Hi there, I’m so glad this video was helpful to you and has given you hope for hopefully a better life once your PA starts and you start to build up that professional relationship with your PA. Diane who’s in this video has been with me over 3 years now, almost 4 probably (!) and we get on so so well and we have a good routine going and she’s very attuned to my needs and she just loves her job. It will be hard at first for both you and your PA but the great thing about PAs is you have someone who is supporting you constantly so you see each other regularly so you have that time to establish a routine and relationship as opposed to agency carers. There’s such a shortage of PAs; I’m really struggling to find extra PAs to join my team so I’m using agency carers to fill the gaps so I know the difference in care. I made this video more to highlight and raise awareness of just the variety in what a PA can do to support someone and enable them to live out their life as well as the relationship that you build up with your PA. I really appreciate your comment it was lovely to read and all the best, Naomi

thank you - would you like to see more DIML vlogs like this when I’m well enough to film them?

thank you and thanks for the card x

thanks ☺️

I love fairy lights!

thanks, I hope you get your bungalow one day

thank you yes it is lovely to have a little dedicated craft space

That’s great! I’m glad you loved my video and you’re considering becoming a PA it really is such a rewarding and fun job. My PAs love coming to work and we have a great working relationship. There’s also such a shortage of PAs; I’ve been desperately looking for more PAs for a long time but there’s just so few people out there. I’m sure you’ll be an asset to the profession!

Thank you so much!

thank you, it’s my first and only fashion video.

Could you please expand on what you mean by this please? Naomi

Oh no, I’m really sorry to hear that. I’ve never heard of that happening before. I hope you’re recovering well.

Hi Milly, thank you so much for your lovely comment what you’ve written is so so kind and has really made my day. It takes a lot for me to open up about FND because people assume it’s all in our head rather than it being a neurological illness. But on the other hand I firmly believe that it’s only through talking about it and sharing that awareness of FND and the true nature of the condition can be raised. Hopefully the more FND is talked about the more people will understand it. Also thank you for watching my video. Naomi

@@AGirlCalledNaomi I agree with you completely and believe the same thing! The sigma and prejudice against sufferers of FND is appalling, it’s like the poor cousin of disability nobody wants, yet for so many people it’s the factual reality of daily life. The part you are bravely playing is addressing this stigma and championing so many hidden suffers, is amazing and inspiring, I hope you feel some pride and achievement in that! My career was (I say was, as 2 years ago I gave it up, unable to cope) in communication, PR and brand management, I feel more inspired today than every before to join you and do what I can to help address the stigma, bring true awareness and promote education of this disorder. It’s time the world understood the real FND, not the heavy Freudian misconceptions we all still fight to lift off us everyday! You are an inspiring person Naomi, keep going one moment at a time and rest well! Xx

Thank you Milly. I want to be brave enough to talk more about FND especially after the experiences I’ve had from health care professionals. Do you have any suggestions for videos I could make on the topic of FND?

@@AGirlCalledNaomi I’ve just liked your Instagram page, so will send you a message 🙂 I would always say, talk about things that you feel passionate about and want others to understand about FND, maybe tackle some of the preconceptions people have? Sometimes it’s really good to just ask questions too, and communicate what you’ve learnt about some of the questions you once had, maybe when you were diagnosed for example 😊 I think you are doing a fantastic job of talking about FND and ME!

@@millymay0025 thank you so much that’s really kind of you. I’ll take that advice on board and think how I can make a video about FND as I know I don’t have many and haven’t done any for a while.

