Saturday, February 15, 2014

An Introduction

I'm Sally, a woman in her early 20's who is studying to be a social worker and who lives with Myalgic Encephalomyelitis (sometimes-- unfortunately-- called Chronic Fatigue Syndrome). I've found other people's ME/CFS blogs hugely useful in my own experience with the illness, so I thought I'd start one in the hopes that it helps other people.

ME is a chronic nuero-immune illness that causes persistent exhaustion, neurological symptoms, gastrointestinal problems, chronic pain and a whole bunch of other awful stuff. For me, my ME means that on a daily basis I deal with exhaustion, pain of many types, nausea, dizziness, weakness, brain fog, poor sleep, thermostatic instability and sore throats. Alongside those symptoms are my 'what the fuck symptoms' like feeling as though my brain itches. Central to ME is Post-exertional Nueroimmune Exhaustion (aka post-exertional malaise), which basically means that exertion makes all the symptoms worse.

ME is still very poorly understood. There are no widely accepted bio-markers for the illness, so it is diagnosed by its symptom complex and by excluding other possible causes like thyroid disfunction, diabetes, MS or lyme disease. For me that meant tons of blood work, urine analysis and a trip to see a neurologist. I was lucky and got diagnosed with ME very early on in the illness by my GP. Many people spend years ill and see 10+ doctors before finally being diagnosed-- all the while getting more ill because they've not been correctly diagnosed and treated.

There are many different diagnostic criteria for ME/CFS out there, some more narrow than others. The broadest diagnostic criteria (like the Fukuda criteria) are often thought to be too broad and can result in people who actually have illnesses like Lupus or Multiple Sclerosis being diagnosed with ME/CFS. The more narrow criteria (like the ICC or the CCC) tend to focus more on 'classic neurological ME'. Lucky me, I meet every diagnostic criteria I've seen for ME/CFS, so it's pretty damn clear that I have this illness.

There are currently no known treatments that directly target or cure ME. Treatment for the moment is focused on illness management. That involves pacing to use our limited energy wisely (and not over-exert) and symptom management to control symptoms that can be managed using drugs or non-medical intervention.

I got ill with ME in the way that many people do. In late January 2013, I got a nasty virus and I never got better. The acute virus cleared but I was left with what I now know is ME. I never thought that at 21 I'd spend so much time thinking about things like my mobility, my quality of life and constant illness management. But here we are.

Alongside my ME (and probably because of it) I have Postural Orthostatic Tachycardia Syndrome (POTS), which makes being on my feet quite difficult. POTS is when your heart-rate dramatically increases upon standing. My body seems to confuse standing with sprinting and that is very unfortunate.

In practical terms, my ME and POTS mean that I'm able to do a lot less than before I got sick. Keeping up with work is incredibly difficult, my mobility is severely limited and I struggle to find the energy for simple things like making dinner or having a shower. My days are meticulously planned around how to conserve my energy. Besides going to work, I spend the majority of my time either in bed or in the chair next to my bed.

So that's a bit about my ME. A bit more about me though: I have a cat that I love very much, Bella.
(Photo description: A picture of a grey and white cat sitting on a wooden rocking chair with a purple blanket draped over it)

I'm in my final year of a social work degree. I'm currently on placement working the Children's Disability Team. I try to practice from a Radical Social Work perspective, which basically means that in addition to working with individuals I join efforts to challenge and fight the systems that oppress people. I live in Brighton, England. I've spent my life moving around the world (military family) and spent a few years living in India before I moved here. Meditation and mindfulness are important to me, both as illness management tools and general ways of seeing/living life. 

5 comments:

  1. Hello Sally - Great start to your blog. Looking forward to reading more. From another Sally with ME. xx

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    1. Lovely to hear from you and meet another Sally with ME!

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  2. Hello Sally, I too am a relatively new blogger. I think you do well to manage to work with ME. I did at the beginning of my illness until I completely collapsed. It`s important to pace and rest so you can stay in work. It`s important not to push yourself too hard. Look forward to your next blog xx

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    1. It's nice to hear from you. I'm working quite hard at the moment to make work sustainable in the long run. For me that means working from home quite often (I can get lots more done from bed!), making adjustments to how I work and taking a lot of care to pace my days wisely. That said, I certainly do still need reminders to not push too hard, so thanks for yours :)

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  3. Congratulations, I have nominated your blog to receive an ME & CFS & FMS BLOGGER AWARD. Please visit http://roslemarchand.blogspot.fr/ to collect your award

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