Me, Myself and Me

Do you like what I did there?

I’ve never blogged before. I haven’t really written anything non-work related since finishing my English Literature A-Level ten years ago. I’ve always been a keen reader, and dabbled in writing some pretty dubious poetry. I’ve often felt like putting my feelings on paper. So why now?

I’m writing now because for the past ten years I have struggled with my health. In the past two years it’s got worse. I’ve found some comfort in the online "Spoonie" community, and I feel like it’s time to become a more active member of it. In the spirit of full disclosure, the main reason for writing is that I can no longer participate in any of the sports or hobbies I used to enjoy and I’m going stir crazy. So, I shall say hello to amateur blog writing, my newest hobby.

Anyway, this isn’t a pity party or a platform for me to wail about my various symptoms. This is about acceptance and resilience, and finding a new way to be me. This is my personal experience of learning how to cope with multiple chronic illnesses—undifferentiated connective tissue disease, lupus, Hashimoto’s, Reynaud’s, ME and Fibromyalgia. This is about living with invisible illness and the misunderstanding and stigma around it.

On the outside I look like your regular healthy 28-year-old woman. I’m tall, slim and blonde haired. I have never had any of the rashes, weight gain or hair loss that are sometimes symptoms of these conditions. I look well, if a bit pale, but I haven’t felt well for years. That’s a typical British understatement actually. I have been experiencing chronic joint pain, brain fog and debilitating fatigue on a nearly daily basis since I was 24.

I have tried every anti-inflammatory diet. I drink bay leaf tea and I won’t touch an animal product. I use an acupressure mat and practice yoga when I can. I’ve tried CBD products. I take an average of 20 medications a day. I meditate, I practice self-care. I quit competitive rowing, then cross fit, then running, then weight lifting, then horse riding. Some days I involuntarily quit walking or being able to drive a car. I’ve been told to try Berocca, or iron supplements, or over the counter painkillers, or Tai Chi or, wait for it, "giving myself a pep talk." I have illnesses that can’t be seen. I look well and I sound well. But I am sick and tired, and I always will be. And I am even more sick and even more tired of attitudes around invisible illness. I’ve felt it at work, with team mates and with friends. It is impossible to describe how this feels to someone who lives in a healthy body. I’m sure every "Spoonie" reading this will have experiences of someone saying, "Oh, I’m tired too." It’s blood boiling, and we really could do without any sudden temperature changes.

This isn’t all doom and gloom. Although, I’m well aware it has been entirely gloomy so far. If you’ve stuck with this then I shall give you a round of applause.

I’ve lost a lot. I’ve lost friends and the ability to do sports I loved, and the purpose I found in sport. I’ve lost my sporty, muscled body and at the risk of sounding like a complete egomaniac, I probably found this harder than losing friends. From time to time, I lose my sense of humour and my ability to read quickly and take in information (which makes my job fun and games). I’ve lost the ability to plan in advance with confidence. I’ve also gained. I’ve gained friends in places I’d have never looked. I know people who deal with illnesses, far worse than the ones I have, with determination and grace. I have gone from someone who was on the go every minute of the day and didn’t spare a moment to think about how lucky I was to someone who is learning to slow down and appreciate what I have. I spend more time reading and learning. I’m turning inwards and sitting with myself, rather than constantly moving. I’m starting to realise that I have as much value now as I ever did. This is the most freeing realisation. I’m learning more about myself; about my resilience and weaknesses. I’m learning to live slowly in a society that values the fast paced go-getters. I no longer equate my productivity with my worth.