Tuesday, 16 July 2019

One Second Every Day - July: Week 2



Monday 8th July

I had a 15-ish minute seizure with my carer today and she's daily new to working in care and she's only just done her training but she did really well in dealing with it.
I was pretty tired after so my carer made me some lunch and a coffee so when she left I had that and had a nap before having to get ready to go to the dentist.
I was a bit anxious about having a new dentist as my ld dentist I've known ever since I've had teeth! But he was lovely and very understanding of my medical needs and asked questions and he loved my Stickman Communications file; he said I was very organised. And he treated me like an individual asked me what I want him to do such as in the event of a seizure etc. He checked my teeth and I found out that I still have a baby tooth! He took a mould of my mouth for a new TMJ brace, cleaned my teeth and took some up-to-date x-rays.
The rest of the evening was okay but I was struggling with my PTSD a bit at night time. I usually struggle at night but tonight is a bit worse than usual.


Tuesday 7th July

Still struggling emotionally a bit after yesterday. Had a bit of an extended lay in but managed to get dressed before 11.30am. I had a nice chilled out morning.
My anxiety started to peak in the afternoon, especially being alone with my thoughts. It helped having my carer at 2.15pm. It's my free ½ hour call that my care agency have given me because I was feeling lonely and isolated. I had quite a stack of mail as I haven't been to the Post Office in a while so we posted that and then when we got home my carer braided my hair.
I've had to order a new alarm box for my tablets as for the past few weeks mine has been resetting itself. The company have rebranded so instead of it being a mid blue colour it's now a jade-turquoise kind of colour.
This evening I've just been sat up on my room on my laptop mostly trying to get college work done.
I was going to work on a letter but it's getting late so I may just get into my pj's and start to settle down.

Wednesday 8th July

Had an accidental lay in this morning but I must o needed the sleep and despite being exhausted I struggled the get off.
My birchbox came today and there's some nice things in it. I've decided to stash away my sample sizes for rehab/my holiday.
I have no plans today except the home library lady coming to bring me some more audiobooks and to sort through my emails, college work (as I have a deadline) and I've got some ideas for blog posts I want to do and get some mail done but the latter two aren't urgent and I need to remember to pace myself and rest. (Still need to read more of Dr Myhill's book - about treating/managing M.E.)
For now I need coffee and to summon up the energy to get dressed.
Had a slow kinda day. I didn't manage to get any studying done due brain fog and fatigue as well as having a few mid-length tonic-clonic seizures and being post-octal and spasming afterwards.


Thursday 9th July

I had Bluebird for 2 hrs today. We went to Tesco to pick up a few bits. I got a folder to put my physio sheets in and I got some more mechanical pencils and on offer I found some really cute gold wire rose push pins for my notice board. We then went to The Range and we had a drink and we had a browse and I broke my craft buying ban and bought a few card making bits as I'm making some cards for the Cards for Warriors project.
Ive come home and I've chilled out for a bit. My plan for the rest is to prioritise college work and resting and if I'm able to cards making or letter writing to pen pals; then have a bath tonight. I was going to have a bath this afternoon once I'd recharged but I thought a night time bath would be better to get me ready for be as I hardly slept at all last night and didn't get off to sleep until the early hours despite being utterly exhausted.
Okay, so all I've managed is some college work (I didn't manage to answer all the questions, but I got 3 questions answered) and college have been great to give me a 2 week extension so I have until the 1st August which hopefully should be plenty of time.
Even though I've achieved "little" that's actually a lot. Like my physio said, sometimes the small things are actually the big wins and I need the celebrate them more.
I've treated myself to a travel handbag which should hopefully be a bit more stylish than my rucksack and I got some freebies. The bag is similar to the handbag I bought recently; it's from the same brand (hmm, vlog post idea?).
For now my bed is calling me. Hopefully I will get a better night's sleep.


