Some of my favourite YouTubers

I love watching YouTube; partly because I struggle with my concentration so films or even an hour long episode of my favourite boxset can be difficult to follow. Plus I love the friendliness of YouTube and the wide variety of video topics.

So below is a list of some of my favourite YouTubers:

Becca at Bex's Life

Bex, or Becca, I got to now from her YouTube channel and we actually got to meet one another when I was in hospital in Leeds as Becca was admitted whilst I was there too. Becca like me has severe M.E but what I love about her channel is that Becca doesn't just vlog about her health. Becca makes videos on a whole host of other things in her life; I especially love Becca's hair tutorials and her BSL/SSE videos.

Jessica Kellgren-Fozard

Jessica was probably the first YouTuber that got me into watching YouTube. She mostly covers different disability topics with the occasional vintage themed video, new house tour, disability issues like the plastic straw ban, or the importance of having CC on videos, BSL videos or speaking about her Quaker faith or LGBT+ topics. Jessica is always so positive and lighthearted whatever the video is about. She posts twice a week and she's made a career out of her YouTube channel and what I also love is the fact that she subtitles all of her videos.

Tania at When Tania Talks

Tania's vlogging style is in the form of an account of her week so she touches on her day to day life and what that involves including her disabilities, being a wheelchair user, being a parent, her interest in baby wearing and much more. I like Tania's videos as they're different to watch. I also really like her blog too.

Jenny Cole

Like Tania Jenny does a lot of videos accounting her week. As well as these weekly vlogs Jenny has done some other videos such as Vlogmas and raising awareness of Ehlers-Danlos Syndrome and mental health as well as some travel videos and her love of Disney. Like Tania Jenny also has a blog which I enjoy reading. Jenny and  I also write to each other as a pen pals.

UK FND Awareness Day: Living with a misunderstood illness

Today is UK FND* Awareness Day so I'm trying to shed some light on this, an illness that I have which over the years I have found to be poorly understood even by care professionals.

There are many many different symptoms to FND as it affects the whole brain and nervous system in the body. As a result it affects each person so uniquely, though there are some key symptoms but even these vary from person-to-person. FND is also an ever changing and fluctuating illness and it is highly unpredictable. When I've spoken to others with FND they have found like me that their FND changes over time just like I have found.

How I explain FND

How my FND started

I developed FND at University; I was doing well with my studies but I started to experience some symptoms which I just put down to being overworked but then all of a sudden I started to have non-epileptic seizures. Since then I live with a multitude of FND symptoms which severely restrict my life; not only affecting my physically but socially and emotionally too.

Invisibility

FND is an invisible illness both externally and internally an which adds to how misunderstood the condition is. On the outside I look fine - unless you see me mid non-epileptic seizure or sat in a wheelchair, but most of the time I 'look fine' when I feel far from it. Internally I look fine too as there is no real tests for FND. Blood tests and genetic screenings come back fine as do things like CT or MRI brain scans. 

However research is finding that on an fMRI scan FND does show up*. There is also something called the 'Hoover's Sign' which can can be used when someone has functional weakness/paralysis - this test was used on me when I was diagnosed with FND.

Living day to day

Living day to day with a misunderstood illness can be difficult sometimes. Like for example I may get asked what is wrong with my legs and often people find it hard to understand that my legs are fine but it's my brain that is the problem. Or when I'm asked to explain what my illness is and trying to explain what FND is (see my YouTube video above).

The daily challenges of living with FND are difficult to due to the unpredictability of my illness as the symptoms vary so much and every day is different. This also makes it hard for other people to understand as I may be having on of my better days and using one type of mobility aid one time and the next time I see them I might have different symptoms and be using a different mobility aid.

The main challenges

I would say that the main challenges of having a misunderstood illness like FND is that is can be hard for professionals to understand what to do with regards to dealing with my illness.

As well as that I've had some awful times with care professionals misunderstand what is FND is. As a result at times they have made very wrong assumptions; often based on out of date knowledge which has led to me receiving poor care and at times mistreatment. For example I have been assumed to be faking, manipulative or feigning, attention and drug seeking, or my symptoms being factitious.

References & Helpful Links

* FND on an fMRI scan

• FND Hope
• FND Action

My Daily Plan

So, if you've read previous blog posts you may have read references to my 'Daily Plan' a few times so I thought that it was about time that I shared with you what exactly this Daily Plan is.

So this is roughly the Daily Plan that I still follow now I'm home. I've ever so slightly altered as being at home is very different to being in hospital, for example the time we eat tea in the evening isn't always the same time. I also alter it for any appointments I may have and need time to recover from. From when I was in hospital I learnt how to better manage my symptoms so again if I'm not having a great day like I would have done in hospital I reduce or alter my day a little.

