Category: Chronic illness

‘Freedom day’

Four face masks with cartoon animals on them
Four masks from Sugar and Sloth

Tomorrow is ‘freedom day’ when the final lockdown restrictions are lifted. What freedom people are currently lacking is unclear but some things I’ve seen are – having to wear a mask, having to check in at shops and restaurants and not being able to meet as many people as they like, apparently this is oppression and we can’t keep wearing masks forever because it’s not normal.

After the first date for ‘freedom day was delayed anti-lockdown and anti-mask (or pro death) protesters marched through London demanding everything be opened up again. They walked passed open pubs, open cafes and restaurants with indoor dining and into an open shopping centre which then had to close because of the disruption they caused (I bet Alanis Morissette didn’t see that one coming).

Cases are rising rapidly despite vaccines, younger people are contracting the virus, there’s another mutation that has been allowed to spread rapidly and again we’re told that more people will die.

Freedom for disabled and chronically ill people looks quite different, the office of national statistics says that 2.2 million clinically extremely vulnerable (CEV) people were advised to shield. This meant not leaving the house at all unless absolutely necessary, many relied on government food boxes or support from local charities and mutual aid groups that sprung up during the pandemic.

People who are CEV especially those who are immunocompromised are getting told to shield, some people haven’t been out since the start of 2020 and the vaccine may not even work for immunocompromised people or those taking immunosuppressants. Since the start of the pandemic there’s been this message that it only affects the elderly and vulnerable, aside from this not being true these people are not disposable because they’re older or disabled but they’ve been throw under a bus and allowed to die in order to give other people their ‘freedom’.

The other other used phrase (apart from wake up sheeple which makes me want to stab someone in the eye) is of you’re scared stay at home and let people who want to live go out. People who are shielding don’t want to have to stay in or have to avoid contact with their partners, they don’t want to go a year without seeing anyone or not getting the medical or social support they needed and they shouldn’t have to stay in forever because others are too selfish to wear a mask or any other minor sacrifices.

July is disability pride month and once again disabled people are being left to die or excluded from society this time to please the people that are tired of the pandemic. We have to learn to live with the virus, let the bodies pile up on the street and pretend to care with gesture politics like clapping because making sure people can go to the football and trade deals with India are more important than saving lives.

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10 things not to do to disabled people

It’s disability pride month, I’ve written a list of things not to do to disabled people.

The disability pride flag a blue, yellow, white, red and green lightening bolt on a black background.

1. Dont guilt trip disabled people for not being ethical enough. We know Bez0s is awful, we know amaz0n treat their staff like crap, we know all the issues with fast fashion and ‘unnecessary’ plastic packaging on fruit and veg. Shops often aren’t accessible and many of us don’t have the energy to kook through charity shops and second hand shops. The pandemic made people even more reliant on places like amaz0n especially those who were shielding. Plastic straws have such a negligible impact on climate change and single use plastic and that ‘unnecessary’ plastic on fruit and veg may be the only way someone can eat it (trust me we don’t like paying more because we can’t cut up a mango)

2. Do not touch someone’s mobility aids, they’re an extension of our bodies, our freedom to access the world. Grabbing someone’s wheelchair could cause pain and injury or damage it (do you know how much those cost?), moving someone’s mobility aid to somewhere more convenient might take away their ability to move from where they’re sitting, if something is in your way ask (nicely) if we’re able to move it, we don’t bite (often).

3. Don’t touch or distract a service dog, they’re working and distraction puts the handler at risk.

4. This should be obvious – don’t report them for benefits fraud because they walked or you think they’re faking it when they’re having a good day, despite what the Daily Mail says benefit fraud is not the massive problem they try to say it is. Don’t make comments like ‘it’s a miracle’ if a wheelchair user stands or walks, not everyone is paralysed or unable to walk at all.

5. Following on from 4…..don’t complain about accommodations made for disabled people, motability cars aren’t free they’re rentals with the money being taken out of benefits, yes we can often get a carer in free to events but thats because we need help and assistance, you might have to wait for the next bus or move your buggy but wheelchair users have a legal right to that space (I’m an ambulatory disabled person and that’s the only space I can safely stand so if I can move so can non disabled people).

6. Don’t make assumptions about our abilities if we say we can do something or we don’t need help don’t argue or do what you think we need.

