Monday, 31 December 2018

2019 goals and missions and my word for the year

So I'm not one for setting New Year's resolutions but there's some things that I would like to do more of and set myself to do next year:


  • Do my nails and make-up more often plus dress-up more
  • Keep up with my 'One Second Every Day' project (and remember to do it each day!)
  • Continue working on and growing my blog
  • Remember to put image descriptions on my blog and on my blog's social media accounts.
  • Grow my YouTube channel and improve my video making skills
  • Write reviews for Euan's Guide (online accessible places trip advisor)
  • Make it my mission to improve the accessibility of red cords using the red cord cards I've ordered fro Euan's Guide
  • Get into a better day and sleep routine
  • Remember to take all of my tablets correctly and on time
  • Get better at doing my physio exercises/stretches and 'Yoga for M.E.'
  • Keep my bedroom tidy and tidy up after myself (even if it requires a nap/breaks)
  • Keep up with my Warrior Beads project
  • Get back into my Bravery Bottles project
  • Look into going on a holiday with Revitalise (accessible holidays for people with disabilities)
  • Make Instagram stories and create highlights to document my year
  • Get better at sending out birthday cards
  • Keep on top of my emails!
There's more I'll probability add and develop as the year goes on.

2018 was also the year of 'gratitude' I pic a word to try and live by each year. i've been thinking a lot about what my next word will be and lately I've been feeling stuck and low which my health and funding for various things going no happening so I think my word for 2019 might be 'hope'.

[Image description: the word 'hope' written in black handwritten writing]

One Second Every Day: December 2018 - Week 5



  • Monday 24th December - Paced myself today but had a few things on my to-do list. I cleaned out Flop and I did my nails with Shellac. My cousin Becka and her husband Tom are staying for a few days and they arrived this evening. Then my Uncle Mark and his girlfriend Holy came round and so did my Uncle Paul and Auntie Judith and we played some board games which is two to the things I enjoy most about Christmas - family and playing games. Apart from uncle Mark and Holly all out other family live away in various parts of the country so we've never seemed them very often and Christmas is the time of year where I get to see everyone (My Auntie Wendy, Uncle Alan and cousin Owen are coming at New Year).
  • Tuesday 25th December - Up early as family came round for 9am to open presents. I started to eel a bit off so Dad got me into bed and I went back to sleep for a few hours. Mandy was at work for a few hours today. I got some lovely gifts. During the day I just chilled out and watched TV. In the evening family came round and we played some games. Unfortunately I had a few seizures which I had no warning of which has been happening more lately. When I can round my brain was a bit scrambled so I just sat and watched some easy watching TV and Gracie my cousin's mini (literally) dog kept me company which was the best medicine. One of my favourite presents was an aromatherapy diffuser. You put water and essential oil in it and it sends out a scented mist which makes the whole room small lovely. It also has a light function so you can either have it as a colour changing light or as a set colour (or off if you don't want it on).
  • Wednesday 26th December - Slept in recovering from yesterday. In a bit of pain and I'm feeling tired. Dad and Wes have gone to Leeds to watch the football so the hose was nice and calm which was nice. Mandy and I watch some TV together and then I had a nap on the sofa and then watched a film. I then got out of my scruffy/comfy day clothes and put on some make-up which I've been meaning to do for the past few days. Sandra (Mandy's mum) came round and Dad and Wes got home and we had tea. We then spent the evening playing games including Bananagrams which I got from Dad for Christmas. I tried to have an early night but sleep just wouldn't come. When I last saw Dr Sally she's going to look at what I can have to help me with my sleep.
  • Thursday 27th December - Had a little lay in this morning. Once I was out of bed I got dressed as Beth was coming round. Dad and Wes went out to play golf so it was just Mandy and I. I did my make-up which always makes me feel better and I think in the new year I'm going to try and do my make-up more often; even if I'm not going out as I'm dong it for myself. I've spent today pacing myself. Doing some letter writing, watching a bit of Netflix, resting, updating my blog as I've fallen behind with it. As 'm typing I could really do with a nap but I'm trying not to in the hope I sleep well tonight *fingers crossed* as that's just not happening at the moment. The most ironic thing about having M.E. I find is that during the day you're fighting off sleep yet come bedtime you're a total insomniac! I've just taken my tea time meds and I might have a bath this evening if I can manage it. And I'm going to make sure that I tidy away my letter writing things as it's nice having a tidy bedroom and that should help with my sleep routine and it also suggested for people with M.E. that spend a lot of time in bed that having a tidy room is quite important (I bought a really helpful book on living with M.E.). I also got round to making a Paperchase order today for a diary next year so I can keep a track of medical things as I've found that helpful this year. Yesterday I also ordered some mire essential oils for my diffuser which came today - Dad got me a sleep blend for Christmas but I now have 'Energy' and 'De-Stress' so I can use my diffuser during the daytime now.
  • Friday 28th December - (my computer decided to reboot and even though I saved this post It deleted today, tomorrow and Sunday so I'm typing what I can remember). Spent most of the day in bed resting, napping, watching TV and writing some letters. It's lovely having a nice bedroom to relax in. Early evening my Aunty Wendy, Uncle Alan and cousin Owen arrived. Went spent the evening playing games. Firstly Owen's choice - Fortnight monopoly, then we played tabletop curling which was good fun even though I was rubbish as it. Then when own went to bed we played Codenames which I love.
  • Saturday 29th December - At breakfast Wes amused himself making Flop a new house out of a shoebox and some cardboard. Most of the day was spent replying to letters. Around 4pm Mandy's family started to arrive and her niece and nephew's where very hyper and noisy so I stayed upstairs. I did come down for something to eat but then went back upstairs.
  • Sunday 30th December - Made it to church this morning and it was my first time witnessing a water baptism. After a gentleman I know from the Bible course came up to encourage me to think about getting baptised and another lady I know came to say hello as she hadn't seen me for a while which was nice and much appreciated. I was getting tired by the end and my hand spasms where playing up. I had a rest when I got home. Dad took Wes to Doncaster to catch his train an when Mandy got home from work we watched 'Ant Man' which was quite good. In the evening Dad, Mandy and I watched another film called 'Man Up' which was also quite good and then I headed to bed.
  • Monday 31st December - Set my alarm for 9.30am and 10am to get out of bed but accidentally fell back to sleep and woke up at 11.17am - oops! Got up and had something to eat and watched TV. I then had a wash, got dressed and did my makeup and then Dad and I went to the Post Office as I had a stack of mail and an Etsy shop order to post. I then came home an rested for a bit and then changed my bedding, got something to eat and watched some more TV. Dad and i are now currently watching a film called 'Apollo 13'. The film was interesting. After I watched some TV and Dad helped me do some more tidying/clearing in my room. In the process Dad fond some Christmas presents I though had been lost i the post. Now I'm just settling myself into bed. I'm not going to going to stay up until midnight. partly because I don't feel positive about anything to celebrate and partly because I want to try and get into a better sleep routine.

