The Killing of Alison

A few years ago, I added a boy I went to school with called Tom to my Facebook friends list. I remember him as a lanky 15 year old with a green mohican hairdo and a penchant for punk music and although we weren’t friends we knocked about with the same crowd. As you get older, however, and with the benefit of nostalgia anyone in the same year as you is classed as a ‘friend’, hence me adding him to my FB.

I started to see various bits and bobs about Tom in the local press. The articles focused on his sister Alison, who tragically took her own life thirty years ago when she was 24 years old while in the care of local authority mental health services. I still didn’t know the full story, however, until this week.

Tom has written a book called ‘Lions, Liars, Donkeys and Penguins‘ about what happened to Alison and his family’s fight for justice at what tantamounts to her killing. To support their legal fees I bought the book for my Mum for Christmas, thinking I’d skip through a few chapters myself just to get the gist.

I was hooked from the first page and have read the book from cover to cover in less than a week, despite the fact that due to my brain injury and eye problems I haven’t read a book in over 5 years.

Tom isn’t a professional writer, which shows. The book has been self published and not professionally edited, which again shows. But both add, not detract, from the authenticity of Tom’s story and the result to me feels like the book equivalent of Ken Loach’s ‘I Daniel Blake’. It is raw, intelligent, bravely honest and searingly angry.

The book focuses not just on Alison’s story, but on the effect on Tom and his family of her death and the subsequent quest for the truth behind her suicide which was nearly 30 years in the finding. What is uncovered is a catalogue of lies, abuse, bullying, brainwashing and ultimately manslaughter. It highlights our broken public sector services, which police themselves, and their focus on protecting their reputation and image rather than caring for the taxpayers they exist to serve.

If you’re looking for a stocking filler for Christmas you could do worse than buy Tom’s book. Ok I’ll be honest – I’m hoping as many of you as are able will buy Tom’s book. He needs the support of knowing people care, not to mention the money. Thank you ❤.

Weekly roundup

I seem to have a bunch of new followers this week – *waves*, it’s lovely to have you on board 😊.

At the start of the week I decided I was in need of some cheering up, so I put up my Christmas tree. The twinkly lights make me feel happy and I also wanted to take a photo of Bertie with said tree to go on our Xmas card. The stack of presents taking up room on my landing were also getting on my nerves, so I wrapped them and shoved them under the tree out of the way!

I was on crutches due to my pulled calf muscle until yesterday, when I was finally able to put weight on my leg. I hate crutches with a vengeance and if I had to use them full time I would want to top myself.

Tuesday morning at 8.30am I’d requested a call back from the Doctor. My Mum is prone to intertrigo, a skin rash, in the creases under her breasts and we’d spent months in the summer getting on top of one under her left boob. But although it had mostly cleared up the skin was still very painful and we couldn’t work out why. The Doctor was helpful, asked me to take a photo on my phone and sent me a text containing a link for me to upload it. She then rang Mum back with a prescription for some cream and we have to see how she goes for the next week.

The same morning I was back at A&E with my Mum to have the dressing on her burn changed again. It didn’t look any different to ten days ago when she first scalded it on steam from the microwave, so another dressing was put on and we are going back at 10am this morning to have that changed.

She has been told not to get the dressing wet, so Wednesday as promised I helped her shower, managing fairly well despite hopping around on one leg! First I put her hand in a plastic bag and taped that to her arm with masking tape so the water couldn’t get in, then I helped wash her hair, back and legs. Showering is demanding physical activity for Mum and makes her massively out of breath, so when she got out I wrapped her in a towel, sat her on the bed and dried her off. I then dusted her with talc before helping her to get dressed. Usually, after a shower she is so breathless she can’t speak and so exhausted she feels dreadful for ages but because I’d helped she said she felt really good. Which proves she actually needs help to shower. But I only have the energy to bathe twice a week myself and certainly don’t have the energy to help someone else, and she wouldn’t contemplate having home care. I can’t blame her because I wouldn’t either. The home care system in the UK means you get whoever is on duty, and the thought of a succession of strangers you don’t know from Adam seeing you in the nuddy and washing your intimate areas is horrifying, especially when you live in a small rural town which thrives on gossip.

My Dad is finally getting on well following from his hip replacement a month ago. The wound has stopped bleeding and he’s getting out every day for a walk. But now he wants to drive the car. Lord knows why, as we’re still in lockdown and has nowhere he can, or needs, to go! You are allowed to drive 3-6 weeks following the surgery so he thought it would be a great idea to have a go. I went nuts. Has he forgotten that his wound has taken 4 weeks to heal or that it bled so badly twice he has to get the nurse out in the middle of the sodding night?! Or that we’ve had to make two 110 mile trips to the hospital for the cut to be re-stitched as it was gaping?!! And now only a week after the last hospital visit he wants to stretch and strain it by using it on the car clutch. FFS!!!!!! Mum also chimed in saying she couldn’t understand why I wouldn’t let him drive the car, my reply to which was “Ok drive the car but if his wound, which is still dressed, bleeds again don’t ring me or think I’m taking you back to fucking Hexham. And if he has an accident and the police ask why he is driving with a fresh 10″ surgical cut on his leg you can explain.” Honestly, it’s like dealing with a pair of children.