7. Don’t assume somewhere is accessible because it has a lift or ramp, accessibility isn’t that simple, ask what accommodations we need or if we want to look into it instead.

8. Don’t take photos or videos of us in public. I can’t believe I have to write this, our appearances, behaviour, the way we interact with the world or the way we physically move may not be the same as everyone else but news flash we’re people too, don’t do this (and if you do please go suck a bag of dicks).

9. Don’t blame us for the lack of access effecting you, we can’t help the amount of time it takes for trains or buses to put out ramps, we have places to go too.

10. Don’t take advantage of things that are in place to make like easier for disabled people, don’t park in blue badge parking spaces if you don’t have a blue badge even if you are only going to be a few minutes, don’t use the accessible toilet to go for a poo or to take selfie’s, priority seats are near the doors on a train or bus because we need them to be please don’t sit in them unless you need to.

These are just a few things and nowhere near an exhaustive list, everyone’s circumstances are different and not all disabilities are visible, my comments about not using an accessible toilet or priority seat are not aimed at people who aren’t visibly disabled.

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Managing

I don’t have an issue with taking the easier option, I’m not going to take the harder way of doing something if an easier option is available, why struggle to add something up if there’s a calculator available? Why carry a suitcase if it has wheels? Why use a tin opener if there’s a ring pull?

But when it comes to being disabled i tend to manage before going for the easier option or the option involving using aids or adaptions I’m more hesitant to do what’s easiest. Some of this is about other people’s perceptions or questions, when I first started using a mobility aid I was so anxious about what people would say because I was going from having an invisible disability to a visible one and suddenly people became aware of the accommodations I needed (not completely but more than they had) you can thank social anxiety for me not asking for accommodations before or even after I still prefer things like badges or lanyards to talk for me.

My partrner recently moved and the new flat has a bath with a shower attached but there are no handles or grab rails; at home my bath has handles and a grab rail and that’s a struggle. I put grippy duck stickers in the bath I told myself it was fine and I could manage but then I caved and got a shower seat of course I still questioned whether I needed it because I was managing without.

A white slatted shower stool in a white bathtub
The latest accessory

On Monday I used my shower stool and it really made things easier, I could spend longer in the shower, I used up less energy, was less anxious about falling over and I was able to wash my legs and feet without the risk of falling.

Managing isn’t everything, I can manage to walk unaided but it’s harder, causes more pain and fatigue and I’m more likely to fall over, I could manage at cons and outdoor events without using my crutches but it would be exhausting, my hips would hurt so much I wouldn’t be able to walk the next day and I wouldn’t be able to manage without a lot more help than I already get especially on wet or uneven ground (shout-out to my service Teffy).

Sometimes it’s not enough to just manage and if there is a way to make things easier don’t settle for managing.

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Sing little darling

Sing with me

Blue, green, red and white laser beams pointing in all directions around s concert venue

I love live music I love going to gigs even though I don’t do it that often it’s something I really enjoy. As a rather emo teenager I’d queue up in the cold wearing just jeans and a t-shirt arriving several hours early to guarantee a place at the front by the stage with only the bare minimum of possessions with me to avoid the need for a bag. I would far rather be crushed and sweaty in the mosh pit than sensibly seated or in the less crowded areas at the back.

My first and only festival experience was not something I’m keen to revisit, between the lack of sleep, disrupted medication schedule and discomfort of camping day festivals and open air gigs are more my thing with a comfortable bed to return to

The days of post gig highs from adrenaline and lack of sleep have been replaced by planned annual leave the day after a night out to recover, I can’t stand for anywhere near the length of time a gig lasts and crowds bumping and pushing me not only increase my anxiety but cause physical pain and my rock my already shaky balance.

Today I’m paying for last night although the pain and exhaustion are worth it for such a good time seeing First Aid Kit a band that although I haven’t been following for long I’m now a big fan of and really love the music of, they’re also amazing live but despite some of the perks of going to a gig as a disabled person like queue jumping or getting a carers ticket for free I do wish I could still be near the front and not forced to be seated out of necessity.

