Weight Loss Journey: Re-Approaching The Last Hurdle

Saturday 2 November, 2019

So, I thought I’d update people on this little issue… This gets gross, so just, be aware. Turn back if you can’t handle icky, gross embarrassing health issues!

I was steadily losing a bit of weight by eating smaller portions, more veg and less potatoes and bread, cutting down on chocolate for unrelated dairy-digestion issues as well as weight… and then suddenly I had another spell of acid reflux that was more like choking on my own saliva than anything else. For six hours, I was regurgitating tiny remnants of food I’d eaten over the last two days – a bit different to outright vomiting, as vomit is (I believe) rejected and projected from your stomach, where as I had food work their way half way up my throat and get stuck, and hiccups that ended up in randomly projection of acidy gunk from… somewhere. My stomach? My throat? No idea. And after that night, I could barely eat for two months as eating anything solid, heavy, greasy, dry or soft and mushy would get stuck in my throat and come back up as chewed, digested bits in acidy gunk, a few hours later.

My diet for weight loss went out the window because I had to eat what I could, when I could. And the weight dropped off me. I don’t know how much, it might not as been as much as it looked, but it looked bad to me. It felt bad. It was also a worry that people who knew I was trying to lose weight would see this as something self inflicted, I’ve had those suspicions before when I had a blockage, but I was suffering, both then and now. For those two months, I wasn’t eating much more than cereal, bananas, chicken and over cooked pasta, chicken and rice, and peanut butter on toast.

I’ve had tests, all came back “normal”. Which means that i’ve been discharged and left to manage it by myself, because obviously if the tests say everything is fine, that means the symptoms aren’t actually happening… Oh to have a doctor like Gregory House!

It was the middle of august when I started to get an appetite back, and I felt I could eat without food getting stuck in my throat. Over the last two months i’ve managed to re-introduce food at more normal portion sizes than what I could over those two months. And I’ve put the weight on. And then a bit more, somehow.

And in these latest two months, I’ve only had an acid attack twice, and that was in the same week. Regular bouts of acid reflux are at the normal level of “every few days”.

And now it’s winter, which means being tempted with halloween themed cake, and hot chocolate, and roast dinners. I’m sticking to my idea of cutting chocolate out, it’s just hard when people offer me it becuase I’m known as the chocolate lover, and the cake eater, and I do love a good donner kebab. That one has nothing to do with diary, but I thought, whilst I was being honest… Though I haven’t had a donner kebab in a long while!

I just want to fit into my jeans again. It’s not about the numbers, it’s a third about health, but it’s mostly about my favourite pair of jeans.


I don’t understand reusable menstrual knickers

Saturday 19 October, 2019

Disclaimer: I have dyscalculia and every calculation on this post was carefully written down and calculated using a calculator, but my understanding of numbers comes and goes so there could be mistakes here and I welcome any corrections.


Thinx? Wuka? Modibodi? I don’t get them. It might be because I’ve not tried them, but a fair few youtubers have and they seem to be hit and miss. And I refuse to call them “pants” or “Panties” because I’m not American. I’m British, they’re knickers.

I’m not trying to make a big song and dance about it, there’s some wild claims out there about how some of these products don’t work and they really only highlight user error or deliberate misinformation, but I just really don’t understand how it’s meant to work. There seems to be a lot of washing involved, and an assumption that you have ready access to a washing machine, and can dry them no problem.

But I’ve been looking into products available. First of all, I was shocked at the price. People on facebook led me to believe that you can buy a set of reusable period knickers for maybe £20-25, so I was shocked and appalled to find Boots sell one pair of the Thinx brand of menstrual knickers for £30 each. I went to the Thinx website, and I found the same prices, or a set of 3 for between £73-77, depending on your style. That’s a lot.

They do say if you’re not happy with them, you can return them within 60 days, no questions asked, so that’s something.

You’ve got to wash them on cold, which makes sense if you understand blood, you can’t bleach them, which also yes, makes sense, but you can’t put them in the dryer, they have to hang dry.

So you have 3 pairs of re-usable menstrual knickers for, say £73.13 because I’m an organic cotton full brief kind of person. And that comes with two heavy day pairs and a medium day pair. So you’re going to want to dedicate one of the heavy day pairs for a night pair… unless you just want to freebleed on your sheets… You probably don’t want to do that.
So, really, you’re going to need 2 sets for one period, unless you only bleed for one day. So that’s £146.26… Wait, what? Sorry, that’s £146.26!?

For that amount of money I could buy 146 packets of Always cotton for 99p from Bodycare! Or 42 packets of TOTM Organic Cotton for £3.36 from Superdrug. There’s 14 pads in the former, and 10 pads in the latter, that means for that amount of money I could buy 2044 always cotton pads, or 420 TOTM pads. Say I use 4 pads a day, for an average of 6 days a month, so that’s 24 pads a month on average. That means for that amount of money, Always cotton would last me 85 months, and I’d get less milage out of TOTM which would last me 17 months. What? 85 months is just a bit over 7 years!
How long do thinx knickers last? Well ordinarily you’re meant to throw your underwear out every 2 to 3 years for health and hygiene reasons, but is Thinx different? There is no information on their website as to how long a pair should last a person, or signs to look out for which show they may need replacing, unlike Menstrual Cups which are lauded as lasting for 10 years. So if you go with the general information for knickers, that’s max 3 years. I mean, you’re not exactly getting bang for your buck, here, are you?

Okay so in this scenario where I’ve forked out £146.26 for 6 pairs of knickers. That’s £24 per pair of knickers btw. Not exactly my normal price range considering I get multipacks from Primark…

So I’ve forked out this money and let’s start with a night, because who risks going to bed when you’re due on without a pad on? Sp I get up the next morning, I rinse it under the tap and then I put it in the washing bag. In this scenario I’m your average person with a job, not a disabled unemployed mature student currently unable to work. The Thinx knickers can take up to an average 8 hours worth of bleeding, but there’s a “heavy” pair and a medium “pair” and it’s hard to say how heavy a person is and how much a “heavy” pair can really take. Let’s say I’m the heaviest I am, in pads I’m changing every 3 hours, because even pads for “heavy” days say they should last 4 hours between changes, so let’s say this means instead of 8 hours, the knickers can take 6. So, i’m at work, I woke up at half 7 in the morning, which means I need to change my pair of knickers by 2 in the afternoon at the latest. Maybe you’re more likely to change them at a convenient time earlier than 2 depending on your break. Okay. And then so, depending on when i’ve changed them, i change again between 7 and 8 in the evening. And then I swap that out for another night pair of knickers and that day’s worth of knickers have gone into the wash. I’ve started with 6, and I’ve already worn four of them, and I’d be wearing the fifth over night. And I’m heavy for two days.

