What is perfection? It’s a word that we toss around like it weighs not a thing, when the reality is that’s a ball and chain dragging our mental health through the mud chasing after. I’m sure my own view of perfection is mighty different to yours! If it wasn’t then it would be a case of bottling up a potion or creating a word doc telling you what steps to follow to achieve perfection and selling it for a killing; I’d be able to have my own purpose built bungalow. No it’s different to all of us yet we all seek it.
It’s the little negative moments experienced that make us seek it. It’s the old man tutting and shaking his head repededly at me because he couldn’t push past my wheelchair easily. It’s the side eye and the sarcastic comments that are made by people who don’t understand ambulatory wheelchair users exist. It’s dislocating 15 times in one day and just having enough. It’s all these things and so much more that make us want to chase perfection.
The fog of insecurity in our brains full of thoughts like if I just weighed less, if I wasn’t chronically ill, if I wasn’t in my chair, if I was more like them; it’s all based on the negative moments and turned into insecurity and self doubt. It’s a weight that no one needs.
But chasing perfection is futile. It’s an unachievable concept. It’s time we move away from it. On that note can we bin chasing normal as well? Learn to love ourselves the way we are. Life would be boring if we were all the same. I know I would rather be my unique self than identical to every other person.
If you’ve been following my blog for a while, or if you’ve been here since the beginning, you’ll know that pacing (for many years) was like a swear word to me. The doctors threw it around a lot, really pressed the importance of it, but no-one really explained how to implement it properly into my life. I felt like I was being told to sit down and accept my fate of not being able to do anything, anymore. As someone who likes to be busy, I didn’t accept this instruction.
Don’t misunderstand me, I tried. I’d manage a few days of what I viewed as pacing and then I’d slip back into my old habits, trying to live a normal life of activity with no adjustments. The consequences of doing this was that I hit that ’empty spoon’ wall hard and often. Each time regretting it as I then took days to recuperate.
I’m currently coming towards the end of the 3 diplomas I’ve been studying, in Health, Wellness and Life Coaching – specialising in life management with chronic illnesses. I’ve loved the course itself but seeing the difference applying it to my daily life has had, has been amazing. It’s completely changed my understanding of pacing and therefore helped me to apply it to my life with ease.
Yesterday, for example, I was feeling much better than usual so I asked my son what activities he would like to do. I had already decided I would say yes to whatever he chose to do and would find a way to adapt it if needed. He asked to cook with me. So we got the soup maker out to eliminate the amount of cutting and hot heavy lifting of pans. He loved peeling the onion and garlic, cutting out the amount of herbs. It was a gentle session, sat down and full of laughter. I know energy filled days won’t always be here even when I’m 100% on track, but by pacing, asking for help more etc.it reduces how often flare ups will happen. It’s making a huge difference not just to how I’m coping physically but also to my mental health which has had a real boost.
The theme this year is ‘not all disabilities are visible’. This is stressing the fact that not every condition is immediately visible; according to the WHO report roughly two-thirds of people with a mental or neurological disorder will put off going to a doctor for help largely in part due to stigma, discrimination and neglect. As someone who has very much been on the receiving end of this trio when it comes to living with multiple neurological conditions, this comes as no surprise to me.
Looking at me as I am right now, curled up on the settee trying to not make to much noise so as to not wake the kids, you could be forgiven for not knowing I had a disability; even if your keen eyed and spotted my odd eyes you wouldn’t know that my sight was impacted and would be unlike to think too much about it. However even when you can spot my spasms or a dislocation, you cannot see my brain fog, my sensory loss, the neuropathic nerve pain, no one can see fatigue fight, the pain induced insomnia, the sixty odd dislocations a day and so much more.
I love talking with young children about my disabilities because they don’t hold back. “How does your chair work?” “Can you get upstairs?” “Do you have to put you your chair in the bath?” The look of fear on the parents faces as they worry that something not deemed politically correct may be asked is what I find disheartening. Without these beautiful minds being curious how can stigmas be fought against, broken down and normalised? This should be praised and encouraged. I appreciate that not everyone will want to be asked, but you’ll be surprised by how many people are more than happy to discuss these things.
