The reality is not far off 😄….
What do you do to recharge your batteries? Let me know and I’ll quote you in my next post!
The reality is not far off 😄….
What do you do to recharge your batteries? Let me know and I’ll quote you in my next post!
I’ve been a lazy bunny by not getting up until 1.00pm because I’ve been enjoying the comfort of staying in a real bed again, for as many hours as I choose (long story). The down side of that is getting woken by glorious sunshine but by the time I get up washed and dressed, it’s buggered of behind thick cloud for the rest of the day. That has not helped my mental health or motivation…I swear I’m some kind of emotional weather vane! Anyone else?
List of my self care feck up’s and victories
Bad – Not getting up until pm
Good – Been flying through the novel Mirror Mirror
Bad – At around midnight I realised I was so hungry but the simple burrito I was meant to warm in the microwave collapsed into a soggy mess, I then salvaged it and promptly dropped half onto the floor
Real low – I then sobbed over it (literally), while I cleaned bits of it up and then ate the other half. At least my tears added some well needed salt. I then started bargaining with a God I don’t even believe in to make my Dyspraxia and chronic fatigue easier. Although, to be fair, I had just watched Bruce Almighty. The voice of Morgan Freeman did not reply.
Good – I’ve been keeping up with my skincare routine everyday
Bad – I’ve been abandoning my hydration flask and glasses in random places around the house and then feeling constantly dehydrated. Ironically, this is probably why my memory of where I’ve put stuff has been so crap.
Good – Did shopping with specific meals in mind so everything works with everything else for once.
Bad – Forgot to prepare food to eat for when I’m tired and hungry, then left it too late to be able to cook anything, so had to order takeaway again as very wobbly.
Good – It was a healthy one, with veg curry, avocado sushi and an edamame and spinach salad.
Bad – The next day I forgot that English mustard is much hotter than the squirty American stuff and practically buttered my bread with it!
Good – I’m getting better at keeping track of time and/or setting alarms for things
Bad – Ended up wearing PJ’s two days straight as all of my chillin clothes were in the wash basket and I repeatedly forgot two wash them.
Good – Washed clothes
Bad – Forgot the damn washer had stopped and left the clothes to crease to oblivion for an hour. Had to do another quick wash to sort them out – sigh.
Good – Had a shower and washed my hair, did body and hair care.
Good – Been well on top of my blogging and reading other peoples.
Bad – Having a nightmare with getting on the housing register properly. Every person I’ve spoken to on the phone (as I’ve had total silence from them since July and I’ve noticed several big mistakes) hasn’t had a clue what’s going on. I’ve heard “Oh, that’s odd!?” about four times now. They keep making notes and saying someone will phone me to explain the confusion.
Hmmm – Their medical assessment team will be arranging a visit ‘soon’ apparently….
Good – Finished having a huge clear out. Finished buying new stuff to replace old/unsuitable stuff and am now saving to move into a suitable flat of my own, finally!
Use post it notes more often.
Get up before 11.00am.
Plan evening meal and make it/eat it earlier.
Keep up with washing and styling hair, when I have the energy.
These items are the reason I wake up feeling and looking refreshed, rather than trashed. I’m thinking this will come in handy for people who like to have a drink over the weekend too.
Beauty Kitchen Products – Oil
They are an independent UK company who try to be as sustainable and natural as possible. This oil is wonderful for taking makeup off with, to give the face a quick massage with and to nourish skin. No more waking up looking like a dried up Mummy, with curiously puffy eye bags.
Before I go to sleep I watch an episode of 90210, Lucifer or You Tube makeup tutorials by Wayne Goss, with the screen dimmed. If my eyes aren’t too tired I’ll read a character driven novel. Anything that’s interesting but not taxing.
I always find I need salty food to soak up the sugary alcohol I’ve had. It also means I don’t wake up starving but too tired to make breakfast/lunch. I find the crunching really relaxing as i carry a lot of tension in my jaw.
Oil Based Lip Balm
Skin needs both oil and moisturiser so I apply this before it’s needed. I’m such a mouth breather at night XoD
How do people sleep without their hair tied back, how!? When I do that, it wraps around me like a Face-hugger from Alien and then I wake up with it looking like statically charged spaghetti.
HYDRATE! (Waiting for my new flask to arrive)
I always have weak, sugar free cordial (water just goes straight through me) to sip before I go to sleep, throughout the night and before I get up in the morning. This stops me feeling shite, keeps my skin clear and reduces eye bags and ‘desert mouth.’
