Just another chronic illness blog

When I got diagnosed with a chronic illness I didn’t get the same quota that you get when you’re told you have pneumonia or you break your leg. I didn’t get ‘get well soon’ cards or flowers – which I guess is a good thing as get well soon doesn’t really exist in the chronically ill community. But we still appreciate the sentiments.

I don’t get much love for my illness, I get eye rolls and people annoyed at me talking about it again, but I don’t get much love.

I get people accusing me of using it as an excuse and comparing me to people with the same problems. But not love.

I get disbelieving shakes of the head and funny looks when pulling into a disabled parking space, but not love.

I get people telling me to be positive and exercise more but I don’t get presents or hugs.

Imagine waking up one day and not being able to get out of bed, yesterday you could of ran for the bus, but today you can’t move. Now imagine feeling too ashamed to talk about it for fear of being dismissed, accused of faking, or mocked. Because that’s what living with chronic illness is. That’s what happens when people can’t see your pain. They assume it doesn’t exist or that you’re making it out to be much worse than it is.

Even your friends think you’re exaggerating, and even your family get fed up when it encroaches on plans with them yet again. When I tell people I have to pace myself or I’m not feeling too good, I literally brace myself for their reaction. Nobody ever says, it must be so hard, I admire your strength.

That’s why I write it down, and that’s why I share it on the internet with people whom I’ve never met. Because some of those people get it and they aren’t (at least not visibly) rolling their eyes at yet another post. People are happy to offer you their support for the occasional bout of misfortune, but when its ongoing nobody wants to get dragged down with it. I get it! I really do, I’m a realist, I know it’s hard for people to understand, and it can be miserable to hear about, but imagine living with it.

Imagine just for a minute that it’s you who’s sick all the time. Then imagine feeling like nobody cares. Feeling like you’re burdening people whenever you talk about it, feeling guilty for being sick, imagine how lonely that gets.

Everyone has their own battles and some people have it much worse than you or I, that’s a fact. Some people have the same illness on a different level and some people have diseases that are killing them.

What living with a chronic illness has taught me is not to make assumptions on people’s lives, to believe people when they tell you they’re suffering, and to remember to check in on your friends. Pain changes people, in different ways, sometimes it’s empowering and when you’re on top of it you feel like you’re winning, other times it’s dark and makes you wonder what’s the point of living at all if this is how you’re destined to feel everyday. It’s overwhelming and hard to explain – but by sharing my experiences with it I’m remaining sane. I’m not hiding and so that is the reason behind yet another chronic illness post. If you know, you know. 💜

View this post published on The Mighty here.

https://themighty.com/2020/01/when-people-cant-see-your-chronic-illness/?utm_source=engagement_bar&utm_medium=link&utm_campaign=story_page.engagement_bar/

Forgetting your illness

Things are good, you’ve had low impacting symptoms for a while and you’re starting to remember your pre-diagnosis life. Surviving quite happily on a steady dose of painkillers and enjoying the festive fun.

Not so fast pal!

Cue a poorly child you’re responsible for nursing back to good health, a weather change, or maybe an allergic reaction to some costume jewellery. Could it maybe you’ve done a little more walking than you usually do, or a long drive? – and bang!

Hey chronic illness, long time no see.

Now there’s no need to pretend like all the above things haven’t been thoroughly enjoyable, because if it wasn’t for those things you would have been sure to shrivel up and die of sadness, but when a flare up occurs it can be completely life limiting, and that’s why it’s called an invisible illness, because you don’t see it coming.

It’s December and Christmas cheer is everywhere. You’re getting right into the spirit of it and so you should, but then you catch that cold your daughter came home from preschool last week with, and it’s downhill from here.

I wanted to write a bit about how it feels to have a ‘just a cold‘ whilst fighting a chronic illness and what catching viruses does to our already weakened immune system.

Of course at first it starts like any other common cold and you get a sniffle or a bit of a sore throat. Then the pain from your congested sinuses trigger a migraine and the onslaught of nausea that follows makes you feel weak and shaky – for days!

Once that’s passed, the aching from the flu like symptoms, makes your already weary joints feel like they’ve been battered with a hammer, every single bone in your body feels bruised and your skin is sore to the touch. The raging temperature you’ve acquired messes with your already shot internal thermostat, and you constantly flit between grabbing extra layers and peeling sweat covered ones from your limbs. After you’ve done that a few times the fatigue completely floors you, and you have to close your eyes. Which is a bit of a problem when you’re sat at your desk or the school run needs doing.

What is just a sniffle to the average Joe can disable someone with an already weakened immune system and if you see them feeling a bit sorry for themselves try and refrain from telling them to man up. You can’t see the fight they’re fighting but underneath the snot their body feels like they’re in the ring with Ali. Don’t make an assumption that because people look well means they aren’t battling, they may well be trying harder to conceal it.

