One Second Every Day - January Week 4

Monday 21st January

Spent the morning doing my usual wake-up routine. 
I received quite a lot of phone calls. One was from my care co-ordinator to check in on me after my blip at the weekend which was really good as I've felt since I left the TC that I've been a bit invisible. The other was from my independent advocate letting me know that my GP finally sent of the funding request for Leeds rehab (after waiting 14 months for him to do it). I really do feel getting an advocate involved has helped as I feel it's making professionals like my care-co and GP do their job and it's getting things done and getting my voice heard. We're still going to make an appt with the Practice Manager to raise the issue of how long it's taken my GP to send off for funding and to see if I can change GP.
Had my carer come at 12pm. 
Then at 4pm I had my initial appointment with the Adult ASD (Autism Spectrum Disorder) Team to see if it would be worth assessing me. They was really good and explained everything to me which helped and only one person spoke to me which helped me focused and they really understood "me", which I usually have to explain to people when I have other appointments. They did feel it was worth doing the ASD assessment so I'll be sent an appointment in the next few weeks.

Tuesday 22nd January

Exhausting but good day in London. Dad came with me today.
The journey there went okay, TASL was late but we got to St. George's on time, but Professor Edwards was running late anyway so I got my diet coke fix.
Professor Edwards was great as always. There's not much he can do for me, most of things now is just waiting for Leeds. He's going to continue seeing me which is good as the TC told me he was going to discharge me which sent me into a bit of a panic.
One the way home there was a lot of road closures and RTC's so we had to take the back roads. I didn't have any major seizure which was a bonus but I didn't feel well with a bad headache/verging on migraine and then I got really bad stomach cramps and sickness and I forgot to pack a heat pack but meds helped and I managed to get some sleep.
Home now and Mandy had my night time herbal tea ready for me so now I'm just settled in bed.

Wednesday 23rd January

Had a tonic-clonic seizure this morning so today has been a sleepy haze. The Red Cross was due to visit me but they had to rearrange due to a family emergency. Haven't done must, mostly napped, watched TV and crochet a little. I was too tired to migrate to my bed upstairs so had to make a nest on the sofa instead. 

Thursday 24th January

Made it out the house for some non-medical for the first time in weeks! Successful hunt for jeans, might actually go and get a second pair as I have to crawl around so much the knees ware out. 
Exhausted when I got back so I just rested. 
Today has been a good day for people like myself with M.E. as it was finally discussed in palimony today. Hopefully words will turn not actions. Had another tonic-clonic seizure this evening so when I came round and was well enough Dad helped me upstairs to bed and then brought me up my herbal night tea. I'm currently in too much pain to sleep so i'm just resting and distracting myself. 

Friday 25th January

Had my carer come this morning and we went to the postbox for some fresh air and to post some letters. Shattered afterwards so since then I've been in bed apart from going downstairs for meals. Been quite fatigued and brain fogged and I've struggled to concentre on much for long so went flitted between things like social media, crocheting, YouTube, and easy watching TV as well as napping. I think this morning, seizures and London are catch up on me. At least I can totally rest tomorrow. 

Saturday 26th January

Spent most of the bad on my bed just doing bits and bobs. I managed to have a wash which I haven't managed to have a 'proper' wash since Monday. That tired me out.
In the evening I fast watched my way through Alien catching up on the bits I missed and skipped though the bits I remembered as I was really struggling to concentrate when we watched it the other night. We watched Alien 2 in the evening but halfway through when I went to make myself a drink I had a few tonic-clonic seizures so I was too brain fogged to do anything except get Dad to help me upstairs to bed.

Sunday 27th January 

Slept in and forgot to reschedule my alarm to an hour earlier to get up in time to get ready for church so I had a lay-in and I feel bad about not going to church I haven't gone in weeks but it's a difficult balance of doing things I enjoy but pacing myself and not pushing myself too hard and making myself ill. 
It took me an hour to get out of bed but I got out of bed and had my breakfast downstairs and I brought down my crochet and sat on the sofa and put on some background TV and I've now finished the baby blanket and I'm just about to look at other blanket patterns to use with the yarn I bought. I was thinking of doing another star blanket but it will be nice to do something different.

Video description

Monday: view of a waiting area with a reception desk, grey double doors, a corridor and shelving unit. 
Tuesday: View out of the ambulance window whilst driving and cars and trees going past.
Wednesday: Small glass bottle with wooden beads in and another bead being dropped in.
Thursday: View of laminate flooring and table and chair legs and Flop the guinea pig who has a black, white and tan colour coat running around.
Friday: Red postbox with several letters being dropped in.
Saturday: Silver plug in disc port and a black DVD being ejected with 'Alien' written on the DVD.
Sunday: TENS machine which is white and green with different buttons on and a wire coming out on my lap and a blue digital display screen with different number on and me turning a button up and the number on the display turning from number 1 to 2.

