Entries Tagged as 'endo'

My so called (online) life

Posted on: Tuesday, January 29, 2013

so called life

Having a presence online is a bittersweet thing.

Most of us have a Facebook account and lots of us tweet. Many of us also stick our heads over the trenches and blog, exposing our lives to the interweb for better – and, very often – for worse.

Strange as it sounds for me to say, as someone who lives a lot of her life online, I find it very difficult indeed. An inconsiderate remark on a social meda platform can be heartbreaking. A well placed blow can be devastatingly hurtful.

I have blogged a lot on here about life with endometriosis and living with a chronic illness, which lef to me founding Project Endo, daily digital support for women with endometriosis. For every woman I support through this work who thanks me for it,  there will always be someone else online who thinks I am attention seeking. Equally, for every woman who is thankful for the posts, another will disagree with how it’s done or what is said.

You can never win online.

In the blogosphere, the cat claws can be out even more, creating a playground bully effect seeping through your WiFi. You simply cannot please all the people all the time in either the online world or the real, actual 3-d looking thing outside the screen and it’s just not tenable to even try.

People like you or they don’t, and that’s fine. Nobody likes to be told, directly or indirectly that they are surplus to anyone’s requirements in their lives, and the cruel rub of social media is that you can be told in no uncertain terms and with lasting and damaging effect,

Right up until my 20′s I had barely encountered any nastiness from friends. I am lucky to have a strong and loyal group of school mates who love each other, support each other, and will be there no matter what. They may tell me I am an idiot, or have behaved in a way they don’t think is ideal, but nothing cannot be sorted. That is real friendship.

I only encountered the confusing, manipulative kind of “friends” later in life, and was ill equipped to know how to deal with it.

Whether offline or on the t’internet, snark is hurtful, damaging, and toxic. It usually comes from the snarkers very own place of insecurity, sadness or confusion, but is hurtful none the less.

In so many ways I wish we could go back to basics, unplug, not “be” online, out there like a sitting duck waiting for the strike. But, I blog and write online, so you live by the followers and you live with the nastiness too.

When someone tells you they don’t like what you do, it can be a learning curve. You can take the comments on board, work with them, and be even better if you choose. Or, if it is a shadowy, well placed but ill advised dig, switch off. I look at Eva and Mia, those real life, loving, beautiful Minis and nothing else matters. I talk to my real life, actual 3-d friends and the online shadows don’t seem to have their hold. I look at all I have achieved, my 2 degrees, portfolio career and businesses run despite living in pain every single day.

You can’t please all the people all the time. But, you can be true to yourself which in the actual olde worlde 3-d place is all that really counts.

Do you find online life difficult at times? Would you disconnect if you could?

 

Diva Loves: Pocketcell

Posted on: Thursday, November 22, 2012

I love my iPhone. I use it for tweeting, emailing,  running with my Nike + app, Dropbox files, Facebook updates for pages I manage, staying in touch with my Cherry Sorbet and Project Endo teams when I am with the Mini Divas, and even – occasionally – ringing people. Who knew?

The the thing that always comes to bite, though it battery life. If I am using Wifi or 3g the batter life really suffers. An Endomondo-tracked bike ride really canes the life of my phone and there have been times when I have still got several kilometres to go but no more tracking power. On train journeys when it seems sensible to use the time for productivity, it can be a risky business is there is no power socket to recharge. A day in London without charging my phone and I am left returning back to the Fens with a dead battery and unable to check in at LEON on Facebook on the way home at Kings Cross. Sad times. Read More >

Light therapy for Winter

Posted on: Tuesday, November 20, 2012

I don’t know about you, but I struggle so much more with fatigue and depression once the nights draw in and darkness envelopes us from 4pm.

For endo warriors already battling pain and reduced serotonin levels, a light box can be a really useful aid to help combat the winter blues if you struggle with them. If you are dealing with pain and fatigue anyway, it can often be hard to make you sure get out enough in daylight hours to get the right amount of Vitamin D from sunlight before the evening draws in again all too quickly. Read More >

Managing expectations and endo

Posted on: Saturday, November 10, 2012

Coping with endometriosis requires a great deal of balance, not least accepting reality and managing expectations versus wanting the best for yourself and pushing life as far as possible.

