30th November 2016

I don't know who to be today. I don't know *how* to be. 

I am a daughter-in-law. It's my lovely Father-in-law's funeral today, and I can't be there to say goodbye to this man who means so much to me. 

I am a wife and mum. My husband and daughter are grieving today, and I can't be there to support them. Can't be there to hold their hands, put my arms around them, let their tears soak into my shoulder. 

There are no adequate words. 

Bonfire Night

Breath clouding in front of me in the biting air, nose numb with cold, body wrapped up warm and cosy. It was the first time each year that I let myself wear hat, scarf or gloves; no matter how cold it got before November 5th, I saved up that delicious warm toasty feeling for that special night.  

Bonfire flames dancing, glowing against the darkness, warmth radiating.

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:

I Have News! (And, Finally, Some Progress!)

Some of this news is actually 'olds', and I'm really sorry to my family and friends who have been waiting to hear about stuff. It's just taken me a bit of time to get my act together. Also this was meant to be just a quick happy update post but I guess I needed to get a load of stuff off my chest - sorry!

Where to start?

Note to self...

Do not attempt to eat soup while someone is hoovering. Even with ear plugs in. Especially not when they've just changed your bedding. And especially not tomato based soup that leaves a livid orange stain on the nice clean fresh bedding.

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.

Unspoken Words

I've got so many posts that I want to write, so many thoughts I want to express. I feel like the muted, suppressed violin. So far, at last count, I think I've got about 16 posts that I'm in the process of writing, on a whole variety of topics. Some of those are almost finished or partly finished; some are just a collection of thoughts; some are just a title or a single thought that I want to write about. I don't know when I'll manage to actually write or publish another proper post, but hopefully it won't be too long.

In the meantime, I thought I would share something that I found amusing. My

Hope deferred...

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

Rant

I'm writing this because I just need to get it out of my head. Because it's 4pm and I should be asleep at this time, especially as I haven't slept properly so far today and I'm already exhausted from a tricky week and if I don't get some sleep soon I won't be able to sleep tonight - but I can't sleep. Because I can't seem to process this stuff in the privacy of my own mind and let it go. Because my heart is thumping and I can't seem to relax. Because I feel like crying (ok, I AM crying), and I know it's silly, I know they didn't mean it, I know they didn't understand what they were saying... but I just need to get it out of my head so I can relax and get some rest. I don't know if I'll actually publish this or not, but I definitely need to write it.

People say things they don't mean. I know that. I know they just say the first thing that comes into their heads. I know they're just trying to make conversation, to fill up what they see as an awkward silence. And what I need to vent about is by no means the worst unthinking comment I've ever heard; the prize for that probably goes to the person who told my sister,

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'.

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.