By description, I assume they’d last longer on lighter days, but whether wearing a pair of longer on lighter days is advisable, I don’t know, because I can’t find that suggestion either way on their website. It’s all about how they match up to tampons and pads per amount of blood, rather than an hourly kind of thing. You might be able to get away with 12 hours if you’re very light, if doing so wouldn’t cause a problem like wearing a pad or tampon might.

I’m not trying to sound difficult, but that means you’re going to need to do washing when you get home and hope they’ll be dry by the next morning, to take a pair to work with you. Now as a disabled person who doesn’t go to work, and has limited access to a washing machine and absolutely nowhere to hang dry them… I’d need a third set, I think? At an eye watering total price of £219.39?

I have never once see anyone say they need to buy three sets of Thinx knickers, so what am I assuming wrongly here? Or do you really need to be washing the knickers you’ve worn, every day?

For the record, for £219.39 I could buy at least 221 packets of Always cotton pads, and at 14 pads per packet that’s 3,094 pads, or 65 packets of TOTM organic cotton pads, and at 10 pads per packet that’s 650 pads.

I know what you’re probably thinking. “But they’re disposable! Is the cost so important when it comes to the future of the planet!?” and the problem is, with disposable ones, they’re low energy and I can depend on myself for the most part. I unwrap them, i put them on, I wrap up the old one, I throw it away.

If I was to buy Thinx knickers, I would have to think about having enough between washes, I would have to figure out how best to dry them in a damp bathroom used by other people and the outlay of the cost. When will they start paying for themselves? Will they ever, if I’m forking out £219 every 3 years? It’s a lot to ask of someone to fork out a high financial cost as well as a high personal energy cost when there’s a lot more out of my control that effects these being viable. I could wake up tomorrow to a letter from the social services saying they’re revoking my care package all together, and then what would I do? And I’m sorry to say it but when it’s a choice between 9 knickers I’d need to wait on someone else to wash and hang up to dry for me that might only last 3 years, and 3094 pads which would last 171 months (14 years! Is that right?), or even 650 pads which would last 36 months, also 3 years, I know which sounds more appealing. At least TOTM promise their pads are ecologically friendly and plastic free.

Lastly, going back to a previous post, people need to stop recommending these as something else that homeless people can use. I see it less than with menstrual cups, but I do see it and I think this post highlights as to why menstrual knickers are hardly viable for the average person, let alone someone who is homeless! Asking someone who likely does not have much money in the first place to fork out the crushing expense of between £73 and £219 for not even a full week’s worth of period care, and then having nowhere hygenic to wash them, is cruel. And that offer only seems available online!

If you think homeless people should be using them, then I hope you have an open door policy on your home so they can use your washer and washing line in the garden to facilitate the wearing thereof!

Now if i am completely wrong, which I might be, I would like to know. It does feel a bit “mountain out of a molehill” here, and what do I know? I haven’t used them. But all that expense, all that work, that doesn’t seem viable to me, not in any reasonable circumstances. So I would also like to know if I am right, and this is exactly what you have to do to make menstrual knickers work for you.


Yes, we know about the menstrual cups

Thursday 12 September, 2019

If someone had told me at age fourteen that I would one day become so incensed by a sub-group of menstrual rights campaigners that I would write a blog post for everyone to read on the subject of menstruating and the right to choose which products suit you, I would have blushed and looked at you like you’d grown a second head.

But here I am, writing a blog post for everyone to see because a certain sub-group of menstrual rights campaigners have incensed me. Incensed!

Now before I get started, I know it might not sound like it, what with the straws issue and now this, I really do care about the environment. But I also really care about people and if i was to put something first, it was would be people above senseless ideals. The idea of recycling is always reduce, re-use and recycle. Nowhere does it say “Make a one size fit all solution to the detriment of a lot people”. For example, if you don’t need a plastic straw, great, don’t use one. But you don’t get to tell disabled people who do need plastic straws to find another solution… Well, unfortunately for me, you do get to tell people that because of the international bans that are happening everywhere. But this isn’t about straws, this is about menstrual cups. And the menstrual cup brigade keep coming on to posts, into the threads, on facebook, twitter, blog posts, charity articles, and vomit their hivemind all over it: “Use menstrual cups! Why not use menstrual cups! Give them menstrual cups! Take away choice and replace it with a menstrual cup!”

We get it, Martha, you love your Menstrual Cup so much you don’t just want to marry it, you want us all to marry it too. Like a cult.

For those of you don’t know what a menstrual cup is, a menstrual cup is an egg-cup shaped sillicone cup with a short funnel, which you stick up your, erm, “ladyfloo” (Look, I’ve got better with this sort of stuff over the last few years but you’re going to have to bear with me here, I’m not Jackie Collins) during your period and it collects the blood. I believe you have to empty it every 8 hours, or sooner if you have a heavy flow, but unlike tampons, there’s a low risk of toxic shock syndrome.

But the menstrual cup, however great for these people, is not the one size fits all solition they wish it to be, and I am quite frankly thoroughly sick of it being suggested every time a period-related issue comes up.

It is not going to help homeless people on their period, because not only is it still cost prohibitive to buy, there are a lot of hygiene related issues when it comes to being homeless. Even when given free ones, you have to think about cleaning it, you have to think about sterilising it, and you have to think about storing it. It is not good to just “wipe it with a bit of tissue” like I keep seeing suggested! I’m not a microbiologist, but I think the last thing a homeless person would want is to be made sick by a bit of remnant tissue fibres and dried blood being shoved back up inside them when their own hands don’t feel clean enough to even handle applicated tampons. And homeless people have their stuff stolen, confiscated, ruined and set on fire on a regular basis.

It’s not going to help girls staying off school because of period poverty, again because the cost is prohibitive, and you’re asking twelve year old girls who might not even be comfortable with tampons to handle something like a menstrual cup – by these people’s own admission, there is a “technique” to it – at a time when their bodies are changing. They might have strict parents, or strict religious parents, or helicopter parents with boundary issues who do not allow insertable period products which means they couldn’t wear them even if they wanted them.

