Be strong now because things will get better. It might be stormy now, but it can’t rain forever
Unknown
This is the final part of Sometimes the mental is harder than the physical – A Series. This is perhaps the most important step in ensuring you stay sunny as opposed to cynical. On those darker dawns, when you wake up feeling like you’ve been hit by a bulldozer, when it feels as though that light at the end of the tunnel is moving further and further away…I’ve found it of paramount importance to remember one simple truth – It won’t always be this bad.
You will be better than this.
IT will be better than this.
Our current predicament, be it COVID-19, Illness, Heartbreak, Loss, or something else of the sort is a bad patch, a bump in the road, a dip on the rollercoaster ride before you start that upwards climb once again.
Even though my condition, in medical jargon, is classed as chronic that doesn’t have to mean its perpetually the same or forever unchanging.
Even though your heart feels as though it’s been shattered into a million pieces.
Or as though the sudden disappearance of that special someone has left a crater in your life, so deep that if you fell in you for you fear you’d never be able to climb back out.
Just remember…
I will AND HAVE found ways to improve.
YOU will feel better – and even though time is so warped at the moment, TIME really is a miracle cure.
I know we will find a way to manage the new limitations and god knows I won’t let anything stop me from living the life I choose.
It’s going to take work, time and determination, but really, if anything is worth fighting for, then I think this might just be it.
If at this present moment that means doing absolutely nothing except rewatching the Harry Potter series… then that’s what needs to be done, because I’ll do whatever it takes (Side note: any documentary or Netflix recommendations will be greatly appreciated!)
I suppose what I’m really trying to say is that illness isn’t easy. Losing someone is horrid and surviving a global pandemic is no mean feat, putting it plainly – Its bloody hard, both mentally and physically.
For me, the pain is pants, the paresis is petrifying and passing out, problematic – But I’ve found the hardest part is to not lose myself in amongst this whirlwind.
The hardest part has been to maintain a resemblance of ME.
Prior to illness, if someone was to ask me how to describe myself I would have listed off my hobbies, my university and possibly even my future career dreams. I thought that those things were what made me, me. So, when those things are suddenly ripped away from you, it can feel like you’re floating in mid air, without any conception of who you are and where you are going.
The same can be said for everyone now that our freedoms have been constricted, you used to be a lawyer…Well now your on furlough…so can’t practice? You used to be a student… well University is closed so what are you now? You used to be the life of the party…What Party?
Its scary.
However, only recently have I come to realise that those things I used to love to do and wanted to pursue do not in-fact form the innate composition of my personality or my being.
The truth of the matter is, I have always been, and always will be a daughter, a friend, someone who loves sport, musicals, a good debate and has absolutely no filter when it comes to my opinions… These things won’t ever change and no illness or global pandemic could ever take them away from me.
It may sound silly, but by being stripped of the auxiliary parts of my life, those accessories, the pretty parts, has meant that i’ve been forced to discover the true, raw version of myself. I’ve come to realise that no matter what happens with my physical health I will always be me…and by extension that means that those who love me in my current slightly dysfunctional, vulnerable yet completely honest self… aren’t going anywhere.
My certainty in that fact helps me to regain balance when my body has a wobble, challenge the darkness and find the gap between stimulus and response.
Yes, the current stimulus is that my body has decided to flare, dysfunction and become all confused again… I can’t control that. No one can escape the fact that we are now living in a time that feels more reminiscent of a sci-fi movie plot than actual reality…we can’t stop that. What I can control is my response, I can choose to run (figuratively obviously) towards my friends and family, spot those silver linings, listen to my body and find the strength to heal; And so can you.
I can choose to not take a deep sea dive into those swirly dark waters of cognitive negativity, but to dust myself off, put my big girl panties on and keep calm and carry on.
We all have times of self doubt, moments when we get knocked back and have to re-think. What is important is not why or how you fell, but how you get back up again.
Don’t let anyone (even yourself) think you can’t…After all, nothing worth having comes easy and Anything worth having is worth fighting for – Suzan Elizabeth Phillips
Sometimes the mental is harder than the physical – A series – Part 4
Well hello there old friends, I know its been an age since we last ‘spoke’ but as we all know these last few months have been odd to say the least.
As life as we know it has come to a complete halt, its feels as though someone has hit a big red stop button on the world and then some invisible force has booted us out of the door for good measure. Subsequently, I think everyone is now experiencing that terrifying sensation of being thrown into outer space without a chord, floating in mid air without any idea of how to get back. For me, the wrecking ball that knocked my life off course came crashing into my world a few months earlier, bearing the name of autonomic dysfunction. However, for everyone else, this meteorite is COVID-19.
I started to write these series’ of posts a few months ago, in an attempt to offer comfort to those of us whose lives had been battered by illness. To provide a community and a place of shared emotions, experiences and solutions. I wanted to impart some of the instrumental tools I’d discovered along my journey. After all, it’s no mean feat to dust yourself off, keep calm and carry on, when you feel as though your life has been hit by a freight train.
However, it seems to me like the entire world can now have a new appreciation for what us ‘special people’ have been going on about. Subsequently, perhaps my little ramblings might offer a new insight, solutions or support from someone who’s been living in a ‘new’ normal for a tad longer.
If you’re still with me, I present Part 4 of Sometimes the mental is harder than the physical
This week is about friends and staying social.
When the time came to call up my university and officially request a leave of study, to have to finally accept that I wouldn’t be returning, that I needed to leave my friends and stay home, I was terrified. For a brief moment I truly believed I was now destined to be a recluse, the modern-day Boo Radley or Crazy ‘dog’ lady. Someone with no friends and no social life. I couldn’t imagine why anyone would want to be friends with a ‘sick’ person, someone who couldn’t go out to the pub, a night out, or even remain in social situations for more than an hour before beginning to struggle.
Whilst not identical, these fears of being socially stranded is one echoed by many in light of our current imposed isolation. After all, it seems as though a pub crawl will remain a permanent feature in the rear view mirror of our lives for some time longer.