Before I started this routine I used to wake up with a really flushed face, crazy hair, bloating, bone-dry skin and feel more tired than when I went to bed! This has made a significant difference to my morning chronic fatigue and mental health; most days I’ll happily get up at 11.00am, rather than dragging my sorry arse out of bed at 1.00-2.00pm like I used to.
When you have repeatedly explained your disability, symptoms and needs to someone, in every way you can think of and they still aren’t getting it.
I know it’s tempting to want to strangle them or head butt the desk repeatedly or scream – actually screaming into a pillow is very therapeutic – but eventually you will have to accept it and let it go for the sake of your mental health.
Not everyone’s empathy works in the same way. Some people will instantly get it (whether they have experienced it or not) simply by listening and taking the info on board. Some people need to have experienced something similar for themselves so they literally know what you mean. Others, because it is different to their experiences will never, ever be fully onboard. Even if you have gone through something and they were witnessing it, they still won’t have learned from that past experience.
Now, that’s not to say they don’t care and don’t want to understand. It is entirely possible for a person to sympathise, yet manage to say or do something ignorant and tactless purely by mistake.
I guess what I’m saying is don’t take it personally and don’t beat your head against a brick wall (metaphorically I mean) by thinking you can change someone like that and enlighten them. Some people are all ready at their maximum capacity for understanding and empathising.
Essentially at that point, it is up to them to get their own head around what you need and how you function. I’ve arrived at the conclusions at the start of this post. Trying to make someone understand, isn’t always worth your mental health or your relationship with them deteriorating. If they obviously care about you, sometimes you just have to accept that no matter how much they try, maybe they never will really get it and you have to be cool with that.
I thought I always felt anxious just because of life. From being a kid to a teen I was dealing with everyday racism; a family member with mental health probs where I’d get blamed for ‘setting them off’ to point where it was actually enabling them; it not being acknowledged by teachers or Drs that I had learning differences and was Neurodiverse; my Dyspraxia and Hypermobilty Syndrome were undiagnosed and symptoms ignored even after multiple GP visits; I totally failed both A-levels, because of other people’s errors/and then a huge chunk of my hard work work getting lost.
As an adult, when I’d go clubbing I’d either get totally ignored by blokes (even shoved out of the way) or they’d bluntly pursue me for one thing only. Such a head-fuck! In my second job a group of people who I thought were my friends were secretly excluding me from nights out and taking the piss behind my back for a year. Then in my very next job it happened all over again with three other ‘friends’ who, after six months started trying to manipulate and lie to me, like it was a game. I didn’t trust my own judgment or perspective on anything for several years afterward.
I’d managed to cope with the anxious feelings by talking to (actual) friends and doing lots of fun stuff (everything to the extreme) and pretending all of this was just average daily life. I was ignoring that many things were way more difficult for me to navigate than my friends, for so many reasons I couldn’t understand and that I really wasn’t ‘fine’. Not remotely. When I got overly emotional I blamed the beer I’d drank or that I was over tired. Then, when I finally got diagnosed with several chronic illnesses I was obviously relieved but understandably anxious too.
Basically, I thought it’s not the mental illness ‘Anxiety’ if I’ve always got a reason to feel anxious right? Wrong!
Now, for the past few months the fact I have and have always had anxiety has become so obvious to me, that I can’t ignore it anymore. I was so busy coping with other shit going on, oddly enough, the importance of my mental health got shuffled to the back of my mind. I’ve been having the same two upsetting dreams about being left behind or ignored; I’m stewing on negative thoughts that I can’t shake and over-thinking people’s actions; lately I’ve had a constant wobbly feeling in my tummy that either ruins my appetite or has me running to the loo because the food has flown right through me.
I realise this current anxiety is down to several situations that have all collided at once. It’s wildly skewing my perspective, making me needy and fearful and even effecting my decision making and actions. One of those things was being unable to bear going through five hours of being on my own with my wildly see-sawing thoughts, no matter how much I distracted my self with manicures, makeovers, films and ice cream, they’d creep back. It resulted in me (at least once a day) phoning and/or texting the one person I was meant to be giving a little space to, and yet somehow, never mentioning my anxiety to them. Not once.
Hopefully now I’ve recognised all of this and having talked some of it through with that person, the anxiety will calm down a lot. They were patient and surprisingly empathetic. It turns out that they’ve had anxiety for years, over-thinking and worrying about me! Since the talk, I’ve already stopped having the dreams so that’s a lot less mentally exhausting. I also feel very relieved, although still a little uncertain. They’ve also said it’s a weight off their chest, just saying it out loud.
There are still some incredibly important things up in the air but only time – rather than numerous phone calls – will reveal how those will work out, so I’ll just have to wait. Gosh, I’m crap at waiting….
