GUEST POST by Eva Luna-Rose on the #iAm♿️ Project & Using Mobility Aids

I don’t know anyone that uses mobility aids that is my age - I used to push my step gran to the cinema but that’s it. My experience with wheelchairs, walking sticks, crutches and rollators has been with passing acquaintances, no one that has deeply impacted my life.

My hands started shaking last October and by March I couldn’t stand by myself. It was too quick for me to process really so I just kept getting on with it.
Taking the dog out for a walk I started by using hiking poles for balance and hoped no one would see me. After getting blisters and shoulder ache, I borrowed that same step gran’s canes. She has loads but none of them were the same so they were different heights and drastically different patterns.

So after too long I bought my own sticks and cried. I didn’t want to have to use walking sticks, I didn’t want to look different, I didn’t want to be able and I didn’t want to be in pain. But then I came to the point where the sticks weren’t enough and I cried some more. I eventually gave in and bought a wheelchair.

It was the best decision of my life. I cried when I got in it and moved around because I was free. My knees weren’t in as much pain, I could keep up with everyone else, I could leave the house. I COULD.

And it made me realise that I loved my wheelchair straight away. But before I had it, I was terrified. I started the #iAm♿️ campaign to help not other people deal with how they felt about their mobility aids, but more selfishly for myself.

But it has grown into more than that. I get people I’ve never met messaging me, thanking me, for sharing stories about people with disabilities - helping them realise that there isn’t anything to be afraid of.

Getting a mobility aid isn’t giving up. It is taking control. The #iAm♿️ campaign has been fundamental to how I view myself as a wheelchair user, but it has also opened my heart to so many more stories and amazing people - that it’s changed who I am as a person.
I hadn’t ever come across a place to share what a mobility makes us feel in a positive light because we are taught that disability is a bad word. It is not. #iAm♿️ disabled and #iAm♿️ proud.

Eva Luna-Rose,

@wheely_good_time

#iAm♿️ Project website

Appointment with Professor Edwards // July 2019

I had another appointment with Professor Edwards this week. I see him every 6 months. He's my neurologist and he's specialises in FND (Functional Neurological Disorder); he's based at St. George's Hospital in London.

He's really lovely, understanding and easy to talk to. He's glad I've now got funding for the neuro rehab in London and he's going to speak with the CCG to extend the funding hold for longer than 6 months as we can't afford to wait to have to reapply if I don't get a bed by October.

I took to my appointment to main symptoms that have been bothering me (rather than all my symptoms as we'd be there for hours). I said my speech has become more difficult as has my memory loss and cognitive function. I also brought up that my headaches and migraines have been worse. Another thing I said I was having issues with was my medication so he's going to speak with my GP so hopefully I can get my diazepam re-prescribed as I wasn't needing so many ambulances when I had that. I also spoke about the social and emotional struggles and how I'm really struggling to get a care packages and I'd like to eventually move into a my own place with a care package so he's going to try and get me a social worker who can try and sort things out but who I can also talk to.

The main thing though is getting me to Leeds who will help me with symptom management, and try and lessen some of my symptoms or the severity of them or just help me manage them better.

Blogging with a disability/chronic illness

You may see my blog all neat any tidy but on my best dash board I currently have 81 draft posts and 12 scheduled posts. I does look a bit like organised mess, but at least it's all in date order and I can see the dates.

The drafts are either post ideas that have come to my mind that I want to write about at some point so I make a post with the heading and leave it blank like 'Grieving for my health' to work on at some point or that I'm currently working on. Or they're awareness events that are coming up so they're almost like reminds a) of the event and b) to start working on the posts for the event at some point or that I've already made a start on typing e.g. 'Jeans for Genes Day'. 

The scheduled posts are posts I've finished typing and I've set it to automatically publish on a certain day.

The only post I really do 'live' is my weekly journal which I type as I go through the day or I write at the end of the day depending on how bad my memory is that day.

I can only manage to type in small amounts which is manageable for me. I often write week or months ahead of times for awareness events posts, I even have some things that I have a reminder for to I'm working on or have even finished and scheduled to publish next year!

