Hope

I am not having a good day. My tummy's been asleep the last couple of days so I've been nauseated, and none of my meds seem to have been absorbing (which won't be helping the stomach either) so I'm in a lot of pain of one kind and another and a bit fed up.

It's verging on that tunnel-vision can't be distracted from, can't do anything else, feels like it will never end kind of pain/nausea. It shakes my confidence in my ability to manage my condition. It makes it hard to remember that life is not always this way and that at some point in a few days or a few weeks it will hopefully get a bit better, as it has done before. It makes me think that there is no way I am ever going to get back to uni, because there is no way I could study / work feeling the way I do today.

I know that this is probably just payback for a couple of weeks of busy days and being a bit lax on my tummy friendly diet plan over the (not)wedding/honeymoon, or to do with the anxiety surfacing around my driving test / everything that needs to get done before I get back to uni, or another infection like the bronchitis I had a few weeks back. I know that one or all of these has triggered this flare and that it will ease, but I'm scared that it won't. I get scared every time that I won't recover. I have found as well that each flare has residue - they all leave things a little or a lot worse than before. So I'm lying here wondering what's going to be different now.

So much so negative. I feel like I should apologise. I know it can be hard to stay positive when you feel like others are dragging you down, so I'm sorry if this is too much negativity. I know that other folk, including other folk who will read this have much more to deal with right now that me.

There's obviously a lot of great stuff going on for me at the moment and I am thankful for all of it. I should say that. The good and the bad are running in parallel like they always do.

This was supposed to be about hope though, so I will get round to that. Chronic illness brings its fair share of bad days. I find that it helps to accept that and be prepared for days when you feel hopeless. I have a stack of books / kindle list of books that make me feel better - either funny things or books about mindfulness (for example How to be Sick which I read on honeymoon and highly recommend). I have several playlists depending on which breed of bad day I'm in - angry music, weepy music, gentlyacousticyhappy music. I have a bad day box full of distractions - games, bubbles, felting and card-making supplies.

Most important to me is a small black notebook which I call my 'bad day book'. I started this book in the middle of a severe depressive episode / fatigue flare and am still adding to it. It is full of quotes - some cheesy'n'inspirational, some from the Bible, some from books I have read on mindfulness or recovery, some silly poems. After I've finished this post I'm going to write the vows we used at our blessing in to it. The aim was to have a book full of gentle, hopeful, positive words that have meant something to me during previous bad times, to keep me going. On bad days I read those words, sometimes I draw pictures to go with them or add new quotes in. It helps a little. Often helps me to identify the particular emotion - fear or grief or anger - that is contributing to a bad mood.

One of the readings we used at the blessing (found here) includes this :
"And in the moments – because they will come –
when...the story of love feels like it has no words left to be told,
may the silence that stretches before us
be filled with the faith
of the echo
of the memory
of the love
spoken into the world
before all time began."

Sometimes that's what bad days feel like 'the faith, of the echo, of the memory, of hope'. A tiny whisper of hope is enough to keep you going.

Lots of (Good) News

I thought we could do with a little positivity after my previous overwhelmed and gloomy post. In bullet point form :

- My communication cards arrived. I haven't had to use them yet (typically).
- I got my discretionary blue badge.
- To celebrate I got a pretty holder for my blue badge which arrived super quickly in the company of the radar key* I'd never quite got round to ordering before.
- The next day my DLA letter arrived - I got high rate mobility and mid rate care as I hoped. I was expecting to have to go all the way to tribunal so that was a welcome surprise. The awards are indefinite, which for me will probably mean until I'm assessed to transfer to PIP at which point anything could happen.
- This means that I can apply for a motability car. I can't tell you how much of a relief that is. My driving test is coming up pretty soon so I'm hoping that this run of positivity will extend that far!
- The payments get backdated to when I got the form in February which means that I can afford a couple of impairment related things (such as an exercise bike to maintain muscle tone in my legs) that I couldn't afford before.
- I had a cardiology appointment yesterday. This would not normally be good news. I asked him about my diagnosis and we had quite a useful conversation, the upshot of which was that I have autonomic dysfunction (quelle surprise) which 'seems to be more the POTS than the bradys and the vasovagal' (and I quote). He is king of vague and his English is not great, but in short I have (the) POTS. As with every diagnosis it's bittersweet - yay I know what the incurable chronic illness I have is called. Tis a step in the right direction anyhow.
- And best of all, my civil partnership is one week tomorrow and the blessing is two days after that. Exciting!

I feel a little guilty because I know that a lot of you are not having a good time of it right now, but equally I know that noone recognises the importance of enjoying the good times like folk who have more bad days than most. So for now I'm enjoying good fortune, keeping out of the heat (DLA backpay meant that I could buy a decent fan to stop me collapsing several times a day every time the temperature goes over 20 degrees) and resting up before the big day(s) (long weekend really).


*Radar keys unlock disabled toilets signed up to the radar scheme (in a lot of public places like stations and shops the toilets are locked to stop people trashing the place etc. This is good because I'll stop having to go round the houses to find the person who knows where the key is, but I don't like the system at all. Well, rather, I don't like that it has to exist, as in I don't like that disabled toilets are locked. But that's another post.