#NMOSUCKS #NMOFIGHTER

This is Megan. She's 16 and lives with neuromyelitis optica the same rare condition niamh our admin has. Go check out her newest video o er on PerfectlyKnitBeauty or click the link in her bio! @megan.woolf . . . #opticneuritis #demyelinatingdisease #transversemyelitis #neuromyelitisoptica #nmofamily #nmofighter #nmowarrior. #chronicillness #spoonielife

Had my nails and eyebrows done this morning readyfor the neuromyelitis optica fundraiser my best friends mum has organised with her burlesque class! I love them. They're like blue, gold, pink, purple and lots of other colours as they'll match anything. I'm really grateful for what my friends mum has done they usually raise £500+ for the chosen charity and when you have a illness that is ruining lives left right and centre anything is helpful! Laying in bed all asfternoon now to ensure I have the spoons left to enjoynlater today!!! Woohoo If you ever feel like raising money for a charity do it! Even if it's just a bake sale, this money saves lives. Have you ever done anything for charity?-Niamh . . . . #neuroscience #neuromyelitisoptica #nmoresearch #nmofighter #nmowarrior #opticneuritis #transversemyelitis #chronicillness #chronicpqin #spoonielife

No real out come from my neurologist appointment today. All my doctors are just leaving it to the pain rehabilitation center now. Have any of you ever been to a residentialpain center? Where and how was it? I'm excited to go explore other options of relief. Even if they don't work at least I tried. -niamh . . . #nmofighter #nmowarrior #chronicillness

Me and my mum went to see the Cardiff half marathon in support of those running for neuromyelitis optica research today. We managed to catch a few glimpses of people. It made me quite emotional to think that money is being raised for research to treat us and make our illness manageable. So many lives have been ruined by nmo leaving families devastated. Research is our hope! Thank you everyone who ran today. - Niamh . . #chronicpain #nmofighter #nmowarrior #chronicillness #neuromyelitisoptica

Last night wasn't too bad 5 hours sleep on and off and I finished the book #EverythingEverything it was amazing. Really represents SPOONIE thoughts and has such a plot twist! I'm going to some place with boats today- brain fog. Feeling calm and okay, a little fatigued and a lot of pain but that's life. What are you doing today? Niamh . . . . #neuromyelitisoptica #chronicillness #nmowarrior #nmofighter #chronicpain #chronicillness.

Basically my mission^❤️ Last nought was rough! Really struggle to fight through the pain and hypersensitivity. Just done my morning physio, well what I could do. It's weird started off with 6 exercises now I've got 2😂 I'm sure I'm going backwards here🙄. Not up to much today my family are going out but j really can't. I've been bed bound (besides going to the toilet) for this last week after that horrendous first day of my new school - I'm hoping to go again tomorrow please send me extra spoons!!!❤️❤️❤️-Niamh . . . #Neuromyelitisoprica #devics disease #opticneuritis #transversemyelitis #chronicpain #jointpain #hypersensitivity #nmofighter #nmowarrior

She has the same illness as me -Niamh . . . . #Neuromyelitisoptica #chronicillness #spoonielife #chronicpain #chronicillnesswwareness #nmofighter #nmowarrior #transversemyelitis #opticneurtisis.