-I’ve taken the most basic of things for granted, like the ability to just ‘pop out’.
-I really miss people, I miss just being able to grab a coffee, have a chat and actually HUG friends.
-I’ve not made enough of an effort to see people pre pandemic (who I’m missing terribly right now).
-I’m actually pretty comfortable with my own company, but need to be careful not to completely retreat into myself.
-Home is my safe, happy place.
-I really want to see more of the world, Japan is so super high up on that list.
-Mental health isn’t a linear binary, there’s highs and lows and that’s ok. Being kind to yourself is easier at times than others.
-I’m incredibly hard on myself.
-Check in on friends/loved ones, they might be missing you as much as you miss them.
-I didn’t realise that a number of people felt so strongly that people with chronic illness/disabilities should ‘just stay at home’ so that they could get on with their own lives.
-Selfish people will always be selfish, even in the event of a global pandemic.
I’ve been pretty absent recently from blogging because at present I’m just not ‘feeling it’. I don’t have anything useful, fun or interesting to share, I’m just existing. I did however want to share a gentle reminder (to myself and anyone else that needs to hear it) THESE FEELINGS WILL PASS! . I wanted to make a post on World Mental Health Day to uplift others but it felt like an imposter move when I’m struggling to lift myself up. But I realised that how we experience mental health isn’t a linear process, it’s not plain sailing with gradual highs and lows. Its ever changing, its determined by exterior factors as well as internal beliefs. Its not neat and tidy, its messy, its disorganised and at times conflicted. Raising awareness of mental health issues isn’t about forcing happiness, positivity or false positivity. Its about being open, with ourselves and others. Its about removing the stigma attached to discussion surrounding mental health matters. Its about creating a safe place to work through struggles, to process past events and deal with the day to day. So all I can think to concisely sum up is ‘these feelings will pass’. . I’m finding myself increasingly overwhelmed lately, I know that I’m retreating into myself again and I’m trying to claw my way out of the hole, but I’ll move forward from this again, just like I have before. This is simply a blip. It’s not a defining feature of me, it’s not a failure as a mum, partner, daughter, friend or any other facet of my whole person. It doesn’t mean I’m failing or a failure. It’s a blip, that’s all. . (pic from today’s school run woodland walk ft. Cute ghost because it’s spooktober).
I admit it : I get caught up on numbers at times. Likes, followers and FOMO have, on occasion driven my social media use. I’ve questioned whether I am talented enough, interesting enough, creative enough. I’ve compared my body to others, felt fear of missing out, wondered what value I have to the wider society. Am I enough in general? . The truth is, you are not your likes, followers or ‘numbers’. Constant comparison to other’s carefully curated selection of images or tweets can cause or exacerbate body dysmorphia, ED and mental health conditions. . We’re seeing posed, edited, modified images at times. Other times we see only part of the bigger picture because, of course, we want to express ourselves in the most positive way possible, who wouldn’t want others to see them in the best light? . Likes and followers are validating; it feels good, don’t get me wrong. The issue arises when social media leaves you questioning your own validity. . ‘why am I not getting likes’, ‘my art isn’t as good as that person’s’, ‘I’ll never look like that’, ‘my life looks boring in comparison’. . It’s a negative cycle of consuming more social media content, fueling the negative self talk and damaging your self esteem. . What would you post if there were no like buttons? If people just saw your posts but there was no option to ‘follow’ you. Would you post what you loved? The magical family day out you all enjoyed? The piece of art you lovingly created? The meal you carefully prepared? The selfie where you were feeling your oats? . During this time social media is essential for maintaining and establishing social connections but it’ll never replace human to human contact. . If your social media use is impacting on your health it may be time to take a hiatus. Be kind to yourself and give yourself distance from the curated environment that is social media. Be present in your daily life without FOMO. Your life, art, skills are all valid. YOU are valid. You are not your numbers.
Did you know July is Disability pride month? I didn’t either. But finding this out made me think about my own journey and experience of living with disability and chronic illness.
I’ve openly struggled with coming to terms with my disability, my mental health took a nose dive when I developed cauda equina syndrome (and other comorbid chronic illnesses). If I said I was over this now I’d be lying, but I’ve made huge leaps towards accepting and even embracing my circumstances. I no longer feel the need to try and hide invisible aspects of my disability, I no longer hide my stick in pictures (instead I diy’d a cute one), I don’t actively focus on what I can’t do anymore; instead I try to focus on the huge amount of things I can still do. I focus on my abilities and strengths to work towards achieving my goals. I’d even go as far to say that this embracing of my circumstances has made aspects of my life more fulfilling. I have opened up my small business, I have set out to learn Japanese, I’ve gone back to university: I have a purpose to each day, purposes that my disability does not stand in the way of (often, but particularly bad days do put the brakes on plans frequently).