TalkTalk have made another objection to my complaint. They belong to the automatic compensation scheme, which means that if they book an engineer and he doesn’t turn up they should automatically credit your account with £25. My parents had 3 missed appointments, none of which were automatically credited, so during my last phone call with TalkTalk I demanded the money. They are now saying that this was a settlement and as I accepted it there is no case to answer. So yesterday I spent an hour putting together a counter-argument that actually the money is their legal obligation and part of their contract with my parents and in no way constitutes a fucking settlement. Instead of spending time, effort and money on a Soicitor to challenge our complaint maybe they’d like to fix my disabled, isolated parents’ phone line which hasn’t worked properly since January.

I’m a bit hormonal still, can you tell? 😆

I haven’t had a minute to myself this week and am beyond exhausted. Christmas I am having 2 weeks off and my parents will just have to manage. It’s been quite a year and I need some downtime to rest and recharge.

RICE

I’m hanging some washing up on the airer in my Utility room yesterday morning when I stretch to put up a pair of jeans and hear the tendon in my calf snap followed by blinding pain like I’ve been shot. Ouch and double ouch!

It’s fairly clear I’ve torn the muscle and now can barely put any weight on my leg, the treatment for which is RICE: Rest, Ice, Compression & Elevation. So I slap on some Ibuleve gel, wrap it in a cohesive bandage and pull on a compression sleeve then spend the rest of the day with it in painful spasm and throbbing like a son-of-a-bitch.

Rest and Elevation are out of the question. For a start it’s lunchtime so I have to make myself some food, then there’s the dog to walk (on my scooter but nevertheless I have to get on all my waterproof gear as it’s raining, hobble on my crutches up to the garage, unchain the scooter and take off its protective cover while hopping about on one leg, then do it all again in reverse when I get home), and at 3pm I have to drive to town as my Mum has an appointment at A&E to get her burn dressing changed.

Thankfully I’ve injured my left leg and my car is automatic for which I only need my right leg so I’m able to drive, but by the time I get to my parents’ house I’m feeling a bit woozy 😕. I can’t cope with the wheelchair, so Mum shuffles and I hobble to the entrance of A&E. After 9 days the burn doesn’t look much different to day 1, so another dressing is applied and we have to go back for a 4th time on Sunday. We shuffle/limp back to the car.

By this time it’s 4pm, my worst time of the day, and my energy has vamoosed. My mast cells are also protesting to my injury, so my cheeks are flaming red and I’m feeling pretty rubbish. However, when we get back home my Dad asks if I would take a look at his mobile phone. Apparently it hadn’t charged overnight, so he’d “pressed every button” and now it’s not working. FFS. Sure enough, it’s telling me it will only make emergency calls so I use my own phone to Google the issue which I’m told is “notoriously difficult to cure”. Super. I try all the usual (turning it off and back on; removing the sim and battery; a soft re-set;) none of which work. As they are still having issues with their landline cutting out, they really need to be able to use the mobile. However, I’m simply too unwell at this stage to bother with it any more so tell him I’ll have a look tomorrow.

I drive back home in a dizzy stupor, give Bertie his tea then collapse gratefully into bed, with my leg throbbing like it’s about to drop off. I’m still worried about my parents’ lack of phone, however, so do a bit more digging on Google and discover my Dad is with the 3 network who are working on the masts in his area and “there may be issues with signal”. So it looks like I spent 35 minutes trying to fix my Dad’s phone for nothing and it’s likely to be a network issue. FFS. Again.

I’m too tired to make myself any supper, so make do with a brew and a banana although I do manage to spill half the tea while hopping back up the stairs to bed 🙄.

I wake this morning and not only is my left leg still aching but the rest of me hurts too. My right leg and hip are taking the brunt of my weight and protesting loudly. My wrists, shoulders and neck are also sore as hell from using my crutches. I’m feeling quite sorry for myself truth be told. Rest and Elevation are once again out of the question, though, as my Mum hasn’t had a shower, or even a decent wash let alone her hair shampooed, since she burned her hand 9 days ago so I’d promised her I’d go in at 10am this morning to help. Lord knows how that’s going to go with me on one leg, but she can’t exactly wait another 2 or 3 weeks til I’m on the mend, so we’ll just have to manage.