And thirdly, it’s got to be about choice! And what I keep seeing from the menstrual cup brigade, is that they see these as all individual problems all solved with this one thing. Too poor to regularly buy period care? That’s okay, one up front cost of £20 and you’re set for 10 years! Kids can’t go to school on their period? Get them a menstrual cup! Amazon workers can’t have bathroom breaks to deal with tampons and pads? Don’t worry, the menstrual cup can be used for 8 hours! Long journey and a tendency to leak? You can’t leak with a menstrual cup (you absolutely can if it’s not inserted correctly or your flow is heavy)!Oh the environment’s suffering at all the disposable period care that makes it into the eco system? Solve it by only ever using one product for the next 10 years! Let’s ignore that you might need to clean it and use something in your underwear whilst it’s being cleaned.

That’s the menstrual cup brigade’s modus operandi. They ignore a lot of things. They ignore what they themselves know – Everybody is different, and because of that, everyone needs different things. The size and shape doesn’t work for everyone, just like tampons don’t work for everyone. On a very personal note, I have almost always exlcusively used pads because I can not use tampons. I’ve used them twice, I am not compatible with them, and cups are bigger and take more handling to insert. I’d rather freebleed than try a menstrual cup.

There’s a “technique” that some people, no matter how hard they try, can not “master the art of”. And, by the menstrual cup brigade’s own admission, sometimes you have to use a different type. Now a quick google tells me the Mooncup is £21.99, the Lily Cup is £18.99 and the Diva Cup is £24. So that’s someone, who might not have that kind of money, forking out at least £65 to try something that might just not work with their body? Bodies are so different! Why are people, in this day and age of understanding the issue with “for women” clothes sizes, and diet advice and medication is more dependent on an individual basis, so ignorant to suggest this one solution can work for all body types, all flows, all lives and all priorities? It doesn’t!

I am barely scraping the top of the issues I have with the menstrual cup brigade here!

I have seen them say charities should hand them out to every kid who starts their period and they’ll be set for all of school. As well as the issues i’ve already covered, ignoring the matter of simply choice, am I really reading that a bunch of adults think a child who could be as young as eight use a menstrual cup!? I mean we’re talking the practical sizing issues of this, and the emotional trauma of starting puberty young. At least lillets do nice small pads aimed at tweens in cute packaging. It’s inoffensive, it’s non-confrontational and it, or at least it is aiming to, convey the message “you might have started your period, but you’re still a child!”. I can’t see them being able to manage that with a menstrual cup. I’m not sure I’ve even seen tampons aimed at tweens.

And yes, at the forefront of this, is choice. It doesn’t matter if the menstrual cup brigade can bulldoze over issues such as pracitcality (Ask a cafe for some boiling water!) and hygiene (just wipe it with a tissue!) and home life situations (tell your parents you make your own decisions! Your religion is oppressive!), they can not bulldoze over the simple matter of choice.

You have the right to choose what to use with your period care. And whilst I’ve seen the menstrual cup villify anyone who explains their issues with the menstrual cup, blaming them for not doing it the right way, not using the right product, not having the right body, and downright eviscerating anyone who says it’s simply something they choose not to use, it doesn’t change the simple matter of fact that you have your own rights and your own voice. Don’t let them take away disposable pads, disposable tampons and plastic applicators like the straw brigade took away our straws.

And if you’re reading this thinking “Well I just like to suggest to people there are options”, here’s the problem, you’re not the only one making the same suggestion. If you think by now poeple don’t know about the menstrual cup, if you think your ability to use one means everyone has the ability, the practicality, the financial stability to use one (or two or three), maybe just try one thing before you barrel on with that suggestion: Ask them if they want a suggestion for an alternative first. Because I can tell you, they probably don’t. Homeless poeple don’t, school children don’t, charities working with vulnerable people don’t. They just want people to have better access to the products that they are already familiar with.

Just, stop.


The weight loss diaries 2: Back in the habit

Saturday 13 April, 2019

So I suppose this is my quarterly update! To be honest, I don’t know what to say. It seems like all other diet and well being blogs focus on numbers and meals that they’ve depended on, but without a way to weigh myself, I don’t really have any numbers to share, and I wouldn’t want to focus on “the numbers” anyway – it’s not my way of doing this – and I don’t have a miracle meal that’s seen me through.

The ultimate thing is that I have lost some weight.  The clothes that I’ve worn for years that were getting tighter on me are now a bit looser, and I can now get my favourite jeans on passed my thighs. I just need to lose a bit more to actually button them up and sit comfortably whilst wearing them.

I thought the hardest thing about eating better and going back to a vareity of foods would literally be the variety aspect. Over the last ten years I’ve ended up with a wierd hodgepodge of intolerances and allergies, and I can’t keep track of them and it seems neither can my body. It’s sspecially wierd because three years ago when I really wasn’t well, I seemed to have bad reactions to a lot of things and I had to swear off a lot of things – for example, bananas, eggs, fresh tomato, and all citrus fruits, and these reactions were anything from agonising pains in my stomach, stomach upsets, to itchy rashy skin, but over the last year or so, I’ve risked some things again and found myself okay with them; Others haven’t been as bad as I was expecting, like lemon, but still the itchy tingling sensation I got in my mouth leads me to think that i’m best staying away from ingesting lemon again in the near future. So as it is, the variety is okay. It’s not the best, but it’s better than it was.

The hardest thing about eating better and losing weight is actually the boredom eating and the lack of infratstructure in the big wide world.

So with the snacking… I have a history of comfort eating. It started after my friend died in 2005 and every now and then I uncontrollably fall into that same need to eat whatever chocolatey, sugary, biscuity snacks we have, in the evening a couple of hours after tea. I could psychobabble myself through the explanations but I think all that’s relevant is that these days it’s because of boredom, stress or needing a sort of edible procrastion. So it’s been hard to tell myself no. Because this is not hunger, it’s literally either wanting something to do, wanting something extra to do whilst doing uni work, or wanting to take my mind off whatever I’m stuck on with uni work. I’m worried it’s always going to be a constant battle. How can I take eating healthy seriously when 8’clock rolls around and all I want to do is eat a whole packet of jaffa cakes? It’s like I get hit with a sense memory of jaffa cakes, the taste, the soft texture of  the cake mixed with the smooth texture of the jelly and the tang of the orange, the sound of the package crinkling, the smell after the package is open, and it doesn’t go away until I’ve eaten enough Jaffa cakes to feel like I could throw up. The havoc it’s caused on my acid reflux in the past is ridiculous. So the boredom snacking, you could probably even call it binging though that feels like a loaded term that I woudln’t like to misuse for risk of trivialising people who struggle with binging – that’s been very difficult.