Friday 10th July

Had an eye test at home this morning buy I didn't find it helpful as I've been struggling with my vision a bit more but they said my prescription hadn't changed, but they did refer me to the hospital. I called the CCG to see if I could get a second eye test (I had to do this as my eye tests are NHS funded).
I've also been struggling to get hold of my advocate and I found out today that she'd left so I left a message with my new advocate so hopefully she'll contact me as I'm having problems with one of my medications which I desperately need and I'm stuck in the middle needing the medication; my neurologist saying I need it and the clinical pharmacist at the GP practise refusing to prescribe even though I've had it prescribed before whilst on the medications I'm no which has confused and frustrated me. 
It's just little things like this that makes living with a chronic illness additionally difficult as you're dealing with the illness itself and then on top of that you're having to deal with carers and emails, phone calls, medication problems, appointments etc.
The warmer weather is starting to get to me. It makes my POTS worse so I've had to lay down more and it makes me more fatigued and brain fogged. Thankfully I have my extension on my college work and Dad's going to help me with a question I'm stuck on at some point.
I did have things planned to do today like letter writing but there's always tomorrow. The main thing I want/need to do is put my clean clothes away and do a little tidying up.
On some exciting news the bag that I ordered had been shipped and with it I got a free fold away rucksack and a set of 4 luggage packing cubes and when I bought my Samantha handbag I didn't;t realise I could of got some freebies with that too so I emailed the company and they said I could have them too so I'm getting a fold away shopper bag and a scarf too! I'm hoping the mini Jen bag with be big enough as I was going to get the Jennie bag but it said if you're under 5 ft 5" they recommend getting the mini Jen bag instead. But if I'm say going to London for the day I need a bad big enough for my headphones, a spare pair of trousers, my iPad etc.


Saturday 11th July

Not felt great today; more tired than usual so didn't get much done. I'm just hoping that I've got long enough on this deadline for my college work.
I had a seizure this evening, Dad was around though. We watched an episode of 'Police Interceptors' together.
All-in-all a boring day and not entirely uneventful.

Sunday 12th July

Set my alarm for 8am which I turned off, unfortunately I went back to sleep accidentally and I forgotten to reset my second alarm so that went off at it's usual time and I was utterly later for getting ready to going to church plus I was feeling pretty tired so I probably wouldn't have managed going to church anyway.
Had a nice quiet day.
I made a load more card for Cards for Warriors. I sat in the back bedroom and got a bit carried away and then I tired myself out.


Video Description

Monday: photograph of a crochet pattern page and the made item which is a circle in pink and turquoise yarn
Tuesday: Sliding open my orange supplements tablet box
Wednesday: time-lapse video of colouring in a cactus sticker using green felt-tip pens
Thursday: Stirring a bath of pink water
Friday: Adding tincture drops into a cup of water
Saturday: Turing on my aromatherapy diffuser the first press of the button a green light comes on and the second a red light comes on.
Sunday: Pages being printed coming out of the printer

Guinea Pig Appreciation Day 2019

Yep you heard it, today is guinea pig appreciation day so here's a post for you Flop.

Flop is my guinea pig. We used to look after him and his brother Flip (but Flip is no longer with us ☹)  but then Flop's owners got a dog who didn't get on well with Flop so we got asked if we wanted to adopt Flop.

Flop loves his veg. He has a little alarm clock and he starts weaking around 3pm for his fresh veg. I like how each day he had is different favourite like one day you could give him lettuce and cucumber and he'll go for the cucumber first then the next day you'll give him the same and he'll prefer the lettuce. He also loves munching on the grass. When you go and put him onto the grass he'll be leaning over your hand eating the grass before you manage to put him down! He also love his herb mix that I add into his dried pellet food. Like grass he'll be trying to eat it out my hand before I can put it in his bowl. And talking of his bowl he loves to drag it into into his house.

Flop also loves his time out of the cage. When you get him out for a cuddle he'll either splat himself out inbetween your legs or burrow himself into your arm and he'll be making little happy noises. He also likes having a run around the floor in the kitchen/diner floor.

He has a bit of an ASBO, usually for wrecking his house and for chewing newspaper, especially at mealtimes which my step-mum hates the sound of. When he's been cleaned out and put back into his cage he likes to have a mad 360º run around his cage and move everything around.

I love Flop so much. He's very calming. When I'm getting stressed, having a cuddle with him and hearing him chatting away really calms me down and I love all his quirks, even the annoying ones.

Wednesday, 10 July 2019

The Medical and Social Models of Disability

The Medical Model of Disability

The medical model of disability holds the view that people are disabled by their impairment (e.g. being a paraplegic or blindness); it looks at what is "wrong" with the person and not what the person needs. 
The medical model traditionally sees that if he impairment or illness/conditions was to be cured disabled people would fit back into society and that society doesn't have to change or accommodate for disabled people.

  • Forexample of a wheelchair user is unable to get into a building because it has steps the problems is seen that it because the person is a wheelchair user, not the fact that there is no ramp or lift.

One of the big flaws with the medical model is the is creates low expectation and leads to disabled people losing their independence, choices and control over their lives.

The medical model doesn't really work for many disabled people as many people's disabilities or chronic illnesses cannot be cured that they will also be 'disabled people'. If they cannot access pubic services, education, places of work and other venues this has a huge impact on their ability to access equality opportunity and it affects their quality of life.

Looking back through history disabled people where sent to special schools or long term residential care facilities which where often very medicalised. This places focus on the person's impairment or disability and how it can be minimised; it doesn't help the become part of society, or for the general public on how to include disabled people.