First, though, I have to try to ring the Health Centre to request a GP call. Mum had intertrigo (a skin rash) for months during the summer lockdown which we finally managed to get under control with steroid cream. However, although the skin looks fairly well healed she tells me it is ridiculously painful. So I need the GP to figure out what’s causing the pain. And after I’ve done that I need to finalize both mine, and my parents’, Tesco shop for delivery tomorrow.

All of this is just another day at the office when you’re a Carer but while I’m taking care of my parents no-one ever takes care of me. Which ordinarily is fine, but just now and again when I’m also in pain, exhausted and feeling crap would be nice.

Weekly roundup

My brother and his family all ended up testing positive for Covid at the start of the week. It wasn’t unexpected after my niece contracted the virus while at work as a teacher. She has now finished her two week isolation period and is feeling really well and her sister is also not particularly badly affected, but both my brother and sister-in-law are currently feeling rotten and have been in bed for days with chills, diarrhoea and awful headaches.

During the first lockdown the vulnerable group consisted of the over 70s and those with certain pre-existing conditions, but as it turned out most of the people who ended up in intensive care were actually over 50 not over 70 so this time round anyone over 50 is classed as vulnerable and men do seem to be more at risk from severe forms of Covid than women. Having said all that, as my sister-in-law’s immune system is still compromised following chemotherapy for breast cancer during the summer we are monitoring her closely.

On Tuesday I made yet another 110 mile round trip to the Hospital with my Dad (my 8th visit there in the last year), following severe bleeding from his hip replacement operation. The week before he’d had extra stitching to the lower part of the wound which wasn’t healing properly and although it’s now starting to heal it’s still not where it’s supposed to be. So a new dressing was applied which needs to be left in place for another 2 weeks which means my Dad will have been unable to shower for 5 weeks 🙁.

What I forget to mention in last week’s round up, was that as I was leaving the house to take my Dad for his first wound check trip to the Hospital my Mum showed me a huge burn on her hand. So while I was at the Hospital I asked the nurse if she had a suitable dressing for me to put on. She was lovely and gave me all sorts, but did also say that my Mum needed to have the burn properly assessed. So on Thursday I rang the health centre to arrange that.

We currently have a telephone triage system in place due to Covid and after a couple of hours a GP rang Mum, only to tell her there were no nurses available to look at her burn and to get herself along to A&E. But Mum had no way of getting there. I was at home 7 miles away being interviewed by a magazine; my brother and whole family are isolating as they are infected with Covid; and my Dad can’t drive as he’s just had a hip replacement. So the Doctor told my severely ill, wheelchair dependent, 80 year old, shielding Mum to get a public taxi. On her own. I’m still LIVID and thinking of making a complaint.

So after my interview, and despite the fact it was 4.30pm and my worst time of the day in terms of feeling ill and having zero energy, I had to drive back to town to take my Mum to urgent care. The nurse we saw was lovely, said the wound looked a little bit infected, dressed it and arranged an appointment for us to go back on Saturday. Which we did and the wound was re-dressed and now we have to be back again on Tuesday.

In amongst all this, I am in the middle of a formal complaint to Ofcom about my parents’ telephone provider TalkTalk. I could write pages on the issues they’ve been having with their landline over the past several months but suffice to say TalkTalk have been a shower and the night my Mum rang the emergency services after finding my Dad bleeding the line cut out twice during the call, leaving them unable to access help. I’ve tried for 4 months to get TalkTalk to sort the problem out and they have been a nightmare to deal with, so I ended up having to take the complaint to the regulator who appoints a mediation service to negotiate a suitable outcome. I’m asking for £3000 compensation for the emergency call situation, which potentially put my Dad’s life at risk (I probably should have asked for more!), which TalkTalk objected to. But thankfully this week the mediator rejected their objection and have given them 10 days to offer a suitable response to my complaint. It’s been a shed load of unnecessary work for me though, as you have to gather loads of evidence, copies of all the correspondence to the company, a timeline of events, upload account details and identification details, and an authority for me to act on my parents’ behalf. I didn’t fucking need it.

To add insult to injury, my period would have been due this week and despite the fact it hasn’t arrived I’ve still felt absolutely rubbish. I get all of the period symptoms of migraine, backache, period pain, nausea and crushing fatigue just without the bleeding 😕. It hasn’t been the most fun week I’ve ever had if I’m honest.

I often wonder why I’m so permanently stressed and lacking in any time for myself, and weeks like this remind me of the reason. I’m not just running my own life. I’m running both the home and lives of two other vulnerable, often confused, and needy people who seem to lurch from one unexpected crisis to the next. It’s utterly, utterly exhausting.

At the same time, my elderly neighbour who lives opposite is probably in the final week of her life after battling first ovarian cancer and now stomach cancer, so I feel very lucky to still have my parents with me.

Right lovely people, it’s time for breakfast. I still haven’t managed to write a post about my pain sitch – I’ll do my best to fit that in this week!