But, the other thing that’s made it difficult is that when out and about, there’s no real eating places if you take your own food. Sure, there’s a few benches here and there, but there’s no picnic tables, or if there is, they’re not wheelchair accessible. I thought my biggest problem would be keeping my food edible between leaving the house and eating it at lunch time, but actually even though my home made ice block made from a sponge has it’s problems, the biggest problem is comfortable eating. I can’t believe I didn’t think of this before, but it’s like city centres and towns want you to depend on them for your food choices. If you want to eat at a table, you need to eat in a restaurant of some sort, and then you have to trust that all the health information is accurate.

Now recently research was done that discovered something I have always felt to be true, that fast food chains tend to be healthier than resteraunts. This is because they have smaller portions, and, because of their reputation, now have decent ingredient/food intake information on everything, and everything is basic. That’s not to say it’s bad, it’s just they don’t go out of their way to add a million ingredients in the bid to make their food better. It’s basic cuts, basic eggs, basic flour, basic deep fat frying, where as restaurants don’t measure how much “non-ingredients” they use, and they use a lot. So of course there’s going to be a difference between a basic chicken mayo – the aforementioned cut, egg, flour, fryer, to a gourmet chicken burger, which will have high quality of oil, herbs, peppers, possibly a mixture of bread for the bread crumbs. Even though it’s not really listed, it’s still ingested, and it all adds up.

So yes, I have found myself going to McDonalds and subway when out and about, because a) it saves struggling at a bench with a sandwich on my knee and you can forget about the rice and pasta idea!
b) I know exactly how much is meant to be in it, though I understand if it’s a bit off but it’s going to be closer than what I guage with my own ingredients being made by my wayward family who don’t listen to my instructions. You can’t tell me a basic chicken salad from McDonalds or Subway is going to be worse than any salad with a dressing I can’t even bare to eat, possibly with ingredients I have bad reactions to, from an upmarket restaurant.

But I really believe if we put the infrastructure back in, with picnic benches, with public areas that welcome you to eat your own food in comfort, we’d see a lot less people eating salt and sugar rich restaurant food of any kind. And maybe, just maybe, why that’s why we don’t see picnic tables around city centres or parks anymore, because why allow people to eat their own food for free when you can make them eat unhealthy food and make money off the commodity of comfort?

Also due to my health and my parents health and carer availability, i’ve also been depending on microwave meals. Again, not the healthiest, there’s a lot of salt in them I wouldn’t eat if I had the choice, but the fact is I don’t. I try and get the healthiest ones I can – I’m quite partial to getting Marks and Spencers mini meals, but the cost wracks up so I can only get them if I know I can afford them.

Maybe with all of that combined, it’s why progress might be considered slow. But actually, given how close I am to fitting in to my favourite jeans once again, I’m doing well. I mean, I am undoing a year’s worth+ of over eating and comfort eating here, and being unable to exercise,  something must be going right just with portion control.

(Portion control comes from a lot of diet and health apps and general health and well being advice, which seems to be a mixture of calory counting and making sure as many as the different food groups are represented on one plate. We’re talking less chips and potatoes – not none, just less – and more green vegetables at it’s most basic).

So let’s see what happens in the next four months.


Spontaneious Travelling: Chester (Part 2)

Saturday 23 March, 2019

After we ladies who lunched in McDonalds, we headed over to Chester Cathedral. This was not a revisit from me and my Nana’s day out in Chester, I’ve just always wanted to go to Chester Cathedral, mostly to compare it to our Anglican one here in Liverpool (We don’t talk about the Catholic one). There wasn’t a set ticket price to enter, however there is a certain pressure to “donate” a “suggested amount” at the entrance before you enter, in the form of an intimidating donation box with a sign as you pre-queue to go in, passed a staffed desk by the doors. I paid the donation, but due to free carer tickets being the standard, I only paid for myself and my Carer came in free with me. I think it was quite fair!

It is nicely done! It is not 100% wheelchair accessible, but it was accessible enough for me to finally feel welcomed somewhere. I would say it’s got a different feel to it indoors than the Liverpool Anglican cathedral, and because I’m biased I might be inclined to say it’s not as beautiful as the Liverpool Anglican cathedral, but that would be unfair. It has it’s own beauty to it and it was nice to look around. We arrived just at the start of a short afternoon service, so me and my carer stayed at the back, admired the architecture and when the priest finished his short service, we went looking around the grounds

I’m not religious now though I used to be, and although there’s a lot that doesn’t sit right with me when it comes to religion – and never did, as a matter of fact – but you have to give credit where it’s due. This building, like the Cathedrals here in Liverpool, have become half way houses to meet the needs of the religious and the tourists, and it is a very peaceful place to wander around.

The side of Chester Cathedral at a corner. A cast iron fence in the foreground at the bottom of the screen, with a bit of green garden between that and the building. The building is mostly a dirty brown. On the bottom floor is 8 glass windows, the second floor shows 10 glass windows, with spires obstructing their view. Above those windows are more spires and the top is the tower bellfry with three chimneys showing

And, like all tourist places, it even had a gift shop! It was a bit cramped, but you’re reading the words of someone who got through Liverpool Anglican Cathedral’s gift shop without knocking a single item over, so rest assured, no items were smashed in the procurement of labelled pens! There was also a lovely stain glass window effect magnet that I now regret not buying.

Finally, after what felt like a terrible morning, my mood was shifting and I started feeling a bit better about this outing and my lack of mobility. Ironically it took an almost 2000 year old building to do that, against a backdrop of modern businesses. Modern businesses in a similar-ye-olde-aged-building, admittedly, but modern nonetheless, with modern customers who are no longer institutionalised in institutions…

Ahem.

Where was I? The only downside was the battery on my wheelchair. Thanks to our stop and start tour around the Cathedral, and the weather warming up temporarily, I found my battery was still hovering on full orange when we first came out of the Cathedral, however 10 minutes later after trying to get my maps on my phone to work to see where the roman gardens were, I turned my wheelchair back on to see I’d gone down a full orange.

