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?

Sunday 23 June 2019

One Second Every Day - June: Week 3

Monday 17th June

It's my birthday! 26 today. It brings mixed feelings as you want to be happy because it's a happy day, but equally it's difficult as it's another year gone by which has been dominated by chronic illness and disability and another year where I've felt stuck struggling to access services to give me more independence, another year where I've not been able to work/volunteer or study etc.
Once I was awake I sat in bed and opened my parents from my pen friends. 
I had my favourite carer 11am-1pm and it was nice to see her.
Then my friend popped round for a cuppa and a chat. 
I was exhausted but I had to get ready for my taxi picking me up to take me to my appointment.
I had an appointment with the Adult Autism Service and I've been officially diagnosed with Autism, but I was kind of expecting it but it does feel positive and hopefully I can transfer my support to them but they're going to have a meeting to discuss my case and for a plan of action but I have asked to be assigned a key worker.
Home and exhausted! I chilled out for a bit then Dad, my step-mum and I sat and I opened my presents from them. I have enough crochet kit to keep me going until I'm 27! 
We had tea and then my step-mum got out a Naomi friendly birthday cake which was lovely.
In the evening we played a few rounds of Scattergories.
My brother also left an amusing message for me on Dad's WhatsApp.

Tuesday 18th June

Woke feeling awful; not helped by forgetting to take my night meds (again!) I was in so much pain I knew I needed pain relief right away - normally I try alternatives first. My back felt like on big concrete muscle. Meds didn't full helped so I had to take something a bit stronger. I had an accidental sleep on the sofa, probably because I didn't sleep well due to the pain.
I was contemplating cancelling physio but I gave myself a time scale and at 12pm I got dressed and the stronger pain meds helped.
It was my first time having home physio and it went really well. She was understanding that I was having a bad pain day and we mostly talked and set some goals. It was a lot easier having physio at home; if I'd had to go to the hospital today I would have had to have cancelled which would have messed up transport etc up.
When the physio left I had a lay down and then I had Bluebird.
I was a little miffed as I wasn't informed of the change of time to the call and change of carer and the fact that I had a carer shadowing. I did email the office explaining that I would like to be informed of any changes and it can be quite unsettling for me especially because of my Autism.
Since Bluebird left I've just been laid feeling a bit zonked on the sofa watching TV and drinking tea.

Wednesday 19th June

Had an appointment at 12pm. 
Been struggling emotionally today. Bit of a boring afternoon. Called my care co and had a mess around with the GP over one of my medications. If my tray comes Friday without that medication I'll just get my advocate to sort it as it should be my doctor's job; not mine.

Thursday 20th June

Had Bluebird. I wasn't informed of the changes which is happening a bit lately, but still, I had one carer who I know and like and I get on with and a new carer who's showing who braided my hair for me.
I had a few absence seizures such my muscles spasms and speech difficulties flared up.
As my carers came later than what was written on my rota I had to call Orchard Barn to say I was on my way but in the call my speech was still playing up so I asked them to be patient; it was because I had a seizure earlier. Because of that the lady who does my massage wasn't happy to go my massage even though I'd only had a few absence seizures which was disappointing as I find having massage so helpful for my pain. I still had my appointment with Dr Sally. 
I got home and was feeling pretty exhausted and brain fogged. I did try to look for plant pots but my brain has been filled with treacle so I gave up. I've spent the evening just watching TV, though I've got an Etsy order to put together so I'm just doing that now before I fall asleep.

Friday 21st June

Was up early, again! Need to sort my sleep out seriously!
Had a colouring, TV watching, napping on he sofa jeans and a cosy cardi kinda day. Also been saving ideas for blog posts so behind the scenes my blog looks a chaotic mess.
Evening I had quite a long seizure and I came of the chair with a bang. Thankfully my glasses survived. 
Feeling sore and tired now so going to get to bed.

Saturday 22nd June

Mundane day with not too much to it. Since my seizure yesterday I've had a sore head and a worse-than-usual headache, nausea and dizziness. I'm also still full of cold.
I managed to have a little bath and I put some make-up on to make myself feel brighter.

Sunday 23rd June

Managed to go to church today. Rather than go to City Church I've been wanting to go to the church Dad and my step-mum go to as if I become unwell there they are there to look after me.
After church we went to B&Q and I got a pot for one of my plants, a plant for my zebra pot and a mini orchid for the bathroom.