Gratitude List...
  • Ability to go to church this week and for the people that came to talk to me
  • Family time
  • Flop cuddles
  • My Dad taking me to the Post Office
  • Pen pals
  • Quiet moments this week


Disability and BBC's The Apprentice


I've been meaning to make this post for a while. As This year's The Apprentice has been and gone and as I do every series I wonder "could someone with (particular) disabilities/chronic illnesses" ever participate in such a show despite the findings that "Disabled people make the best entrepreneurs" (link to BBC Ouch! podcast).

For those that don; watch the show 16 contestants compete in weekly business related challenges such advertising, selling, margin buying etc and each week at least one contestant is sent home. The winner wins £250,000 in a business partnership deal with Lord Alan Sugar, a business tycoon and the money helps them launch their own business.

In the show participants have to be up at ridiculously early times some times and often have very short windows to get ready each week (well, from what they make out on the show); they have to run around from A-Z to complete tasks; access various shops and buildings; work long hours; communicate with each other, customers, potential clients and other people just to name a few elements of the show.

Many of these things would be impossible to adapt, so is the show exuding some great potential entrepreneurs because they have a disability/chronic illness?

Friday, 28 December 2018

December 2018 Birchbox

 

"Twinkle All The Way"

This month's Birchbox was filled with a few extra treats.


 LARITZY Cosmetics Long Lasting Liquid Lipstick in 'Tidal' which is a lovely dark rosy pink colour.

 





Percy & Reed 'Totally Hydrating TLC Mask'
A moisturising hair mask. I've received other Percy & Reed products from Birchbox and received good results so I'm popping this away to use in a little self-care paper session.

Oh K! Bubble Sheet Mask
"This innovative sheet mask reacts with the oxygen in the air to form tiny bubbles when you place it on your face. Not only does it result in a hilariously foamy face but it purifies and smooths skin for a radiant complexion"
This sound quite a fun product to use and I'm looking forward to trying it out.
Rituals - The Ritual of Ayurveda Body Cream
I LOVE Rituals products, they just smell amazing. I've tried theirs other product ranges but I've not used this product range before but I'm sure it will leave my skin smelling lovely.
Benefit 'Chachatint'
'Mango-tinted lip and cheek stain. I already have this product from another Birchbox and love the colour. A little goes a long way so it lasts ages.
Birchbox hair comb. Something I've been needing but not yet gotten round to buying so thanks Birchbox!






I'm really looking forward to seeing what next year's Birchbox's will include. 
My cosmetics/toiletries stash is already quite extensive already but it's nice to have a selection and save products to use and have a little self-care TLC pamper session.

