She Might Be Loved
AD How Being Disabled Affects Daily Life

I love to use my platform to educate people about disabilities and chronic Pain and illnesses. I’ve talked a lot about disability on my blog and across my social media, offering support to disabled people and suggestions and advice for things like finding a wheelchair or going through a PIP assessment. Today I want to talk directly to able-bodied people and give you a glimpse into what daily life is like when you have a disability. I will be talking from my own experiences as somebody with chronic pain due to nerve damage, and CFS/ME. It’s worth bearing in mind that every disabled person will have a different experience and I can only speak to my own experience – but for now, welcome to a little glimpse of my world and how being disabled affects daily life. Waking Up The first thing that most people do every morning is wake up. This can mean different things for different people – some people need to begin their day with medication that will help them get out of bed so that they can get going in the morning. Others may have used an Oxygen Concentrator overnight and have to deal with putting their equipment away as soon as they get up. Living with chronic pain means not knowing how you’re going to feel every day when you wake up, and how many spoons (energy) you’re going to have that day – so an easy and accessible morning routine is essential and the flexibility to go back to sleep if I need to really help me manage my pain. If it was to get up and start doing lots on a bad day, I could turn that bad day into a bad week. I’m very fortunate to have that flexibility and not everyone can, but it’s all about pacing and balancing tasks. Working Being disabled does not mean being unable to work in many cases. While some disabled people are able to go out of their homes to work, I work from home. I wake up and head straight to my desk, doing anything else in between like getting ready would waste energy that I don’t have. My working life is very variable, and I have tailored it to my own needs – for example, if I’m having a good pain day I will take advantage of that and take multiple photos in a variety of looks for my blog because I can’t guarantee that I’m going to feel able to do it again soon. My office is set up to be accessible and has equipment like a back massager and a comfy office chair so that I can manage my pain levels while I work. We’ve designed it so that everything is within my reach and I can work independently.  Relaxing Living with CFS/ME means that I deal with a lot of fatigue – CFS means Chronic Fatigue Syndrome – so while I might be forced to spend a day sleeping, this doesn’t mean that I am relaxing. This can be a common misconception from able-bodied people, who don’t understand the pressure that is put on bodies that go through pain every day. Whereas an abled person might have a busy day and feel tired, they’ll go to sleep and wake up and feel fine. My tiredness never goes away. I could spend days in bed and still feel tired.  My time relaxing is mostly spent gaming, as this is a chance for me to socialise with friends and it’s a hobby that is low impact and lets me immerse myself in a gaming world and forget about the day’s work I’ve just done. Although most of the time my friend and I brainstorm ideas for my blog and Instagram. I can’t sit comfortably downstairs to watch live TV, so instead I surround myself with fluffy pillows, I even have a special massager for when I game, and I talk to my friend and brother on my headset. Honestly, gaming has saved me during this pandemic and not being able to see them. Self Care One thing that able-bodied people really take for granted is the level of self-care that they are able to do. Many disabled people need assistance with things like washing, brushing, and drying their hair, visiting the toilet, washing their bodies, and preparing meals. I live with my boyfriend and my parents, and they help me when I need them to – my Dad has become a pro at dying my roots and he even dyes it fully now as he’s much neater than me!  I really enjoy doing things like getting glammed up and doing a full face of make-up, but I need to take into account my pain and fatigue levels before I can get started – there’s no point in getting glammed up if I’m going to need to curl up and sleep as soon as I’ve done it so my days can change drastically, and plans will be canceled.  I am always learning about my disability, and I share as much content about it as I can so that we can all learn together. While I love sharing posts about disability pride and how valid and worthy all disabled people are, I think it’s really important to teach people about the reality of my experience, so that they can understand things like why disabled people fight for things like reasonable adjustments to cut down on pain or stress, for example.  What do you wish able-bodied people understood about your disability?

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