Having the routine really has helped me manage my disabilities as it gives my body stability and predictability so I'm not always on the go and it helps with activity management and keeping my energy levels in check (well as much as in check as possible).

As you can see mornings and late afternoons and evenings are still a struggle for me so I have more activity/rest periods then. My energy peak is between 1pm and 3pm but I can't continuously be active for 2 hours so I have mini breaks after every 20/30 minuets to help me keep going. I use the timer on my watch or my phone to ensure that I don't over-do myself which again is something that I learnt to do whilst in hospital.

When I was in hospital I put my daily plan on my iPad with alerts at the start of each new event (as all my devices are Apple the sync across all my devices which I love and is so helpful). My Occupational Therapist loved that I'd digitalised my Daily Plan and had colour coded it. Having my Daily Plan on my calendar is so helpful as I can easily alter it for times like when I have appointments plus the reminders prompts me to know what I'm meant to be doing which is so helpful for my memory problems.

Brain Awareness Week - Living with memory loss

Living with memory loss and cognitive difficulties is especially challenging to live with. My memory loss affects my short-term memory and is exacerbated by other symptoms of my disabilities such as 'brain fog', fatigue, migraine or following a non epileptic seizure.

Memory loss is a lot more than forgetting where you put your keys or mobile phone down (though that does happen a lot). It can be quite distressing or frustrating at times. Like going into a room several time desperately trying to remember what is is you are wanting sometimes getting distressed because you simply can't remember what you are after, or being unable to distinguish between 5 minutes and five hours and forgetting what you had done the day before. I try lots of things like having sticky notes written by myself or others but even then I can read the message and forget what I read 5 minutes later.

Sometimes people can get frustrated with my memory loss as they have to repeat things to me a lot which can be difficult sometimes as I genuinely cannot remember what they had told me verbally.

What can help

• Make notes; this could be hand written notes or voice memos - usually your phone or smart watch has an inbuilt voice memo app or you can download one.
• Having a wipe board up somewhere to write down the day, date, appointments and reminders.
• Try and get in the habit of putting certain things like you keys, mobile phone, bag, medication etc in the same place all the time. I find repletion help as it eventually goes into you mid-term memory then eventually your long term-memory (if it is your short-term memory that you struggle with).
• Letting others know important information, this could be a family member, friend or carer so they can remember for you. If you have appointments and depending on who the appointment is with you could ask them to send you a text or email prior to your appointment to remind you of the appointment that will be happening the following day or in a few hours time.
• Take someone with you to appoinments and ask them to take notes. Also ask the clinician you are seeing if they could write down some important notes for you. If you have cognitive difficulties with prearranged consent you may be allowed to also record the appointment.
• If people around you get funs treated with you memory loss try to help them understand. We also find in our house making light of my memory loss helps it feel less stressful and frustrating for everyone.
• Use the reminders app, and alarms on your phone or smart watch.
• Colour-code what needs to be done and use the same colour-coding all the time as this will help you associate certain colours with different things. So you could have purple for appointments, green for meals, dark blue for important reminders and light blue for less important reminders all as examples; whatever things you have on your diary and needs to be done.
• Set up the calendar on your laptop, phone, tablet or smart watch -you could have a wall calendar but I prefer electronic calendars as I can edit them if things changes and it looks less messy if things need deleting. Sometimes depending on your devices they may sync across all devices; this is why I have all Apple products which is my preferred make of electronics. On my calendar I have my Daily Plan even though I know it by now but I also put up appointments, deliveries, certain to-do list items, incoming and out-going money etc which is all colour-coded.
• Alternatively or alongside your calendar you may also want to have a planner/Filofax or bullet journal, especially for specific things. I keep a bullet journal to help me plan and organise my blog and YouTube channel.
• Try not to get annoyed with yourself if you forget something; I know this is easier said than done as I often get annoyed with myself for forgetting things especially appointments.

My advice to someone newly diagnosed

If you are newly diagnosed with an illness here is some advice I would like to offer you.

Sometimes getting a new diagnosis can be a bit of a shock and it can be difficult to get your head around it. Other times you feel that 'click' moment where everything makes senses or because you've been trying to get that diagnosis confirmed for some time. Or you may feel like a weight has been lifted after not knowing what has been causing your 'medically unexplained' symptoms for so long. Whatever you feel - grief, fear, denial, happiness, hopeful, surprised - your feels are valid and there is no right or wrong way to feel.

Sometimes you may have already done some research into what illness you could possibly have before actually seeing a doctor, or you may have had some test results in the lead up to your diagnosis that my hint as to what illness you may have. Other times you can receive a diagnosis that you've never heard of before.

Here is some of my advice to you...