It’s so important to pace yourself when you suffer from a chronic condition but it’s also really difficult when you’re feeling well to remember to do this, and not get down about missing out on fun stuff. Suffice to say I didn’t pace myself all too well this time around and now I’m paying for it.

I’ve tried really hard to fight through the tougher days lately too, and I’ve done so with not much back lash, however the start of this flare up is swiftly reminding me that actually I need to slow down. So this is my reminder to you, be kinder to yourself and anyone you know who has an invisible illness – the winter struggle is real for us all, but it’s even harder for them.

No cure

Yesterday I had my first sick day in my new job. I’ve been there under 3 months. And until now, so far so good, been taking breaks on my days off, getting enough rest whilst still having a life, looking after myself, taking my medication. Then yesterday I woke at 3am feeling nauseous and it wouldn’t go away. It was bad I couldn’t sleep. I text my supervisor in the morning to say I wouldn’t be in and spent the rest of the day in bed with a full blown migraine. You know the ones where even your phone is too bright and your guts feel like they’re falling out of your asshole?

I’m home today too, the headache has subsided but the sickness is still there, I still feel weak and unwell and generally crap about myself.

You see the thing is, back in July I had a daith piercing and I was convinced it would cure my migraines. So to learn it hasn’t has really fucked me off. I also feel shit about being home. There’s no cure for migraine, just like there’s no cure for Fibromyalgia or PMDD and I have those too, but I feel terribly guilty about it. Because I’m not a skiver, I’m not a lazy bitch (unless I have a hangover) and I genuinely feel awful when I let people down.

When I first got diagnosed it was a relief, I had loads of text messages and social media likes, telling me how relieved I must be to know I’m not going mad. I was!

I had loads of sympathy messages too, but they have a shelf life. And when you have something that can’t be cured people get bored. They don’t understand why you’re still going on about being ill all the time. Everyone knows, you don’t need to keep banging on about it.

But I do need to. I need to because that’s the only way aside from the world all contracting the same illness, that people understand. It’s the only way to spread awareness and helpful tips. It’s the way I feel most comfortable explaining it and so that is why I ‘make such a big deal out of it‘ it’s not for the sympathy as let’s be honest that shit dried up years ago. It’s not because I’m craving those text messages that don’t often come anymore, it’s because they are diseases that nobody ‘gets’ nobody really believes.

You said you have a migraine but really it’s just a headache, here, take some asprin”

“So and so has fibro and she doesn’t go on about it all the time, she still works, she doesn’t even take medication”

“Yeah I believe she has it, but she definitely plays on it”

“It’s just a period every woman has them, stop moaning”

If you suffered migraine you would know an asprin is about as useful as a cock flavoured lollipop, once an attack has started. If you had fibromyalgia you would know it differs in intensity depending on a whole world of factors, even down to the weather! And if you had PMDD you would know that before your period comes there’s a good chance you may have considered the fact you’ve lost your fucking mind and begged your doctor to section you only to feel ‘normal’ again when aunty Flo pops in. If your mum had it and couldn’t work, or your sister, or your best friend would you say that about them too?

Anyway – the point of this post was more for me than you, the reader. It was more about assuaging my own guilt, because guilt is an emotion that the chronically ill can’t escape. I feel guilty that Shaun had to cook his own dinner after he’d been at work all day yesterday. I feel guilty that Ciara had yet another sleep over at nanny’s because I knew I wouldn’t be able to get up and see her off to school this morning because the medication I took last night meant it probably wouldn’t of been safe for me to drive, that’s if I even heard my alarm. I feel guilty for looking at my phone when I should be resting. I feel guilty for having a life on all of the other days because if I didn’t I might not feel this shit today. Guilty Schmuilty. It’s shit. It doesn’t matter how many well wishes people send, how many ‘you can’t help being sick’s’ I hear, I still feel guilty. I know I will always feel guilty until I get to a stage where maybe one day there is a cure, or maybe there’s something I haven’t tried that will help me manage better. I feel guilty for letting my family down on days when I’m bed bound. I feel guilty for letting my lovely new colleagues down on days I can’t work. I feel guilty for saying when I feel ill. I feel guilty for cancelling a night out or a meet up. But most of all I feel guilty when I make assumptions about other people’s lives. So if I’ve learned anything from having a number of long term illnesses, it’s never to assume. You really don’t have the number of someone until you walk a mile in their shoes. The likelihood is there’s people out there with worse problems than you and me. Kindness should always be your go to option.

Before I got sick

I wanted to write a post that refers to my fibro. I haven’t written much about it in a while and it’s still there, all the time.