What a day // Health Update [CC] YouTube video

So I made a video as it was easier than talking (though maybe I should have done the CC tomorrow and published tomorrow instead of tonight, but oh well).

So what a day. Went to orthotics for a quick appointment to fit my new knee brace and I ended up spending a few hours in A&E after having a prolonged seizure whilst waiting to be picked up to go home. Thankfully I got really good care in A&E.

Home now and about to settle down to bed.

#MEdebate (+ transcript for video)

Today's in parliament M.E.* is being debated finally after 20 years (the last debate was in 1999!).

Here's my virtual contribution. 

Stop GET (Graded Exercise Therapy) & CBT (Cognitive Behavioural Therapy) - it doesn't work.NICE* guidelines need to change. 

Give people with M.E. (/CFS*) equal access to care wherever they live - no more 'postcode lottery' and increase specialist rehab centres.

Invest in biomedical research. 

In the UK 250,000 people have M.E/CFS; 1 in 4 people are severely affected, thats 62,500 people if you put that in numbers.

For to long M.E. suffers are left alone in silence. We want to contribute and be part of society; not hidden away. We deserve better.

Stephen Pound MP gave a really good contribute to today's debate.

[Video CC: "What we're talking about is that we have to change attitudes. You cannot dictate an attitude; we haven't had a dictator in this country since Oliver Cromwell. You cannot say what a people will do. But what you can do is to raise this issue calmly, objectively and using all the pragmatic skills available to us and to actually use the data that's available and I'd like to say to all those people out there suffering from M.E.; all those people who suffer from Chronic Fatigue Syndrome; all those people who've been ignored and belittled and insulted in many cases, this house recognises the reality of your condition. This house will not sit idly by whilst you suffer. This house will not ignore you. This house will devote it's intelligence and its resources to research, ultimately to resolve and to cure this terrible condition because we respect you, we understand you, and we give credit and credibility to what so many people have for far far too long been denied. M.E. sufferers the world over must know that this house and this nation is finally speaking for you."]

Thank you to all the MP's that went along to the debate today. Hopefully change will happen.

UPDATE

Watching the debate was very moving. Seeing such support for people like me and hearing that parliaments agrees that GET and CBT do more harm than good and that more biomedical research is needed and that M.E/CFS needs to be seen and treated and a physiological condition. That care professionals need to change their attitudes and that areas such as education, work, DWP and housing also need addressing. MP's also read out case studies from constituents in their area with M.E. and hearing their stories made me feel like I wasn't alone in my struggle with the condition.

To follow and find out more about the date search #MEdebate on Twitter.
The full debate can be found on Youtube here.

I also wanted to highlight how the PACE trial contributed towards the NICE guidelines developing the GET and CBT care for people with M.E/CFS. The PACE trial was deeply flawed and the results altered to make it look like GET and CBT worked for people with M.E/CFS. 

My favourite YouTuber Jessica Kellgren-Fozard makes a great video examining what is the PACE trial and how misleading it was.

* (Myalgic Encephalopathy)
* (National Institute for Clinical Excellence)
* (Chronic Fatigue Syndrome)