Take care and stay safe x

Here’s what I think

As most of my regular readers know, I have had phenomenal success with my photography in the last couple of years. It really took off when I started doing fine art composite work, ie two or more photos stitched together to create a made-up scene, where I was able to express my view and experience of the world rather than taking straight forward record shots.

When I first started in fine art photography I made pretty pictures, usually of girls with long flowing hair in long flowing dresses. I love to celebrate women’s femininity, not least because in order to make it in the world women have to become more masculine and if we don’t we’re simply not taken seriously. For example, we have to wear power suits and little makeup in the work place………. but high heels (what is it with the high heels other than most men love them and we still feel the need to keep men happy?!).

Then I developed into making pretty pictures with stories attached and they did superbly well. But in the last year or so I’ve moved on again and am now producing work which has meaning attached. The pictures make a statement rather than just being something pretty to look at. And they aren’t doing anywhere near as well, despite still being ‘pretty’ and in exactly the same feminine style as my ‘story’ pictures.

This pretty, feminine, but opinion-less image has done really well.
This very similar image, depicting the shackles of a child bride, has done spectacularly badly.

I’ve been at a loss to understand why they weren’t being well received and I think I’ve found the answer. They contain an opinion and to add insult to injury it’s a female opinion. And the public doesn’t like female opinions, particularly when they challenge the status quo.

I have always had strong opinions on all manner of subjects and have often been labelled as ‘opinionated’. I think being invested, excited and involved in the world in which I live is a great thing. But the ‘opinionated’ label with which I’ve been tarnished is not a complimentary one. Men, it seems, can have all the opinions they like but if you’re a women it’s a very different kettle of fish.

Women with opinions are seen as aggressive and ‘not nice’ and God forbid women shouldn’t be ‘nice’. God forbid they should challenge the status quo of a millennia-old patriarchy. The world suits most men (but thankfully not all!) very nicely thank you. They don’t want it to change and they certainly don’t want it to change to suit women. That would be way too scary.

But many women don’t like my pictures either. My art is challenging and often invites change. For example, some of my recent images contain comment on the way we treat our pets (caging dogs is appalling to me), the way women treat other women (female genital mutilation is performed by women on women) and killing animals for food (how can my nation call itself ‘animal loving’ then rear animals with the sole intent of murdering them?). I bet I lose followers after that opinion!

The gallery I joined recently to sell my pictures is curated by women. Brilliant I thought, my images will do really well here! But in nearly 5 months I have not sold a single picture and none of my work has been promoted by the curators. So I studied the work the curators were promoting and it is armchair art. Uncontroversial and lacking in any kind of opinion 😥. For me, the whole point of art is to ‘speak’ to the viewer. It’s not just something to hang on the wall which contains the same shade of blue as my curtains and will look nice above my sofa.

So should I go back to creating pretty photographs which don’t rock the boat or create any kind of negative reaction, but sell well? Hell-to-the-no. I’d rather be skint. I know we like our women placid, polite, nice and opinion-less but tough shit – the universe got me instead 😆.

Weekly roundup

On Tuesday morning my niece tested positive for Covid. She’s a teacher, so it wasn’t a total surprise as the virus seems to be rampant in our local schools at the moment. She’s 27, so ordinarily no-one would be concerned as young adults usually aren’t badly affected by the virus, however she is a TOF baby (Tracheo-oesophageal fistula) who was born blue and unable to swallow so had to have emergency surgery on her trachea and oesophagus. She has had a characteristic TOF cough ever since, so anything which affects her lungs is of more concern that it would ordinarily be.

As she is in a support bubble with her sister and parents, they have all had to self isolate for 2 weeks. Her Mum is the one who had breast cancer during the first lockdown and is still classed as very vulnerable to complications from Covid due to her reduce immunity following chemotherapy, so we’ve all held our breath. She developed a slight cough on Tuesday night so immediately got tested but thankfully was negative. Huge sigh of relief. My brother however, who has been at my niece’s house every day for a week decorating, is now coughing so we’re waiting for his results. My other niece, who is a police officer, was supposed to be having a fitness test to sit her Sergeant’s exam on Thursday so was really upset she couldn’t attend. However, the Inspector at her station thinks really highly of her (she got a first class honours degree in policing and criminology and is destined for big things), so has promised her he’ll find a way around the problem.

I found out about my niece’s Covid sitch while in the car on a 100 mile round hospital trip with my Dad. Last Sunday morning, my Mum got up to find the bathroom looking like a murder scene. Terrified, she went to check on my Dad who was sound asleep and oblivious! It turned out that he’d gotten up to use the loo in the night and blood had literally been pouring from his surgical dressing. Which would have been alarming but understandable if it had been a couple of days post his hip replacement surgery, but absolutely should not have been happening 11 days post surgery.

