Recently I have been struggling with the hindering symptoms which encompass my disability, and I feel like putting the confusion, frustration, and uncertainty down upon ‘paper’, I can express how I’m feeling in a way which is both cathartic, and hopefully relatable to those of you out there who are in a similar situation.
I’m tired. Emotionally fatigued but physically exhausted, and no matter how much sleep I get, no matter what I eat, how much I do in a day, I am still physically exhausted the next day. My body is not deprived of any vital nutrients, yet of cells which function properly. Which is a bit fucking inconvenient at the best of times, eh(?) It’s inescapable and I understand that and what little I can do to help myself through difficult patches; but after years of battling this blasted illness, I’ve come to the slow realisation that it’s permanent. However I had made my peace with this outlook, I had embraced it and made for leniency and understanding regarding my limitations, and learning to accept what I cannot do, and learn to flourish with what I can.
Yet now that things have slowly become increasingly difficult, my limits are now so suffocating at times that carrying out basic self-care and personal hygiene tasks are unable to be completed by myself alone. For some time I have required a carer, for many aspects of my life, for activities such as dressing, washing, making food or getting a drink, giving me my medication on time etc. However, something I never needed help with was my imagination and my ability to learn. Although now I’m growing concerned about my ability to think clearly, or at least without much effort.
It feels like my brain fog has completely closed in as if a full-blown storm is about to take effect, and the one thing that I felt was mostly unaffected by my disability was my ability to learn. I was one of the few disabled students in my year group and achieved considerably well. The sense of achievement was huge and remains to be, and despite knowing that my achievements aren’t to be lived up to but to be pursued with the same determination as the last, I cannot relate the weight of academic achievement to being able to get into a chair without needing a bloody rest break halfway through(!)
Cognitive dissonance, when the information you know to be true directly contradicts learned behaviours or perceptions. My learned cognition is that due to my physical impairments, my mental abilities compensated for what I was unable to do in other areas of my life to feel the sense of achievement and fulfilment out of my day than I did prior to becoming disabled. Otherwise, I wouldn’t be self-actualising and making positive steps in multiple areas of my life to benefit my future and my wellbeing. I wouldn’t be able to feel like me, because my creativity and imagination was being exercised in ways which I was passionate about, with subjects I never sickened of. But now the subjects I once found comfort in are becoming a maze for my brain to navigate. It’s almost as if I was driving a 4×4 and now I’m navigating a Little Tykes piece of plastic.
Yet there’s still an essence of myself encased, my identity hasn’t been obscured – but my functioning has. Any of you guys who have chronic fatigue or suffered similar impairments will get what I mean. You’re aware of you and you know yourself, but the basic need to adapt never fails to emerge, it cannot be suppressed. Yet there’s only a certain degree to which you can adapt, and once you’ve reached that the energy which you managed to scrape together to get to that point just dissolves with a dehumanising flare.
My dream is to become a psychologist and pursue a profession in mental health treatment, and support and to achieve this I shall need to complete an undergraduate degree, and a master’s degree at the least – which at one point I viewed as a challenge despite my insecurities about how I would adapt to university workloads. But now with how poorly I am, and how utterly done in I am after as little as 40 minutes of revision or working on a practice exam question – I am beginning to question whether my dreams will be achievable if my condition doesn’t become more manageable, or my chronic fatigue keeps biting me in the ass.
Yet, on the other hand, I’m not going to give up without a bloody fight (which won’t take much I bruise like a peach!) I’m not going to wish I had given it my best shot and pursued my dreams in case I was able to succeed despite the odds. Although it’s difficult to feel entirely optimistic when you’re struggling to stay awake at 2pm in the afternoon, or you don’t feel well enough to come downstairs on your stairlift to have your tea (which is already made for you).
It’s all well and good for someone to say “one day at a time” – however when you have the fear of feeling so poorly for the rest of your life whilst also trying to achieve your dreams which you know you’re capable of in many respects, yet an illness you cannot control could fully cockblock you – is pretty darn distracting. I try my utmost best to focus on the positive aspects of the future and the silver linings of every negative situation, but right now I’m experiencing a period of fucking exhaustion. My body and brain are just like a screaming child, and you don’t know how to get it to stop. If you were to ignore it, you would suffer the consequences. Yet despite trying to accommodate all aspects of my condition, the increasing difficulty is both exhausting and of little benefit.
Recently I have felt that my body is no longer any aspect of my identity because I am not the incontinence, the scarring, the acne, the inability to walk, the bruises, the scrapes, the sick. Yet my mind seems to have split into, the sick and the aware. Brain fog but being completely aware of your inability to recall information or function properly.
My emotions and my pain are still raw, yet I know that given time I shall be able to figure out how to adjust in a way which suits me. But I wanted to share this because despite my feelings being labelled as ‘rational’ for the simple fact that knowing people are going through similar things can help ease the feeling of loneliness and isolation associated with disability.
So with this being said, I would like to offer this opportunity to reply via a comment or on the Bud to Bloom Instagram page – to share your struggles with mental health problems or disability, and begin a conversation.
It will get better but remember it’s okay to feel like this. Below I have included some links to support sites relating to disability and mental illness if your struggling, want someone to talk to, or need some advice.
You’ve got this boo,
- Disability Rights UK
- Advice Local
- NHS Disability Information
- Samaritans Contact Us
- Support Line for Disabilities
- NHS Mental Health Support Lines