Sickness & Homelessness.

I genuinely loathe this house.

The one thing I am grateful for right now is that, unlike me, my son actually has some immunity and hasn’t been affected by the worst aspects of this so-called ‘home’. Of course, we’re hyper-vigilant about keeping his room free of the mould that’s plaguing the rest of the house. My room is the worst; there’s just no way to cope with it.

I should explain.

We knew when we moved in that something was too good to be true. This house is genuinely huge – our living room has 14ft high ceilings (no, we can’t change the lightbulbs!), it’s about 24ft long by 16ft wide, and all of the bedrooms are a generous size. The kitchen has a pantry and is sizeable – the master bedroom, my bedroom, has an en suite and enough room for a kingsize bed – four times over, at least. So, yes, we knew something was wrong – especially when we were told not to open the door at the end of the hall, which led into the attic.

Given that the handle was broken, we thought maybe it was just a pain in the ass to get into and didn’t think too much about it. However, when the ‘one month, tops’ repair of the patio door (which hasn’t closed in 2 years now) stretched on to 6 months, 8 months.. we began to get antsy. There was a huge sideboard against the back wall of my bedroom, and I finally figured out how to take it apart so we could move it into a more appropriate room. As soon as it was gone, I noticed a damp patch on the wall, so I pressed on it gently, not really putting much pressure on it, and it crumbled. I’m not joking. The hole just seemed to get bigger and bigger, and this soil-like substance poured out of it. It literally just looks like brown soil (no, it doesn’t resemble asbestos). I was so shocked, it took me three whole minutes to decide to force my way into the door at the end of the hall.

So, flathead screwdriver in hand, I pried open the latch and got that door open, then climbed a rickety wooden set of ladders I found in there (we didn’t have any), only to discover a hidden window we’d never thought much of from the outside – this window was held shut by a piece of wood stuck on one of the planks in the attic. A bit of wood!

Add to this the fact that the landlord had been ignoring our downstairs neighbour in requests to fix the leaking roof, which he’d found someone willing to do it for next to nothing. Needless to say, we were hopping mad.

Then, our landlord stopped paying the mortgage. His registration as a landlord was cancelled, our Housing Benefit was stopped entirely. Messages to the man were met by assurances it’d all be sorted soon, which degenerated into ‘none of my other tenants are having problems’ (which had to be BS). Then, he stopped answering.

For months, we heard nothing, and I won’t lie, we became complacent. We didn’t think about it, and that was an idiotic move on our part. Right around my birthday, we were hit by a notice of eviction in 16 days. We fought tooth and nail to buy more time, time to raise money, to get out – we even found a house. The woman assured us we’d hear back from her regarding the landlord’s opinion on pets, but the call never came. We called her, she said she hadn’t heard from him yet – and then bam,  it was gone. Right as we had the first part of the money, it was gone.

My son’s birthday was fast approaching, and we had no choice but to pull the money we had personally invested in the housing to give him some semblance of a birthday, even if it was just a penny-pinched meal and a movie, plus a couple of presents. He got to see his Grandad the day after, and I know that meant something to him.

Thankfully now we have no further expenses until September, so I can put my money back into the pot. Heather also got sorted on JSA (though she should be on ESA – appeals are a bitch) so she has money coming in, and she luckily has a very fair advisor. They’re a rarity.

So, we can sort the money.

 

What I AM worried about, though, is the irreparable damage this house may be doing to our health. Lisha appears to have developed asthma, and I’ve had a serious illness which has caused my throat to close up, mucus to overproduce and has made me throw up repeatedly. I can’t eat things like chocolate, so Easter hasn’t been much personal fun, other than watching my son hunt down eggs. I basically can’t stomach anything real dairy, and not because I’m lactose intolerant. When I breathe, my throat rasps – I’m almost certain I have a vocal chord disorder (my dad has the same/a very similar thing, so genetics may be in play here). If this is the case, years of asthma drugs may have done me more damage than good.

I have my medical notes, and I have to fight them on some of the absolute conjecture they’ve  put in, and insert addendums regarding ‘yellow flags’ – these were put in because they noted I can sit still without pain (seemingly) but become stiff and sore when touched and manipulated – they marked them as ‘pain avoidance’. This is easily explained by my allodynia. I do sit still, but only because I’ve long since given up on the notion that moving is going to do anything to alleviate particular pains, and I tense up because allodynia is by its very nature touch inhibiting.

Definition of allodynia

1. :  pain resulting from a stimulus (such as a light touch of the skin) which would not normally provoke pain; also:  a condition marked by such pain

 

Oh, and just because we’re at the definition stage of things – here’s another.

