Here's my contribution to the Photo challenge from last year, though I have changed a few things & a couple of photographs as they simply aren't relevant anymore & although this is from last year, I still want it to be up to date.
Photo: Quote Relevant to M.E
Comment: How it feels to have Myalgic Encephalomyelitis.
I love these quotes because being brave is some times the only thing you can be when dealing with this illness, yet it's something that M.E sufferers do quietly, so quietly that the struggle often goes unnoticed. Especially during times when you can't see an end to the symptom flares & your life looks bleak. Being brave helps you to endure & reassures you that you've survived a bad flare before & this one will be no different.
Being brave helps you to not let the fear of PEM get the better of you & helps you to carry on with life the best you can & plan for the future.
Photo: The Face of M.E
Comment: People without M.E should be aware that...
People without M.E should be aware that even though someone with M.E may look OK, managed to put some makeup on, done their hair & managed to go out, like myself in the top right & bottom left pictures. This doesn't mean that we are cured or that we don't still feel ill. We just might be having a better day or spent the previous days resting in order to make it out on that day because we know whatever we want to do is worth the effort. So be kind & rather than saying "oh you look good, are you better?" Simply acknowledge the effort the person has made & ask before you hug them as we sufferers are sensitive creatures & a hug can hurt some days.
Photo: Comfy Clothes
Comment: Something that gets me through bad days is...
Prayer & a lot of it.
Multiple Cups of Tea & Granola bars.
Remembering that I've survived many previously bad or worse days & I'll survive the next one.
My mum giving me the encouragement I need to keep me going.
I have a couple of go-to films (The Fault In Our Stars & Hunger Games Catching Fire) I use for distractions if my bad day is a bad pain day, (which thankfully isn't too often anymore) or I need a reminder than overall life could be worse, my condition has improved so my life isn't at risk anymore & I'm too old to be sent to the reaping!
Photo: What you do on a good day - Go for a drive.
Comment: If I had unlimited amounts of 'Spoons' for a day, I would...
Travel to places I have always wanted to go too. Or I'd go to the yard I use to ride at. I'd spend the day with the Bailey Boy & Splodge & just forget everything else going on around me & I'd come home smelling of horse.
Photo: Something M.E makes you value:
The quote is from The Fault in Our Stars by John Green & I agree with it. God knows exactly who we need & when. My M.E makes me value the people that have actually stuck around & are supporting me. It also makes me value those that have judged & abandoned me - you have made me stronger & helped me learn to let go, so thank you!
Having M.E has taught me to slow down, to appreciate the little things, to be grateful for all that I have & not take things, health or people for granted. It has taught me to look for & focus on the good in everyday, which can be very hard to do on the bad days. Being negative doesn't help anyone, so counting blessings & keeping faith & hope in what's to come keeps me positive.
Its taught me that though I may have lost a lot, I have gained so much more.
Finally it's taught me how much satisfaction there is when you take the sip of a cup of tea that you've managed to get downstairs & make yourself!
Photo: Spare a Spoon
Comment: My best advice to a fellow Spoonie is...
That it's okay to not be okay. Remember M.E isn't easy to live with & you'll have times when the negative emotions will get the better of you. But that's normal, what you have to deal with some days is awful & you will want to cry & say it's not fair. So give yourself time to feel & work through the negatives, trust me, you'll feel a whole lot better when you do. Then once the negatives are subsiding, you can carry on being the awesome person you are, remembering you're doing your very best to keep going despite all you are dealing with.
Photo: What's pushing you to recover? My love of God, Horse Riding & Photography
In a years time it would be nice to not have to put so much thought into every single thing I do. That I will have got a handle on having the right balance between activity & rest. Which then will mean I'll be able to travel, be fully back on the ministry & doing other things I'm currently not able too. I have plans & things I want to do in the coming year & even though I know may hit a few bumps along the way, my recovery is on the track.
That last comment is so interesting to read, as I haven't read it for a year! At first it made me sad, as I still have to put a lot of thought & planning into everything I do & want to do, but I've realised that that is simply part & parcel of living with M.E & although that's a frustrating thought at times, I know in the long run, planning & pacing out activities is beneficial for my condition & helps limit the payback & relapses.
There are still many things that I would love to be doing but am still unable too, like travelling to far off places or being fully on the ministry again doing 30 plus hours each month, working, Horse riding & other things I use to enjoy in life before the Moderate/Severe M.E came along.
However, there are a couple of really big things that I never thought I'd be able to do or achieve, especially now that I'm Chronically Ill, I didn't actually think I'd be able to do them when I was healthy, despite the wanting to. Yet, in the past few months, I have achieved those things & now have new goals that I'm working towards!
It's funny how when you're imagining one life, that you never thought you'd have but actually could, you can get thrown a massive curve ball & suddenly that plan is gone. For a time you are devastated & not sure quite where you go from there. But life then shows you something well & truly better & helps you to realise that actually what you had before was holding you back from the things you could achieve! I know for sure that if things hadn't have changed in my life, there's no way I'd be doing a few of the things I am now doing & the things I've managed to achieve so far!
Okay I've just realised that sounds completely mysterious & you're probably left think, "what on earth are you going on about?" So I will try to do a blog post about what I'm up to at some point. I guess my point with that little ramble is that even when you have a chronic illness, like M.E, life is hard there's no doubt about it & the life you once thought you wanted may no longer be an option. But it's also possible to actually have a form of life, to actually live with this illness & to achieve the things you want to do!
To all my fellow M.E Warriors reading this I hope that this gives you a sense that you're not alone & to also not give up. You are stronger than you think & you can achieve the things you want to in spite of this illness.
Take care all of you & I hope you have a lovely M.E Awareness Day