Video Description:

  • Monday: Blowing out a candle on a cake
  • Tuesday: Pressing a button on the TV remote
  • Wednesday: Photograph of my laptop and the letter I'm typing a reply to
  • Thursday: Photograph of a fishtail braid in my hair
  • Friday: Fastening a button on my cardigan
  • Saturday: Popping out a tablet
  • Sunday: Video of the bottom of my tumbler and me drinking up the last mouthful

Friday 21 June 2019

Chronic illness and loneliness

It's coming to the end of loneliness awareness week and I wasn't quite sure what to write other than 'being chronically ill is very lonely' because it just is.
"Over 9 million adults are often or always lonely." - Sense
"Almost half of working-age disabled people are chronically lonely... that works out at about 3 million lonely disabled people in Britain.""On a typical day, one in eight disabled people have less than a half-hour’s interaction with other people." - The Guardian
Doing my research for this article it seemed that a huge barrier to disabled people combatting their loneliness was the lack of accessibility in society. Such as wheelchair users turning down going out he the pub, or to a restaurant or going on public transport with friends because of lack of access.

The a lot of the time I am house/sofa-bound, I see the same few walls and windows week-in; week-out. Though I try to get out when I'm well enough with a friend, family member or carer. I don't live alone (though I'd like to but that's a whole saga in itself) but we don't often sit down and spend time together in the same room except to eat tea (evening meal if you're not for up north). I see my carers a couple of times a week and I see care professionals such as my nurse and physio. But the vast majority of the time I'm on my own.

I've struggled a lot with clinical depression since I was 11 and been isolated and lonely as well as dealing with being chronically ill doesn't help.

I have one friend who I see in person every-so-often but my biggest defence against loneliness is mail - both writing and receiving. This give me that "social" interaction that I can't do in person. I have pen pals; some whom I've become good friends with and some of my pen pals also have health problems too so there's that shared understanding, but it's nice to talk about non-medical stuff too as we spend our days dealing with symptoms and appointments etc so its nice to talk about other things like what we've been watching TV or our latest craft project.

I'd defiantly recommend getting into letter writing as a way of combatting loneliness.

Sunday 16 June 2019

One Second Every Day - June: Week 2

Monday 10th June

Had Bluebird as usual. 
Post arrived. I had 3 parcel redelivers. One was my Superdrug order. Another was my zebra plant pot.
The last parcel was from 'Shine Bright Bundles' which is a parcel of lovely things. It's an organisation that sends out packages to people having a though time with their health.
I then set several alarms to remind me of my appointment this afternoon. I was suppose to meet my advocate at 3pm and my appointment at 4pm. It was a different advocate stepping in for my usual advocate; last time that happened I didn't;t really feel supported and this happened again so I'm going to let my usual advocate know. The advocate I was meeting at 3pm was late and then my care co-ordinator and consultant wanted to meet earlier than 4pm as they wanted to get off home (!) so they gave me 5 minutes for my advocate to show up and then I feel pressured into going into the assessment without support and I didn't;t have the time to debrief with the advocate so she could support me.
I didn't really feel like I was listened to in my assessment but I did get some PRN meds. I rarely use them but at least I know I have them should I get to crisis point. I didn't get my day time PRN even though last time I had them I was on my seizure meds like I am now, but one of my meds the dose is going to be increased so I'll have some in the morning which should help me through the day. I just need to wait for my GP to action that dose increase.
The journey home was exhausting as I had to go the the pharmacy first. But once I was home I just took rested and had an early night and took some of my PRN.

Tuesday 11th June

Had the best nights sleep that I've had in a long time. Physically feeling drained and my POTS has been quite bad so I just stayed put on the sofa until my carer came.
I had a wash, got dressed and had something to eat.
I'm stressing a bit about college work but I'm just trying to tell myself ht I need to put my health, physical and emotional, first andI'm telling myself that I can always get an extension.
I've mostly watched TV today due to brain fog but late afternoon I've done a little bit of blog sorting. I also managed to call the council about the ver distinct lack of dropped curbs down our road which makes it very difficult and dangerous, especially as at times we have to travel on the road and there's blind corners, residents not using their driveways so we're literally having to go in the middle of the road and people don't exactly drive slowly.