Unfortunately, this past week I’ve found myself in another turbulent time. Experiencing excruciating pain, paresis and potsy-ey-ness all over again, culminating with a trip down memory lane right back to arms of my favourite nurses in A&E. It appeared as though I had reverted back to the same health status as hospital in-patient – featuring the same symptoms I had been battling with around my birthday.
This once again demonstrated to me the harsh reality that seeing the bright side is a damn sight easier when you’re not in the middle of another shit storm (excuse my French).
As a result of my physical health taking an abrupt dive downwards, I started to focus on everything I had lost; university, friends, my independence, my hobbies, my career plan, my mobility – everything that had once made up dominant components of the life that I loved.
Everything that once was certain appeared to slowly be turning out to be an impossibility. – Sound familiar?
Now in the age of Corona, I see yet another parallel to my feelings and those elicited by this global pandemic. Millions of people have lost jobs, graduations and future’s, let alone family members and friends; And so, it’s not hard to stumble, and dive headfirst down that slippery slope of sadness and self-pity. – Add into the mix that we live in an age of social media and a quick scroll through Instagram elicits the impression that everyone else is living their best lockdown life.
A five minute stalk can have you believe that everyone is using this time to smash their goals, do multiple online workouts everyday, to learn a new skill, start a hobby and generally portray the impression of a lovely and productive lockdown.
Whilst rationally it’s common knowledge that one only posts the highlights of their life and therefore these platforms depict a far from accurate representation of someone’s life…it can still be frighteningly easy to become certain that your life is a tragic disaster and everyone else’s is a million and one times better than yours. That jealousy of the life they are living, and by extension the one you should have, can soon turn into frustration and anger at yourself and your situation.
However, if you flip it around…whilst social media can highlight the stark contrast between your situation and the lives of others, it can also be an amazing way to stay in touch with those people – Regardless of where they’re located geographically.
Throughout my own isolation… Texts, Phone Calls, FaceTime, Snapchat and WhatsApp have meant that I don’t feel quite so out of sight out of mind or alone! Whilst everyone is now shut away inside their own four walls, modern technology means you don’t have to actually be alone. We’re fortunate to live in a time where staying connected is easier than every, so my advice…USE IT!
Prior to lockdown, hearing about friends tales of nights out, stresses about disastrous dissertations or something as trivial as a house drama was indispensable. Moreover, in those rare moments when I could be a friend to them, offer advice, be their sounding board or a shoulder to cry on was instrumental in creating a sense of normality for me.
Every single ‘touch base’ with mates made it easier to swat away those fleeting thoughts of worthlessness. They reminded me of what I’m fighting for and who I am. I promised myself that next time I was going to be there. That next time, when someone had a wobble, I was going to be there in person to add my 2 pence, to be able to wrap my crying mate up in a blanket, get her a cuppa and a biscuit whilst she ranted about her boyfriend’s most recent fo-par. Those glimpses of normality is what has kept my spirits up over the several months of my own personal isolation.
So, I suppose the same can be said about Corona. Throughout this unprecedented time it’s frighteningly easy get all consumed by the news, to allow that doom and gloom to envelop you and therefore slip into a less than bright and breezy headspace. Some people have therefore chosen to bury their heads in the sand and wait for the storm to pass.
The problem with that, is that you miss the rainbows which have a habit of shining through.
I’ve said it before and I’ll say it again, I’ve been astounded by those around me. Their resilience, tolerance and brilliance at listening to my moans, treating me normally when I’m doing well, being a shoulder to cry on when I get some less then favourable news and even acting as a sounding board and subsequent moderator when I have momentary lapses in judgement. Those friendships that have weathered my own personal storm have proved to be the prettiest and my most treasured flowers – they are the ones I will look after forever.
In a similar vain, maybe we can all look at this time, when the world stopped moving, as a forced, yet welcome break. We have an opportunity to use this time to invest in those people that are the most important to us. In normal life it is a rare moment when you have the time to spend an hour on the phone with someone and just chat to them one on one; To genuinely find out what is going on in their lives, what they want to do, where they want to be – and yet, Corona has given us that.
Perhaps, this week (particularly in the spirit of Mental Health Awareness Week) we could all try to reach out to old friends, re-connect with current, and perhaps discover new!
So, on that note, it’s time to curl my hair and get ready for a zoom call with some of my oldest friends!
Sorry for the delay in posting this one but the last few days have proved some what of a challenge! However, if you’re still keeping up with my ramblings then here is Part 3 of Sometimes the mental is harder than the physical – A series.
Incase you haven’t already noticed I am a self confessed logophile (aka lover of words), therefore it should come as no surprise that the third way I have found instrumental in keeping my head above water throughout this whole experience is writing.
Whilst the most public aspect of my recovery, it has become one of the most cathartic things I have consistently practiced. As I continually battle to wrap my head around my ever-changing situation, writing forces me to re-shape the swirly whirly internal thoughts that whizz in and out of my brain every day into coherent sentences. My attempts at finding the words to best depict whats going on has had a huge hand in helping me to come to terms with it all.
Whilst I know sometimes this blogs content can be controversial and sad, I hope its also slightly amusing and helpful to some. Regardless, this blog is for me, it’s my place to share my thoughts, feelings and emotions. A place to share my truth.
In addition, by sharing these insights, those around me have been able to better understand what I’m going through, enabling us to attempt to traverse this mind-field together. In addition, My mum once told me that prior to my opening up and sharing my internal idiocies, it was the fear of the unknown, the assumptions that had to be made, that caused more suffering than the illness itself – The perpetual guessing at how I was feeling, often resulted in the presumption of the worst and subsequently a bucketload of worry. Therefore, whilst scary and intimidating, sharing the raw truth has not only helped me to realise what I’m thinking and in turn help me to accept it, but also help those around me – winner winner chicken dinner!
Personally, getting out those negative thoughts onto a page seems to get them out of my head until they simply don’t bother me any more!
We all need o have a creative outlet – a window, a space, so we don’t lose track of ourselves
Zoketsu Norman Fischer
Sometimes I’ve found myself scribbling a sort of mind map / bundle of words and doodles whilst I let all the the agitation and frustration flow out. They’re no works of art, certainly will not be featured in the Tate modern any time soon, or are for anyone else’s eyes, but in those moments of complete confusion, darkness and pain, sometimes it’s helpful to grab a pen and start scribbling. Whatever comes into your head – just get it out, that way it can’t bring you down anymore.
