The Social Anxiety that comes with Chronic Illness

I don’t trust my body – not even a little bit. I don’t know how I’m going to feel at any given moment. It’s unpredictable, to say the least.

Now, you might be thinking, “isn’t that the same for everyone?” To some extent yes, but not like this. I’m sick every single day to some degree. Maybe it will just be mild fatigue and a lingering headache, maybe my chest pain will get so bad I’ll end up in hospital, maybe my fatigue will leave me bed ridden… I have absolutely no idea.

I can’t make plans, not really. I accept plans with the usual “but it all depends on how I’m feeling on the day.” Because, let’s be real, I have NO idea if I’ll be able to make those plans or not. In fact, I’d say it’s more likely that I’ll have to cancel. Which fills me with no end of anxiety and guilt.

I love my friends, I love my family, I love my boyfriend. I WANT to spend time with them – and yet, my body doesn’t always let me. My Pilates instructor even took me off weekly lists, and assumes I’ll just turn up when I’m able.

This is frustrating for everyone, including myself. ESPECIALLY myself. I’ve seen friends distance themselves, stop inviting me anywhere, and just lost friends in general. They’re not bad people, they just didn’t understand and took my flakiness for not caring, and I don’t blame them one bit. I understand that chronic illnesses are hard for people to understand unless you’ve been through it, I really do. BUT, it doesn’t make it hurt any less.

This is the social battle every person with a chronic illness must go through at some stage. Do we go to that social event, knowing that we will pay for it tomorrow, and probably for days to come? How do we pick and choose which social engagements to go to each week, how can we spread them out? Why, oh why, can I not just have my body back so that I can go to ALL social engagements and not have to lose sleep over this petty shit anymore?

It really goes beyond that though. It becomes a deep fear to even leave the house. You start thinking about things no one else would. Like – how can I leave at any given moment if I need to without drawing attention? How far from home is this plan, if I get a migraine how long will it take me to rush home? If I go to that persons house, will my stomach rebel against me and leave me in a deeply embarrassing situation? Do I have all my medications, comfy clothing, water bottle? Then if we do end up going, it’s rare we even have fun because we’re too busy worrying or pushing through whatever symptoms we’re dealing with that day.

It is so damn EXHAUSTING!

And so, we stop planning anything. We stop even accepting plans that are further than a half hour drive from home, or any plans that might be over night. We simply stop making plans.

How lonely is that?

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.

My Diabetes Story – In a Nutshell

By Tara Van Neilson

“I don’t deserve diabetes!” is all I remember saying to myself as I lay in the hospital bed.  I was a young, relatively fit, and healthy 19-year-old. No family history of diabetes and my whole life ahead of me. I was broken and hysterical – I needed a sedative as I broke into tears realising my life would never be the same.

A couple of weeks prior to being admitted into hospital I had been very unwell. I was constantly dehydrated, unable to ever satisfy my thirst, I was weeing throughout the night, I was eating heaps and losing weight (that bit was awesome, I lost 10 kilos in 3 weeks without doing much exercise! Amazing right?!) I wasn’t terribly concerned until I was exhausted, until I couldn’t get out of bed and finally said to my parents I think something is seriously wrong. I don’t think my parents were overly concerned either, but they took me to the local GP anyways. The Doc offered to do a finger prick, but I was too scared of the pain from this simple test so instead of doing the finger prick he gave me medication for type two diabetes. A completely different disease. I went home with the medication, then I was violently ill. My parents took me back again and demanded a different doctor. This doctor insisted on a finger prick and I obliged this time. My Blood Glucose Level (BGL) was 30! A “normal” BGL for a “normal” person is between 4-5.4. My parents rushed me to hospital where I was admitted immediately. I was bombarded with questions, do you smoke, do you drink, do you do drugs, is there a family history of diabetes??  No, yes, no, no. Well you’ll have to stop drinking.

