So, I'm aware not a lot of people will read this...I guess it's more for myself to look back on or the people who are closer to me to read. My story has still not reached a conclusion and I think that's one of the hardest parts. Will go back to the beginning...
It started in June 2017, I was staying at Stuart's aunty's house as we were house sitting while she was on holiday. I remember every time I was waking up after plenty sleep, it was like my body just had zero energy. Not melting into the bed in a nice relaxed way, it was a feeling of exhaustion within every part of me. I didn't think too much of it but I did wonder how on earth I could be so tired when we were having a pretty chilled time looking after her house and dog.
During this month, I had a sudden headache at work one afternoon which was soon followed by extreme dizziness and feeling really sick. I managed to finish my shift and thought it'd be something I'd just sleep off. Unfortunately, I've been dizzy/lightheaded ever since. That's 16 months of feeling spaced out, like I'm not quite here. It's the strangest feeling to try to describe to people...I'm not spinning dizzy, but I'm almost floating/walking on clouds. Like that nice drunk feeling you get in your head but it isn't nice at all, it's isolating and awful.
From June to October I visited the GP several times, and was given different versions of anti-dizziness/nausea tablets (which are also prescribed for anxiety at higher doses). Words like vertigo, labyrinthitis, and migraines were thrown around. I was put on a waiting list to see an ENT doctor.
October to April passed, and I had stopped taking any of the tablets prescribed during this time. I felt like the symptoms weren't as bad but really I think I had just learned to cope with this new "normal". I was still socialising at this time, going out drinking, visiting cafes/restaurants, going shopping etc. I went to the ENT appointment and my ears were fine, the suggestion again was migraines. I got put on another waiting list for vestibular rehabilitation therapy and to see a neurologist.
April to July were still pretty much the same. But then it got to August, and my symptoms were getting more intense. This is a list of what I was (and still am) coping with on an almost daily basis:
- Dizziness/lightheadedness constantly
- Head rushes when getting up from sitting
- Nausea/loss of appetite
- Derealisation
- Heart palpitations
- Head pressure
- Hot flashes
- Tingling in hands
- Fatigue - constantly feeling like I could sleep
- Weak legs
- Mouth ulcers
- Bloating after pretty much every meal
- Light/noise sensitivity
- Disturbed vision
- Anxiety/panic attacks
And now we've made it to October. I've had my rehab therapy appointment, my balance is pretty much perfect so once again, migraines have been suggested. I'll find out what the neurologist says this week.
I can't finish this post without talking about the fact that I've never once been asked about my diet/lifestyle. I've been vegetarian for 12 years, and vegan since February. I'm well aware of the fact that I could be deficient in many things, but nothing has been checked. 3 years ago I got blood tests done which showed I was "dangerously low" in certain vitamins/minerals, but I was only advised to eat better. I demanded blood tests last October (so a year ago now) and was only told everything was "fine", but I just don't have a lot of trust after being left to live like this for so long now.
The past 16 months have been the loneliest of my life. Yes I've done lots of fun things over this time, and I've started my own business! But everything has been clouded by this fucking health problem. I've reached my limit now and feel so much fear/sadness/anger over the whole thing. I've forgotten what it feels like to feel normal. I've had some of the lowest days imaginable, my mental health has gotten so bad and I barely do any of the things I used to. I fight every day, an emotional & physical fight that isn't visible to others.
I am so lucky & grateful to have the most loving & supportive boyfriend who's been there through everything. Everyone who has listened to me talk about my problems as well, I'll forever appreciate that. I'm also meeting up with a vegan nutritionist this week. I truly hope with every part of my being that I'll discover some sort of answer soon.
Claire x
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