Hi there, I’m so glad to hear that! Naomi :)

Hi Megan. I’m really sorry for my very delayed reply. Once you’ve built the base you need to stop increasing your stitches and just take out your stitch marker and work a single stitch in each space going round and round building up the sides of your can cosy to your desired hight. Hope that helps and works for you. Please do reply if you get stuck and I will respond much much quicker next time! Naomi

Hi, a good question; not one I'd given much thought as I've never been interested in having children myself. I've always preferred to foster/adopt. This was even way before I ever became unwell so the topic has never made me think much. I do have fertility issues but the cause is unknown. I do know of one person who has severe M.E who has a child Jessica Taylor-Bearman (she's written two books on her story of living with the condition). On reading your comment I did some research and there was some mixed results. I always try to go for reputable sources of information so I've found this leaflet from the M.E Association (I'm not sure if you're in the UK or not) but it's not too long like the other link I was going to include: meassociation.org.uk/wp-content/uploads/pregnancy.pdf - Hope I have been of some help. Please do keep the conversation going it is so important to help raise awareness and understanding. Naomi EDIT: I would guess that like with any condition things vary depending on how the illness affects you so I would guess and from the little bit of research that I did that fertility both in getting pregnant (was difficult for men and women with severe M.E) and carrying a baby for women was more difficult for those with the more severe spectrum end of M.E/CFS.

@@AGirlCalledNaomi Thanks for your perspective on this issue. I did know someone with ME that believe fertility issue is related with the condition. I am from the UK and just round the corner to yours actually. I've not heard complaints from Men with ME regarding their fertility, but I do think as you are an advocate for ME, it's an important area of research you can put forward to the ME associations to consider exploring. I'm on your facebook page aswell and keeping up with your posts. kudos

Hi there. I’m so glad that this video was so helpful to you. Another positive I feel is that unlike many disability products the FlexyFoot ferrules are a fairly good price especially for something designed so well. I hope that they work out better for you. Since I started using FlexyFoot ferrules I’m more steady so I feel more confident when I’m walking with my crutches. You’ll have to let me know how you find them after you’ve started using them. Naomi

Thank you its very helpfool . You a star !

Hi Susanna, thank you very much for your kind words. Naomi

Hi Susanna, it’s lovely to hear from you. Yes I did do an article for the MEA. Thank you for checking my channel out, any support for it is much appreciated. It’s my little project, I do disability videos but also craft tutorials, makeup, product and book reviews etc - basically me summed up into a little RU-vid channel. I used to post regularly but due to my health I had to reduce to just post when I’m able to. Unfortunately I’m not on Facebook to be able to reconnect back with you.

Hi Hannah, thank you so much for your comment and subscription. I love your channel too and you've helped me find some amazing books (plus the ones you've put up on your Good Reads). You've also helped me enjoy poetry. My current reading book is 163 Days which I'm really enjoying and I'm going to review it on my channel once I've finished it. I do find reading difficult but the format of 163 Days makes it a really easy book to read. I hope you are as well as possible. Naomi x

You're more than welcome and I'm glad the information was of help - I aim to help people know what products are out there.

Thank you Fuschia! This was my first attempt, it was a bit wonky but I always feel that it looks more handmade that way. - Do you think it would be good of I did a video tutorial on how to make one of these? I've had a lot of views on this video which is so lovely.

You’re welcome. I’d totally recommend them. After using them for a while now I can notice the difference and how much better and more stable I am with the Flexy Foot ferrules.

Hi Emma. Thank you so much for your comment, what you’ve written means a lot as when I was editing I did feel so vulnerable seeing things like needing support to get a bath etc. However this is the reality of what having severe M.E is like and I'm glad that you feel that it's helped raise a little bi of awareness into how M.E can affect people like myself. I kept this video focused on how Diane supports and enables me, so when we went out for a coffee what I didn't show is how that trip out left me feeling utterly crashed that evening. I also like in this video how the relationship I have with Diane shines through like how Diane jokes about how I always over scrub my face or our conversation in the car about liking egg mayo. When you spend so much time with someone like a PA it’s so important that there’s a positive professional working relationship and Diane and I get on so well and can have a laugh but at the same time there’s a seriousness such as when I become unwell and I need Diane to step in and take over.