One Second Every Day - January Week 3

Monday 14th January 2019

Struggled to get up in the morning. Did my usual morning routine and then got myself dressed and did and extra tidy of my bedroom and the bathroom. 
My nurse from Bluebird Care came round for a catch-up at 12pm and then at 1pm my Care Supervisor at Bluebird came round to join us for my home OT assessment. The OT came and she was lovely and she went through a questionnaire with me and then one of her colleagues joined us. 
I feel like the assessment went well and I was listened to. Some of the things we're going to trial is a bed raiser that will raise the head of my bed up and down for when I need to sit up or lay down without having to struggle with cushions and also instead of my bath board where I struggle to lower myself on and off the bath board into the bath they've suggested a bath lift to trial. Some things where a bit of a no-go as Dad and my step-mum aren't keen of the idea of things like grab rails drilled into the wall. The OT is also going to write a medical needs letter for housing for me to use if needed should I get funding for care so I can apply for an accessible adapted property. 
The OT, she's also going to speak with the home physio team to see if I can get home physio as my GP wouldn't authorise it (but didn't give and explanation as to why or ask me why I felt I needed home physio) so hopefully that will happen as I'm really going to struggle to get to the hospital and back which how my health has been. 
During the assessment my muscle spasms started to play up and I needed to take my lunch meds and Dennis was going to make me something to eat after to assessment and when I went to take my tablets I realised I forgot my breakfast meds (major oops!). 
Towards the end of the assessment I was getting quite tired and I had a few myoclonic seizures and then I suddenly had a tonic-clonic seizures, and then another and another and it went on for over half an hour. My nurse and care supervisor tried to leave off calling 999 as they know how much I hate ambulances and A&E but it got to the point where they had to call for an ambulance. 
Stupidly EMAS (for the second time now) sent an EMT crew to me who aren't qualified like paramedics to cannulate or give IV diazepam like my care plan states and they weren't happy to give me any of my own liquid oral meds incase I aspirate on them. My nurse and care supervisor tried to persuade them to let me stay st home as they can stay with me but they said as they was there now it was protocol to take me into A&E. 
Thankfully my nurse followed the ambulance and stayed with me in A&E for a while and whilst she was there she gave me me diazepam and some oramorph which a) A&E would have taken A&E hours to get round to doing or b) wouldn't give me the medication despite my care plan. My nurse had to leave but I only had to wait on my own for about an hour/or two (time was a bit blurry) staring up at the ceiling (hospital seriously need to have more interesting ceiling if you have to lay looking at them). I'd managed to speak with both Dad and my step-mum with m nurse's help and when my step-mum was free she came with shoes and my crutches to pick me up form A&E and go home early as when the Dr saw me and my nurse had said what meds she'd given me he said they'd just "monitor me" aka laid on a trolly in the corridor with no one at all coming and checking and asking me how I was. 
So my step-mum came and we got home where I got more care and monitoring than I was getting (as usual) in A&E. I had a little cuddle with Flop and then went up to bed and my step-mum got me something to eat as my blood sugars where low (unsurprising as I hadn't eaten since breakfast) and I also needed to take my meds. As a distraction I sat in bed and did some blogging and wrote some PostCrossing postcards. 

Tuesday 15th January 2019

Woke up this morning in a heck of  lot of pain due to my right shoulder being dislocated so I took some pain relief and put something to watch on my laptop. I can't wait to get this bed head raiser as it will be so much easier than having to mess around with cushions, especially when you're in sky rocketed levels of pain. At 11.30am I had someone from the Red Cross come round just to chat to she posted some letters for me. In the afternoon I had my Bluebird visit which was moved over from yesterday. I was quite tired after so the rest of the evening was just spent not doing much.

Wednesday 16th January 2019

I started on a new crochet project today making a baby blanket for a friend a church. I also got round to finally cleaning Flop out. In the afternoon I had my physio appointment. It was a new referral even though I've been before so most of it was paperwork, questionnaires and just a physical assessment. It was with my favourite physio and there was also a new to the department physio that joined us just so he can learn. I've got some exercise to do and once I get my knee brace fitted we can start some work in the gym. I've worked out how to sort out patient transport so they arrived just before I finished with my physio so there was no waiting around to go home. The rest of the evening I just spent crocheting and resting.

Thursday 17th January 2019

I had my carer 11.30am-1.30pm today. It's been quite cold today so most of today has been trying to hibernate and keep warm and do some crocheting. I also had a home visit from my support worker at L&H who's going to look into getting a befriender for me as the Red Cross is only short-term support. I had a seizure just before tea so Dad kept it warm for me and I was pretty tired and out of it so after I ate I went and laid on my bed an put on the TV and had a doze but I tried not to sleep too much so I sleep well tonight. I've typed up two short letters and now i'm just about to settle down and go to bed.

Friday 18th January 2019

Struggled to get up this morning then at 11am, still in my pj's one of my carers turned up. The office had changed the time without letting me knowing which was super annoying. My carer and I went out and got some (cold) fresh air for something a bit different. I've spent most oft day in the sun room for a change of scenery and made it toasty warm with he heater in there and got on with crocheting the baby blanket that is my current project. It's star shaped and is really easy to do and I've ordered more yarn and I'm going to try and make it as bi as possible and I showed my friend a picture of it (as its for her baby) and she loves it which is really nice and she's invited me to the baby shower party in March. 
My friend also popped round for a few hours and we had a good catch up and drank tea. I got lost in my crocheting and went to bed later than I wanted to and now i'm struggling to get off to sleep due to pain and it s that verbalised achy background persistent pain and one of the problems with FND is that pain signals can remain switched on in the brain for days, weeks, months and even years and pain relief meds don't always work so it's just a case of trying to distract yourself as best you can.

Saturday 19th January 2019

Had the worst sleep reversal I've had so far. Didn't get off until around 4am and then forced myself out of bed at 11.30am-ish (but could have stayed in bed way longer), thankfully I took my 10am meds before nodding back off. Today has mostly consisted of crochet, easy watching TV, crochet, rest and cuddles with Flop. I've also really struggled with my PTSD today so ended up picking up the phone for support and I was encouraged to taken my PRN meds and I'm now settled in bed with distractions and self-comfort and I'm also glad that this morning I found 'Mouse' as I thought I'd dropped her out of my pocket and lost her somewhere. So now for an early night and hopefully better sleep.