Thursday, 27 December 2018

One Second Every Day: December 2018 - Week 4



  • Monday 17th December - Woke up-okay-ish but it took me a while to get out of bed and downstairs and into 'day mode'. I spent a while in my pj's working on my crochet blanket. Today I've managed to get the first cream border and the black border done; I now just have the final cream border to do and then the check each square for loose threads and the weave in the end threads. I had a fall today (not sure what caused it - faint/seizure/leg numbness/knee dislocation) and couldn't;t get up so the Rapid Response team came round and then my support workers from L&H Homes came round briefly. They're going to look into getting me an advocate and also the idea of getting a befriender. I'm now exhausted so I'm going to head off to bed.
  • Tuesday 18th December - I stayed in my pj's until about 2.30pm and I've just spent the day crocheting and it now completed - yay!!! Now all I need to do is weave in the loose ends and search and any imperfections so I've laid the blanket out on the living room floor (and the blanket is bigger than me!) and tomorrow I'm going to search square-by-square. This evening Dad and Mandy went to a concert so that when I finished my crochet and I decided to take a break. I was going to watch a film that I recorded but it didn't; record the whole film so I watched '50 Greated Harry Potter Moments' instead and then an episode of 'Time Team' and an episode of 'Extreme Cake Makers' before heading to bed. I'm going to wait up until Dad and Mandy are home as they won't be home super late and I'm not keen on sleeping on my own in the house at nighttime if I can avoid it so I've done some tidying in my room as I want to get it a nice place to be in especially as I'm spending more time in bed which ironically means more mess in my bedroom as I'm in there more and don't have the energy to put things away as after using things I'm too tired after so I just get mini piles of stuff but I've cleared one pile, the end of my bed and my bedside table and now I'm exhausted and ready to settle down with some episodes of 'Bones' until Dad and Mandy got home.
  • Wednesday 19th December - I woke up with a really bad headache/migraine so I woke up sorted my meds out and took some PRN meds and then went and got some breakfast and then I came back upstairs to bed. I put on an audiobook but I fell asleep and it sounded a good story so I'll have find out where I was at before I nodded off. I'm back awake again and the sumatriptan (migraine prevention med), cyclizine (anti sickness) and pain relief have helped so I'm going to do some letter writing as I've got a huge stack piled up as all my energy has been going into this blanket and I'm also going to get dressed as Dennis from Bluebird is coming around at 2pm. As well as starting on replying to some letters my plan is also to do the final finishings on my blanket.
  • Thursday 20th December - Got up and ready. Had an appointment with Dr Sally followed by a massage. I refilled up on my supplements and the lady who did my massage recommended I try to hot lava shells massage as there's more heat in them than the stones which might help me more. Dad picked me up and we went home. I was in quite a bit of pain this evening so I just rested and distracted myself with my crochet.
  • Friday 21st December - Went to the hospital to see my friend Nichola to give her her Christmas present and have a coffee. I only meant to stay a short while but we ended up talking for ages. Nichola loved the mug I painted for her and she got me a super cosy blanket scarf and some gloves. When I got home I was shattered so I had a nap. I spent the rest of the evening touching up my blanket.
  • Saturday 22nd December - Woke up a bit earlier than usual but the morning was still slow going. This afternoon I spent a few hours at Alex and Pete's house from church as it was our groups Christmas get-together. I was contemplating giving it a miss as I was tired as I hardly slept last night and didn't manage to get off until the early hours but I took some precautionary diazepam with I very very very rarely do but I was feeling a bit off-ish and I didn't want to have a seizure so I thought I take some just in case and I'd already prepared my veg sticks and dips to take with me and I haven't been to church for a while and when I am at church it's hard to have a chat so it was nice to see everyone though it was very sensory overload. I was shattered when I got home so I went for a nap for a couple of hours. One of the crew members taking me tomorrow called so I feel reassured that I'm not going to be let down at the last minute by TASL. They're picking me up at 7am so I've set my alarm for 5am and I've set 2 back-up alarms to ensure I wake up! I've made my pack-up, packed what I can, got things on charge and now I'm going to get off to bed and hope I have a better night than last night but at least I can sleep on the stretcher in the morning.
  • Sunday 23rd December - Early start to the day; set my alarm for 5am ready for patient transport to pick me up at 7am. Didn't get much sleep on the way there. This was a new clinic with a new Dr today but the lady I saw was lovely and she praised me for doing so well and still smiling despite all life and my disabilities/chronic illnesses have thrown at me. Slept most of the way home and thankfully I had no major seizures like the last few times I've travelled to London. It was a different company today that took me; one that TASL contract out. I was home an absolutely shattered so I just got something to eat, chilled out and had an early night. Richard also came round this evening to pick up the blanket which he really liked so hopefully on Christmas Day Kate will love it too!


Gratitude List:
  • Friends
  • Patient transport
  • Being under the care of UCLH and having lovely Drs there
  • Being well enough to see Nichola and go to the church group Christmas get-together
  • Getting my blanket finished (though now I feel lost with what t do with all my time!)
  • My care agency

One Second Every Day: December 2018 - Week 3


  • Monday 10th December - Got up and did my usual morning routine. My carer then came and there was a slight mix-up with the thing of my hair appointment so we went to the Post Office to post my Christmas presents; we then went to Tesco for a coffee and to pick up some more antihistamines and the we headed to the hairdressers. It's the Graduate Salon at the local college where students get experience. I had a condition hair mask treatment and then she curled and braided me hair. I then can home pretty tired. The rest of the day was spent stitching squares to the blanket which I'm making good progress with.
  • Tuesday 11th December - Up a bit earlier than usual as I had the Wellbeing Team coming round at 11am. When they left I put on some make-up and made a video for my YouTube channel talking about some of the aids and adaptations I use. I then did some crocheting and at 3.30pm I had another home visit from my support workers from L&H Homes. I was tired after they left but I needed to crack on with my crochet but I took a break and some time out to rest. I added the closed captions to my YouTube video. Went to bed later than usual so I was in 'zombie with a head full of cotton wool' mode by the time I was in bed.
  • Wednesday 12th December - Didn't write this on the day so my memory of the day is a little vague. I didn't have Bluebird today so I had a nice lay in and my day probably existed of pacing, resting and crocheting.
  • Thursday 13th December - Up early to get to London. Patient transport was meant to pick me up at 9 but they was late; then we got stuck in standstill traffic on the M1 due to an accident that closed 3 out of 4 lanes so the crew member sat in the back with me called control to call the Pain Management Centre to say we was stuck in traffic and to give an updated ETA and got a call back to say that was all fine. Got to London only to be told we couldn't be seen and they'd have to rebook me in which will now be the end of February. The crew called control and what must have happened was that they must have told the clinic how long we would be held up in traffic for as how late we'd be and not out ETA. Migraine brewing we got back in the ambulance and I took some pain relief and migraine meds. On the way home I had a series of seizures, thankfully I travel on a stretcher for long journeys so that made life easier and I was well look after. Despite issues with TASL themselves I've never had a bad member of staff; they've always been amazing, helpful, caring and supportive. The crew member sat in the back with me got me propped up on my side and got me comfortable as my body had gone in floppy mode; gave me my meds and turned the lights off so it was nice and dark and I mostly slept the rest of the way home bar the pitstop at Peterborough services where they nipped in to buy me a diet coke (a new found chronic illness essential). Home I got something to eat and settled in bed with my laptop for a bit. I feel frustrated that I now have to wait until February to get this COPE Pain Management Program started which delays my hypermobility physio program.
  • Friday 14th December - Had a lay in to rest and recharge from yesterday's pointless adventure. Spent most of today getting on with my crochet as my aim is to get the squares made and sewn on by the end of the week so I can get the border on and sent of to it's new home to be wrapped up for Christmas. Around 2.30pm I summed up the energy to get a bath and get dressed. Brain fog has been quite bad today so it's been a bit of a blur.
  • Saturday 15th December - Struggled get up this morning but I needed to be up as Vicky my hairdresser was coming round this morning at 11.30am to dye my hair. Spent most of the day getting the last few squares made for my blanket and then this evening Mandy, Dad and I watched a film and I sat on the floor (rather uncomfortably) and got a lot of square stitching done before telling myself that I'd done enough and I deserve a rest.
  • Sunday 16th December - Set my alarm for 8.30am to go to church and it went off and all was well, next thing my medication alarm box was going off telling me to take my 10am meds - oops! So no church today. But maybe my body was telling me I needed the sleep as I'm still struggling to get off to sleep. Dad decorated the house for Christmas - I normally do the tree but my body wasn't with it today so I sat and got on with my crochet as best I could instead. (I forgot to update the rest of today so can't remember what else happened)

    Gratitude list...