After 4 days in hospital and learning to test my sugar by pricking my finger and injecting insulin, I was released back into the world, the real world. That first night back at home, mum yelled out that dinner was ready. This was it, I had to inject my insulin all by myself. It took me ages to be able to do it, it goes against every grain in your body to inject yourself with a needle (EpiPen, but still). Mum yelled out again, and I knew I had to do it.

I spent the following years in denial. I didn’t want to be known as a diabetic, I didn’t want it to be part of my identity. I hid my diabetes from most people, would only test or inject in the privacy of a bathroom or my car. I felt embarrassed and ashamed by my diabetes, I didn’t want people to think I was broken. So, I went about my life as usual – going to Uni, having wild nights out like any young 20 something, only doing the bare minimum to keep my myself alive. I hid it from people I was dating. I even hid it from my now husband. I thought he would think I was disgusting and dump me for a working and fully functional model. He didn’t.

Looking back on those years now I realise how stupid I was, the risks I took, going out without backup jellybeans, drinking excessively, having extreme high BGLs, not testing for hours on end. Diabetes is serious and can be dangerous. Incorrect carb counting, too much insulin, too less insulin, exercise, stress, heat, cold, staying up late, injecting before or after eating, being sick, hormonal changes through the menstrual cycle or being tired all affect BGLs. And next minute you could be dropping so quickly you turn into a primitive animal and feel the urgent need to take all your clothes off in the kitchen and consume copious amount of milo and dried apricots (you don’t get to pick what you crave in these emergencies). It’s so critical to manage BGLs to avoid the long-term health complications that can develop from poor control: Cataracts, blindness, kidney disease, nerve damage, heart disease and my specialists’ favourite: amputations.

Diabetes affects everything, and no surprise, can cause depression and anxiety. I find myself feeling anxious about doing new things, like going somewhere I haven’t been before because I don’t know how far will I be walking, when will we be eating, what will we be eating, where can I test my sugar and inject my insulin? I remember being so consumed before my wedding day about how I was going to manage my diabetes on the day. I didn’t have a bag, where was I going to keep all my diabetes paraphernalia nearby but out of sight, how was I going to prick my finger to test my sugar without getting blood on my white dress (blood goes everywhere) or inject my insulin with this massive dress on?

And there’s no rest. Not even while your sleeping. Before bed I test my BGL to check I’m at a “good” number. Too low and I need to have something to eat, too high, more insulin, but will that drop my sugar too low overnight? Sometimes I’ll have a nightmare (a common symptom for type one diabetics) and test my sugar to realise I’m low or going low and have to eat a bowl of cereal in the middle of the night. Other times my BGL has shot up over 20 and I have no idea why and I have to give myself insulin while trying not to wake up my husband.

Diabetes is all consuming, even while I write this I had to get myself a glass of orange juice to keep my BGLs stable. There’s no breaks, every minute or every hour is spent thinking about diabetes, how many carbs in that, how much insulin should I give, have I had enough to eat to go for a little walk, do I have too much insulin stored that will be released all at once if I go for a walk, do I have jellybeans and a juice box in my bag. It affects every facet of my life and there’s even some jobs I’ll never be able to do because the nature of the jobs wouldn’t be safe with diabetes. For example, being a police officer, ambulance or army officer to name a few. Due to the fast paced and sporadic type of work carried out, attending to your own diabetic needs could affect your ability to perform your job effectively. Imagine having to stop what you’re doing to test your sugar, have some jellybeans, wait for those to take effect then continue on during an arrest, during a resuscitation, during an ambush? Not to say there aren’t diabetics doing these jobs, because there are, but the advice I’ve received is that these are not suitable occupations for type one diabetics.

