As I described in my first blog post, I explained how I used to be full of energy. I used to be able to walk for miles at a time, not thinking twice about just popping down to the shops to meet a friend for coffee. My maternity leave was spent between buggy fit classes, baby sensory classes and music classes, walking between each one.
Of course I was tired (everyone is with a baby!) but a good rest sorted me out each time, ready to start a new day.
However last winter, I caught several chest infections, one after another. Each infection sent my asthma haywire. I ended up an inpatient on a respiratory ward before Christmas as the asthma was so out of control.
I haven’t recovered since.
Granted, I can now breathe properly, speak in full sentences (something one can’t do in an asthma attack) and am not on endless antibiotics and steroid tablets, but my energy levels have never returned to what they were before.
Being diagnosed with M.E./CFS (myalgic encephalomyelitis or chronic fatigue syndrome) was the turning point for me. I could start moving forward (metaphorically) in gaining greater control of my day to day life.
Since being diagnosed I have invested in mobility aids to help me get around. It is well documented that pushing yourself beyond one’s limits with M.E. is a recipe for disaster. You can’t just exercise your way out of M.E.
I didn’t want to end up housebound, or even bed-bound, and I wanted to have some form of independence. I wanted to be able to take our daughter out and about and enjoy my time with her rather than having to parent through the wonders of Mr Tumble and other CBeebies characters all day long.
I realised only a few months ago that this meant I was now technically disabled. How did I feel about this? It was hard to know at the time.
The word “disabled” is such a loaded term.
While society has come a long way in terms of history, unfortunately “being disabled” is still not something that people are comfortable with. Many people are not comfortable “admitting” to being disabled. It is seen as meaning you are somehow less productive, less skilful than an able-bodied person.
But yet the meaning of the word disabled covers an awful lot more people than one would think.
According to the Equality Act 2010, being disabled means:
you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.Equality Act, 2010
Yes of course by the very nature of the definition, being disabled means you find it difficult to do certain things that able-bodied people can do. I’m not going to lie to anyone, living with M.E. alongside other chronic conditions, is not easy.
But what favours am I doing myself if I deny that this is a disability? What favours am I doing by trying to push through and pretend I’m as able bodied as before?
Disability is not shameful. It is not something to be ashamed of.
Disability is not shameful. It is not something to be ashamed of.Click to Tweet
We live in a society where achievement and “doing” is rewarded. We forget that we are human beings, not human doings. This subtle awareness makes us live in this constant go-go-go format. That can’t be healthy for anyone surely?
Being disabled has given me a whole new lease of life. (Ironic seeing as I have to lie down to rest twice a day!) It has opened my eyes to the wonders of the world and to the joy that one can experience from the smallest of things.
I can stand up for myself that I couldn’t do before. I know when to say no when my body does not feel it can do something. I can ask for help that I would have been too stubbornly proud to do before.
Yes of course things are not easy.
I need help with travelling on public transport. But that’s ok! The help is available, why not use it!
I use mobility aids, with each one having a different purpose. The manual wheelchair, crutches and rollator are all amazing but require planning. I hire mobility scooters when going out shopping to be able to enjoy the experience and not collapse in exhaustion.
But this is me now. This is who I am. People ask me “when is it going to get better?” A perfectly valid question but one that I just don’t know the answer to. And I point blank refuse to sit and wait until that moment comes. I refuse to sign up to the “I’ll be happy when…” phrase as if I need to be miserable until I get better. I’m so lucky to be alive, to have a wonderful family and friends, and to have the ability to get out and about, albeit with some assistance. Why be ashamed of that?
This is me. I’m disabled and I’m not ashamed of it.
This is me. I’m disabled and I’m not ashamed of it.Click to Tweet
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