I wanted to talk today a bit about diagnosis and how mine came about and maybe ask some of you, how yours came about. Please feel free to share in the comments.
I am the only person I know who has a photo of the day they think their M.E started. It was 2002 and I was 29 years old, on holiday with my then boyfriend in Tenerife.
I had a good life, a good job and I had been working hard so I was tired and looking forward to relaxing. That day I went for an nap, thinking I’d refresh myself for going out later that night. All I really remember is being shaken quite roughly by a quite angry and unsympathetic boyfriend. I was confused, I couldn’t really understand why he couldn’t just let me have a bit of a rest, I felt extremely groggy and that’s when he dropped the bomb that I’d been unwakeable for a day and a half and he was effectively holidaying without me. He had taken a photo of me whilst I was unresponsive. He thought I was just being lazy. He hadn’t thought to call a doctor.
I struggled through the rest of the holiday and on for 3 months after that until I went to my GP and broke down about how tired and generally unwell I was feeling. He diagnosed me something called Post Viral Fatigue and told me to rest for several weeks and I’d be fine. There was no indication that this could become an ongoing thing. Three months later I went back to work but shortly thereafter I was made redundant (quel suprisé).
This began ten years of boom and bust, where I’d work and live normally for a few months but a couple times a year I’d end up signed off work for several weeks with ‘labyrinthitis’ or ‘stress’ or ‘exhaustion’ or ‘depression’. I got so many chest infections and caught every bug I walked past, I was almost always sick. I knew none of these diagnoses were quite right because even when I was “well” I wasn’t the same and struggled but hey, I’m no doctor, I didn’t challenge them or ask too many questions, I was too tired, just glad of the rest and a label to hang my horrid symptoms on.
I met Mr M.E in the middle of all this and we fell stupid in love. It was he who pointed out this cycle, to which I just said “oh it’s just me, how I am, I get these lazy phases” to which he laughed and said “you are the least lazy person I know! You are too driven for that. You can’t ever sit still!” So we talked about it some and I pushed my doctor a little more but we didn’t really force the issue that much.
Then a few ‘stressful’ things happened all at once, my beloved Daddo got sick and I was travelling extra to support my family. Mr M.E proposed and so I started planning our wedding (by myself obviously, I didnt need any help) and then I got head hunted for an exciting new job. I was working 12-14 hour days and flying home on weekends and there was about 6 to 12 months of non-stop action.
Then all of a sudden everything in my body ground to a halt. I had another ‘lazy phase’ but this time I wasn’t coming out of it.
I begged my doctor for help, finally one day saying, “I’ve been in here with the same symptoms for years and 4 times in 8 months, please look again – what the hell is wrong with me?!”
Not many people know this but I was so ill on my wedding day, I could barely get through it. I had to go for a lie down at one point and I hardly remember anything. Mr M.E said I threw the best party and he and everyone else had an absolute blast so I cling on to that and look at the photos.
I was so exhausted afterwards that I slept through chunks of my honeymoon, Mr M.E looked frustrated and lonely but I just couldn’t help it. It reminded me of that holiday in Tenerife so many years before.
How that glorious man found the patience to go through all this with me, I’ll never really know. I’ve said it before and I’ll say it again, he has quite literally kept me alive at times.
All manner of tests were done but everything came back normal, they kept telling me I was fine and treated me like a hypochondriac. I demanded to be referred to a specialist and to be fair they did that for me. But not in Neurology or anything sensible, they sent me to Infectious Diseases.
It was there, in August 2012, three months after my wedding day, that a kind Greek doctor who was actually a locum did some basic tests and as soon as he saw I couldn’t keep my balance walking in as straight line and was exhausted he said the not so magic words “this is CFS/ME”. I’d never heard of CFS…… but when I started reading about it my whole life just suddenly made sense.
I’ll tell you what went down after that another day because this piece is long enough already but I often wonder if I had been diagnosed sooner, if I could have managed my condition better and not exacerbated it to the point it is now at.
Final thoughts and a different experience:
When my baby sister started getting sick at 29 (coincidence?) I told her straight away, this sounds like CFS/ME and she asked the question of her GP.
I nagged her, I cautioned her, I begged her not to make my mistakes in the hope that if she took it on board quickly and slowed down that perhaps she could be saved from some of the worst of it and stay in the ‘mildly affected’ zone. Her doctors were great and she was diagnosed after about 8 months I think? She was brave and sought out new employers who would support her. Two things I didn’t have straight off the bat.
I am glad for her cos she is a great person and doing really well, having just won an award in her new profession (but I am also weirdly jealous that I too didn’t get these breaks, in that siblingy way where you want the same as the other has)
Time will tell if she has slowed down enough or if this is a genetic price we both have to pay that just gets worse as you get older. Our Aunt has it too, you see.
So what are your stories?