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To alcohol the cause of and solution to all of life’s problems

A young drunk dino.

drunk (2)
A picture of me drunk with my mouth open wearing a black and white striped top

I’m a mouthy drunk, not the messy head down the toilet drunk of my early 20’s or the numbing my body with vodka so I could take action to numb my mind drunk of my late 20’s, I’ve never had a problem with alcohol as such more a problem with the things I do when I’ve had alcohol.

I don’t drink much now, chronic illness and medication have seen to that and I’m really only a social drinker but I’m also anxious socially and alcohol is a great way to reduce the anxiety and my tongue. When I say I’m a mouthy drunk I don’t mean rude or aggressive (passive aggressive maybe) more that my tendency to over share increases as my inhibitions decrease adding this to a habit of using humour as a way of making light of difficult subjects it can be awkward at best and messy at worst.

But this isn’t really about alcohol, to quote thirteen “being drunk doesn’t change who you are it just reveals it” I recently did a support plan at work about supporting my mental health including triggers, what I can do to support myself, how work can support me and what signs there might be that I’m struggling. One of the things I included here was changes to my relationships with colleagues, I feel I have some good relationships with some of the people I work with and we tend to have a laugh and joke about things including each other it’s banter but if I’m struggling or not in a great place mentally I can take that too far past it being funny or harmless.

The problem with banter is when mixed with anxiety and alcohol and a loosened tongue the less fun parts come out, I’m not incapable of being unpleasant or bitchy I’m certainly no saint but it’s not always just to be a dick it can and recently was in reaction to hurt, those annoying attachment issues rearing up again at unplanned social interactions with someone who was once a source of support who then let me down and lied to me more than once. I’ve struggled with change and boundaries but I’m not oblivious to them and I’m not naive I don’t need people to lie to me and give me false hope only to completely go against what they said, the worst part is although I’m angry part of me still misses them but I don’t want to not that I particularly want to be angry either but it would be easier to just be angry.

It would be better if I didn’t have to see people who let me down or at least have some control over the interactions but that’s not always possible and while the banter may have gone a bit far and the anger crept in aided by alcohol it didn’t messy and there were no close encounters with the toilet or trips to a&e.

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This indecision’s bugging me

One day I’m going to be sued for my constant use of song lyrics

 

AGM
2015 Georgiesaurus speaking about being a Youth Wellbeing volunteer

Recently things have been relatively OK I’m not saying it’s all wonderful but mentally I’ve been reasonably stable; I’ve had my first medication increase of Lamotragine and it’s hard to know whether it’s helping or not as this is probably the first time I’ve not been in crisis or extremely depressed when changing or adjusting medication, to add to this today I got a letter from the mental health team offering me an appointment in March with the recovery and support team presumably following on from the referral the psychiatrist I saw in December made. Yesterday I saw a friend I haven’t seen in a while and was telling her that I’d stopped going to the group I’d been attending due to it being a toxic and unsupportive environment that made me feel worse not better so with the recent mental stability getting the letter about the mental health appointment has just added another decision the think about, if I’m offered more treatment will it make things worse? Do I want it? Is it suitable or would I be better off considering something else I’ve been looking into?.

Life doesn’t come with a manual, I’m still trying to find out who I can complain to but for now I have to try and work things out myself and try and decide what the right thing to do in certain circumstances or what decisions to make when opportunities come along. One of the problems is that opportunities don’t always come along at the right time and that’s without the complication of not knowing when the right time is. For 7 months I’ve been working and earning on top of my benefits (all legit please don’t report me for benefit fraud) and it’s been the best, most intense, stressful, exhausting and rewarding 7 months, it certainly hasn’t all be smooth sailing with days where I was going solo bobbing up and down desperately trying to stay afloat and times when I was drowning and having 4:30 Friday meltdowns which involved texting my manager and almost quitting.

But 7 months in the grand scheme of things isn’t that long and in a perfect world I’d have more time to prepare and put myself in the best position to take on more not just skills wise but mentally too and feel as stable and secure as I can and ready to take the next step in moving off benefits another struggle here is my chronic illness I cannot manage full time and even if I was in perfect mental health I couldn’t physically cope on full time hours. I feel that so much of my self worth recently has been tied up in this job I’m told a lot how good it is that I’m working and being payed but as much as I’m enjoying having more money it’s more the feeling of being an equal on the same level as staff and things that come with it such as socials or attending the staff away day.