Wednesday 12th June

My new handbag arrived in the post today and I'm loving it. I'll have to ry and do a video to show it off on my YouTube channel. What's great about it too is that I've bought some straps which create some loops to got around my wheelchair handles. I have usually handbag stuff and then medical stuff for my handbag and Ive been struggling to find a bag that big enough. Plus this is like a nice grown-up handbag.
Had an appointment at 12pm. Didn't really do much for the rest of the day. 

Thursday 13th June

Woke up feeling awful; not helped by forgetting to take my night meds.
I had a seizure whilst making my breakfast.
I was planning on going out with Bluebird to sort my bus pass out and pick a few bits up from Tesco but I just knew that's be pushing it and I don't fancy a repeat of the last time I had a seizure in Tesco. So instead I stayed in an had a nice shower and I felt a bit better.
I decided to aim for a big win and nip in the car with my carer to the Co-op and get some cash out as that really needed doing. Mandy's going to pick up some whisky for Dad for me that I'm getting him for Father's Day as that one thing I was going to do in Tesco.
When my carer left I got something to eat as I didn't;t have breakfast as I was feeling too sick even to have a frozen Fortisip lolly (I freeze my nutritional supplement drinks into lollies as I can keep them down better that way).
The rest of the day was doing not much but resting.

Friday 14th June

Woke up around 5.30am in pain. This keeps happening so I'm going to mention it to my GP. I was too uncomfortable to get back off to sleep so I watched something on my laptop. I managed to get back to sleep for a little while but then decided I should just get up and start the day early (well, early for me).
I washed my face and did my makeup and used some of my new makeup bits and Ive been experimenting with eyeshadow looks - I keep meaning to look on YouTube and Pinterest as at the moment I'm just making my makeup up myself.
It felt good to have a bit of makeup on even though I'm not seeing anyone or going anywhere.
I got some lovely post today including some birthday gifts for Monday and I got some post crossing mail and the sender put in a lovely letter to me.
I haven't watched my TV today which has felt good as it does get a bit mundane and boring.
It's been slow going as my POTS hasn't been great today for Dad for Father's Day using a piece of wrapping paper I made a co-ordinating gift tag on the bottle bag, a card, and I decorated a paper bag.

Saturday 15th June

Struggled to wake up this morning but I've been sleeping better at night.
Today's been a sofa day which has felt a bit boring. I've just a had background TV shows on and done some colouring. I've coloured in some postcards and some pages that have quotes on the back which are nice to put into letters.
I'm now feeling quite tired so I'm going for a rest.
This evening I've had a bath; since having my bath lift it's made things a lots easier as I don't need to struggle transferring up and down.
Emotionally i've been struggling so I ended up taking some PRN just to help clam me down and I put on an audiobook and eventually nodded off.

Sunday 16th June

Struggled to wake up again. I was too comfy in bed and probably tired from struggling to get off to sleep until I took my PRN.
I had a slow morning and then around midday I got dressed - I considered putting makeup on but thought there wasn't much point.
Dad's been busy writing school reports but he made some time to spend with me and I gave him his Father's Day presents (ginger ale and some English spiced rum) and we played a couple of round of Rumikub.
I've just finished ensuring my appointments are in my calendar and I've emailed UCLH to ask when my upcoming appointments for gastro and urology are as I don't want a repeat of the other week when we got all the was to the hospital and found my appt had been cancelled!
My plan now is to watch one last TV programme then head to bed. Hopefully bedtime will go better tonight.

Video description

  • Monday: having my hair blowdried by my carer
  • Tuesday: illustration of someone laid flat on the flow with the word 'nope'
  • Wednesday: unzipping a mustard yellow handbag
  • Thursday: operating the remote to my bed
  • Friday: opening a cardboard box parcel
  • Saturday: colouring in using a green felt tip pen
  • Sunday: Popping open a clip lid kilner jar

Saturday 15 June 2019

GUEST POST by Jonathan for Carer's Week 2019

Illustration of a caucasian man and woman. The woman's short brown hair and is wearing teal coloured clothes she is sat in a purple wheelchair behind her is a man with a white t-shirt and brown hair.
5 Important tips I’ve learned from being a Carer

Hi, my name is Jonathan and I’m a husband and carer for my wife who has multiple chronic health conditions.

I was asked to write a blog post for Carers Week, which I’ve never really done before so I wasn’t sure what to write about. However, after thinking about it I decided to write about some tips I’ve learned since becoming a carer that have helped me with my responsibilities and that I hope in some way will be of help to other carers too.