Then there’s pregnancy AND diabetes. Pregnancy is tough for a lot of women, managing diabetes on top of that was a nightmare for me. However, being pregnant was probably the first time since having diabetes that I finally started to take it seriously. Because if I didn’t, someone else was going to be affected, and like any new mum, I wanted to give my unborn child the best start in life possible and not be impacted by my inability to manage my BGLS. I didn’t enjoy any part of being pregnant because my entire pregnancy was consumed with managing my diabetes so my baby wouldn’t be born with a cleft palate or Spinabifida. I tried my very best to manage my BGLs, I was counting every carb, I was writing down everything I ate, how many units of insulin and any other detail the endocrinologists wanted and sending that to them every week at the hospitals’ clinic. And every week I would get different feedback – do this, change this dose, what happened at 4:15pm on Wednesday night, why did you eat two bowls of cereal? I was still a pregnant woman, I still had insane cravings. Then one routine visit to the clinic at 36 weeks, the cgt revealed the baby had stopped moving as frequently. I had to stay overnight for observation. The next day, following another cgt, it was decided I would be having a caesarean, that afternoon. I was devastated. I had endured weeks of prenatal yoga, listened to podcasts, and had planned a natural water birth. I hadn’t really considered having a caesarean, and now I was having one, that afternoon. My husband was still at home trying to finish off our renovations. We thought we had one more month before bub was coming. I sobbed hysterically through the caesarean then a puffy pink wrinkly baby was presented to me from over the curtain, she screamed and was rushed off to the special care unit.

One year on, she appears to be a healthy baby, doing all the things a 1 year old should.

Technology has improved drastically over the years. I no longer have to finger prick very couple of hours as I have a flash monitor which sticks to my arm and I can scan anytime, as many times as I like with a scanner or my Iphone. I put off getting the sensor for a while as I was embarrassed to wear the device – it’s pretty visible on your upper arm and I’ve had lots of people ask what it is. I bought quite a few new tops with longer sleeves to cover it up and threw out others that had no sleeves at all, because I’m still self-conscious about it, like I’ve got some sort of contagious disease and this white round disk indicates that.

Not my arm – just a picture from the internet.

Even though I’ve been a diabetic for 10 years, I’m still not okay with having diabetes. I don’t want people to think of me as a diabetic. I feel there’s so much more to me than my lazy, useless, good for nothing pancreas. I don’t want to be defined by my diabetes, I don’t feel like it’s part of my identity, even though it is.

By Tara Van Nielson

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.

“If you gain 3 kilos, all your problems will go away.”

“I truly believe that if you gain 3 kilos, all your problems will go away.”

That’s not something I EVER expected to hear from a doctor. Especially a very experienced professor in Endocrinology, highly recommended by a few of my other specialists. Especially after I had explained in detail over the course of an hour that I had always been this shape and that the rest of my family was the same.

I’ve always been a skinny girl, and trust me, it’s not from lack of trying to gain weight. My diet has consisted of carbs and chocolate since I was a little girl. Pasta, bread, potatoes, bagels, rice, they’re all my favourite things! I’ll choose a burger or a pizza over a salad any day! And yet, here I stand, 172cm and 52 kilos.

Growing up I had several doctors ask me if I eat. And that ALWAYS confused me so much. Of course I eat, what a ridiculous question! In fact, I never stop eating! I graze all day long, and that’s never changed. Though when I look back at photos, I do see why they were concerned at the time. I was VERY thin.

But looking at myself now, I don’t think I look sickly skinny to the point where a doctor would blame all my health issues on a measly 3 kilos!

When my health first took a turn for the worst, I lost 6 kilos. I dropped down from 54 to 48 kilos. It was noticeable to everyone and I often heard people talking about how thin I’d become. But there wasn’t much I could do about that. My GP told me to eat whatever I feel like whenever I feel like it to try put the weight back on until I could yet my appetite back.

And I did. I became a huge fan of cheesecake, and relished in the idea of being able to eat it all day guilt free. And I put 4 kilos back on. Back to an average weight for myself. Awesome! Now if I could gain those extra 2 kilos back, it was really just a bonus, but no biggie for the moment.

So when I finally saw this professor, back at my normal weight, and explained all this, hearing him tell me that all my health issues would go away if I gained an extra 3 kilos brought up a lot of questions for me.

Why 3 kilos? If I’ve always been this weight but been healthy previously, why is my weight an issue now? Are you really allowed to promise me such a thing? Are you dense?