They rang the out of hours team who sent out a lovely nurse. She checked the wound for infection, cleaned it and re-dressed it. All was well until 2am on Monday morning, when my Dad again got up to use the loo (he has an enlarged prostate) only to find he was bleeding worse than ever. Another call to the emergency services, who sent a much less friendly nurse out to re-dress the wound.

Bleeding profusely from a 12 day old cut is not normal, so I rang the hospital where he had his surgery first thing Monday morning who said they urgently needed to see him. So that’s where we were heading when we heard the news about my niece.

The Consultant we saw wasn’t concerned about the bleeding, though skilfully evaded all questions as to where the blood was coming from. My Dad’s wound was all but healed and not infected, although there was about a 1 inch gap at the bottom of the cut which was gaping slightly, so he put several steri-strips over that and asked us to go back in a week.

Two days later, I get a phone call from my Dad to say there was a large pool of blood inside the new dressing! It is now over 2 weeks since his surgery and the wound has been freshly stitched. So I ring the hospital, who were once again unconcerned but still evaded all questions as to where the blood was coming from. It’s actually a superb hospital, so I trust their judgement, but I still want to know where the blood is coming from especially as my Dad at this stage had been bleeding for 6 days!! The good news is, though, that up until that point he had been in a lot of pain since the surgery and his mobility was rubbish but just in the last couple of days he’s come on in leaps and bounds and is walking really well 🙂.

In amongst all this, Thursday morning both myself and my parents were expecting our usual grocery delivery courtesy of the fabulous Tesco. But at 10am I receive a phone call from the driver to say he can’t find my house. Strange, as I’ve been having weekly deliveries for 16 years, but I reasoned it was a new driver. So I ask him whereabouts he was in my village, to which he replied he was in another village 12 miles away. WTF?! It turned out that when I’d been looking at the plot of land to buy a month ago I’d put the post code into the Tesco.com website just to check that Tesco deliver there (that and checking the broadband speed are the first things I do before I even consider a property!) and Tesco for reasons unknown had saved this in my address book and used it for my shopping! They were brilliant, though, and arranged for the driver to take it back to the store and another driver to re-deliver it later that day.

Then my Mum rings me to say that her shopping hadn’t arrived and when I checked on the Tesco website the order wasn’t even listed! So the day I’d booked those deliveries there were clearly gremlins at play. As we’re in lockdown all the slots were booked up for the next 2 weeks but as my Mum is shielding and on the priority delivery list I was able to find 1 available slot, so hopefully she got her shopping last night – better late than never!

So with one thing and another it’s been quite a week. As a treat to myself, and to unwind a bit, I booked a free place on a Zoom talk on Saturday afternoon by world renown photo journalist Manoocher Deghati. Wow, what a man! Having to flee into exile from his home country of Iran, he has covered the world’s most dangerous conflicts and stories for over forty years. Such courage, and he still cares deeply about our planet and talks eloquently about the reasons for conflict and turmoil. A book has been written about his life, so that’s going on my list to Santa.

The good news is my pain levels have been much better this week, but as I’ve already written a tomb I’ll fill you in on that another time. Take care lovely friends and stay safe x

Resilience

Chronically ill people are resilient. The more sick you are, the more resilient you become – at least in my personal experience. Having been ill now for 26 years, and having encountered gaslighting, neglect, near death and profound isolation as part of my illness experience, not to mention alcoholism, drug addiction, divorce (my own and my parents), domestic violence, bullying, cheating and parental abandonment outside of my illness experience I think I have resilience in spades. It’s not like I had a lot of choice – it was either get on with it, or give the fuck up and slit my wrists. I chose life every time (though it’s been a close decision on a couple of occasions if I’m brutally honest on account of the neverending pain, constant puking, seizures, inability to speak, inability to walk, inability to eat and difficulty just breathing in and out).

My resilience, despite everything I have lived through, makes the current whining about lockdown and the restrictions of the pandemic, however, hard to deal with. I feel profound empathy towards those who have lost a loved one due to Covid, or who are battling the disease, and absolutely no empathy for the healthy who are whining about having to self isolate for 2 weeks often in the company of other family members (not actually ‘isolation’ then) or people moaning about not being able to go to the pub for a month to see their mates or how the killer virus will interrupt their Christmas plans. Get a fucking grip.

I first got sick in 1996. There were no mobile phones, Skype, texting or Zoom. No internet or home computers. When I say I was isolated, I actually mean I was isolated. I lived on my own and did not see another human being’s face, other than my parents, my cleaner and the very occasional doctor, from one month to the next. One year to the next.

It’s grating to hear healthy people moaning their mental health has been affected by the pandemic. Most people’s mental health has been affected by the pandemic for heaven’s sake, especially in the early days when we had no clue what was going on and had little knowledge of the virus. The entire world was anxious. But most of us just got on with it. We did not go demanding help from over-stretched mental health teams actually dealing with real mental health issues like bipolar or schizophrenia, or counsellors dealing with real live grieving people.

