Frustration and hope

I’m frustrated. Frustrated that I had mildly disturbed sleep last night (one bad dream) and that this has triggered another severe migraine. Frustrated that I can’t currently see properly and that the tapping of the keys as I type this is painful. Frustrated that I’m currently signed off work sick as my employer refuses to put in place any of the reasonable adjustments that I requested prior to employment, so my workplace is making me more ill. Frustrated that my employer is using my sickness as a stick to beat me with, rather than helping me to address it with low cost (or free) adjustments to my working environment. Frustrated that I will probably lose the job I’ve desperately wanted for a long time because of this. Frustrated because they should know better. Frustrated that I have a clear treatment plan in place at King’s College London, but that I will be waiting six months to get the treatment. Frustrated that it took me ten years to get that appointment at King’s. Frustrated that the government are starving the NHS of money so that they can use these sort of statistics as an excuse to sell off this great institution for profit. Frustrated that all that has been suggested to me in the interim period before I get treatment by my GP is “mindfulness”; strangely, deep breathing has not yet improved my health. Frustrated that my life has been “on hold” for the past decade. Frustrated at lost career opportunities, travel possibilities and general lack of quality of life.

But I’m trying to remain hopeful. Hopeful because my Theraspecs just arrived, and maybe they will help with my general light sensitivity and the awful lighting at work. Hopeful that the treatments I will get in six months time will be effective. Hopeful that even if current treatments don’t help, there are new ones on the horizon that could be revolutionary (although, also frustrated that my migraines were “too chronic” to get on a clinical trial for this new drug). Hopeful that the proofreading course I’m taking will pan out, allowing me to work more flexibly as my health allows. Hopeful, because every day I’m surrounded by supportive friends, who can always make me laugh, and don’t judge me for cancelling plans yet again. Hopeful, because I can still laugh at myself; I look absurd most of the time, with ice packs/Cefaly/giant pink glasses on. Hopeful that one day I might be able to go back to live music events, or even occasionally have a late night without a migraine catastrophe occurring.

Hopeful that things get better.

Damning statistics

I have chronic migraine. This is something that developed quite suddenly; I’d had 3-4 migraines throughout my life previously, but then aged 21, I got a migraine that didn’t go away for two years. I’ve now had ten years of getting more than 15 days of migraine per month (which is the main diagnostic criteria for ‘chronic’ migraine as opposed to ‘episodic’).

I’ve tried a plethora of treatments, but none have stuck. I’ve struggled to get my condition taken seriously by GPs (the gateway to further, more specialised treatment) and subsequently have only managed to see a neurologist four times over the ten-year period. However, there is light at the end of the tunnel, as I have finally been referred to the world leading neurologist, Professor Peter Goadsby, at Kings College London. Sadly, my appointment isn’t for another six weeks, but I’m trying to remain positive.

I had stopped keeping a migraine diary, as I found it depressing and it had not helped me to identify any triggers, but have started again now there is the possibility of new treatment on the horizon; and thought it might be useful to share the statistics to give people an insight into my current condition.

I’m using an app called Curelator at present, which makes some great claims about being able to identify triggers and protectors, but I think it is struggling to work out mine as I have such frequent migraines.

On the diagram below a pink blob is a migraine day, a blue day is a pain free day. The 19th January was the last day that I didn’t have a migraine. Which was almost three months ago.

Migraine calendar overviewAnd that’s why I stopped keeping a diary. I find it really difficult not to look at this and give up all hope; during this time period I have stopped one medication and started another (neither of which appear to have any real positive effect as you can see), and started a new job. A job I felt so amazing about getting, in the field I’ve wanted to get into for years. I’m desperate to do well at this job, but sadly my health is proving to be even more of a barrier than normal. I only work part time (for fairly obvious reasons) but have already had to have a lot more days off than I would normally have anticipated; it’s a six-month probationary period, and if I was my manager I would be seriously considering sacking me on capability grounds by now; if I’m not able to be in the office, I’m not able to do the work.Migraine stats cropped

This is a particularly bad patch for me, but is unfortunately not as unusual as I’d like. Some days I’m able to function relatively normally with only a ‘mild’ migraine – my head only feels like it’s being squeezed in a vice or is just dully thudding like the bass at a loud concert. On others, I’m completely incapacitated, trying to deal with the sensation of a railway spike being driven repeatedly through my eye, visual disturbances, extreme sensitivity to light and sound, inability to form coherent sentences and vomiting. On those days, the only thing I am capable of is retreating to bed with several ice packs wrapped round my head to try and sleep it off. Even after the migraine itself has passed I have to deal with the postdrome; a feeling not unlike a hangover, with extreme fatigue and a general ‘spaced out’ feeling.

This illness has taken so much away from me over the years, part of me is determined to try and keep my new job and to excel at it. The other (perhaps more sensible part) suggests that maybe an office job is not something my health is capable of withstanding right now; which then begs the question, what on earth do I do instead? Sadly, my illness is not severe enough to qualify for any sort of disability benefits, and I need to earn money somehow. Answers on a postcard please!

But, there is a lot to look forward to; a clinical breakthrough appears to be in the process of being made with regards to a new migraine treatment. Four different companies are researching it, the new treatment targets the CGRP neurotransmitter using antibodies, and has had some amazingly positive results in early clinical trials (such as reduction in migraine frequency by 75-100%); all four are now in the final stages of testing, and if this is successful could be available in around three years.

Sometimes acceptance of this condition and the havoc it wreaks is difficult. But, I always live to fight another day, try another treatment and get as much as possible out of whatever hours I am able to; I’ve got some great friends around me. I’m hopeful that my new neurologist will be able to give me some other treatment options, and maybe this time we’ll find the magic combination that gives relief in the long term.

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Also; go and read The Lumberjanes. It brings me so much joy.