All those questions and more were running through my head. It was absurd to me! And yet, when I got home and mentioned this seemingly crazy doctors prognosis to a few people, they agreed with him.

WTF?!

Suddenly everyone around me was telling to me gain weight and then I’d feel all better, watching what I ate and telling me to eat more. Like I hadn’t spent years trying to gain weight with no success, like I could just force myself to shovel in more food, like my metabolism would just change in an instant. Had everyone lost their god damn minds?! I couldn’t figure out what on earth was going on.

But later on I realised. These people care about me, and saw me go from a healthy and energetic 28 year old, to a sick girl who barely had the energy to go to work, kept ending up in emergency, had shed 6 kilos in no time at all, and suddenly had a whole other list of issues that no one could understand or explain. And they hear me come home and tell them that a doctor gave me an answer, and they clung to it. I understand that.

What I don’t understand is a highly experience professor making false promises to a woman with health issues simply because it would hurt his ego to admit he couldn’t figure out what was going on. What’s more is that it’s dangerous for a someone in his position to ever do that without the relevant tests to back up that claim, and to rule out anything sinister.

Guess what Dr Dense, I went to Fiji and gained those 3 kilos, and not one thing changed (shocker.) If anything, my health has deteriorated in the last year since I’ve seen you.

It truly scares me that he dismissed me so carelessly. How many other people has he done this to? With a reputation like his, I like to hope it’s very few. But with a reputation like his, it makes it all the more dangerous if he was saying this to other people. Other people who might believe him and not look further into their health.

There’s two things I took from that experience. Doctors are human and make mistakes too, and second opinions are not only acceptable, but crucial.

Exercise – The Miracle Cure

Exercise is great, isn’t it? It can relieve and prevent all matters of ailments, especially stress.

Have you ever been feeling emotions so wild and confusing that the only way to relieve them is through exercise? Go for a jog, a long vigorous walk, beat up the punching bag, get the endorphins pumping through your veins.

I admit, I used to be a sucker for it myself. There is no better and healthier way to relieve stress and help yourself to feel better. It truly is amazing.

So what if, for some reason, you couldn’t do that anymore? You’re frustrated or anxious, but you can’t run it off. You’re angry, furious even, but you can’t just punch the bag for a while. Is that a whole other kind of torture, or what?

Well… Welcome to my life, and the lives of so many others with chronic illnesses.

I often hear “maybe you should exercise more,” and man that hurts. A) if exercise could cure me, I’d be be spending every day doing exactly that. And B) anyone who’s ever suffered this kind of illness would know that exercise can quite often make matters worse.

Last night I was feeling the frustration of this. I was having one of those days where I felt down, I felt anxious, I felt angry, I felt a whole lot of things relating to the burden of feeling sick every day. I felt the weight of pushing through normal every day life when all my body wants to do is hide away and rest.

And you know what I REALLY wanted to do? I wanted to punch a punching bag or a good hour while I blast some music. Or go for a long run that makes you feel exhausted in the good kind of way. But the sad fact is, the only ‘sporting’ activities I can do at the moment are Pilates, Archery and short walks. I’ve found a real release in Pilates, it does take my mind off a lot and allows me to care for and strengthen my body, rather than fight it every second of every day. And Archery is also a great distraction, plus shooting an arrow at a target can release some pent up anger 😛

But it’s not really the same. Not for the tumultuous emotions you can feel at any given moment when every moment out of bed is a physical effort, and when you feel isolated and maybe even a little judged.

I just want to go for a run, but it will hurt later. It will cause the next few days to be worse than they need to be. To put it simply, fatigue will be kicking my ass, and those physical symptoms that were causing my stormy emotions in the first place will be ten times worse. So what’s the point?

That being said, exercise is great for so many health conditions, mental and physical, including your heart health and relieving anxiety. I used to walk every single day before all of this, and I loved it. If you can exercise, you most definitely be doing it! But also try to have a little bit of empathy for those of us that can’t at the moment. We’re not being lazy, we’re just struggling more than you can see.

