Hi, I’m Naomi, thanks for checking out my blog. So, you want to know more about me! I’m 30 and I live in the UK where I’ve always lived. I now live in my own little home, a little bungalow that is just perfect for me and it’s wonderful to now have a place of my own. Living with multiple illnesses/disabilities can be hard but I have some lovely PAs and carers who make it possible; some days are inevitably better or harder than others. I also have some wonderful friends who I regularly message and write to. Friendships is something that is really important to me and I greatly value.
I love being creative and I’ll give most crafts a try from macramé to decoupage to colouring to crochet to iris folding and everything in between! I also hand make cards which I sell through my Cards for M.E. project and I’ve fundraised for different M.E. charities and so far I’ve donated £175.
As well as crafting I love books. One amazing thing is that I’ve regained the ability to physically read books again which feels pretty special. I love listening to audiobooks too which is still reading too, just in a different way. I like lots of genres young adult, memoir/autobiographies, true crime, psychological thriller, feminist nonfiction, science/medical nonfiction, disability fiction/nonfiction and more, even poetry too.
Another hobby of my is pen palling. As great as a WhatsApp or funny animal video from a friend is nothing beats a letter in the post! I love how unique letter writing is and being so isolated because of my health and not having friends in person letter writing I find gives me that connection to the outside world - to read about other people’s lives and what they’ve been up to in their life. I have a big imagination so I think that helps. I love making each letter I send unique and I always love the idea of making postal workers smile with my pretty envelopes.
I’d say I’ve been ill since 2013; that’s when I think my M.E. began after a bad case of the flu that had some complications. I lived undiagnosed with a myriad of different symptoms until I was finally diagnosed in 2017 with M.E. as well as Functional Neurological Disorder (FND) (- though now I’m not sure about my FND but I don’t have a neurologist to talk to about my queries) but anyway when I was diagnosed then it was pick up that I could have some form of EDS (Ehlers-Danlos Syndrome). I was referred to an EDS rheumatologist and I had genetic testing which ruled out vascular EDS which was the first type of EDS that was suspected so with that ruled out I was then diagnosed with hypermobile EDS.
M.E. is a neuroimmune disorder that you acquire but EDS is a genetic hereditary disease so I was born with it a looking back now I can see the signs of it in me way back as a young child especially as I loved ballet and obviously my hypermobility was helpful whereas now it’s more of a hindrance.
EDS is classed as rare and it affects the connection tissue which is the glue throughout the body so it affects the joints, ligaments, organs etc. My joints regularly sublux and dislocate and some of my organs don’t work so well or have gone into failure.
My M.E. is now classed as severe. There is much more to M.E. than ‘just feeling tired’; if only! I’m in constant pain (on top of my EDS pain), my muscles ache and spasm, my legs especially hurt, I have brain fog and struggle to function cognitively, the fatigue is incredibly hard to describe, I get flu-like symptoms. Sometimes, on my bad days, even doing simple tasks will bring on Post Exertion Malaise.
I have other illnesses alongside M.E. and hEDS, such as chronic migraines, IBS, depression, anxiety and Complex PTSD but I don’t want to be a walking medical dictionary! I like to raise awareness but in a positive way and not over focus on the medical and on this blog I will write about all of my illnesses I just didn’t want to write all about them here.
I’ve needed the support and enablement from carers or PAs for several years now gradually building up in how much support I’ve needed. Now I need support with a lot of the basics, personal care such as getting ready in the morning and for bed, preparing meals and drinks, doing my weekly food shop, helping in urgent situations (e.g. when I have a seizure) etc. I get on well with my PAs and there’s a few agency carers I like to see on my rota. I find it important to have a good relationship with my carers and it makes things a lot easier when you can have a good conversation about lots of random things, and my PA can laugh at my [many] daft brain fog moments and I feel safe with them and I don’t mind asking them to do things for me or to support and enable me to do something I otherwise wouldn’t be able to do without them so I feel grateful for the care and support I receive. My Dad is wonderful too and is really helpful, especially when it comes to DIY jobs, then he’s my go-to person! When he can, work permitting he comes round for a coffee and sometimes brings a game with him too.
Other things about me are:
- I’m a Quaker
- Pink and turquoise are my favourite colours
- I love glitter
- Rainbows any time!
- I have far too many rolls of washi tape
- I also daren’t count how many bottles of nail polish I own!
- My cute animals are sloths and koalas