The Social Model

Many more people and organisations are now using the social model of disability.

   
(For film transcript of Scope's video click ⇨ here)

The social model of disability was developed by disabled people. It holds the view that individuals are not disabled by their impairment (e.g. being Deaf or having autism) but by society's failure to take a disabled person's individual needs into account, such as when designing a new building and ensuring things like steps free access, signing in alternative formats etc.
"Being Disabled is part of the normal spectrum of human life: society must expect Disabled people to be there and include us." - ALLFIE
The model is focussed around the belief that people are disabled by barriers in society rather than by their health condition/illness.


The social model states that people become disabled because of barriers in society and not by their impairment, disability or health condition.

Barriers could be physical should a building not having a ramp and full wheelchair access, or a service not having a textphone number. Another barrier could be caused by a person's attitude towards difference, such as assuming that a person with a visual impairment cannot do anything for themselves.

Some of the different ways the Social Model see that individuals are disabled by society are:
  • Physical barriers
  • Prejudice
  • Labelling and stereotyping
  • Ignorance
  • Limited financial independence
  • Not having information in alternative formats
The social model helps people to recognise the barriers in society that make life harder for disabled people; removing these barriers creates better equality and offers disabled people more independence, opportunities, choice and control.
"If modern life was set up in a way that was accessible for people with disabilities then they would ne be excluded or restricted. The distinction is made between 'impairments', which are that individual problems which may prevent people from doing something, and 'disability', which is the additional disadvantage vested by society which treats these 'impairments' as abnormal, thus unnecessarily excluding these people from full participation in society." - Mental Health Foundation
The social model of disability works much better for disabled people compared to the medical model as it means that disabled people can have full access to a wide range of facilities including public services like libraries, hospitals, leisure centres, cinemas, retail shops etc, as well as education and work and have just as much equal access and opportunities as non-disabled people and be able to live equal lives.


Examples of the Social Model of Disability in Action:

  • A child with a visual impairment wants to be part of the book club at school. The Social Model's solution would be to make the book available in a format best suited for the child's needs, whether it a be in large print, braille or audio format.
  • A wheelchair user wants to access the public library but there are step into the building and stairs inside. The Social Model would ensure that there is ramp access into the building and inside there are lifts to other floors and that an accessible toilet is available. They would also have a lowered service counter and have staff to assist individuals to reach for items on shelves.
  • A doctors surgery has a new person sign up as a patient; this person is profoundly Deaf and using BSL to communicate. The Social Model would ensure that there is a textphone system installed so the individual can independently make appointments and the GP Practise also ensures that there is a BSL interpreter is available whenever the individual has an appointment. 


Changing Attitudes Towards Disabled People

Negative attitudes towards disabled people which are based on prejudice or stereotyping can stop disabled people from having equal opportunities in life - this is sometimes referred to as 'disabilism'.

Examples of negative attitudes include assuming thoughts that disabled people can't:
  • Be in employment
  • Be in further or higher education
  • Live an independent life
  • Have a family
  • Advocate for themselves
  • Individual can do little for themselves and must have a carer with them at all times


References

Tuesday, 9 July 2019

One Second Every Day: July - Week 1



Monday 1st July

My carer was amazing today. We're still without hot water but my carer kept filling the kettle (we brought the kettle upstairs) so I could have a very shallow bath and we got my hair shampooed (we used leave in condition so I wasn't rinsing my hair in sudsy water and I got a wash and I felt much better emotionally for getting a wash and having clean hair.
Mid blowdrying my hair I had several seizures and I came round but then went unconscious again and had a few more seizures and my carer felt with it really well. I know her quite well but she's never had to deal with a seizure like that before. We made the decision to take some diazepam to try and prevent any more episodes, especially as I'd be on my own until Dad got home from work around 5.30pm.
My carer made me a coffee, a juice and a sandwich so I could stay safe of the sofa and I let CareLink know so they could keep an keep an eye out.
I spent the afternoon resting and watching TV and I finished off a blog post about disabled parking.
I've now just done a bit of college work but it's hitting bedtime. I'm pretty sure I'm going to need an extension on my deadline.
I'm now just going to get into my pj's and settle down to sleep and hope I get off okay and sleep well.


Tuesday 2nd July

The day wasn't too exciting. This evening I went to the autism café group and I took one of my Bluebird carers with me. I was pretty anxious. The theme was 'Hobbies' this month. One of the members of staff helped me have a conversation with someone else who was new. It was quite noisy and busy and I got a bit overwhelmed and my myoclonic seizures started up so me and my carer spent a bit of time in the quiet room; me laid on the floor (it's a seizure/POTS things - you end up randomly laying down on floors inc the middle of shops).