Ask your doctor and take notes

When you receive a diagnosis it's important to understand it. Make the most of your time with your doctor to ask questions such as what treatments are available, are there any lifestyle changes you can make, are there any referrals they can make to pass your case onto such as a specialist nurse that can oversee your care needs and to offer support. There may be some more specific questions directed towards particular illnesses, for example is this an illness that is temporary, relapsing and remitting/fluctuating or degenerative - some of these things may be difficult for your doctor to answer at first. You may want to know how or why you have this illness, such as is it genetic/hereditary? You may also want to understand how this illness works within your body - for example with me my FND is about the body's messaging system not working as it should.

Personally I find it important to take notes or if you have cognitive difficulties you can ask if you can record the appointment (usually this requires prior permission to do so). Notes can help as you can refer back to them or use them later if needed.

Also write down the name of the condition you have been diagnosed with especially if it has a name that is difficult to pronounce as you can show this to others when needed.

Also ask if there are any particular charities, organisations or helplines you can turn. As well ask your doctor if they have any information leaflets that you can take away to read or any you can obtain to understand more about the illness as well as how manage and live well with this new illness. For example when I began having non-epileptic seizures I was given a leaflet on safety with seizures which provided me with information and advice. 

© Hannah Ensor

Get information from reputable sources

It can be really easy to go on an internet search about your new diagnosis and find all sorts of information and sometimes certain sites aren't as credible as others.

My advice is to go to the credible sites, especially sites lead by organisations or charities that are there for people with a particular diagnosis. So for example with my HSD/hEDS diagnosis the sites that I'd go to for information would be the EDS Support UK, the EDS Society and the Hypermobility Syndromes Association (HMSA). Websites like this can give you information about the illness, symptoms management, living well and managing the illness, support for family and carers, current research, treatments etc.

Hannah Ensor, Chair of the Board of Trustees at the HMSA also has a whole host of well researched resources available Stickman Communications. Most charities and organisations will have information which you can access; I have a page here with a list of some organisations which you can check out (though this page isn't exhaustive; they only relate to my illnesses) but you can research online for charities and organisations that cover your illness and you doctor or nurse specialist may be able to point you in the direction of some organisations and charities that may be of help to you.

Become a member

Leading on from the previous section one of the biggest things I would suggest to someone newly diagnosed is to become a member of charities and organisations affiliated with your new diagnosis. 

Becoming a member gives you access to a community of others with this illness, for example online forums, support groups for both individuals but also their family and carers. You may also get free information packs, or access to additional information sources such as webinars. You may also get access to their help/advice line and receive magazines or newsletters which give you information such as articles written by others with the condition or professionals working in that field, latest research and opportunities to participate in research, fundraising, what is being done to raise awareness and much more. Charities and organisations may also be putting campaigns on such as for M.E Awareness Month and they be asking member to help participate in the campaign. There may be access to other helpful things such as for example I'm a member of the Bladder and Bowel Community and I received a free 'Can't Wait' card which explains my urgent need to use a toilet and their home delivery service.

I'm a member of quite a few charities and organisations and I can't express enough how being a member of different charities and organisations has helped me live with and manage my illness as well as connect with others, participate in some of their work they do, write articles for their magazine and much more.

March's Monthly Make - Present Birthday Card

I first made this card in last year's Vlogmas Series, but I made it as a Christmas card but you can just as easily make it as a birthday card.

Difficulty Level - ★ ☆ ☆ ☆

What you will need

• Blank card and envelope
• Happy Birthday sentiment - this could be a sticker, die cut, stamp or even hand written
• Patterned paper/card
• Coordinating ribbon that matches the paper/card
• Scissors or a paper trimmer
• Quick drying clear craft glue
• 3D double sided foam sticky pads (rectangle or square)
• Ruler
• Pencil

Step 1

Put the sentiment onto your card

Step 2

With a ruler work out what size your present will be (ensuring you leave enough room for the bow at the top.

Using the measurements you've just worked out mark this out on your patterned paper/card and cut it out.

 
 

Step 3

On the front of the paper/card that you have just cut out, draw a cross marking out where you will be gluing your ribbon. 

Step 4

Work out how much ribbon you will need to cover the cross ensuring that you leave enough to tuck underneath.

Step 5

Glue along the cross and stick on your ribbon. Once tacky dry turn over and fold and glue the ribbon underneath. You may need to hold each tab in place until the glue goes tacky and hold the ribbon in place.

 

Step 6

Place the sticky pads over the folds of ribbon on the back of the paper/card - I've found that this helps to keep the ribbon in place as opposed to placing the sticky pads in the corners.

Peel off the back of the sticky pad and stick in onto your card leaving enough room for your bow.

 

Step 7

Make a bow with the ribbon and glue this to put a bow on the top of your present.

 

Personalise it

What you could do is persons the card in a free space a the top of the card by adding a name or a number.