Having bad memory loss at times and being able jot down post titles and leave it to work on another time and being able to work bit-by-bit and save what I've done is really really helpful to me. This especially good for me as typing is quite tiring as I'm having to think and research etc and alongside that typing can be painful for my hands with my hypermobility. Unfortunately my Dragon (voice activated software) doesn't work on this side of my MacBook.

Some blogger have a set day in which they publish. I personally like to spread posts out so  I'm not having a time where there's say 6 posts all close together and then the following week there's only 1 post (this includes gusts posts). 

May was a busy month with it being M.E. Awareness Week/Month, Mental Health Awareness Month and EDS/HSD Awareness Month so I had posts of my own put my journal posts alongside guest posts so using a calendar I planned how to organise posts.

So, here are some of my tips for blogging when you have a chronic illness/disability:

1. Plan, plan and plan!
2. Keep a note for post ideas and what you want to write about - you can either keep it in a notebook or on the 'behind the scenes' of your blog (I have so so many draft posts on the go. I just jot down a title, a few notes and links and then I can go back and keep adding to it until the post is ready to be published, or if it's for a particular occasion I try get ahead of schedule and then set it to auto publish on the day).
3. Get ahead of time - days, weeks, months or even a year. This is especially helpful if you're planning to write for awareness events.
4. Write in amounts that are tolerable for you; even if it's just a paragraph at a time. Don't push yourself beyond your limits as blogging will just start to feel like a chore rather than something you enjoy doing.
5. Have a tidy up of your blog to help make it more organised which can help you have a tidier mind.
6. Research, look at other blogs, current hot topics or places like Pinterest for inspiration for new blog ideas to to find out about the awareness events you want to write about and raise awareness about.
7. Keep it simple. You don't always have to write a long saga of a blog post.
8. Be mindful of the time. It's easy to get lost and into typing and forget about the time. Remember to take breaks.
9. If you feeling uninspired or you're not enjoying blogging take a break.
10. It's okay to not set targets, e.g. to publish 2 posts a week every week of the year. Be realistic, and if you miss a whole month that's fine.
11. Don't just blog about health and disability, this may be your main focus but don't let it take over. Your blog about your and your life and there is more to you than just your illness. Write about your hobbies, days out and other fun things. I've done posts for 'Love your Pet Day' for example.
12. Remember to look after you and your health first.

One Second Every Day - July: Week 3 // 2019

👩🏼‍⚕️ Monday 15th July

Had an appointment with Dr Sally today. I enjoy our appointments as even though I'm seeing her privately I like how I get quality time to sit down and talk and as she practices Integrative Medicine she looks at me as a whole person so rather than just my symptoms singular, how they affect me socially, emotionally etc.
For now I need to work on pacing myself and I have permission for power naps during the day as I keep pushing myself to the point when I'm running on empty adrenaline and then I'm crashing.
So I now have permission from my Dr to have daytime naps and I need to remember my pacing.

🌟 Tuesday 16th July

I had my home physio this morning. I'm really glad I've swapped a) physio's and b) to having physio at home. My hospital physio was great but it's easier to be at home even though there isn't all the equipment they have at the hospital plus it's given a fresh perspective on my exercises and I now have a really awesome telescopic folder for my different exercises which I can pick and choose from. Gentle exercise for bad days, good day exercises, sitting exercises and some challenging standing exercise and now I have some arm/shoulder exercises alongside the challenges we've set.
I'm not having the best of days so it's just been a comfy clothes day.

📆 Wednesday 17th July

Had a fairly busy day. Had to get up earlier to give me time to get ready for my 12pm appt and then at 1.30pm my support worker from the autism team came to introduce herself.
I spent the rest of the afternoon/evening just recovering and trying to watch my way through 'Stranger Things' before my step-mum's Netflix finishes.
I also spent some time on my laptop sorting some blog posts out ahead of Self-Care Week. Yes, I blog months in advance, it's how I manage to blog with a chronic illness.

🐦 Thursday 18th July

Woke up annoyingly early due to extremely noisy cooing pigeons (though I wouldn't call it cooing, just annoying pigeon noise!). I kept trying to shoo them away but it was 🐦 pigeons 1 & 👩🏻 Naomi - 0.
It was an appointment free day so it was nice to chill out and I'm trying to remember to pace myself, but it's easier said than done when I get engrossed in activities. I did take a power nap as given permission to do by Dr Sally.

