A love letter to Gossip Girl (and a moan about chronic pain)

Today is the fourth bad cerebral palsy day I’ve had in a row. I am sore, I am grumpy and I am tired. And, I’ll admit it, I’d kinda forgotten just how draining it is to have increased pain levels over ‘prolonged’ period of time.

And.

It.

Sucks.

I’ve had far more than four bad CP days in a row before, so this technically isn’t anything new. I should be a pro at dealing with this now. I’m 29 and I’ve had my impairment all my life after all. I’ve learned many, many life-hacks to make day to day living easier over the years, and I’ve learned ways of managing my pain to keep it a low-level as possible. But I’ve learned something else too: sometimes my pain is going to spiral and there’s nothing I can do about it. I just have to ride the wave and get through it as best I can.

A few years ago it felt all my posts on this blog were about stints of intense days that I couldn’t seem to get a grip on. They were so mentally and physically draining that I spent most of them crashed out on the sofa watching endless episodes of Gossip Girl because that seemed to be the only thing I could concentrate on.

I woke up expecting every day to be the same, if not worse, than the last one and I went to bed expecting the act of trying to get to sleep to be a nightmare in itself. At the risk of sounding like I’m in a work meeting (sorry to any of my colleagues reading this) I found a sort of battle rhythm and got through it as best I could.

The thing is, when you’re not in the cycle, that rhythm, that never-ending fog of only ever being half-present because all you can think is ‘this hurts, this hurts, this hurts’, you forget what it’s like. You forget what all your distraction techniques are to take your mind off it, your forget what that one sitting position that gave you five minutes of comfort was, and you sometimes even forget how low it can make you feel.

Every time you (or at least I) swear that you won’t forget this time. How could you possibly forget feeling like this, anyway? How can you possibly remember anything else from that time period other than wanting it to end? But you (or at least I) do. I forget every time, and I always forget just how quickly I forget too. Within a matter of days the relief that it seems to all be over for now wears off and you put the memories to the back of your mind and deal with all the things that the pain put on hold.

You forget because you have to, because you’re desperate too, and because it’s just so amazing to finally be able to thing about something – anything – else again.

Then, when the next wave comes I (and maybe you, too) feel a little bit guilty that I let myself forget so easily. I forget the crappy bits and just choose to remember that I enjoyed watching 42,000 hours of Gossip Girl far more than I would care to admit. And yes, sometimes I even think about how grateful I am that the show exists to keep me company on days like that. I’m genuinely not sure how I would have got through that rough patch a few years ago without it.

And so today, on bad cerebral palsy day number four, I had a hot shower, put on my uncomfortable-but-useful orthopaedic shorts, and watched Gossip Girl, Because even through all the pain, sleep deprivation and the massive mental health crash that came with it, I’ve somehow managed to remember that Gossip Girl is what got me through.

Let’s hope it does again

I jinxed it…

Do you remember that bit in my previous blog post where I said that my hip and pelvis pain had been so much better since I’d been staying at home all the time?

Well, I think I jinxed it, because guess who started having a pain flare the day after I wrote it?

Yup, that’d be me.

My pelvis pain is back and making itself felt and I am most displeased.

It’s not the worst flare I’ve had in fairness but it’s caught me on the back foot, that’s for sure. I’ve spent the last couple of days trying to figure out if I’ve done anything differently that may have triggered it; something I could just stop doing and have it settle back down again. Unfortunately, the only thing that’s been different is the weather, which has gone from being wonderfully warm to flippin’ freezing.

My cerebral palsy and the pain it causes is so much easier for me to manage in the summer. Heat is one of the key ways, if not the key way that I manage my impairment on a day-to-to basis and to have the sun disappear so quickly makes my body very cranky indeed.

So, reluctantly, I have dragged my orthopaedic shorts back out of my wardrobe which will likely help if I wear them for a couple of hours every day while it’s cold. They’re custom made for me and are measured to the millimetre. They’re designed to be skin-tight and hold my hips and pelvis in the right place.

I like them and they do help, but getting them on is a total nightmare. Have you seen that bit of stand up Michael McIntyre does about watching someone put tights on? It’s like that only it takes about three times longer and doesn’t even have the slightly sexy bit at the beginning.

All in all, I shouldn’t complain, but it’s made me realise just little I’ve had to focus on managing my pain levels the last couple of weeks. Of course, it was wonderful while it lasted, but it’s hard not to feel a little bit sad when the pain becomes front and centre again.

Employable Me is airing in the Netherlands

This morning I woke up to a comment on one of my YouTube videos informing me that Employable Me is currently showing on TV in the Netherlands! Then, when I got home from work, I saw that people had e-mail this blog’s e-mail address to send their good wishes too.

