How Am I Supposed To Love A Body Like This?

If you want to include both my battle with endometriosis and with an autoimmune condition, I have been fighting my body, and medical professionals, for ten long years. Ten years of chronic pain, chronic illness, and chronic anger towards my body for never giving me any relief.

With Endometriosis comes not only extremely painful periods, but also back pain, urinary tract infections, diarrhea, constipation, nausea, extreme mood swings, pelvic pain all month long, fatigue, general malaise – and the list goes on and on.

With my autoimmune condition comes chronic fatigue & malaise, severe chest pain & palpitations (occasionally landing me in the ER,) tachycardia, panic attacks, muscle pain, joint pain, chronic migraines, brain fog, muscle weakness, rashes, and just a general lack of discomfort and feeling like shit to be honest.

So, how does one love their body, when their body only ever causes them distress and discomfort on a daily basis? It’s not easy – it usually feels impossible. I spend so much time pushing through the pain and illness every day, that I’m left feeling extremely pissed off and frustrated with my body. Why can’t you be pain free for just one day? Why can’t you let me live my life? Why do you have to take everything from me? Why can’t you give me a break?

One day it occurred to me, as I looked at myself in the mirror, that I had started feeling separate from my body because I spent all of my time fighting it. It was no longer a part of myself, but instead a monster that I had to slay. That one thought shocked me. This sounds ridiculous, but I stood there and had to touch my arms, my face, my neck, my stomach, and my legs, just to feel connected to my own body again. To remind myself that it’s a part of me and that I still need to love and care for it.

So started my self care regime. Pilates twice a week, higher quality skin and hair care, meditation, walking every day, and most importantly, attending each doctors appointment with the goal to fight FOR my body, rather than against it.

It’s not really enough just to dutifully take our medications, just to push through pain and deal with the frustration and anger, to let ourselves hate the very part of us that keeps us alive and who we are. Our broken bodies aren’t actually stopping us from living our lives – they’re giving us the ability to keep living it, even if limited.

So keep caring for your body, no matter how broken it may seem. Stay connected to it and keep loving it. Nobody can love and fight for our bodies like we can. ❤

To the Chronically Ill Mother

Yesterday I was babysitting my niece (1) and nephew (3) all day. I loved hanging out with them, but I got a new insight into what it’s like to have kids when you have a chronic illness.

Children never stop. Ever. They’re little balls of energy, addictive and adorable, but oh so exhausting after a while! I can honestly say that the longest and most stressful day at work never amounted to a full day looking after little kids. Not in the sense that it was stressful, but just how much it takes out of you.

Now, my glimpse at life as a mother was tiny, but told me so much. I probably managed to go to the bathroom once all day, and had to eat quickly while they were distracted with their own food. I cooked dinner with my niece in one arm while trying to allow my nephew to help prep the veggies without hurting himself and without actually letting the food burn. Then I gave them both a bubble bath after changing the nappy of my 1 year old niece, that was so full that I just couldn’t believe such a little human could produce so much poop!

The noise – they were ‘chatting’ and making noises all day, while constantly demanding attention and forever moving. They wanted to go outside, then inside, then outside. Then eat, poop, play, watch TV – rinse and repeat!

For all mothers out there – I have the utmost respect for you. I can’t wait to become a mother myself, but man I could see the struggle you all go through on a daily basis. Any man that says “you were at home all day, why didn’t you get anything done?” – I will personally kick you all in the balls.

Now, to the mother with chronic illness – that’s a whole other level of respect I have for you! To the mothers suffering with an autoimmune condition, chronic fatigue, diabetes, arthritis, even cancer – you are an absolute SUPER MUM! To suffer through daily fatigue, pain, nausea, digestive issues, chest pain, dizziness, insomnia, and a whole other gigantic list of issues, and STILL be able to push through all that and look after your children in the way they deserve. You deserve a god damn medal!