The café finished early and it was nice to leave and get some quiet. As I had some time left with my carer we went upstairs and she painted my nails for me which I enjoyed as I like having pretty nails but it actually helped me to calm down too.
The rest of the eying I just spent resting.

Wednesday 3rd July

Had an appt at 12pm. Came home and chilled out; watched TV, did some letter writing then had a nap. Woke up and decided to get because a) I didn't want to not sleep tonight an b) I needed to take my tablets and have something to eat.

I didn't do much for the rest of the day.

Thursday 4th July

Had Bluebird as usual and I'm getting to know my new carer. I then  had a little rest and a snack after she left and I called my GP Practise to double check I had an appointment which I did.
I saw the nurse about my asthma which has been worse and as well as my inhalers she's put me on some tablets and I'll go back again to see if they've helped or not.
I then came home an had another rest (trying to remember my pacing though still have to work on it fully and I need to read a bit more of Dr Myhill's and my other 'Guide to Living with M.E.' book).
You may be thinking, reading this why I res so much, well, for me, it's a bit part of managing my symptoms. If I didn't rest so much I would just crash and end up in bed for a week unable to do very little and even with all this rest I still really struggle and end up spending time in bed.
I've managed to achieve getting a bunch of my distance learning course done and make a start on my communication cards but now my brain had filled with treacle. I'm now in bed ready to settle down for the rest of the evening and on a side note I must add how much I love my electric bed elevator!

Friday 5th July

Haven't done much today. Done my usual pacing between resting, physio, watching TV, blogging stuff and college work.
I've really enjoyed this evening playing a couple of games of Rumikub with Dad. It would be nice if we could do more of that, hopefully that can happen when the summer holidays come.
I'm now just chilling then I'm going to wash my face, get into my pj's and settle down to bed.


Saturday 6th July

It was a tired kind of day. Dad said to have a sleep this afternoon which I did and I was going to have a bath but I wasn't feeling up to it.
This evening it was just Dad and I so was watched a film called 'American Sniper' which was good but the ending was quite sad. It's a film I'd recommend.
By the time the film had finished it was time to go to bed.

Sunday 7th July

Had a nice quiet morning then in the afternoon I went out to Bring Garden Centre and I bought my first Christmas present! I know it's far too early but I saw it and it was just perfect for my friend.
Got home and was exhausted so just rested for the rest of the day but managed to get some college work done.


Video Description

Title page for the month saying 'July' decorated with summer themed stickers
Monday: Flop poking his head out the cage door
Tuesday: My laptop and an open text book
Wednesday: Spraying a puff of inhaler
Thursday: Photograph of GP waiting atrium
Friday: Dad and I playing Rhumikub and Dad laying down some tiles
Saturday: Cutting out some text on paper
Sunday: Photograph of a letter I've put together with a sticker-by-number picture, coffee sachets, a word puzzle and other bits.

Thursday, 4 July 2019

♿️ Disabled by society

So I wanted to do a bit of a different kind of blog post and open it out to comments from people with a wide range of disabilities and access need and their experiences of where they not been disabled by a health condition but instead have been made 'dis-abled' by society.


Tiri...
"There have been lots of situations where I've been disabled by people refusing/limiting access because of my assistance dog."

Natasha...
"Recently I had to vote (which is mandatory in my country) and the local voting booth wasn’t wheelchair accessible... they ended up bringing me the voting papers and putting a box on top of me in my wheelchair. Let’s just say it was embarrassing and ridiculous that they are setting up polling in places which aren’t accessible - and worse... this was at a school! So if a parent wanted to watch their child perform a play or something and that parent uses a wheelchair, they wouldn’t have access to watch other than from outside. Plus I’ve had to miss out on school interviews before as they’re held in areas which aren’t wheelchair accessible. Basically, I always question, would I actually be disabled if the world was completely accessible for all people and not just able bodied people? And why are we still creating shops, workplaces, schools etc. That aren’t accessible? It’s discriminatory to say yes, we know you won’t be able to access, but it’s cheaper so we are going to do it."

Kel...
"I have Dyslexia and Irlen Syndrome and when at Uni asked for any 'in class' reading to be provided in advance so I could 1) make it a format that worked for me 2) not feel super stressed when everyone accept me had finished reading. I had one particular teacher who though asked many many times never provided me with what I needed. I ended up not doing well in the topic, feeling super stressed in the class, and I became seen as 'disabled' for constantly asking for what I needed. Surely emailing me some reading isn't too much to ask for?!"

Deaf Girly...
"I think the most marked one is when I want to plan my social life and things like the cinema and the theatre do not allow for spontaneous decisions. Captioned performances are few and far between. Date nights cannot happen at weekends or normal times if you want to see a movie and the choice of movie is not yours."

