Friday 31 May 2019

A post to end May

So May has been a busy month for M.E., mental health and EDS/HSD awareness and on my blog I've had lots of posts and guests posts covering all of the awareness events. May is also especially important as I have been especially important to me as I am affected by all three.

Guest Posts

It's been great to have so many great and varied guest bloggers write for me this month sharing their story to help raise awareness and understanding.

A big thank you to everyone who did a guest blog for me.

Awareness Raising

I've also shared my own experiences in blog posts as well as working with different charities. I made a video 'M.E. and Me' for Action for M.E. and my story also featured in the special edition of The ME Show entitled 'The Real ME'.

It's been great to get back into my campaigning work and also to use my experiences to help raise awareness and understanding. I'll defiantly be looking out for opportunities for next year, especially to raise more awareness of M.E. and HSD which are less understood.


Rather than doing a traditional blog post it was interesting to do the #meandmyME challenge as a way of sharing about my life with M.E. and it covered different topics and it probably enabled me to share more than in a blog post, plus it gave me new ideas and topics that I wouldn't have thought of to write about. It's was by @spoonie_village. It was one they did last year but I didn't find out out about it until after May and I've just found one that they ran this year so I'm thinking of doing that one for next year as it was interesting and different to do. They did run it as an Instagram daily photo challenge but I chose to do it as a blog post instead. 

Just a brief explanation... 

Myalgic Encephalopathy

M.E. is a multi-systemic (meaning it affects the whole body) neuro-immune disorder. It has many different symptoms, some are constant and some are episodic. and the severity varies from person-to-person. M.E. is much much more than simply 'feeling tired'.
Each Sunday I've published a post #meandmyME where I've spoken about different aspects of my life with M.E. It's a really difficult illness to live with as I can't my days or even hour-to-hour. I constantly feel like I have the flu and sleep doesn't make the fatigue better and you often feel like your limbs have been turned to lead and you can't think straight along with many other symptoms.

Mental Health

I've struggled with my mental health more of my life than I haven't. It began with depression and then I developed Anorexia and spent several years in hospital and I now also contend with Complex-PTSD.

Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder

HSD which again is pretty complex. HSD is a hereditary connective tissue disease. HSD is also multi-systemic can is caused by faulty collagen which is basically like the glue of the body holding all the organs and joints together. So because it's faulty it causes organs to become too stretchy and not work as well and for joints to become lax so they more easily sublux and dislocate. It affects the skins so it stretcher and injures more easily - I can't remember the last time my skin was free from bruises, cuts, scraps, scars and stretch marks. Veins are also affected as they're stretchier too so it's hard to get IV access and often I feel like a human pin cushion.