My Community

This is a small preview of kind of what I’ve been thinking about the last couple of weeks. For the first time, I actually reached out and asked for some moral support. I was embarrassed, as I’m usually the one helping others but it went well and I got the help I needed. I guess there’s a lesson there.

humiliating

M.E. Support

 

We have received the following message from a woman who wishes to remain anonymous:

“Apologies for the very long message but I am at the end of my tether with my GP, who whilst a nice and caring woman is just completely stuck on the belief that my CFS/ME is functional i.e. psychological.

I’ve tried everything. I’ve written letters (both short and lengthy), I got her a copy of the M.E Association’s purple book, I’ve pointed her to Unrest and What about M.E., I’ve tried speaking to her on the phone and most recently, I went in person to discuss my severely limited life for around 40 mins (during which I again tried to address her disbelief that this is a complex multi system neuro immune disease). And although she tried to be nice about it, she persisted with the functional aspect, directing me to a website called neurosymptoms.org which seemed to have almost every symptom you could think of, including my several ones. It even spoke about how we patients get ‘offended’ at the suggestion that our illness not biological in nature.

She asked me why it matters to me that the illness not be psychosomatic, basically challenging my ego I guess and I couldn’t get across to her that it’s because it affects the way I’m treated (or rather not treated) but she just smiled and nodded and patronised me in that way that they do.

It made me cry, again. I feel like a lunatic like she might be right and I’m just delusional somehow. That M.E. exists for others but not for me, that I’m one of the misdiagnosed ones that has mental health issues and no pathology. I’m angry and upset at the same time and I feel like giving up on getting anyone to listen.

This happened a couple weeks ago now and I’m only just in a place to try to process it. The self doubt is high and, well I’m lost. Can anyone help me put my thoughts/reactions in order?”

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Erm…A Little Late

The long read in the Independent was about M.E. and Unrest this week. I posted “I will be writing about this and my most recent saddening/maddening conversation with my doctor on my blog this week” then the M.E. takes hold and says “Uh Oh, you got too much planned this week missy – do you want to stay out of bed, or do you want to test me, mwahahhahaa!” (I imagine it with an evil laugh and a slightly Spanish accent – please don’t ask me why…

“I feel seen for the first time!” exalts one viewer. “I feel vindicated. I finally understand what’s wrong with me, I think I’ve had this all my life,” says another. A doctor…
INDEPENDENT.CO.UK
 Jen with wires

Oh Really, You Don’t Say?

I definitely feel like this sometimes when people are giving me their ‘sage’ advice. “Oh no, I never have thought of drinking my own urine on the first full moon in April, whilst standing on one leg and whistling Tubular Bells – you don’t say?!”…… or more realistically “Oh no, I never have thought of just grabbing life by the balls, cos you only live once and don’t want to miss all the fun, sleeping – you don’t say?!” 😝

I don't have the power

Chirp, Chirp, Chirp

Wowsers!

It’s taken me so blummin’ long to update my website and diary with all my teeny tiny posts since October, that I’ve run out of time (for time read energy for tasks) to write that piece I’ve been planning all week!

Oh well my lovlies, you’re just going to have to wait a bit longer!

So many topics to cover, it may be a bit epic… but if it helps me toward my target word count for that book, it’ll have to have been worth it.

I’m so damn chirpy this week I’ve even annoying myself! Ha!

🐥🐥🐥🐥🐥🐥🐥🐥

Socialising and Crash Avoidance

 

I had the best time at my friends’ house last night! I ignored my limits and stayed up late.

It was great to see some friends that I haven’t seen for years! I regret NOTHING. I have completely rested today in the hopes of avoiding a crash. I’ve taken vitamins and kept hydrated, I’ve eaten two light snacks instead of any heavy meals and I hope beyond hope to stay ok, ever the optimist.

David, on the other hand, knows this will happen…

 

Comic Nails the difference

Chronic Fatigue Syndrome on The Mighty

You’re going to want to share this.

A Proper Crimbo (Selecta!)

Hi folkarinos!

Did you survive Christmas? I did with David’s help. It’s quite snowy here so I’m snuggled up indoors. Will write a proper post in the new year as I’m currently resting up and gearing up to go to a hogmanay party for the first time in years. Just a couple of hours, early doors but it will be nice to get dressed up and feel a bit pretty for a bit. In the meantime, here is me at about 7pm on Christmas Day (I’d just got up from a rest and topped up my facepaint). Do you not lurve my funky Christmas tunic?

 

Christmas Me