Tag Archives: ME / CFS

What is Your Happy Hour?

22 May
Yoga is the new happy hour

Photo by Jess B. Illustration credit Papyrus.

Yoga is most definitely my happy hour. It’s my ‘me’ time; a time just for me, a time that makes me happy.

The more traditional happy hour?

Happy Hour Cocktail anyone?

What is your happy hour?

Something traditional like a cocktail? Or something different such as yoga? Let me know!

If yoga is your happy hour, you might like to check out my posts about yoga and how yoga helps my ME / CFS.

Friends: “I’ll be there for you, when the rain starts to pour”

20 May
Friends

Gotta love Friends.

I’ve been ill since December 2010. In those two and a half years. I’ve had friends come and go. Chronic illness is not a natural friend, as it were, to maintaining friendships. My ME / CFS has left me unable to work or socialize very much. I spend most of my time inside my own home. Add in to the equation the lack of energy, crushing fatigue, body pain and a myriad of other symptoms, you are left with a scenario that does not lend itself well to maintaining and building friendships.

I was going to write a post about losing friends through having ME / CFS. I’m sad to say that I have lost friends. Friends from work who’d I go out for drinks or dinner with on a weeknight after a long day in the office and University friends where parties and clubbing were a mainstay of our meet ups. These are two groups of friends that I’ve had little if any contact with since becoming ‘out of action’ so to speak with ME / CFS. Friends who were more takers than givers, leaving our relationships uneven and requiring me to make all the effort, these are the people who I have not heard from, nor do I expect to hear from. And you know what? That is just fine with me. I don’t seem to have enough time and energy to spend on my ‘real’ friends never mind any hanger-ons!

As I say this post was going to be about those lost friends. But then I thought, it is not worth using up what precious little energy I have today to write about them. I would much rather focus on those friends who have stuck by me, who have pursued me, who are wonderful and amazing and who I would never ever choose to be without.

I have truly learnt who my real friends are over the last two and half years. They are the ones who go out of their way to show me I’m not forgotten when I’m not in London for months on end, as being at my parents’ home in Lincolnshire is easier on my recovery than fending for myself in my flat with Mr B (Mr B by the way deserves a post all to himself, he is amazing).

My ‘real’ friends are those who regularly phone, email or text and even send pick me up parcels through the post. They understand if I don’t always reply quickly, if I’m too tired to talk or if I can’t see them regularly due to having to pace myself and rest so much. They are the ones who know a long chat will ware me out. They always offer to travel to see me, in my home, be it in London or Lincolnshire, rather than expecting me to meet them half way or me to go to them. They are the ones who have understood when I have missed important events in their own lives, be it hen parties, 30ths, baby showers and weddings, all because I was not up to attending because of ME / CFS. They don’t mind entertaining themselves or chatting with my Mum when I’ve bcome tired during their visit and had to go off and rest.

They have done all these things and so much more for me, despite all having their own busy lives and demanding schedules. In the midst of pregnancies, newborn sleepless nights and terrible twos, weddings and wedding planning, job changes and relocating hundreds (and thousands) of miles, house purchases and not to mention their own chronic illnesses, troubles and heartaches, these friends have not forgotten me and have constantly shown me how much they care.

Girls, you know who you are, and this post is for you. I love you all and value our friendships so much. Keep on pursuing me, if I can’t meet up or chat, please please know it’s not because I don’t want to. We have a little menace (actually a really big fat menace) called ME / CFS to blame for that. I hope it won’t last forever and I know there will be many more tea and cake fueled catch ups in the future.

Chronic illness can kill off friendships. But real friends stick by you and that is one very positive upside that I’ve discovered through having ME / CFS.

Niagara turns blue, green and purple for ME / CFS International Awareness Day 2013

16 May
Niagara Falls all lit up for ME / CFS & FM Awareness day 2013

Niagara Falls all lit up for ME / CFS & FM Awareness day 2013. Photo credit May12th.org

As mentioned in an earlier post, thanks to the hard work of the non-profit Canadian organisation May12th.org, we were treated to a spectacular show of powerful colour and light on the evening of May 12th 2013 as Niagara Falls turned blue for ME / CFS, purple for Fibromyalgia and green for Multiple Chemical Sensitivities.

Niagara Falls is breathtaking all by itself. Mr B and I were lucky enough to visit the Falls back in 2006 (before ME / CFS was part of my everyday life). The sheer power and force of the Falls’ water is incredible.

But seeing Niagara Falls all lit up in honour of the illnesses that cause so many of us so much pain, is simply amazing.

Did you stay up to see the show live either in person or via the Niagara Falls Live Webcam? Sadly with the time difference to the UK, I was asleep, but thanks to the stunning pictures taken by May12th.org, I don’t feel like I missed out at all.

You can see all the photos  here, the Facebook page of May12th.org.

A huge thank you to the May 12th Organisers who did all the hard work and made this happen. Do check out their website and Facebook page for more info and of course the all important pics!

For now, here’s another photo. This time Niagara is lit up in blue for ME / CFS.

The great Falls turn blue for ME / CFS. Photo credit May12th.org

The great Falls turn blue for ME / CFS. Photo credit May12th.org

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