Tuesday, 28 July 2015

The Adventures of Anna Jones - Catching up with Cara

The journey 

At the moment I am apparently doing okay with car journeys. This isn't always the case. It's incredibly hit and miss. We had the sat nav, a map, and written instructions. 

Chief Navigator!
Usually I don't have to use any energy navigating. My wonderful parents have acted as my chauffeurs since The Beginning. They've taken me to see friends who live further afield as often as I can manage, and although it has been hard to still be relying on them so heavily at the age of 26, I will be forever grateful and dumbfounded by every single thing they have so lovingly done for me. 

This particular adventure was with my boyfriend, and as it was just Mr Tree Surgeon and I (and he was driving) I had to set up...well, as best as I could. 

The hotel 

The lift was a little dodgy but we braved it when my legs weren't co-operating. The bathroom had handles of the walls to help me get in and out of the bath and shower. It wasn't an accessible room so that was a welcome surprise! 

The main event

On Saturday evening I got to see the friend who helps keep me going every single day. We 'met' on Foggy Friends in June 2011 and eventually became Facebook friends and then daily text buddies. In October last year she braved the journey and came to see me. (Meeting Cara for the first time.)

We decided not to put any pressure on ourselves and made no firm plans, instead deciding to see how we both felt on the day. By some miracle(!!!!) we both felt well enough to make it out for an early dinner. Fancy that! 
I cannot tell you how wonderful it was to have a proper hug! There are some people who've I've met along the way with whom I only seem to have illness in common. Cara is not one of those. 

For over 2 hours we sat and chatted and laughed and ate as if seeing each other was the most natural thing in the world. Many 'normal' people turn their noses up at online friendships but they are a lifeline for so many chronically ill people. 

All smiles

To be in the presence of someone lovely is always wonderful, but to be in the presence of someone lovely who genuinely and wholeheartedly understands your situation is perhaps the best medicine of all. And the ultimate silver lining. I was pleased too that our boyfriends had each other to talk to as they are both in the same position; dating (lovely) ladies who suffer with chronic illness. 

It was the happiest time. 

Zoo Day

In December I decided to enter the dating game (Are we the real Undateables?) for the first time since being ill. 8 months on and Mr Tree Surgeon hasn't managed to shake me off yet. He is an absolute diamond, especially when it comes to accepting and understanding my limitations. While we were away we thought we'd have ourselves a little day trip.

Zoo Day marked the first time he would see me in my wheelchair though. I was not keen on him seeing me in it. I can't help but feel vulnerable when I'm leaving it to someone else to be incharge of...well...me. Don't underestimate how much bravery it takes to use a wheelchair when you've lived such an active and independent life before. 

Not too happy about the wheelchair or the rain but it did't dampen our spirits!
Happy faces. Introducing Mr Tree Surgeon.

I imagined there would be tears. How could he not see me as a burden or the poorly person I have become if he had to push me around all day? Yet the only tears that escaped that day were tears of laughter. It was my best wheelchair experience to date. It was a complete none-issue. I can't even describe how normal it felt to us; to have him pushing me around. 

Emergency breaks!

The bad bit

You'll probably be reading this and thinking "Gosh she managed a lot in such a short space of time. Silly girl." You may be right but every once in awhile we poorly people need to live a little. Alas it comes at a cost.

On Sunday night I was really quite unwell. It didn't feel like payback as such. More of a seizure. The rain had left me cold and if I get cold during the day it can stay with me for hours and hours afterwards. Like many people with M.E, my temperature regulation is shocking. My bones felt cold yet apparently my skin was boiling. With muscle spasms and intense fatigue and malaise it wasn't my happiest time. 

I probably hadn't drunk as much as I should have that day, despite being organised with snacks and drinks. Fluids seem to help during my crashes yet one small cup of water made me need the loo three times. This is very common for me. But always problematic as I can't really walk by myself during a crash. Not by myself. Luckily Mr Tree Surgeon is rather strong! And he must be because I'm not small! 

It wasn't the end to such a lovely weekend I'd hoped for; my boyfriend practically carrying me to the bathroom and actually having to lift me onto the toilet. I sobbed my little heart out as he did so. I'm incredibly lucky that he is more the willing to do such things, but I hate that his role now comes under carer too. 

No girl wants their boyfriend to have to help them use the bathroom like this. It felt quite devastating, yet I know I am lucky. 

Tuesday, 14 July 2015

Baby steps

Who'd have honestly thought I'd be starting my 5th Summer of this?! 

School holidays have tended to be the hardest times for me I think. Not that any of it is particularly easy. Some of you will know that my family runs children's activity camps during the school holidays. For as long as I can remember I either attended as a child or worked there. For six weeks of the Summer I'd be living in shorts and my purple t-shirt doing a job I absolutely adored! I'd be Queen of Reception and knew everything that needed knowing about the running of the camps. 

The Last Summer. Bum-bag swag...
The Summer of 2010 was perhaps the best, or maybe I've just attached so much meaning to it because it ended up being my 'last Summer'. 

For a long while school holidays could reduce me to tears. There was no escape from what I was missing out on. Distraction was hard because the house was full of equipment and paperwork and the phone was ringing constantly with customers making bookings. The feeling of being replaced is the hardest one I'd had to contend with in the last five years. 

The happiest days

This year though I have managed to contribute in perhaps the smallest way ever but it's been celebrated as if I'd single handedly run all three sites by myself. Ahead of the Easter holiday camp I managed to sellotape some paperwork together!!!! My handwriting, which had been unrecognisable because of my weak M.E riddled arms, is now back to normal 99% of the time. And with my improved concentration I could trust myself enough to do some of the little admin bits that needed doing. 

That was a few hours work one day. I am an incredibly, INCREDIBLY long way off from being employable aren't I?! But this summer I managed to help again and over the course of three days I laminated about 30 pieces of paper!!!!!

Celebrating the 'little' things!

It's sad that the girl who could work from 8am until 6pm everyday and then go out socialising with my work friends now cannot even take phone bookings because phone calls require too much energy and concentration. Yet if I choose to focus on the two tiny but huge contributions I've made to the family business this year, I can't help but feel incredibly accomplished and proud actually.