Photo by Fitsum Admasu on Unsplash

The ‘C’ Word

It feels a bit strange to be writing this on my way to work. Like something so terrifying deserves a different setting. But when is the right time to talk about a cancer scare? I suppose there isn’t one.

So here goes nothing!

Just over a year ago I had my first real cancer scare. I didn’t tell anyone at the time, except my boyfriend. Not until after I knew it definitely wasn’t cancer. And even then I didn’t let him in on how scared I was or what I was really going through.

After a visit with my Endocrinologist, she suggested I take a 24 hour urine sample. Yes, it’s as gross as it sounds. The hospital gave me a giant bottle filled with a little bit of acid, and for 24 hours straight I had to collect my urine every time I used the bathroom. I used an old (but clean) ice-cream container before pouring it into the main bottle filled with acid. It even requires you to follow a certain strict diet so that you don’t accidentally get a false positive, which wasn’t hard for me since it was mostly to avoid citrus and tomatoes, neither of which I like.

About a week later I got the call from my Endocrinologist – my results were positive for a very rare but aggressive tumour. Neither of us saw that one coming! She said she didn’t want to go ahead with further testing and scans until we had repeated the 24 hour urine test to be sure. Good lordy, it was even worse the second time because I had to do it at work without anyone noticing.

And so began my week of torture. I had actually planned a little 4 day trip down the coast by myself, just to rest and relax, have some me time. I did still have a great time, but waiting for those results while I was away was agonising! I was surprised by my feelings, I couldn’t figure out what I wanted more. To get a negative result, or a positive… As crazy as that sounds.

I’d already gone through 12 months of being poked and prodded by every kind of specialist, and by then so many doctors had seen my boobs (from ECG’s and Echo’s) that I felt like I could walk down the street topless and not give a shit. I’d had 2 trips to the emergency room, and officially got over my fear of blood tests after having them weekly.

I was beyond ready for answers.

Is that so much to ask? I’d gotten to the point where I didn’t care what that answer was, I just wanted it. Whether it be cancer or a skin eating bacterial infection, just figure it out. But that sane part of my brain still REALLY didn’t want it to be a tumour. A tumour that not only usually gets caught late, but is also hard to find. I was in two minds, and spent an entire week arguing with myself like a loony person.

And then I got that second call from the doctor that I had been waiting for. My test had thankfully come back negative. What did I do differently the second time? I stopped taking my vitamins for the test, just in case. And guess what? Something in one of them was causing a false positive in my results. My doctors exact words “I’m so glad. You really didn’t want to have that kind of tumour!” Phew!

So I was tumour free. How did I feel about that? Equal parts elated, and disappointed. I was back to square one, there was no longer anything this particular specialist could do for me. I was someone else’s problem now. I do have to give her credit though, she was very sorry she couldn’t help me. She said that she hoped I wouldn’t give up, and I thank her for that.

I learnt something that week. I’ve heard so many times “at least it’s not cancer,” yeah that’s definitely a plus. But I’ve had many people with chronic illnesses say to me that some things are worse than cancer… And I agree with them.

Did you know that chemo is used to treat other illnesses as well, such as Lupus? Some people with Lupus have to have chemo for the rest of their lives just to stay alive, there’s never an end or a remission, there’s just pain and sickness every day for the rest of their lives. Yes, cancer is so bad, but I don’t think it’s the worst thing.

Sometimes being sick and not knowing why can be just as scary. I’m terrified of the dark and have been my whole life, I literally still sleep with a night light (don’t judge.) I hate the dark because I hate not being able to see what’s going on, it’s a fear of the unknown. That’s my worst fear. I sometimes wonder if I’d rather battle cancer than go through this not knowing what’s going on.

That being said, I don’t ever wish the feeling of thinking you have cancer, let alone the disease itself, on anyone.

So that’s the story of my very real cancer scare at the age of 28. Let’s face it, in this day and age, it definitely won’t be my last. I just know that next time, I won’t shut people out and deal with it on my own. Sickness can be so isolating, but it doesn’t have to be ❤

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 ❤