My stupid head

I’ve been umm-ing and ahh-ing for months about whether to write about this post or not. It’s not something I talk about a lot and although I’ve referred to my health issues before I’ve never addressed them fully on this blog, and talked specifically about it & the challenges it brings.

I have a bit of a broken brain. Since I was a teenager I have suffered with a lot of bad headaches and migraines.

Eventually, during my university years, as things worsened, I got some diagnoses. The first to be diagnosed properly was the one with the most severe pain; Cluster Headache. Otherwise known as Suicide Headache due to the number of chronic sufferers who have killed themselves to escape the pain, they are the worst thing I’ve ever experienced. Definitely worse than childbirth, and I usually hurt myself during them to attempt to distract myself from the pain in my skull. Thankfully mine are episodic and I’m in remission for most of the year.

By the time James & I got married in 2008, I had been handed two further diagnoses, and was on daily medication to try and keep them under control. Chronic Tension Headache & Chronic Migraine. That’s at least 8 migraines a month, and over 15 headache days a month – although in my case it’s easier to count the days I don’t have any pain, which is close to zero most months. I have two types of abortive medication for my migraines and cluster headaches, and don’t tend to take anything for my every day pain level. I’m not a big fan of the various medications I’ve been prescribed over the years; so many of them are addictive, the side effects are crap, and the more you take of anything the less effective it gets.

The drugs I’m on right now aren’t particularly strong, for my daily headaches & migraines. I was given a reprieve during my pregnancies from the pain, which was fantastic, but since Lydia stopped breastfeeding they have been getting gradually worse and I’m back at the levels I was before the kids.

I’m back on the daily preventative medication I was on before getting pregnant with Georgie, but I don’t like taking really strong abortive drugs that make me too sleepy or “out of it” to parent safely. So, it’s a balancing act where the aim is being able to manage the children responsibly, and all these other things… the pain level, nausea, light & noise sensitivity, dizziness & ability to think straight. So I can’t go on painkillers that knock me out for hours anymore, as I don’t have alternative childcare when I’m ill, really. I have to just take enough to dull the symptoms to a just about manageable level, so I can watch the girls as long as I need to.

Lydia watching Umizoomi
Thankfully, Lydia loves to chill out with Mummy – headphones on while she watches & plays on a tablet!

It’s not unusual for me to retreat upstairs to bed when James comes home. I hate that those few hours of precious family time are ruined by my stupid head.

I don’t want this to be a big whingey post, I just want to open up a bit about this stuff. I’ve been playing it down for over a decade and I’m just so damn tired. The last few months have been so full of pain and stress and pills and I’m just so damn tired. Each migraine is draining, and keeping up with all my obligations is stressful and exhausting. And I’m flaky. I hate that I’m flaky.

My to-do list for the next month or so include a daith piercing because it just might help and I am willing to grasp at straws, and yet another trip back to the doctors where I will probably cry and beg for a better solution. He won’t refer me to a specialist before going through all the motions of trying to manage it, because he is ignoring my decade plus of medical history on his computer screen and treating me from scratch, and ignoring half the things I say.

Over the last four weeks I have had around two or three migraines a week, and been in some level of pain almost 100% of the time. I’ve vomited a fair bit, and my stomach has been unhappy a lot of the time because of my pain meds. I’m having trouble sleeping, having trouble working, and to be completely honest I’m having trouble walking without holding onto something solid a fair bit of the time. The world is too bright, too noisy, keeps spinning around, and my guilt level is skyrocketing because my daughters are missing out on having a proper Mum.

Also, the state of our house is ridiculous and that is stressing me out, too. I wish we could afford a cleaning service!

The thing about me is, unless you’re James, a lot of the time you won’t be able to tell what state I’m in. He can read me like a book now, and sees every wince, each sway, and can see how tense I am like no one else can. I think a lot of people with chronic pain conditions master the ability to hide it. You learn ways to ignore it as best you can; I will quite often finish something and then the pain hits me like a wave because I’ve been mentally pushing it to the back of my mind while distracting myself somehow. And then I get very ill, very fast. My migraines can be awful and the hangover can last for a few days.

A big part of why I don’t plan to go back to work full time in an office when both kids are in school is because I just don’t think I can. When I got pregnant with Georgie I was nearing the end of a long drawn out battle with work over my illness. That I was technically disabled was established by my doctor during the process. They were trying to sack me over less than 13 days absence over a year. It was nasty, and stressful, and I think it was a big contributor to why it took well over a year to fall pregnant.

During that year of bullying regarding my condition, I learnt to hide things a lot more, and just had to cope with things as best I could – being called a burden isn’t fun. I think that’s had a big effect on how I am now… I feel a lot of guilt about the way I am, and even though there is nothing I can do to just turn them off I feel like it’s all my fault somehow. Being self employed, working from home, when I can, is a lot more freeing and works much better around my health issues.

The parental guilt, in particular, is crushing. Every time the girls have to miss out on something because I am incapable of doing it with them I feel awful. I do push myself to do stuff when I’m hurting with them, attend events and so on even when I’m poorly, but I suffer afterwards! Georgie is wonderful, if she thinks I’m not well when she gets home from school she will get her own snack, and fix one for her sister at the same time – or she will ask me if it’s ok to turn the light on outside my bedroom when I’m lying down. She’s five years old, and so caring and considerate at times it hurts – because she shouldn’t have to do any of those things. She should get to be a carefree kid.

Anyway… that’s why I’m so flaky, don’t talk to people sometimes, and disappear from social media at random for days at a time. Because I’m a bit broken. And I’m just so damn tired.

8 thoughts on “My stupid head

  1. Oh I’m so sorry to read this, I suffered horrendously with migraines repeatedly for a long time, I began to think I was insane. Thankfully I don’t get them very often now, but I remember distinctly not being able to drive or watch TV or..well lots of things. I felt a bit like a hermit. I hope the piercing eases things a little xx

  2. Bless you! Sending love and hugs….
    I have the odd migraine….Maybe once every couple of months. I can’t imagine having them as much as you do.
    I hope you find something which helps…
    Thinking of you x

  3. I wish your gp would do something more to help you, I’d have barricaded myself in the office by now demanding more help. I’ve never really had a migraine as such I don’t think, I know I had a bad headache the other week which made me really weak. Couldn’t bare the thought of living with it daily.

  4. This is horrendous Zoe. Tbh, I just thought you were prone to sickness, I didn’t realise it was a chronic condition. I hope your doctor looks at the bigger picture soon xx

  5. Oh Zoe, I really feel for you xx You need to get your GP to listen to you, I know it’s hard sometimes. My nephews wife is just like you, and she’s just had an operation on her neck to ease her head. There are treatments out there but you have to stamp your feet at your GP and I know you are not like that, just try it and see what happens, maybe get James to come with you? As you know I suffered regular migraines for years (which only got better with pregnancy..probably why I’ve got five kids!) I’m getting old now and they are stopping, I always thought they would. But you don’t want to suffer until your fifty, go get it sorted. There are things they can do. I know the drugs are crap, they either don’t work or knock you out. I really hope you get the help you need soon. It’s no life living with pain like this xx

  6. Oh Zoe I am so sorry to read this. I really feel for you. Thank you for opening up to your readers and hopefully other people who are going through this. It must be so difficult keeping on top of everything while you feel so exhausted at life. I hope you can get some more help from the GP, maybe look into alternative therapies or case studies for other people suffering in this way. Sending hugs xx

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