I still decided to continue on and risk it. After all, what’s a day out without risking battery failure in the middle of the main road, right? I did let my carer know what was going on, at this point… but not to the degree that I could have. I told her, at that point, I was losing power a bit more quickly than normal, but we should have enough power to get to the park and back. With her faith in me, we continued.

So we eventually got to the park, but not without a few false starts. IE, I can’t read maps and even when I’m following the directions I always tend to go to wrong until the arrow sends me off in the right direction. Unfortunately, it was winter, so the beautiful gardens with the beautiful roman mosaics on the floor didn’t shine up on me like it had all those years ago. Don’t worry, I plan to go back and admire it in full bloom!

So I took a few photos but, the temperature had dropped again, we could see our breaths despite the bright watery sun in the sky, and worried my battery – at this point flickering between one orange and two oranges – would leave us stranded at the bottom of the ramp, we didn’t go much further than half way, and turned around.

“Can we get a hot coffee?” my carer asked.

“Yes,” I said, “And I’ll get a cup of tea.”

The plan at that point was to head back to the train station, get something to drink there and wait around for our train back. However we saw a nice little quaint tea and cake shop on our route which had a ramped entrance and, frozen to the core and my carer’s caffiene levels dropping as fast as my battery power, we ducked inside for a mid-afternoon, pre-train snack.

Elements of a fancy tea - a jug of hot water, a jug of milk and the teapot behind, all white on top of a white tablecloth with a blue layer coming through the lace. A nicely manicured hand is in the background, the nails visible show an orchid magenta and a light pink on the third nail. To the left of the photo there is a pot of sugar and salt sachets

I found the tea was lovely. My carer ordered coffee and a traditional cream scone which she also thoroughly enjoyed. It was only after drinking my tea and finding myself in need to use the toilet that I realised I’d failed to do the first basic check when in a food establishment – ask where the toilets are first! This place did not have a wheelchair accessible bathroom and their non-disabled toilet were down a set of internal steps.

Bugger. I do hate giving money to places who only want my money, not actually cater to my needs.

On those grounds I can not recommend this place, and that’s also why I won’t be naming them here. You know who had an accessible toilet? McDonalds and the Cathedral!

Oh well! We continued our journey for the trian back. It was at that point I told my carer how bad the battery situation was – I was critically losing battery power, flickering between the last orange and the first of only two reds, and that I thought the taxi driver had done something when he tied his straps around the wrong place on my wheelchair. This wasn’t the usual cold weather battery loss. So the walk back to the train station had to switch to the bus – which was easy to catch once we knew which bus stop we had to go to, and unlike the shuttle bus, it stopped at a normal stop opposite the train station and we got out no problem.

On arrival at the station I nipped to the toilet – red cord was tied up and there was a bin in the transfer space – and then with the help of staff and my Carer, got on board the train. At that point I was down to the reds and wondered if I was going to make the switch between platforms when back to Liverpool, but that turned out to be the least of my worries when I was on board.

I won’t go into details, but basically I got harassed on the train, the staff did nothing to help and next time I go to chester, I will go by bus. On the plus side, thanks to the warmth of the train and being stationary for a while, by the time we got back to Liverpool, I’d gained full oranges again. With the change over to the Northern line and then the pavement journey home, I managed to get back on red, going at a snail pace.

I do plan on going to Chester again, especially because shortly after I got back I was made aware of a guardian article that said Chester was one of the most accessible places! But I would do things a lot differently. Whilst the rows is accessible – as in you can get to them from the ground floor of the shopping centre – it’s not completely accessible, and most of the shops on the rows have steps to get in to them. I have a policy for life – If I have to ask to get in, I won’t go in and i’ll go somewhere else. It could be that the shops have ramps inside, there might be alternative entrances, but that to me is shifting the responsibility of access on me, not them. If there are alternative entrances, why are they not good enough for everyone to go through?

And the shuttle bus situation needs to be fixed. I sent a complaint letter shortly after I visited chester, and I never heard anything back. I should probably chase that up!

But that cathedral is very much worth a visit. I think on a warm, sunny day, just sitting in the gardens would be lovely, and next time I go I’d like to try the cafe instead of depending on McDonalds.

On the matter of this being an affordable day out, let’s tot it up:-

Train Faire:- £5.20, day saver
Begdrudging Taxi Faire:- £10.00
McDonalds Lunch consisting of a McChicken Sandwich, Medium Fries and a cup of tea:- £5.37
Cathedral “suggested donation” entry fee:- £4
Afternoon tea:- £5.50
Emergency Bus Faire:- £2.40

Total:- £37.97.

A bit high for a day that was only half enjoyable, I must admit, especially when you think that taxi faire was completely unneccessary, but for the distance travelled and in comparison to a day out in, for example, London, I think it’s not as bad as it could have been. Especially when you compare it to London even one step further and think how long it takes to get between places when in a wheelchair. At least in Chester, the furthest part ouf was the park.

And for anyone interested, I went out a few days later and despite only being out a couple of hours I came back on orange. I called up the wheelchair repair people and the guy who came out confirmed what I suspected – the battery case had been cracked, and also a wire connection had been broken. There is only one way that could have happened.


Spontaneous Travelling: Chester (Part 1)

Saturday 16 March, 2019

So I got the news a short while ago that something I contributed to was no longer going ahead. It was originally thought up 2 and a bit years ago, but sadly after a few false starts, it just wasn’t meant to be.

One of the things I did for this project, I only did last year, when things still looked to be going ahead. I was not going to be a regular contributor, because of my health and degree, but I was going to give something when I could. And now I am free to do what I like with it, here it is:

A journey review of Chester. From a disabled person’s point of view, not planned to the nth degree.

I live in Liverpool, and it’s very easy to do, especially for able bodied people, to just hop on the train and go to Chester from any Merseyrail train station with the change at either Central or Moorfields. And it’s pretty cheap at the cost of a Merseyrail Day Saver. I had a vague plan set out. I’d last been to Chester when I was a teenager, and I remember having fun with my Nana, so I wanted to do similar things I’d done with my Nana back when I was a manual user.

I would say this started off badly as soon as I tried to book the ramp. I hardly ever book ahead when it’s Merseyrail, I don’t believe in it and I think expecting disabled people to book everything in advance is holding us to a higher and stricter standard than able bodied people are. However, st the time of this journey, I was experiencing a lot of problems with Merseyrail and their unfair policies that put disabled people at a higher disadvantage to travel than able bodied members.

