Up until recently I have felt that I have been making slow, steady improvements in how much I can do before triggering a fatigue ‘crash’ or a severe migraine. I’ve been able to push the distance I can walk, how far I can drive, how much time I can spend being a parent / wife / friend / professional vs the amount of time I need to rest. But for several months now I have noticed that these improvements seem to have plateaued and I seem to be stuck in a bit of a ‘boom and bust’ cycle where I slowly push, only to crash and need to spend several days in bed or on the sofa. The rest of the time I spend feeling like I am just about surviving, certainly not thriving. This plateau has seen me re-enter the world of constant research, to try and figure out if there are tests I haven’t had and investigate possible treatments that I haven’t tried yet. I am currently waiting on a second opinion from a neurologist to make sure that the pain I have had in my head for almost 12 months solid now is definitely an intractable migraine, or if something else could be going on. I have been referred to the pain clinic to investigate botox for the head pain since I have now tried cocodamol, meloxicam (a NSAID), amitriptyline, propranolol, gabapentin, topiramate, six different triptans, CBD oil, feverfew, a daith piercing, menthol and peppermint oils, acupuncture, chiropractic, osteopathy and meditation/mindfulness without any relief at all (not to mention the operation I had to remove a sinus infection in case that helped. It didn’t).
I’m also about to start taking a medication that I hope will help my orthostatic intolerance, since I still struggle standing for any length of time but this medication comes with a long list of side effects, which includes headaches – obviously something I really don’t need! So much of this journey to recovery is trial and error, weighing up potential benefits against the risk of side effects which may make things worse. I am still making choices between how much I feel I can push myself and the risk of crashing – sometimes these choices pay off (I went to a fabulous wedding recently where I actually danced! And didnt crash too badly afterwards), sometimes they don’t (I went into London for work on a day I usually work from home and I ended the day in a heap on the floor as it was just too much).
Part of me wonders whether this is it, if I have reached a level of health that I just have to settle for. But I am not ready to accept that, so on I go – driving myself slightly mad searching for that elusive test, treatment or medication that will help just that little bit more and allow me to truly feel like I am participating in my life, rather than surviving day to day.
2 Comments Add yours
Oh Katy, I really feel for you knowing how hard you work (both at work and home) as well as investigating your awful health issues and how you might overcome these. So wish there was a magic answer for you but keep smiling (and looking as lovely as these recent piccies show) and I’m sure there must be light at the end of your tunnel. Xx
LikeLiked by 1 person