Sunday 20th January 2019

(Writing this on Monday so can't quite 100% remember what I did) Struggled to get up this morning so didn't make it to church. Spent most of the day resting, watching TV and getting out my sticker-by-numbers book which I haven't done in a while. I've not been able to work on my crochet blanket as I need more pink yarn. I also got a letter finished off to one of my pen pals. I'm trying hard to get into a sleep routine so I did that at bedtime.

Hope list...

• That the new OT gadgets will help 
• That my care in A&E will improve and my admissions this year will reduce.
• That having the Red Cross coming round will help me and give me some company and that my support worker from L&H will be able to find me a suitable befriender that I can feel safe will and leave the house with
• That my sleep routine will improve and help me
• That next weeks appointments go well
• That next week's PEM won't be too bad

Video description: 

• Monday, a view down an A&E corridor. 
• Tuesday, a still picture of the Red Cross leaflet. 
• Wednesday, a view of the physiotherapy department waiting area with different types of chairs and information notice boards. 
• Thursday, me stirring a cup of milky white water and powder with a green measuring spoon (one of my nutritional supplements). 
• Friday, a video clip of me crocheting. 
• Saturday, me going Flop the guinea pig a pice of broccoli stalk. 
• Sunday, me placing a sticker on a sticker-by-numbers book

Health update

So, I haven't done one of these before but I thought I'd give up a bit of an update.
The past few months my health has gone downhill but I'm seeing my neurologist on the 22nd and I've managed to bring forward my rheumatology appointment. (Both are in London so it will be exhausting but I'm seeing some really good specialists).
More recently I've not been my "usual" self. Christmas really knocked it out of me. Despite trying to pace myself and delegate my energy and sit out of certain things and focus on the positives like seeing family and playing lots of games. I think it might just have been the general busyness and having to do more than I normally do.
This month I'm back to eating some wheat/gluten each day for my coeliac test which is making me feel rubbish and majorly flaring up my  gastro pain and other symptoms. 
On top of that I've had a viral infection for the past 10 or so days; (with M.E. you usually have ongoing flu-like symptoms) so I've been sipping Lemsip's and some herbal tea for colds and flu I picked up at Orchard Barn (which actually helps) - I keep meaning to getting round to writing a blog/vlog about Orchard Barn and Integrative Medicine so look out for that. 
And then this past weekend I've had a really bad migraine; Saturday I was just laid in bed in the dark with my noise cancelling headphones on listening to an audiobook on the lowest possible volume.
Then yesterday I had a prolonged seizure episode and had my first trip to A&E of the year.
So all-in-all it's been a pretty rubbish time, but I'm trying to stay positives as difficult as that can be and stick to my word 'hope' for 2019. 

Birchbox: January 2019

 January's Birchbox was filled with some lovely treats which I all love and can't wait to try out including...

CLĒ Cosmetics, Essence Moonlighter in 'Copper Rose' (Full size, RRP £22) - This product is infused with pearl powder to highlight your face. I already have a highlighter on the go which is a stick so I'm excited to try out a different kind of highlighter. This was the lighter of the two shades to choose from so hopefully it will go with my pale skin. But I've tried it out on the back of my hand and it's a really pale shade and is very sparkly (and I know how much I love my glitter!)

 Afterspa, Facial Micro Scrubber (Full size, RRP £7) - Just what I needed! Really excited to try this product out when I next wash my face! I've just opened it up and it's a little hand mitt so it will be really easy to use. One side has the facial scrubber and on the other side is a soft flannel so its kind of a 2-in-1 product for washing your face and the exfoliator side doesn't feel like it will to harsh on your skin but will still give a nice exfoliation scrub.

*Update* just used this to wash my face and it's amazing! the flannel side was great to wet my face and rinse my face of and the scrub size worked well as an exfoliator but was still quite gentle on my skin and it's made my skin loves and soft ad hopefully using the exfoliator with my face wash will help clear out my pores.

 Dr. Botanicals,  in 'Lemon Superfood Nourishing & Balancing Cleansing Bar (Full size, RRP £5.90)  - Perfect timing as I've just finished my shower gel and I like washing with soap as it lasts ages and this bar of soap smells lovely and refreshing. It's also cruelty 
free and vegan and formulated with 98% natural ingredients.

 Sand & Sky, Brilliant Skin™ Purifying Pink Clay Mask (Sample size) - I love a face mask so looking forward to using this in a little self-care pamper session or pack in in my travel bag for a stay away or for hospital when I need a bit of a treat. 
This product has a "4-in-1 formula to detox, invigorate, refine and brighten your skin. It has aloe vera and pomegranate to tighten pores for a radiant skin."

