I promised a couple of weeks ago and again yesterday that I would write a bit about my plans and what I’ve been up to so this post is kind of called ‘about the future’ but first some context.
When I first got ill with CFS/ME, like a lot of people, I tried like hell to hold on to my ‘past’. I buried my head in the sand and I wouldn’t let go of my life. My career, which paid extremely well, my outdoor activities, my house-proud ways, well you know the story, we’ve spoken about it before. The point being that those things were my identity (when people asked who I was or to tell them about myself I always led with my job) and that identity was my future, or so I thought.
Then after trying repeatedly to go back to work in some form or other, after failing so miserably that my professional reputation was somewhat in tatters (through no fault of my own btw), after a very long time and a downward progression of my symptoms and increasing limitation of my activities, I gradually let go of everything, I let go of my future.
I was, in fact, pretty sure I didn’t have a future at all at that point. I was bed bound on and off, much of the time then in the depths of despair and depression as my financial and retirement plans were scuppered, home buying plans gone, child rearing plans gone, travel plans gone, ambitions squashed, even bloody picnic plans were scuppered!
Try as people might, I don’t think anyone who doesn’t have this disease can really get their heads around how all-encompassing it is. I am reasonably certain that people close to me are sick of hearing it, in EVERY SINGLE discussion, everything comes back to how it relates to my CFS/ME. It affects EVERYTHING.
But there is a reason for that; I have again recently read research papers comparing our symptoms (what they call the disease burden in scientific circles) quality of life, and the severity thereof to Cancer, Aids, Lupus, End Stage Renal Failure and MS, all of which are terminal but we live on and on through it, after a fashion, often feeling like we are on the edge of dying, sometimes for decades.
But anyway, back to the point.
Living without a future is not living at all. Giving up all your plans, hopes and dreams of the life you thought you would have is a lot to come to terms with and it takes a long time. In my case, because I am quite stubborn, a very long time.
Many, many times I was utterly suicidal and I begged David (Mr ME) to let me die or help me die. And there have been just as many times when the only thing keeping me alive was knowing that I couldn’t ‘exit’ because it would destroy him. I don’t know about you guys feelings and your lives but for me those days have been pretty much as dark as it gets, lying in a darkened room, unable to bear light or noise, hardly able to stay awake for a few hours at a time. Dark.
So, two summers ago, after seeking some help to cope with the emotional and psychological turmoil the disease and diagnosis brings, I started thinking about trying to find my ‘new normal’. This is a cheesy shrinky phrase but when you understand the meaning behind it, it does have some value, well it does for me at least.
This, by the way is the much-touted CBT that they go on about as a treatment for CFS/ME – they don’t treat you at all as such but the good ones try to help you find ways to cope with it and maybe manage it a little better. It’s the same sort of counselling that’s offered to people with other serious lifelong conditions. That’s it. It’s another common misconception that really pisses me off, which you probably already know if you read my other work.
Anyway, I started thinking about trying to figure out a plan for a different kind of future and a new identity. In a way, it took me back to the core of who I am as a person and the things that are important to me. Try as I might to think about meditating and being one with the universe for the rest of my life, it just wasn’t for me. I wanted to be able to work and I wanted it to be in something reasonably brainy because that makes me feel good about myself….
I realised that I couldn’t work outside my home, well, not without serious adjustments like a quiet room and a place to lie down so I tried to figure out who would hire me, working from home, sustainably with my condition.
It turns out no one.
I went for dozens of jobs and interviews and despite being one of only about 50 people in Scotland that could do what I did (at that time) as soon as I mentioned working from home, flexible working or reasonable adjustments for my disability – blammo! Someone else got the job. I was always down to the final five or the final two but no one in financial services wants to offer working from home for a disability, no matter what the law says. I gave up on that idea and in frustration I started calling recruiters out on their frigging illegal BS.