    • Rosie my carer this week
    • Getting out the house
    • The Wellbeing Team
    • TASL (Patient Transport)
    • My Dad

    Sunday, 23 December 2018

    One Second Every Day: September - Week 3


    • Monday 17th September - Had a bad day at group therapy today. I was in so much pain with my ribs but I was worried about my attendance so I went in all the staff but one was in today and that member of staff a) was filling in as she's usually only part-time in the programme and b) we don't quite see eye-to-eye. At lunch the pain got so bad I wanted to go home but my journey home was booked for 3.15 so I didn't have long to wait so decided to take some co-codamol to see if that helps. In the afternoon I was so tired from the pain and not sleeping well that my head bobbed a couple of times but I stayed focused and apologised and let everyone know that I was focussed and could relay everything every said in group. After the day's group ended I got quizzed about what meds I took at lunch and got told I was on too many sedating meds (even my mebeverine was as its an antispasmodic which drowsiness isn't even a side effect but according to her in all her wisdom it was) and how on the ward my seizure meds are used to sedate patients and I shouldn't be on so many medications. I kindly pointed out that I was tired because I was in pain and I hadn't t been sleeping well due to the pain and that i have M.E. which causes chronic fatigue and I take my clonzepam for my seizures; not for sedation and kindly pointed out that she was a social worker and not a dr so she couldn't t pass much comment on the medications I take for my physical illnesses. Her response was hat she's been in this job for years, which really didn't heave anything to do with our conversation. When I got home I had a nap and rested for the ret of the evening and had an early night.
    • Tuesday 18th September - This morning I woke up feeling seizure-like and true to my premonition I had a cluster of seizures that morning. Thankfully Mandy was still around and she called in sick for me. Later I called up the group therapy and spoke with "that member of staff" as it was still just her and she told me that I sound't be coming to therapy under the influence of so many stating medications (aka medication that have the possibility of making you drowsy) even though I've been on my meds way before I stated the group and not increases to dosages have been made in some time and I've been on the colnzepam since November, plus everyone within the group is on anti-depesseants and/or anti-psychotics which do make you sleepy, tired and brain fogged (!) though i didn't say this. So basically she's put my programme on hold and she is going to speak with the other staff when they're back and then call a meeting wit Dad and myself. The only other treatment option for me is the DBT community programme but according to this member of staff I can;t do that whilst I'm sedating mediations which will leave me with no mental health support which is totally unfair as I didn't;t ask to be chronically ill, especially the M.E., or need to take medication to manage my symptoms and I've racked my brains and there's nothing I can come off without detrimental effects and in my past two medication reviews - one with the my gastro consultant and the other with th pain clinic they're happy for my meds to stay as they are as they're dong their job in keep my symptoms as stable as possible. It was kind of a relief to have the day off from the group as I was still in so much pain as I was able to rest in the morning in my pjs and have a nap then get dressed before having lunch and just listen to my body and pad myself and have another nap in the afternoon.
    • Wednesday 19th September - Spent This morning I got up and ready and my hairdresser came round to cut my fringe before I sorted looking like Doogle the dog. I then spent my time getting ready before heading to the salon for a massage as my backs been hurting; I was a it worried about laying on my front with my ribs but I wedge a towl under me and it hurt but I tried to focus on the treatment. By the end I was in so much pain. When I got home the pain was immense and I didn't feel well at all; I eat sick and had a migraine brewing so I took some medication and went for a nap for 2 ½ hrs. It was Bible Study tonight and I really wanted to go so I though "I'm only juts going to be sitting down for it" and the nap helped a bit. Dad and I had tea and then he dropped me off at church and I'm glad I went as it meant I could keep up with the course and it was a nice distraction. When I got home I went to bed.
    • Thursday 20th September - 
    • Friday 21st September - Not much going on today except my appointment with the Wellbeing Team in the morning. In the afternoon I did a bit of crocheting and had a little nap. I was so cold today so had a bath late afternoon just to warm up and then I got ready and Rick came round and we had tea and played a game of 'His and Hers' (the girls won!), Fix and I ten took out cups of tea and watched a couple of episodes of X-Files (recently got him into it!
    • Saturday 22nd September - Had a leisurely morning and got ready and did my make up. Rik came round and we went to a local art gallery open event in the village; one of the ladies is an old family friend. The other lady holds classes and 1:1 sessions so I picked up some tips to get back into my art and I think I'm going to take up some tuition to build up my portfolio and get me back into my art and textiles again which we be nice. Rik and I then went back home and we just chilled and watched a few episodes of X-Files and had something to eat. When he left I kept X-Files on as a change as my problem is that I get into a show and it will more-or-less be only thing I watch if there's a box set available of it. I'm behind on my quota of squares this week but with my rib pain I haven't been in the mood to crochet but the pain was okay today and I made and stitched in one square and in the evening I managed to make 3 squares and start work on a 4th.
    • Sunday 23rd September - Today was another trek to London; this time for a urology appointment. The journey went well with no traffic jams and we arrived on time. I didn't get much sleep on the way there despite the early start. It was a different company to TASL. I was worried that I couldn't get transport because of Christmas time. It was a new clinic and the Dr I saw was lovely and very understanding of my situation. She's ordered more tests and is going to see me in 6 months. The journey back home was uneventful. I mostly slept. I didn't have any tonic-clonic seizures, but my myoclonic seizures and hand spasms played up a bit. The crew today was lovely and very helpful and I had my stash of diet coke and gelatine free sweets that we picked up from Peterborough services on the way to London. When I go home I just crashed out for the rest of the day.

