We often hear about the symptoms of chronic illness and chronic pain. Muscle fatigue, muscle pain, joint pain, headaches, nausea, stomach & bowel disturbances, skin issues, chest pain, fatigue, malaise, and many many more.
But what’s often not mentioned is the emotional toll any chronic illness takes on every person who suffers. In particular, the guilt that comes with it.
It seems strange to say – I mean, why would you feel guilty for something you had no say in? But it’s an unfortunate and common side effect of chronic illness or pain.
No one actually wants to be a burden. No one wants to hold other people back. So we do exactly what we shouldn’t do – we spend all day apologising to others for our illnesses and our limitations. For the reason we can’t work full time, or work at all. For the reason we need extra rest. For the reason we can’t do too many physical activities. For the reason we can’t get out of bed that day. Our illness, that we can’t help or control, makes us feel invalid and like we’ve lost all value – and ultimately makes us feel guilty.
Did we do something to deserve this? Could we have taken better care of our bodies before this happened? Is there something more we could be doing to feel better – to be better? Should we listen to all that unsolicited advice, spending every extra penny we have on controversial treatments and natural methods that may or may not work?
What’s the right answer for this predicament we didn’t see coming, the ‘sure thing’ cure we haven’t tried yet. I swear, if you just tell me what it is, I will do it!
But that desperation for an answer to ‘fix’ our bodies does nothing to ease our mind of the guilt, or the fear that maybe it really is all in our heads. We still feel bad every single time we have to cancel any social plans. We still feel bad when friends just start forgetting to invite you, because you rarely show up anyway. We still feel bad when we’re on date night and have to leave early when our bodies start to fail us, or planning a 5pm early bird dinner just so you can be in bed by 8pm. We still feel bad about all the limitations that come with any outing. We still feel bad making plans at all, knowing we may have to cancel. We still feel bad for all the extra responsibilities other people have to take on at work in our absence.
Our limitations, become their limitations.
I still feel bad when my close friends and family, or my boyfriend, says “it’s okay,” when I cancel or pull out of plans. And they mean it. It really is okay, they understand my reasons, they sympathise. So why does that just make me feel worse? More guilty. Like maybe I’m taking advantage of their love for me. Like I’m hurting these people that care for me so much that they have unlimited patience when it comes to my struggle for my health. I’ve just wasted their time and ruined their plans for the day, but somehow it’s okay. But it’s not okay… Not to me. Never to me.
Guilt. All consuming, occasionally debilitating, and most of all, unexplainable… And the symptom we often don’t talk about. But it’s there, devouring us from the inside and causing more conflict in our minds than we care to admit. Do we put our health first, or do we just push through that activity that we know will just cause us more harm afterwards? Am I being selfish for choosing rest when I need it?
I can answer that, confidently and surely…. No, you are not being selfish for looking after your health. I know that, yet I still question it daily. Maybe it’s time to stop apologising for something that we cannot help, that we did not ask for, and that we are doing everything and giving everything to try to fix. Maybe over time, that guilt will be a light shadow in the background of our minds, rather than consuming it. But most of all, the moment we stop apologising, is the moment we show others that we don’t care what they think. That we know we didn’t ask for this or want it, and that we will not continue to say sorry simply for being sick.
What is a New Year’s resolution? Is it a goal to eat healthier, keep the house cleaner, spend more time with family?
Oxford Dictionary defines New Year’s resolutions as “a firm decision made on New Year’s Eve or New Year’s Day to do or refrain from doing something over the course of the coming year.”
But I think it’s more than that. It may sound cheesy, but I’ve never made a new years resolution unless it’s really going to mean something, possibly even change my life or give me an amazing experience I would have missed out on otherwise.
For the first time in years, I’ve made a resolution for 2020. My blog, my readers, and my friends & family have inspired me to write a book – a memoir of sorts. Something to raise awareness for something I’ve always believed is worth fighting for… Mental health.
The new year doesn’t mean anything to a lot of people, maybe just a chance to party. But for some, it’s a chance for change. A chance to start over. A chance to either put a crappy year behind them, or celebrate the amazing accomplishments from that year.
My health struggled to the point where I had to resign from a job and company I love this year. That wasn’t so good. But I still feel the need to celebrate this year. For the chance for change and growth. If I still worked in that job, I probably wouldn’t have the goal to write a book next year. I probably wouldn’t have found my passion for writing and sharing peices of myself in the hopes of helping others. I found my true passion this year, and I found hope and strength. To me, that is most definately worth celebrating.
So what did 2019 bring you? Even if it felt like a horrible year, think about the positives, think about what you gained, and spend your New Year’s eve putting the bad behind you, to wake up fresh and ready for change on New Year’s day.
Maybe it’s just like any other day. But you can choose to let it be a symbol, to be a trigger for change.
I have a goal that I’m going to make happen in 2020 – what about you?
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. ❤
“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
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
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.
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.
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 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.
“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.
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.
Brain fog is a fickle and complicated symptom of many diseases. I don’t have dementia, so why can’t I remember why I entered this room? I’m 29 years old, why can’t I remember that person’s name?
Now, let’s be real, those things have happened to all of us. But imagine being in a Pilates class, and not actually FEELING like you’re in a Pilates class. Trippy, right? Let me tell you from experience, NOT a fun feeling.
Brain fog can mimic some mental disorders including Depression, ADHD, or Dissociation. It’s like being trapped, trying to grasp at something that should be so easy but just falling short.
This week has been a bad one for me. A three day migraine, constant chest discomfort, UNBEARABLE sleepiness, generally just feeling like aids (sorry for my lack of descriptive abilities at the moment,) and the real fear that these feelings may not pass. But the worst part of all, I’ve had several people ask me “what do you mean?” when I’m trying to have a conversation with them. It’s not their fault, I simply can’t focus enough to explain anything properly because I’m suffering from brain fog along with my other symptoms. Luckily for all of us, as I write this, I’m the most lucid I’ve been in days. Hallelujah! (…I should probably hire an editor.)
I’m definitely not used to people being confused by what I’m trying to say to them so many times within a few days. I make sense to my own addled brain, and I just can’t grasp another way to explain what I’m trying to say. Sound frustrating? That’s because IT IS! The worst part is, I can’t explain to anyone what I’m feeling without sounding looney, so I just go about my day looking and sounding completely spaced out and incompetent.
Brain fog is scary as hell. I want to be able to go through my normal every day life without forgetting what I’m doing. I don’t want to feel embarrassed when I can’t remember someone’s name, someone who I’ve known for 3 years. I don’t want to be constantly reminded that “you’ve already told me that, a few times”. I don’t want to be in Pilates having to mentally push myself like I’m Michelle Bridges from The Biggest Loser, just to get into position for a simple stretch! All because I’m suffering temporary migraine induced dissociation.
I don’t want to feel like I’m sleep walking through my life. Bad health has taken over my body, does it have to take over my mind too? Big events, special memories, they could all pass by in a literal blur, and there’s nothing I’d be able to do about it. I don’t get to choose when a flare up happens, or when that flare up will affect my cognitive function.
You know what? I hate that. I’m positive on most days despite my health battles, but today I get to hate it. Today I choose not to fight it, but to go home and rest. And that’s totally okay, because even superheroes need rest! 🤷♀️ 🦸♀️