TTD18
2017 Georgiesaurus running a Youth information stand for Time to Talk Day

Sometimes I think I do too good a job at treating my mental health as something separate that I’m almost lulled into a false sense of security that comes with stability when realistically I still have to fight the urge to tell my manager everything I’ve done each day if he’s not in, let him know I’ve uploaded it onto the shared drive and where so he knows I’ve been working, of course I know that not only does he trust me to work alone but he doesn’t want to know every email I’ve sent or every webpage I’ve read for the workshop I’m writing. I’ve had a few relationship anxieties too despite MBT helping me with this it’s hard to explain to someone without mental health issues that people I’ve been close to or very attached to weren’t just people I worked with and that although they have moved on it’s still at times a struggle for me.

Although I’m handling it better I’m still not a fan of change and if anyone knows where I can hand in my resignation of adulthood please let me know until then I’ll be building a pillow fort.

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Body and mind

Shark bag
A picture of a shark rucksack looking anxious wih the caption “my face when people ask what happened to my arms”

*For the purpose of this post i’ll be using the word disabled to mean people with a physical impairment, I do consider mental health problems to be a disability but for clarity i’ll refer to mental health seperatly.

So my brain whirred into action last night thanks to an Instagram post by the amazing feeding of the fox. There’s a type of self harm that’s rarely mentioned; self neglect comes up in the context of depression but even I’ve never seen a discussion around the connection between disability or chronic illness and self harm or disabled people deliberately not taking care physical needs as a way of self harming. There are times when I say yes when I should say no, times when I will push myself because I don’t deserve to rest, times when I don’t take painkillers because it’s an indirect way of inflicting pain on myself, going to places that aren’t accessible or doing things when I’m not well enough.

Any disabled person will also tell you there is a big divide in the treatment of physical and mental health problems the two rarely mix and the mental health services are not always good at recognising the impact that physical disability or chronic illness can have on mental health or that the things that could benefit you mentally aren’t always possible physically (like going for a walk or having a bath), being told I should do more exercise after I’ve explained that I have chronic pain and chronic fatigue can result in me feeling lazy and making myself do things that result in pain or injury and an increase in fatigue and related symptoms. This is where the lack of understanding or knowledge of the connections between mental health and physical impairments is such a problem because for me it can be an increase in symptoms but for others it can be much worse.

Then there’s the other side the health services who treat your body as if your mind isn’t a part of it, although I’ve always been disabled to some extent in the last couple of years my mobility has got worse and I’ve been using mobility aids and dealing with more pain and fatigue.

At the beginning of 2017 I tried to access psychological therapy for long term health problems. I wanted help accepting my chronic illness and dealing with no longer being able to do the things I used to and things people my age can do, I wanted some support in balancing my physical health and mental health. It took several months for them to tell me that they don’t offer support for chronic pain, between that they rejected me because I was under mental health services (I was in the process of being discharged and they were completely different services), they then said my self harm made me too much of a risk and they said they didn’t think I’d be able to manage classroom based psychoeducation (thanks for that).

Last time I checked neither my body or my brain can function without the other yet services treating each are still very separate and mental health services are often not accommodating for people with physical impairments and often aren’t accessible there’s also an assumption that if you’re disabled and have mental health problems then of course you’re depressed because you’re disabled because who wouldn’t be?

Ableism unfortunately is still well rooted within the medical profession and the even within the disability communities there is still too much separation of physical impairment and mental health issues.

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The most wonderful time of the year?

IMG_6234
A rather appropriate Christmas card I saw last year

I don’t like Christmas, call me Scrooge or the grinch but i really don’t enjoy it. Christmas can be a really difficult time for so many people there’s a big emphasis on joy and happiness, being around family and friends but the happy family isn’t a reality for many, my family diminished over the years with elderly members moving into nursing homes and dying and now I have no contact with my immediate family though the family Christmases I did have often were rarely happy ones.

My mental health tends to deteriorate around this time of year the run up to Christmas really makes me stressed and anxious despite knowing rationally that the day itself will most likely be fine and that I’m actually going to spend it with two people (and two cats) that I’m choosing to be with. One of the struggles I have with Christmas is that most of the things I do to support myself aren’t an option, I’m off work for two weeks, there’s a big reduction in public transport so as a non driver I’m limited on how much I can get out, health services are reduced as are most other things like council services and housing association (not that my housings are any use when they are in) it feels like the world shuts down and the prospect of over a week with nothing to do doesn’t feel me with joy but anxiety.