Don’t get confused between being a carer and being you.

This is probably the first big dilemma I had when I started taking care of my wife full-time. When I transitioned from work to caring I struggled to understand who I was because I took on my role as a carer like it was a job, which unfortunately is entirely the wrong way to view it! However, I now understand caring to be helping out a loved one and not a job. I am myself first, husband second and a carer afterwards. Being a carer shouldn’t change who you are or define you as person. If you can view caring in this way then it will actually help you keep balanced in life and be a better carer as a result.

Don’t be afraid to accept support.

When I first started taking care of my wife full time I mistakenly thought I could do everything on my own and didn’t need any help. But my wife thought otherwise and could see that I was eventually getting stressed and struggling and so she decided to get some carers in to help us. I was skeptical at first but soon realised that the help was very useful and it allowed me some much needed breathing space. Now I don’t know what we’d do without the help we get as it means my wife is cared for during part of the day so that I can do other things that I need to do or spend some time for myself, enjoying hobbies, going to the gym or just taking time out to relax. It can be hard to admit that you need support but in my experience you should never be afraid to ask or accept help when you need it.

You have to be organised.

I must admit that I’ve never been the most organised person but if becoming a carer has taught me anything it’s how to be more organised. When you’re caring for someone who depends on you to help them organise appointments, sort medication, provide personal care, manage finances and other things on top of looking after a house then life can get very busy. Suffice to say it took me a while to get myself more organised and into a better routine but now I find life much easier to cope with because I know what is going on and I’m more in control, which then helps me to care for my wife better.

You need to make time for yourself and take breaks.

Now I know that this is easier said than done for a lot of carers as their time is almost always taken up with caring and other related activities. However, making time to care for yourself is important as it will make your relationships stronger and healthier and make sure that you don’t burn out. Finding time for yourself to do things you enjoy though doesn’t mean you love the person you care for any less, it means recognising that you are human and need to take breaks too, it also means that you will have new and interesting things to talk about with the person you care for and others that isn’t just related to care work. Personally, I was only able to take a break from caring when we started having carers come in to care for my wife during the day. It allowed me some time each day to go off and do something for myself, even if it was just to go to a local coffee shop and read a book. Taking a break might be difficult in your circumstances but it is important for your own wellbeing and also that of the person you care for that you find to take a break and refresh so that you can continue caring and not burn yourself out.

Don’t isolate yourself.

Loneliness is a big problem for many carers. In fact, a recent study by Carers UK suggests that carers are 7 times more likely to be lonelier than the general public. It’s a sobering statistic but not really that surprising, especially since I’ve experienced times where I have felt lonely and depressed. It’s so easy when you are wrapped up with caring to feel lonely. Before caring you may have had a social life and spent a lot of time with friends and family, but now unfortunately you’re not able to spend as much time doing those things and your social life can become almost nonexistent. Personally I also found that I wasn’t able to rely on friends and family as much for support because I was worried that they wouldn’t understand my new circumstances, which made me feel even more isolated. 

However it’s not all doom and gloom as there are ways to make sure you don’t get isolated. I found being able to talk to other carers a good start as being able to open up and share with someone who knows what I might be going through is a great way of relieving any pressure and stress that I might have. Also making time for myself to go out and interact with other people, perhaps asking to meet up with a friend for a coffee and have a chat or go and play a sport occasionally with a group of friends really beneficial. It doesn’t have to be lots of activities but just enough to make you feel a part of a social group again.

If you are also a carer then I hope these tips have been of some help to you and have perhaps inspired you to seek the help and support that you need. I also hope that this post will have helped others learn more about what it’s like to be a carer and the challenges it brings. If you’d like to find out more about caring then please check out the charity Carers UK who support all carers in the uk with advice on various topics related to caring and campaign for carers rights.

Kind Regards 

Wednesday 12 June 2019

The CEA Card - What is it? Reasonable adjustments and Accessible Screenings UK

What is a CEA Card?

The CEA Card is a national scheme developed by the UK Cinema Association.

Having a CEA card enables disabled people going into participating cinemas to have someone to come into the cinema with them for free. This is part of making reasonable adjustments for disabled people under the Equality Act. This person could be anyone, a carer, friend or family member and it means that should the individual need help or support they have someone there to assist them.

The CEA Card scheme is also one way for cinemas to ensure that disabled people are looked after. Though by law all cinemas should carter for the needs of disabled people.