You don’t have time for yourself, not even a second. Not when your little babies are demanding all of it. You put yourself second ALWAYS, and I think that takes incredible strength. Self care has probably become a distant memory for you, but I still feel like it’s so important, no matter your circumstances. You need to look after yourself, to be able to look after your little ones.

For everyone else out there without children – I think it’s important to offer some support and have some more understanding on what mothers in general go through, let alone mothers who are chronically ill. Offer them an extra hand, watch their kids for half an hour while they shower and wash their hair – every little bit helps. Offer them the self care time they so desperately need. This goes for all mothers, not just the chronically ill.

But pay extra attention to those with chronic illness or pain. Extra attention to how they’re coping mentally as well as physically. I myself spent the entire day today in bed recovering, and my condition is no where near as severe as some others.

To the chronically ill mother – I see you. I think you’re incredible. Please don’t feel guilty for something you cannot help, please see that you’re doing an amazing job and pushing through so much more than anyone should have to. You’re a good mother and you’re a strong woman.

Feeding the Stigma

This is entirely my fault. For two years I have been suffering with health issues and chronic widespread pain, spending thousands of dollars on appointments, tests, medications, hospital visits and surgery. Unable to work full time or have a normal social life.

And apparantly unable to let my own family in on this huge life changing illness. Whoops! 🤦‍♀️

I made an assumption. A stupid one. You know what they say when you assume, right? I did that. I made an ass out of u & me. Or them and me, if you want to get technical.

My mum and dad knew most of the details, so I had just assumed they would have let everyone else know. I kept the details close to my heart, not wanting anyone to know how much I was really struggling, but hoping my parents would give them the general gist.

Apparently they didn’t. And so, two years after this all started, my brother and sister-in-law asked me why I had resigned from my job and what was going on with my health. When I mentioned my migraines, my possible Lupus diagnosis, my brother asked if that’s the reason I go to bed insanely early, like a light bulb just went off in his brain and everything suddenly made sense. Because guess what? Everything suddenly DID make sense! When you actually explain the facts to people, first hand, everything falls into place. Funny that!

Now, after that conversation, I realise that I’m guilty of exactly what I’ve been ‘preaching’ against! Not talking openly to my own family for fear of judgement and simply hoping someone else would do my dirty work hasn’t done me, or them, any favours. Sure, judgement is a part of life. So why are we so scared of it? I think that’s a hard one, because we don’t want to know the people we love the most don’t understand what we’re going through. That’s so damn isolating!

But they didn’t judge, even if they didn’t fully empathise with my situation. They just wanted to know, to understand. Because they’re my family, and they love and care for me. It seems so crazy to me now that I didn’t trust in that.

I’ve heard people say there’s no stigma with chronic illness, only with mental illness. But I disagree. There is a stigma, if there wasn’t I wouldn’t have been so scared of judgement. That fear had come from somewhere, and it caused me to hide what I should have been sharing as abundantly as possible. The stigma is based around chronic, invisible, undiagnosed illnesses. Am I making it up? Bunging it on?

Every time someone asks me how I am, genuinely wanting to know if I’m okay, my response is always “I’m okay. Same old.” I kick myself every time. What does that even mean?! Same old? REALLY? Just tell them the truth, that I’m struggling with migraines and I’m tired of pushing through. That I’m desperate for a break. That I’m trapped in a body that’s constantly in pain and all I want to do is live my life. That I HATE that I had to quit my job.

THAT’S the truth I should be telling. So why is it so difficult? My fear is damaging not only to myself, but to everyone else.

I’ve been totally honest with all these strangers via my blog – but not with my own flesh and blood. Maybe it’s easier to face being judged by strangers, than by those we love. Maybe it’s less scary – less hurtful. But I am causing harm nonetheless. I am unintentionally feeding a stigma.