Then there are the people whining about not having a hug from their grand-children or significant other for a few weeks. I haven’t been touched by another human being since 2007. Nearly 14 years of total physical isolation. But do I go harping on about it? No. It would be lovely but it’s hardly the end of the world.

And those irritating sods twittering on about not having their annual holiday abroad or being able to go to the gym. So fucking what? You had 3 months paid leave from work during one of the hottest springs on record and can walk and run on free pavements, so I’m not exactly sure why you feel like you’ve missed out. I haven’t had a holiday, or exercised, since 1996 and it hasn’t killed me yet.

I have lovely friends who have been bedridden with severe M.E. since they were teenagers or young adults and they are now in their forties. Highly intelligent, warm, funny, kind women who have never ever been abroad on holiday. Never been kissed. Never driven a car. Never had a career. Never been to the gym. Never had their hair professionally done. And who spend their entire lives alone within 4 walls, too ill to watch TV, listen to the radio or even have the curtains open. Unable to read a book or talk for more than a few minutes on the phone. Do they moan or whine or tweet endlessly about their mental health (even though I’m sure it’s shattered)? No. Not for one second of any day.

I often wonder if the 2nd world war were to begin now how on god’s earth we would all cope. We certainly have little of the resilience of our grandparents.

My parents are I were talking about Marcus Rashford’s campaign to give poor children free meals and while it’s obviously a needed and worthy cause my Dad expressed his surprise that quite so many people can’t feed their kids. My Mum was one of 9 children, two of whom died shortly after birth, and my Grand-dad had a heart attack at 56 and could no longer work. There was no welfare state, so as well as looking after a sick husband and 7 children in a one up one down house, with a toilet at the end of the garden and a lean to for a kitchen, my Nan had to go out and clean people’s houses to survive. They didn’t have much, but they never ever went hungry. She baked bread from scratch on a lead grate that had to be stoked with coal every second of the day and fed her family a cooked meal, with pudding, every day of her life. If any of the kids were hungry in the meantime, and the 4 growing boys always were, they had a jam butty (they couldn’t afford fresh fruit). I’m not sure why so many parents these days can’t buy a bag of spuds and some cheap mince and actually cook a meal. My Nan also washed for 9 people, including bed sheets and towels, by hand using a poss tub over an open fire which she got up at 4.30am on a Monday morning to light before she went to work as a cleaner. She lived until she was 86 years old.

I’m not sure where, as a nation, our resilience has gone. We seem to whine a lot and have little appreciation for how wonderful our lives actually are. We may be in the midst of a pandemic, but most of us are safely in our homes, with our loved ones, watching Netflix, being paid the majority of our salaries for doing bugger all and checking our Twitter accounts to keep up with our friends. We have books, games, jigsaws, box sets, craft materials, art materials and 101 other ways to keep ourselves amused. Then there’s Amazon and Tesco, Gousto and Just Eat. It really isn’t much of a hardship for the vast majority of the population. It’s not like we’re living through the Blitz.

My love and prayers to anyone grieving the loss of a loved one due to Covid, to the key workers caring for and protecting us, and to anyone currently battling the virus, but to all the healthy people whining about how tough this year has been I have one thing to say – shut the fuck up and get on with it.

Boundaries

As a child from a dysfunctional family I have always struggled to erect and enforce boundaries. There weren’t any boundaries when I was growing up. The way any issues were resolved was for one or other parent to go ballistic and start chucking stuff, so I mirrored that in my relationships as a young adult. It doesn’t help that by nature I am feisty. I’m never going to be a calm plodder – I’m way too passionate for that. Finding a way to express my personality, stand up for the issues about which I feel strongly and yet fit in to a society which frowns on emotional outbursts, particularly from women, without guidance of any kind has been a lifelong challenge.

As I’ve aged and grown more comfortable in my own skin, however, it’s definitely become easier. This setting of boundaries is the main reason I refused to stay at my last Camera Club where I was being bullied, and also the reason I refused to keep quiet about the reasons why I’d left. Most people at the club turned the situation around on me, gaslighted me and victim blamed me mercilessly, but I still don’t regret my decision for a second. I would do the same again because this is a boundary I will not allow to be crossed. I was bullied for years at secondary school and will not tolerate that in my adult life or protect the perpetrators which allows them to go on and bully someone else.

