Having started the day yet again lounging around in bed for over an hour beyond my alarm, watching dross on my phone, eating a healthy breakfast of chocolate and thin air… I thought I was good and ready to write this blog (cw: sarcasm, lol).
(Just before I get started – wear a mask, wash your hands, stay home if you can… the title of this blog is not related to the anti-masking movement. I have a top notch mask you can buy right here >>> Buy a ‘Melodeon Face’ Mask and support a small business)
Dear reader, I want you to know that I have thought about writing something like this for a few years now, and have shied away from it so many times. There is a very real danger of being thought of differently, of losing work, and tarnishing my good reputation by talking about the reality of my situation. So please, I ask you to read on with a kind, open heart. Because I’m not just speaking for myself here, but in harmony with the voices of others in the neuro-diverse community.
I rarely am able to communicate when I’m in low functioning mode. Please don’t take this as some sort of cry for help. I’m writing more out of desperation to ‘come clean’ about where I end up sometimes and why it might be that you don’t hear from me, or that you can’t get hold of me, or that I have to reschedule my work at the drop of a hat.
Is it an excuse just to be lazy?
This is a question I haven’t stopped asking myself for at least 8 years now. Going through anxiety and depression, and menstrual health issues, I’d regularly end up in a deep pit (every 4-6 weeks or so) and if it was a bad spell, wouldn’t be able to surface for weeks on end. Long-term readers will know that with the aid of hypnotherapy I was able to recover from anxiety and am pleased to report it is no longer the bain of my life! And I’ve just passed the 1 year anniversary of having the Mirena coil fitted and that has pretty much eliminated all monthly pain, cramps, nausea and dizziness! Hooray! That is some huge progress right there.
But… (because there’s always a but)…to my dismay, I still kept crashing and burning out.
Why can’t I just be fixed and normal and put all the weeks of the month to good use?!
My search for answers broadened out because damned was I to just sit back and accept it! I’m a busy business woman with lofty goals and dreams which require time and energy to bring into the world, and I’m losing weeks of my life to sofa + Netflix + cats (pretty much my favourite thing in the world – I could lounge for England).
But I don’t believe myself to be inherently lazy. I put too much effort into not looking lazy, to be called lazy. And I don’t like being lazy. But am I just looking for an appropriate excuse to cover up the fact I occasionally am lazy?! (You follow!?)
Why is this still happening to me?
I’ve blogged just recently about my suspected borderline Asperger’s/Autism Spectrum Condition (ASC). The brilliant thing from telling your own story is that other people will get in touch with you about theirs. Thank you to everyone who reached out to me back in November/December – and especially to a couple of you who told me about Attention Deficit Hyperactivity Disorder (ADHD, or just ADD).
At first I was like “but hang on, that’s what little boys that can’t sit still at school have!”
Whilst I’m still incredibly green to this topic, having only started reading up about it in December, I have found some great resources which explain that it does indeed exist in girls, women and adults but we’re better at masking it and so it can go undetected. Having just completed the initial assessment form in the last couple of weeks – it appears there is a pretty strong correlation between my behaviours, feelings and emotional reactions and a diagnosis of ADD.
Diagnosis dilemma = solved?
Having also completed the Autism Spectrum Quotient 50 (ASQ 50) questionnaire, which points to a borderline/Asperger’s diagnosis, I decided after much pondering that I wanted to pursue an official diagnosis. I had a telephone conversation with my GP last week and was so relieved to be heard and listened to. One of my biggest fears was that I would just be written off as a hypochondriac/diagnosis collector and that would be that. But he offered to research what the local adult assessment services are for both ASC and ADD and how long the wait time is for an appointment.
He got back to me yesterday morning. Here in South Derbyshire it’s a combined assessment, for which I’d have to wait three years for.
I was expecting half that time at most after conversations with friends who’d been through this. My original feeling was that I’d go private just because I’m ready to know. I’ve pondered for nearly 3 years now, and that’s been long enough for me! (Pretty sure this is an ADD/ASC trait… I just need the facts!).
I have some pointers here of where to get started, and when I have the spoons, I’ll get right on it.
Unmaksing – not for the faint hearted? Or just being myself?
I’m rambling and whilst I wanted to update you all on this next step in my journey, I also wanted to talk about low-functioning behaviour and taking the mask off. (You can catch up with other blogs on this topic here).
This last year, with having the carpet whipped from under my feet due to the COVID pandemic, and having spent the vast majority of my year at home in my own surroundings – I feel I’ve really been able to get to know the true, unmasked ‘me’.
There’s a true depth of personal honesty and identity that at times I’ve bathed in – often delightedly. To not have to socialise, to not have to leave the house, to not have to plan and pack a bag and fill the car up with fuel and work out when I’m home and when I’m not so I can make sure there’s food in, to not have to get a cat sitter, to not have to worry about where I’m staying over, where I’ll eat, how to be on time for an appointment… all of these things that used to rule my life immediately disappeared and I felt a sense of relief.
But as time has progressed, I have gotten more and more used to the unmasked me. Oddly, I’m really feeling a sense of grief for socialising – and on reflection I think that’s because I’m worried that I will have forgotten how to wear the mask – or, more truthfully, I just won’t want to.