Pretty much every Physio I’ve seen has taken into account my little noodle arms, my easily misplaced balance and chronic fatigue and suggested I exercise with a resistance band. So when Care Co – who sell discount mobility aids – asked me to try out an item, that’s what I chose.
What is it?
The Exercise Band (£10) helps you to improve your muscles, fitness, control and co-ordination. You use it’s resistance and your own existing strength to build up more strength. This one smells strongly of latex and is a lovely teal colour. It has numbered positions on it to show you where to place your hands so you can increase the difficulty as you get past the first month.
How and Why?
The booklet contains a four week plan of six different exercises per week. It describes them with easy to follow instructions and illustrations (I’m not great at following instructions thanks to be Dyspraxic but I found this really simple) and also information on diet, general exercise tips and mental health tips, which I all found useful.
I have Hypermobity Syndrome meaning my soft tissue, muscles and joints are too stretchy, flexible and weak so I’d have really preferred the band had a loop on each end to help me hold it better (the booklet does mention consulting your GP if you have joint problems, right at the start). It does have enough room to wrap it around your hands though, if you don’t mind them getting squished, which I didn’t. However, I did need to wear wrist supports when using this.
I really enjoyed working my way through this plan and, I’m not going to lie, the novelty of this weird rubber band. It felt more like I was having fun rather than exercising but I also loved how structured the plan was as I have zero attention span and sporadic motivation, at best.
The Shoulder Press totally defeated me however, as I just didn’t have the strength in weak two or three or four to stretch the band over my head. I actually lost my grip at one point and smacked myself in the jaw! Hardly the first time that I’ve done this over the years btw. My Dad tried it, who stays fairly fit for a bloke in his Seventies and he got it to his jaw, the same as me. My bloke tried it who’s 6’2″ and 16 stone and succeeded immediately. So it is possible!
Can a giant rubber band really make a difference?
I didn’t have the energy to use this everyday but it certainly encouraged me to use it when I did have some. I’ve gotten better at the exercises with practice and my balance and co-ordination have noticeably improved – a big deal for someone with Hypermobilty Syndrome and Dyspraxia (which also effects co-ordination). I also noticed that in just four weeks my muscles adapted to the new kinds of movements.
My lower back was not happy at first but I realised it was because it was already incredibly tense from holding up my slightly floppy spine all day. A massage relaxed the muscles and I’d say the exercises will continue to make my core stronger in the future.
The band immediately highlights your strengths and weaknesses so, if like me, you have chronic fatigue and have to pace your workouts, you could just focus more on the areas that need improvement and reduce the amount you do in just four weeks with the areas that don’t need it as much.
Overall I found the Care Co exercise band to be fun, incredibly versatile, confidence building, easily transportable and storable but more importantly, something that gives me a reason to exercise, rather than an excuse not to.
I know posting a diagram showing the problems which dyspraxia can cause might seem counter intuitive to the tittle of this post but I think it’s the easiest way to show you what dyspraxia actually is. Personally, I have less problems with fine motor skills and more severe problems with attention, memory, sensory issues and general spacial awareness Neurologists tell me.
Before I knew what was going on with me I felt like a big dumb freak but my school friends always said “We love you because of the that you are, not despite it.” My boyfriend says the exact same thing to me. I’ve got much more confidence now and because I’ve been diagnosed later in life it’s meant I’ve had to develop my own coping strategies and I’ve started to realise that dyspraxia has shaped me in positive ways.
Creativity and a random jukebox in my mind
As my brain is always whirring around with random thoughts – especially at night – I can get really creative ideas and little revelations about life. If you follow me on Twitter you will be able to attest to this! It has also meant that I’ve never run out blog post ideas once, in the 2 and a half years that I’ve been blogging. Everyday I have a line or the chorus of a song going around my head in a loop for frequent periods. I’m reminded of some great songs from passed decades I’d forgotten about or had no idea I even knew the words to!
‘If you fail try, try and try again’ or in my case ‘and again and again…..’ this can be seriously tedious but having to persevere has made me really tenacious. Even as a child I was a really determined little thing who wasn’t easily defeated… or stubborn at all ;o)
Humour in the face of adversity
If I’m in a shitty situation I will some how manage to find humour in it. Failing at hundreds of little things everyday since childhood I’ve experienced a lot of flippant negativity. This could have made me an overly defensive, bitter bitch but I chose to have fun with a self-effacing sense of humour instead. I don’t mean I’m putting myself down constantly to get laughs, I just manage to find humour in dodgy situations. Rather than getting embarrassed after opening a packet of M&M’s in such a way they fly all over the place, I’ll make a joke like “I just thought I’d share them with EVERYONE!” Having an unrestrained imagination helps to turn the mundane into the ridiculous and therefor amusing very quickly. Anyone else made themselves laugh out loud at their own thoughts, when on a crowded bus?
