution is some cases is to go privately to see a consultant. While private health insurance covers some of the costs, many don’t cover individual appointments with consultants which can cost about €200 for 20 minutes. Being sick is really bloody expensive – and that’s before you even count any lost income from being out of work.
F is for Flare
For many people who suffer from chronic illness or chronic pain, it is omnipresent but gets worse from time to time. Those times are known as flares and can lead to a whole lot of symptoms worsening. It can be caused by multiple things – change in atmospheric pressure, stress, illness, medications – each person is different. In these flares, it’s important to remember that you’re running on less energy than usual and have to take it a bit easier on yourself expectation wise – this is something I personally have struggled with.
G is for Guilt
Life with chronic pain or chronic illness means that you don’t always get to do the things you want to do. Sometimes it even means not being able to do the things you need to do, or that other people think you need to do. As a Mammy with chronic pain, I have a serious dose of the Mammy Guilts quite often. I’m not able to get down on the ground so easily and play with his toys. Going to the playground alone with him is a tenuous activity, especially on bad pain days. Kids often know just how to stick the knife in – I once got “Granny is my favourite Mummy, Granny can lift me”. Just have to grit the teeth and do what I’m able to do!
H is for Heat Packs
My absolute saviours are heat packs that I can wear around my lower back for a few hours at a time. The heat radiates onto the joints that are acting up, and particularly in colder months of the year are a real help to decrease my pain levels. I particularly like the Thermacare wraps which were recommended to me by a therapist about 18 months ago and have been a gamechanger. Not so wonderful in the recent heatwave, but perfect for normal Irish weather.
I is for Invisible Illness
Just because you can’t see it on the outside, it doesn’t mean that it doesn’t exist. Trying to explain invisible illnesses to people who have not experienced them can be really difficult. The Spoon Theory has been absolutely vital for me in trying to explain it to others lucky enough to not know what it’s like. It’s an essay written by Christine Miserandino describing what it’s like to have limited supplies of energy (symbolised by spoons). Each day, you start with a certain amount. Tasks you perform take different amounts, and you have that finite lot to take from. Once they’re gone, they’re gone and you need to rest. Taking from the next day’s spoons to do more will leave you depleted afterwards. It’s absolutely genius and a super handy way to explain to others exactly what it feels like. (The sticking to your spoons is by far the hardest part). I wrote more about the Spoon Theory here if you’re interested in finding out more.
J is for Jealousy
Linked in with the lack of acceptance comes a certain level of jealousy for the lives other people get to live without the illness. It’s not healthy, it’s probably not particularly good for me, but it’s real. From people being able to run marathons, to parents able to run around worry-free with their kids, to the advertisers who seem to genuinely believe that paracetamol is all you need for STRONG pain – I have so many wishes to be them some days and escape my own skin. I can mostly push it down and get on with life, but there’s no denying that it is there, and I refuse to be ashamed of it.
K is for Knowledge
I am gaining a medical degree by proxy from all of this chronic illness malarkey. It’s inspired me to actually go back to college in September to study for a Masters in Public Health! Academics aside though, having to do my own research on symptoms, medications, potential treatments and all that goes along with it has been fascinating. Obviously, I would much rather have all that time to dedicate to reading fiction or watching Love Island (though I do enough random binging on shows anyway) if I didn’t have to deal with it anyway, but it’s mad reading about the medical advances that are out there (and maddening when they aren’t in the field you need them to be in).
Getting involved with groups like Chronic Pain Ireland have definitely increased my want to learn much more about my illness and ways outside of “just going along to the GP again” to find a solution. As a result, I’ve found that I’m more of a subject matter expert in various conditions I’ve got than some doctors I see, who aren’t specialised in it – my speciality is MY body and the stuff that’s wrong with it, it’s natural. From speaking to others in the same shoes, it seems we’re all studying up and trying to learn our way out of this thing.
