Needing a carer from a sick person’s perspective | ME Association

Hello, my name’s Lori- AKA ‘Bud to Bloom’, a UK based disability, and mental health blogger living with Ehlers Danlos Syndrome, ME, and a host of other comorbidities. 

My journey with chronic illness started at age 13, and like many spoonie warriors it appeared to come from nowhere. 

However after a few years I was given the diagnosis of CFS, however this wasn’t the initial reason I required a carer, it was the pain caused by the onset of my underlying genetic condition (EDS). This greatly impaired my physical activity and profoundly changed the course of my life. 

Over time I lost the ability to get washed, dried, and dressed with autonomy. I could no longer climb stairs, make my own meals, organise my tablets, or travel independently. As a teen I just missed out on gaining the independence that all of the people of my age were experiencing, and doing so freely; so as my mum was my carer, it still felt like my she was doing everything for me like, as I required even more support with personal care and chores than I had in years. It isn’t difficult to see why I felt this way, I think many would do so in this position, especially when you didn’t even understand what was going on.

Now I can look at these experiences with understanding, for we just want to feel autonomous, especially when we feel like our conditions are so restricting, yet we are fully aware that our capabilities are dependent on our energy and pain levels, and we oftentimes aren’t able to do everything we want to, so outsourcing what we can to someone so we’re less fatigued, reduce our risk of overdoing it, and have more energy to find enjoyment aside from fulfilling care needs, is really beneficial. But as my conditions progress, I find my “spoons” are hardly enough for the fun stuff, which I have come to accept over time. I cannot change this reality, but something which has always motivated me that I can still have control over how I react to these feelings and challenges; but we’re still human and we are certainly not immune to bad days, or grieving our lost abilities, opportunities, and the life we once thought we’d have. 

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