I need routine and structure to stay relatively sane (emphasis on relatively) though this structure is mainly external as left to my own devises I tend to spend too much time in bed or watching YouTube but the idea of days with nothing to do and falling back into bad sleep patterns reminds me of when that was all my life consisted of endless days of nothing stretching out ahead of me with little point in knowing what day it was when they were all the same, where I’d stay up half the night and sleep half the day (this was mainly a way of reducing the amount of time I had to spend around my mother) although how ever much I need routine I’m not missing getting in at 8:30 to prepare for volunteer training.

IMG_6072
My attempts at festivity fairy lights wrapped around my crutches and stick

Christmas is also shortly followed by new year and the thought of change and reflection, I’ve been reflecting a lot recently especially on relationships as I mentioned in my last post, I’m tired of missing people especially people who don’t miss me who made promises they didn’t mean I don’t want to miss them anymore. In January I’ll be once again going through medication changes in an attempt to finally get off antipsychotic medication something I’ve been wanting for a while.

Disability, chronic illness and mental health problems don’t go away for the holidays it just means different challenges and things that can affect pain or fatigue and trying to manage pacing while still enjoying the day.

To anyone struggling this Christmas, with isolation, pain or mental illness you’re not alone this dinosaur sends love and solidarity. If you need support during the Christmas period the Samaritans are always there and comedian Sarah Millican will once again be doing #joinin on twitter for the 7th year running, have as good a Christmas as you can a big Christmas RAWR from The Perks of Being a Dinosaur.

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BoPo or BoNo (body positivity and disability)

IMG_2457
A collage of 4 photos of me with Domo-Kun a large brown Japanese TV mascot

 

I am not body positive, I won’t go into too many details about the concept of body positivity itself because there are many people who can explain it far better than I can but the short explanation is that it stems from the feminist fat acceptance movement and aims to encourage people to feel better about their bodies it has also become a campaign for inclusion for those that aren’t always included in movements surrounding self love like fat people, Queer and trans or genderqueer people, people of colour*, disabled people.

I fall into more than one of these categories yet for various reasons I don’t feel a part of the movement. For as long as I’ve been self aware I’ve disliked myself, I don’t say this for sympathy or pity and I don’t want comments expressing that, I don’t doubt that a lot of this is due to upbringing and bullying at school and at home. Ableism and fatphobia were part of my childhood, I’ve been disabled since birth and dealing with unrelated chronic problems problems for several years and mental health problems since I was a teenager.

I’ve struggled with my weight for years and for most of my life I haven’t felt like I fit in anywhere, not able bodied but not visibly disabled or as impaired as disabled peers; even in school when trying to express this feeling to the head of special needs I was faced with ableism, I also never quite felt comfortable with my gender and sexuality. For several years I fought for a diagnosis and explanation for my chronic pain and finally last year I saw a rheumatologist and had an MRI scan and while getting answers was a relief it meant the fight for answers was over and I had to accept that this is my life now. People often say there’s a period of grieving when you become disabled and I didn’t think this would happen to me but it has, I’ve been really angry at my body and frustrated when there are things I can’t do that a few years ago I could, its hard accepting my wonky, bendy, tired body and facing my limitations, I know I’m not severely disabled and other people have it worse but that doesn’t help me.

It’s really hard for me to feel any love towards my body when it lets me down, holds me back, doesn’t work the way it should it causes me pain and fatigue, my joints go out more than I do and I often feel like I’m 92 not 32. Sometimes it feels like not being body positive or embracing and accepting my size and shape makes me a failed feminist; its actually refreshing to see people I look up to who that are plus size who openly share photos of their body both as a job and on their personal social media say they’re not body positive, its not that I want them to feel bad about themselves its more that I respect their honesty. There are also disabled people and people with chronic pain who are body positive though I know it’s a process and not something that just happens overnight.

