A real beginning?

It’s taken nearly a year and a half to really get down to it. Retirement seems like bliss when you’re still working – all that time to do what you want, to pursue your dreams. No more tedious team meetings or hours spent driving (an activity I’ve never liked.)

I said I wanted to bake and write. Enjoying baking would be a bit tricky now, my back and legs aren’t up to it, and sitting down to cook isn’t that easy, in spite of what the occupational therapist assured me.

So it’s writing. Over the years I’ve scribbled a lot, in a lot of notebooks. Disjointed scraps, angsty attempts at journal writing, clichรฉ-ridden character sketches, banal morning pages. (Shut up Inner Critic!)

I started a creative writing course with the Open University, but didn’t finish it. I’ve bought books telling me how to write, downloaded writing prompts, and joined a creative writing group, which was fun, but sadly didn’t last long.

I continue to buy and get given notebooks. This lovelies remain empty:

Last night, after a couple of conversations and encouragement from friends, I got down to it. I’d been thinking ‘I bet Jane Austen didn’t scour the local papers for courses on how to be a writer, she just sat down at her little desk by the window and wrote.’

So that’s what I did. I was in bed. Getting up and into the other room to fetch a pretty notebook would have taken my wobbly legs too long, inspiration would have said ‘bugger this for a game of soldiers’ and fled, so I reached for what was available by my bedside, something I’d been using for things-to-do-around-the-house lists and got stuck in:

The challenge now is to keep it going. Wish me luck!

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Crapola

There are days like today (and yesterday) when my legs are so heavy and my back is so painful and the fatigue is so overwhelming that I can’t summon up the energy to do anything more than read, watch Netflix (Luke Cage at the moment) and make the occasional cup of tea. I managed to have a bath this morning, but it’s wiped me out. At least I don’t smell.

The tricky thing is accepting that I genuinely feel like crap. Everything hurts. If a loved one was feeling this way, what would I do? Naturally I would settle them on the sofa, tuck a blanket around them, stroke their head, give them a cuddle, perhaps bring them a hot water bottle. I wouldn’t berate them or accuse them of malingering. I wouldn’t say ‘you’re just being lazy.’ I wouldn’t guilt trip them into forcing themselves to do stuff until they’re almost passing out from the pain. Stuff meaning the simple things – putting the washing on, making the bed, doing some exercises.

So today I’m going to be my own loved one. And gently tell myself…

Of course, some days self care means doing stuff – getting out, exercising, gardening, socializing, cooking something other than pasta bake or oven chips.

But not today.

Not a warrior

There are lots of memes, cartoons, blog posts, tattoos, even exercise programmes about being an MS warrior, for example…

I’ve said it before (I think) – I’m not a warrior. I don’t like having MS, but I don’t see it as the enemy. It just is. An unfortunate circumstance, a physiological fact, whatever, but it’s neutral, it’s not out to get me, it doesn’t have a strategy. It’s a mindless entity. Rather than be in a constant battle with it, I prefer to try and work with it. Adapt and accept. Use tools to alleviate the pain, fatigue etc., but not to wrestle in an exhausting never ending fight.

But I must point out, this is my preferred way, which doesn’t make it the right way. It just makes more sense to me, even though it’s not easy. We all do what we can.

A surfeit of inspiration

This is true, and quite a good reminder, but…

Sometimes I feel overwhelmed by the vast amount of advice, inspirational blogs and memes, books and websites. I own a load of self help books, mostly about pain management, acceptance, mindfulness, meditation etc. But some days, in spite of acting on it all, I just need to kick back, sit with my emotions and play Snoopy Pop on my phone.

Still, mustn’t grumble!

I think I am officially depressed. It’s a bugger, and it’s very hard to do anything about it when you lack the motivation to do much more than get out of bed, go downstairs (still in pyjamas) and watch mindless telly. All day sometimes.