If you’re here from the Netherland, Hallo and  dank je for taking the time to reach out to me. (I don’t speak dutch, so I’m going to trust that Google Translate is accurate. Sorry if I actually just offended you!)

It’s all a bit surreal. I always knew there was a possibility that something like this could happen, I just really didn’t think it would. Or I didn’t think anyone would be interested enough to track me down online to tell me, although I’m very glad you did.

This is what Employable Me is all about; spreading  the message as far as possible that disabled people can, and do, have jobs. It doesn’t matter where in the world you are, with the right support, it will be possible.

Thank you for taking the time to watch the show and allowing me to share my journey with you.

Love, Nic (and my blue walking frame, called Ivy)

xx

4 years on antidepressants

The other day while I was in the shower it hit me: February marked four years since I started taking antidepressants, and as well as wondering where the time had gone, I realised I wasn’t sure how I feel about this. I’m still not.

Before I go any further with this post, I want to make it clear that right from the first couple of weeks of taking my meds I knew I’d done the right thing. It’s actually the best thing I’ve ever done. I have no regrets.

But I still remember how I felt in my doctors appointment that day. I’d been offered meds before in the past and refused them, but this time I knew I’d do anything they suggested. At the time, my anxiety was more of an issue than depression, and, as dramatic as I know this sounds, I was genuinely scared by how bad things had become.

I couldn’t relax, couldn’t sit still, and my germ anxiety was so bad I changed my clothes every time went into the bathroom, even it is was just to scrub my face. I washed my hands before, during and after using the toilet.   I laugh about this last part now when I bring it up to show people how far I’ve come, but honestly, I don’t find it funny in the slightest. I find it terrifying.

Then the doctor told me that he’d like me to be on them ‘until I’m feeling a bit brighter, plus another six months’.

I felt like the bottom had just fallen out of my world. I wanted to take it back. I wanted to take it all back, even the CBT I’d agreed to try instead of counselling like I’d had several times before (I’ve actually had CBT since then too). I’d agreed to give over at least half a year of my life to taking these meds. That was way too long! I’d made a huge mistake! I couldn’t take it back because the prescription was already in my hand.

I got home and paced my room as I listened to Twenty One Pilots in my earphones as loudly as the volume would let. This, as trivial as it sounds,  is actually quite significant and proves how angry I was with myself. When someone bought me my very first tape walkman as a kid, I hardly used it because I was so afraid it would make me go deaf, and on the rare occasions I did use it, I would spend at least 10 minutes after I’d taken the headphones off repeating everything my parents said back to them so they (and I )  could check I hadn’t gone deaf. I had to do this for quite a while to prove that my ears were’t playing tricks on me for the first few sentences…

I’m over this particular worry now, but it’s always in the back of my mind whenever I use my earphones.

Anyway…

Fast-forward to 2018 and I’m taking antidepressants way, way, way more for depression than anxiety and I feel strangely okay about it. I’ve had so many ‘dips’ in this time that I know I’m not ready come off them yet. They’ve not been a magical cure, I’ve had to switch tablets once and raise my doseage more than once, but most of the time they keep me level enough that I can drag myself out of bed, even on my ‘bad’ days, and can actually distinguish one thought from another rather than being sucked into a rabbit hole of thoughts and worries.

I feel like I’ve hit rock bottom at least three times in the last four years, but I’ve found my way back every time. When all is said and done, that’s what’s important.

 

 

 

 

 

 

I have a job!

There’s no denying that lots of exciting things have happened to me lately, but perhaps the most exciting thing of all is that I can finally say I have a job!

A full-time, paid job involving writing and social media and research and newswriting and all the things I love. It’s mine until July.

20170509_141553
Photo shows a mug with a finger pointing and the text ‘you’re hired’.

Nancy Doyle, the career psychologist from Employable Me, accidentally made me a cup of tea in this mug while we were filming the series. I took a picture because it made me laugh at the time, but I guess I have a legitimate reason to use it now!

I start tomorrow (Monday).

I am so relieved.

I have lots of amazing and exciting freelance projects on the go too. I’m still going to keep working on those during my evenings and weekends.

I’ve gone from being the least busy person ever to finally being able to justify buying a diary again, hence my almost crying in Waterstones incident the other day.

I’ve actually been volunteering a my workplace (ohmygosh I have a workplace) for a couple of months, so I already know the people and that the building is accessible, so I’m not as nervous as about my first day as I could be, but the nerves are still there.

I’ll keep you posted!

Nic xx