I swear it gets harder and harder to write at the moment. That’s because I don’t want to fill your feeds with copious amounts of bullshit on how this hurts or something is shit blah blah blah. We are all in pain and turmoil this year.
I really don’t know what I have learnt this year. It’s a completely random and mixed bag.
I have been SO stressed. So stressed that I cannot even bear to sit down and write and tell you what’s going on as it always feels like such drama. Trying to find a job, any job, has been hell. There are at least 50-60 applications for minimum wage work and employers are really not up to date with disability rights in employment unless they are absolutely made to be. The amount of hoops I have had to jump through just for an interview and then the companies don’t even have the decency to treat you like a human being and call you to at least let you know whether you have it. They don’t care as they’re not struggling to employ anyone so we are all disposable at the moment.
It’s been hard getting work. Without the motivation of work, I haven’t had much motivation for my allotment like I normally would but have still been regularly going. Doing bits and pieces.
This week, I cleared three beds and dug them over in the space of two days. It wasn’t really pacing like I have been taught to do, and I suffered majorly the day after too.
Fibromyalgia is such a ball ache. As is EDS. I scalded my hands the other day from just losing grip of a hot water bottle and a kettle at the same time and it does make me feel like a bit of a twat. It adds to the ‘you’re always hurting yourself!’, ‘you’re so clumsy’, ‘there’s always something wrong!’ comments that I receive on a regular basis. Another one I get is that I’m lazy. It’s pretty upsetting as I literally work myself to the max and mostly because of doubtful and foul comments; but I do need to be looking after me a little more.
So I have myself a job now. I haven’t started but I have sent off my checks and paperwork with eagerness.
Since Coronavirus hit, I realise that I have been through so much trauma already in my life and it’s HARD. I’ve seen technology boom with things that weren’t even imaginable when I was a kid. I’ve had to learn and adapt to a fast changing world. I had an adventurous childhood. I’ve witnessed terrorist attacks, both in life and on TV. I’ve gone through several recessions, rent is basically unaffordable, I’ve become chronically unwell, I’ve suffered the absolute worst of humanity in some cases (especially this year), have been sexually assaulted and then let down by the Police force who put me in more harm and allowed it to happen twice. I’ve been hung over a bridge at knife point when I was only 9, by a girl a year older than me, been beaten the shit out of, severely bullied in both schools to the point where I’ve had bleach in my eyes and someone burnt my hair off with a Brunson burner. It’s really difficult to grow up in this world. A world where the generations previous to us, have not cared or invested in future generations. A world where we are now crying out for simple justices, fair and equal pay, and even a dignified death.
The beginning of Coronavirus brought us altogether in this fake sort of ‘harmony’. People were out at their doors and clapping the NHS, but still having house parties, guests and playing with multiple families in the streets.
Hypocrisy bloody everywhere and people in fear just trying to survive. We’ve become much more aggressive towards human beings. Posting pictures of people on communal Facebook groups for not wearing masks, fighting to stockpile 300 unnecessary rolls of toilet paper and leaving our poorest and most vulnerable people without. I was even quoted on Twitter by a ‘famous’ gardener that I was ‘fighting for the little people’ in a derogatory manner – just because his words were so entitled about the poor having to use shops with cash when they opened. Card transactions only everywhere seems fine for everyone right? Not everyone has contactless… or money on their card. Some only had cash at the time. But it’s a 3 hour queue with a 2 year old at the bank to even be able to deposit your money in so you can use your card – which is just not right. It excluded a whole class of people that were forgotten.
We’ve mostly had online deliveries since I became disabled – now again not available. I live in a first floor flat (where the council found suitable to house me), with no lift and no disabled access. It’s been exhausting going out to food shop, especially as no one really cares about keeping their distance. There is certainly no 2m distancing from others when I’m out. I have been challenged about not being able to stand the pain the face masks give me, to the point where a man in a shop (not police) asked for my medical history. So I asked him whether he’d checked himself recently for testicular cancer and whether or not he knew how to do it because I could show him with the front of my boot. He seemed completely baffled at why I asked – but he obviously was a medically trained shop assistant right? So questions like that shouldn’t be offensive if he’s asking me for the same sort of details. Bearing in mind I was wearing an exemption lanyard, badge and bracelet and I do take it very, very seriously.
I am fed up of the scaremongering media. They’re absolute parasites in this world and they’ve no care on the effects of human beings due to their stories – mainly because they have no one to answer to. A great opportunity for everyone to all come together and we’re pushing someone’s 98 year old Nan over in Sainsbury’s to get some flour that you haven’t even used in 4 years in any of your damn cooking.
