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. ❤

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.

Waiting Room

I’m sitting here waiting to see yet another specialist. What number is this? Probably at least my tenth since last year. These days, doctor shopping is necessary. After all, they’re only human, they can’t know it all!

As I sit here waiting, I feel a few things. One is exhaustion – I had a horrible sleep last night as usual from pain and anxiety about today’s pending appointment. Which brings me to the next thing I’m feeling – anxious. Every time I sit in a waiting room my palms sweat, my heart races, and I get lightheaded. I feel pure dread for what’s to come. Answering the same questions over and over again, explaining my symptoms to yet another doctor that may not have any answers, that may send me on my merry way with a good old “sorry I couldn’t help. Hope you feel better soon!”…Really?!

Dismissal – it’s not something any of us like to feel. Let alone those of us who are chronically ill and seeking help from the only people in the world with the ability to do so… And quite often even they can’t do that.

So how do we deal with this time and time again? It’s simple – we just do. I don’t want to toot my own horn, but it takes a hell of a lot of strength to do this over and over again on your own, and I say that for everyone who’s been through this. To be rejected so many times. To be made to feel crazy simply because they can’t explain your mystery illness and symptoms. I don’t fit into the text book definition of anything, and that’s the unfortunate truth for so many others.

I’m scared and exhausted from this entire process. And yet, that final thing I always feel while sitting here in the waiting room, is hope. Hope that this doctor will be the one that can crack the mystery, that can confidently say they’ve seen this before and know exactly what’s going on and how to help me.

Now from my point of view, I think I have it pretty easy compared to so many others. And I have to say, I admire all of you who are struggling through, so so much! You deserve all the credit in the world, and more.

Another day, another waiting room. Keep fighting peeps, we’re with you.

18.09.10 – Paying the price!

Today I write to you from bed… And not in a good way.

Last night I went out to dinner with my boyfriend’s family, and I managed to stay out past 8pm. *Insert gasp here*

Now, while that is perfectly normal for anybody with a nice healthy body not intent on screwing them over on a daily basis, for me that is inconceivable! My nightly migraines over the last 2 months have made it quite impossible to stay out past 6pm, and have even made people concerned for my mental health.

I mean hey, if your brain was throbbing against your skull and every little noise made your eyeball feel like an ice pick was going through it, I think you may be slightly irritable and in need of peace and quiet also… Not meaning to be captain obvious, but just saying!

So here I am, at 2:41 on a Wednesday afternoon, just having woken up after a 2.5 hour nap. Wanna know why? Because one hour of Pilates was too much for me after such a HUGE night of partying. *Rolls eyes*

I mean seriously, who nearly falls asleep doing ab curls? They’re not exactly what you call ‘easy’ or ‘relaxing’. But my body was experiencing that bone deep exhaustion and was ready for a nap, and it certainly wasn’t going to wait for anyone!

Okay, so why am I sharing this with you? It may be a boring day in the life of Laura, but it is an unfortunately common one. A reality that has forced me to suddenly take a few weeks off work just to cope with the pain and fatigue that plagues me. I am simply sharing this with you, so that you see me in real life, so that you see all who are struggling!

To those of you fighting to get through the day without a coma-nap… I see you, empathise with you, and I give a f**k. It’s okay to take a moment to rest, it’s okay to allow yourself time to heal.

Until next time!