    Wednesday, 12 December 2018

    YouTube Video: Aids and adaptations I use [CC]

    Second video up on my YouTube channel. This one is about some of the aids and adaptations that I use.

    I've not been sponsored by any of the companies that I've featured but I'll put links below to some of the gadgets I use if you're interested in purchasing them yourself.


    Link to my YouTub channel can be found by clicking here.

    Monday, 10 December 2018

    One Second Every Day: December 2018 - Week 1 & 2

    • Saturday 1st December - Bad M.E. day; I think Thursday is catching up on me (see blog post 'One Second Every Day: November - Week 4'). Thankfully I was able to have a lay-in and I sleep in until 11am. I've had restful day as I've been very tired and in a lot of pain so I've just watched TV (an accidentally fell asleep) thankfully I managed to get my quota of crochet done today. Dad also washed my hair for me so that feel nice as it's been needing to be done but I just haven't had the energy to do it myself as I've been going through a bit of a relapse lately and on Wednesday I decided to go out with Rosie instead of stay in and get her to wash my hair. I also made a post on an FND support group about my experience in A&E on Thursday so the past few days I've been inundated with support and comments. Dad's made a complaint about the conversation he had with he Dr and next week I'm gong to look at making a complaint to the CQC/CCG as in the past Ive gotten no where with PALS but it's nice to have received so much support.
    • Sunday 2nd December - I barely slept last night and didn't get off to sleep until about 4am but I woke up in time to see if I could make it to church but decided I'd be pushing it and I didn't want to push my too far and make myself ill or have a seizure etc so I opted to stay at home and watch some TV on laptop and portly fell asleep mid programme so that kinda answered that questions for choosing to stay home. In the afternoon I just got on with my crochet and just had a chilled out day trying to recover and look after myself.
    • Monday 3rd December - Third bad M.E. in a row. Rather than set my alarm on my phone I though my medication alarm would suffice. Unfortunately it didn't. Normally I set two alarms one to wake me up and the second to ensure I don't fall back to sleep. My alarm on my medication box did wake me up but I fell back to sleep again waking up with a notification on my phone at 12pm so I must have needed to sleep! I got up and had my meds and got something to eat and then just watched TV whilst I got myself in to day mode. I then had a wash and got dressed (which took up precious energy and took a great deal of effort) as I'd said to my Uncle that he could pop round around 2pm and I didn't;t still want to be in my pj's. At 3pm my carer came for a ½ hr call that my care agency are generously offering me for free for the time beings as I've been quite lonely and low in mood. We changed my bedding and my carer hoovered my floor and then we made a quick trip in the car to the post office to post some letters and get some cash out. I've made good progress with my blanket today getting one row done, unfortunately I stitched it on the wrong side but when we measured the blanket on double bed in the spare room we realised that I'd need to do another 3 rows to make it a double bed blanket size so I've ordered more yarn and I'm feeling pretty panicked that I'll get it made in time. The evening was spent having a prolonged seizure. I felt it coming on and laid myself on the sofa but I somehow managed to mid tonic-clonic seizure fall off the sofa with a crash landing on my front so Dad and Mandy turned me onto my back and cushioned me on the floor until I came round. I dislocated my shoulder in the seizure (nothing new) so that's feeling pretty sore. My speech has been stuttering lately post seizure. Once I'd fully come round I got myself upstairs but had a fall on the landing on my way to the bathroom. I'm now tucked up in bed and hopefully I'll have a good night's sleep. 
    • Tuesday 4th December - Woke up relatively okay today. I've mostly spent the day cracking on with my crochet and have managed to make 5 squares today so feeling pretty proud of myself. I've also made some phone calls and have contacted the CCG regarding A&E. I also got a phone call from my district nurse to let me know that my referral to the falls clinic fell through as they only take on people over the age of 65 which was very frustrating as it felt like I was being told that I was too young to be having falls even though I've had 2 today. So I called the Care Plus Group to log most (sort of) complaint as I didn't feel it was fair that I was being denied a service based on my age and I'm sure there are plenty of other under 65 year old in the area that have falls for whatever reason and the lady I spoke with was very understanding and is going to speak with he relevant person and someone will get back to me. The evening was spent not feeling 100% and seizure-isa and I was home alone but it felt reassuring to know that CareLink was there should I need them. As soon as Dad and Mandy came home I settled myself in bed.
    • Wednesday 5th December - Struggled with getting up today and wasn't feeling great. I was planning on going out to pick up my pottery painting bits but I just felt awful so I called Bluebird and asked if my carer could pick them up for me and then make her way to me instead. I also had a new carer shadowing and she was lovely so I hope to see her again. With my care agency I have a 'care team' so a team of regular carers that know me and I know them. My M.E. has really been getting to me the past few weeks, especially the past week with my symptoms flaring and PEM being worse than usual. The afternoon was spent crocheting. When Dad got home from work he made tea and then we watched something on TV. My GP called me and is increasing my zomorph dose as my pain has been worse but we're starting small as I didn't want to whack it up right away. I also have the COPE Pain Managment program for my hypermobility starting on the 13th and I'm seeing Professor Edwards next month and I'm going to prompt him for that M.E. referral he said he'd make when I last saw him and hopefully he can help me with my pain too. I've also ordered another Christmas present so other than my brother that's all my Christmas shopping done. I now just need to get wrapping and posting as I received my first Christmas presents in the post today from my pen pal Olivia. I have stomach ache so I'm sipping on some herbal tea. Because I'm not feeling 100% I've had to give the bible study group at church a miss but someone is going to send me the link to the video so I can watch it at home. My plan is to get as much crocheting done as possible and try and get and early night as since my M.E. flare I've not been getting off to sleep well. It's so ironic with M.E. that during the day you're so fatigued yet you get sleep reversal and are a total insomniac at bedtime!
    • Thursday 6th December - Woke up relatively okay-ish but I did have to drag myself through the morning. I was in day mode by the afternoon. I watched some television which took a bit more concentration today. I did some crocheting, I haven't achieved as much as I have been doing lately but I've accepted that that's okay and each square is a square closer to finishing the blanket so I can get the border done. I had a nap after tea. I also started watching some YouTube videos which was much easier than concentrating on a whole TV program and I set up my YouTube channel which I'm giving a whirl.
    • Friday 7th December - Had an accidental lay-in this morning. Not done much today. My hairdresser came round just after 2pm. Most of my energy is going into crocheting at the moment which is taking its toll on my wrists so I've got my splints out again to just give my writs a break. I'm enjoying rediscovering YouTube especially Jessica Kellgren-Fozard and Doctor Mike. I had a few tonic-clonic seizures when I was home alone but I pressed my CareLink and they stayed with me an called Dad who was on his way home and then when Dad got home he was able to help me get sat up, comfortable and give my meds to me. I had a bath before bed (I'm currently in bed now ready to get some sleep) and my dysautonomia went a bit crazy and my fatigue shot up (I'm feeling better for laying in bed and things have calmed down a bit but I was close to tears with how tired I was). Right, now time for bed.
    • Saturday 8th December - Didn't type this in on the day so my memory of the day is a bit hazy. Had a lay in and spent most of the day flitting between crocheting squares and resting/napping. Pain wasn't great so looking forward to Monday when I start my increased dose of zomorph. Crocheting is a good distraction from the pain but at the same time it's really affecting my wrists which get a bit floppy and weak after a while so I've been having to put my braces on a bit more.
    • Sunday 9th December - Managed to make it to church this morning but I was shattered when I got home so I went for a nap for a couple of hours. I then cleaned Flop's cage out as I didn't get it done last weekend/earlier this week. My dizziness and racing heart has been playing up today resulting in a few fainting episodes when standing up. Mandy helped me wrap some present up as they was awkward shapes. I then got a few squares crocheted and sewn onto the blanket before heading to bed.


