Today is M.E. Awareness Day (though every day should be an awareness day). As well as this exactly two years ago today I moved into my very own bungalow. Over the past two years this bungalow has been turned into my home and my sanctuary. It has been adapted for my needs as well as being decorated to make it more ‘me’. I’m really excited to continually make more changes to my home and I’m so excited for what’s in store for my garden too.
I really still can’t believe I’ve made it two years. There was a point when I didn’t think I’d be able to live on my own. I definitely couldn’t have done the process without my housing support workers. However over time I’ve just found ways to make it work for me and I much prefer having my own home compared to living at my Dad’s. I do feel very fortunate to have my own home at my age as I know many people my age are still struggling to get their first home.
Living alone with Severe M.E. among other conditions however isn’t easy at all. I’m reliant in my care team of PA’s, carers and nurses as well as other professionals like my GP and the community physiotherapist and Occupational Therapist for my care. I often wish I didn’t need care but in the odd occasions when I’m left without care I realise how much I need my PA’s and carers. I think It’s especially hard being young(ish) and needing care too?
One of the hardest aspects I find about living with M.E. is the unpredictability. I never know if I’m going to have a good or bad or an in-between day and that can all change quite quickly. I can be fine sat doing an activity and suddenly I’m overwhelmed with exhaustion, pain, hypersensitivity, dysautonomia symptoms etc. and soon I’ve overdone it and I’ve gone boom and bust and I’m dealing with the payback. Or I might do something and experience Post Exertion Malaise, from which I might crash.
Crashes are when symptoms become significantly worse. They can last a day, a few days, a week, a month or even longer you never know you just have to take it step by step. Even when you aren’t crashed and you’re resting when you have Severe M.E my symptoms are still very much there.
I find resting doesn’t restore my energy, it just allows my body to just stop for a short while. I don’t even wake up feeling refreshed. People often associate M.E. with fatigue and while fatigue is a big symptom and a difficult one (I get tired of being tired) PEM is probably the more pressing symptom. After every activity I do I’ll experience some kind of PEM. This comes with a whole host of different symptoms but as the name suggests Post Exertion it really means the smallest exertion can trigger PEM. It can vary in severity like with crashes and you don’t know how bad the PEM will be, what symptoms you’ll experience, or how long it will last for. PEM can trigger a crash too.
Crashes or bad days are hard because I live alone as I might not be able to get pain relief until my carer arrives for example. I also can’t get up to fetch something I need. I have tried to set up my bed area as best I can to make it as easy as possible for when I’m in bed or for when I find I can’t get out of bed. I do also have my emergency CareLink and thankfully my Dad doesn’t live far away either.
I have lots of aids to help me be independent and to make tasks easier. For example I have my hydrate bottle that attaches to my bed with a long straw so I can drink hands free in case I find can’t lift a bottle. It also really helps now with my new wheelchair that I can use it to get around inside. I also have my Flexzi that goes on my bed rail so I can use my iPad hands free in any position when sat up or laid down when I’m in bed. Or my nible that helps me open things so easily. My aids literally help me so much in so many different ways and I have too many to list here!
I think I’ve just proven to myself that I can make living on my own work and I will have the inevitable wobbles. We all have our own life wobbles whether that be about out our career, or debt, or relationship issues etc, For me my wobble is my health.
There is always a solution. Like when I found I couldn’t manage the cleaning I employed a cleaner an extra costs like this are what my disability payments are there for to enable me to live my live and not struggle with the extra costs I have because of my disability.
I feel so proud of myself for how far I’ve come over the last few years. I’ve made living with chronic illnesses and disabilities work despite the challenges and wobbles.
I feel the word to describe my life living independently is thriving! I truly feel that I am thriving living on my own. I’ve gained so much more confidence in my ability to live independently despite the wobbles and many challenges I face daily. I’m still here, I’m finding ways to live here and I hope to live here for some time. - Mostly because the decor is so ‘me’ and because of the adaptations plus I’m just so happy living here too.
Resources
- Read more about M.E.
- ‘Severe M.E.: A Guide To Living’ by Emily Collingridge - a great book that I’d highly recommended
- Post Exertion Malaise
- ‘M.E. & Me’ - short documentary, BBC Three - definitely worth a watch