Sage...
"A lot of buses in my area have stairs instead of ramps so I can’t get on them when I’m with my wheelchair. Another thing is that my apartment complex has doors you have to pull to get into the lobby which means I can’t enter myself as the door itself is very heavy and impossible to open when i’m in a wheelchair."

Zoë...
"I had an incident once where my train was delayed and when I got to the station there was no staff to assist me off the train. With difficulty if I hadn't;t of gotten of the train I would have headed back to where I came from with no ticket and no way of getting home. Train conductors and other member of staff are crucial and proposed cutswould hinder accessibility as well as safety for disabled travellers."

Caroline...
"I use a wheelchair for longer distances but I find it hard to know with taxi's if my wheelchair will fit in the trunk ahead of time."


Holly...
"I often find myself in situations where passenger assistance don't turn up when I'm travelling on the train; this happens more often than not. In terms of busses it would be great if we had talking buses where I live, this would really help."

Deafie Blogger...
"Inaccessible health services where they say you can only call to make appointments or enquire about healthcare or lack of access at GPs and hospitals (e.g. audio announcements) no support at all!" 

Breanna...
"I've had several instances where cars would park on the dropped curb. I can not get to the building if cars are parked on the dropped curb. The dropped curb is essential to getting to where I want to go. Don't park on dropped curbs!  You may be limiting someone's access if you do."

Johna...
"I've had lots of instances where I was denied access or limited due to societal low expectations and/or barriers. For example, I have been denied rides with rides sharing services (i.e. Uber or Left) due to my guide dog. Also, I am often forcibly offered a wheelchair in airports even though I'm perfectly capable of walking, I just need a guide as I'm legally blind."

Christina...
"When I was recovering from surgery I was having to use a wheelchair full-time with no weight bearing. I went to a conference at a big medical school on EDS. They had a bunch of signs leading to the disabled parking spaces in the parking garage, so we followed the,, got out, got me in and then there was a curb in front of the elevator to the building. My mom had to get me onto one foot and lift the wheelchair while I hopped on one leg... and this was a medical school!"


Lauren...
"Since having Crohn's Disease/IBS it's literally hard to function on a day-to-day basis. The challenges I face as a chronically ill individual is being able to scope out the nearest bathrooms."

Ross...
"A good friend once said to me "it's not you that's disabled, it's it's the world we live in that lets you down". These words have stuck in my head over the years and have proven to be true on many occasions. As a full-time wheelchair user, I am often faced with anxiety when travelling to new places due to the uncertainty of their access.This is why I am now proud to be a Champion for AccessAble, an app that provides detailed accessibility guides for disabled people. Flying on an aeroplane is a big 'bug bear' of mine. I would travel more if it wasn't for the difficulties faced in boarding an aircraft. It's 2019 and the fact wheelchair users cannot stay seated in their chairs blows my mind - considering we can now drive adapted cars and easily travel on buses and trains. Dignity pals a he part in this. A few years ago i had a falling out with one airline after they refused to load their disabled passengers on board first. This rested in 150+ people watching me struggle to transfer, and be manhandled by special assistance staff. The word humiliating is an understatement. Don't even get me started on the poor access to toiling etc once actually on the plane. Staff training is so important in situations like this. Society doesn't always think about those with disabilities, or consider we actually have feeling too. All that was needed in this case was a bit of time and privacy to transfer, but once again is is the environment that let us down."

Holly...
"What I find difficult is people's perceptions, obstacles that are in my way, inaccessible buildings, unequal access at gigs, common misconceptions and struggles in education and employment."

Natice...
"I find it difficult going into a shop and getting stuck due to displays in aisles etc (my biggest pet peeve that I face all the time. Also, high shelves in shops and steps into shops so you can't access [the shop] to begin with, shops thinking they're being disabled friendly by having a foldable ramp but you have to buzz and ask for it and they tutt and sigh and make you feel like it's so much hassle."

Wednesday, 3 July 2019

New Diagnosis // Autism

Related image



So recently I've had the results back from the Adult Autism Service. In January I had a pre-assessment to see if it would be beneficial for me to be assessed for autism and in February I had the full assessment for autism. Then on the 17th June I had a follow-up appointment to discuss the outcome of my assessment and I was officially diagnosed with autism.

I don't see my autism as a 'new' diagnosis as I've always been autistic from day 1, but now looking back and even now I can identify aspects of my autism. For example taking phrases literately like the time my teacher in year 4 told me to 'pull my socks up' and how when I was in Reception class I like to sit and play under the table and how I struggle socially so much, even now.

My Dad being a teacher always wondered if I could be autistic.