💇🏻 Friday 19th July

Busy busy day. The morning was spent getting myself ready. Then this afternoon me and my nurse went to see he local MP and it was a really positive meeting so fingers crossed.
Then went home my travel handbag was waiting for me. It's similar to the the new Samantha Bag I've recently saved up and treat myself to and it finds really well onto my wheelchair like my other bag so it's to have some more grown-up handbags on my wheelchair compared to my rucksack photos on Instagram and ?YouTube video to come.
I had a rest before my hairdresser came round to cut my hair. I normally just have the ends taken of but I had about 2 ½ inches off approximately and my fringe desperately needed cutting - I was starting to feel like Doogle [the dog from Magic Roundabout].
I then totally forgot about my ECG appointment and I rang up very apologetically (I lost could how many time I said sorry). It's totally not like me to forget appointments but I wa so exhausted and out of routine. I managed to get an appointment for Monday morning, I'm not the best in the mornings but it needs doing.
Instead of setting my alarm for 9am I've been setting it for 8am to try and give me extra waking up time in the morning so hopefully if I keep that up for Monday it will mean I'll be awake enough for my ECG appt and I've sent plenty of alarms to remind me.

⏰ Saturday 20th July

Chilled out day wearing my "pj's" as Dad calls them aka my comfy clothes.
Not done much but my memory has been terrible. I think 30 minutes has past and it's actually been several hours.
Need to get back into my studying next week. Today has just consisted of laptops, TV and naps.

💙 Sunday 21st July

Had a nice quiet morning. The carer that was meant to come was off sick so I had a new carer. Normally new carers shadow and have trying before solo visits but this was a last minute thing and it was just a case of what carer was available.

The carer that came was lovely and she could braid hair and she said that she really enjoyed the call and she'll ask in her next mentor session if she could do more calls with me which was nice and when I the on call supervisor called me able the change of carers we discussed putting more carers into my care team as some of my carers have been promoted to be supervisors and some have left and the last minute carer I liked too so hopefully she can come again, especially because she can braid hair!

The evening call was taken by the on call supervisor who I know well as she used to be one of my regular carers but my agency try to put me with carers that a) have the training but b) are also proud my age.

Unfortunately the evening call didn't quite go as planned. I had a prolonged seizure and my carer tried to leave it as long as possible as she knows how much I hate the paramedics being called out and having to go to hospital.

Initially and EMT crew came and one of them remembered me. This time he knew I had a care plan and was happy to follow it so rather than just taking me to A&E where they would do zilch he called for a paramedic crew to come who could give me the IV meds I needed as written on my care plan. So a second paramedic crew came and they gave me pain relief and diazepam. They were here a while trying to get me stable. My uncle was called and came but he couldn't stay with me as he had to be up early to go away for a meeting in Preston so as I would be home alone there was no option but to go to A&E.

The main issue with A&E with A&E is that the paramedics do about 95% of what needs to be done; all A&E do is monitor me. At least this time they did that, sort of, not regularly but every so often my obsession where taken. One of th paramedics packed a bag in case I was admitted to I had my iPad and headphones so I just dosed and listed to and audiobook. I was feeling sick from the pain and when the Dr came he asked how I few feeling and I said I was feeling better from the meds the paramedics gave me and he was happy for me to have some IV anti sickness as I can't have the ones the paramedics carry.

Normally I'd get patient transport home but they where so backed up I'd have to wait until the morning (well, it was morning early hours) but several hours morning wait so the nurse wanted me to get a taxi. Only difficulty was my lack of crutches or better my wheelchair. A nurse and HCA helped me into the taxi and thankfully a) I had my purse with enough cash in it and b) I had a lovely driver who helped me into the house.

It was then meds, food and bed as by this point it was around 4 am.

Video Description

Monday: Pressing the Netflix button on a remote control

Tuesday: Microwave one and the timer coming to an end with the light inside the microwave going off and the plate stopping spinning

Wednesday: Fast forwarding through a TV program and screen shots moving quickly past on the screen

Thursday: Closing my window; there is a key in the lock with a beaded keyring attached.

