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.

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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. 😃
Had a nice bath
2/1
Went for a little walk with Kim and rollator, first in ages 😊
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 😃
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.

Twelfth night

Our tree and cards will be staying up until the last minute, which I understand is this Friday, the 5th. I don’t want to say goodbye to Christmas yet, and as we still have lots of booze and nibbles left, why not extend the holiday season? I’ve been free from vertigo since Christmas Eve, and apart from the usual MS crap (pain, balance, mobility and bladder) and not getting out much, I’ve been having a blast.

New Year’s Eve was fine in the end, Kim went down the road to a little neighbourhood soiree for a couple of hours, while I chose to stay home with the animals and Poirot on a loop, then we toasted 2018 with a glass or two of Freixenet and didn’t get to bed till gone two! Wonderful.

I was in bed by 9.30 last night though. Sadly I’ve turned into a lightweight –  late nights without repercussions are a thing of the past. Old age (any age over 35, that is) tends to have that effect, youngsters be warned!

Any New Year resolutions? No. I don’t like being disappointed.

Spinning

I don’t mean indoor cycling. I’m talking about vertigo.

November 24th was a good day. In the morning Kim drove me up to Brecon for my first appointment with the neurophysio, who was very helpful. She suggested keeping a walking diary: nothing fancy, just notes on how I feel before, during and after each time I manage to go for a walk, and gradually increasing the distance. In the evening we went out for a meal with friends.

Great! Two excursions in one day! Quite an achievement for me, made me feel good. But by about ten thirty I wasn’t feeling so good after all. I hadn’t drunk much, so I couldn’t blame the alcohol. I went up to bed, hoping that lying down would help ease the woozinesss in my head. I had to get up again within half an hour of course – MS bladder issues – and went arse over tit in the bathroom.

So began a month of vertigo hell, with the occasional day of reprieve. A lot of time spent in bed, much clinging on to stair rails and to Kim, horrible nausea, and plenty of fury and frustration. 

It passed eventually, but the enforced lack of activity has made it even more difficult to walk further than a couple of hundred yards. I’ll have to start all over again, and I’m pissed off. 

Still, New Year and all that. Chin up old girl.

Get a grip, woman

It hasn’t happened for a long while, but I woke this morning with my eyes pricking with tears and thoughts of sadness and regret. All the things I miss and can’t do anymore because of this crappy disease, missing my son, not seeing friends, not getting out there and living…yada yada yada. So very glass half empty. 

But that is me and I will turn it around today by accepting it: I am a pessimist, I always have been. I get sad a lot, I blame myself for everything. I rarely achieve the goals I set myself, with the exception of a couple of real biggies in my life. My self esteem is near non-existent.

So what? Does it matter? Does it make me a bad person? NO!!!

That’s my starting point for today. I accept it. Which strangely makes it easier to accept that some people do actually love me. I’m funny, I’m easy to get on with (poor Kim might disagree!), I’m non-judgemental, I’m caring, I love animals and I vote Labour. On the whole I’m a good egg.

Yay!! I’ve cheered myself up!