A little something extra. You can never have too many hair bobbles, as they often grow legs and go walk-about and you literally find them everywhere, especilally if you have long hair!

I also got a sample size Philip Kingsley Flaky/Itchy Scalp Shampoo which I've given to my Dad.

Now to go wash my face before bed!...

One Second Every Day - January Week 2

Monday 7th January

So I woke up pretty early this morning due to pain because my left wrist had decided to dislocate and due to the pain despite being tired I couldn't nodded off. Thankfully some pain relief helped and I put my brace on too. I sorted out my meds for the day and took my breakfast meds and then had something to eat. I then dozed on the sofa and then migrated to bed. I then slowly got myself washed and dressed and put on some make up.
Just after 2pm Dad and I left the house as we had a meeting. at 2.30pm I met my new advocate and then at 3pm we had a multidisciplinary meeting.
The meeting went okay; it helped having my advocate there. We came up with a plan, it just hoping that that plan actually happens and it put into place. We decided it wasn't time for me to restart to TC and my physical health needs to be sorted first.
I was pretty wiped out when we got home and my stomach and nausea has been quite bad since I've gone back to eating some gluten for my coeliac test so I curled up on the sofa with a wheat heatie and some herbal tea Dr Sally made up for me and I ended up dozing.
We then had tea and after tea Dad, Mandy and I watched a film called 'Dumplin' which was quite good.
I've been struggling with flashbacks this evening so I've been distracting myself with YouTube as even though I'm physically and mentally exhausted I know if I went to sleep I just be laid their with my mind in overdrive and making me go into crisis. I've now finally taken down my Christmas cards and I've put the TV on and I hope to get to bed too as I have to be up earlier than usual as one of my community nurses is going round at some point between 9am and 1pm.

Tuesday 8th January

Woke up feel awful and not helped by not taking my night meds when I opened up my tablet box. I slept through my alarm but thankfully my community nurse didn't come until around 11am and I apologised to her for still being in my pj's. Lemsip, cyclizine (anti sickness) for breakfast (and then some porridge when the nausea settled). After the nurse left I was too tired and ill to make my way back upstairs to bed so I slept on the sofa. I've been sipping on some herbal tea for colds and flu that I picked up from Orchard Barn and I think that's helping. It's now 2.50pm and I more awake and feeling a bit better but my vision is still a bit burly and i'm still feeling quite dizzy and weak but I'm feeling a bit more human and I've got out my clothes, though it was tempting to stay in my new pj's (brushed cotton zebra print pj's). I did have an appointment this afternoon with my support worker from L&H but I text her to cancel so I could rest and we've rearranged for next week. I spent the afternoon sipping on herbal tea and resting in bed and had an early night.

Wednesday 9th January

Had my carer this morning. Needed to run some errands. Finally dropped off my old inhaler canisters and medicine bottles off at the pharmacy to be recycled/incinerated (it was quite a large bag!); we then had to nip back home as I forgot to pick up my Next parcel to return. We then went to Next and returned the jeans; I tried on some other ones I saw but they weren't comfortable when I was in a seated position which is kind of essential for me. In the accessible changing room the emergency red cord (one of my missions for the year) was tucked up on on of the hooks as well as tied up so I unhooked it and put on a Euan's Guide card and informed the lady on the tills that the red cord needed unknotting and that I'd left and info card. 
We then trekked over to Tesco. I took some photographs to upload to my Euan's Guide review. The emergency red cord in the toilet was untied but I still left a card. I sent a tweet to both Tesco and Next and Next replied asking which store it was and hopefully they will rectify the issue (the power of social media!). When we got to Tesco I was due a drink and my carer wanted something to eat so we sat in the café for a bit and then did our shopping. 
I got home and waited for my hairdresser to come and trim my fringe. I then updated my Euan's Guide review of Tesco's. 
My step-mum and I then watched the New Year's episode of Doctor Who and I was nodding off so when it finished I when an had a nap. 
I've got a couple of PostCrossing postcards to write and I received 2 letters today from my pen pals so my plan for the rest of the evening (depending on energy levels) is to write some letters or postcards and watch Silent Witness.

Thursday 10th January

Still feeling full of cold and general yuckyness so stayed in my pj's until  my carer came. Was planning on posting some mail but just decided to get a bath and have Jess help me make some lunch. Tired out after so just laid on the sofa with the TV on. When Dad got home he made tea and we watched a documentary. In the evening when my step-mum got home we watched a crime drama and then I headed to bed. 