Being so focused on my disability made me question my self worth, my value to others and my ability to contribute to other’s lives. It was exhausting constantly talking down to myself, convincing myself that life as I knew it was over. I was worthless.
Now I’m done with hiding and shaming myself. I’m done apologising for something out of my hands. I’m here, it’s more than OK for me to hold space, I have a voice and I’m most definitely going to use it. I’m happy to answer any questions, I’m ready to call out ignorance.
The National Council on Independent Living raises important points on disability pride as a movement.
“Why do we need Disability Pride? Why is it important for people of all ages to feel pride? Many disabled people, including young people, are exposed on a regular basis to ableism. Ableism is present throughout society, and can take the form of condescending, rude, or abusive attitudes towards people with disabilities, leading to lack of accessible and inclusive services and communities.
A very common form of ableism is inspiration porn; Stella Young defines inspiration porn as “…to objectify one group of people for the benefit of another group of people.” Inspiration porn is meant to “inspire you, to motivate you and make you think, ‘well, however bad my life is, it could always be worse. I could be THAT person’.” Disability pride is a tool to fight against ableism by affirming one’s self-worth as a disabled person in an ableist society”.NCIL
I’m proud of the person I’ve become, I’m proud of attacking each day regardless of what it throws at me. Disability was the catalyst for change in my life, that has shaped and is shaping who I am, and am becoming. My disabled identity is just part of me, it’s not my defining characteristic.
Quarantine day…. I honestly don’t even know anymore. I’m not going to lie, today has been a slog and the days are just blurring into each other and are equally trying. I thought that when uni work was out of the way I’d feel more relaxed and have more productive days. I thought I’d be super productive at home, maybe even turn into a “hincher ” (fun fact: I haven’t). I thought I’d stick to a semi regular blog posting schedule and add a heap of new items to my store and step up my shop game. I thought I’d become an Instagram worthy home schooler with Pinterest activities coming out of my ears and a child eager to learn. The truth is I’ve been busy in one sense of the word everyday and don’t feel that I’ve achieved much at all. There’s still a heap of stuff I need to do. Homeschooling has been sporadic, Pinterest homeschooling activities have been put to one side and parenting has been hard work despite all the joy kiddos bring. Diys have been halted due to running out of paint (and steam). I spend most of the day just wishing things could be normal but the thought of rushing back to the new normal terrifies me. I know this sounds trivial and don’t get me wrong I realise people are in far worse scenarios than I am. This isn’t to minimise their difficulties in any way, shape or form. The quarantine has blown minor things into more major ones and played havoc with things going on in my head. I’ve been experiencing intrusive thoughts, heightened anxiety and have become hyper critical of myself. I’m longing for some semblance of normality or the ‘new normal’ to be more clear cut. So this post has no real point other than to say, we’re all only human, we’re all living in difficult times one way or another . It’s ok to feel iffy, this is a super scary time. If you need to talk, I’m here, reach out.
I am feeling beyond disconnected. With friends, family, the local community and myself. I feel lost.
I’m struggling today. Even ACNH isn’t helping and normally it’s a great distraction . Nothing really feels real or right and my anxiety is sitting pretty high on average. The thought of coming out of quarantine is terrifying, the fear of what happens when we try to move forward is unreal. I’m afraid of what happens next. It’s hard to see what the future holds, or at least frame it in a slightly positive light
I’m angry that we’re being failed by our government, I’m angry that healthcare workers aren’t being adequately protected, I’m angry that key members of government have felt that they could take actions that many others haven’t despite difficult circumstances. My heart breaks thinking of the families who are apart and hurting, those at the end of their lives who have to be alone, those who can’t say goodbye to loved ones
Today isn’t a good day and I can only hope tomorrow is better, the problems won’t have magically been resolved over night but maybe I’ll be better equipped to deal with them tomorrow. Right now I’m going to throw myself in to enjoying the weather with my son. I’m so grateful I can be at home with him and stay safe. I truly hope our key workers can do the same, I am so so grateful for the sacrifices you are all making. Thank you.
It’s a short post this time guys but the last few weeks have been super busy and my virtually non existent posting schedule has gone out of the window. There’s something about the new year that always makes me feel reflective and focused on my goals for the following year, throw a new decade into the mix and I’m super charged reflective. I’m aiming to start a bullet journal for 2020 so that I’m beyond organised as well as accurately tracking life’s ups and downs. I’ve got a whole Pinterest board dedicated to my journal but would love to share ideas from current bullet journal users too!
This new year’s reflection has got me thinking about how much life, and I have changed not only over the past year but the past decade. I’ve been thinking a whole lot about friendship and how in the past year I’ve ‘conducted’ friendships.
