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.


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