Good days & bad days.

This post is for all those out there looking for answers, for those who are confused and for those looking for comfort after getting a diagnosis that brings little comfort.

I have a condition called paroxysmal hemicrania. As well as a fantastic tongue twister, this rare condition is where you get a particularly nasty headache which comes in shots of short pain in one side of your head. Headache seems like an insignificant word when describing the condition, when I’m ill, I usually call them headache attacks because that’s what it feels like. It feels like your brain is being attacked from all sides with very little way of defence.

Let’s go back to the beginning. It’s December 2013, a few days before Christmas. I start noticing a very occasional pain in the right side of my head. It’s not like any headache I’ve had before, it’s short but extremely painful. I take ibuprofen in the hopes of warding it off. I make it through my shifts at work and head home for Christmas without much fuss. I tell my mum of the pain and we both dismiss it as just a particularly painful headache. Come December 27th, I have my first full blown attack. I’m up early, getting ready to head back to Sunderland for my last shift at my Christmas job. I’m in the shower when the pain hits me like a ton of bricks. It was too much and next thing I know I’ve blacked out in the shower. I manage to get out with help from my mum and try and blurt out that the pain’s back. It’s not just going away however. Due to the other symptoms I was showing; stiff neck, severe rash and temperature, I was sent to hospital with a meningitis scare. After a lot of tests including one which meant I got a needle in my spine, meningitis was ruled out. However, a week later I’m still getting these pains. It’s coming in waves, I have real trouble dealing with any kind of light and my heat rashes are coating the entire right side of my face and neck. I go back to the doctors in hope of some sort of relief. The doctor I see is as baffled as those at the hospital but takes a guess. He gives me a new painkiller and tells me if this works, you have paroxysmal hemicrania. The painkillers worked thankfully and that gave us a diagnosis.

I do feel incredibly lucky to have a diagnosis so quickly. Due its rarity, it can take people years to be diagnosed. Looking back now though, I also wish I’d had meningitis. Unfortunately this is no one off.

One of my favourite things to distract myself is coming up with metaphors and similes for the pain. It’s also handy when describing what you have to other people. My current favourites are:

My brain is be grated on either side.

It feels like my head’s being boiled alive.

My brain’s turned into overcooked scrambled egg.

It’s like someone’s punched you in the face and your head’s on fire.

Over the last few years, I’ve had attacks at varying levels of pain and varying lengths of time. Sometimes I’ve just needed to sleep it off for the day with minimal painkillers. Other times I’ve been living in my pyjamas for weeks on end, taking a pharmacy’s worth of pills and barely being able to wash myself without help. Curling up in a ball is a small luxury in these moments. I’ve ended up in hospital waiting rooms leaving every health professional completely baffled when I tell them what I’ve got. Usually you can take comfort in a doctor knowing what they’re talking about, in my case not so much.

In the past, attacks could cause an interruption in my life that lasted a month at most. I was diagnosed with the episodic version of my condition, so I’d have periods of remission. Right now, I’m coming to the realisation that my condition is no longer episodic but chronic. I’m also in the midst of being diagnosed with another condition which is set off by PH, but rather than in my head I get pains in my jaw, neck and ear. I started a new job in April and after two weeks of training I got an attack. This lasted around three weeks but it hasn’t really ended. Since my return I’ve still had bad days where the pain is too much and I can’t physically handle it so all I can do is sleep. I’m having to come to the realisation that there isn’t much I can do but hope my painkillers work for the day and I can make it through my work. Those are the good days and it’s so important to enjoy them.

Today was a good day. Today the pain was manageable. Today I got to bake muffins and see my best friend and write this blog. Even in the midst of a full blown attack I might get a couple of hours where I don’t need feel like screaming in pain. I’ll try and tidy or watch my favourite film which requires concentration.

If you get diagnosed with this condition, I know this blog might be a depressing read but I think the best approach is to keep positive. That’s always going to be easier said than done. With me, I try best to keep a sense of humour. Coming up with silly names for symptoms or making stupid jokes with a brain of putty is sometimes enough to encourage a hint of happiness in a heap of pain. Make sure you have support around you, I don’t know what I’d do without my mum or my friends. I’ve also found chatting to people online with the same condition weirdly comforting, rare conditions can be isolating so it’s good to know you’re not the only one. If you’re looking for someone to talk to, I’m here to answer any questions. This post might be a lot to take it, if anything I just needed to vent. It’s important to have a release, I’m lucky in that I’ve found mine. Anyone out there in this situation, find your release.

Don’t let the pain win and appreciate the good days.

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Tell everyone, lasers are cool.

I haven’t blogged in rather a long time. Considering I want to be a writer, that’s practically disgusting. However, this year has been one of the most hectic and emotional I’ve gone through, blogging hasn’t exactly been my top priority. Now things have settled down so I’m back and hopefully on more of a regular basis too.