Disabled people, whether the condition is visible or not, physical/mental/learning or otherwise are still people. Next time, pause, maybe ask a question, you could be amazed at how it opens your eyes.
I live with an elephant in the room; it comes with me wherever I go. Some people don’t mind the elephant, some have one of their own, others have a dislike for these elephants. It’s not always clear as to why. Maybe it’s worry, perhaps lack of understanding, and sometimes it’s ignorance.
Learning to accept my elephant of many names was a task that took great strength and many many years of learning to love myself all over again. I’m a sensitive soul; when my elephant upsets others it’s hard not to be offended. But I cannot change what I am, nor the diagnoses attached to me, or the symptoms that are ever present. Therefore the elephant is always in the corner. Sometimes small, sometimes big, sometimes putting on quite the performance.
However, I am who I am because of the path my life has taken. Disability has taught me a lot about myself, and it has opened my eyes to the need for self advocacy in a world that is a far cry from being disability friendly. The next time you are in a room with an elephant, address it, embrace it. Disability elephants are not scary things.
It’s a painsomnia night so I thought I would share with you all something that I’ve been coming back to frequently recently. Personally I’m a very sensitive, emotional person; now some may view that as a bad thing, others a good thing, some of you will be neutral. I can see the pros and cons, but it’s what makes me me, so yes I may cry buckets everytime we watch certain episodes of Vikings, or The Lion King but i’ll also laugh myself to stitches five minutes later. It’s a rollercoaster of life. It’s real, honest and truth.
So why do I, and I know many others with chronic illness will be able to identify with this, go on autopilot everytime a doctor, family member or friend asks after us? You know the drill, you walk into the drs room the doctor greets you and asks how you are before you get down to the nitty gritty. It’s a formality, so like a healthy person you respond with I’m good thanks, and you? It’s ridiculous! Why is it so hard to say you know what I’m actually not great at the moment and I need some help.
I forced myself to do this yesterday. I could hear the usual auto response slipping out my mouth, so I caught myself, took a breath, looked the doctor in the eye and said I’m pretty awful and I don’t know what to do. Now saying that wasn’t easy but boy did the relief for sharing the burden feel good. Making that choice to let the facade of I can cope with everything slip for a moment to ask for help took an incredible amount of inner strength and it’s something I’m going to practice doing more often. Vulnerability is not something to view in a negative light, in fact it allows others to reach out and see if they can improve your situation. Sometimes just talking things over can make a difference.
So just pause for a moment and think; are you like me and guilty of putting walls up? Is it worth flexing your inner strength and letting that vulnerability show? Let me know what you decide to do!
Being diagnosed with a chronic illness, for the majority of people, stirs up a lot of emotions. Its a process we all go through at different rates, and there is no wrong or right way about it. With illness there is often a sense of loss of normality, for every individual that’s different depending on your condition and what symptoms your experiencing. I really wished I had been given a heads up back when I first got ill about the grief I would feel, for the profound sense of loss I would experience. I fell into a really deep depression and for a long time was in denial thinking that somehow I was just going to wake up one day and be able to return to my Midwifery degree. If you go back to some of the first blog posts I ever wrote on this site it’s really quite easy to pinpoint which part of the Grief cycle I was in.
I turned to a combination of Cognitive Behavioural Therapy and Mindful Meditation to help me come to terms with my health and my new reality. This was a good mix and after a fair amount of time had passed I reached acceptance. Now don’t get me wrong I still had blips, a friend would announce they had decided to train as a midwife, or I’d find my old coursework in a clear-out and I’d slip mentally for a few days, but I would always be able to pick myself back up again. However what I didn’t expect, and again I wish I had been warned that this was a possibility, was that with each new diagnosis that got slapped on to me, and with every new symptom that became clear was on a downward path and here to stay; that I would find myself having to repeat the Grief cycle again.