I’m not writing this to moan. I am writing this because the kindness in my heart has somewhat diminished. I’m not focussing on all the bad experiences that I have had; I am just struggling to find the kindness in humanity that I know is there and really struggling without my health and mental health services.
What world am I leaving behind in the long run for my child? At the moment, I really don’t know. But I do have that one life and opportunity to make a difference somewhere on this lonely little planet.
Things will always be shit at some stage. I’ve found the world an extremely difficult place, even more so since becoming disabled. I work through my mindfulness and invest the spare time I have in gardening, which really does give me pure joy but this experience has probably changed me for life.
Taking some time to process and reflect isn’t a bad thing at all. I am just so tired and exhausted from the constant fear and trauma which has been a theme over the last 33 years. At what point does it stop? At what point does someone stand up and say that something isn’t right?
I am also exhausted from people abusing my kindness. I wear it on my sleeve. I AM a nice person and I just seem to be surrounded by people who always want something from me or are such compulsive liars, that they believe themselves. People who mimic my disabilities for a free ride on the benefits train. Do you think I WANT to live like this? Do you think I want to scald myself regularly or spectacularly fall down in public? Do you think that I want to feel stupid pain in stupid places that makes me so exhausted that I can’t get out of bed just because I did a couple of hours of digging? Do you think I want to infect my body with radiation and scans? Do you think I WANT surgery where they remove most part of my face and now it swells up every damn day and I can’t swim underwater anymore? I am just frustrated as after going through this, all I want to do is help other people but I feel like I am in need of a little help myself and I have absolutely no idea what. I have even had someone recently LIE to me about her son having autism just for attention and because I did something kind for another boy with autism (with some help). All because they wanted to jump on the abusive opportunity to scam me out of some gardening tools that she could have bought for her own child herself. Where is the shame? Where is the humility? Who raises their kid, telling them they have a condition that they don’t have? It makes me SO angry as regardless of whether that awesome kid had any condition, I would have helped him. Unfortunately, due to the manipulation of his parent, I couldn’t go through with spending the time regularly with him to teach him gardening (bearing in mind his mother has her own allotment). I just feel like the manipulation is just around everywhere. You have certain people who genuinely do love you but to have someone know you so that they knew what to say to the rheumatologist for a fake diagnosis, is not cool. Having someone lie to you about a condition that their child doesn’t have, just SHITS on all the parents who DO have children with conditions or autism and the amount of work that goes into it.
I want to help. I want to meet more amazing people who genuinely want to meet me too. I want to spend my whole days outside, showing people how glorious nature is. Whilst it’s not an instant cure; it is an opportunity to sit and be mindful. Sort through the shit that is CONSTANTLY buzzing through my head. Without my mental health services, I am really struggling. Without my physiotherapy and hydrotherapy sessions, I am struggling. Without money, I am struggling.
My mind has been CONSTANTLY working and last night I feel like I finally slept and some weight had been lifted when I was offered a permanent job.
I am just physically and mentally exhausted from carrying all this weight. I will find my spark again soon I hope. It’s my birthday on Friday and I always suffer this time of year. My friend died on my birthday after a night out we’d gone on for my birthday. I always carry that with me and his face will always pop up in my head. I miss him so much.
It’s also just so lonely here without any family too. I don’t ever see my brother as he lives his own life and my parents live in Hampshire and only ever want to see me if I have my son with me.
The only solace I have found really is with my friends and gardeners on twitter who see the world from a different perspective. I am struggling with so many demons but you all make me feel so welcome and are so kind and knowledgable. To the point where I am suspicious but I can’t wait for my invite into it’s cult. Oh shit… I’m already a member.
Thank you to listening to me. I just wanted to write about why things have been so difficult for me. You never ever know what is going on with someone and I still try to smile but my heart is just not really in it. And no, I don’t need anymore tweets telling me I am up and down like a yo-yo. I’ll block you next time. It’s just nice to talk to people that I think will at least will understand, sympathise or empathise to some point. I wasn’t born with a silver spoon in my mouth, I swear a lot, I am emotional because I am a human being, and I’ve no posh qualifications to brag about. But do you know what…? None of that shit actually matters! I’ve (somehow) kept a roof over my head, provided for my family with my allotment in more ways than I could have known, connected with amazing people and have made amazing relationships and learnt so many beautiful things along the way in these last couple of years.
So thank you for listening, my wonderful gardening therapists. Without my hospital services, I really am at a bit of a loss but things are finally moving forwards and you have been such an inspiration and support.