After the storm has passed, and you can look back at the calmer waters, you can begin to challenge those thoughts. Realise that those dark swirly waters of negativity that were trapped in your head (and have now been released onto paper) were, whilst possibly understandable, also completely irrational and utterly unhelpful.
Ultimately, you can’t prevent a flood whilst its raining, but after the storm has passed, you can start to build defences to ensure the repercussions won’t be so bad next time it rains.
I reckon the same goes for irrational thoughts and mental health. In the throws of a flare, when you’re feeling downright diabolical, its practically impossible to be rational, to take on any advice and make a positive change.
However, once the sun has started to appear again, the waters have calmed and you’re in a more receptive headspace, you can begin to build the dam. Try to remember what you were thinking in that hot moment and try to question it – Was that really a realistic thought? For example, consider; Have you had any experiences that contradict that thought, that prove it’s not completely true?
The benefit of writing in these catastrophic blow outs is that you know exactly where your head was at, and therefore are far more able to challenge it.
Added bonus; Keeping a note of the good moments, as well as the bad, enables you to challenge yourself even better! In those moments when I feel as though the light at the end of the tunnel is dwindling… being able to look back and realise that I haven’t always felt THIS pants helps to me to be more accepting and rational about the current predicament – After all, I have evidence that it can (and will) get better.
So on that note; homework for this weekend team = buy a notebook!
Hello again, and welcome to Part 2 of Sometimes the mental is harder than the physical – A Series.
Today I want to introduce you to another way which I have found surprisingly instrumental in helping me along my journey to ‘Rediscovering Healthy’ and achieving my ultimate goal of once again becoming happy, healthy and strong.
As I’ve said before, and if you’ve read some of my previous posts then I hope you would agree – I’m a pretty positive person. I like to think I’m someone who doesn’t overthink things or get worked up too easily.
That being said, whilst i’ve always been the sunny side up type, and my new situation has forced this attitude to ramp up a notch… when you’re woken up by something slightly short of pleasant it can quickly start your day off on the wrong foot.
This is where Idea 2 comes in… Morning Meditation / Yoga.
** Before those of you that know me roll their eyes and laugh at the irony of this one just bare with me… And for those that are new to me myself and i, let me give you a small amount of context ..
This time last year, my lovely housemate was repeatedly asking me to attend some Yoga Classes with her. However, I repeatedly refused as i’ve always been more of a ‘run type’, preferring a sweaty HIIT session over some sun salutations.
Anyways, following several conversations with healthcare specialists and not so subtle suggestions from my mum… I decided to conduct some of my own research into the links between meditation and illness management .
To my dismay I quickly came across several medical journals and reports supporting my mums insistence and advocating the benefits of morning yoga. As I kept reading I quickly found myself immersed in the minefield of neuroscience and epigenetics, fascinated by the work of Dr Joe Dispenza and his focus on positive energy.
Several podcasts later, the crux of what I’ve come to understand is that positive energy and stress can have physiological impacts on your body. From my understanding of epigenetics, DNA strands are like Christmas trees, with different parts lighting up due to different ‘pressures’. When different ‘lights’ are on, different compounds are coded for and produced within the body.
According to Dr Joe your emotions and experiences constitute the vocabulary and words to communicate with this coding DNA. Subsequently, if stressful, sad, traumatic or detrimental thoughts and experiences constitute the language within which you are communicating with your body then this will illicit the creation of weak / less resilient genome, therefore making your body physiologically more susceptible to pain and further illness.
BUT… if we were to flip this on its head… positive emotions could then cause the happier, healthier and stronger part of the gene Christmas trees lights to switch on, resulting in better DNA coding, causing happier, healthier, stronger calls which would be more resilient to illness, right?
With every thought you think, every emotion you feel, and every event you experience, you’re acting as an epigenetic engineer of your own cells
Dr Joe Dispenza
Side Note; if you want a brief (ish) overview of Dr Joe’s work then he has a few podcasts with London Live on Apple Podcasts or go not his website as he has some overview-esq videos on there.
As I continued contemplating undertaking some meditation of my own, I started to feel as though the practice was following me EVERYWHERE (stupid google algorithms) and so, begrudgingly, I downloaded a yoga app on my phone.
I have to caveat that I had to reach a very low point on my healthcare journey before I embarked on my very own meditation journey…
I hoped that the practice of focusing on my breath, clearing my mind and attempting to genuinely listen and tune in to my body would have at least some of the scientifically proven results cited by Dr Joe. In particular I hoped it would help to calm my nervous system (and subsequently reduce some of my pain) and with a little luck maybe it could support optimal healing!?
I must now admit that after a few weeks I’ve become a fully fledged member of Yogi’ Lover and a rabid advocate of its benefits.
Personally, I can vouch for the benefits proposed by Dr Joe. I would even add into the mix that a bit of gentle movement and stretching in the morning provides some temporary respite from my general body pain. Plus, added bonus; some of the poses are tough nuts to crack, so i’ve found that progressing through the levels has been an achievement all in itself!
If we go back to the logic of Dr Joe then these moments of calm, elicited as result of focusing on your breathing, accompanied with the satisfaction and self actualisation of achieving progression of the practice is also helpful. Not only due to the short term relief it provides, but also for your long term health.
In these moments of meditation you change the vocabulary, experiences and words with which you are communicating with your DNA, from something full of pain into something positive and strong, therefore, apparently, promoting the creation of happy, resilient cells.
I know the rhetoric around meditation and yoga can appear a bit wishy washy, and prior to my recent transition into Yogi I was definitely was a firm believe that Yoga and Pilates were activities exclusively for yummy mummies or those over the age of 45.
However, sometimes when you get to a point in recovery where the conventional methods can only get you so far… its time to drop those pre-conceptions and give the alternative a chance! So go take some deep breaths, try listen into your body and think happy, healthy thoughts…. You never know, you’re body might just get the message!