A member of staff who, for health reasons (she was pregnant), could not deploy the ramp. Merseyrail’s policy was, instead of having two members of staff on shift or having that member of staff in a different role whilst another member of staff was on platform, so that wheelchair users could continue to travel freely on the network, they left that staff member to stay in their role and ordered taxis for anyone wishing to travel.

Now because I complained and explained it was discrimination to expect someone to wait up to an hour for a taxi to turn up, just because they wouldn’t have a second member of staff on to do the ramp, they booked me a taxi to turn up at the time I would get to the station. The problem is the train journey to Central is 17 minutes, with 2 minutes to get from my local station to the next station by train. By road, it takes 10 minutes on a good day, 15 on an average day and 20 minutes on a bad day, meaning I wouldn’t only miss the train I planned to get (the 12 past 10), I would potentially miss the next two, eating in to the time I had available with my Carer for the day in Chester. It was all so incredibly unfair and frustrating.

My carer couldn’t turn up any earlier than 10’clock so we got to the station with 2 minutes to spare before the train arrived, meaning we would have been able to get on the train had I been able bodied. But I’m not, and there was a taxi waiting. My second issue with the taxi situation is that they use the same company that my hospital uses when there’s not a patient transport ambulance available, and I’ve had enough negative experiences with them through hospital transport, that I no longer get this company’s taxis, and I wasn’t happy having to depend on a driver from this company to get me to the next station when I could have just been on the train. And then the day got worse.

The taxi driver was annoyed he’d had to wait, and then he got the ramp down. The staff member had left us to it, because of a previous intense conversation where we clashed over the ramp situation a few times before. I know it’s for medical reasons, but I felt it was partly her responsibility to fight disabled people’s rights to access the train. By continuiing to both be on the station without a second member, or at all, it allowed the continuation of discrimination from Merseyrail.  So, understandably, she left.

I asked the driver to put the seats up, so I could turn around. He became… I won’t say aggressive, but certainly confrontational. “Er, Why?”

I said it was so I could turn around and travel backwards.

He said No. I asked why, and he said he wasn’t going to let me travel backwards, because the wheels turning around in his car would rip up his carpets. I said I always travel backwards, I’ve never ripped up anyone’s carpets. He would not budge. Then he told me I’d be fine, because I’m in an electric wheelchair, and I should travel sideways anyway because that’s safer. They are both lies.

  1. Lightweight electric wheelchairs skid and tilt if not either wedged in or tethered down. I am not heavy enough to increase traction or to keep four wheels on the floor if we take a corner badly, and I’ve already tipped backwards in a taxi once, I don’t wish to experience that again.
  2.  It is not safer to travel sideways, it is safer to travel backwards.

At that point I had the choice of sending the driver away, having my PA go up to the station and tell the staff member she’ll have to call another taxi, wait up to an hour for it to arrive, at the risk it would then take 20 minutes to get to the next nearest train station, (when able bodied people could just get on the train and go 2 minutes up the line!!!) meaning another potential hour and a half eating in to the time with my Carer to get to Chester and back, or travel sideways. I compromised, and said fine, but I needed the straps.

Then he argued with me that I didn’t need the straps, because i had breaks.

I’m going to let you in on a secret that manufacturers don’t like you spreading: The breaks don’t do anything unless you’re on free wheel. If you’re on Powerchair mode, which as an electric wheelchair user, I almost always am, the breaks don’t do anything because it’s the motor that stops the wheels from going around, either by being turned off, or by being on but not pressing the joystick to go in a direction. And as I’ve explained already, I skid, which means the wheels are skimming the tractionless floor without turning at the axel. It is the same as being on a boat in your car, and not being tethered down. If the waves are rolling, your car’s going to be too, even if the breaks are on. It’s basic physics. And I say that as someone with dyscalculia that almost failed physics.

I eventually got him to put the straps on, and in that process, he broke my wheelchair. As he tied the strap down in the wrong place, because he didn’t listen to my instructions, nor did he have the right straps, he tightened the belt and I heard a small crack. That crack led to my wheelchair losing power a lot quicker than normally over the process of 6 hours.

By the time we got to our next train station, we literally got there just as the second train was pulling out, so we had to wait for the third. The journey, thankfully, went smoothly from there, getting to Central and then it didn’t take too long until we were in Chester.

Chester has a shuttle bus of sorts that takes you from the station to the city centre. First we tried to find out where it would be, we were told to look at the information board, but it wasn’t actually on the information board, so then we went to the actual information desk, waited in the kew and the information desk said they were only train information and weren’t sure exactly where the bus stopped but if I went outside the main doors, I would either find the bus there or other poeple waiting for the bus that I could ask.

We did, and then we waited. And waited. And waited. And then the bus turned up, and I couldn’t get on it. It was wheelchair accessible, but it was a middle door type situation, and the problem was the bus driver couldn’t get that middle door close enough to the kerb to deploy the ramp because the front of the bus was blocked by a sharp crescent terminus. I don’t know if I believe him, because he wouldn’t even try.  I had people offer to tilt me and lift me on, which the driver recommended I do!!! But otherwise, he couldn’t help and I coudln’t get on.

I said that wasn’t even remotely accessible or appropriate, and we left, allowing a gentleman in a manual wheelchair to be lifted on the bus instead. I make no judgement on people who choose to be lifted, but I’m not a child nor a parcel from amazon, and that ramp is there to be used. I did not get the chance to get a photo of the ramp I couldn’t use, but here’s the front of the bus the driver told me I could get on instead:-

The picture shows a red bus with it's door open, four people's legs in the queue, one lady clearly in jeans and a gentleman in front of her with dark grey trousers on. A man also in jeans is crossing in front of the photo. The bus's front steps overhangs on the curb awkwardly with a ten inch gap

So, we got a taxi to the city centre. I went backwards, and I was strapped in with the proper straps! It costed £10, including the tip (I’m from Liverpool, we tip). I thought it would start looking up. I took photos of the nice buildings, I took photos of the clock, I took photos of a roman soldier wandering around and then hoped I wasn’t breaking some sort of etiquette, and then we headed in to The Rows. Now, I remember the Rows from when I was there with my Nana, and I remember being pretty impressed. This time, it left me somewhat dissappointed!