It of course make sense that you would have to. You are after all experiencing a loss of sorts again. Mentally and physically its challenging and draining. It is natural for you to grieve, to be angry, to want to challenge what your going through until you reach some sort of acceptance. I’ve found myself going through this again recently. I’m on my 7th bout of Optic Neuritis, along with loss of all sensation in my right leg; I have next to no use of it currently. My local neuro team suspect MS but are investigating fully for all demylation diseases to ensure nothing is missed. Finding myself once again with more limitations, really sent me spinning. I found myself asking why over and over again. I felt like I needed an explanation because it seemed insane to have yet another condition added to my already extensive list. I’ve not reached acceptance yet, but I’m remembering my mindfulness and I’m defiantly moving through the stages quicker this time.
If I had to give one tip to someone newly diagnosed with a chronic illness it would simply be to kind to yourself and to remember to practice self care. Your allowed to grieve, its natural, don’t beat yourself up. Make sure you don’t bottle your emotions up, confide in someone you trust. you will feel better for it.
September 2011 I started at Anglia Ruskin University in Chelmsford on a Midwifery degree. It was the most amazing experience of my life. July 24th 2012 I developed Oromandibular Dystonia and was put on intermission for a year. Today I was withdrawn from university on debilitating health grounds. You have no idea how much I wish to pull my little Dystonia alien out and scream at him.
My university was extremely kind about it all and I hope that in a few years time if I am well enough that I can reapply to do my Midwifery degree. In the meantime I plan on doing a Level 3 in Anatomy and physiology, and once I’ve finished that I will see where I go from there. I have known for a few weeks that this conversation with my uni would have to happen, and have dreaded it. I had hoped that as I knew it would happen that it would not be too bad however the reality is that I am extremely upset and want to scream at the doctors until they invent a cure.
I struggle to understand how it is ok for Dystonia to upturn, stomp all over and turn inside out our lives. I struggle to comprehend why sufferers then have to fight for treatment and care. I struggle to accept the reality I’m living. I won’t ever accept it, because none of this is ok. I know one day a cure will be found and I hope it shall be in this lifetime so that I can reapply for uni.
On a brighter note my body is not too bad today which is nice and a DVD called The Host which I have excitedly been waiting for has arrived – It is a fantastic book and an amazing film. I plan on doing nothing for the rest of the day other the watch The Host again (even though I only finished watching it ten mins ago), and then I am going to indulge myself in a bit of 50 shades freed as it’s an easy read.
Tomorrow will seem brighter, and I will get there eventually, one way or another.
Having Dystonia means that no day will be the same as any other. Some days may be a good day and others are not so good. This is a fact I have readily accepted. However what I was not prepared for was the spasms that would give everyone around me a shock yet provide amusement simultaneously.
The other day I went to put a knife away and all of a sudden the little dystonia alien decided to act up. Before anyone could help me, the spasm had caused the knife to be flung out of hand, clattering on the ground at the other side of the room. This incident could be one to fear, knife throwing after all is rather dangerous, however all of us could not help ourselves, we all burst into laughter. It was such a random and sudden incident that was shocking yet amusing. Then the next day when my body decided to spasm I sent a plastic cup full of juice flying across the room, making a mess of myself and the floor, but again none of us could help ourselves we had to laugh.
The way I see it is that you have to very clear cut options with dystonia, you can either be angry and become reclusive and isolate yourself so as to avoid potentially embarrassing situations or you can accept that this is what your body is doing, accept the fact you will have good and bad days, yet be able to laugh at the situation, find the positive side to life. After all it is widely known that laughter is the best medicine.
Necessary cookies are absolutely essential for the website to function properly. This category only includes cookies that ensures basic functionalities and security features of the website. These cookies do not store any personal information.
Any cookies that may not be particularly necessary for the website to function and is used specifically to collect user personal data via analytics, ads, other embedded contents are termed as non-necessary cookies. It is mandatory to procure user consent prior to running these cookies on your website.