Definition of fibromyalgia

1. :  a chronic disorder characterised by widespread pain, tenderness, and stiffness of muscles and associated connective tissue structures that is typically accompanied by fatigue, headache, and sleep disturbances

 

That’s what I have. They have to write it that vaguely because fibromyalgia isn’t the same for one person as it is to another. It’s a fluctuating condition, which means that sometimes sitting as still as possible is the only way to prevent another stab of pain from passing through you. In my early days pre-diagnosis (the time when the yellow flags were marked), I was suffering primarily from back pain, and everyone who has significant back pain will tell you that quite often sitting in one particular way eases it more than any other way.

 

Also, I would love to meet the person who isn’t pain averse. Masochists need not apply.

So, yeah. I’ve been in and out of hospital recently, I’ve been tested for whooping cough and tuberculosis, I’ve been given antibiotics and throat sprays and unhelpful advice, and I have a referral coming through to an ENT – finally.

I still think the mould is to blame, but an ENT will tell me more hopefully. I want them to check out my larynx and the prosthetic in my ear.

 

I just want to be somewhat healthy. My personal best. I am sick of being sick.

It’s a very tough decision between being homeless and being in an unhealthy home. Unfortunately, bleaching my bedroom walls isn’t an option for me like it is in D’s room – my wall doesn’t exist in places.

 

So, yeah. We really need a house. We have some of the money sorted (enough for a deposit) thanks to gofundme, but the fundraiser kind of stalled out around the halfway mark and hasn’t moved in a long while. We still have a lot to raise, as it’s no use having a deposit if you can’t meet the balance.

https://www.gofundme.com/urgenthomeless

 

 

 

Tidy House, Relaxed Mind & Don’t Call Me a Victim.

Today, we tidied our flat fully for the first time since we moved at the end of January – Don’t judge, we had way more clutter than we knew what to do with – A garage full of ‘useful things’ suddenly becomes a burden in a house where boxes of things just don’t match the decor.

I hate tidying, but I hate mess even more. As an ‘artist’ with mild ADHD, clutter and mess just confuses my already overactive brain, and all I can think about is how bad it’s bothering me. There’s something calming in a pristine room – not necessarily military pristine, but taking your personal room and making it the cleanest it could possibly be. I, for one, look around and something within me just goes, “Ahhh.” and settles into that mental armchair where you can just stop, and think about everything around you. Yes. It’s perfect.

My life has so much turmoil right now. My mother was recently hospitalised, and it’s only tomorrow that she’s to be discharged – this is after being told she would be discharged 5 days ago. Her Multiple Sclerosis has progressed to more physical symptoms – I won’t describe what, because my mother is.. was.. a very private person. She was a very outspoken and strong woman before the MS stole her mind and attacked her body. This is a woman who worked from the bottom up to become a G-Grade nurse in a hospital – she was, at one point, a paramedic. She often spoke of her nursing, but rarely about working in the ambulances – I can only imagine that it’s because she saw a lot of death in those ambulances, but then went on to looking after special care infants in the very same hospital I was born in – and became one of those special care infants. There’s a cycle to life, and she knew it earlier than most ever dream of. I think she must have been about 35 when she was forced to give up work, and it crippled her. It did more damage than the MS to her psyche at that point, but she couldn’t hold the babies any more, her hands were becoming too numb.

The doctors told my mother she’d be wheelchair bound within 5 years or so. My mother gained her black belt in karate when she was 42, around 7 years after they said that. She is living proof that no diagnosis/expectancy rates are set in stone. It’s all in the fight. As for me, I have fibromyalgia, but I am a fighter. Anything less would be an insult to the mother who gave birth to me, even if her mind is gone and she wouldn’t notice.

My wheelchair isn’t a cage of disability, it’s a vessel of freedom. Using the chair in shopping centres, supermarkets and high streets means that I rest and can walk further at home – often with my crutch as my balance sucks on a good day (I have a 75% hearing loss in my right ear, this often causes unsteadiness). I wish that I could just make it all go away and stash the crutch under the bed, I hate being the ‘disabled girl’. I hate people seeing me wheel into my sons school and seeing the pity in their eyes. Don’t pity me.

It’s insulting to think that I am anything but normal. I love most of the things that my friends love, I make a point to indulge in my guilty pleasures, even if I suffer for it the next day. I have the best support in the world in the guise of Heather and Lisha. They are basically co-parents to my son, Damien. He’s amazing, intelligent and loving. We’ve done well, I’d say.

I’m unconventional, a little crazy, maternal, a fighter, an artist, an activist… I’m proud to be all of these things, and I will continue to be each and every one of them as long as possible. I have clawed my way out of financial suffering, the threat of homelessness, the verge of starvation – Things are looking much better now, and our landlord is extremely understanding of any issues and knows we will pay him back our arrears as soon as we physically can.

I look around and I think –

“I have earned all that I have, but my possessions do not possess me. All I truly need is four walls and four chambers of my heart filled with the love for those who journey with me.”