Sorry for the lack of activity over the last few days but I’ve found myself in a bit of a pickle (again) but anyways… This is a post I have tried to write several times but have struggled to find the right words that successfully convey my intended meaning. Perhaps thats because discussing mental health still remains a tricky task?
As you know I’m a bit of a rambler / over-sharer and so I’ve decided to just throw hazard to the wind and go for it. I hope it makes sense and will resonate with some of you, maybe some people can relate and hopefully will find some things I say useful.
Todays Blog post (incase you missed the title) is about managing your mental health whist battling the physical.
You wouldn’t be mistaken in assuming that I’d be the last person in the world to write this post, and prior to Summer 2019 I would’ve been inclined to agree with you. I’ve never been one to be overly emotional or mushy and have been known to regularly tease friends about their soggy pancake tendencies – A tough cookie or blunt are more apt descriptions of my previous emotionality.
That being said, sticking with my promise to be unequivocally honest, I must admit that i’ve personally struggled with how I feel about my current predicament, battling to come to terms with the huge re-route my life has, and will continue, to take.
Whilst i’ve always been a pretty positive person and more recently have become rather adept at spotting the silver linings… Sometimes that’s harder than dealing with the physical.
Sometimes looking on the bright side and finding the determination to try again, is the hardest part.
Dealing with the tangible presentations of illness is tricky. However, slowly but surely i’ve learnt to laugh through the pain and found ways to still do what I want – You guys should see me scoot about the kitchen on my chair whilst getting creative in the kitchen.
However, accepting the uncontrollable, often restrictive repercussions of these physical manifestations isn’t quite so simple.
Sometimes dealing with the ripple effects that this great big meteorite of an illness is having on the lake of my life is the hardest part. Therefore, i’ve recently been making a conscious effort to look after myself both physically and mentally.
Whilst it wasn’t an easy decision to admit I was struggling to come to terms with my new reality, discussions with friends and family helped me to realise something that I think is of some consequence and helped swing me round to the idea…
The truth of the matter is we all have mental health, the same as we all have physical health. Sometimes our mental, same as our physical, isn’t always top notch. The same way you can break a leg, pull a muscle or catch a cold, your mental health can have wobbly moments too – moments when its slightly less than perfect! I realised that, same as I would get a cast, put some ice on my hamstring or take some Lemsip, I needed to find the First Aid kit for my head.
It was at this point, when it seemed as though I had hit rock bottom…again…that I began to write this post – It was intended as a way to make myself stop and think – to halt the downward spiral and find the gap between this slightly less than ideal situation and my reaction.
Between stimulus and respond there is a space; In that space is our power to choose our response. In our response lies our growth and our freedom
Victor E Frankl
Subsequently, I have come up with these 5 ways in which to manage the mental, whilst dealing with the physical…
I am planning to release 1 per day in a sort of series as is all a bit long winded for one post
And so Part 1…
1. Remember that resting IS doing something aka Healing
It has become an ironic joke amongst my consultants, family and friends that a dominant trait of my personality is my restlessness. Therefore, metaphors such as A busy bee, She’s got ants in her pants and full of beans have always constituted persistent features in school reports gone by. My parents used to threaten to stop me attending a training session / going somewhere as punishments, as opposed to forcing me to get out of bed and do something. The idea of a duvet day sounds more like the plot to my own personal horror movie as opposed to something to dream about! Therefore, as you can imagine, when the pain and paresis hits – and my mobility is subsequently significantly squandered I immediately become particularly grouchy…
In these moments, lying in bed / on the sofa, feeling pretty pants, its unbelievably easy to let your thoughts run away with themselves; To dive off a deep cliff into dark depressive waters. Before long, you find yourself hurtling in a downwards spiral, down into a bottomless pit of negativity.
I think this is the point where you have to hit the big red STOP button on your brain and halt that counterproductive consciousness.
This is when you need to take a step back and force feed yourself a healthy dose of rationality.
Whilst doing nothing can appear completely counterintuitive (in my mind at least) and as if you’re failing because you’re not out there fighting for your health… sorry sunshine but you’re wrong!
The body is an insanely smart organism so listening to it, resting when you’re tired, stopping when it says so, and allowing it to do it’s thing and heal is NOT a waste of time! It is in these moments that you’re actually doing THE MOST productive thing – you’re healing!
Top Tip; Try to enjoy it —> I still struggle with this one, but some people would kill for all the free time you have! You’ve literally been given a free pass to be a couch potato! Recovery is one of those few times in your life where you can actually do those things everyone says they wished they had time for. So, catch up on that Netflix series, learn a language, get baking or start making a dent into that mountain of unopened books you’ve accumulated from Christmas’ gone by.
Ultimately, when you’re in the midst of a flare you can’t control what your body is doing. The conditions is called autonomic dysfunction after all… aka ITS AUTOMATIC…
Whilst this unavoidable fact of my illness can exacerbate feelings of helplessness and victimhood there is one thing your can control.. your response.
Along this thought…I’m trying to respond to these uncontrollable moments of exacerbation with compassion and acceptance; learn to dance in the rain and smile in the face of fear.
So for now, i’m going to try to sit back and bury myself in my grandads library, as endeavour to work my way through every literary word he has accumulated over his lifetime… Wish me luck!
Maybe you’re not healing because you’re trying to be who you were before the trauma, that person doesn’t exist anymore, there is a new person trying to be born. Breathe life into that person – Lynette Duncan
I’ve written about my fight against this troublesome trio, the internal battle. – Constantly following the ‘warrior’ narrative.
My final goal; To get back to where I was, who I was, the life I had.
This is a narrative that can be seen everywhere, in conversations regarding all aspects of our lives – this idea of fighting and bettering the old you in an attempt to create a better new one. ⠀
We’re soldiers and warriors, we’re going to win the battle, kick the arse of the enemy, and end up triumphant; fighting to overcome our own uniquely perceived source of oppression. For me, this meant beating the trifecta and eventually getting back to the old me.
In my head, it has been me against my body.
I’ve repeated this story again and again, using this narrative to explain how it felt as though I was in a constant battle for supremacy within myself. Joking that I was jostling with some invisible invading alien, fighting to regain control of my body, battling to take back the reigns.