I like being unmasked. It’s easy and effortless. I see people only to take in deliveries (which requires no mask), make small talk with my housemate (requires a small mask), and teach online (requires a bit bigger mask).
Each level of mask requires an increasing amount of energy to keep up. And that’s fine. I’ve been doing it all my life! It’s something you just learn to do – it’s a Pavlovian response which enables me to engage with people, events and things that matter to me in a meaningful way. When I have energy reserves to draw from, it’s easy. But what I’m finding more and more lately is that my batteries are permanently low any effort to re-charge them only has a limited effect.
“For a limited time only, get Mel at her almost, but not quite, best!”
This leaves me with an overwhelming and omnipresent sense of guilt and shame that frankly, I just can’t handle. I’m left in a precarious position because my good coping strategies (go for a walk, eat well, give someone a call etc.) all require energy to fulfil. No energy = bad coping strategies.
When I have no energy, it’s not just ‘feeling tried’. I feel leaden. The bones in my face are painful, my neck, back and shoulders ache, my joints can feel inflamed and sore. My movements are limited. Cognitive processing impaired. I believe this is called a flare up by those who have chronic illnesses such as fibromyalgia and chronic fatigue syndrome/ME.
Learning to take better care of myself
Having grown up around this type of illness (when my Mum was ill with ME in my teens), and seeing just how debilitating it can be, I have always wondered whether I could be susceptible to something like this. It can happen to anyone and usually involves a combination of continually pushing through illnesses with a ‘keep on keeping on’ attitude and – crucially – not listening to your body when it’s screaming at you to rest and recuperate. (This is in part why I low-key have an issue with the “stay strong” phrase/mentality).
I was lucky. Whilst I saw my Mum at her worst – the days/weeks/months she couldn’t leave her bed – I also witnessed how an absolute warrior completely rearranged her entire approach to life and her career in order to make a full recovery. It changed us as a family for the better and Mum has lived by the same mantra ever since – she does a bit and then she rests. Sometimes she over does it, so she has to rest a bit more.
“Rest is Best!”
Rightly or wrongly, I’ve come to think of my ASC/ADD as a chronic illness and my Mum’s mantra has also become my mantra.
For me it also comes at times with an enormous sense of guilt. Guilt that I’m not doing the things I need to do in order to properly take care of myself, my house, my relationships, my business.
Sometimes, I have to reschedule 121 lessons at short notice. Sometimes I am rescheduling more than I’m teaching. I feel guilty about letting people down – particularly at a time when I know how important musical engagement is for people. I want to be there as much as I can to help people and support them, but the more effort I put in to get in that headspace, the more and more I’m unable to. This sole issue frustrates me beyond belief and I want to apologise to those who it’s affecting.
Acceptance feels impossible
I’m not the sort of person who accepts failure – and yet that’s what it feels like. Every. Single. Time.
Weirdly though, as I’ve moved closer towards accepting my likely ASC/ADD, just knowing that has helped relieve so much pressure from myself. My inner perfectionist can swivel! This is why I think knowing for sure with an official diagnosis will give me a full sense of release, and enable me to fully accept myself.
A diagnosis isn’t going to magically ‘cure’ me – of course I know that. There isn’t anything that can make the guilt go away except accepting the situation – accepting that I just need to rest and take time. I accept that, when I am low-functioning, I must do the bare minimum and that works well for me, but sometimes even that is too much, and that’s OK too. (Psst, Mel: re-read this ad nauseum).
If I can get by like this, I will soon return to a more high-functioning state. And then it’s about balancing the yo-yo effect of being a high achiever, feeling great about life and everything … and then BOOM crashing out again because I overdid it. Striking that balance is really hard – but this I hear is the reality of so many with ADD!
Light at the end of the tunnel?
In lockdown 3, which feels like the longest yet, I’m noticing this cyclical burn out/meltdown/crash (I haven’t been able to find a catch-all phrase for it yet – suggestions welcome!!) is becoming more frequent. I’m needing more low-functioning time to myself as it appears often the simplest tasks are resulting in me becoming completely overwhelmed and exhausted. I appear to be only able to complete jigsaws and get on first name terms with the Domino’s delivery driver!
Whilst the sorting, ordering, and pattern matching of the jigsaws, and eating the same foods over and over again REALLY appeal to my ASC/ADD brain and gives me a sense of calm control in a global crisis situation where I have very little, I know that avoiding work and eating junk food is only going to make me feel worse in the longterm. But there it is – cycles upon cycles… the ugly truth of it all.
On a positive note (which you all know I love!) I have used some battery life to make a freezer stash of delicious, easy homemade curries and pastas which, when I can be bovverd to microwave them, are helping to break this unhelpful chain. I’m finding offline work and admin fits in around nap times and I’m designing some new online courses and getting my head around the tech. I’m continuing to teach my online classes and finding a great joy in connecting with people in an engaging yet less intensive way.
If you’ve got any great TV recommendations, hit me up in the comments! #SharingIsCaring (unless you’ve tested positive)
PS re: weighted blankets…
People keep telling me to get one – so I did, but I find I need more and more weight! I end up with it in one large mound on top of my torso! That’s 9kg… on my chest… and I still feel the tight knot in my solar plexus. I’m looking at buying a bigger heavier one, but they’re not cheap so the jury is out on that for me at the moment. Am I doing weighted blankets wrong?! HALP!