You're welcome, I'm glad you liked my first book review and you've found a new book to try. I really did love this book once I got into it. The sequel to this book is 'The boy of the bridge' so I've got that on my list of books to listen to. Let me know your thoughts on this book once you've read/listened to it as I've love to hear your thoughts and take on the book.

Hi Sarah, thank your comment, what you've written is such appreciated. I really hope you do get your PIP and I'm happy to offer any advice or support if you wish. My email is hello@agirlcallednaomi.com if you wish to contact me. PIP defiantly helps to cover the extra costs as being disabled/chronically ill does get quite expensive and before I got my care package it helped me to pay for care and now it helps me pay for my care contribution payment along with everything else.

@@AGirlCalledNaomi I heard this week I got my pip for 3 years at higher rate mobility and higher rate daily living. I was so overwhelmed as I'd heard such horror stories of people having to fight for a year or two to get anything. Now I just need to think best how to spend it. As I'm self employed I think for the moment I'm going to use it so I can allow myself hours / days off.

@@sarahgibbons9737 Hi Sarah, I'm really glad that you've been awarded PIP it really does help to cover the extra costs of having a chronic illness/disability and it's there for people to use however they wish in whatever way will help and support their needs best as everyone is unique even two people with the same diagnosis. I'm also glad that you didn't incur the difficulties a lot of people do face to get PIP especially when you have lesser understood diagnosis' like M.E/CFS.

I’ll be sure to let Diane know :) when editing I felt quite vulnerable showing that I need help with things like getting a bath but I wanted to help raise awareness of how important people like Diane are. PA’s and carers and unpaid carers too are not recognised for the wonderful work they do to change and enable people’s lives. I definitely think both paid and unpaid carers deserve to earn more for what they do. I find it Absurd that there’s people on a supermarket checkout earning more especially when it comes to carers allowance which when working out their hourly rate income is less than minimum wage! I know this video was much requested and even chased up asking me when I would be sharing it so I pushed myself to film, edit, upload and add subtitles to get it shared on time so I’m now having a quiet weekend as it was a massive challenge to do all that. I also have another video in the making to share how challenging it is to be a RU-vidr with M.E and other illnesses just so people understand that I love my channel but equally it is so hard especially when people are chasing me up asking when I’ll be sharing certain videos.

Thanks so much Chlo

Hi there, thank you for sharing your thoughts on the topic of this video. I haven't forgotten about the video on what I get up to with my PA and I will try and get round to filming it when I can. I'm really glad to hear that it's a video you're looking forward to watching. Things have just been a bit challenging for me lately as my health hasn't been too great and I've been waiting and trying to get a date for my surgery. so I've just been using videos I made a while back. I hope to be well enough to film soon but as I'm sure that as someone who also has chronic health issues you can relate to how challenging it is to run a RU-vid channel. I love my channel but it takes up a lot of my time and energy to film, edit the footage, upload it to RU-vid then add subtitles also which I do to increase accessibility. I haven't forgotten about the PA vlog and I hope to film it when I'm able to.

Hi there, just an update for you. I wanted to film my PA vlog when there was some variety to show the wide range of ways in which my PA supports me so as I have a hospital appointment this week I've started my PA vlog which I'm filming over the course of a week so I can show the many different ways my PA supports me.

If you make this card I'd love to see a photo of your creation and how you've adapted the card's design. You can share a photo over on IG - @agirlcallednaomi_blog or you can email me a photo - hello@agirlcallednaomi.com. Let me know if you're happy for me to share the photo plus with your name or if you'd prefer to be anonymous.

You're welcome. It seemed a bit much to talk about all my illnesses and how each one affects me so I just focussed on M.E for this video as I think that one can be the hardest at Christmas due to how little energy I have and the hypersensitivity though obviously dealing with a seizure and as a result badly dislocating a few joints on Christmas Day also isn't that much fun either! But yes as I type I'm reaching for my noise cancelling ear plugs as my some of my stepmum's family have just arrived and I'm tired and finding the noise a bit painful so I'm staying upstairs (plus I'm terrified of covid). But yes totally, people don't understand how EVERYTHING uses energy even just travelling in a car or holding a conversation but also how M.E has many other aspects and symptoms especially when you have severe M.E.