I can be surprisingly focussed
I’m used to coping with difficult situations. Having dyspraxia means that I need to pause before steaming into something and instead I need to figure out a way to do it, that works for me. I’m constantly accessing situations. I’ve realised this has made me a lot more ‘on the ball’ over the years. For instance travelling to London and finding my connecting train to Cornwall in an incredibly busy station didn’t phase me. Wandering around a maze like hospital didn’t phase me. I got utterly lost like, and went around in a circle – twice – but I didn’t get stressed. Being in situations where things aren’t instantly and entirely evident to me is pretty normal. Confusing yes, but somehow reassuringly normal and not as stressful as it might be to someone who isn’t used to feeling this way. Also if someone has an accident I can suddenly become detached enough to think practically rather than panic, which is always good.
Breath and relax…
I’ve learned a level of patience I never thought possible. Loosing my train of thought right near the end of a sentence or a sum, tripping up over nothing, spending ages making a simple but perfect meal only to drop the plate face down on the floor, all of these things have and continue to test my patience but my gosh, have I developed A LOT of it! When spoilt princesses (the grown up kind) are having a full on diva fit because they didn’t get served at warp speed, I just roll my eyes. When someone is running late and everything seems to be going wrong I can calm them down, offer them a cuppa or a cocktail and say something daft to make them laugh because I understand exactly how that feels. I’ll admit sometimes you might here me yell “For f#c% sake!” and launch an object across the room but then I’m usually calm immediately after my therapeutic mini meltdown.
I’m always organised
I rule at being organised. Ok so I’ve missed many appointments because I’ve got the order of the numbers in the date mixed up or lost all track of time because I’m hyper-focussed on Grand Theft Auto. These experiences and many more have taught me that Post It notes, reminder alarms (on my laptop, phone, iPod and paper calendar),
nagging reminders from my boyfriend and Mum, simple but detailed filing systems and adorable stationary are essential.
I tend to think differently than others and sometimes I can easily solve a problem which others have been struggling with, because it just seems obvious to me. Kind of like when an adult is over complicating something and being governed by the rules of how something is meant to be done, then their child looks rather non-plussed and suggests “Why don’t you just do it like this?” I’m sorry I can’t think of any specific examples here, every time I try to think of any, they opaquely half form and then float out of my head! That’s the nature of dyspraxia and I don’t mind about my mind ;o)
Weeding out the dickheads
When you are a bit of a weirdo as I am – and I mean that affectionately – it doesn’t take long to realise who your friends are. They are the ones who don’t judge, don’t constantly make ‘jokes’ at your expense, who try to help without being patronising. Who don’t try to finish your sentences because you are apparently taking too long or simply talk over you as if you are a toddler or hard of understanding.
I’m tidier than a maid
Everything I own has it’s own place where it lives and it always gets put back there almost as soon as I’ve used it. When you put something down and forget why it’s not in your hand 30 seconds later, things need to be ordered so you can find it again. When you can scan a room four or five times for something that’s in plain site and still not see it, things need to be kept tidy. Floor space needs to be free from clutter so that I don’t trip over the stuff I’ve left there. I do hate homes that are so sparse and neat they don’t feel homely and I don’t have a compulsion to tidy, I’ve just learned how to make my space work for me.
People know where they stand with me
I’m honest to a fault. In my twenties as a temp I was so terrified of offending candidates for the position of ‘new BFF’ I over thought everything before I spoke and I mean EVERYTHING. It was exhausting and when the words did finally come out they sounded awkward and rehearsed. Nowadays I trust I’m not a total idiot or a big ol’ bitch and I just go with my instincts and “blah blah blah” away freely to everyone. Sometimes I sound a bit dumb, sometimes I’m really quick and witty, sometimes I’m a little tactless but it’s better than being anxious and paranoid. Plus 70% of people I meet tend to really respect my honesty and the other….er…..30% just need to lighten up a little, hehe!
I hope this gives people an insight into this hidden disability in general (recognised in the 1990’s) or that it helps anyone who recognises some of the symptoms, diagnosed or otherwise.
Your comments welcome as always :o)
I have what is referred to as an ‘invisible disability’ because Dyspraxia is part sensory, part co-ordination and part comprehension/attention/memory related, it’s not always an obvious physical thing. Invisible Disabilities have their own problems when it comes to mingling with the general pubic (yes, I know). I’m going to list them because I like lists!