Well… No more. I AM SICK. I am a barely functionally, chronically sick person. I go to bed at 5pm because I’m bone achingly tired and I’m trying to beat my migraine by going to bed before the pain gets too bad. I avoid social outings because I’m scared I’ll have to leave early which either forces my boyfriend to have to leave early with me or forces me to either explain the truth to everyone or make up a lie. I’m not sure which is worse. I can’t work full time because I’m physically and mentally exhausted from having to push through daily pain. I’m terrified of doctors visits because I’m tired of being told that they can’t figure out exactly what’s wrong, and I’m embarrassed every time I have to explain that fact to everyone else waiting to hear my diagnosis. I’m dead broke, partly because I can’t work enough and partly because doctors, medications and tests are SO expensive. I hide my pain and fatigue until it’s really bad simply because I’m tired of complaining. I hide pain from my own boyfriend who just recently said “how come you don’t get migraines on weekends?” Ha! Well, I do. I just medicate more and push through it more so that he won’t see the full extent of how broken his girlfriend is. Even though I know he’d understand, I’m scared that maybe one day he won’t anymore. I work every day to protect myself both physically and mentally.

I’m a sister, a girlfriend, a daughter, a friend. I’m a person – and I’m chronically ill. Welcome to Laura in real life.

The Importance of Mental Health in Chronic Illness

For most people with a chronic illness, there comes with it a care plan that includes multiple specialists. One of these specialists is a psychologist. This makes complete sense, given the toll it takes on the person, body and mind.

However, I hadn’t really been thinking much about it lately, just going along with the flow. Going to each doctors visit and every specialist like a good little patient, without really thinking about what each of them means in my care plan. I hadn’t received the answers I needed from any of them, so I stopped expecting anything from them, and in turn stopped reaping any benefits.

I just kept going to the appointments, adjusting my medications as instructed, doing whatever else they told me, in a numb like zombie state. I thought I had simply accepted my lack of diagnosis and was going on with life, but really I was avoiding feeling that constant frustration, disappointment and guilt.

With my health condition (which may or may not be Lupus) comes many symptoms and many obstacles – the latest being chronic (almost daily) migraines. Even if I don’t have a full blown migraine, I do have some degree of head pain or malaise. If you have never had a migraine, imagine something that caused you horrible pain… Like menstrual cramps or being kicked in the balls (sorry boys.) Now imagine feeling that pain on varying levels daily… It would become kind of hard to think about anything else, right?

That’s what I realised was happening to me as I sat in front of my psychologist after not having seen her for 3 months. I realised in all my effort to look after my physical health, I had actually forgotten something just as important – my mental health.

Now imagine this – I’m sitting in front of a highly experienced clinical psychologist, with 24 years of experience and a PhD. After approximately 40 minutes of her trying to find out what’s been going on in my life and how I’d been feeling, she actually laughed at how difficult it was to get an answer. She was so stumped that she actually laughed, in a very awkward way. I’d once been told many years ago by a different psychologist that getting information from me was like getting blood from a stone. In this moment, I finally understood her frustration.

Now, let me be clear, I wasn’t intentionally being difficult. I’m a very honest person. If I had known how I’d been feeling lately, I most definitely would have shared it with her. But the thing is, I hadn’t thought about it much. When she asked me how I’d been feeling, the only answer that came to mind was physical pain – which wasn’t actually what she was asking about. But when I tried to think about emotions in regards to any situation we had just been talking about, my mind actually went completely blank!

We did get somewhere in the end, she managed to get one emotion out of me and we managed to get to the root of it. All in the last 5 minutes – proving what a skilled doctor she is! But the entire session did actually highlight one major issue to me, and probably to her. That I was not looking after my mental health in the slightest. I was… I AM, so consumed by my physical health, and in my chronic pain, that I completely overlooked my mental health.

That is an incredible mistake – one I’ve never made before. I was genuinely shocked by this revelation.

This highlighted for me the importance of managing your mental health, even while in the midst of a physical health debacle – ESPECIALLY while in the midst of a physical health debacle. Both physical and mental health go hand in hand, and one most certainly can affect the other.