Another boundary I refuse to allow is being dominated by men. I had a lot of that in my early adult life and it is not acceptable to me. There is a man at my current Camera Club who added me on Facebook. He’s a Conservative voting, middle aged, middle class, white guy who thinks that his view of the world is the only view and that everyone else is wrong. He’s commented on posts about the welfare state, of which he has zero experience or knowledge, and my posts about women’s issues, again something he has zero experience of living. I’ve also been posting a fair bit on my FB page about the pandemic and the USA election, both of which are important issues of the day, and he has challenged my views on every single post. Within seconds of writing anything he has commented and it’s always to tell me that I am wrong (and therefore he is right) or to post a laughing smiley, basically deriding my viewpoint. Enough was enough when he told my American friend she was missing the point about Trump (she lives in the States and he……..well, doesn’t!) and basically called me an extremist for saying that Trump’s policies on immigration and the rousing of hatred for Mexican citizens scared me to death. I’m not saying that illegal immigration isn’t an issue, as it also is here in the UK, but demonizing an entire population, inciting fear, hatred and ‘other-ness’ is never the way forward.

Twenty years ago I would have flown off the handle and we would have had a blazing row, but I’m older and wiser now. I could have just ignored him, but that wouldn’t have a set a boundary. So I told him “my view is clearly different to your view, but it is a view to which I’m entitled. I suggest your air your views on your own Facebook page, because I don’t have the energy to keep responding to your challenges of my own views on my page”. He immediately replied (of course he did!) but I haven’t read it because you can guarantee it’s not an apology and is instead a comment designed to upset or infuriate me, and he’s now excluded from seeing anything I post on Facebook (I don’t want to unfriend him as I have to see him every week at my Club).

Here’s the thing about setting boundaries that many women in particular struggle with: people often aren’t going to like it. It may cause upset, like with the bullying at my last club, and it might not make you popular. And that’s OK. Your job is to love and respect yourself not to please everyone. The sooner women realize that, the better. I would rather have no friends and tons of self respect, than lots of acquaintances and zero self respect.

It is possible to be kind and loving, as I am towards my alcoholic Mum, but to also have boundaries. There are behaviours that I will tolerate from her and behaviours that I absolutely will not. If she’s acting in a way which isn’t acceptable to me I tell her “you’re drunk, so I’ll speak to you again when you’ve sobered up”. She hates me at the time but it’s that or I just stop visiting.

It’s been difficult to find a way of setting boundaries calmly but firmly, especially when you’re pissed and simply want to tell the person to fuck off, or you want to be sarcastic or derisory. However that simply perpetuates the behaviour of narcissistic people, who feed off conflict. The one thing most people with narcissistic tendencies hate, I’ve discovered, is polite but firm boundaries which leave them with no outlet for their behaviour.

Due to my early conditioning I do still struggle with setting boundaries, but it’s gets easier and more comfortable the more I do it. Have I lost acquaintances as a result? Yes. Do I give a flying fuck? No 😁. It’s very liberating.

Weekly roundup

England’s new lockdown started on Thursday and so far life is little different. According to my Tesco delivery driver the roads are as busy as normal, so no-one appears to be staying home. In addition, many shops in town are staying open and doing click and collect. We the public are only supposed to be making essential journeys and there is nothing essential about collecting flowers from a florist or picking up a bag of Liquorice Allsorts from a sweet shop. FFS. The arsehole upholstery man whose business is at the top of my drive is also working as usual – he takes advantage of a loophole which allows manufacturing industries to carry on working. I can’t see how re-covering chairs is ‘manufacturing’ or can’t be done at home and I’m certain that his customers who are still traipsing up my drive to drop their furniture off are breaking the law – what exactly is ‘essential’ about a journey to take a stool to be upholstered?

I finally found something which helped my back and pelvis this week. I managed single-handedly to tape both sides of my spine vertically from neck to coccyx and also put 3 horizontal strips across my upper, middle and lower back. I immediately felt relief from the pain and have slept through the night for the first time in weeks – fab-a-lous. After 3 days though I needed a bath, so removed the tape intending to put fresh on……only to discover this:

Hives

Probably the biggest hives I’ve ever had in my life which are itching me out of existence. I now can’t put the tape back on and am back to being in agony and not being able to sleep for the pain. There are days my fucking life sucks.

Note the ‘cigarette paper’ scar from my spinal surgery when I was 16. A classic symptom of EDS, yet according to the HEDGE researcher I don’t have EDS I have historial Hypermobility Spectrum Disorder. My arse.

Wednesday I get an SOS phone call from my Mum, who tells me that my Dad’s leg and foot is swollen and bruised from top to toe, so despite a migraine I drive the 7 miles to town to take a look. Thankfully I was as certain as I could be (bearing in mind I’m not a doctor) that it was just ‘normal’ bruising and swelling following his hip replacement and I’ve told him he needs to start walking on it more, even if it’s a bit sore, as he’s now 10 days post op.

Yesterday my new neighbours offered to bring me a pizza home from a cafe which is doing take-outs during lockdown. That doesn’t seem like a big deal, but as I live in the sticks I haven’t actually had take-out pizza since before I moved here in 2003, so to have someone rock up at my door with my dinner was fucking awesome! That’s the first meal I’ve had cooked by someone else since February 😲 and even though it contained tomato puree, which I don’t get on well with due to its histamine content, I couldn’t have given a stuff and enjoyed every mouthful.