Around 90% of UK cinemas accept CEA Cards. On the CEA Card website there's a search tool to find your nearest participating cinema.

You can also in some cinemas use your CEA card to get a concessions ticket.

Reasonable Adjustments

If you require  an adjustment when you visit the cinema because of your disability staff should ensure that reasonable adjustments are made whether the individual has a CEA Card or not. 

This may include having autism friendly screening times, having subtitled films, proving audio description, wheelchair access, accessible toilets/Changing Places etc.

Providing reasonable adjustments for disabled people is mandatory by law to all cinemas, not just those that are part of the CEA Card scheme.


To be eligible for a CEA Card you must be over the age of 8 years old and be in receipt of one of the following: 
  • Disability Living Allowance
  • Personal Independence Payments
  • Attendance Allowance
  • Armed Forced Independence Payments
  • Severely Sight Impaired Registration (formerly Registered Blind)
  • Sight Impaired Registration (formerly Partially Sighted)
When you apply you must upload a copy of your entitlement letter of those with Severely Sight Impaired or Sight Impaired applicants you need to upload a photocopy of your registration.

Apply for a CEA Card 

The form is really simple, just just have to fill in some personal details, upload your eligibility information an attach a passport sized picture of yourself.

The card currently costs £6* and is valid for one year and you can use it as much or as little as you wish.

To apply or renew your CEA Card click ⇨ here.

Accessible Screenings UK

Accessible Screening UK is a search tool to find accessible screenings of films in the UK. 

You can search for subtitled films, films with audio description and Autism Friendly Screenings.

*date correct June 2019

Sunday 9 June 2019

One Second Every Day - June: Week 1

🐢 Saturday 1st June

Had a nice afternoon with my friend. We haven't seen each other for a while as both of us haven't been well. She brought with her some face masks and we put them one and drank tea and had a good catch up. She's the only "real person" friend I have.

🐵 Sunday 2nd June

Not much of an exciting day. Just a usual day, struggling to wake-up and get out of bed; I was able to lounge in my pj's as I had the house to myself and i just laid on the sofa and watched TV.
I put in a Superdrug order for supplies for another pamper session with my friend as she's having an operation next week so she'll be out of action for 6 weeks so when she's feeling better we're going to have another pamper afternoon.

🐸 Monday 3rd June

Not an interesting day. Had my call with Bluebird and then I just rested for the rest of the day and finished of the last part of Section 2 of my college course and submitted that as the deadline is on the 6th.
I have an app to keep my finances in check and it was all going great and then the number went all wrong and I asked my stepmum to help me (as she good with that sort of stuff) and then I just decided to have a clean break and start from scratch (as it was getting all a bit too confusing) but it does mean that my bank account and app out out of sync but I couldn't sync it as both my ESA and PIP (disability allowances) both go into the same account but I like to separate the two so I know what I'm spending on daily living things and what I'm spending on disability things so it's a bit frustrating but at least I know I have some fall back in my bank account. I still like the app and would recommend it; it's called 'Pocket Expense'.

🐳 Tuesday 4th June

Woke up early this morning in pain so I decided to do some letter writing on my laptop to distract myself. I'm almost done with working my way through the stack of replies I had. I've now just got one friend to rely to.
I had a day of extended pj wearing and didn't get dressed until around 1pm. I put on some make up just to brighten myself up.
I had my ½ hour call with Bluebird and my carer braided my hair and then we took a trip to the Post Office.
I've just spent the rest of the day resting as I'm at UCLH tomorrow. Thankfully its not a stupid o'clock pick up time.
This evening I'm just planning on having a bath, getting my bag ready, ensuring things are on charge and having an early night.