This brings me briefly to the topic of trauma. One would expect trauma to come in the form of a car accident or abuse – but it can also come in the form of an illness. During or after a trauma, people can experience a kind of ‘numbing’ effect (I don’t know the exact clinical term.) This is something I’ve experienced in the past, so I was deeply surprised that I had slipped up and forgotten to focus on something so important.

This is something that should be remembered not only for those suffering from any kind of chronic illness, but also for their loved ones. There is a VERY good reason why psychology plays a part in our care plans, and it’s not something we should be taking a part in just for the sake of it. If you’re going to look after your health, look after ALL of it. If you’re going to check in on someone suffering from a chronic illness, ask them how they’re feeling emotionally also. It may just be the reminder they need.

I don’t want to complain…

I don’t like complaining, and I don’t want to complain anymore. I really don’t. I don’t like seeing the looks on people’s faces thinking “she’s complaining yet again.” Seeing the looks of frustration and simply being ‘over’ hearing about my health issues. But guess what, feeling sick every day has become my life at the moment, and I didn’t choose it, nor do I enjoy it. And sometimes, I just need to vent and complain. Because it downright sucks!

Feeling sick or being in pain every day isn’t something I EVER wanted. It’s exhausting and frustrating to say the least. Especially when all I want to do is live my life, to be the bubbly and energetic girl I used to be. I’m a ball of energy trapped inside a failing body. I suspect this is a lot what prison feels like, an actual life sentence.

All that being said, let me rephrase my earlier statement. I don’t want to HAVE to complain anymore. You’re tired of hearing me complain? That’s NOTHING compared to the frustration I feel on a daily basis.

I can see it when people ask me how I am. They sound sincere when they ask, and I’m simply a really honest person, an open book really. So I answer them. “I’ve been better. I had a migraine all night.” And I see their eyes glaze over. They don’t want to hear that, they wanted me to say the perfunctory “I’m good thanks, how are you?” They want me to pretend so we can move on to more interesting topics of conversation, like hair and nails and which party they went to on the weekend.

So I started doing that. I started saying “I’m okay,” even when I’m not. Even when I’m home, achingly exhausted, dizzy, overcome with nausea and trying desperately to push through this migraine. I’m still “okay.” Every day that I work is a struggle. Staring at a computer screen all day under constant fluorescent lighting, struggling through fatigue and fighting off the pain with medication that is only going to cause worse side effects later on. But I still answer “I’m okay.” When I finally complain, it means I’ve really hit that wall of not being able to even pretend anymore.

But this tactic is damaging. It isolates those of us suffering with any kind of chronic illness, whether it be physical or mental. Anxiety or migraines. Depression or Chronic Fatigue. It applies to all illnesses. The less we talk about it, the more the stigma grows, the more people think we’re just bunging it on. It’s not good for us, and it’s not good for them. How can they understand better, how can they gain any awareness, if we’re constantly holding back what we’re going through?

That being said, we have good reason to hold back. Because of those people who don’t actually care to hear how we’re going, those people that instilled that fear in us.

You think I like the attention? Here’s the truth, I would give ANYTHING to not be sick anymore. If I wanted attention, I’d just run down the street in the nude, I wouldn’t need to be ill to get it. I’ve had to quit my job, a job that I loved that had become like a home and second family to me. I quit, purely so I could focus on my health and attempt to get it back on track. So that I could go back to living my life. It was not an easy decision, or a happy one.

If I just wanted attention, do you really think I would have done something so drastic? My complaints are annoying for you, but the reason I’m complaining is a LOT more ‘annoying’ for me. So remember that the next time my need to vent is a drain on your day. Remember that any time ANYONE with an illness of any kind is needing to vent. They’re struggling hard, the least you can do is endure listening to them, and maybe, just maybe, giving them some semblance of relief because you ACTUALLY cared. It’s not hard to be kind, especially if you just put yourself in someone else’s shoes for 5 minutes. Especially if you step out of your bubble and see the pain that surrounds so many people in the world.

