Once again (I know I sound like a broken record), I'm all out of sorts. Very, very tired, but unable to sleep. And even when I do sleep, however long I sleep for, the fatigue and the pain just grow and grow. I'm constantly out of batteries. Trying to push against it just causes more awful physical pain, shakes, tremors and dissociative seizures.

Today I've had two 'episodes' - dissociative seizures with violent shakes, tics and tremors (I don't even know how to explain them properly. I'm not entirely sure what they were, to be honest. I do know they were involuntary, painful and exhausting. But they passed.

And tonight, still, sleep evades me. Even though I came to bed at 10:45pm.

I'm tired, in pain, and feel so lost. The house is so silent, just the gentle hum of Paul's occasional snore, which is oddly comforting. Luckily, I've lost my sense of smell, so we can count that as a silver lining, if you know what I mean.

To live a relatively uneventful life, day to day, with reasonable sleep, would be very nice. I know my battery is flat and may never recharge fully again, but I can daydream, aspire, make this a goal, can't I? I just need all the pieces of the puzzle - NHS support, treatment plans, therapies, everything.

There is no rhythm in my day-to-day life. It's all so chaotic. I need some balance. I've taken a big kicking from COVID, and my physical health has taken a huge step backwards. NHS waiting lists are so long in the UK, and there is No treatment pathway for FND. So for now, we're going to have to muddle through with a DIY way of managing my conditions and try to find some kind of balance.

The Plan (such as it is):

• Regular-ish pattern of sleep
• Graduated exercise to build up stamina
• Nourishing, healthy, clean eating
• Trying to be a little kinder to myself
• Letting go of the things that upset and worry me, the things I can and can't control

Sometimes, things are just the way they are. I need to calm down and stop getting overwhelmed, anxious, and stressed. Just go with it. I need to break the cycle, find peace and calm. My own way of coping.

There's little to no help out there to treat my conditions, so I've got to help myself. It's up to me, with the unwavering support of Paul and Connor. One per cent. Baby steps.

Sounds easy, huh?

Not so, which is frustrating me - but let it go, Sha. It doesn't help.

 

Update: 24th September

Unsettled night due to pain and tremors, a headache, nerve pain in both arms and hands. And I've got a case of the twitches, so there was a bit of clock-watching from 4am. But I tried not to stress. Pocket Sha (my inner voice) stayed relatively calm with the help of a bit of medication. Finally woke at 8:15am. That's a silver lining right there! The first in a while. I'll take that.

Afternoon Update:

My hope is that today will bring a little respite from what has been a horrid week. Resting and only doing the essentials has worked. But it's going to be more complicated than I thought. I am running on empty. Even going to the bathroom has been painful; my nerve pain levels are up, and my heart rate raced like I'd run a marathon. So back to bed, feeling out of breath and what felt like palpitations.

It's only 3:47pm and time for a nap...

Evening Update:

But then I only went and blew it, didn't I? Went downstairs, 'helped' with dinner, ate, and came back to bed and...

PANTS.

Still, today has been my best day in a while. So I'm still counting the silver linings and blessings. 🙏

Today's Intentions:

• Rest (actually rest, not "unhelpful" rest)
• Only do the essential; not everything (WIP)
• Listen to my body
• Not beat myself up when I overdo it (working on this one too)

Three Good Things:

1. Slept until 8:15am - First time in ages. My body clearly needed it.
2. Paul and Connor's support - Unwavering, patient, loving, kind, and making me laugh so much at myself at times, my ribs ache with the joy of just having them there, even when I'm a proper grumpy kincowbag and my body's being a complete nightmare.
3. Still here, fighting - Some days that's enough. Some days that's everything.

Namaste 🙏

Love, Sha x

P.S. To anyone else going through similar - you're not alone. It's okay to have rubbish days. It's OK to cry. It's OK to be frustrated. And it's absolutely okay to celebrate the tiny wins, like sleeping past 8 a.m. or making it through a day without completely falling apart. 1% improvements. Baby steps. We'll get there.