invisible illness

Forgetting your illness

December 10, 2019 — Leave a comment

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.

5 things not to say to someone with mental health problems.

May 15, 2019 — Leave a comment

1) But why are you depressed? What have you got to be depressed about.

Maybe nothing. Why have you got a cold when it’s warm outside? Getting the message? Things that seem trivial to some are huge for others and maybe there’s not a specific reason. Remember it’s a chemical imbalance, an illness like any other.

2) It could be worse, you need to think yourself lucky.

And you Karen, need to shut the fuck up. We know it could be worse. It could always be worse. But honestly, that’s irrelevant and unhelpful.

3) You just need to ______ (insert unsolicited advice here) go to the gym, eat better, go out more, lighten up. Etc etc.

Again, unhelpful and bordering on offensive. A) We may have already tried what you mention or B) We may not feel able or ready to tackle these ‘small’ things yet.

4) Chin up, cheer up, smile…

Suck a dick, eat shit…. see where I’m going with this?

5) At least you haven’t got____ or you’re lucky to have_____

Don’t state the obvious. This is the reason many people feel unable to speak out, in fear of being ridiculed or not taken seriously.

These things may seem obvious, they may seem a bit pedantic but to be frank, they could save someone’s life. In my experience someone who is really suffering mentally needs the opposite of what these words convey. They need a listening ear and empathy, not an I told you, you should… or a chin up! The age old saying sticks and stones may break my bones but words will never hurt me, doesn’t apply to people with depression. All it takes is a little bit of rephrasing on your part. Nobody expects you to walk on egg shells but try to put yourself in that persons shoes and ask yourself if you would find the above 5 things helpful to hear in your time of need. If the answer’s no, stop saying them!

Living my best life with fibromyalgia.

March 10, 2019 — Leave a comment

Cough, I know you’re thinking Jesus, Steph has finally decided to get out of her funk and help herself.

Not really, I don’t know, maybe I’ve just been lucky. Since I left my job my health has improved tenfold. I believe this to be because I have more time to rest when I need to, but it could be due to a lot of factors, or it could just be good old coincidence.

Mentally, I am stronger than I have been for some time. I’m off of antidepressants for the first time in years, and I’m not feeling constant impending doom. This is a really big deal for me, and I’m feeling positive about the next chapter.

But it’s not all cupcakes and rainbows (yes that was a Trolls quote) Pain has got a lot to do with mood, low mood can exacerbate pain. Especially when suffering with a condition that effects your central nervous system, as that’s when it’s on high alert. Psychological pain can bring on physiological symptoms. I’m not a doctor, but I have spent a lot of time researching my condition. I’m not going to sit here and spout that positivity cures illnesses as that’s untrue and offensive, but when you feel happy it makes pain more manageable. That much I do know.

Today I woke up earlier than usual due to Ciara’s new found love for 6am. I felt terrible, my body was heavy and I can feel pain deep inside each joint. This is not imaginary, this is real pain, and I’ve had to take some heavy duty painkillers to combat it today. Despite being in very real pain today, I feel good. Good, because I’ve had a decent run of late, without this kind of debilitating pain. I’ve had pain, but the kind of pain I’m in today, is what reminds me I have a disability. In short, it sucks.

However moving on to the positive bits again. I’ve been doing little things that make me feel better. Small things like, having a tidy living space, getting enough sleep (when I can and Shaun’s snoring allows) but generally doing things that make me feel good. Avoiding toxic people, not analysing every little thing, not comparing myself to everyone, and trying to accept my pain without beating myself up. All these little things help. They aren’t a cure but they do make a difference. I went through such a battle with myself to accept this illness without it breaking me. To allow myself time since my formal diagnosis to grieve for the old me. I’ve spent two years grieving, and I still suffer! I won’t play it down, but I’m in a place now where I can accept it without it breaking me. I can move forward and still live a good life. I can have bad days but they aren’t all bad. Some of them are fucking brilliant!! You too can have good days again. It’s not going to be easy, but even without an illness or disability life isn’t easy.

But I have all my faith in you. You can do this, you can live your best life too. 💕