Friday 11th January

Struggled to get up this morning. Spent a while in my pjs getting distracted before finally getting dressed mid-afternoon. Once Was dressed I was tired out so I curled up on the sofa with a wheat heatie. Myoclonic seizures and muscle spasms where playing and they were going on for a while and I couldn't use my phone so I called CareLink to call my step-mum for me. This evening some friends of Dad and my step-mum's from church came round and I joined them to play some games before my body decided to have a few seizures. A friend from church also asked me if I could crochet a baby blanket so that will be enjoyable to do.

Saturday 12th January

Not had the best of days. Woke up usual time in an attempt to get into a wake-up routine. Not long after having breakfast whilst watching TV I had a seizure which I had not warning about. Dad tucked me up in a blanket and closed the blinds in the living room and told me to get some sleep and I had a few hours sleep on the sofa. Waking up I felt a bit groggy and realised I missed my breakfast/morning meds - (major oops!). I watched TV for a bit but felt utterly yuck. Slowly feeling worse I migrated to my bedroom to lay on my bed and watch something on my laptop but a migraine was slowly creeping in. I took some PRN (as and when needed) medication including sumatriptan (migraine prevention meds), paracetamol, dextrose and cyclizine (anti-emetic aka anti-sickness). Migraine worsening I switched off my laptop and put on my noise cancelling headphones with Harry Potter on audiobook on the lowest volume possible and laid in the dark and half dozed and tried to keep sipping on juice. I spent the rest of the afternoon/evening in quiet and darkness, even using on a small light to take my tablets hurt. Medication did help and although I did have some very minor hemiplegic migraine symptoms it wasn't full-on hemiplegic, more and a migraine with aura (with severe eye pain) with minor hemiplegic symptoms. 

Sunday 13th January

Feeling much better than I did yesterday. Got up at my now usual routine time but stayed in bed (awake) for the morning, partly to rest and partly because I got side-tracked with an issue with one of my email accounts. This afternoon  I was productive and sorted out all of next week supplements into my new pill box thing. I started to feel a bit unwell and a bit headachy so I laid on the sofa in the dark with a heat pack for a while. After tea I took my Shellac™ off and painted my nails until I can get round to doing them with Shellac™ again. Dad was going to wash my hair but I decided to delegate my spoons/energy into my nails and wash my hair tomorrow. I'm now tucked up in bed with a wheat heatie, my aromatherapy diffuser on and ready to listen to some Harry Potter and get to bed at an acceptable-ish time (it's a few minutes after 11pm and my aim is to try and get settled down around 10/10.30pm so I'm slowly bringing the time down. The joys of M.E. and sleep reversal/insomnia.

Video description:

Monday: dropping a bath bomb into the bathtub

Tuesday: putting herbal tea into a blue dinosaur shaped tea tea infuser with a measuring green teaspoon

Wednesday: my hand opening up with my morning medication in my hand

Thursday: my one-cup during water into my cup

Friday: the microwave going round with my wheat heatie inside

Saturday: a black scree to represent the day that I spent the day in darkness due to a severe migraine

Sunday: me painting my nails with grey polish and a bottle of matte top coat

Disability representation in retail

https://www.bbc.co.uk/news/uk-england-bristol-46827850

In the news recently a bridal shop has come under praise for having a window display with a mannequin sat in a wheelchair, and whilst this is amazing and is showing inclusivity of disability in the retail industry instead of celebrating should we be asking "why isn't this the norm?".

Artist and TV presenter Sophie Morgan (who herself is a paraplegic) has designed a product called the 'Mannequal' - "a wheelchair for mannequins that is both a style guide for wheelchair users and a symbol of inclusivity".

British businesses could be losing out on a potential £420 million a week by failing to target disabled consumers. - BBC News 

But as well as wheelchairs why can't other disabilities/impairments be shown in the retain industry. Sure having a mannequin sat down give you an idea of what clothes are suitable if you're in a seated position (something that I'm faced with myself when clothes shopping). But What about the scope for mannequins with prosthetic legs or an arm amputee like the model Kelly Knox who won the modelling show 'Britain's Missing Top Model'. Of course only visible disabilities can be shown but I think that mannequins who are "differently normal" and represent disabilities/impairments should become the norm as after all there are over 11 million people with disabilities/chronic illnesses/impairments in the UK*.
*UK Disability Facts and figures

All-in-all I think that the retail industry has a long way to go, but little gestures like the bridal shop and stores using things like the 'Mannequal' are making progress in representing consumers with a disability. 

Sophie with 'Mannequal'

Jessica Kellgren-Fozard

So I've come across this vlogger Jessica Kellgren-Fozard.

I first came across Jessica in a BBC 3 show called Britain's Missing Top model which was aired several years ago. This was a TV show where women with a variety of disabilities took part in different modelling challenges from pin-up photoshoots to TV adverts to catwalk shows.