In some ways inclusion is improving, especially with a growing number of plus size models and general visibility of fat people who don’t believe they should cover up or hide their body yet there are still flaws especially with disability. Scrolling through Instagram looking at the bodypostive, bodyposi and bopo hashtags shows lots of plus size people yet there’s a lack of (visibly) disabled people and many of the messages that come with body positivity have undertones of ableism such as the focus on health and healthy is the new skinny which are also problematic for people who eating disorders or people in recovery from an eating disorder, then there are the concern trolls who target plus size people and fat shame them by acting as though they care about the health of an overweight person (lots of disabled people are overweight because of health problems not the other way around). Big media campaigns like the Dove real beauty also fail at disability representation, are disabled bodies not beautiful? Disabled people are also subject to intrusive questions about their bodies from being asked why they use mobility aids to questions about their sex life and even accused of faking having a disability.

real-women-dove
Dove Real Beauty

The lack of visibility itself is ableist and sends out the message that only non disabled people should feel good about themselves and how they look, for something that is meant to be about inclusion it really needs to be inclusive and not just for one group of people because that’s not how diversity works. Feminism itself is often accused of being only accessible for non disabled white cis middle class women who have received a good education (I’ll be ranting about that soon) in an ever increasing digital age the body positive movement could be one way to change that by utilizing social media as a more accessible platform.

*Other groups of people also face exclusion especially people of colour but no one wants another white persons perceptive

Awesome people to check out:

Fullerfigurefullerbust

Annika Victoria

Body Posi Panda

Glitter and Lazers

The Feeding of the Fox

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Chronically commuting

A picture of me with London Underground roundel face paint

There are temporary toilets at Euston, fascinating I know but this meant walking from one end of the station to the other a minor inconvenience for many but something simple that ate into my already rapidly reducing energy supply.
If my body had a battery symbol it would currently be edging towards red, unfortunately I can’t put myself on low energy mode and I still have to get home. A simple thing like using the toilet or accessing public transport can become a mission when you’re disabled, people who live with chronic health problems and limited energy will talk about the importance of pacing (something I’m pretty bad at I am however an expert at crashing and burning) but along with pacing comes planning. Most people plan a journey especially if it’s somewhere unfamiliar or timing is needed but planning the most accessible journey involves more effort than a journey from A to B.

The standard London transport tube map

I’m not a wheelchair user and I can manage a limited amount of stairs so I’m less restricted than many other disabled people but the London Underground is not disability friendly (I’m not unaware of the age of the system and challenges in making it more accessible) but after working out where I’m going the next step is seeing if there’s a lift and whether that’s for all the station or just parts of it, is there a reduced escalator service (my balance and coordination and using a stick make escalators a challenge), if I get on a train part the way along the line can I get a seat, how far will I have to walk from the mainline to the underground. Often I’m tired before I’ve even started.

The accessible tube map

Energy isn’t just expended physically though, social interaction can be draining, thinking, talking, trying to follow the flow of a conversation can also be tiring especially when you throw in the neurological problems I have as a result of a brain injury at birth which left me with hemiplegia (I seem to have unknowingly won some kind of anti health lottery) all these things can add to fatigue and despite my love of the city i can’t deny that Londoners are not the most patient people to be crammed on a train with.

People dismiss the idea of FOMO as another trivial millennial, Generation Y non issue but when you’re already several years behind your peers it’s hard to say no and slow down even when you should. Chronic illness, mental health problems, disability often do mean missing out of things or choosing one thing over another and in an age where we can see more and more of what people are doing with their lives without having to spend time with them it’s hard not to feel it.

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Better late than never (an introduction i suppose)

anime-me
A Japanese style drawing of a young woman’s head and shoulders with blue and pink hair and a piercing below her bottom lip

Because I was late even for my own birth I’m starting a blog several years too late. I’m Georgie (or Georgiesaurus in some parts of the internet), i’m chronically mental with the double luck of having both mental health problems and physical disabilities, I’ve been volunteering for a mental health charity for 4 years and have been involved in service user representation.

Too much waffle for twitter and too old for tumblr yet that millennial need to post my entire existence on the internet (having people to read it is more a bonus than necessity) a blog seemed like a good place to digitally dump the contents of my brain.

Aside from being chronically boring I have a slight obsession with a certain cosmetics company known for their bath bombs and the grumpiest DR around House MD, I live in London and spend too much time watching YouTube.

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