A ‘bad day’ became a signifier that my alien body had won this round…But not for much longer… I was determined to literally beat myself, my body.
I was determined to get back to the old me. Completely devoted to pushing through, fighting harder and to eventually winning.
My grit and determination stemmed from my certainty that this current reality, my dysfunction-ing body and general shitty health, wasn’t acceptable…and was most definitely not something that I could accept as mine.
I believed that its failure to work as it should, as it used too… meant that I was now my ultimate adversary – An enemy.
I perceived my illness as an unwanted tenant that had invaded my life and so everything had to be done to conquer it.
My life could only start again once this demon was overcome.
After a lot of research, listening to podcasts and reading academic journals I have decided it is time to change my tune a little (no that does not mean I’m giving up)
There is now plenty of new research that suggests that the use of this fighting, negative, angry, frustrated language can actually be harmful. It suggests that these narratives of guilt and failure can manifest into the worsening of symptoms and conditions.
By viewing my change in circumstance as a battle, as something I needed to overcome, I created a storyline where there needed to be a winner and a loser – But when you’re ‘fighting’ the innate workings of yourself… how can there be a victor?
By communicating with myself with angry, frustrated, painful and generally negative dialogue, the subsequent response of my body was also that of pain and frustration. Soon enough, you find yourself in a never-ending loop, where your body and mind are singing along to the same troublesome tune.
The only way I’ve managed to break this cycle and to start walking along my own rocky road of recovery, is acceptance.
That starts with a bit of mourning and feeling sorry for yourself. In a sense, i’ve had to mourn the loss of my old life, grieve for my healthy body, my six pack and my ability to run freely. Let go of the plans I had, and learn to live in the moment.
I don’t want to disillusion anyone and say this was easy.
It Isn’t
I am still finding new things I have to lose, re-route and change. Change how I live my life everyday in order to accommodate and adapt to my new way of functioning.
However, slowly this is becoming easier.
Of course there are still days when the frustration bubbles over, when I don’t want to feel so shitty anymore, I don’t want everything to feel so damn hard, when I wish above all else that I could swap my body in, and exchange it for an updated model…but, for the most part, I have accepted this new me and am learning to like it again (love might be a stretch for now!).
I never imagined my life would look this way. I never imagined that I would require daily medical intervention to keep functioning, and in my worst nightmares, I never thought I would be grateful for them. But I am.
I am so lucky to have access to the medications I need, to be able to rest when I need too, to take it slow when I must, and to have such a supportive family and an amazing network of friends who are always there to catch me when I miss the mark and exceed my limitations.
I’ve come to accept this new facet of my life and take on board what the research is saying.
This is the way my body works, albeit not quite like everyone else’s, not quite ‘perfectly’ (what is perfect anyways?) but its a part of what makes me, me.
I’ve decided its time to stop living in in denial, to stop trying to ‘fix myself’ and start figuring out how to actually build a life within my body, acknowledging both its limitations and its strengths. Working with it, as opposed to against it – After all 2 is always stronger than one!
Along with this acceptance comes a new insight into my reality. The good days may not last forever, but neither do the bad. My body is like a chameleon, it changes its colours each day, fluctuating and swinging along a scale.
I don’t know what tomorrow will look like, but I have to learn to go with the flow, take each day as it comes and accept the variations. I have to accept my bodies weird, and sometimes not so wonderful ways, but i’ve learnt thats the nature of living with an illness – always being prepared for the unpredictable!
Its the last day of January! That means its that time where everyone (if you’ve managed to stick with it for this long) is itching to reach for the biscuit jar, eagerly awaiting for the end of the New Years Resolution season.
A super popular resolution for 2020 was to pledge to attempt Veganuary with over 740,000 signing up! Just incase you’ve been living under a social media rock then ‘Veganuary’ is where you eat a vegan diet for the entire month of January. That means, no meat, no fish, no eggs and no dairy.
I suppose when you add no gluten and refined sugar into the mix then it seems that eating anything other than salad leaves is an impossibility, let alone eating out! However, I endeavour to prove you wrong – its all about perspective… think about what you CAN have as opposed to what you can’t.
With this mindset, I view this challenge as a new adventure and a time to experiment with new cuisines, new foods and new restaurants . So here are my top picks for eating out as a GF Vegan that I’ve found over this last month – trust me when I say they’re all delicious and so this list is in no particular order!
Honest Burger – London
This place has THE most incredible burgers in the whole entire world – you wouldn’t even know it was vegan!
Honest Burger is a delicious burger chain with locations across London, Bristol, Reading and Cardiff. They cater for Coeliacs and Vegans brilliantly! Every single one of there burgers can be made GF by simply swapping to a GF brioche style bun – so far its the only burger bun I’ve tried that was genuinely enjoyable (ima fussy kinda girl). Their signature rosemary chips are also divine and naturally GF but the surprise addition to your standard GF Burger trip (which helps to make this place quite so special) is the addition of GF ONION RINGS!
The permanent feature on their Vegan menu is a Beyond Meat Burger (which is now available to buy in Tesco) and is topped with a melty gouda style vegan cheese, chipotle mayo (which is my personal fav), mustard, red onion, pickles and lettuce – basically its burger bliss in a bowl and you would never know it was GF or vegan!
Honest Burgers also do a seasonal special where they create a new burger every month, available for one month only! January’s treat was the Bacon Plant featuring the signature Beyond Meat Burger, topped with THIS Isn’t Bacon, Vegan style smoked Gouda, Shoestring fries, no bacon ketchup, chipotle may, spinach and pickles. Served with their signature rosemary fries. To put it simply this is hands down the best burger I’ve ever tasted and lets just say I’ve been back more than once to have it again before it disappears!
Pho – London
If you’re in the mood for Vietnamese food, but fancy bucketloads of choice then Pho is the place for you!
With locations across London, Birmingham, Bristol, Cardiff and Reading it is quickly becoming one of my ‘go-to’s’ when visiting new places! The family run business serves Vietnamese style street food and the price is pretty damn affordable (added bonus), plus their signature Pho bowls can be on your table within 10 minutes! The majority of the menu is suitable for celiacs as they predominantly use rice paper or rice noodles in their dishes and this January they launched a full Vegan menu which is also predominantly gluten free.