Jessica has her own YouTube Channel which can be found here. When I started watching her videos I instantly fell in loved with her style and the ways she talks and presents the topic of her video. (We also share a love of Diet Coke)

Watching Jessica's videos has taught me a lot. They've helped me embrace my disabilities/chronic illness and accept that I live with a dysfunctional and often uncooperative mind and body. But also that even though she posts about her disabilities/chronic illnesses that there's more than just that in her life - her love of fashion, vintage things and her lovely wife and dogs, and it's made me look at what I love; putting my disabilities/chronic illnesses aside even though they're still there 24/7. And Jessica's video today where she films herself mid migraine and in pain she's taught me that I don't need to be wearing makeup and a smile, or even day clothes when I make my YouTube videos and grow my channel, so I'm going to go ahead and try and make more videos even if I'm still in my pjs or not wearing makeup or when I'm having a bad symptom day.

 

Jessica has also shown the possibilities of life with a disability/chronic illness. That I can still do things, but maybe in a different way, or maybe with a bit of humour. 

She also fights for the equality and impact society has on people with disabilities/chronic illnesses - especially the straw ban! And she does it with style and humour which I love.

I'd really recommend checking out her YouTube channel.

It's easy watching, especially if you're too brain fogged to watch the TV. There's videos on all sorts of things including disability topics, quakerism, videos with her wife, lookbooks, BSL signs  (Jessica herself is deaf) and even some Low FODMAP recipes!

On this post is a snapshot of some of my favourite videos and a selection of topics she makes videos about.

    

One Second Every Day - January Week 1

Tuesday 1st January

Got up and slowly sorted myself out and made my way downstairs. Stayed in my pj's and watched TV. 
Determined to keep to my 2019 goals I got dressed in my dinosaur pinafore dress and put on some make-up. 
Didn't quite manage my goal of taking all my meds and physio but I have all year to work on that and maybe I'll do some yoga before bed if I'm not too tired. 
Mandy and I are currently watching the final episode of Desperate Housewives - what are we to do now?! 
Netflix also deleted Pretty Little Liars so I sent them an annoyed Facebook message and Tweet. Hopefully they will get back to me.

Wednesday 2nd January

Spent most of the day in bed, though I did get dressed (just) before 12pm today, though it was a no make-up comfy clothes day, but we're all allowed days like that. 
It's been quite a productive day. I made a list of everyone I wanted to put in my birthday book and sent them a message and as each person contacted me I put their birthday in my birthday book and ensured I had their up-to-date address. I also went through the upcoming medical appointments an ensured I had them in my iCalender (when my diary arrives I'll do the same). I also called orthotics to see if my knee brace had arrived and I also booked an appointment for my celiac blood test in 4 weeks but if the gluten makes me too ill I'm just going to call it quits. The dietician said 2-3 of bread per day should be enough so that's what I'm doing and eating gluten free the rest of the time. 
I've not been good at taking my empty stomach meds (saccuharomyces boulardii - how to pronounce it I do not know!) today but I'm working on getting better at remembering to take it. 
(Writing this in on Thursday). In the evening we watched Tuesday's and yesterday's 'Luther' episodes but I had a prolonged episode of seizures so I need to catch up on what I missed. Dad go me comfortable on the floor when I came round but I was still full body myoclonic spasming and my speech had gone stuttering. After a short while Dad got me some pain relief and then helped me up to bed and put the TV on as a distraction and kept checking in on me. I was still spasming for quite a while which kept me awake. I eventually gave in and asked Dad to draw me up a little bit of diazepam. I generally play it by ear as to what to take and how much but where possible I try and step medication up so I started with a little bit of pain relief and pain can make my spasms worse as my brain is misfiring signals and then take it from there. It took a while to get off to sleep so I gave myself a bit of a lay in.

Thursday 3rd January

Managed to just about take all my meds properly up until the evening where I took my meds later than I should have (but there's always tomorrow to try and get it right) but I have remembered to take all my empty stomach meds! I also managed to put on a dress and leggings and put on a bit of make-up today. I've spent most of the day on my bed either making cards (and then tied up) or putting letters together (and tidying up after myself again, even if it did require a break in between). In between the card making I got dressed (around 2.45pm), rested, made a few phone calls and received a few - rheumatology at UCLH called and they've brought my appointment forward and made it a face-to-face appointment as I sent an email saying that my health has declined and I've managed to get it on the same day I'm at Cleveland Street for the COPE Pain Management intro session so even though it will be a super-exhausting-early-start-late-finish day it just means one trip to London and I can sleep in the ambulance and I have some in the back with me should my body decide to throw a protest. I also did my make-up and caught up on the second episode of Luther which I missed thanks to my seizures. It's much nicer having a tidy bedroom and I'm pleased with myself for keeping it tidying as it's so much more peaceful, even if tidying up is exhausting. I need to find a tidier way of writing letters! I also asked Mandy if she could help me to organise my wardrobe so all my clothes hang in some sort of order to make it easier to find things (that is when I'm wearing human clothes and not pjs!). It's day 2 of my gluten coeliac challenge and even though I'm just eating 2 slices of bread a day it's starting to get to me. I just hope I can last the month. This evening we watched the 3rd episode of Luther but my concentration was atrocious so i may need to rewatch it tomorrow. Right, now Dad's brought upstairs my night time herbal tea for me it's time to get into my pj's and settle down.