Friday: Pouring a sachet of coffee into my cup

Saturday: Bagels popping up in the toaster

Sunday: Video of my legs bend up in a darkened room with the door open and an Entonox inhaler mouthpiece on my stomach

Paramedics, A&E and Medication Mess-arounds

So one of the medications I'm prescribed for my seizures is liquid diazepam to take when I'm having a prolonged seizure episode. I'm also supposed to have buccal midazolam but that's a long story (basically there's a shortage and they're only giving it to palliative care patients). Having the diazepam has massively helped reduce my need for paramedics, but last time I put in a prescription request, well twice actually it got denied. To cut a long story short my GP is going to consult with Professor Edwards my neurologist about my seizure medication (I also take clonazepam three times away which also helps), but the diazepam is great for acute episodes.

Well, yesterday now, I had a prolonged seizure with my carer and it went on too long so she had to call for an ambulance as we had no diazepam to give to me.

(Surely giving me a prescription for diazepam would be a heck of a lot cheaper than 2 paramedic crews and a trip to A&E).

The first crew that arrived was a technician crew and they where familiar with me. They read Professor Edwards care guidelines and where happy to follow them and called for a paramedic crew as they can't do IV drugs.

Second crew arrived. I made it clear that I wanted to avoid hospital at all costs. The paramedics hung around for quite a while but when my Uncle came and said he had to travel away for work early tomorrow ad couldn't stay with me and because of the high dose they had to give me and I was home alone it untimely came down to the conclusion that I had no choice but to go to hospital.

The thing I get about A&E is that there's so very little they can actually do as the paramedics do 90% of the work. A&E just monitor me and top me up with any meds if needed and I'd managed to sort my dislocations/subluxations out myself so there was no need for x-ray scans. I literally just laid and listened to an audiobook with someone coming occasionally to do my obs. Thankfully this time I got a room eventually so I was able to be in a dark room. The Dr came and I said my pain was tolerable and back to my normal baseline thanks to the IV morphine the paramedics gave me; I was just feel sick due to the pain and I normally feel sick after a seizure so he wrote me up for some IV cyclizine. 

Normally I'd get patient transport home like I get t take me to/from my regular appointments but I'd be waiting until the morning as they were so backed up so a nurse and HCA booked me a taxi and helped me in. I had no wheelchair or crutches but the taxi driver was lovely and gave me a hand to the door.

The paramedic/EMT's and A&E staff where lovely enough given the pressure they're always under and my A&E stay wasn't a bad experience compared to other times I've been in A&E.

Thankfully I'm home now, exhausted and frustrated. I know my carers have a duty of care and my Uncle Mark had work, I just wish I could live a "normal" drama, hospital free life.

Luckily I'm seeing Professor Edwards on Tuesday.

Just hope I'll be okay to go and have my ECG at 10.40am.

For now, bed. 

Meeting with the local MP

Yesterday myself and my nurse from my care agency met with our local MP. I wasn't sure what to expect as a) I'd never met with and MP before and b) I felt there wasn't much else that could be done and that I exhausted all options.

Melanie Onn was lovely, she was very understanding and I felt that she really listened to me. I explained to her about some of my concerns, e.g. being alone during the day having multiple seizures and other aspects of my illnesses and symptoms e.g. POTS episodes, dislocations/subluxations, falls, incontinence etc. I also spoke to her about the lack of communication between my care in London and my GP/local care. I expressed that I wanted to live on my own with a care package of support. Melanie was really onboard with how I should be able to live a "normal" 26 year old life and that I should be allowed to use care funding for fun things as well as that actual care side of things and be able to live independently and safely. My nurse and I also shared how difficult I find it to manage my health and then on top of that I have all the appointments and emailing and telephoning act.

We also spoke about the extra costs: home care, taxi's, extra money for food and heating (the heating element I don't get an extra allowance during the winter like all older people get [whether they need it or not, but hays a frustration or another day]), any aids I need that the NHS don't provide etc. Literally at the end of the 4 weeks I have next to noting lift of my PIP and I pay for as much home care as I can but it's still no way near enough and there's no way I can move into an adapted property of my own and pay privately for the home care I'd need.

Also I explained about Leeds and how the CCG was only holding the funding for  months which I'm concerned about. One of the things Melanine is going to contact to CCG try and do is extend that.