Its difficult to choose a favourite as its all so damn tasty however the new House Special – Spicy Green takes the crown. It features either This Isn’t chicken pieces or tofu, morning glory, green beans, pak choi, fresh lime and Thai basil in a spicy veggie broth – This noodle soup style bowl is packed full of flavour and punch, However I would add a warning that it is MESSYYYY, so if you’re on a first date, wearing a white top or planning on staying clean for the rest of the day… it might not be your best choice… they even offer you a bib to eat it #goodlook. That being said I’d would personally say its worth the dribbles as its the best noodle soup I’ve ever tasted!
Ethos – London
I don’t think this place really needs any introduction. Located just behind Oxford Street, Ethos has got to be right at the top of my list when I need to refuel after a tiring shopping spree. Ethos operates on a weigh and pay system. Help yourself to whatever you fancy (everything is clearly labelled with allergens) then weight your plat and you’re away – ITS AMAZING. I’ll just let the picture do all the talking!
Lounges – Juno Lounge (Cardiff)
This is another chain that I love to frequent, with branches across the UK. If you’re looking for a top notch GF / Vegan breakfast or brunch then this is the place for you! My personal fav hangover cure is the Vegan Breakfast which features Falafel, hash browns, baked beans, slow roasted tomatoes, button mushrooms, spinach, roasted peppers and GF toast aka exactly what a hungry girl needs and ideally is available all day, so it doesn’t matter what time you eventually get up!
They also offer brilliant lunch and dinner menus including a few tasty tapas options so its always a good choice, particularly if your group cannot decide on what type of cuisine they fancy!
London St Brasserie – Reading
Ah where to begin… if you’re looking for a delicious vegan GF roast dinner that doesn’t consist of a dry nut roast or just veg and potatoes then this is the place for you!
Even better you can get it on any day of the week. It consists of roasted beetroot, grilled romanesco glazed carrots, chickpea & cep falafel, almond and sesame. Also did I mention the GF roles are the most delicious thing i’ve ever tasted!
There are also tonnes of options for meat eaters and GF’ers alike, combined with the bargain lunchtime deal of two courses for £18, you really can’t go wrong if you’re in the mood for something a little more fancy after a bit of retail therapy!
Cosy Club – Cardiff
The Cosy club has been one of my top local haunts whilst at university in Cardiff. Their selection of brunch, lunch and dinner options make it the perfect choice for any mood you’re in and with locations across the country, including Bath Exeter and Guilford there usually isn’t one too far away!
Most recently I tried the Roast Turmeric Cauliflower with Dukkah and Tahini puree, Kale Crisps, pomegranate molasses, Flaked almonds and Harissa Oil (which was spicccyyy) I also had to have a side of fries because they are arguably my top pick off the menu – the only struggle is the difficult decision between the thick cut chips and the sweet potato fries. Life Hack; Order to the opposite to your fellow diner and then share #sharingiscaring.
Nibsy’s – Reading
ITS ALL GLUTEN FREE – Whenever mum and I venture to Reading for a little shopping trip its a given that we pop into Nibsys! Whilst everything is GF they are slightly lacking on the Vegan front, however you only really need one right!? Some of the options include cinnamon Doughnuts toasted sandwiches, hummus salads – oh and my top pick , the Vegan Pizza (obvs)
Mildreds – London
Mildreds is one of those magical places that even a non Vegan GF ‘special person’ would enjoy! Theres only 3 branches across London, in Soho, Kings Cross and Dalston but its definitely worth travelling for! For veganuary they’re even doing a lunch burger meal deal , offering Burger, Fries and an organic juice for just £15 – Unfortunately, these cannot be made GF but never fear because the main menu (which is entirely vegan for Veganuary) has ample options to satisfy your appetite!
To exemplify my point when I visited most recently I couldn’t pick between so many options that we ended up throwing hazard to the wind and getting them all!
If you’re being a normal person and only opting for one main then my top tip wold be to choose the Levant chick’n kebabs with Persian lime butterbeans, fennel, lemon, spinach and whipped tahini because it was INSANE and nothing like I’d ever tasted before. That being said…If you’ve got a big appetite then a side of harissa braves (aka super spicy potato wedges) or the tamarind aubergines would be a real treat!
Wahaca – Cardiff
Fancy a spicy Mexican style salad or some vegan Mushroom corn enchiladas – then this is your place.
With branches across the UK wahaca is a fab choice if you’re in the mood for Mexican but don’t fancy splashing the cash. If you’re out with non-GF members then I’ve been assured the burritos are brill! I would recommend the Mexican Bowl which comes with Black beans, Green Rice, grilled squash, tender stem broccoli, slaw and fresh salsa and highly recommend ordering the Guacamole with tortilla chips to start because is it really a Mexican night without Guac!?
By.Chloe
Have you really tried eating out Vegan if you haven’t tried the famed By.Chloe?
With locations across the US and Canada, the chain has now taken London by storm, boasting 4 restaurants. My personal fav is located under Tower Bridge – Is there anything better than sitting by the river looking at Londons stunning skyline with a some seriously scrumptious vegan munch!? I think not.
There aren’t hundreds of options that are gluten free as well, however there are enough, ranging from smoothie bowls and salads to Mac n cheese, burgers and cupcakes . Oh and did I mention there are even cupcakes for your pampered pooch too!?
I opted for the Guac Burger which consists of a black bean-quinoa-sweet potato patty, con salsa, onion, guac, tortilla strips, chipotle aioli squished into one tasty gluten free bun – I’ll let the picture speak for itself!
Las Iguanas – Cardiff
This is my final restaurant of January’s round up and is one of the best!
I love going her with friends as there is something on the menu to suit everyone. Whilst their isn’t such a selection of GF and Vegan options as in other places, I can vouch for how tasty the ones they have are! I would highly recommend the veggie chilli which is packed full of sweet potatoes, butternut squash and chickpeas, served with rice and mini gluten free tortillas – TASTY!