L is for Lonely
Having a chronic illness can be very isolating, and as a result, you can feel very lonely. It is easy to have friends slip away as you are dealing with a chronic illness or chronic pain, as you’re not able to do as much with them and keeping social engagements can become much more difficult. Even when you do get to spend time with them, it can feel like a huge gap has come between you as they are living their “normal” lives and you are dealing with something that they have not personally experienced. It can be really hard for both sides to reconcile this and often the person with the chronic illness can be left feeling left behind. I have found solace in online communities and in sharing my story online, because in talking to others who do get it, I feel so much less alone.
M is for MRI.
I’ve had so many of these in the last four years that I’m surprised I don’t stick to our fridge when I walk past it. MRI stands for magnetic resonance imaging, and it is a kind of scan that can produce detailed pictures of parts of the body, including the brain. I have had them performed on the majority of my body over the last four years. Unfortunately, they haven’t found very many answers (with the exception of a bulging disc in my neck). It can happen that certain illnesses don’t show up on tests and I seem to be one of those people – but we just keep doing the tests in the hope that SOMEDAY an answer will become apparent.
N is for No
No is a word I’m having to learn to use properly. I’m terrible for overdoing it – pacing myself isn’t something I’m good at. It makes me resentful that I have to limit myself and say no to things, but the alternative is to be unable to do the things I actually need to do. So NO has become a part of my vocabulary that I’ve had to use a lot. (I’m learning from the school of Four Year Old. It’s a degree programme he’s teaching at the moment).
O is for Opinions
Everyone has them. Treatments you should try. Doctors you should see. Ah sure, that’s nothing, everyone gets a bit down sometimes. Unsolicited opinions can be some of the most frustrating things you come across living with chronic illness. Whether it’s diet based (yes, I KNOW losing weight will probably help, I’m kind of aware of that), or swearing blind that drinking aloe every day will cure the physical issue I’ve got, I’ve pretty much had it all. There are some which make me actually double take – like a doctor recently who asked me if I had tried physio, directly after my telling them about the various lengths and experiments with pharmaceutical, medical and physical therapies. The only opinions I really take in any earnestness when it comes to my health are from my doctors who are qualified to have them, and that’s the way it should be.
P is for Physio.
Torture I pay for. I’ve tried many different types, and am currently being treated by a very talented woman who I am mildly terrified of because by her barely touching me, my back reacts angrily. All part of the fun of chronic pain. It’s an essential evil. I’ve tried dry needling, manual manipulation, pilates, stretches, hydrotherapy, even something with UV light. Previously I’ve raved about the miracle of being taped up (my shoulders found that AMAZINGLY useful). I’ve come to realise that physio is a long-term plan for me, there is no quick fix, but we are working these things out bit by bit. For most people, it’s a shorter term thing thankfully. However, with chronic pain, it’s a good idea to research a good physio and go to them regularly (obviously check with your doctor first) – they can work miracles with their hands.
Q is for Questions.
Both from me, to my doctors, to google and to anybody who expresses any knowledge about various conditions I either confirmedly have or have diagnosed myself from Dr Google. And from others – like workplaces “How long will you be out this time?”, friends and family, and the worst of all, “Oh, you’re still a bit sore, are you?”.
R is for Rage.
I’m not exactly 100% at peace with my diagnoses, and sometimes it bubbles up into anger and rage and all of the Why Mes. Because even though it’s not the worst case scenario, and I know that it could be so much worse, and there are incredibly brave people out there fighting a million and one worse things, some days, the rage about wanting more from my life like any normal 26-year-old bubbles up inside me.
S is for Side Effects.
All of the wonderful life fulfilling drugs have them, and sometimes, the cure can be worse than the illness. Some of them listed can be really scary – I’m currently taking a medication that has cancer risks in the side effects, which isn’t exactly fun. And some of them can be scary in other ways – when I was taking a particular combination of drugs, I was nauseous, dizzy, abdominal cramps, lower back pain and felt sick in the mornings. Guess who was TERRIFIED that they were pregnant? Moi. Thankfully, no such fear was needed, just a gentle titration of my medication to get rid of the phantom womb-dweller symptoms and it was better. That’s not to say it’s perfect – I’ve had some pretty darn horrible side effects, but it is all just a matter of trial and error.
