Where do I start?

When I was first diagnosed I was both shocked & relieved, I'd been presenting with the same symptoms to doctors since 1996, being told various things:

 “It’s understandable you’re tired, you’ve got a lot going on in your life right now”.  

“Your blood sugar tests are normal, you’re not diabetic”. 

“It’s just a virus, there’s nothing I can do for you, just rest & take plenty of fluids”. 

“These are symptoms of depression”.

“Your iron levels are normal, you’re not anaemic” 

“the tests showed no abnormalities” 

I experienced the same “virus” 2-3 times every year since 1996, wiping me off my feet for 2 weeks, and taking at least a week to recover from it.   I’d given up on traditional medicine, I hadn’t been to see a doctor in nearly 2 years, despite not being of good health.  I felt that there was little point, I did not want to be told that there was nothing wrong with me again.  I did not want to feel dismissed, as if I was making a big deal out of nothing again.  But earlier this year I decided that I was going to go back to the doctors & I was going to continue going back until they were able to tell me what was going on with my body.   So that’s what I did and I was referred to a Fatigue Specialist, not really being sure why because feeling tired wasn’t the symptom that was the worst.  I had aches & pains all over my body, the whole time I was getting spots, bloating, diarrhoea, bruising easily, not being able to concentrate/focus, forgetting words, brittle nails etc etc.  All little “niggly” symptoms, but ones that were persistent & I felt that I was undernourished & that food intolerances were the cause of my symptoms.

I’d been “jogging” – half walking, half jogging, taking it very easily, but building my fitness and stamina over a period of months & I was starting to feel good about my increased levels of fitness, along with doing my yoga more regularly.  Yet I found when I was jogging I’d have a particular pain down my left thigh, it felt like it was inside the bone.  I observed it, recorded it as part of my training records, so that I could track my progress & work out whether there was something I was doing to cause the pain.  Then after 2 weeks of the same pain every time I jogged 3 times every week I noticed that my thigh wasn’t hurting that day, which was great, but instead my hip was hurting instead.  It seemed completely arbitrary that the pain would just “jump” for no apparent reason, there was no injury or particular strain on that area of my body at all.  It was in that moment that I first thought, possibly this could be Fibromyalgia, but I let that thought go as quick as it had come.

It was in the consultant’s office, after 2 hours of questions I asked him for a “label” so that I could start to understand what was going on.  He confirmed that I did indeed have “Chronic Fatigue Syndrome, Fibromyalgia and Irritable Bowel Syndrome.”  They weren’t at severe stages, but that’s what I had alright.

My first reaction was relief, now that I know what’s wrong with me I can work towards rectifying the problem.  I haven’t read extensively about ME, and I choose to call it ME for a few reasons; it’s easier to type/say than Chronic Fatigue Syndrome, most people understand a little about what ME is, or at least they’ve heard of it, and ME seems more like a real illness, not a “syndrome”, something that is “all in the mind”.

While I would not, for one milli second deny the power of the mind over the body, I do deeply resent the idea that I could “instantly” decide that these symptoms I experience on a daily basis did not exist & they would miraculously disappear, believe me, I’ve “decided” that I don’t experience this pain in my body, in my head.  My body appears to be in disagreement with me.

So, the course of action I choose is to discover exactly what the underlying causes of these symptoms are, so that I can “undo” what I have created.  I suspect that diet, yoga, meditation (awareness) will all be deeply beneficial, for I have experienced reprieve from symptoms when I have implemented an extremely rigid diet & exercise routine.

For now, I've created a spreadsheet where I record my activities, by the hour, what I've eaten, if / how much I've slept and the symptoms I've experienced.  Over time I'll be able to analyse the data for any correlations.  In the meantime, I look forward to bringing awareness and attention to my body and how it reacts to the various things I expose it to (rest, exercise, foods, sleep, etc, etc).

This is the start of a wonderful journey of healing.