So weather you’re very much over being Vegan, completely converted or thinking of just attempting to eat more plant based in the future then here are a few haunts to hit up!
If you have another other recommendations , let me now (link to contact) as I’m on the hunt for my next meal out!
6 months ago I was sat on a beach, munching on Ruffles and sipping on Fanta lemon with one of my best friends. The warming sun on my skin, the constant laughs, the elation after receiving confirmation of my 1st class exam grades from University – it was one of the first times for a while I had felt truly relaxed and content. During our trip so many deep topics were discussed, but one that kept coming us was our future – our promise to return together once we’d become a successful Doctor and Lawyer; as best friends forever. Little did we know that our not so distant future had a different plan in mind.
I would describe the second half of 2019 as one of loss in so many ways. There are those predictable losses that you would expect to have to come to terms with when knocked sideways by illness. The acceptance of a change of life. The loss of those habitual day to day activities. The acceptance that not everything will be quite so easily achieved as it once was – But the loss of friendships? I never thought that whilst trying to navigate the choppy waters of physical illness would I be hit by waves of desertion.
I thought I had a forest of friends, from the sassy ones, the good time gals and those that shared my passions and hobbies. – Many of this circle I’ve known for years. We’d shared countless experiences together, from incredible holidays to eventful trips and adventures. We’d supported each other through countless exam seasons and weathered the storm of our fair share of heartbreak. All these typical teenage challenges had cemented my confidence in our friendship and my certainty in their longevity.
You would naturally assume that like every other time before friends would draw closer at vulnerable times. You would hope that everyone would knit together and form net to catch you when you fall. As it turns out it can be a time where many drift away, turning my forest of friends into more of a vegetable patch!
The question that I keep coming back too is why?
Perhaps its a lack of understanding? How can someone understand something that isn’t final and has no expiry date. The vast majority of things in the modern world have a conclusion, with known rituals at their culmination. For example, a graduation, a birthday, a wedding – all these occasions have socially acceptable actions, with a specified time where one should send flowers, cards and ensure their presence. But, what happens when there is no end date? No pre-set behaviours? No rule-book for navigation? What happens when the challenge is rare, confusing, continuous and full of ups and downs? How are people supposed to act when faced with the reality that this challenge isn’t going to go away… that this one is here to stay no matter how many tubs of ice cream you eat or how many chic flicks you watch.
I remember all too well the initial period of concern and compassion from all those around me. The cards, flowers, phone calls and text messages as people discovered I had been admitted to hospital for the first time. It seemed as though nothing was too much to ask, no distance too far to travel, no time inconvenient. However, as days turned to weeks and weeks turned to months this help and support has begun to slowly dwindle away. Meanwhile my pain and battle has carried on, I still have to cope, just slightly more alone and in the shadows.
As time moves on, the distance between those you once counted on for everything becomes more evident. Messages become more infrequent, phone calls even less and offers of visits become non-existent. It becomes increasingly evident that your situation, your ‘change’ has caused more ripples that you initially expected. I genuinely believe that there is no malice in this drifting, no calculated actions or intentional manoeuvres. Their estrangement and need to create distance stems from their own internal difficulties, their own failure to understand, and their own inability to comprehend or accept. The reality is that some people cannot deal with your new reality, or maybe just don’t want too.
The irony is that in this current situation the smallest things can mean the most and speak the loudest. A text is so simple yet can provide a light at the end of the tunnel. Along the same thought, the act of doing nothing rings even louder.
After giving this a lot of thought I truly believe that those that have fallen by the wayside, those that have left, do not have a bad heart. I’ve tried to rationalise their actions so many times; maybe they are too busy, maybe its too reminiscent to something in their past or maybe they just don’t understand? Ultimately, whatever the reason, it doesn’t matter. It all boils down to the same, unfortunate, simple truth. They’ve gone.
Irrespective of their own rationale, the thing that has helped me come to terms with these losses is to practice understanding, acceptance and gratitude.
Understand that not everyone can handle the same challenges (we’re all different at the end of the day). Some of those that are now missing had been key players in the my pre-EDS life and therefore are prevalent features in the memories of my past; but thats what they are – they’re in the past.
Accepting that so much of what I’m going through is incurable and maybe the people that have left are not strong enough to watch my ups and downs and walk this wobbly road with me. However, thats not my fault and to harbour resentments and bitterness towards them will only make my pain, my physical and emotional situation worse. Many of us with chronic conditions refer to our diminishing energy levels as spoons; every task costs a spoon and so they’re very precious. Therefore, I’ve come to the harsh realisation that those people who arn’t strong enough to stand up and be counted are also not deserving of one of my spoons, time or energy.
Gratitude that whilst the unsettling and difficult truth is that my future can no longer be a repetition of my past because I’ve been hit with one big, life altering tsunami of an illness. However, I’m eternally grateful to those that are weathering this storm with me. They are worth a million times than those that have been washed away.
Whilst its infuriating, disappointing and damn heartbreaking to be forgotten and left by those who you were so connected with I have also been beyond amazed by other relationships in my life and continue to be amazed as they keep sticking by me. I’ve also seen new, unexpected people enter my life throughout this journey who now hold such a special place in my heart.
Gone is my ‘forest of friends’, and in its place is a blooming vegetable patch filled with those who I’m certain arn’t going anywhere. As one of my little spuds told me; you have friends for a reason, friends for a season and friends for a lifetime’
I may not know what my future holds or even where I’ll be in 5 years time . But I know I’ll keep fighting and I am confident that those who have stuck by me for this long, will be in it – whatever form it may take. Im certain they’re not just here for the next chapter, but the whole novel – And those are the ones who I’m going to focus my energy on and keep fighting for.
Upon starting this blog, I realised that it shouldn’t be only my voice that gets heard. After all, illness is not something that can be put in a box and effect a chosen few.
Whether we like it or not, it’s something that has ripple effects on all those around you. Therefore, I think it is important to allow them to have a voice too.
This is a note from my grandma, which whilst was hard to read, it was an important step into understanding how ‘the trifecta’ is affecting my family.
It also proved as a pertinent reminder that no one has to fight illness alone.