I posted late last year about a condition I have called PCOS, and how I’d just started laser hair removal treatment. You can read it here. This is essentially a sequel. As of a few weeks ago I finished my treatment.This is my story of the process I went through, a process that it might actaully be available to you.

One of the symptoms of PCOS is growing dark hairs in places more common on men than women, in my case my neck and back. It’s one of the things that I’ve always struggled with, I never had the patience to wait for my awesome beard which I would obviously rock. Joking aside, as I started to get into make up and building up my own look in my teens, I always had unwanted hair to deal with first. My getting ready routine consisted of hair removal creams and a lot of plucking. Eventually I got fed up.

Laser treatment was something I’d talked about, it was something that would be a possibility in the future if I saved up. One day when I spoke to my doctor I discussed how my recent medication was helping my PCOS, it had made a little difference in hair growth but nothing to rave about, I mentioned about laser treatment, asking what the results of it are like, would it be worth it and she told me she’d find the relevent information for me. A few days later I got a phone call from my doctor with a rather delightful surprise. Through the NHS, women with PCOS can get free laser hair removal treatment. Now if PCOS affects so many women then why aren’t we screaming this information from the rooftops? I was elated. My years of nairing would be a thing of the past.

I was refered to a private clinic for 30 minute appointments every 6 weeks. I had 12 sessions treating my neck and back. For those of you who are afraid due to the expected pain, don’t be! I actually got my first tattoo before I started treatment almost like a warm up and that ended up being more painful. Most of the time you’ll barely feel a thing. Cold air is blown over the skin, giving it a slighly numb sensation. If you do feel something, it’s a nip. I’d take that nip, that physical pain over the emotional pain. I wish I had pictures to show you it’s worth it but you’ll have to take my word.

I can put my hair up without worrying, I can spend my time applying eyeliner and not hair removal cream, I can feel somewhat more confident about my image. To any of you ladies with PCOS out there that know what I’m talking about, I urge you to reach out to your doctors. Your doctor’s an asshole and won’t listen to you? Change to another and get what you know is owed to you. If you want treatment to feel more confident, sexy, beautiful and like the damn woman you know you are, then you are quite welcome to it.

Altogether now, tell everyone that lasers are cool.

A Rant on PCOS.

My end to 2013 and start to 2014 hasn’t been the smoothest. Just after Christmas, I had a bit of a meningitis scare. Spent a day in hospital getting all sorts of tests, I was well and truly poked and prodded. Luckily it wasn’t meningitis, I wouldn’t have been too happy with Santa Claus leaving me that late gift. However, the main symptom which set off my scare, a bizarre headache in the right side of my head, has led to a back and forth between my doctor’s surgery as we try and diagnose my problem. After a week of new medication, we might have found out what it is but alas I’ll have to wait until my next appointment.

Since my mind has been pretty focussed on health just now, I wanted to discuss another condition I happen to have and today seemed appropriate to do so. I was diagnosed with Polycystic ovary syndrome or PCOS years ago. Today it feels appropriate since I got my second laser treatment treating one of my PCOS symptoms.

For those of you who haven’t heard of the condition, which quite frankly wouldn’t surprise me, PCOS is a condition which affects women and how our ovaries work. To put it simply, our hormones can go rather wonky and we can develop cysts in our ovaries. I don’t want to bore you with details, but by just mentioning it I’m getting the word out. Obviously because of some of the symptoms it causes and the area of the body it concerns it’s not the easiest thing to talk about. For example, one of my worst symptoms was dark hair growing where it wasn’t wanted. That’s why today I’ve been having laser hair removal. And why would I share this information with the internet? Because not enough people do!

PCOS affects an estimated 1 in 5 women in the UK but when I’ve spoke about it with friends rarely any of them have ever heard of it. I understand that it’s rather embarrassing but the internet has managed to banish that block elsewhere. We can speak anonymously on blogs and forums and we can speak publicly in the form of video blogs and social networks about all kinds of topics. Yet despite how common PCOS is in a doctor’s surgery, it’s very uncommon online. Now I’m very aware if you search for it, you’ll find what you’re looking for. Google is a wonderful thing, I will not deny that.  The jump that needs to be made though is for it to be spoken about in real life.

I’m a very open person, I pride myself of essentially being an open book. However, when it came to PCOS, I’d get a little bit quieter. If someone asked why I had to go to Edinburgh (I have to go to a specialist there for laser treatment) I’d never specify, just dance around an answer. I’ve now had a few treatments though and quite frankly, I’m feeling happy about it! It is early days but the results are great and I already feel better about myself. When I share something on my facebook, twitter and various other social networks (yes, I’m a bit of an internet addict) I want it to be something that has made me happy.

I’m not saying that we all have to come forward but just be aware of it, this goes for any conditions not just PCOS. Don’t suffer in silence, you’d be surprised how good it feels to let it out. You never know you could help someone figure out what’s going on in their own body or make someone feel like they’re not alone.

More information on PCOS – http://www.nhs.uk/conditions/Polycystic-ovarian-syndrome/Pages/Introduction.aspx