Friday, 12 May 2017

A Day in My Life...May 12th 2017

As is now tradition on International ME Awareness Day in this post I shall share what it's  like to live a day in my life, I'm writing it with a pounding headache so you'll have to forgive any mistakes!
I wake at around 8:30am, lying assessing the pain levels for the day. I slowly peel back the duvet and move my legs to the floor so I'm sitting on the edge of the bed, there I stay for a few minutes making sure I don't get dizzy, before putting my slippers on and gathering a few bits ready to make my way down the stairs, slowly but steadily holding onto the rail. 
 I get my breakfast, and take my morning painkillers. Then make my way back up the stairs again to get some clothes for the day. I have a short rest before heading to the bathroom to get washed and dressed. I then sit with a cup of tea for half hour or so.
I get my study materials out ready to commence a short study period. Spreading them out across the sofa and on a little table as I'm unable to sit at my desk for long. After about two hours (sometimes less) I stop, having had some rest breaks in between. I get my lunch and have a bit of a rest before watching an hour of TV. Another rest follows, before doing another activity; sometimes knitting, or something else not as intense as study, occasionally though it will be another short study session.
Come 4pm I'm starting to feel fatigued and have another rest, before getting up to help cook dinner, either by sitting reading the recipe off or sitting on my perching stool by the hob actually helping with the cooking.
By 7pm it's time to curl up on the sofa in my pyjamas. I might watch a single TV show. I have a hot drink and come 10pm I get ready for bed, take some painkillers and begin the journey up the wooden hill (stairs) to bed. I write in my journal, then find the most comfortable position and wait for sleep to claim me.
As with previous years post this is just an average day. Some days are worse, some are better. I adjust my activity levels and the aids I use accordingly. But this is the amount of activity I can handle with no negative effects on my health. Anything more and I pay the next day.
Looking back on last year's post it's great to be able to see I've made progress, the stairs aren't as much of an everyday struggle as they were 12 months ago. Life still isn't easy but it's  good to look back and see how far I've come.
Some things haven't changed since last time though, so I shall quote from my post back then:
"...when people visit I always put on a brave face, an act so they don't see just how bad the ME is. I don't do this for my sake, but to protect them from the truth. There are some who see the 'real' me now but it's taken a few years for me to 'drop the act' for them. And if they themselves are having troubles or stresses the 'act' of being better than I am and not letting on how bad I really am comes back to protect them. I don't want to add to their worries."

Tuesday, 2 May 2017

A Little Update

Well it's been longer than I intended between blog posts, but not to worry.

I've had some ups and downs these past few months but at the beginning of April I did manage to walk up the road to the corner shop and back on crutches! Unfortunately a week or so later my legs gave up on me again and I had to slowly build some strength back up; I'm getting there again though. Slowly but surely, I hope to do that walk again sometime this year.

Now as many of you will be aware, May is M.E. Awareness Month, and I usually make a big effort to raise awareness and quite often fundraise for an M.E. Charity. Unfortunately this year I'm going to have to take a step back; although my health is fairly good right now compared with what it has been previous years (touch wood it stays that way!) I'm on the final module of my degree, and unfortunately M.E. Awareness Month and the day itself (May 12th) falls in the final month of the course. I am currently preparing my final assignment and then have just over three weeks to revise for my exam, in order to manage that I don't feel able to do as much to raise awareness, or fundraise, this month. I will attempt to do my usual day in my life post but other than possibly sharing a few posts as and when I come across them on social media that will be my efforts this year.

I know from past experience I need to prioritise my energy and focus on my revision, especially as retaining information in my brain isn't the easiest of tasks thanks to M.E. I suppose in a way this blog post is a form of awareness, because most people wouldn't have to not participate in writing posts for awareness in order to be able to sit an exam. But such is life with M.E.

Until next time...

Sunday, 8 January 2017

2017, A New Year, Old Plans

I'm sorry for being so quiet in 2016. Unsurprisingly solid study from February onwards saw managing anything other than study a little difficult and so unfortunately this blog had to take a back seat, hence the lateness of this post!

I did however achieve one of my big goals which I think I set back in 2014; on Sunday 18th December 2016 I finally made it to the church carol service! I had to use my wheelchair, and the volume level was a struggle but I did it! And I'm immensely proud of myself.

For 2017 I have a few more plans I'd like to achieve:

• Pass B301 and thus get my degree!
• Graduate from The Open University (Ceremonies are optional but I really want to attend one, just depends where and when I can book one)
• Meet some of the great friends I've made online through university and M.E. groups
• Walk up the road to the corner shop (or even better the tearoom!)
• Go to the church carol service again
• Redecorate my bedroom
• Start thinking about what I'm going to do post-degree

Anyway I hope you all had a wonderful Christmas & New Year, here's to 2017 bringing great things for us all.