'Triumph In Adversity' Awards

As I'm sure many others have done, I have in the past attended funerals or read obituraries online, and heard amazing things about the deceased. I've also too often heard the regret of their family and friends that they didn't tell their loved one those things while they were alive. I don't think we should wait until someone dies before we say how amazing they are!

For a long time I have wished that I could nominate various people for some kind of national hero/bravery/courage award, but many of the people I would want to nominate would not be physically able to attend such awards. There's also the issue that many of my online friends live in different countries and I don't know which awards are given in each country; not to mention that I find it difficult cognitively to fill in those sorts of forms, and I've never heard back from any of the nominations I have done! Whilst writing my recent 'Do Not Go Gentle' post, an idea blossomed in my brain, and this post is the result.

Do Not Go Gentle

Grab the cuppa of your choice and make yourself comfy, this is a long one! But it may also be the most important and passionate thing I've written.

I love Dylan Thomas' poem 'Do Not Go Gentle'. (Click here to go to YouTube to hear the full poem read by the man himself.) I know, I know, it's about death, but actually I think it's about life and how you live it. We all have challenges of one kind or another; do you just resign and submit to the hand you've been dealt? Or do you strive for 'life in all its fullness'? And what does that mean for those who are very severely ill, who are already in a living death?

Another poem I've thought a lot about lately is Invictus:

Parenthood and M.E.: A Difficult Combination

I first realised how much I really wanted to be a mum when the doctor sat on my hospital bed, told me what they'd found in the gynae surgery I'd had the day before, and gently imparted the news that I was highly unlikely to ever conceive, and if I did, there was a high risk of me having an ectopic pregnancy. I howled. Right then and there, in front of this poor kind doctor and with only a thin curtain between myself and the other patients on the ward, the bottom dropped out of my world and I howled and sobbed my heart out.

8th August is Severe ME Remembrance and Awareness Day

Today, 8th August, is Severe ME Remembrance and Awareness Day for all those who have lost their lives to this horrific disease, and for those still living with it.

People who knew me before I was ill may think my situation is bad (and don't get me wrong, I'm not saying it's great), however I honestly count myself as fortunate as I know so many others who have much, much more severe ME than I do. I know of people who have died from it, I know people who literally only have days to live, and I know people for whom every day is a living nightmare.

The devastating reality of severe ME

I'm not even sure how to introduce this. If you are in any doubt about how severe and progressive ME can get for some people, click the link below to read a post from someone in the final stages of their ME journey. I don't know what my future holds or when/why I will be in my final days; I can only hope that, when my time comes, I face it with the grace and courage that she is showing. She is a huge inspiration to me.

http://documentingme.net/2014/07/11/final-stages/

Hope deferred...

Sometimes you don't realise how much you're looking forward to something until it doesn't happen.

Parenting Problems #2: issues with my daughter's health

OK, so I know that in this post just a matter of hours ago, I said that there would probably be more 'Parenting Problems' posts in the future - but I wasn't expecting to need to write one quite so soon!

Parenting Problems #1: getting my child to the doctor.

I'm calling this 'Parenting Problems #1' because I suspect there will be many more to follow...!

So. The day I've been dreading has finally arrived: I realised yesterday evening that my 3 year old daughter E needs medical attention. She almost certainly has a UTI. Yay(!) (On the plus side, I'm hoping that this at least explains some of her recent difficult behaviour!)

When I realised about the UTI, my first thought was, "Oh, poor thing!", closely followed by, "What on earth am I going to do about it?!!"

The Quiet Violin

Grief is a funny thing - ok, bad choice of words, but I can't think of a better one right now. Funny 'strange', not funny 'haha'. Just when you think you've done your mourning and come to terms with things, grief hits you like a blow to the stomach out of nowhere.

People who know some of the realities of my current life are often surprised by how cheerful and positive I am. I guess I'm just an unquenchable (ridiculous?) optimist. Don't get me wrong, I am not immune to depression; I have hit some very deep dark places more times than I wish to remember. However, this current bout of ill health is not the first time my life has been severely restricted by major health problems - I think it's the fourth, if we're counting. So even before the ME, I'd already done a lot of grieving and raging at the world about loss of health; I'd already had a lot of counselling and done a lot of processing. Don't try coming to me for any answers though, I don't have any! Life just is what it is; there is no such thing as 'fair'.

Is it bravery if you don't have a choice? (Or: Kudos to carers)

In the past few weeks, I've been described by a few different people as 'brave' and 'stoic' and things like that. And that's lovely and everything, but I don't really think it's true. It's not like I've chosen this life. It's not like I'm doing it for charity (sponsored breathing, anyone?!), or like I've stepped in to take on someone else's health issues so that they can live life again - and yes, I know that one's not actually possible, but what I'm getting at is that I didn't choose this. I'm not brave, I'm just someone who is trying to make the best of life in a difficult situation, like countless other people around the world. I don't know anyone who has a perfect life, who doesn't have some issue of some sort that they have to endure. I'm not brave, I'm just human.

You know who is brave, though? My husband. And anyone else who is a carer. They have a choice. They don't *have* to stick around. They could walk away, but they don't. They are true heroes, and they deserve the highest honour their country could bestow.

"Your Call Will Beyonce As Soon As Possible"

Communication can be a hit-and-miss affair when you have ME. Between variable cognitive impairment and muscle problems (all the way from slightly weak, or a bit of twitching, to temporary paralysis), things can get a little tricky! Even if you can work out what you want to say and have the physical ability to speak, sometimes there just seems to be a huge block between the brain and the mouth, and the words you desperately want to say just won't come out.

And sometimes, as far as you're concerned, it's all worked fine - but then the blank/confused look in the other person's eye tells you something got lost in translation. I was once part of a hilarious online conversation where we were all recounting funny stories of ridiculous things we've said or done because of ME cognitive problems. One person's story went something along the lines of,

Unwanted milestones

So today my husband had to feed me. As far as I can remember, no matter how bad I've been before, I've never let anyone feed me. Today I had no choice. And I could only cope with mushed up soft fruit in yoghurt. And I was utterly exhausted afterwards.