Getting officially diagnosed has helped me a lot. 
It's allowed me to understand why I am the way I am and why I engage in certain behaviours like stimming (repetitive physical movements and sounds like for me to tap my hands on my legs especially when I'm anxious), or find social interaction and social rules far too confusing and difficult and why eye contact feels awkward even though I know it's polite to do and most importantly that there's nothing wrong with me, my brain is just wired a little differently.
It's also given me access to new support through the Adult Autism Service. I'm currently waiting to be assigned a key worker who will help me to understand autism and how to cope and manage the things I find difficult. The service also has psychologists, assistant psychologists, mental health workers and a psychiatrist. In September they've organised a MDT meeting to discuss my care as I have my mental health issues alongside my autism so they want to discuss how to move forwards with my care. Personally, and my mental health care co-ordinator agrees that probably the best thing for me is rather than having two teams (autism team and mental health team) I's be under just the autism team which would be less confusing for me. I also prefer the model of working at the Adult Autism Service which is person-led rather than diagnosis-led like it is within mental health services. There's also no time limit on the autism team, I can dip in-and-out as an when I need their support whereas with mental health services it is just a every so often phone call and if I moved to the CMHT* it would just be an occasional chat over coffee whilst I wait for EMDR therapy and then once I have the EMDR I'd most likely be discharged as it a treat and discharge model of care now and for me I feel I need more long-term mental health support.
*CMHT - Community Mental Health Team

The autism team also runs social groups and yesterday I went along to my first one. I took my carer with me just in case, but it was also someone familiar for me. The social group I went along to yesterday was the Autism Café; each one has a theme and the theme for that one was 'Hobbies'. One of the members of staff helped me have a conversation with someone else who was new. It was quite noisy and busy and it did get a bit overwhelming so I spent some time in the quiet room with my carer.

(I get sensory overwhelmed for a number of reasons a) with my FND I cannot process a lots of stimulus; b) with my M.E. lots of sensory stimulation is energy zapping and painful and c) with my autism it's very anxiety provoking and overwhelming)

The group finished early and I enjoyed leaving and gaining back some quiet. The group wasn't quite what I imagined. It was very difficult on the sensory side of things which sort of puts me off going to another group again (they have an event every 2 weeks). So anyway, the group finished early so we had a little bit of spare time when we got home so my carer painted my nails for me and it was a nice activity to help me calm down.

All-in-all I feel positive about my autism diagnosis and I look forward to getting support from the autism team and now when I'm getting anxious about things like changes to my routine I can explain to others that I have autism so they can support me without me just thinking I'm being demanding as to why the nurse is running 16 minutes late.       

Monday, 1 July 2019

Hot topic: Blue Badge Parking


Disabled parking and Blue Badges are currently a hot topic in the disabled community at the moment.

Currently Blue Badges are available to people with disabilities that affect their mobility, these people include wheelchair users and those only able to walk very short distances.
"IN MY OPINION, I've alway's seen disabled parking as a lifeline for people who have physical mobility issues."  - Ross
Disabled parking spaces are located nearer to shops and have extra space around the car to allow people to get out the car more easily, such as to open the car door fully open and have assistance getting out or to get into their wheelchair or for ramps or larger Wheelchair Accessible Vehicles (WAV).
(People who are visually impaired are also currently eligible for Blue Badges.)

However, from August 30th 2019, people with hidden disabilities such as dementia, autism and mental health conditions may also be eligible for a blue badge. This is the biggest change to the Blue Badge scheme since the 1970's.

Whist I'm not against people with mental health conditions and autism; having autism and mental health problems myself, I don't see why these people need a Blue Badge. 
I can understand say for a parent with a child with autism who isn't aware of dangers would be helpful, but why does someone with depression or anxiety need a Blue Badge?
The new criteria will extend to people who:
  • Cannot undertake a journey without there being a risk of serious harm to their health or safety or that of any other person (such as young children with autism)
  • Cannot undertake a journey without it causing them very considerable psychological distress
  • Have very considerable difficulty when walking (the the physical act and experience of walking
A person who is in extreme psychological distress does not need the extra space around their car and though they are distressed, this may not affect there ability to walk across a car park, and there are still plenty of spaces nearby to shops, retail parks, shopping centres, cinemas, high streets extra that don't have the excess space a Blue Badge space has. 

Blue Badge spaces are already seriously misused. My local cinema has 6 disabled parking bays; last time we visited none of these spaces where available making it difficult for myself who needed to be close the the cinema entrance and have a dropped kerb. 4 out of those 6 spaces where misused which no Blue Badge being displayed. Bringing this to the attention of the duty manager I was told they only provide disabled parking spaces as a courtesy! These spaces are not a courtesy, or a luxury or a perk of being disabled as many non-disabled people see them as; they are an essential. Without a disabled parking space I my Dad or my carers would have great difficulty getting my wheelchair out of the boot; I would have difficulty getting out the car, and if it's a very short journey, like nipping into the pharmacy where I would just use my crutches and I can sit inside I would very much struggle to walk from the car into the store as I can only walk short distance without increasing my levels of pain and fatigue and should I say have a seizure I need to be close by to the car.