I’m not a bad friend; I’ll love you fiercely, protect your name and reputation. I’ll defend and support you no end, I’ll be your biggest cheerleader as well as a shoulder to cry on but often it’s from a distance. I’m not a bad friend but I’m an absent one. I’ve kept myself to myself for long enough now where I’m not sure if I’d know how to ‘act’ in big social situations anymore; with anxiety and disability issues thrown into the mix, I don’t even know if I’d enjoy myself. It’s not a reflection on my friends, just me being a an absent friend, at times a ghost. A ghost friend and a ghost of my former self, maybe. If you looked at me at the beginning of the decade you’d rarely find me at home and you’d struggle to find me enjoying time alone. The thought of being at home, alone, with only my own company would fill me with dread. I guess I was to some degree an extrovert, a social butterfly; I drank a heap, went to parties and raves regularly and hung out with friends mostly every day. I wasn’t unhappy then but I was far from truly happy and I wasn’t being my true self. I forgot my hobbies and interests because they were solitary activities and I couldn’t bare to be by myself so I dropped them to focus on surrounding myself with people and activity.
At the end of this decade I now spend a vast amount of time home, I lost my job this year due to disability so my work social life is non existent. I rarely go to parties or out drinking. I enjoy quiet activities alone or with my little family or on rare occasions small groups of friends. Being alone doesn’t mean I’m unhappy; it’s quite the opposite. My time is spent with my son being the best mum I can be, creating or crafting, getting my small business off the ground, gaming and enjoying my home and those in it. I do things at my own speed without worrying about how I may slow others down. I can move in my comfort zone, feeling safe and secure. I don’t feel the fear of missing out any longer, I can be a part of things if I feel able, if not I don’t dwell over it anymore.
With a new year and new decade looming I’ve decided that it’s important to maintain these safety boundaries but challenge myself too. I’ve become a little too comfortable in my own company, I realise that being a ghost is fine to a degree but I need to put myself out there more and physically be there to maintain friendships. I’m aiming to make more effort to put myself out there, see friends more, try things I’ve avoided due to anxiety. It sounds like a mountain to climb when I think of it now, But I know that in small steps I can get the right balance. I can be the friend who may be a ghost at times but a friend who can also be physically present too. I want to have fun experiences to look back on fondly, I want to have days trips and movie nights to look forward to as well as looking forward to my quiet time in my safe place. In 2020 I’ll still be an introvert because that’s who I truly am, I may still even be a ghost at times because it’s how I feel safe. I’ve set boundaries for my mental and physical health that need to be maintained and nurtured but I’ll also be more present and put myself out there. I want to connect to old friends, meet new ones and maintain current friendships. I feel my opportunity for growth lies in the balance of introversion and being available to see friends in person, so my ‘new years resolution’ is to be present: In any activity or situation I’m in, with whoever I’m with. In 2020 I’ll be putting my energy into the very moment I’m in and giving it 110%.
That’s a wrap on 2019 folks, my other resolution is to get my posting schedule sorted so I post less sporadically. I’m going to work so hard on ensuring that this blog grows and moves from strength to strength. I post mini blogs pretty much daily over on Instagram, come and join me by searching @konnichiwakittyblog.
I truly hope the new year treats you well, here’s to a new year, new decade and a shiny new outlook.
I wasn’t born with a disability, nor did I have an accident. In fact I was a relatively healthy 29 year old who’d just had my first baby and was adjusting to motherhood and looking forward to the future.
In the months after giving birth (May 2016) I had worsening back pain, which was constant, stabbing and affected daily life. Every month passed and the pain didn’t disappear, it progressively got worse. Every month I spoke to or visited the GP about the pain multiple times, often every other week. Every month I was told it was to be expected, aches and pains were the norm as I’d not long had a baby, every month I was given varying doses of painkillers which didn’t help, I’d either be doubled over in pain or spaced out barely functioning. I self referred to a physiotherapy unit at the local hospital and although they did try to help they eventually discharged me due to not knowing what the underlying cause was.
After hounding the GP for the best part of 6 months they eventually referred me to an Osteopathy practice. There was talks of epidural injections, the possibility of a spinal block, but these things didn’t materialise and instead my spine was just physically manipulated at the few appointments I had, leaving me in agonising pain and unable to lift my six month old son. I was told to rest that this pain was possibly a slipped disc and that it would likely ‘see to itself’ in time. That time never came. The pain instead grew and became completely unmanageable, my bladder and bowel function was non existent, I lost all sensation in my left leg and then my right leg. At this point I was rushed into hospital for blood tests, physical examinations and MRI scans. It was discovered that my Cauda Equina nerves had been crushed by a number of massively herniated discs and I would need emergency spinal surgery to prevent any further damage. It wasn’t clear how long these discs had been compressing this series of nerves or how severe the damage would be following an operation. I had never even heard of Cauda Equina Syndrome, let alone knowing what the nerves controlled or what the prognosis for recovery was. I was terrified. Scared for the spinal surgery, scared for the future and ultimately scared that the damage was permanent.