You are now finished! 

All you need to do is write in is and send it to a friend to wish them a Happy Birthday!

Just a note...

If you have ever given one of my 'Monthly Makes' a go please send in a picture of what you have made as I would love to see your creations. Just email your creation to hello@agirlcallednaomi.com

International Wheelchair Day

The 1st March is International Wheelchair Day and it was first stated in 2008. 
It is an annual event which provides and opportunity for wheelchair users, like myself, celebrate the positive impact that having a wheelchair helps us in our day-to day lives.

The importance of International Wheelchair Day

International Wheelchair Day is important as it gives wheelchair users an opportunity to share how their wheelchair helps them and gives them back their independence and improves their quality of life.

This helps to reduce the stigma and stereotypes associated with wheelchairs and wheelchair users.

The day also provides an opportunity to highlight the difficulties and barriers wheelchair users may face, from gaining access to a suitable wheelchair for their needs to difficultly with accessibility such as on public transport, at concerts or to buildings, even access to education and employment.

"According to the WHO (World Health Organisation) there could be as many as 100 million people in the world who need a wheelchair but as few as 5 to 15% of them have access to a suitable chair. International wheelchair day provides the perfect opportunity to discuss this major issue and find solutions." 

The aim of International Wheelchair Day

There are three main aims:

1. To allow wheelchair users to celebrate the positive impact their wheelchair has on their life.

1. To celebrate to work of those who provide wheelchairs to individuals and support wheelchair users to give them back their independence as well as those that strive to make the world more accessible for wheelchair users.

1. To acknowledge the fact that there are millions of people all over the world that need but don't have access to a wheelchair or one the suitably meets their needs.

Who uses a wheelchair?

According to the World Health Organisation and estimated 1% of the world's population, which is around 65 million people need a wheelchair.

There are a multitude of reasons as to why a person may need a wheelchair and this will vary from person-to-person depending on their needs and health condition/disability and the amount of mobility they have. 

Me and My Wheelchair...

I'm a part-time or ambulatory wheelchair user, I have some mobility but I don't have good balance especially outdoors and even with my crutches I can only manage short distances and it's extremely tiring and painful and it takes a lot of concentration for me to be able to walk.

My wheelchair keeps me safe, it's stops me from falling or passing out (which can happen if I'm upright for too long or when I sit up/stand). It helps me to ease and manage my symptoms such my pain and fatigue levels. Since getting my wheelchair it has greatly improved my independence, safety and freedom and without it I wouldn't be able to leave to house.

When I was at University I played some wheelchair sports (shown in the photo).

The challenges of being a wheelchair user & wheelchair accessibility

Since becoming a wheelchair user I have faced many challenges.

Many times I have found buildings inaccessible. I don't use public transport but things like parking can be a nightmare even when you're a holder of a Blue Badge (UK accessible parking permit). 

Far too often I see accessible parking spaces being misused and many people who misuse these spaces don't realise to importance of the spaces such as needing the extra the room to get my wheelchair out of the boot and bring it next to the passenger door for me to transfer myself.

Kate Stanforth

People assume sometimes have preconceived perceptions and stereotypes around wheelchairs and wheelchair users such as we cannot walk at all so sometimes people don't understand that you can still be mobile but need a wheelchair also. Kate Stanforth, a dancer, disability campaigner, model and ambulatory wheelchair user has done a lot to show this, for example in her modelling shoot with George clothing.

As well as access to buildings it's then the building itself: service desks or card machines too high or clothes racks too close together etc.

Alongside the theme of building there is also a distinct lack of accessible housing, especially for younger disabled people and this problem isn't just a local issue but I've found that many young wheelchair users find it difficult to find suitable properties.

Sometimes when I'm out I also find that people become a bit blind to me and will walk in front of me, or they will speak to the person with me rather than to me.

I still feel that wheelchair access and attitudes, even in the UK still has a way to go. I understand that listed buildings can't be made fully wheelchair accessible  (which is a shame as I love visiting new places). Shops could also be made wheelchair friendly, I've lost count the amount of time I've found displays blocking aisles - I mean you would think that shopping trollies have the get past, so why not think of buggies and wheelchairs too? Or there is now accessible changing room or accessible toilet/Changing Places.

Finally even with the NHS, to get a wheelchair you have to jump through many hoops and accept what they are able to provide which is often very limited. As a result many people who need wheelchairs will fundraise and/or purchase a custom wheelchair for to get a wheelchair suitable for their needs. The cost of a custom wheelchair can go into thousands of pounds I feel this is wrong. Wheelchairs are not a fashion accessory but a necessary means for a person to get around independently, sure I know they're not cheap to make but I don't feel that wheelchairs should be as expensive as they currently are.