Sunday, 2 February 2014

M.E. - Who ever though that attending church would be such hard work?!

Hello all...

Continuing from the title of this post... I've done nothing!

Well, that isn't completely true... I made it to church this morning, the usual problems with parking the car meant I had a few minutes walk from my car to church. To the average person, this is no biggy... but when you have M.E. you have to think about:

1. Getting up early is already a killer, typically my worst time of day.
2. Forget a shower, it doesn't even get considered before church anymore! The evening before if I have the energy.
3. Making my breakfast.
4. Brushing my teeth (this isn't including the trips up and down stairs).
5. Stress about leaving my glasses or my walking stick in the house because I'm too forgetful!
6. Over 10 minutes driving.
7. Short walk to church.

As you can see, already there are 6 things I have to take into consideration before even walking from my car to church.

By time I arrive at church, I sit upstairs as I'm late (my own fault but the earlier I'm up, the worse I feel). That's another flight of stairs taken into consideration. Now it's time to stand up for a hymn... No chance, I'm aching all over and my brain fog is so bad I don't know if I can even keep my balance.

Next up, the sermon... Now I can listen and take it all in... Wrong! If you asked me now what the sermon was about this morning, I'd have to be honest and say there's absolutely nothing I can remember. Is that because I'm not interested? Of course not, why am I there in the 1st place?! When brain fog is bad, nothing goes in and I mean NOTHING! My sensitivity to light meant I spent half of the service with my eyes closed to try and get some concentration.

After the last hymn, people often stay for refreshments. I went straight home. I feel extremely anti-social but what can I do? Stay and make myself more ill?

Should I feel guilty? The answer is NO but my answer is YES!

Why do I feel guilty? Well, to start with I'm a devout Christian, I truly don't believe I'd be here without my faith. Everyone has been great to me at church. I don't want people to think I'm anti-social!

Why shouldn't I feel guilty? Easy... because I have M.E. Is that a cop out like many see it? Absolutely not, no-one has said anything negative to me about my illness at church. Paranoia certainly kicks in, generally it's very hit and miss whether the next person you come across will be understanding of your illness or not.

Anyway... Needless to say the rest of my day has been non-productive - no naps but no production!

Here's to hoping we all get off to a good start this coming week! x


  1. Barry - I feel for you, it is so hard to do all the things we want to, and often we feel guilty about having to miss things too.

    I've a couple of simple suggestions for you:
    1. Keep your toothbrush by the kitchen sink. I have an electric one, so I don't even have to scrub. Oh and a perching stool there too.
    2. Talk to folk at church about your disability. Ask for a parking spot to be reserved for you near the entrance. And a seat downstairs for the service. I'm sure they'll understand. I have a Blue Badge and it often makes all the difference!

    Hope that helps - but I can understand how frustrating it is to find that what we previously regarded as such a small effort, is now like organising the ascent of a mountain... xx

    Meh to ME!

  2. Thanks Sally... Thanks for the suggestions! ;)

    I'd benefit greatly from having a Blue Badge. The problem with church though is that they don't have any parking so you have to park down the road anyway... unless I had a Blue Badge! I don't know too much about applying for them/the process etc...

    Luckily, there's a guy there who's been through the same, he was diagnosed with M.E. around 10 years ago so I've had a few coffees with him so that's been a good support. :)

    And indedd... Meh to ME!!!