My memory is terrible; I can't remember to outcome exactly but I think Melanie is going to investigate into some things like what am I no longer in the catchment area for the Complex Care Team, contact the CCG, my GP practice, mental health team and adult social care.

Hopefully they will send me an email or letter with a summary of what we discussed and something positive will come the meeting.

It was really good to have my nurse there for support with me as she's helped me a lot and attended a lot of meeting with me, or on my behalf and done a lot of advocating and chasing up for me.

What is a Changing Places // Changing Places Awareness Day 2019

Example of a Changing Places facility

About Changing Places

The Changing Places campaign officially started in July 2006. In celebration of this the Changing Places Consortium decided to make the 19th of July an annual awareness day for the campaign and for raising awareness of Changing Places - educating people what they are any why they are essential for so many disabled children and adults in the UK, but also worldwide. Changing Places Day is also about celebrating the Changing Places campaign and what it has done over the years.

"Many people don’t give visiting public buildings a second thought. But some disabled people are unable to takepart in activities many take for granted because standard accessible toilets do not meet their needs – or the needs of their carers and families.Imagine having to change your loved one or someone you care for on a public toilet oor. This just isn’t acceptable. But it’s a reality many have to face daily because they have no choice." - Changing Places, Changing Lives

What are Changing Places?

Changing Places have addition facilities to meet an individual's needs including facilities that could include: 

• A bigger room to allow several carers into the room alongside wheelchairs and equipment
• Centrally placed toilet with space either side for carer or for easier transferring
• Plenty of grab rails
• A hoist (either a portable hoist or a track ceiling hoist), privacy screens, a height adjustable adult size changing bench
• Wide tear-off paper roll to cover the bench
• A height adjustable sink
• A shower
• Large clinical waste bins
• Emergency red cords
• A non-slip floor
• A safe and clean environment

Who benefits from Changing Places?

Standard accessible toilets are fine for some disabled people, but not all.

Changing Places are essential facilities for over 240,000 children and adults in the UK. This may include people muscle-wasting conditions, motor-neurone disease, neurological disorders, spinal cord injuries, multiple sclerosis, severe learning disabilities, cerebral palsy, acquired brain injuries, spina bifida, strokes and other physical disabilities.

Why are Changing Places so important?

Knowing there is a Ching Place facility makes it easier for people and their carers and family to plan leaving the house, whether this is to attend a hospital appointment, run errands or have a fund day out.

"Standard accessible toilets (or "disabled toilets") do not provide changing benches or hoists and most are too small to accommodate more than one person. Without Changing Places toilets, the person with disabilities is put at risk, and families are forced to risk their own health and safety by changing their loved one on a toilet floor. This is dangerous, unhygienic and undignified." - Changing Places

Why we need more Changing Places

In the UK there is a growing need for more Changing Places and there are simply not enough and often it's a postcode lottery as to where you live as to how many there are in your local area.

The Changing Places campaign has and is being very successful in getting more Changing Places facilities installed across the country. It is still not mandatory for Changing Places to be installed in public buildings and spaces, but the Changing Places campaign is working on this to make it a mandatory requirement under Building Regulation for all public spaces - shopping centres, leisure venues, hospitals, transport hubs like bus and train stations, motorway serves and airports.

How can I find out where my nearest Changing Place is located?

On the Changing Places website there is a map of all the nearby Changing Places to where you are. 

You can also plan a route and it will show you where all the Changing Places are located along you route.

⇨ UK Toilet Map

You can also find Mobile Changing Places which can be hired for events.

Also, if you come across a Changing Place which is not on the map you can inform the Changing Places campaign so they can upload it to the map.

The map also gives details of some locations as to what facilities that particular Changing Place has.

References:

• Changing Places website
• Changing Places, Changing Lives
• Changing Places Toilets: Estimates of potential users

GUEST POST by Taylor // Strokes don't just happen to older people

A self of me with a
paralysed hand

I wake up, and I mourn my health. I go to bed at night, and I mourn my health. It’s debilitating, frustrating, and I have no choice. 

My name is Taylor. On October the 31st, 2005, at 12 years old, I suffered from a right cerebral ischemic stroke or an MCA (Middle Cerebral Artery) CVA (Cerebrovascular accident).