I hinted a couple of weeks ago that I may have house move news. I found the most fantastic plot of land which had outlying planning permission for a small bungalow. Ordinarily it would have been out of my price range, but it also had a local occupancy clause which meant it couldn’t be bought up by fuckers people from outside Cumbria or even bigger fuckers developers, keeping the price down. I put in an offer but it has been rejected 😥. However, we are back in lockdown, the economy is tanking, jobs are uncertain and I will just have to see what the future holds and whether the seller changes his mind in a month or three.

Humongous congratulations to my friends in America on the election of Biden as your next President! I still can’t believe that the best a country with a population of 328 million can come up with for its leader were 2 men in their 70s, one of whom is bonkers and the other of whom has all the energy of an ME patient, but at least the lesser of two evils won. I don’t imagine for two minutes that Trump will gracefully leave the White House, however, so I hope the next few weeks/months aren’t too turbulent.

Right, breakfast and painkillers are calling. I’ve had a truly awful spell of migraines again this past week and am fed up to the back teeth of living with almost permanent head pain. I just carry on as normal as much as I can, but it’s no fun whatsoever and makes me sick to my stomach. I’d sell a kidney for a healthy body.

Ask The Doctor

After having the lump under my arm, and another the size of a small egg inside my elbow crease, for a year now and suffering increasing pain during that time not only in my arm but everywhere else I decided to consult The Oracle this week. In other words, I rang my GP.

I explained that I’d lived with pain for 40 years, so if I were complaining about pain it must be bad and that I’d done nothing to set it off so was concerned about why I was suffering so much. Her response: “it’s probably muscular-skeletal. Self refer to physio”. WTF.

Not a single blood test to check for inflammation, rheumatoid factor nor anything else. And does she not think that I know more about the muscular-skeletal issues of hEDS than the physios at my local hospital who know bugger all? In fact, the last time I got referred there they tested my muscle strength which sent my neck in a horrendous spasm which lasted 4 days – I refused to ever go again.

There is never, ever any mention of my mast cell disease at my GP appointments and the fact that mast cells can accumulate and cause all manner of lumps and bumps. This is why people with rare diseases need to be under the care of a specialist. GPs have no knowledge whatsoever of this stuff, which isn’t their fault, but it is their fault that their patients then have no care at all for their disease.

She was about to dismiss me when I said “so what are my lumps all about?” I know the scan on the lump under my arm a year ago came back negative for lymph involvement, but what is it? And no-one’s ever looked at the one inside my elbow. I’d mentioned it on at least two occasions in letters I’ve sent her over the last year and she has never once contacted me to follow up. She seemed determined to skip over it this time too, but I refused to let it drop. So she told me to pop along and she’d take a look.

The upshot is she thinks it’s a lipoma, ie a benign fatty tumour. Having Googled, however, it is very unusual to have a lipoma inside your elbow crease – they tend to be on the outside of the elbow or on the forearm. And they don’t usually cause pain. So she’s sending me for an ultrasound as it’s over 5cm in size. Hallelujah.

When I had the lump under my arm scanned, though, and the lymph nodes weren’t involved, ie it wasn’t cancer, it was just ignored. I asked the radiographer what it could be if not my lymph nodes and he said “it could be anything. Bone, muscle, soft tissue” strangely none of which can be seen via ultrasound. If you have a have a large lump under your arm which is causing pain surely you should at least try to discover what it is? Apparently not. If it’s not cancer you should think yourself lucky and quit whining, even if some days your arm feels like it’s dropping off. Needless to say, I don’t hold out much hope of finding out what the lump in my elbow is, particularly if it’s mast cell related.

Here’s the thing about mast cell disease: it causes all sorts of fucking issues. My Mum, who has MCAS too even though she has not been investigated or diagnosed, has had 3 large lumps removed from various parts of her body which weren’t lipomas but we don’t know what they actually were. She’s had her gallbladder removed, which was so shrivelled with disease they couldn’t even find it on ultrasound yet she had been told for 20 years that the horrendous pain she was in was psychological (oh my god just writing that makes my blood boil). She has weird fatty, hugely swollen legs which no-one knows the cause of (lipedema and lymphedema have been ruled out) and the worrying part is my legs look just like hers but not yet swollen. She has strange non-diet related cholesterol issues and I also have high cholesterol despite being vegetarian for 30 odd years. I have blood which doesn’t clot well. All sorts of stuff about which no-one joins the dots.

Histamine is known to induce tumour growth and proliferation so personally I think anyone with a histamine issue who develops any kind of lump should be kept a special eye on. But it won’t happen. I don’t have Covid or Cancer so I just need to shut the fuck up and crack the fuck on. Story of my life.