I have a new piece of furniture in my bedroom and it has been the perfect excuse for a de-clutter. So, yesterday I, in half hour bursts of energy, threw stuff away and sorted old books. I came across my 2008 diary. My M.E symptoms began in 2008 and it makes for an interesting read! I’d forgotten a lot of things that happened. That diary is the inspiration for this blog post.
I have been suffering from Labyrinthitis/Vertigo for the past 9 weeks. This is exactly how my M.E symptoms began in 2008 (Labyrinthitis-Vertigo-permanent migraines). I will be going to my GP next week to ask for new medication. Lessons learned from last time around should hopefully prevent months/years of tests and specialist appointments. Last time it took 2 years to be diagnosed with permanent migraines. Migraines are a symptom of M.E. All of my symptoms were improved with the beta-blocker Propranolol. I am hoping that my GP will be able to look at my medical notes and find the letter from the neurologist saying if I have these symptoms in future to prescribe me Propranolol. I really hope I don’t have to start back at square one with new tests.
This is an extract from my diary – Tuesday 1st January 2008
2007 has definitely been one of my worst ever years despite getting my masters. This illness is making my life drain away and it doesn’t feel like I have much left. 13 months of misery is too much to bear without being diagnosed. It feels as if I’ve lost most of my friends because I can’t put the time/energy into those friendships, it now grates every time I have to decline invitations due to my health. I just want to be diagnosed in order to be able to control my symptoms and subsequently my life.
This was around 2 years before my M.E diagnosis. Little did I know that even a diagnosis wouldn’t give me control. M.E is like a blob of jelly, it constantly changes shape and fluctuates minute by minute, it is very much an uncontrollable illness.
Extract – Monday 17th March
Had a bad attack last night. Thank god I wasn’t at work. Yet again it started with crunching in my ear, then the room started spinning. I wasn’t sick even though I got mum to get me a bucket. Lasted a couple of hours this time. Couldn’t stop crying. Sick of being ill. Why can’t I just get on with my ****ing life?! Got specialist on Thursday, praying he can help before I lose my mind. Off sick for the next couple of days as I feel washed out and ear still crunching.
At this point I hadn’t been diagnosed with permanent migraines. Touch wood, I haven’t had a migraine for about 5 years. I get all sensory migraines that affect EVERYTHING. I can’t stand, my vision is like a kaleidoscope, I lose my hearing, I can’t smell anything and I have diarrhoea and vomiting all at the same time. These symptoms start and reach their peak within 30 seconds of starting. It’s a very scary experience. My body just seems to implode. I am very fortunate that my migraines have only happened in the evenings when I am at home. I lived in permanent dread that I would be out in public when an attack occurred. CBT helped to manage my anxiety and fear of collapsing in public. Which is why now, in 2016, I am hoping I can nip my dizziness in the bud before a full migraine happens.At the moment I have dizziness, nausea and a crunching sensation in my left ear. Exactly the same as in 2008 at the beginning of having symptoms.
I am so glad that I used to sporadically write in a diary. My memory issues mean I forget the advice, medication and diagnosis given by doctors. I am hoping if I take my diary with me I can show my GP that my current health is just history repeating itself.