I could get around the ground floor, great. And then we went up. I could get from one side of the outside, to most of the way around the building, but I could only get in one or two shops due to those shops having steep steps either up or down into them, then I had to turn around and go back the way I’d came whilst people who could use stairs had free run of the whole place. Either I’ve misremembered how good Chester was, or I didn’t care at that point because I loved spending time with my Nana, or something’s changed in Chester since then.

It had gone lunch time by then, and to say I was down was a bit of an understatement… and then I noticed my battery gage. Talking of things being down… I had full green when we left the house, and I was suddenly on the last green, except what had really caugtht my attention was the flickering out the corner of my eye. It was going between at least one green and just the oranges. I can lose battery in the cold quite quickly, but it hadn’t been that cold, even if it was, this was quicker than even that, and I’d never seen it flicker between two colours like this before. It wasn’t quick, but it seemed that any time I changed direction, or stopped, I would gain or lose a bar, respectively.

So we tried to get lunch in somewhere warm, hoping my battery would re-calibrate itself. Or I was, anyway. I, er, neglected to share this news of impending battery death with my carer for fear she’d make us go home 3 hours early…

It didn’t go well. I mean, lunch plans specifically, not the battery issue. Either places I could get in did food I wasn’t kean on – I might have mentioned previously, I eat pretty bland foods with simple recipes. No herbs, nothing spicy, nothing too heavy, and nothing I can slop down myself; And the places I wouldn’t have minded trying, all little eateries, had no wheelchair access. We ended up in good old McDonalds. My Carer wasn’t best pleased…

But hey, McChicken Sandwich, Chips and a cup of tea. 10/10, would recommend!

A photograph of a meal from Mcdonalds. A cup of tea in a jazzy style cup a mcchicken sandwich in the middle with stray bits of lettuce in the box and a carton of medium fries on the right with a monopoly sticker showing. The fries are spilt on to the tray.

Chester Nay McDonalds yay

The question is, did the rest of the day get better? Tune in next time to find out!


AFJ’s response: Fireworks.

Saturday 2 March, 2019

A couple of days ago, I became aware that Parliament is launching an enquiry into why, over the last few years, there have been a sudden increase of petitions from the general public asking for the government to create new, stricter laws in regards to fireworks. As the words on the webpage go on to say, the committee are asking for people’s views on the current laws on fireworks, and what needs to be considered when looking at changing the current laws on fireworks.

And on one hand, I’m grateful for someone elevating this issue, not just purely on fireworks, but also for noticing that so many people keep signing petitions, and each time are effectively fobbed off and patronised. The last time I signed one of these petitions, I was disgusted, yet not surprised, to find the response was basically “We don’t need to do anything more, because there are current laws in place that deal with the issues being addressed by this peititon”. So I do think it’s a good thing that someone is asking for our views further. The problem is, these views have been covered by every petition to date. Even in the webpage, they have listed what some of the reasons they’ve found on the petitions they’ve looked at, and still want people to contact them with their reasons, in their own words.

I feel like that’s slowing down the process they could already be making, and it’s putting responsibility on the general public. For example, I did eventually get an email about this, but I originally only even knew about the committee because my friend linked me. How many people would love a say and will miss out because the call for their input hasn’t reached them?

But, I have got the call and I will be sharing my views directly with them, using their contact form on that link. And I will say a better written version of the following:-

I’m afraid of loud noises. I don’t have any specific reason, i’ve just always been that way. And yes, admittedly, somehow during my teenage years I managed to supress my distressed reaction. Then late teens hit and I found I couldn’t suppress it anymore, then the twenties hit and I found every phobia I have is ten times worse than what it was in childhood. And it’s not just fireworks out in the wild, it’s also pyrotechnics at concerts, thunder storms, and even, depending on the tones, loud angry shouting and loud bangs in film.

But let’s focus on fireworks. My fear of the noises they produce means for a week before the 5th of november to the week after, and all through the christmas period to some weeks after January the 1st, I am caused significant distress, because the fireworks are available, and people will just set them off because they can.

I do my best to protect myself from the bangs of the fireworks, and I want to just make it clear here that this specific issues is literally just the loud bangs, if the pretty twinkly ones didn’t end in a loud explosion, I would be fine; But the problem is, they aren’t just silent twinkles, they are loud explosions, and they seem to be louder every year. That means a week of earphones in, loud music that drowns it out, from maybe 6 o’clock in the evening, to 2 o’clock in the morning,  hoping that no random bang from a firework will be set off outside of those hours, and what is set off isn’t so loud I can hear it over my music.

And I am not alone in these fears, and I feel many other people have a much better reason than I do for having these bad reactions. There are people with autism, there are war veterans who are triggered, there are people with non-autistic sensory issues, and then there’s the animals. And they are suffering. We shouldn’t have to live like this!

And that’s just the noise!

Around here in Liverpool, though I imagine it’s the same up and down the country, fireworks seem to go hand in hand with anti-social behaviour. If irresponsible kids aren’t setting off fireworks in the parks and fields, late at night to the early hours of the morning, anytime between September and January the 15th, they’re setting them off in the middle of the road in the direction of cars and buses. Just a couple of years ago, a firework was aimed at the side of the bus, reportedly so it would go in through the open doors, but luckily it went off course. They’re setting them off in random bins, with no care for what might fuel the fire in the bin and cause a spread to the building (which also happened here, right opposite my flat!) and they’re setting them off as pranks, and sometimes, they’re setting them off with the deliberate aim to hurt people. The response to the last petition talked about the laws, but let’s face it, the kids run off before the police get there, and the damage has already been done, and when do the kids ever get caught? If the bangs aren’t coming from somewhere definitive, how can the police even get there in time to catch them?

The current laws are not stopping the irresposible ownership or setting off of these fireworks,  they’re not helping after the fact if they’re not caught red handed, and how can the police catch anyone red handed when police numbers have been cut?

It’s just ignoring the key issue. These things wouldn’t happen if kids couldn’t get ahold of them in them in the first place, and I really believe they wouldn’t be able to get ahold of them, even illegally, if they only went direct from warehouses to organised public displays and pyrotechnic specialists thereof, and controlled via licenses. We understand a lack of access to guns means less gun-related accidents and crimes in the UK, why not with fireworks?