Friday 4th January

Spent the morning watching TV in bed. 
After Dad got back home form his little bike ride I got washed and dressed and did my make-up. 
Uncle Mark and Holly came round for tea. Holly had a cuddle with Flop and then we let him have a run around on the floor.
At 7.30pm I meant some of the girls from church at Starbucks and we had drinks and chatted. We then headed over to the cinema to watch 'Mary Poppins Returns' which was quite good. I've been good with taking my meds today though my bedtime doses where late because I was at the cinema. 
When I got home I took my meds and uploaded reviews of Starbucks and the cinema onto Euan's Guide.
I'm now going to get into my pj's and into bed as it's getting quite late.

Saturday 5th January

(Writing this on the Sunday so can't fully remember what I did so I putting in what I'm remembering and i might be a bit disjointed and out of chronological order). I know I managed to get all my meds taken and on time - yay! I also did some letter writing and tidied away after myself. I did do some more clearing out and reorganising. Mandy also helped me sort out my wardrobe. I did go to bed a bit late. I'm planning to hopefully slowly reduce the time I'm actually going to bed so that eventually I go to bed at the time I need to go to bed to give myself enough sleep. Main issue is pain, getting comfortable and getting distracted even though I'm physically, mentally and cognitively exhausted and can't actually focus on what's distracting me. My stomach was also hurting quite a lot. Oh, my Paperchase order arrived a few hours after contacting them asking where my order was. So I spent some time setting up my diary.

Sunday 6th January
Woke up in time to go to church and got dressed, meds and breakfast in time but wasn't feeling 100% and I was quite tired (more tired than when I actually finally went to bed) and feeling unrefreshed. So instead I heated up my wheat heated and curled up on the sofa and watched TV as I knew if I went back to bed I'd be in too much pain with my tummy to sleep, though I did dose on the sofa. I'm trying really hard to eat enough gluten for my coeliac test as its starting to get to me.
I've spent most of the day curled up on the sofa and then early/mid afternoon I migrated to my bed and did some blog updating which took quite a long time. 
I've just had tea and yesterday one of nails broke so my Shellac on that nail looks awful so I might take my Shellac off tonight. Dad also suggested watching a film. 
Also, my highlight of the day (and rather sad) was Beth giving me a tub of dairy free Ben & Jerry's ice-cream!!! I've always wanted to try it and now I can; I didn't even know the sold it locally! 
Film watched, it was called 'Birdbox' and it was really good. I haven't gotten round to doing my nails but it's something to do another day.
I'm now settling into my nighttime routine of putting on my aromatherapy diffuser with 'sleep better' aromatherapy oil, putting on my pj's putting on 'sleepy' moisturiser and an audiobook and sipping on some nighttime herbal tea. I'm trying to get to bed earlier and into a routine with is one of my missions for this year.
I've managed to take all my medication correctly today except one tablet as I forgot to put the timer on on my watch after I'd had some lunch.

Video description

Tuesday: coffee cafetière plunger going down

Wednesday: address book and birthday book being opened

Thursday: mail card being opened

Friday: Cinema ticket to 'Mary Poppins Returns' being held

Saturday: stationary and writing supplies spread out on the floor

Sunday: laptop open on my bed

2018's Warrior Beads

• 81 tonic-clonic seizures episodes
• 27 appointments
• 8 long distance appointments (1 in Sheffield, 7 in London)
• 12 incidences where I've needed IV drugs/infusions
• 14 cannulas/blood draws/injections
• 10 trips to A&E
• 5 ECG's
• 13 ambulances
• 3 x-rays/CT scans
• 5 incidents where I've needed oxygen
• 5 days of having an EEG
• 5 days in hospital
• 1 time of being nil-by-mouth
• 2 OT appointments/assessments
• 1 new wheelchair

[Image description: multicoloured beads representing different things, there are also some heart shaped beads ad some beads shared like transport vehicles/sea animals. In the centre are beads spelling 'Naomi' and an angel bead and large glittery bead.]