It’s ok to not feel ok…

It’s ok to feel not ok.

When you have a long standing illness such as mine-NMO some days I feel like I can take on the world. I have no pain, my walking picks up pace, I feel good in my head-by that I mean that I don’t feel tired. I feel no pain, no fatigue-I want to look nice wear pretty things and go out and do stuff.

Other days…the pretty dresses can wait…I want jogger trousers…hippy tops, loose hair and bare feet. I have minimal make up and couldn’t care less about how I may appear. My waliking is poor, my altered gait giving me back pain, hip pain, ankles swelling, arches of my feet aching…and I just want to….sit….or nap.

It’s ok to feel like this. My body is still repairing itself.

Friends-I am now 4 years relapse free of optic neuritis free, 3 years transverse myeltis free-but my medication is a reminder.

August and September are difficult months. September 14th….oh god….horrible. It still stings-even reading my own blog posts. Three years since my paralysis.

Did I think I would be where I am now? God no.

I am so very lucky-I know this-but…..some days….it is HARD

Chris knows when I don’t feel good-not very often I get sent to bed!! -to rest lol.

I live on paracetamol-general aches, pains, fatigue-I am adamant I pay for these from Tesco not claim them free.

I am still me-I am very much for ‘body positivity’-but hell-some days I want to hide away in my joggers, scrag my hair up, drink tea and feel sorry for myself.

But dear friends-NMO would love this? Wouldn’t it-😯

To give in-to feel depressed-to thrive on feeling shit.

This is a reason why I often struggle with my current weight-yes I could do with losing some-but do you know what?

I am proud of the woman staring back at me in the mirror-the invusible steroid stretch marks once which were purple. The bruise free arms from less frequent blood tests, the acne free skin which was once covered from steroids-chest area.

On the days I feel good-that’s great and when I don’t…..then that’s ok too…!

Be kind to yourself


Spotlight on: Confidence

Wow…..well. That is definatley something I will never do…..that I can’t do…..

Watching the X factor….singing….yes sure after a good few nudges I will sing in a panto….but karoke……x factor….noooooo…..acting….yess……………stripped back singing…noooo….

Confidence comes in many forms-I love comedy acting…I don’t really do straight acting….my mum said the other day “It’s a shame you can’t think of stand up material” (hiding behind my hands…I laughed) “what you’re really funny!!” “Yes but it’s confidence mum” “haha!!! You have loads of it-that’s so funny!”

She is right-mum’s usually are aren’t they? Although at times we hate to admit it lol. Yes I am naturally confident-acting is portraying a character…stand just….me…I would love to do it…but…oohh err.

You see-I’m sure I have mentioned before about how NMO changed me-everything….mind set….self image but this is it….I got to a point where I thought: “you learn to walk again-then tell me how I should look” So I stopped giving a stuff-dressed how I like and built my own image-but it took a lot of self belief and hard work and I will be blogging about my next weight loss stint…but mind set….yep….that’s what hardened me. Fight or flight.

So I laugh loud, I wear glitter, I have big hair, I like petticoats, fishnets and anything quirky.


Why? Because I want too. I like it. It makes me happy. I’ve done the ‘looking ill’-(i do still have days!!)

But now, when people ask how I am…my response is”fine thanks” “yeah good-you?” Not my life story of NMO.

Why? Beacuse I am me. I am not NMO I am not a disibility or an illness.

Fight the good fight

Peace out….lolz xxxx