This subsequently resulted in a severe Acquired Brain Injury (ABI) which left me permanently disabled. I suffered from left sided hemiplegia, spasticity, dystonia, along with cognitive and emotional deficits. Many things have improved, many have not. Due to the severity and the type of stroke I endured and my age being a huge factor, I wasn’t eligible for surgery or immediate intervention being so young. Over a decade of therapy, neuroplasticity, and medication that only had temporary relief and serious side effects, extreme fatigue and constant plateaus, I had to learn to accept the fact I wasn’t going to make a full recovery.

My ABI was caused by a genetic MTHFR (methylenetetrahydrofolate reductase) gene mutation that I am a compound heterozygote for (don’t worry, i’m still trying to figure out what that means). The hospital took months to figure out why it happened and only after a specialised fMRI they had the answer. So no, strokes don’t just happen to older people. 

I like to think that a strength of mine is sharing my vulnerability in order to allow myself and others to heal. The most tiring thing for me about having a disability, and the most difficult thing about suffering from internalised ableism, is that my mind doesn’t match up with my body. My cognitive functioning does not match up with my reality, and because I have been bought up in a world that tells me I am useless without achieving societal norms, it means I believe I am worth nothing but a burden on everybody around me. How do I change this faulty thinking? How do I accept that I don’t need to be “fixed”? I take back my power from those that destroyed it in the first place. 

I was thirteen and attending my high school again a few times a week after I left the hospital and my intensive physiotherapy, speech therapy and occupational therapy regime. I was attending outpatient rehab services for ongoing therapy. I was utilising a wheelchair and had countless mobility aids, often arm and leg splints. I had a falling out with my childhood friends, I was a precocious child and having a life altering experience emphasised that tenfold, so attending school was isolating and painful.  

Dystonia
in my hand

I was a fragile, newly disabled thirteen-year-old who was different, and because of that indifference I suffered at the hands of significant peer abuse. I felt the way people made me feel, empty. Worthless. Marginalised. Scared. I would attend school three days a week, wheelchair bound where I would be taunted by neurotypicals, sprawling their disabled jokes all over me, soaking me in shame. Throughout the years I was pushed down stairs, had rocks thrown at me, called countless disabled slurs and even had my own “friends” turn against me to merely fit in with their peers. I was ridiculed. I was shattered by the words of those who could never understand the degree of my pain.  

I won’t go into detail, but the next decade following from what i understood was “mere bullying” (my C-PTSD, year’s of therapy and substance abuse tells me otherwise), my mental health took a rapid decline. I was a young disabled person who had serious physical limitations, therapies that just weren’t working, infinite frustration and on top worsening mental health. I started to believe i was merely every slur that came out of the mouths of those who only said the abuse to deal with their own pain. So I took that hurt, and made countless attempts at ending my own life. I guess I’m living proof that bullying can kill you? 

Present day and I’m over a year sober and clean now from my substance abuse and overdosing history. I am medicated for physical pain and mental health issues that will remain for the rest of my life. I have seizures, fibromyalgia, very possible CFS/ME, GI issues, just to list the ones i remember, on top of my mental health and ABI. I have worked on self love and continuing on my journey of healing.

Disabled folk shouldn’t be commended for living in a society that tells us we are worthless, but celebrated and made inclusive instead. Celebrated because the physical pain doesn’t subside, the emotional pain from ableists soaking us in shame never really fades, but we do our best to educate, advocate and protest for our existences to mean something regardless. For us to be heard. Over and over again. How bloody courageous is that? We shouldn’t have to do this and we didn’t ask for ableism to exist yet we continue on doing the work. I want people to understand that just because someone isn’t a reflection of themselves; does not mean they are unworthy. That indifference is nothing to be feared or dismissed. 

Thank you for letting me share.

Taylor 

One Second Every Day - July: Week 2 // 2019

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.

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

• Disability Nottinghamshire: The Social Model vs The Medical Model of Disability
• Mental Health Foundation: Social Model of Disability
• Scope: The Social Model of Disability
• The Alliance for Inclusive Education: The Medical Model of Disability
• The Alliance for Inclusive Education: The Social Model of Disability

One Second Every Day: July - Week 1 // 2019

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.