What I really want is to find a purpose. (Sideline – predictive text said what I really want is to find a llama!?!) Work provided that previously – being a support worker, a midwife, even a home help. Now…that’s gone. And physically I’m limited. And old. MS has made me very introspective, self-absorbed and even lower in self esteem than before. I obsess about what friends and family can do…make music, grow beautiful gardens, create, travel, have passionate interests. And all the while, the fucking inner critic is muttering in my ear ‘you’re useless, you don’t deserve to be happy, you might as well do everyone a favour and drop dead right now. You pathetic, self-pitying lump.’

Well, that’s cheerful, isn’t it? But it’s helped a bit, just to get it into words. Watch this space. I intend to explore ways out of this mental shit hole.

It’s not just about the pain

The last appointment I had with my physio I was feeling awful. I could hardly walk, I was pissed off and weepy. She said what was clear to her was that my mood was very low (no shit, Sherlock). She did her best to persuade me that taking Pregabalin might help with the pain and then I would find it easier to move/walk/exercise, which would mean my muscles would get stronger, and my mood would improve.

I have a fear of these sort of drugs – Pregabalin, Gabapentin, Amitriptyline – which are meant to relieve neuropathic pain. The side effects are horrible. I have tried Amitriptyline and Gabapentin and hated them – they made me feel very strange, dozy, heavy and unpleasantly sedated. Pregabalin is meant to be ‘cleaner’, whatever that means. But it can be addictive and also cause weight gain, sometimes lots of it, and this lot:

headaches
feeling sleepy
dizziness
diarrhoea
mood changes
feeling sick
swollen hands, arms, legs and feet
blurred vision

Of course, I might not have any of the side effects if I did take it, and it might indeed alleviate the pain. But I’m simply too scared.

I told the physio that I’d give the Pregabalin a whirl, but when I got home I just couldn’t face it.

I’ve made my own plan to handle the pain: CBD oil, ginger, and turmeric. More MS exercises. Mindfulness.

But it really isn’t just about the pain, which I put up with for fifteen years before the diagnosis. Learning that I have an incurable, progressive disease, waking up every morning knowing that it won’t ever get any better; not being able to do a load of things – walking, gardening, hoovering, cleaning – that I was taking for granted before; all this drags me down and contributes to my low mood.
I do stuff to counteract it, and a lot of the time I’m ok, but I do have dark days. Just ask Kim.

Oh well, I’ll have to own up to the physio that I didn’t keep my word. Oops.

What went well

Also known as a gratitude diary. It’s a good idea – when I remember to do it! I lead such an exciting life.

30/12

Sleeping in fresh sheets
Made veg soup early
Kim made me biscuits
31/12
Did a doodle and put in blog
In the end, NYE was rather pleasant! Bubbly, Mock the Week, Nile Rodgers and Chic.
Had a really late night – 2am – and then slept quite well.
1/1
Woke up in a very happy mood – no idea why!
No hangover. ๐Ÿ˜ƒ
Had a nice bath
2/1
Went for a little walk with Kim and rollator, first in ages ๐Ÿ˜Š
Another blog post.
3/1
Shit day, v. low, but…
Watched Spectre & enjoyed it…
With a big bowl of popcorn
Kim made egg (double yolk!) & chips
4/1
Apart from preparing dinner in advance, I can’t remember anything – cog fog strikes again.
5/1
Took down the Christmas tree and cards – rather sad but at least I got it done!
Had a dram of posh whisky to bid farewell to the festive season.
Had a go on the pedaller.
9/1
Sorted papers! Kim’s burning tons of stuff in the garden.
Started mindfulness meditation again – Vidyamala’s body scan.
Exercised ๐Ÿ˜ƒ
11/1
Walked round Tesco unaided!!! Brilliant!
Christmas cactus flowering well.
12/1
Body in bits today (MS payback for yesterday) but…
Had croissants for breakfast
Bought a swish new kettle half price
Looking forward to Whitechapel tonight
W/B 22/1
Michelle sorted out my Kindle Fire
Made a great veggie shepherd’s pie
Did Pilates, MS society exercises and walked round Tesco again.