And, with public displays being the only way to celebrate occasions traditionally celebrated with fireworks, we need to go back to only celebrating on celebration nights. Yes I am aware of diwali and chinese new year, and I am including these too. It is not a human right to celebrate with fireworks, and maybe if more people go to displays, the prices of them would drop back down. It is not fair to those of us who can not tolerate the constant barrage of loud noises to put up with it for two weeks at a time. The other year, Bonfire Night seemed to be every night from the weekend before, and the weekend after, and New Years, the week before christmas and on and on and on. Even if you take in to consideration of irresponsible kids just setting them off whenever they like, you still have a lot of responsible adults thinking their right to buy fireworks from any supermarket and newsagents in their area, and their right to set them off in their own back garden, trumps the health and wellbeing of everyone else around them. It doesn’t. I honestly don’t care if the 5th falls on a Tuesday and people are too tired from work, I should not have to spend a fortnight dodging explosions coming from far beyond my home and neither should anyone else, nor animals who can’t understand what exactly is going on.

So, to summarise my feelings on fireworks, the noise levels of those explosions need to be brought down, firework purchasing should be only for license holders, those license holders need to be managers of public displays, and those public displays need to be scaled down to just the day of celebration. Any unlicensed use or ownership should be treated as a criminal offence, stronger than “antisocial behaviour” by the fact it’s literally someone setting off explosives.


I am not normal

Thursday 3 January, 2019

A few months ago, I wrote a post, which I locked, about how worried I was about the chance of being genetically normal. A few years ago, I was put in for a genetic map study because my rare undiagnosed condition had gone undiagnosed for too long. I was worried because I’ve had a few people in my life, at key times of my life, who have doubted that there was anything wrong with me at all. I was regularly dismissed as being an attention seeker and it’s taken me years to grate off the feeling that I am not disabled enough for help, not disabled enough to be disabled, that their outright and underhanded attitude towards me imprinted on me. I might have a terrible memory now, but I can still remember most, if not all, comments said to me that have hurt over the years, and I remember who said them and when they said them.

And I was worried about the results, because if it turned out I was genetically “Normal”, that would turn my identity upside down. I couldn’t think past the possibility of various conditions I’d come across and read up about, because there was always this chance that they hadn’t found any genetic reason for why my body is the way it is.

Well. I got the results and it’s taken me a while to write this entry, like five months nearly, but I am glad to say that I am not normal. Genetically speaking, i’m abnormal. To say I was relieved was an understatement.

I have a rare bone disorder, that is so rare that currently I am the 50th person to be diagnosed with it, in the whole wide world, and is currently the most severest and the most furthest advanced that my genetecist had seen. I’ve lived with this for over 30 years, in mystery and in doubt and in pain. I had surgery to physically correct my body’s abnormalities that the genetic fault cause, at a time we didn’t even have genetic mapping.

The faulty gene was only discovered and named a year and a bit ago, and it was only in April last year that it flagged up on my sample.

I know this sounds suspcious, but I don’t want to share the name with everyone just yet. I’m just glad I have a piece of paper that confirms what I’ve been saying all this time, that my joints rest badly on each other, and that the pain I’ve been suffering from is bone pain. I have a piece of paper that says it’s a collagen fault, randomly occuring within me. I have not caused this myself, and my parents didn’t cause it, and more importantly, the doctors didn’t cause this by operating willy nilly on me when I was a child, as one unhelpful person suggested. People paint the 80s and 90s as if it was full of mad scientists eager to operate and to change and to improve without a care to the consequences, but as having lived through it, I know for a fact that whilst my doctors did some radical things to save my life, and to improve it on subsequent operations, they were never a moment too soon. I remember the pain of being left to wait too well.

If I was to have children, I would pass it on to them. You can’t have it and not carry it, but you can have it without inheriting it.

Now that they have a name for it, and as the word spreads more doctors will know what to look for, I hope it means more people looking for answers, because they live in pain and the current diagnosis of arthritis or scoliosis and or post-operative complications or they’re attention seeking or it’s all in their head, get tested and diagnosed too.

I am not normal, and that’s the best news I had in 2018.

I don’t know what 2019 will bring but i’m not sure it will top cracking a 30+ year old mystery.

 


They giveth and they taketh away

Monday 19 November, 2018

Hello all, hope you’re all well. It’s been a while since my last blog. But here I am again, to complain about something. As usual.

So, as I blogged previously at some point, a few years ago I bought a kindle. It’s a basic model, 5th Generation, and I believe that it’s the last version to have page turning buttons along the side on them. I bought it on sale at a time when the newer Paperwhite and touch screen versions were out.

That was in 2013, and five years on, my little kindle is getting, erm, sluggish. I don’t think it’s ready for the great recycling centre in the sky just yet, it’s only five years old after all, but I am getting the White Screen of Death sort of frequently, and even though the experimental browswer was put on there and never got further than basic searching, it now doesn’t work at all without crashing the kindle in to a White Screen of Death, making that feature completely unusable.

So I’m preparing myself to get a newer one at some point in the future, and here’s the problem. The newer ones don’t work for me. The Kindle basic 5th generation weighs 169g, and has buttons either side to turn the pages. Newer models are heavier and have no buttons, it’s all touch screen. I hold my kindle with one hand supported by a pillow, I can’t hold heavier models and if I can’t use the hand I’m holding the kindle with to turn the page, it won’t be any use to me at all.

To give a better comparison, even the latest ipad air 2, 32GB weighs 500g.

If and when my kindle does go on me, I really don’t know what I’ll do without it if the other devices are much of the same as we have today. And if goes sooner rather than later, it could even affect my degree. I put my text books on there and the tutorial hand out material too, so I can read along with the rest of the group as they read the paper handouts.  I don’t want to go back to struggling, but the Kindle solved the problems I had with reading, and if I can’t get something as good as it, I’ll be back to struggling.

For those of you who don’t know, I was fed up of struggling so much that I bought a mouse shaped device which had a camera where a rollerball on an old mouse would have been, called The Vision Booster, and the idea is you roll the mouse over the paper and read as you go… and it was terrible. There was a fisheye effect and you couldn’t read the inside margins, but you also couldn’t hover the mouse over the spine because then the words went blurry.

So, I have to know. Am I the only person affected by these changes with technology? Or are we, like the straw issue, the hidden minority who are forced to either adapt or be left out because we’re ignored in the drive for superior technical progress? Am I missing some really obvious solution


Protected: Please don’t tell me I’m normal

Sunday 24 June, 2018

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