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Stuck in the Fog. Screaming into the Void.

Emily Jacob

Bank Holiday Monday. I have a lot of things to do today. Everyday I have a lot of things to do, that’s what happens when you’re trying to get a business off the ground, and the aim of that business is to change the world, and end rape culture. There will never be an end to the things to do. But today I have even more things to do because this was going to be THE weekend where I finally got things moving again, after 5 months of nothing because of this damn disease holding me back, or excuses because this damn disease is holding me back, and GDPR.

[Digression 1.]

Which isn’t done yet, but I did get the bits done last weekend that can be done until I get help with my opt-ins and mailchimp forms. Which I can’t get yet, because the helper is getting married, and then I’m on holiday, and it’s my first holiday in 7 years where I’m not trying to improve myself or my lot with extra training, or visiting a friend (and I do love visiting friends, but I am looking forward to being a tourist). I’m digressing. I’m not comfortable with not having things perfect for GDPR in that business, because whilst quite a rebel when it comes to breaking down systemic structures, I’ve also got good girl DNA running through my veins. And I know I also have this site, my other business, and the book site for the mission business to also do. But at least they don’t have freebie downloads, and newsletter subscriber lists. Privacy policies for this and the others will go up in due course, probably before Christmas. And ReConnected Life will likely become GDPR compliant just less than a month late.

[Back to the main bit.]

So, I have lots of things to do today because this weekend I wanted to get my business back on track.

[No, another digression].

I want to re-focus my coaching services so that I can start saying I’m here and I can help, to people again. I did some training back in February last year, which required another 4 months of early mornings coaching clients to pass, and it almost killed me. In fact, when I look at last year and wonder why, despite the amazing press I was getting, why my business stagnated even before this diagnosis, it’s because I spent the first half of last year training for this other qualification, and the second half of last year, consulting and taking part in the documentary, and editing and writing the book. (Oh, and working for the keep-me-sane-job. I used to call it the pay-the-rent-job but on so many levels it kept me sane. Past tense? Things have taken an odd turn there this year too. Am hopeful it’ll get back to the fun place it was… Sanity requires it.). Pro bono will be death of me. Or the business. Because, regardless of what everyone says, I am not, nor ever will be, a charity. There is a way for doing good to make money. There has to be. At least whilst we live in a capitalist structure. Or else, why the world? But, yes, coaching services need to get back on track. Adding a new programme, re-focusing the existing. Figuring out how to market them, and attract the right type of client. One who’ll both do the work to see the benefits, and will pay for those benefits.

[Back to the point now?]

It’s the third day of the 3-day weekend (and because I don’t work Fridays, the 4th day of my ‘weekend’). Friday I worked on the keep-me-sane-job because there’s too much to do in 4 days, or is it because there’s too much to do with MS brain fog in 4 days? (That’s a scary prospect. If I can’t work, I’m on the street, or friends’ sofas. No exaggeration). Friday evening, my friend visited, a good time was had. Saturday morning my friend was still here, and a haircut.  Saturday afternoon I needed to sleep because Friday night had been late. I’d planned that. I hadn’t planned that yesterday would also be a day of sleeping. I pretty much got up only to eat, and then go back to sleep again. I watched some TV, but couldn’t really pay attention to it, so went back to sleep. It was like I was existing, but not living.

That’s what it feels like. That the price to pay for living (seeing my friend) is to pay with 24-48 hours of existing. Sleeping, eating, going to the loo. Nothing else possible.

What’s going to happen come Friday when I go on holiday?

Pacing. That’s what they say. Pace yourself.

Well, yes.

I’ve got a ten minute walk with bag to the coach station. Then a 2 hour coach journey. Then I’ll chill at the airport. And sit on the plane. And the flight might make my feet swell up like they did when I visited my friend in early December. But the neurologist thinks that was the first of these lesions, so maybe it’ll be different this time. And we’ll get to the first night’s layover, have a dinner and go to bed. And I’ll be able to rest and get up refreshed in the morning. No need to worry that getting up the next morning will be the killer. And that the heat and humidity and lack of rest, and need to be up walking so that I can do the things I’m on holiday to do, will be too much. No, no need to worry. Because I didn’t just spend the whole of yesterday in bed because I had one late night on Friday, did I, it was just being lazy and unmotivated, because the self-loathing that comes with that explanation is so much more comforting when looking at what’s coming up for the holiday I’m so looking forward to, and which my soul so urgently needs, than the explanation that it is this disease.

Today my feet feel like ice, and when I touch them, they are burning up. My legs feel like jelly, but really heavy jelly. The headaches that started this week, and I thought sure was the oil I’m trying, so stopped taking, are still here regardless of how much water I drink, or ibuprofen I down. I am so tired. Not just literally. But in general too. It’s been so long that nothing feels normal. I don’t know how to exist anymore. I don’t know how to convince myself to brush my teeth, or walk one step at a time, holding onto the banister for dear life (and one of the wooden struts is definitely getting loose), to make coffee. As I’m writing this it’s 10.21 and I’ve been awake in bed since 6.36 trying to convince myself that I could get up, that I could start my day, that I could get things done, and all I managed was to go to the loo (and now I’m writing this, and yes, I managed to make the coffee first).

I’m stuck. I can’t see my way through this fog. I don’t know how to break free. I’ve forgotten what feeling free feels like. How long is it going to take to feel better about this? I started a Twitter account for this (@magicalMSytour) and followed the usual suspects, and followed the recommended people based on those… And everyone is so upbeat. It’s all about how we can overcome this, how we can kiss MS goodbye, how we can run a friggin marathon. The forced positivity of the rhetoric on that timeline is infuriating. The Facebook groups were worse, but the other way, full of details of how bad it is for people, making me feel that my moans were just not as worthy. Friends who think they can help sending me links to diets, or mental resilience gurus. I want to scream and scream and scream, but in this fog no sound is coming out.

[Did I get to the point?]

It might’ve helped if I’d known what point I wanted to make. But, well, this is a small snapshot of the inside of my head today. In good news, it turns out ticking the box on the brain-class forms that say you’re a bit apathetic about the concept of living means that you do get put on a list for counselling. Who knows what type it will be, or how long the list will be, but to go to a room with an objective stranger and just spill some of this stuff, or even just cry, is going to be a relief. I’ve got to sort it all through, figure out which boxes things belong in, and move forward. Or, not put it in boxes, as that’s never helpful, I know that, but learn how to be with it. Just, be.

[Another digression]

At last week’s brain class we did at least cover some useful material about worry. We can either do something about them, or we can’t. We can plan options to solve, or we can journal on the hypothetical and get it out of our minds… My worries about money and homelessness are mostly hypothetical, and so need to be treated as such. And I can plan to mitigate the impact of what happens if the hypothetical happens. Which brings me full circle to needing to inject fresh life into my business. It’s my worries about how this disease progresses, and being alone in dealing with that, that I can’t decide how to address. Because there’s not much to be done from a planning perspective, and it’s not really hypothetical either… In related news, I’ve told the two people on OKCupid who were seeming quite nice that I’m not ready to date. Well, I’m not. It’s not fair to inflict my basketcase reality on a stranger and say ‘please take care of me, I don’t want to do this alone.’ Which means that plan to address the aloneness is on hold. And seeing the friends seems to put me in bed for two days. So, really not sure what to do about that…Which brings me back to the holiday, and how will I manage…

Lots of circles, spinning around on each other.

In the fog.

Well. This is me. Screaming into the void. Let’s see what this day brings…

#magicalMySterytour

Thank you for reading xx