🐙 Wednesday 5th June

What a day! (writing this Thursday). Thankfully it wasn't an stupid o'clock early start. Patient transport arrived around 8.30pm. Bit of a panic as they was early and I wasn't quite ready, thankfully I wasn't in the middle of doing my makeup! I did forget my phone so we had to head back but luckily we'd only just got into the village when I realised and we wasn't on the motorway.
We had our usual pitstop at Peterborough services of the loo and a coffee. I watched a Panorama documentary but i was struggling to concentrate and I did some Instagram browsing and starting listening to a new audiobook.
When we got into London I like looking out the window.
Parked up at UCLH and I'm starting to know my way around there now. We found radiology easily. When we got to the desk and I handed them my appointment letter I got told my appointment had be canceled! Seriously?! I was not impressed, especially as a) we'd travelled or 5 ½ hrs and b) I'd received a text reminder. I asked if someone else could do the tests, or even if one of the tests could go ahead so the receptionist went off for a while and came back and it was a no-go. 
Quick nip to the loo and then I wanted to head to the PALS office but when we got there it was closed on Wednesdays. We then went the café/restaurant and had something to eat and just a rest from being in the ambulance.
After a while the fire alarm went off (and it wasn't a drill) the noise, flashing alarms and lots of people exiting starting flaring up my seizures so we scooted back to the ambulance and got ready to set off.
I had flaring migraine and my pain was flaring so I took some pain relief and settled down with my eyes closed listening to my audiobook.
Had another stop at Peterborough services for the loo and I fancied a sandwich but I was doubtful that I'd find one, but I did! We went to M&S and had a look and rather than going on a hunt for a non-existent sandwich we asked a member of staff and hey presto they did gluten free sandwiches and they had a veggie option (egg mayo and watercress) and it was lovely. I didn't feel like a coffee, and I like the fruit coolers in Costa but I didn't fancy a cold drink (plus Watchdog did an article on the 'swab mob' on ice in cafés and it's kinda made me a bit wary).
Home finally and into pj's and I took some more pain relief, anti-sickness and migraine meds. I settled down and watched some TV for a bit then headed to bed.

🐥 Thursday 6th June

Woke up early in pain. This seems to be a reoccurring problem at the moment. I then struggled to get out of bed.
I had Bluebird as usual then I just laid and watched TV and I wiped out from yesterday. My friend popped round for a quick chat and cuppa.
I'm not just sat watching TV. I hope to start on Part C of my distance learning course this evening before I settle down.

🐹 Friday 7th June

Had an appointment at Orchard Barn today. I had my last session of acupuncture and I also treated myself to a 'Nourishing Hand Treatment' and I had my nails shaped and cuticles done, I also had my hands soaked in warm oil and had an exfoliating scrub and hand massage as well as a foot massage. It was much needed! I've felt so on edge lately it was nice to chill out and have a pamper and to have something different too, plus it's helped with the muscle spasms and tension in my hands.
The rest of the day has been zonked out either on the sofa or in my bedroom.

🐴 Saturday 8th June

Had the usual woken up early with pain, this time neuropathic pain which my foot feeling like it was on fire. Normally cold just makes things worse but when I'm having this particular symptom an ice pack is the only thing that helps, esp if it can mean I can avoid taking medication.
As usual I spent he day 'sofa-bound'. I got some college work done, watched some TV, blog/laptop stuff and of course resting and napping.
Feeling snuffly and flu-like.

🐠 Sunday 9th June

Struggled to get out of bed today. It took longer than usual; about an hour and a half.
Still feeling snuffly and flu-like and I've got a headache so I'm just trying to drink extra fluids and just curling up on the sofa. I've done some laptop stuff but my brain feeling like it's going in slow motion and it's full of treacle.
Spent as usual the afternoon 'sofa-bound'.
Had an autonomic seizure after tea; a mixture of POTS and FND.
Still feeling post-ictal and I've been trying to organise my medical diary as I've not been keeping it updated and instead I've just been making notes on my health app. I'm too tired tonight but next week I can start bringing my warrior beads up-to-date.

Video description:

  • Monday: putting a slice of cucumber onto my sandwich
  • Tuesday: water filling the bath and squirting in bubble bath
  • Wednesday: view out the window of houses and the street passing by
  • Thursday: my step-mum spraying the window with the hose pipe
  • Friday: highlighting a line of text in yellow
  • Saturday: time-lapse video of my kettle filling up my cup
  • Sunday: Sliding open Sunday's tablet box

Monday 3 June 2019

Accessibility Guides - Planning a trip out?

If you have a disability or chronic illness like myself I've sure your care of how difficult planning trips out can be. You can't just turn up at places; instead you have to do your research and often call up the place your visit to ask your accessibility needs and what accommodations their are for your needs. Things like 'is there a Changing Place?', 'do you have info in audio or large print?', 'is there a hearing loop?', 'is there an audio announcement?', 'are their lifts or ramps?', 'do you have wheelchair or mobility scooters to hire?' this list goes on and on!