I totally totally agree with you! It's losing it's meaning first like you said during the pandemic people where just buying them as they didn't want to wear a mask and now people like the design of them so companies are designing and selling their versions of a sunflower lanyard. I feel it all could have been stopped if Hidden Disabilities and places like supermarkets who offer free lanyards asked for evidence of disability when people where purchasing them plus they're so cheap it to buy it doesn't put off people who want to evade wearing a mask. I made this video originally to highlight the real reason behind the lanyards but now it's loosing it's meaning. I still find in some places that they understand they're for hidden disabilities and you would have thought transport staff would be aware that they highlight hidden disabilities - that's the point of them it shouldn't be vice versa. Also thank you for watching some of my videos and commenting. It's nice to hear from people who watch my videos.

Thank you. I loved having red hair but it was difficult to keep up with colouring it (me and my PA have been searching for hairdressers today as I haven't had it cut in 2 years!) but yes I do love having curled hair too. Again my fringe was a nightmare to maintain so that's grown out too but thank you for you comments on how I look in this video and thank you for checking my videos out and for making the effort to leave a comment as it's lovely to hear from people who are checking my videos out.

Hi there, yes I can totally relate to the emotionally difficulty of realising that you're not coping on your own and/or with the support of family and friends. I've have a few requests for the vlog so I'll be doing that. Your suggestion for the other video is a great idea so thank you as I'm always after suggestions and ideas. With my health as much as I love my RU-vid channel I may do your suggestion initially as a blog post (I did sort of talk about my journey from first needing care to where I am now in this video but I can explain more and in order in my blog post) and then one day I may make it into a video also as I know so people find RU-vid more accessible but I do have an accessibility widget on my blog. My blog is www.agirlcallednaomi.com and if you're on Instagram my account is @agirlcallednaomi_blog.

@@AGirlCalledNaomi Oh no sorry I meant the process of getting care as in how to do about accessing it, like how to apply. But I really appreciate you sharing your blog because I would like to take a look. Also it is true that I definitely find RU-vid easier. Great to hear you will be trying the vlog! It will be so interesting to see! Thanks!

@@mayflower2158 Hi, oh okay thanks for clarifying - it's helpful to know what information you wanted and hopefully I can help you out. I'll still plan to do the blog and video as it's a good suggestion of yours. Thank you for checking out my blog and it's good to know that people like yourself find my RU-vid channel more accessible than my blog. I've been blogging for a few years so now I know that I may look back on my blog posts and make some of those old blog posts into videos for my channel - what do you think and looking at my blog have you seen any particular blog posts that you'd like me to make as a video? As well as my blog you can check out my Instagram @agirlcallednaomi_blog as I have other and share other videos there too especially shorter videos.

@@AGirlCalledNaomi Sure! I definitely will! And I'll be more than happy to let you know. It's so lovely that you care about your viewers thoughts & opinions & take time to respond to them fully. So nice! 🥰

@@mayflower2158 Hi there, I've made a little video about how I got care both privately and also the process of having an assessment and getting care from adult social care. I made is as a video as I know you find videos more accessible. Are you on Instagram as I'm planning on adding the video on IGTV as putting it up on RU-vid would mean refilming as it's not great quality plus the editing and adding CC which is all pretty exhausting and time consuming.

Unfortunately I must welcome you to the PoTS party and whilst fainting isn't that fun standing up too quickly is a perk as you get a high for free!

@@AGirlCalledNaomi 🤣🤣🤣

Thank you - any other suggestions for videos I'd love to hear them (PS apologies for my late reply to your comment)

You're very welcome - if you have any tips of your own to share I'd love to hear them and I'm sure other would like to hear them too

Thank you, unfortunately feeling like this is pretty much a daily occurrence to one degree or another.

Thank you very much