It sounds strange to say I was relieved to be diagnosed with chronic fatigue syndrome (ME CFS). Why be relieved to be told you’ve got a chronic illness that has no cure and no universal treatment? (Please be wary of those sites that offer a “cure” in exchange for vast sums of money.) Why be relieved to be told they don’t know what the trajectory of this illness will take? Why be relieved knowing 1 in 4 people with chronic fatigue syndrome (ME CFS) end up severely affected and bedbound?
Where it all started…
It had all started in October 2018. Our daughter was in the midst of initiating herself into nursery life by picking up every bug, infection and virus there was. A rite of passage by all accounts. A really frustrating rite of passage. (I should add she’s doing absolutely brilliantly there and loves every minute so we’re very happy parents!)
Anyway, those infections decided to make home in my chest. My asthmatic chest. Chest infections and asthma are a bad combination in case you didn’t know already. Back and forth from A&E, I was getting to know the paramedic staff of the local area. I was quickly learning how to get the help I needed. In December, with none of us knowing what was causing these endless infections and subsequent asthma attacks, I was admitted to the respiratory ward at the local hospital. Tests, scans, X rays were all done but everything was coming back clear and normal. None of it made any sense.
Unfortunately, the next few months didn’t get any better. Back to back infections left me rattling with every asthma medication you could think of. I wasn’t getting any better. I appeared to be getting worse.
Tests, tests and more tests…
I have been very lucky to be a patient at a sympathetic GP surgery, who have listened to my concerns, my symptoms and have continued to treat each and every infection along the way. However, they (and I!) had wanted to know why a previously “well” (ish) person was now being struck down with back to back infections. They conducted every test they could think of. CT scans. X rays. Lung function testing. Every blood test there is. All normal. Clear.
You’d think one would be relieved by these apparently “normal” blood test results but not having a name for what seemed like a completely different world to just months ago was terrifying.
I was saying to every doctor that would listen that I had less energy nowadays than I did with a newborn baby, sleepless nights and cluster feeding included. I was having to nap twice a day just to function. On my good days I could walk maybe 50 metres. On bad days, I couldn’t stand.
I was referred to a consultant physician and endocrinologist, the clinical lead for chronic fatigue syndrome in the area. I was lucky enough to be able to see him quickly using private healthcare. He was wonderful. He listened to me. He didn’t dismiss me. I’d already read up about ME CFS and had wondered if this could be it. I had felt a lightbulb moment reading about a list of symptoms that I had all of but as usual, I worried about whether I’d be taken seriously. After all, this is a condition marred with controversy in the past. I showed him all the “normal” test results from the previous few months but explained how my (and therefore my husband and daughter’s) life had changed so starkly, particularly involving my mobility. He asked me about my day to day life, my routine and I spelled it out, as thoroughly as I could.
I asked him how he diagnoses chronic fatigue (ME CFS) and his explanation was refreshing: he trusts a patient’s description of their symptoms. The fact that my fatigue had a clear starting point, the fact that rest and sleep was never restorative and the fact that I had repeated infections all pointed towards a diagnosis.
I was lucky. It only took me 6 months to get a diagnosis. Not everyone is so lucky. Many people take years to get diagnosed. Many people have to fight their cause through doctors who don’t believe them or dismiss their symptoms as psychological.
Yet a diagnosis hasn’t honestly meant much. The consultant made it clear there isn’t a universal treatment and the options out there really are about coming to terms with the condition and making changes to your life that allow you to live happily and with purpose.
Who knows what the next few months and years hold but through this blog I will attempt to detail the changes I’ve made so far and will attempt to help those out there feel less lonely in their journey. I obviously won’t be able to offer that elusive cure that everyone is so desperate to get hold of (me included) but hopefully if I can share what’s worked for me it won’t seem all doom and gloom.
Comment below if any of the above has resonated with you. Do you have any chronic illnesses yourself? How long did it take to get diagnosed? How did you feel being diagnosed? I look forward to hearing from you.
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