Following the surgery I was still in pain, but this was to be expected as there had been discs, facet joints and more removed from my spine. I tried to move forward the best I could but I wasn’t able to return to my old job, the pain was still present and I still wasn’t able to pick up my son. This remained the same for the next 10 months when I reached a state of acceptance that I’d be stuck using crutches for the foreseeable future, stuck having to self catheterise due to the nerve damage to my bladder and the damage meaning I wouldn’t be able to empty my bladder ‘normally’ anymore. I returned to work in a new role where I spent the next 18 months muddling through still in pain but at least feeling like I was moving forward. I even managed to start going to the gym in the hope of building up some strength again. This happened over the period of August 2017- December 2018. I felt that I’d turned a corner and was adjusting well to my new ‘normal’; but in the December of 2018 things began to change again for the worse. The pain was growing once more, the amount of downtime between activities was growing, I’d been here before and I was concerned.
In the January of 2019 I returned to work after the new year break and instead of feeling relaxed and ready to work I was in agony, my ‘good leg’ (the right leg I still had sensation in) was getting numb, my bowels had stopped working again and I knew something was wrong. I was sent from my department in the hospital straight to a&e where I had the same tests and MRI as before but all they found were prolapsed discs not warranting immediate surgical intervention and I was sent home awaiting referrals to other departments. Neurosurgery didn’t want to see me as it wasn’t something for them to become immediately involved with so I was passed on to the pain clinic. The pain clinic is designed to help those with long term pain with medication adjustments and often mindfulness exercises. I didn’t need mindfulness, I needed help. But I persevered with their appointments, saw a consultant in pain management who diagnosed Cauda Equina Sequelae, Complex Regional Pain Syndrome as well as failed back surgery syndrome and piriformis syndrome but I left feeling deflated as his suggestion was to just up my medication and see how it goes. I didn’t want to wait and see, I’d been in a constant state of wait and see thinking for the last few years. I then saw a specialist physiotherapist who was concerned by the continuing pain and changes in bowel and bladder function and sent me for another MRI in April 2019 which again showed disc changes but not something requiring immediate surgical intervention.
Now in June 2019 I’m awaiting my first appointment with a Spinal rehabilitation specialist, I can’t say I’m feeling full of hope. I feel lost in a system, passed from pillar to post, full of medication which isn’t helping and isn’t getting to the bottom of the issue. I feel like im trapped in the body of a 90 year old woman not one that is expected for the 32 years I’ve lived. I don’t know what the future holds. I don’t know if this time next week I’ll have a solution or even this time next year. I haven’t adjusted well to these changes and as with any disability there is a grieving process. I’m grieving the loss of my independence, I’m angry that I took being able bodied for granted, I regret not taking better care of myself. The last stage of a grieving process is acceptance, whilst I may have reached that point previously it feels that at present I can’t and won’t accept this new me. I want to be how I was, I want to act spontaneously without the masses of planning required to carry out even the smallest task. I want to not feel such resentment and anger at myself and my situation. I want to shake this crippling anxiety and low mood but most of all I don’t want to feel like a burden. But despite all this negativity I still get up,get ready and face the day the best I can. I still try to live as ‘normally’ as I can, often pushing myself to the point of exhaustion. It’s not easy but I’m not giving up, trying my best and having hope is all I can do on my worst days.
I don’t speak for every one with a chronic condition or disability and I don’t try to. This is one person’s account of adjusting to an ever changing lifestyle and the challenges that chronic conditions and disability bring to everyday living. Who knows maybe in the future I’ll have to post another blog about my experiences of living with these conditions and maybe I’ll have adjusted better by then, but for now this is a truly honest account of the struggles of just getting by. No matter how hard this struggle is I have to remind myself of the positive aspects; I’m spending time with my son which had I been ‘well’ I wouldn’t have, I’m closer than ever to my loved ones, I’ve rekindled interest in activities I’d not been making time for, I’m finally going to be finishing my degree. All huge positives that perhaps if I’d have been ‘well’ I wouldn’t have had chance to do. Sometimes we’re so caught up in life we forget things we enjoy and what makes us ‘us.
Things are far from easy right now but perhaps these things happen to help us discover our true purpose and push us in new directions. Maybe we’re just unlucky. All I know is that I’m learning to live my best life despite difficulties and I’m not letting these chronic conditions steal anymore of me.
Konnichiwa Kitty 