Let’s be real. Speak up more when you’re struggling, break the stigma. Complain whenever you feel the need to complain. Vent, get it all out. Force people to hear you and to see the truth. Help them understand. If they get bored, if they don’t care… Well, fuck em! From here on out, I make no apologies for voicing my pain.

Chronic Fatigue vs Tiredness

This morning I woke up and called in sick because I was too tired. That’s right, I was too tired. The actual term I used was fatigue, but when people don’t know the difference, it just sounds exactly like I’m saying “I’m too tired.”

With this lack of understanding in mind, I could have chosen to lie and make up another reason. But that’s just not who I am, I’m not going to do that to a manager and a company that trusts me, regardless of how it makes me look. Lucky for me, my manager is very understanding of my current situation.

Unlucky for me… Many other people are not. This is what the Mayo Clinic has to say about chronic fatigue.

“Nearly everyone is overtired or overworked from time to time. Such instances of temporary fatigue usually have an identifiable cause and a likely remedy.

Unrelenting exhaustion, on the other hand, lasts longer, is more profound and isn’t relieved by rest. It’s a nearly constant state of weariness that develops over time and reduces your energy, motivation and concentration. Fatigue at this level impacts your emotional and psychological well-being, too.”

This is what I have to say about chronic fatigue.

I’ve been struggling with this as a part of my condition for about 2 years. How does it make me feel? A bit sleepy, a bit lazy? No, it makes me feel bone crushingly exhausted. This morning when I woke up to attempt to get ready for work, taking a mere shower felt like the most physically grueling thing that I’d ever had to do. I was breathless, hunched over, and mentally forcing myself to make it through washing my hair. Good lordy, talk about a battle and a half. I would have plopped down on the shower floor if I could remember the last time I’d cleaned it!

I proceeded to crawl back into bed and try to convince myself to finish getting ready for work. It wasn’t happening. I proceeded to message my manager and go back to sleep… Which resulted in a 17 hour sleep if you include my night time sleep. Would you say requiring 17 hours of sleep is simply being tired? I literally slept for the amount of time that most people spend awake, after a reasonably chilled and relaxing weekend. That’s not ‘just tired’.

There are times when I’m walking somewhere with Aiden, a nice casual stroll, and I’m gripping and dragging down his hand as I struggle to get from A to B. His hand becomes my life line, and he is left dragging extra weight around. There are also often times that it affects my cognitive function, where I find it difficult to think or sometimes even speak. That is called brain fog (as explained in a previous post.) Sometimes it hits me so hard and fast that I barely know what’s happening.

Just last Wednesday I was hit so hard with fatigue and debilitating sudden sleepiness, that I couldn’t stand up during Pilates. Driving home from that sessions was borderline dangerous… Actually, not even borderline, it WAS so dangerous! Driving, a simple every day task that we’re all used to, could get me killed because of my fatigue. I find that genuinely terrifying to the point where I generally refuse to drive anywhere over half an hour away.

Occasionally my fatigue makes it hard for me to even eat, no matter how hungry I am. I could feel starving, but the second I put food near my mouth, my stomach and entire body revolts against me. How can it be too much effort to chew and swallow food?!

So please understand why I get irritable, please understand why it’s hard to hear “I’m tired too” when I’m struggling with that. Don’t get me wrong, being tired actually does suck in any situation, but it’s still not the same thing as being chronically fatigued.

I would also like to point out that this is just my experience with chronic fatigue as a secondary symptom of another illness. In other cases, chronic fatigue itself can be because of it’s own syndrome actually known as Chronic Fatigue Syndrome, or Myalgic Encephalomyelitis (ME/CFS.) Fatigue in so many of these cases can be SO much worse than what I’m describing. I truly feel for anyone battling with that ❤