“What children need most are the essentials that grandparents provide in abundance. They give unconditional love, kindness, patience, humour, comfort, lessons in life. And, most importantly, cookies.”
Rudolph Giuliani
As a grandmother how
do I feel?
The first word that comes to mind is devastated.
My beautiful granddaughter arrived home from a lovely holiday in Croatia where she had spent the week island hopping along the Dalmatian Coast with her best friend from University. She came to see me for a coffee that morning to tell me tales of their travels, looking tanned, happy, full of life – My Sammy.
After some tea and biscuits and several giggles she left to go to the station. She was off into London for an interview, hopefully starting on to next step of her bright future. She phoned me on her way home, another success – I felt so proud.
That night our world fell apart.
I had a call at 10pm saying Sammy was in an ambulance going
to hospital having collapsed and unable to move her limbs, shaking and her
heartbeat and pulse far too low.
She was in hospital for 3 days. However, like the granddaughter i knew, down to sheer determination, she was walking with crutches – adamant she was coming home to us.
Unfortunately, her health did not improve over the weekend and by Sunday she was taken back to hospital for another 5 days. After seeing neurologists, cardiologists and physiotherapists, to name a few, she still had no diagnosis.
I felt helpless.
Several weeks down the line, Sammy has seen so many specialists but there isn’t one putting all the tests together and saying this is what needs to be done – is she even getting the right help?
Finally, we were told her conditions is autonomic dysfunction, a chronic disease which means her final year at university has had to be delayed for at least a year, whilst she learns to adjust to her new life with it.
I wake up in the middle of the night so distressed thinking I’ve
had bad dream.
But this is for real and I feel so helpless.
I can’t bear seeing my granddaughter so poorly, unable to do
any of the things she had planned.
She has always loved her food so much and was always cooking. Now eating is such a problem, causing horrible pains. She still does cook for us, but is unable to eat most of it.
It is so hard to see her so thin and poorly, i feel like i’m watching her waste away.
Sport was always top of her agenda and yet, now she has so little energy.
She was always so full of life, the star of every show.
I miss Sammy being Sammy and the things we used to do together.
She is my wonderful granddaughter who loves to life to the full, i miss her brightness, her shining light.
My own daughter (her mother), who doesn’t leave her side for a moment is very positive but suffering terribly seeing her beloved daughter so poorly, which grieves me, because I can’t make things better.
I will never understand how this could happen overnight to a healthy, sporty 20-year-old. I know it is her will power alone that forces her to walk her dogs every morning and just act normal.
My husband died suddenly last year so there is one to cry or talk with, no hugs when I wake in the morning.
Sometimes I don’t want to get out of bed wondering what a new day will bring.
How I wish I could hug both my daughter and granddaughter and
make this all go away.
We are a strong family and however hard it is, we will call
on all our strength to fight his together – whatever it takes to get through
this nightmare very soon.
I am so proud of both of them.
I know with the love and support of her mum (my daughter), Sammy
will overcome her disabilities, but it will take courage and determination and
a long time.
Good luck my darling girl, keep on going. I’m so proud of you.
Food for thought after last weeks moment of hopelessness
Having a #houghtfulthursday
so were breaking up the perpetual posts of my face and food with a bit of
food for thought (terrible pun I know)
Anyway I came across this quote earlier (courtesy of Yung Pueblo) and couldn’t help but have one of those epiphany moments where you just think ‘okay yeah’ #realtalk. I felt very American teen movie / basic girl as I sat in Starbucks with my festive toffee nut latte and was like OMGGG SOOO TRUEEEE.
Anyways, once I’d finished laughing at myself I decided this was a sentiment I wanted to share as I think it something everyone needs to hear. (I know I did)
My forced time away from University and the literal pause on my life that is currently necessary has made me realise that it’s actually so much easier to focus on work, other projects and on others in general than it is to focus on yourself. It’s easier to absorb yourself in work and pop those turmoil’s and struggles into a little box to deal with later (or never).
The difficulty comes when they start to unrelentingly stare you straight in the face. So, for anyone out there who is struggling or feels like their world has come crashing down and they’re beginning to lose hope – I SO GET YOU!
Whilst I always try and turn negatives into positives, look on the bright side and see silver linings – the reality is that I do also know what it’s like to feel helpless, hopeless and completely defeated.
I know how it feels to be scared for the future, to be
scared to go to sleep for fear of what tomorrow might hold.
I’ve sat down and cried ‘why me’ and felt completely
helpless and utterly powerless over what is happening to my body, to my life.
In fact, I had one of those moments a few days ago myself. Following another ‘episode’ where the ambulance had to be called as my body just did its own thing… Without being tooooo TMI… for a few hours I had no control. The EDS ‘me’ had taken hold, causing convulsions and shaking, pulling my face into all sorts of ‘stroke like impersonation’s’, hyperventilating and then just nothing for a while. I was completely at theliberty of my own nervous system. I felt like a stranger in my own body, an unenthused spectator of a horror show with front row seats and no means to hit stop or leave #notideal.
After a few hours… once it had all subsided and I was back
‘in control’ (ish) of my own self again; I felt a sense helplessness settle as
I realised my recovery was not going as I had hoped.
However, I need to remember that I’m still healing and this quote
encompasses some of the many things that constitutes my long, windy, bumpy, emotional
rollercoaster of a road back to #rediscoveringhealthy.
Whist I continue to knock down experts’ doors seeking answers, I am learning to live in the midst of uncertainty and emotional chaos, so I can actually live this life.
Whilst it’s not always easy, through these challenge’s and difficulties I am learning how lucky I am, how strong I can be, but also what an amazing world we live in. I’m seeing strength and support that I never could’ve imagined and for that I am so grateful.
I’m not sharing this post to seek out pity or sympathy but in a small effort to reach out to anyone who is also currently dealing with the harsh realities that is this life #lifesabitch.
If there’s one life lesson I’ll always remember after this whirlwind is over it is that you are not walking this road alone, although I know how lonely these times can feel, there is always someone there – and for that I am eternally grateful.
Have a cracking Thursday team…and maybe try carve out some
time for a bit of self reflection.
Rediscovering Healthy 