    • Gratitude list...
      • Online support
      • Carers, CareLink and my Dad
      • My wrist braces
      • YouTube 
      • Flop
      • Being well enough to go to church
      • Naps


    New YouTube channel

    So as an extension to my blog I though I'd start up a YouTube channel to share more with you and hopefully get up some guest videos.

    My YouTube channel can be found here.


    Writing posts for here can often take me days sometimes weeks; I've even started on some for next year so by talking it might make it easier to share with you some things.


    Each video will include closed captions [CC] and hopefully my video making skills will improve over time.


    Comment below either here or on my YouTube video suggestions for what you would like me to make some videos about and if you would like to share your story in video format just email your video over to diaryofazebrablog@hotmail.com.




    Saturday, 8 December 2018

    GUEST POST by Ella for Crohn’s and Colitis Awareness Week

    This week has been Crohn’s and Colitis Awareness Week – these are conditions that often aren’t widely talked about or known, and I definitely didn’t have awareness of before I was diagnosed at the age of 17. Crohn’s disease was my first diagnosis before EDS (Ehlers-Danlos Syndrome) became an issue, and when it was flared, which it was constantly for numerous years before I found a drug that fortunately put me in remission, it was so so debilitating. I had numerous hospital admissions to have IV steroids and various tests, which was still the case throughout sixth form and my first year at Cambridge and it really turning my life upside down.
    Crohn’s Disease and Ulcerative Colitis are the two most common forms of Inflammatory Bowel Disease, and these conditions affect over 300,000 people in the UK alone.
    Symptoms can vary from person to person, but they can include; diarrhoea, stomach pains, fatigue, weight loss and anaemia just to name a few. This is way more than a ‘pooing’ disease. The symptoms make this disease so isolating, with so much stigma around it. When I was first diagnosed I just couldn’t leave the house, and was always panicking about where the nearest toilet would be if I did go out. As well as these symptoms, IBD can also impact joints and can cause eye inflammation.
    There are various methods of diagnosing inflammatory bowel diseases, one of the main methods being endoscopies. This involves a doctor using a flexible tube with a camera to examine the digestive system. X-Rays, MRIs, ultrasounds, blood and stool tests can also be used to make a diagnosis.
    Treatments vary, but the aim of them is to reduce inflammation in the gut and ultimately achieve remission. Once this is the case, maintenance medications are usually prescribed long term to try to prevent a relapse. Often in a flare, initially a weaning course of steroids are prescribed to reduce inflammation and allow the bowel to heal. Once symptoms calm, maintenance medication is started. In my case, I tried multiple maintenance medications with no luck and my symptoms became very steroid dependent which means now that I have adrenal insufficiency and have to take steroids for life. Fortunately, after years of trying different medications, I was approved funding for Humira and inject myself every fortnight which allowed me to achieve remission.
    Crohn’s disease turned my life upside down, but also turned the lives of my family upside down too as they were going through the pain, upset and struggle with me. My beautiful sister, Laura, ran the Great North Run last year for Crohn’s and Colitis UK after being there through everything I’d gone through, and I was so proud of her raising money for such a worthy cause, and one very close to our hearts.
    Crohn’s and Colitis Awareness Week is a chance to support the 300,000 sufferers, and millions more worldwide, as well as making these incurable, often invisible illnesses, visible. This week is the optimal opportunity to increase understanding of these conditions, and raise awareness of the debilitating nature of Inflammatory Bowel Disease.
    For more information visit: www.crohnsandcolitis.org.uk 
    Ella's blog can be found at: www.ellahollis.wordpress.com

    Tuesday, 4 December 2018


    Today is the International Day for People with Disabilities.