What's so difficult for organisations is that access needs are so varied including people who have mobility needs, are D/deaf or hard of hearing, visually impaired etc and within that each person's access needs are unique to them so it's difficult for organisations to cover all accessibility needs so often they only give a brief overview.

Thankfully there are some really good organisations that offer accessibility information. It's a bit like Trip Advisor, except for people with disabilities and access needs.

Euan's Guide

"Euan's Guide makes it easier for disabled people to find great places to go. 
The charity was founded in 2013 by Euan MacDonald MBE (who has Motor Nerone Disease) and his sister Kiki. 
As Euan’s access requirements changed, both went in search of recommendations for accessible places to go, but a platform for this kind of information didn’t exist. 
Built as a friendly and honest alternative to hours of web searching and phone calls before visiting somewhere new, Euan’s Guide now has thousands of disabled access reviews and listings for places all over the UK and beyond. 
Euan's Guide was launched by Euan and his sister Kiki as a place for disabled people and their family and friends to share their knowledge of accessible places to go."

I myself use Euan's Guide and write and submit reviews of places for them on the occasions I do go out. IWhen you write a review it asks what you're access needs are e.g. wheelchair user, mobility aids, speech impairment, assistance dog, hearing aid/cochlear implant etc. You then give an overall description, and then you write a review of transport & parking, access (e.g. was their a ramp/lift, hearing loop system, places to sit etc), toilet facilities, staff, anything else and you can also attach pictures, such as the seating area, the accessible loo/Changing place, accessible changing room, outside/inside access, Blue Bade parking etc.
Red Cord Card
As well as access reviews Euan's Guide also has a Red Cord campaign. 

They give out free #RedCordCards which say: "This red emergency cord must hang freely all the way to the floor. If it does not, it may prevent a disabled person from asking for help". 

Taking action in Matalan
The Red Cord Card scheme aims to bring awareness that emergency red cords in accessible toilets, accessible changing rooms, accessible fitting rooms and Changing Places need to hang freely. I carry around a few in my bag and leave them on emergency red cords and when I see one that been tied up I, if possible untie it and inform staff and also take a picture of the tied up cord and tweet it. This seems to rather effective. I recently got Matalan to sort out their emergency red cord in the accessible changing room.

If you live in the UK can order a free pack of Red Cord Cards from Euan's Guide ⇨ here

You can follow Euan's Guide on Twitter ⇨ here and tweet pictures of emergency red cords and cars with the hashtag #RedCordCard and #LetItDangle (see Gem's video below ⇩)


"AccessAble is here to take the chance out of going out. To give you the accessibility information you need to work out if a place is going to be accessible for you. We've surveyed 10,000s of venues across the UK and Ireland, including shops, pubs, restaurants, cinemas, theatres, railway stations, hotels, colleges, universities, hospitals and more. Use AccessAble to find wheelchair friendly venues or check out disabled access and facilities."

AccessAble have reviewed all sorts of places and they provide easy and accessible information on the facilities available (with some really cool symbols to represent all different kinds of needs from facilities for people with mobility needs, Blue Badge parking spaces, accessible accommodation, sign language, safe or quiet places, large print, braille, audio format, assistance dogs and more).

All you need to do is put in the location of where you're visiting and it will show up the places nearby that have been reviewed.

Changing Places 

Changing Places symbol
Changing Places are specially adapted toilet facilities as well as having standard toilets with grab rails and an emergency red cord like in you average accessible toilets Changing Places are a bigger space and also have changing tables and hoist facilities; some even have shower facilities.

The Changing Places Consortium was launched in 2006 on behalf of the over 250,00 children and adults who cannot use standard accessible toilets. 
To use the toilet in safety and comfort, many people need to be able to access a Changing Places, which have more space and the right equipment, including a height adjustable changing bench and a hoist. Without changing places many people are forced to have to lay on a toilet floor. Changing places are also a bigger spaces to transfer onto the toilet, to fit at least two carers into the room and have the clinical waste bin, screens for privacy and plenty of grab rails. Some Changing Places also offer hight adjustable sinks and shower facilities.

The Changing Places website has a map of where you can find your nearest Changing Place, such as at hospitals, motorway services, tourist attractions and concert venues.

As well as the map there's also a feature where you can plan your journey and it will show you where all the registered Changing Places are located along your route.

