It is now nearly six years since I was diagnosed with Chronic Fatigue Syndrome. After thinking initially recovery would be a couple of years, I can’t believe I am now so far down the road. Today I thought I’d share how I was diagnosed with Chronic Fatigue Syndrome as it can be a difficult illness to diagnosis due to there being no specific test for it.
I have always been a tired person – my mum would have to drag me out of bed most mornings through my teenage years, and in my working life I would often have to go to sleep in my car on my dinner break to make it through the day. I’ve been known to get home from work at six, go to bed until nine and then go for a night out. I always knew I needed more sleep than most but never saw it as anything to be concerned about.
When Holly was born we lived in America and when John was at work I was totally alone, save for the dog. If there was anytime I thought I would have had trouble it would have been then, however I had no problems at all. My mental health was really good and whilst I was tired, it was no worse than any new mum.
When Jack was born it was a different story, though. I’d suffered with depression in the past, so was aware of the symptoms, so when I began to find things all too much and didn’t want to get out of bed every morning, I knew something wasn’t right. I was suffering from terrible headaches, was constantly completely drained and just wasn’t interested in life. I would dread having to leave the house with the kids and felt panicky of being on my own with them at all. Often I would arrange to see people and probably most times overstay my welcome at their house, anything to not be at home and alone.
After speaking to my health visitor about my worries, she encouraged me to seek help from my GP. At first I was knocked back and that was a huge blow, however after speaking to my health visitor again, I pushed for a further appointment and was referred for counselling. Initially I was diagnosed with postnatal depression and given fifteen sessions of talking therapy. This was actually hugely beneficial for me as I had been holding onto so much from my youth, this was an opportunity to deal with it all.
However after these sessions, my counsellor didn’t feel that it was actually PND I was suffering from but perhaps ‘normal’ depression and something further. I returned to my doctor and by this point had got a good rapport with one GP in particular and it was him who suggested CFS. It was an illness I was aware of, but didn’t know a huge lot. In fact it turned out I really didn’t know anything, when I look back now. However before you can be referred to the CFS clinic there are numerous tests you need to have to rule out other illnesses, such as anaemia or thyroid problems. Once these came back all clear (and believe me I’ve had them repeated numerous times, just in case it could actually be a much easier illness to fix). Following this I was referred to my nearest CFS clinic, and fortunately there was one in my local town, who in turn diagnosed me with chronic fatigue syndrome.
I spoke to the main occupational therapist at the clinic, who is someone I have come to know quite well over my time and who I continue to see, and she took me through the basics of CFS – what the pre-disposers are, the typical symptoms and what can lead many people to become ill. It turns out that when I’d suffered with numerous bouts of bronchitis when I started university, it could have triggered the illness and then, when I had children later on, it tipped my energy that step too far to where it all came crashing down.
It took many sessions for me to actually get a small grasp on what this diagnosis meant and how to manage the illness, in fact management of it is one of the hardest parts for me and ten years down the line, something I still struggle with. Over the years I’ve had to change my lifestyle dramatically and with much resistance. Sometimes I don’t feel like I’ve come any further than I was all those years ago, but then my CFS lady reminds me what state I was back then – hardly able to get up off the sofa, having panic attacks and doing way too much then crashing terribly.
If you are worried you may have this illness I would first suggest speaking to your GP, or midwife if you are in their service. If that fails contact your local CFS centre or support group. If all else fails try charities such as Action For ME or The ME Association for information and advice. Chronic fatigue is not an easy illness to live with and you will find many cannot or do not want to understand. But there are people out there who will give you the support you need and may often surprise you. If anyone is struggling and needs someone to talk to, please do message me on Facebook or Instagram, I am always happy to lend an ear.