Monday 28 January 2019

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.

Thursday 24 January 2019

#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.


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)

Tuesday 15 January 2019

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. 

Monday 14 January 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...

CLÄ’ 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!...

Sunday 13 January 2019

Disability representation in retail
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'

Monday 7 January 2019

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.


Saturday 5 January 2019

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.]

Friday 4 January 2019

2018 PostCrossing Stats

[Image description: first image is a pie chart of all the PostCrossing postcards I sent in 2018 with a colour for each country. Each country is labeled with the number of postcards I sent to. Germany, then Russia then USA are my top 3. The second picture is a pie chart of all the PostCrossing postcards I received in 2018 with a colour for each country. Each country is labeled with the number of postcards I got postcards from. Germany, Russia and the USA are the top three again.]