I can understand giving Blue Badges to people in the last point in the quote about from GOV.UK as that still in my opinion would be classed as a mobility impairment as conditions like M.E. and FND (I'll use these two conditions as an example having them myself so I con't make a mistake speaking about them from my experience of having them) as my M.E. causes severe levels of fatigue and pain so walking even short distances is very difficult for me so I use a wheelchair or crutches and therefore need to park close by to shops and with my FND again I struggle with my mobility as my brain-leg connection's don't work so working takes a great deal of effort, and results in fatigue and my legs turning to jelly so again I use crutches or my wheelchair to get around to alleviate my symptoms and walking difficulties. But even those with M.E. and FND who don't use mobility aids may have difficulty with walking longer distances and so they would benefit from a Blue Badge and their mobility difficulties would be reflected in their DLA*/PIP* (or other benefit such as Attendance Allowance) which is what most local councils use to determine whether a person is eligible for a Blue Badge. However, people with conditions like mental health issues would most likely have little or no points on their mobility component on their DLA/PIP award. If I took my mental health problems or my autism on their own I would get no points on my PIP as they don't affect my ability to walk and probably parking further away would probably benefit my anxiety rather than parking close by and dashing in and out the store and when I'm unwell or struggling with my mental health/autism I would have someone with me to ensure I'm safe walking in the car park incase I run off, become overwhelmed or had a meltdown. Now, this is just my experience; it could be different for others.
*DLA - Disability Living Allowance      *PIP - Personal Independence Payments

My two biggest concerns are
  1. How will eligibility be policed, like for example currently it is usually assessed by the points you have on the mobility component of you DLA/PIP award
  2. People taking advantage and exaggerating say their mental illness to get a Blue Badge
  3. Currently there is a lack of Blue Badge spaces and gross misuse of them (from my experience) and with the roll out of an increase in those becoming eligible for Blue Badges it's going to make it even harder for those who need the wider spaces around cars to find a parking space. If the government gave out more funding for extra spaces to shops, hospitals, town centres etc then great - alternatively, they could turn existing normal spaces into Blue Badge spaces so those with Blue Badges who don't need the extra space e.g. those with mental health problems that would be a good idea too.


Reference:


One Second Every Day - June: Week 4


Monday 24th June


Not much to today and pretty uninteresting.
Had Bluebird for a couple of hours and we did our usual Monday things - hoovering my bedroom, dusting, getting a shower. I was pretty exhausted so my carer made my some lunch just before she left so I could stay laid on the sofa.
Trying to keep cool to prevent any POTS moments.



Tuesday 25th June


Had home physio at 11.30am. I'm really glad that I switched to home physio. A) it is a lot easier as I don't have to bother with patient transport. I can have a nap as soon as my physio has left and B) it's been good to get a new perspective as over the years I've always had the same physio at the hospital.
Today my physio brought me different sets of exercises: gentle exercises for bad days, a little bit more challenging exercises for bad days, sitting exercise, easy exercise for an okay day, exercises for a good day and standing exercises. We also have our goal from last week like being able to stand to make a hot drink and being able to push myself more in my wheelchair but I haven't been out the house but I'm hoping to be well enough to go out with Bluebird on Thursday so I can have a go at pushing myself a bit more, but break it down so I push myself of a bit and then my carer will take over and then I push myself for a bit and so on so I don't crash but also so I can build up my muscle strength and give me some more independence.
We're going to meet up again in a few weeks to see how I've been getting on.
I called up Bluebird to book and extra 2 hrs next week to go to the Autism Café. One of my Bluebird carers last week suggested to me about Bluebird taking me so I will feel safer should I have a seizure/fall/faint eat but also just to give me a bit of confidence, so I've done that.
I'm now just waiting for my carer to come at 2pm and it's now 1.36pm.
Had a nice ½ hour with my carer.
Spent the rest of the day resting, watching TV and doing a little college work. 




Wednesday 26th June


I was meant to have a GP and then a nurse appt this afternoon but the computer system is down so my Dr's appt has been cancelled which is a bit annoying but I still have my nurse appt. 
Went to my nurse appt, as my asthma's been worse I have to go back to see the nurse practitioner. I managed to rebook my GP appointment.
Got home and had something to eat. I watched TV and had an accidentally little nap. Came up to my room and did some college work but I was still feeling tired so I slept until Dad woke me up for tea. After tea I watched TV for a bit then had a quick bath and into my pj's.
Coin out the bathroom I had a few seizures. Exhausted I crawled into bed and nodded off.