T is for Tired.
No matter how much sleep I get, I can’t shake the tiredness. Sometimes naps are needed. And lots of caffeine.
U is for Undiagnosed
It can take a long time for a proper diagnosis of a chronic illness or reason for chronic pain to be found. In particular, if it is an invisible illness with no real visible symptoms or magic blood test results, it can be very wishy-washy on the way there. You can be told that you’re making it all up, that it’s all in your head and that there isn’t any problem with you. It is FRUSTRATING. But hold on. You will eventually get there, a diagnosis will be found, hopefully for something curable and treatable and life will get better. I’m currently in the middle of this mess and hoping to find a light at the end of the tunnel soon.
V is for Vitamin Deficiency
Lots of issues healthwise can be blamed on vitamin deficiency – so for chronic illness people with new symptoms, it’s a lottery of which vitamin we can blame it on today. Last Summer when I was getting that whole loss-of-feeling-in-limbs thing (thank you bulging disc), we were praying for a Vitamin B12 deficiency because that’s easier than the fear of MS. This year, it’s all about the Vitamin D deficiency. I’m on a monthly super-duper dose because my pale Irish skin simply hasn’t gotten enough in the last year, and I am finding a difference in how I feel since taking it. If in doubt, get the blood tests done instead of endlessly googling and diagnosing yourself with mad diseases!
W is for Warrior
Alright, so the whole needing a nap after creche drop-off doesn’t exactly give out Mulan vibes but stick with me here. Getting through each and every day of shit pain, medication side effects that make us feel sicker than we think the actual illness would and not being able to do everything we want to do can be pretty bloody draining. But we keep going. We trudge on, we do what needs to be done, with a gritted teeth smile on our face because complaining about it won’t get you anywhere. We’re fighters, warriors and this pain or illness is not going to get the better of us today. Not today, Satan, Not Today.
X is for Xanax
It’s not just for anxiety, you know! Xanax, and other benzos like it, are often prescribed as muscle relaxants for chronic pain patients. Do we want to be on them? Ideally no, but often they can be the difference between managing day to day life, or spending the day unable to move from bed or the sofa. There is much discussion about the evils of “Big Pharma” in the chronic pain and illness sector, and ideally, we wouldn’t need to take all these tablets every single day.
I certainly know that my aim is to get to a stage where I do not need them. However, for the moment, I understand that they are what make it possible for me to parent the best I can, to be able to socialise a little and to get through the day. While it is undeniable that there have been incredible cases of harm done by overprescribing doctors in some cases, to paint all users of these drugs as addicts who don’t need them is wrong and harmful.
Y is for Youth
Or rather “You’re too young to be this sick”. This statement absolutely infuriates me, in particular when I get it from doctors who are doubting that my symptoms are actually real. It seems to be a common thread among other young people who are living with chronic illness, so it isn’t just the doctors I’ve come across. It appears that medical schools may not be teaching doctors that illness doesn’t always check your ID before parking itself on your immune system.
This extra layer of having to fight to be believed because the general “target age” of your illness is about thirty years older than you is stressful and unnecessary. I absolutely wish that my body would get the message that it’s way too young to feel like this. Until that day comes, I wish that doctors would quit the “you’re too young” talk and just work with me to make me feel better.
Z is for Zebras
“When you hear hoofbeats, think horses, not zebras”. That’s a medical maxim quoted a lot by doctors, meaning go for the most obvious diagnosis, not the outlier. Unfortunately, quite a lot of the diagnostic part of chronic illnesses, in particular, the ones that are invisible, can be full of zebra hoofs clanging about. In my experience, the horse hoofs have come and gone and the diagnosis has gone away with them. Sometimes, you’re just the outlier, and it takes a while to get that diagnosis down.
So, there we have it, an A-Z of life with Chronic Pain and Chronic Illness. Some of those letters might be a little bit sketchy (there’s certain ones which were harder than others at the end!) but I got there. Let me know what you think, either in the comments or over on Facebook, Twitter or Instagram – I would love to hear your suggestions and ideas!