After smugly thinking, "my pain is actually manageable this week", life came and kicked me in the butt again and I have been awake since 5am in the most horrid neuro pain.
Thankfully Super Dad a.k.a. My awesome husband (and he really is... see associated piccies as proof and to simply make you smile! It may just be because they are my tiny humans and my amazing best friend/hubby, but I think they're pretty smile inducing, but I am biased of course!); who today has taken both monkeys off to the arts club at the village hall- yep, I really did move to Dibley didn't I!
I am so thankful to God that my amazing husband was here to save me today, but what about when he isn't?
I try not to let these worries consume me, but as my tiniest human has decided that he can now not only crawl at a great pace, but also climb and furniture cruise, but unfortunately is yet to master the skill of falling forwards and not backwards on his head- I am feeling well and truly outnumbered and a little overwhelmed.
I have the most wonderful friends and family and neighbours (despite having only lived here a matter of months- did I mention the Dibley thing!), but as September and it's associated real-life-isms fast approach, I worry that I may have to finally accept the Council's Adult Services' offers of panic buttons, more mobility aids and people in my home.
Not to party, drink wine, (or coffee? Interesting and a little telling I went straight for the wine!!), or even partake in intellectual debate with me; but to care for me and provide physical support.
The thought of which makes me want to vomit.
Having entered the strange old world of acquiring a disability, or special ability or whatever term you want to use to best attempt to be p.c., (and there are many, for many different reasons, but that's a whole different post!), at only 23 years old, I have fought to avoid as many glaring reminders of my issues in my home and in my daily life as possible.
I have rightly or wrongly relied where I can on family and friends as opposed to carers, (although in hindsight I realise that this may have been a rather naive and selfish decision).
I have walking sticks in pink, blue and charcoal grey patterns and I have The Daddy of all electric wheelchairs affectionately known amongst family and friends as 'The Beast' for its ability to take on off road dog walks and provide entertainment in the form of dancing and obstacle courses on rare cocktail fuelled nights out!
I have walking sticks in pink, blue and charcoal grey patterns and I have The Daddy of all electric wheelchairs affectionately known amongst family and friends as 'The Beast' for its ability to take on off road dog walks and provide entertainment in the form of dancing and obstacle courses on rare cocktail fuelled nights out!
I realise that as someone who has started a charity to help people accept and embrace their disability following a life changing illness or injury, that I should practise what I preach and accept my disability aids and carers with good grace, but I'm human and when I'm in pain I can be a difficult human, one that gets frustrated that I'm not going to the gym or for runs or the swimming pool or park with my kids like my other friends- one that gets niggled by the most innocuous habits of my husband, mum and any other poor, unsuspecting human who is unfortunate enough to be around me when I am trying to cope on my reduction of pain medication because I am fed up of being a zombie slave to the morphine and other neuro opiates that have ruled my life for the majority of the last decade, and one that simply bloody hates not being 'normal' sometimes! (In the ability/disability stakes particularly that is. The crazy, clumsy, weirdo stakes I will take and embrace and hold dearly to my heart as my own!)
I'm a parent now and I have to 'adult' on a daily basis. I do so love this new social media created/embraced verb, it does just so perfectly describe what I have to do but desperately want to avoid doing with all my might.
With that in mind, I have accepted that I have to use my electric wheelchair more.
I've accepted the big plastic lift we have reluctantly had to cut into the beams to fit into our cottage built in 1801 and now I am beginning to finally accept that now I have two monkeys and am outnumbered by them and their delicious yet devious little ways, that I may need the bloomin' panic buttons and the bloomin' carers.
It's not about me, it's about them now and that is simply the reality of being a parent. Their needs have to come first.
That's what makes this in my view, the hardest job in the world.
What decisions you have to make you procrastinate about and whatever decisions you make you have sleepless nights that you made the right decisions for them, from everything from what they eat, to how you teach them to use a flipping toilet!
They are like little dictators in your home, demanding feeding and entertaining on demand, whilst simultaneously stripping you of the freedom of feeding and hydrating yourself when and with what you want to, (whole days have gone by since becoming a mum, particularly of two, when my nutritional input has consisted solely of stale crackers and cold tea, followed by some succulent toddler left overs!), and the ability to hold a conversation without referring it back to Peppa Pig or Paw Patrol!
Despite this, I simply lose my mind when I am not with them and spend any rare solo hours tapping the home screen of my iPhone, not only to check that all is well and that my husband and/or mother are surviving their mischievous little ways, but also to see their faces.
And that's where I am right now.
Confined to my bed writing to you, whilst intermittently flicking back to look at their piccies!
Only one hour and forty minutes ago I was longing for this solitude, not only for my sanity after having conversations about poo poo and princesses since 5.25am, but because three year olds and seven month olds have no concept of neuro pain and how giving mummy a cuddle (which admittedly could also be misconstrued as mountaineering training mixed with mixed martial arts), can be incredibly painful resulting in Mummy's patience being 'limited' to say the least.
I don't like that Mummy/me.
In fact I despise her, which is why I asked Garry to take them out so she could sort her damn self out and get a grip.
She is not the patient, hippie, attachment parenting following, Christian I strive to be- she is everything I avoid; but in reality she is reluctantly a bi-product of my chronic pain and frustration and my disability, (and also simply being a parent!), which is maybe why I should accept the help before my hand is forced to do so.
Before they get back, I'm going to take a minute to meditate through my pain now and read my Diamonds in the Dust, a daily devotional written by Joni Eareckson Tada, an incredible human who was paralysed as a teenager following a diving accident, yet still holds the most incredible faith and positive outlook on life.
The thing I love the most about her books and her spirit though- she's honest, and talks about her own frustrations and short temper with nurses, family and friends.
We're all human, we all make mistakes and do/say we're not proud of and we're also all a little bit like my three year old sometimes and when life is tough our emotions can be too much and simply get the better of us and we do or say things we don't mean.
Maybe I should take head of my own words to my daughter and remember that as long as we learn from the 'not-so-good things' and try to do better the next time, everything is OK.
Life is ok.
Life is ok.
In fact despite the hiccups like this morning, my life is better than OK because of these three two legged monkeys and one four legged monkey!
* This post was written on Monday morning and despite having a couple of improved days in the middle of the week, the 'working week', (not that there is such a thing as 'days off' when you have children under three and under!), has ended much the same.
I am currently stuck in bed. My amazing neighbour and friend has had the children and then passed them on to my bloody amazing husband.
I remain here feeling very useless and very much like a burden to those around me.
I'm sure those of you who have or do live with illness, injury or disability can relate.
Sometimes there is one hell of a lot of guilt. Add that guilt on to the natural 'Mummy Guilt' all of these 'Parenting blogs' and articles talk of and that is a hell of a cocktail for feeling pretty rotten.
I'm sure I will feel better in the morning in both the physical and emotional sense.
Those monkeys are better than a million bottles of liquid morphine- although they do make you just as sleepy!
* Please excuse the grammar and composition of this piece and even the fact I have used the term 'normal', something I usually hate. These are my raw emotions whilst riddled with pain. The 'normal' I speak of is the fully working physical body I once knew and rightly or wrongly long for on days when it all gets too much. x x
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