Thursday 27th June


Had Bluebird 11am-1pm today. We went to Tesco's to pick a few bits up and I came under budget. Got a drink as I was thirsty and forget to bring one with me. We then headed off to get my bus pass renewed. I've only used my previous one which is valid for a year once or twice but it's handy to have one just in case, such as if I need to use Phone 'n' Ride.
Home I got some lunch and I'm just putting some mail together but I'm getting tired so I may have a quick tidy and then go lay on the sofa.
Managed to get some college work done this evening but I'm was getting a headache.
I'm having a bad evening pain wise and not much seems to be helping.



Friday 28th June


It's just gone midnight and I'm still awake with high levels of pain and I just can;t get comfortable to fall asleep and even though I'm tired the pain levels have turned me onto 'awake mode'.
Had a restful day. My mood started to wobble in the afternoon; not helped by the stress of my holiday and rehab. I found out that the local CCG are only holding my funding for 6 months and if I don't go into rehab n that time my application for funding has to be redone! So that takes me up to October which might clash with my holiday at the end of November as rehab is a minimum of 12 weeks. 
I wasn't't sure what to do - move my holiday or get more expensive travel insurance that covers cancellation should I end up in Leeds. I went for the latter and after I while I was happy with the decision as the Summer holiday a) I didn't fancy and b) where more expensive so I've saved money by opting for the more expensive travel insurance and if I do go on my holiday it will be a themed week I'll enjoy (Historical Landmarks).



Saturday 29th June


Stayed in my pj's until about 2 then went to get a wash and the hot water tank is broken! 
Forgot to pace myself and ending up crashing on the sofa, and then my step-mum's sister and her family came round as it's my step-mum's birthday so there was 3 very hyperactive noisy children running round the house - not helpful at all!
My Dad and step-mum went out for dinner so it was just me and I was not feeling well at all and ended up having a fall went I went to the loo (when I'm not feeling well I either glue myself to the sofa or my bed) so I let CareLink know I'd had a fall but I was okay fall wise but I wasn't feeling well that evening.
I'm now back in my pj's and in bed.
My thoughts are racing a bit as they do time-to-time. I get frustrated with being so limited by my health this is where social media doesn't help at times, but online it's a extremely selective glimpse. It's just a shame as when you're so isolated, sometimes online interaction is all you have.



Sunday 30th June


Slept better-ish, took a while to drop off, but not as long as other nights and I did wake up around 3.30pm but after a while I nodded back off.
I forget to set an earlier alarm clock so when my alarm went off at 9am I turned it off with the intention of being away and getting out of bed, unfortunately I nodded back off, fortunately I have my second alarm which went of at 9.30am and this time I did get out of bed.
I got dressed, had my meds and breakfast and decided to take my morning coffee out into the garden to drink. I felt okay so wen to church with Dad.
Since I've been home I've been on my laptop but I'm getting a bit tired so I'm going to make myself a coffee and settle down on the sofa.
Managed to get some college work done before having an episode of seizures and spasms.
I then laid in the quiet until Dad and my step-mum wanted the TV and then I came upstairs and I had to redo the communication cards I'd started doing on my laptop.
I'm not exhausted and ready for sleep. Not sure what I'm going to do about my Monday shower with Bluebird as we still don't have any hot water.


Video Description:

  • Monday: Pushing down the plunger on my cafetière travel mug
  • Tuesday: Writing a letter
  • Wednesday: My watch changing the time to 10am and the alarm going off
  • Thursday: Peeling a sticker off my colour-by-number book
  • Friday: Putting the final stick on my sticker-by-numbers picture which is of a peacock 
  • Saturday: Turning on the tap in the bathroom
  • Sunday: Opening my denim medical filofax

Friday, 28 June 2019

Chronic Pain Poem

So I'm no good at poetry except acrostic poems and I haven't posted in a while so I thought I'd use my painsomnia to do a post on pain.

C is for crying, because nothing is easing the pain
H is for hurting, not just physically, but emotionally and socially too
R is right, wondering what the right thing is to do
O is for ongoing, because that is what chronic means
N is for no sleep, because it's hard to get comfy
I is for invisible, because my pain can't be seen
C is for cost, the cost of living in permanent pain

P is for pause, your life lived on pause because of the pain
A is for all over, when every part of your body hurts
I is for ignorance, when people don't understand
N is for never-ending, when will this pain end?

One Second Every Day - July: Week 2

Monday 8th July I had a 15-ish minute seizure with my carer today and she's daily new to working in care and she's only just d...