Lazy But Frequent Assumptions People Make About You
Talk About Your Condition/Disability! Tell people!
Don’t stop strangers in the street and regale them with details of your latest Dr’s visit like, but do get a dialogue going with people you are going to be spending a lot of time with.
In hindsight I would have found it so much easier in every college, every job and every new circle of friends I’ve made, if I’d have just had ‘the talk’ with them. Alright, back then I had no understanding of why I struggled so much but I knew which things I struggled with.
Yeah, I know it shouldn’t be up to the disabled person to set the standard and to feel like they have to justify their actions but explaining them might possibly make it easier for said person in the long term. Your disability shouldn’t be something you are ashamed of either.
Why Covering For Your Disability Won’t Always Work
I did an Office Administrator apprenticeship in my 20’s where I wasn’t much older than most of my colleagues kids. They noticed straight away that I wasn’t coping very well but everyone was lovely and they all really helped me. After a year the apprenticeship was over and I had to find a new job.
I fell in with a group of people that had started a month earlier and had bonded with each other quickly. After 6 months I still felt a little like I was ‘the new girl settling in’ and had an uneasy feeling I hadn’t meshed quite right with them. I automatically assumed it was down to my wonky social skills. Other people in the office had previously dropped subtle hints to me about ‘knowing who your friends are’ etc. but subtlety isn’t my strong point and anyway, these people were doing just enough to con me into thinking they genuinely were my friends. I think that they knew I was (intentionally) hiding something from them and something wasn’t quite right, so they all thought it gave them the right to treat me like shit. I ended up leaving because of it, with no other prospect of employment on the horizon but that’s not the point. They were a bunch of knobs, obviously, but that’s not the point either….
Accept It And Own It!
The point is, I was trying to hide my condition in plane sight and failing miserably. One minute I was chatting a mile a minute and the next I was being evasive and not making eye contact. Fine not fine. Basically I was really embarrassed by my ‘weirdness’ and was bright enough to quickly be able to come up with a vaguely plausible excuse for every symptom, while t the same time feeling really rather stupid. We need to remember we aren’t wrong or broken, we just function differently. We shouldn’t be making excuses for being who we are or acting the way that we do regarding being different.Every single person on the planet has things they are good at and things they are crap at. The only difference with us is that we are more determined to give the things we know we’ll struggle with, a try in the first place.
If people notice you are acting or doing something that’s a little different don’t try to hide it, or make excuses for it. People will see through you and wonder what on earth is going on. If you continue to behave like that, it’s pretty obvious people are going to get tired or even annoyed. It’s not fair I know but there you go. Either find a quiet time to have a casual chat or wait until someone brings it up and then just be open and honest with them about it.
Even if you only make your lecturer/manager aware so that they can make ‘reasonable adjustments’ to help you cope. For instance, amassing angrier and angrier warnings from your boss for being late, when you struggle with time management and planning might actually be avoidable! Maybe you could start and finish slightly earlier/later to avoid rush hour?
What To Say About Your Disability or Condition
Maybe talk about specific things you struggle with, if you’ve been diagnosed with a certain thing or the reason why that condition effects you (if you are lucky enough to know) or how long you’ve had it. Go into as much or as little detail as you want but try to keep your sense of humour. At the very least it gives people a better understanding of you, and why shouldn’t they!
Admit If You Need Help WithA Task
I know with invisible disabilities it’s possible a person can keep on scraping by and covering up their mistakes or their needs but that knotted stomach feeling of dread can lead to anxiety and depression. It’s much better to ask for help or clearer guidance from your teacher/lecturer/manager/colleagues/friends from the start, even if that help is just a little more patience or understanding from them. Absolutely everyone needs help sometimes so if you are really really struggling with a task don’t feel embarrassed to ask for some!
Being more open about it might make you feel vulnerable at first but as I’ve learned, hiding it can make you just as vulnerable. They are some awesome people out there with more empathy and understanding than you might first realise.
The more people talk about disabilities, the more people get to hear about them and gain a greater understanding of them :o)
I’m going off when my body and energy levels are on good form because I’m trying to be nice to myself these days ^_^
❤ Chrissie ❤
Note: Incase you wondering, the conditions I have are Demyelination (similar to but not actually MS), Dyspraxia, Aspergers, Sensory Processing Disorder (relating to the latter three conditions), allergies, PCOS (suspected by GP), Hyperthyroidism, Hypermobilty Syndrome (including food intolerance), which can all have the symptoms of chronic fatigue/brain fog in common.