    I think so often when you have a disability you're faced with so many different barriers. 

    I can't work, go to University, access certain places because it doesn't have the access I need like ramps or the aisles are to narrow, I can't get nearly parking or a space reserved for blue badge holders (and the misuse of these spaces). The list could go on. 

    I'm also faced with personal barriers in terms of the unpredictable and relentless symptoms that I face each day as well as access to care and support. Today I found out that I can't access the specialist falls clinic because I'm too young; they only take referrals to people over the age of 65. It's like I'm being told I'm young to have falls yet today I've fallen twice and once yesterday. I've also been fighting for funding for a care package (carers) for years and the care agency I employ privately have openly said that if I was older my case would be dealt with differently and many people involved in my care from my care agency to community nurses all say I need more care. There are also barriers to specialist care; I'm currently waiting and asking to be referred to a specialist M.E. team but we don't have one locally; for a while I've wanted and feel I'd benefit from hydrotherapy but again this is not something our local hospital trust has (though hopefully when I attend UCLH's hypermobility team's exercise programme I can get some hydrotherapy sessions but it would require a 6hr drive to get there but I feel lucky to be under their care). I've also been waiting over a year now for specialist funding for a place in neuro rehab in Leeds and I'm in the middle of everyone passing the responsibility onto someone else to get the funding requested.

    There are also the financial barriers to having a disability - See Scope's 'Extra costs: The financial penalty of disability'. Yes you get a disability allowance (PIP or Personal Independence Payments) but it doesn't stretch as far as you think. Out of that come things like extra food money because I have to buy specialist free from foods because of allergies and intolerances, I go through extra laundry costs because of my incontinence, I have the cost to pay carers and if I could afford it I'd pay for more care than what I'm currently getting because its not enough and often I have to choose between leaving the house or get a wash and that shouldn't be the case, there's also cost of adaptive equipment that the NHS or social care don't provide and clothing  and in winter the higher energy bills because you I need the heating on more because the cold makes my symptoms worse, or there's the cost of taxi's because I can't drive or use public transport. "On average disabled people face extra costs of £570 a month related to their impairment or condition".

    There are social barriers. I'm mostly housebound so I don't get out much as I'd like to such as to be able to go to groups or see friends as often as I'd like. Letter writing is my way of connecting with the world outside. 

    I think a large part of the barriers I face is the invisibleness of my disability/illnesses. When you see me in my wheelchair or with my crutches you can see the wheelchair or the crutches but you don't see what's going on underneath and you don't see the unpredictable nature of my disability. One minute I can be fine; the next I'm unconscious having a seizure or double bent pain. You don't see that I struggle with my cognitive function or washing my hair or the energy it takes to simply get dressed each day.

    So what can be done to breakdown these barriers? Make buildings more accessible and for staff to be trained in supporting people with disbailties, produce information in alternative formats easier to obtain, support disabled people to access the care and support they need regardless of where they live or their age and less of the 'postcode lottery' when it comes to health and social care, for the public to be more aware of the barriers faced by people with disabilities, such as by not abusing disabled parking spaces and to see beyond the visibility of a person's disability/illness, for red cords in disable toilets not to be tied up (!) and for laws and legislations to be changed and made. (The list could go on!

    Despite the many barriers I and many other people with disability face I will not let it stop me or define me. I must simply fight on. There is more to me than my disability.


    A label can save a life

    Card from ©Stickman Communications

    There's been a lot in the news and on television lately about allergies and food labelling. 

    Having an allergy to milk myself and intolerances to several foods including wheat, gluten and soya I have to careful with what I eat an drink. Because of this I rarely eat out and I often stick to the drinks I know I can have but it's very restrictive. 


    Often when I ask for allergy information in cafés and restaurants staff either check for me or I'm given a book to check myself. Some of these books are easy to read and others are just so mind boggling to work out. 


    With the recent allergy talk especially watching BBC's Watchdog and Tonight's: Food Allergies: What's Really in You Food?and finding out that not all cafés and restaurants are giving out current information it worries me and it makes me feel even more restricted because I wonder if I can trust the information I'm getting especially as I've often found that one time I can find something suitable that I can eat and then the ingredients in the food will have changed making it unsuitable so every time I double check even familiar things incase the ingredients have been changed. 


    It's even more restrictive when you have multiple allergies and intolerances as one thing may be wheat free but it contains milk. I don't want to just stick to black coffee all the time and I should have a right to a choice when I eat and drink out and feel safe in the knowledge that I'm not going to fall ill.


    I've grown up with my milk allergy since birth so I've gotten to  know the hidden allergens, e.g. whey powder as an example and adapting recipes when cooking. But not all places when you eat out understand that something like whey powder or margarine is a milk product.


    It would be some much easier is menu's and food products had clear labelling saying "This products contains ______" and also staff being trained on knowing what in food and drink products or the allergy books where easier to read. Hopefully the law will change to make this compulsory and make it easier for allergy suffers to eat and drink safely and feel more able to eat and drink out.

    Sunday, 2 December 2018

    New glasses


    So these are my new specs that I though I'd show off to you. It took over an hour sat in Specsavers trying to find the right frames that a) I liked (I desperately wanted some Cath Kidston ones) and b) ones that would fit my think lenses due to my dodgy vision and thick prisms. 


    I picked up my new glasses Wednesday and putting them on it was like seeing in HD. I'm still keeping my old glasses with the smaller prism for days when my vision is better. It's also nice to have more than one pair of tinted lenses now. I've found having the tint so helpful to my photosensitivity (light sensitivity); it just calms everything down and makes light tolerable to my M.E. and headaches (though you will still see me indoors wearing my sunglasses).


