Tuesday, 28 June 2016

On Tuesdays we try to be Chipper

There is no doubt that this a cruel illness. 

For every inch it takes a mile. Every. Single. Time.

Alas it is Tuesday and on Tuesday we search for things to be chipper about. 

Four years ago I had a routine letter from my optician telling me I was due for an eye test. Pretty standard stuff. Yet I was incredibly, incredibly poorly. So much so that a twenty minute eye test would count as my month's exertion. My mum went into the opticians a few times before my appointment(!!!) to explain my circumstances and to let them know it was likely I wouldn't be able to do the whole eye test in one go. We still laugh about her making a nuisance of herself! "Just to let you know (again) that my daughter has an appointment next week with you and she's not very well..."

The appointment was hard and long but we managed it together, going back at a later date to choose my new glasses rather than trying to do it straight after the appointment as you usually would. 

Two years later and I had made enough progress that my mum didn't have to go in several times ahead of time to 'earn' the opticians that I was poorly and had a complex and low energy supply. She made my appointment for me again and escorted me there and back. 

Fast forward to June 2016 and I was able to phone to make my own appointment for the first time since The M.E. Years began. You might be confused about why such a small and trivial detail is worthy of being mentioned, but phone conversations are so hard for me. My brain can't seem to process the conversation very quickly or very well (perhaps without the help of lip reading and body language.) 

Not only did I make my own appointment but I drove myself to it!!!!! Alone!!!! I survived 40 minutes in Specsavers by myself; a huge contrast and improvement from that first appointment four years ago. It was not easy but my health held out long enough for me to shuffle in and out on my own, talk coherently to the staff, sit through the eye test, stand long enough to choose a new pair of glasses (along the lovely team did offer me a chair), and remember my PIN number when I had to pay! 

That my friends made last Tuesday a Chipper Tuesday! 

Thursday, 16 June 2016


M.E. is trying its best to grind me down at the moment. It's not surprising that it's kicking up a fuss. The last six months have possibly been busier than the pervious couple of years! Most notably I went abroad on my first foreign holiday since The M.E. Years began, hosted another Blue Sunday tea party, and then just over a month ago I moved house.

I am somehow managing to keep my spirits up in spite of the ever-present symptoms trampling all over the lovely things I have planned, the books I am trying to read, the television programmes I'd like to watch, the fresh air I'm craving to breathe, the blog drafts I'm hoping to finish. 

With the help of Mr Tree Surgeon and my family, my wobbly legs and I are managing each hurdle as it comes. It's possible that the hallucinations I sometimes experience since my brain decided to malfunction back in 2010 have progressed from visual hallucinations to now include sounds and noises. This does not please me! 

I am also trying to find a solution to what seems to be adrenal fatigue - I go into shock too easily if someone enters a room when I am not expecting them, if there is a volume change on the tele, and countless other silly little things that most people don't even notice. 

It's not all bad. I am being well looked after and cared for. My only 'job' is to concentrate on doing what's best for my muddled up and poorly body. It is starting to all feel quite tiresome but the silver linings are glistening brightly at the edge of each and every dark grey cloud. 

Wednesday, 1 June 2016

My efforts for M.E. Awareness week

Apologies for the delay in sharing this post with you. I actually recovered incredibly quickly after Blue Sunday, feeling back to 'normal' in just four days. It's so wonderful to be able to measure my progress each year. Alas this recovery was somewhat thwarted by my attempts to increase gentle yoga into my daily targets. Five careful minutes of lying on my back and bringing my legs up to my chest left me poorlier than two hours of hosting a tea party. Swings and roundabouts I suppose. My body was doing different and new things. 

Anyway here I am to share with you some photos of my fundraising efforts once again. This was our fourth tea party and we feel it went very smoothly. I think the head count was 72 people in the end and we raised £618.20 in cash on the day! I was so very touched to see so many people there; my oldest friends from school, family friends we've known for well over a decade, university friends from across the country, my wonderful extended family, and even a handful of people who'd seen an advert in the paper. I feel very lucky to have had two GPs, a medical student, and a host of medical professionals at my tea party and hope that the leaflets and information I'd provided helped to shed some light on M.E.

There were other tea parties taking place that day too. Katie, Chloe and Jaime-Leah have all held Blue Sunday tea parties before and yet again they used their precious energy to raise not only money for research and education into M.E, but also vital and accurate awareness. 

Blue Sunday 2016

Once again so many lovely people joined in with the party from the comfort of their own homes. The nature of M.E. means that even just sitting in the company of others can cause sensory overload and the exertion of travelling will likely mean that when you reach your destination you're too unwell to join in with whatever you'd planned to do! The virtual tea party helps make those who have to stay at home feel a part of something. These photos are some of those sent in by fellow sufferers and friends who sat online and watched the tea party through videos and photos I posted on social media.

Let them eat cake!
The Real Deal
A couple of lovely, kind friends made and sent me these!
Leaflets at the ready
A whole family effort
A whole family effort
A whole family effort
A whole family effort
Spot any familiar faces? I thought it might be nice for those attending my tea party to see how the online part of the day worked out in previous years
Can you see why I call him Not-so-little Bro...?
The perfect Blue Sunday cupcakes made by one of my oldest and best friends

In full swing at Tinwell Village Hall
A whole family effort
72 people joined us this year!!!
A tea and cake date!

Enjoying some leftovers as I was too busy to actually eat cake on Blue Sunday!