24 Hours of Living in a Broken Body

The way I live is very unique to me, and to my needs. The entirety of my care is what's officially labelled as: 'Client Led', this basically means that I have no set routine and I tell my carer what I want when I want it. For me this is the best way to remain in control of my life, even though physically, I'm completely reliant upon another person. I have a terrible sleep pattern due to insomnia and crazy high pain levels. Regardless of how early I go to bed I'm rarely asleep until after 3am, so my day doesn't generally begin until after 1pm. Usually I'm awoken by a cold nose pushing into my face, followed by a long tongue in my ear!

No this is not my carer behaving strangely, it is in fact my small rescue dog telling me to get out of bed and give her some attention! So, like the well trained human that I am, I call my carer and we begin the process of getting me safely and comfortably out of bed and into my electric chair. The entire process can take no less than 45 minutes and involves hoisting, slings, personal hygiene and lots of clear communication.

Then it's time to drink tea, and to eat! Black, Lady Grey Tea is literally my weakness when it comes to that first drink of the day. I love a huge mug of tea, that can last at least as long as it takes me to eat my breakfast and take my supplements. I'm always fairly mindful about what I eat, for two reasons really; firstly living in a broken body means I burn very little energy, so weight gain can be a massive issue if I'm not careful. Secondly I'm vegan by choice so I need to ensure I get a balanced diet with plenty of protein. The next few hours of my day are filled with drinking more tea, checking emails and messing around on Facebook. Personally I prefer all communications from official channels, such as: Continuing Health Care (CHC), District Nurses (DN), Occupational Therapists (OT), and Care Agencies to be sent via email. Keeping a paper record of who has said what is essential, because whilst I genuinely believe each professional is doing the best they can, sometimes things can get forgotten, or become misunderstood. At this point being able to locate the email which removes any confusion is really helpful and even the most experienced professional can't argue with an email they either wrote themselves, or agreed to in writing! Then it's time to relieve myself of all the tea I've drunk! This usually takes up to 30mins and once again involves slings, hoisting and lots of clear communication. For me each movement is really painful, so it's essential that the person assisting me, generally my live-in carer, can both understand me, and trusts that I know what I need. Whilst trusting me may sound like something easy for a carer, it actually can be a real challenge because most experienced care workers are more used to working with older people who generally have some form of dementia. The secret to getting around this is to try and find a long-term, live-in carer who has a fantastic attitude, but is fairly new to providing care, then they're really happy to follow my lead! By this time my tummy is making grumbly, annoying sounds and it's time to think about food again. Generally I'll eat salad, or warm vegetables, with a source of protein for dinner. It's important for my feeling of control that my carer cooks with me, not for me. I need help with the physical stuff, not the brain work! Oh and I drink more tea of course! Now, finally I can begin working on my projects for the day; these usually include a little writing, a little creating and playing with my dog… Ok, let me give you a few details about my dog: EllaBella is a rescue dog from Hungary Hearts Dog Rescue and has been living with me for a little over three years. She is very much my baby and everything she needs to be healthy and happy she gets. I have a dog walker who takes her out with other dogs three times each week and she has access to a good sized, secure garden at all times. She goes to the groomer as needed and has good quality dog food and treats. So yes, even with a broken body I can still keep, train and fulfil all of my dog's needs, sometimes it just takes a little creative thinking! Finally we're at my favourite part of the day… For the rest of the evening I'll catch up with my friends and spend time remotely with my boyfriend via Discord or SecondLife. Yes I have a boyfriend, yes we do spend time actually together, yes we have sex and no he's not my first! I plan to write a whole post about relationships; how to find your match, how to date online and how to discuss disability. Bedtime is a mixed feeling of relief and frustration for me! Whilst I'm happy to get out of my chair and change position this is also when my pain is at its worse. Thankfully I now, finally, have a long-term night carer who can confidently reposition me in bed, and doesn't question me when I need extra pain medication. A combination of her, and my trusty Amazon Alexa's audio books make night time at least bearable for me. Then it's time to repeat!