Example of a Changing Places facility

Sunday 2 June 2019

One Second Every Day - May: Week 5

Monday 27th May

Pretty mundane day. Just tried to rest to recover from yesterday. This evening my Auntie and Uncle came to stop over from the night as they've been down south so they're staying the night to break up the journey. It's nice seeing family.

Tuesday 28th May

At lunch time Dad and I finished off the film we started to watch the other night.
I then got myself ready to leave the house as I had an acupuncture session. I still get anxious about my seizures but Mel tries to relax me as possible and it is quite relaxing and I am noting that it is helping in some ways, like last week my shoulders where so tight and this week they've really eased off.
I came home an I was exhausted so I had a lay down for an hour and then Dad and I had our tea and I just watched TV for the rest of the evening then went to bed.

Wednesday 29th May

I managed to have a little bath and then I had a rest. I've done my makeup today as I haven't put on any for a while and it always makes me feel brighter.
My advocate called me to remind me that she was coming at 2pm.
She came and we had a chat. I feel so lucky yo have her supporting me as before she came along I felt so voiceless an now I have someone backing me up and getting my care moving rather than just stagnantly not going anywhere and trying to find ways of supporting me until I get my bed for neuro rehab in Leeds.
This evening my step-sister came round for tea then I had a rest and we went to the cinema to see 'The Secret Life of Pets 2' which was really good, plus it was nice to get out of the house.

Thursday 30th May

Enjoying having a day of nothing.
Pain woke me up early so I made myself a coffee and sat up in bed with my laptop.
I'm trying to get in a routine of washing my face every day. I've also put some makeup on again even though I'm going nowhere but it makes me feel brighter. 
I spent some time putting my birthday wish list together and watching TV and laptop stuff as well as trying to sort of holiday insurance which is complicated as I'm waiting to go to neuro rehab Leeds so I need to call the secretary for the ward tomorrow to see if there is a possible chance that I might get a bed when my holiday is booked for in November.

Friday 31st May

Did some more sorting of holiday insurance. As I'm waiting for treatment in Leeds many insurance companies won't cover me for cancellation should I get a bed around the time of my holiday in Leeds but I phoned Leeds, I still have a way to go on the waiting list (they only have 4 local beds and 4 beds for the rest of the UK) so it looks like I'll be waiting a while which is frustrating as I'm so desperate for their support and getting some sort of treatment and management of my symptoms. But, should I get a bed around the start time of my holiday (end of November) they can delay it until after my holiday and being at the bottom of the waiting list. Still at least I'm not on the waiting list and I have the funding. I just feel frustrated that my GP didn't do the referral sooner (it took him 14 months to get round to doing it and I'd probably still been waiting if I hadn't;t of gotten and advocate). So, I can go for the cheaper holiday insurance and save over £120, I just risk not getting my money back if I have to cancel my holiday if I go to Leeds sooner then November time.
Had an appointment with orthotics this afternoon. The person I see is really clued up on hypermobility disorders which is rare for where I live. My knee brace isn't quite doing the job so he's going to send it off for modification. If that doesn't work I'll need a bulkier brace so we'll see if the modifications help. My current brace also isn't really doing much for my patella dislocation so he's changed one of the velcro fastenings to see if that makes any difference or not and to drop it off with a not to see if that's helped or not and also to drop it off so it can be modified. He'd seen another patient earlier that day who's having the same issues as me so we're both going to have the same modifications to try and prevent hyperextension (bending backwards) of the knee. If not then I'll need a different know of knee brace. Only issue with the bulkier one is if I need one for each knee they might catch on each other. Currently i just wear a brace on my right knee but my left is starting to play up.
I'm also getting better insoles for my feet. When he assessed my feet (thankfully I've lost a lot of sensation in them so I can now tolerate them being touched!) he noted that there was significant weakness and power in my feet. So new insoles and if they don't help he'll make me some custom ones.
Home after a bit of an issue with patient transport. They blamed me when I felt it was an admin error and the lady had a bit of a moan at me which didn't;t help my mood and I've already not been feeling 100% so I sent off an email to their 'Patient Experience Team'.

Video description

  • Monday: Taking my medication tray out of a pharmacy paper bag
  • Tuesday: Rinsing a medicine cup under a running tap
  • Wednesday: Photo of cinema tickets for 'Secret Life o Pets 2'
  • Thursday: Scrambling up some egg in a glass jug with a fork
  • Friday: Clicking a task completed on my laptop's 'to do' list