    Due to my muscle and nerve weakness I have bad eyesight which has worsened since I became ill - I've permanently worn glasses since I was about 12. And a symptom of FND is double vision which I have quite badly. I also have Scotopic Sensitivity Syndrome also known as Irlens so I also have a pair of purple tinted lenses for reading.


    On my computer and phone thanks to assistive technology I also have tinted screens and reduced white point which makes life a lot easier.


    I might do a post on Scotopic Sensitivity. So many post ideas - you should see al my draft posts I have on the go!





    Saturday, 1 December 2018

    One Second Every Day: November 2018 - Week 4



    • Monday 26th November - Had a nice long lay in and really didn't want to/struggled get out of bed. Had a slow morning as I'm having a high fatigue day so I just took my time and rested as that's all I could do. I managed to get dressed early afternoon as I had a care call and needed to nip out and at 2.15pm Rosie one of my carers came. We took a quick trip to Tesco to get a key cut for my Uncle Mark so he can get into the house for emergencies as he's named on my CareLink. We then quickly nipped into Tesco for batteries for my medication alarm box and to post some letters and PostCrossing postcards. We then headed home and Rosie made me a drink as I'd only had the energy to get off the sofa to make breakfast that day. Rosie made her notes and headed off. In the evening I managed to make two squares which caught me up as I made 4 yesterday and then I headed to bed.
    • Tuesday 27th November - Had the usual struggle to get up and out of bed. Had a rest morning/early afternoon in my pj's and then I got washed and dressed. I had a little recharge but had jobs to do so got a snack and then cleaned Flop out and did the dishwasher. I was tired out by this point so decided to do something low-key and did some of my crochet. I've made 2 squares today and sewn on 6 so making progress. I've been a bit wobbly on my legs today and had three falls. I'm now curled up in bed with a herbal tea hoping to get off to sleep soon as I have Bluebird at 11am so no lay in for me as I've normally been getting up round 10/11am so my aim is to be up by 9.30am (10am at the latest). All I really need to do is get up, get my meds for the day sorted, get breakfast and get dressed but when you're chronically ill all of this takes 10x longer and takes more energy/effort.
    • Wednesday 28th November - Managed to get up in time for my carer to come at 11am. It was Rosie today one of my favourite carers (though I love everyone in my care team). We had a good chat and I got some stuff off my mind which helped (and she braided my hair). I was feeling a bit tired but we managed to pick up my glasses from Specsavers and then we went for coffee for half an hour as it was busy in the pottery painting café and then we went back to the pottery painting place. I've been wanting to go pottery painting to make a few Christmas gifts and with my hairdressers appointment being canceled today it gave us the perfect opportunity. It was nice and relaxing. Painting done we headed home and I had some lunch. I fainted but thankfully Rosie was around. She left me on the sofa with everything around me. I've had a myoclonic seizure episode for about an hour and a half so I just rested on the sofa. I took fall down the stairs; I'm still unsure whether I blackout again of had a seizure but CareLink set off and the lady stayed on the line whilst I came round and crawled to the sofa where I could get some pain relief as my elbow and shoulder had subluxed/dislocated (not sure which). I'm now just waiting for Dad to come home. My shoulder is still painful as is my head from the stair fall but luckily I was bumshuffling down the stairs so it didn't do too much damage. I just rested for the rest of the evening and watched TV and did a bit more of my crochet.
    • Thursday 29th November - Went to my friend Abi's in the afternoon. To cut a long story short I had several episodes of seizures each getting longer in length which lead to Abi calling 111 for advice. A fast response car came followed by an ambulance to take me to A&E. Paramedics didn't follow my neurologist's care plan to give me IV diazepam so I went to A&E still having seizures. Several hours later I was still having seizures. I got extremely poor "care" in A&E including my arm being restrained to get a BP and very ignorant knowledge from staff about FND/non-epileptic seizures and the complications of my hypermobility (e.g. seizures equal dislocations). When Dad arrived the Dr took him into a side room away from me and was told I was told that I was faking my seizures; that I was attention seeking and needed psychiatric help and dismissed my Dad when he tried to explain FND to him so Dad's going to make a complaint. I got home after midnight feeling very out of it and exhausted. Abi stayed with me the whole time in A&E despite that fact I was unconscious. I can't take her enough for her being there for me.
    • Friday 30th November - I wasn't able to have much of a lay in as I had a hospital appointment. So I got up and got breakfasted, then washed (to get rid of the hospital yuck as I was too tired last night) and dressed and did my make-up then packed my bag and waited for patient transport who arrived just as I was on the phone to see where they was. It was then off to orthotics to get my knee brace fitted. The clinician I was seeing was running behind schedule so I called TASL to let them know and the receptionist made me a coffee and we chatted and I listed to some music (I'm in love with my wireless headphones). Unfortunately the knee brace that was ordered for me wasn't suitable - the clinician I saw was VERY knowledgeable of HSD/EDS and asked me how hypermobile my hands where which they are alongside the spasms so the pull on knee brace that was ordered wasn't suitable so he's ordered me a velcro wrap-around knee brace that will be easier to put on and off. Appointment over I was once again on the phone to TASL to let them know I was ready to go home when the crew turned up. Once home I rested and then got something to eat. Then when Dad got home we headed off out to the cinema to see 'The Crimes of Grindelwald'. It was a really good film, a sequel to 'Fantastic Beasts and Where to Find Them' and at the end it hinted to there being another film to follow. Home, snack, meds and then bed.

    Gratitude List...
    • My friend Abi
    • My Dad
    • Rosie (this weeks carer)
    • Spending time with my Dad

    GUEST POST by Jonathan for Carer's Week 2019

    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 life...