These last few weeks, well over a month actually, have been a rollercoaster of lows and lower lows. Mentally and physically, no more so one, than the other. and not just my own.

The highs have been seeing my beautiful little girl loving the Christmas spirit and bringing our family closer together at a time when we’ve all been pulling away and retreating into our own dark caves.

Two years ago when I was ‘officially’ diagnosed with Fibromyalgia I had a few friends that were supportive.

I also had a few friends that I don’t feel 100% believed me and in all honesty maybe they still don’t. But about a month after diagnosis almost all of those friends forgot that this was something that was staying around for the duration. I felt as if they were waiting for an ‘end’ that didn’t come, a ‘recovery’ that never happened. I have a few really close friends that want to understand, that make the effort to learn about my condition in order to be able to empathise and spot the signs of a decline, and when I say few I mean like 2 or 3.

I also have some friends that don’t do that. Never ask me how its been or instigate a conversation around my illness. This used to piss me off. Mainly because it is such a big part of my life that I want, no, let me rephrase that I NEED to talk about it. I need support to manage it. I NEED to feel believed, because it’s real.

That being said, I get less pissed off these days because I’m logical, and I know that not everyone is as open as me. I know that people are fighting their own, battles and I may know nothing about them because unlike me they’re not talking about them or posting about them for everyone to read.

So how can I judge someone for not supporting me when they themselves may need support but I don’t know I should be providing it?

I’ve always been a ‘needy’ person, I need reassurance in all of my relationships (don’t ask why or we could be here a while) but in friendship I also seem to be the instigator as well.

The one that makes all the moves. Like if I didn’t arrange to see people I’m not sure I’d see anyone. Again, this used to really hurt my feelings.

I always feel/felt like after I got ‘sick’ people assumed I was a write off and in a lot of ways I did have to leave behind a different life.

But again, does it really matter if I make the first move? I mean, it’s not a competition is it?

Let’s imagine my worst nightmare being that it’s because people actually don’t want to see me, do I need those people in my life, or want them in it? They are two very different scenarios.

Before, I would of gone to the ends of the earth to try and make someone like me, to justify my behaviour and things I did and said, to change if I thought it would change people’s perception of me. Then when the didn’t I’d feel angry and bitter and go in the opposite direction.

Now that I accept myself for who I am I don’t feel the need to justify myself or beg people to be in my life.

That doesn’t mean I’m 100% happy it just means I’m ok with who I am. I’ve accepted her and I trust her.

In light of circumstances recently, I’ve been a lot less instigatory. And that’s because I too have been busy and preoccupied.

So again, I go back to earlier where I say ‘you never really know everything’ Some people are just busy dealing with their own shit show, they’re not mean, or ignorant’

And it’s ok! It’s not a crime to be busy, and it’s also not a crime to put yourself first. I bang on about self care, enough! So maybe that’s what people are doing when they’re not checking in or you haven’t heard from them in a while.

I’ve made some new friends over the last few years too, good ones. Ones I trust and talk to regularly.

Ive developed strong and I hope, lasting relationships with some of my colleagues too.

I’ve also got friends that love my kid as much as I do, and friends that don’t get involved as much with family life but are still there for me if I need them.

Anyway going back to the fibro, the point I was initially trying to make, before I started tapping away is that, I always highlight the bad days, because they’re bad and they’re prominent and intrusive in my life. But what about the good days. What about when I feel ok. Or better? I don’t shout them from the rooftops do I?

No, I just let them pass wishing they were more often, instead of enjoying them more. The thing is with chronic illness is, it does change your life. It does dull the good times and leave you wondering what’s next, they are less for sure, but they aren’t never!

Your life starts getting separated to ‘before I got sick.’ and now.

But If I’ve learned anything in the last month it’s this:

Your life really can change overnight.

You can go from being one person, to another in a matter of hours.

You could get hit by a bus and be left paralysed or hit your head on a kerb, and be left with lasting damage that means you aren’t able to do the things you were the day before. Have a stroke, lose a limb, you get the picture.

People won’t understand because it didn’t happen to them. They’ll remind you about how much worse it could of been, and you’ll be expected to be grateful it in fact isn’t worse.

They’ll rally round you when it first happens then when you aren’t recovered in a week, the offers of visits start to dry up. It’s hurtful at first, but it’s just a new phase of your life.

A bit like having a baby, the toughest job in the world, the one that everyone does differently and nobody seems to understand. It shows who’s with you for a long time and not just a good time. Be grateful for those people, tell them how much you appreciate their support and start grabbing the good days by the short and curlies, because this life we have, cliché as it sounds, it’s not a dress rehearsal.

Illness. Injury. Bereavement. There’s absolutely no doubt it changes us, but that doesn’t mean it can’t be for the better.