I am away at a family wedding and have had to build into the equation things that someone with a chronic illness simply wouldn’t have to think about; a day and evening out requires a lot of energy, so I needed to balance how much I exercised in the preceding day of the wedding, I rested as much as possible prior to the occasion and ensured that rest time is accounted for to allow for the “pay back” energy expenditure of a large social event. Read More >

This week ♥ 20th October

Posted on: Saturday, October 20, 2012



Ooooh it’s getting all chilly and foggy isn’t it Diva Readers! I LOVE Autumn. I hope you have had a good week. Here is a snapshot of what I have been up to…

♥ wearing out the Mini Divas ♥ struggling with endo pain as the stress of the last few weeks takes it’s toll ♥ making arrangements for my darling Grandad’s funeral :( ♥ working on Project Endo, our new site is coming along nicely! Go and check it out :)  ♥Running and biking on the days I can, I ran 7 miles yesterday, 3 on Monday and biked 10 miles last weekend with more planned tomorrow. Being covered in mud on my bike makes me soooo happy! ♥ getting the kids into downhill biking…well, attempting to ;)  ♥ going starry eyed over dresses and trying to pick something for my rock star brother’s wedding in 4 week’s time! ♥ getting sadly hooked n Strictly Come dancing…oh dear… ♥ catching up with my school girlies on Friday night, I love a good chinwag to sort the world out.
What have you been up to? Are you getting out and about in Autumn orangey fogginess?

 

COMING TO TERMS WITH ‘ONE DAY AT A TIME’

Posted on: Wednesday, October 17, 2012

Today I am absolutely delighted to welcome the lovely Kate Neary to guest blog for me on Dex Diva. Kate is an endo warrior too, and also has to contend with Crohn’s disease. Kate tells her story of dealing with life one day at a time, and I am grateful to her for sharing her story with us. Over to you, Kate….

After years of being in incredible pain, being bounced between doctors in my home country (US) and the one where I lived (England), it was one afternoon in a sterile medical office that changed my entire life.  I was looking at images of my intestines riddled with ulcers and I was overcome with relief.  Odd, I know but I was elated. Read More >

Go play outside

Posted on: Monday, October 15, 2012


I don’t know about you, but I LOVE Autumn. I am in the UK, and the golden hues and bright sunny days with that certain Autumn chill  just make me smile. I find it hard to resist toast and loads of jam this time of year (not helpful for endo at all), so I have been making lots of seasonal soups to get that hearty Autumn food feeling.

As the nights draw in, it can be so easy to miss out on the daylight;  in Summer, if we are sofa bound in the daytime we know we still have an evening ahead to make the most of and get some fresh air. When Autumn and Winter kick in, I often find I need to re-jig my day to get those all important times of fresh air and some daylight.
Getting outside has so many benefits for body and soul. If your pain is not letting you go out and exercise, just take a mooch in the outside air for half an hour or so – if you move as much as you can whenever you can it benefits our bodies.
Getting outside earths us, connects us to the outside world and nature, and nourishes the soul as well as body. On Saturday I managed a 10 mile bike ride and revelled in the mud splashing around me and being in the woods. On Sunday I was in more pain so made do with an equally soul heartening pootle on the plot at Farm Club.
Set yourself a challenge to go play outside every day, and post me your Autumn pics!
(don’t forget, check out Project Endo for endometriosis support and daily emails).

The bigger picture

Posted on: Thursday, September 20, 2012

At the moment things have been a little crazy. My beloved grandad is 91, and in hospital with pancreatic cancer. None of this is unusual in life, but having an extra element in life to juggle has meant that my usual balancing act has been thrown out of kilter somewhat.

When I need to spend several hours a day either in hospital, on the phone to hospital, relatives, social care people, etc, juggling young twins, running my own business and dealing with chronic fatigue and endometriosis becomes tricky alongside daily stuff like running a household.

I made the call to back off from work to get my family through this tough bit and to try and rest when I can to be able to be there for the people that matter, my family both young and old. Read More >

Racer back love and Freya Active

Posted on: Sunday, September 16, 2012

 

Never one to make life easy for myself, I am currently training for Cyletta, a women’s 40k bike ride in Brighton in 2 weeks time, and Run to the Beat, my second attempt at the half marathon debut I made last year with Team Bangs on the Run.

As an endo warrior exercise is a hugely important part of my health and well being regime, also one that needs to be balanced carefully (see my post on Spikes and Heels for more about training with a chronic illness). Read More >

Lipstick and tea

Posted on: Wednesday, September 5, 2012

lipstick and tea

 

Today I have tickets for the Paralympics. It’s a beautiful Autumn day and I have been excited for ages about going.

I am on the sofa, I haven’t gone anywhere yet.

As is so often the case in an endo warrior world, the fact I buy a ticket means I spend money and never know if I can go, yet somehow I don’t give up doing it. I miss out on so many things, (and the irony of missing out on the Paralympics due to chronic illness isn’t lost on me). I refuse to give up planning things and hoping, however many times my hopes are crushed.

I have been doing SO much better recently with my health due to bringing lots of raw food into my regime and slugging green smoothies between yoga sessions like a demon, but I have been living in an ill body for a LONG time and this stuff takes a while.

So, I have been here, trying to get my pain under control with rest, painkillers and a cuppa. Then I decided to take some time and do my make up, try a new lipstick and just make myself feel nicer.

You know what? It has cheered me up a little.

Lipstick and tea may be tiny things,  but I now have a smile on my face.

Let’s see if I make it out of the house.

 

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