*Trigger Warning* - This is a very honest, raw and real account of my lived experience with disability and suicidal thoughts which will be upsetting to some. I've written it to give an insight to difficulties experienced and the thought process behind why I experience suicidal thoughts. This is solely based on my life and as such, won't be the same for everyone.
It is the 10th July, a week after an incredibly busy and humbling period, which saw me being involved with: The Baton of Hope suicide prevention initiative and a Disability Expo, ran by people with disabilities for people with disabilities and their families. I spoke at both events as someone with lived experience of: attempting suicide, living with suicidal thoughts, a spinal injury and Complex Post Traumatic Stress Disorder CPTSD, whilst also being the Baton Bearer who handed it over to Red Bull Racings' Daniel Ricciardo and experienced a very special, surreal moment, when I overtook the F1 car and for the first time in a long while, I was actually glad to be alive!
You would have thought it'd leave me on a high for quite a while right? Unfortunately, my reality meant the whole week left me exhausted and experiencing extremely high levels of pain. I experience pain, every minute of every day, though the levels fluctuate and at times I can manage it better than others, but when I push too much and overdo things, the pain can be incredibly debilitating and I'm left laying on my mobility bed in agony, spaced out on opioid medication and totally alone, which is when the thoughts of suicide come in.
However, over the years I've learned alot about my mind, body, health conditions and symptoms, therefore I was fully expectant of this happening and had prewarned my amazing carer, those I tend to communicate with most and prepared myself mentally, to minimise the impact and how it might affect those in my life; it's important for us to try and remember how our disability/health, actions, behaviour and inactions can hurt or upset people who love us and even our connections/followers on social media! Something I've not been the best at in the past and have worked hard to be more mindful of, it's not just about me and my emotional, mental and physical pain.
The following is an example of the thoughts I experience 3 or 4 times most weeks. Please don't read it if you're not in the right place mentally or easily upset and I don't want anyone to feel like they have to reach out, nor do I care whether you agree with what I say or not, this is my truth, my life, my lived experience and I've still got work to do….
I'm feeling totally drained, exhausted, weak and lost. Even the hopes I hold dear and truly believe in, the purpose I have which I know helps others, aren't enough to battle the growing darkness which is building within, like a sunny day giving way at sunset, but without the hope of it rising again. Instead a void grows, seeking to consume any hope or possibility, engulfing and extinguishing all remaining light, leaving me broken and alone in the dark, I've nothing else to give and have no more fight. I know what you'll say, I've said it myself to hundreds of others, but you don't have to exist in a life filled with pain and being so alone, you've no right to tell me what I should do or judge how I feel based upon your own emotions and perspectives of the world, as the only reality which counts is the one I am experiencing and the cold, hard truth is, my disability will never go, it'll only ever get worse and I'm the only one who can move things on from here. I just don't know right now.
On average two days a week are spent laid up in agony.
It's now August, the past few weeks I've forced myself to rest up, almost giving myself permission, and accepting, I need time to recover physically and mentally. This has been made somewhat easier by it being summer and people going away, as I have noticed a considerable reduction in emails and as such, I don't feel the pressure to respond or even arrange meetings etc because if others are working, then I have to be working too!? I have even managed to put social media on the back seat (ish), though the problem is I know their algorithms will make me pay for this in the long run and when I go back to it again, it'll take a while for my posts to begin achieving the "reach" I was at initially. This might not seem a problem to some of you and I've been told on numerous occasions not to focus on how many people I reach, but when you're self-employed and there's pressure to achieve high numbers of followers and reach, so I can be deemed worthy and have a value, it's really difficult to not be focused on it.
Now when I say, "I've forced myself to rest up", this doesn't mean I have exactly been "resting". Being disabled is exhausting, I'm not referring to the specific condition/s and associated symptoms, it's everything you have to do to manage the paperwork involved and you are constantly being made to prove you are disabled, with the wide range of organisations and departments suspicious of you from the very beginning, even if they've been aware of you for a while. Then there's the treatments and check-ups you need attend to help manage your conditions, in addition to the support services, which for me consists of: PIP, War Pension, Blue Badge, Disability Benefits, Universal Credit, Housing, Motability, Health Appointments - Physio, Therapist, GP, Osteopath, OT, Spinal Surgeon, Counsellor.
Don't get me wrong, we are extremely lucky in the UK to have such supports, especially when compared to other European countries, and if I didn't receive the financial support I am fairly confident I'd have acted on my thoughts by now. But, whilst we are luckier than others, being disabled is still like having a full time job at times, which is part of the reason why approximately 4million of the unemployed are made up from people with disabilities, and is why I volunteer my time to, Champion "Ability Over Disability", Campaign for "Survivors of Suicide" and Advocate for Disability, as I'm not here for handouts or to live off the state and between my conditions and everything I've mentioned, there's no way I'd even have the time to work for an employer!
Speaking at the Baton of Hope conference in Milton Keynes.
The first two weeks of August were mostly like a "typical" period for me, though part of the problem with having physical and mental health conditions is, there's not really a "typical" day or week and so you assess each day in the moment, to see what you can/can't do and if there's something you want to do or have to, I carry out a mini "risk v reward" assessment and gauge whether the risk of my being in a lot more pain, is actually worth the reward I'd achieve by doing whatever it is.
I have noticed there's been a negative change in me mentally. I'm never usually short of something to say and have a huge passion for informing and inspiring people on disability and suicide, whilst trying to give hope wherever I can, hell, it makes up a big part of my purpose which keeps me going, but the past two weeks I've had nothing. I think it's actually been like this for the past six weeks or so, but as I was doing my best to rest up, I figured it was simply down to my mind switching off and I know many of you will say it happens to everyone etc etc but when you've got a disability/health condition, you become very attuned to your mind/body and because you're managing the associated symptoms daily, you immediately pick up on different symptoms.
It's consisted of feeling really lost, void of fight, belief or motivation and whilst you might well see me post about getting out, doing some filming and cycling, this shouldn't always be perceived as my being over the dark times. It's me doing what I can, when I can, and is obviously a good thing, but these need to outweigh the bad times and provide a sense of fulfilment which enables and empowers you to not only battle the darkness, but overcome it and begin building a happier, more fulfilled life, which for me would mean; not being at risk of homelessness (yup I'm currently at risk), having an accessible home which doesn't make you more disabled, building a community where I live (there's very little where I currently live), seeing my daughter and rebuilding our relationship (been 8yrs now), beginning my adventures with Rock Climber and falling in love.
This is when I'm at my happiest, getting out adventuring.
This brings you to today, 1200hrs Monday 14th August '23. Pain woke me around 0430hrs after roughly 4/5hrs of sleep, like most days, then after doing my morning routine I assess how bad the pain is, where I am mentally and what the weather is doing, as all these things impact what I can/can't do. The pain is 7/10, I'm not too bad mentally (for me anyway) though I have been really low lately and with the weather being mostly wet, in addition to the pain being a 7 (anything above a 6 is dodgy for me to go out unless I really need to) so I decided it's the right time for me to write this. I hope you will read it as an informative insight, the sharing of someone's story, their lived experiences with disability and suicide, their truth, my truth.
I don't know what tomorrow will bring, I don't know how long I can continue fighting for or whether I'll achieve the happier, more fulfilled life I referred to above and right now I'm not even sure whether I have it in me to do any of it. But, what I DO know, my intention is to fight for as long as I can and live my purpose to the very best of my ability and maybe, just maybe, I can continue to make a difference to mine and others lives along the way xx
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