Anger does not help my exhaustion levels so that’s when I hatched THE PLAN. In May 2015, I realised that it didn’t matter if it took me five years or ten (because everything takes forever when you have CFS/ME) if I had to live on this planet for another 40 or 50 years, I was going to work towards working for myself from home. It would at least be something productive to focus on, on my good days.
(I totally screwed up on that when I chickened out on my plan and tried to take a part time job last October – it was a complete disaster and I should have stuck to my guns! However, I’m back on track now so that’s all that matters).
I figured (see what I did there?!) that as numbers have always been my friends, and my speciality was analysing accounting transactions and regulatory compliance; bookkeeping would be a good call. Tons of people need bookkeepers, right? Hairdressers, bakers, joiners, mechanics, handymen… there are lots of small independent traders out there that are amazing with their practical skills but hate keeping the paperwork straight. People like me, ‘little’ people just trying to make a go of it.
Yes. This was perfect!
So, I looked around for a course and some exams I could do, to legitimise myself and get the brain working. Even though CIMA is not beyond my capabilities and the AAT is very popular, I settled on and signed up with the IAB (International Association of Bookkeepers). In part, this was because all the study is at your own pace, at home (even the testing/case study papers) and secondly because the courses were designed to teach not just technical knowledge but also how to use the popular software package, Sage.
I was nervous, because I’d been having a lot of cognitive problems as part of my CFS/ME and I simply didn’t know if I would be able to take in and retain the information. I also didn’t know if the physical and mental strain of the study would knock me out and send me back to bed… and sometimes it did.
I plugged away a few hours here and there over the course of the year and eventually last July I passed my level 3 qualification in Computerised Accounting for Business. It was roughly equivalent to having done an A level in accounting and it allowed me membership of my professional governing body.
Yaas! Bitches! July 2016 qualified – start business!
I suddenly realised that all the knowledge and practise cases didn’t give me the confidence I needed or any real-world experience. I hadn’t realised at all how much my confidence had been knocked by the previous five years and how anxious I had become about everything. Knowing how to do some bookkeeping did not mean I knew how to run my own business. I did not, in fact, know where to start!
I kept asking other people who’d started businesses what they did and what I should do; “oh it’s easy” and “just do it” they would say with no practical advice. I went back to see my counsellor/hypnotherapist to try to get over the hump, all to no avail. I was deflated and defeated. The lack of a future and the depression it brings loomed large again.
It is hard enough to live with CFS/ME without every god damned single thing about wanting to be a productive member of society being an uphill battle. Could the universe not maybe cut me just a little slack?!
I contacted a few accountants to ask about work experience but no one ever got back to me so that’s when I slipped off my path and started applying for bookkeeper/accounts assistant roles. No one wanted to give me a chance because I was newly qualified and had a disability…things were not looking good.
I also noticed that everyone wanted someone who could do bookkeeping and payroll but I didn’t have the payroll knowledge – that’s a separate course and more money that I just didn’t have.
One good thing happened during that time, which indirectly inspired me starting this blog. After an in-depth conversation with a nice Director at imultiply recruitment, when he said he couldn’t put me forward for a role, based on my lack of experience (despite qualifications and almost two decades of transferable skills); they asked me to write a two-part blog for them about having ME and trying to work/get work. They wanted to help me raise awareness and said the piece would act as an advertisement for anyone who might consider hiring me. I wrote a very direct and raw piece about the role of recruiters in facilitating disability discrimination. Although they sanitised the first part quite a lot and what was put up on their website did not have quite the bite I’d intended, when I pressed them to keep the second part raw and real, they agreed. Despite nothing coming of it, it was a good experience and it definitely left me wanting more. More of a voice and made me think about wanting control over my words.
Three months after qualifying, in need of something to make me feel like I hadn’t just wasted a year and a ton of money, and hoping it would be another good experience, I took the job I should never have taken. It was not doing actual bookkeeping (just overseeing/financial management) and not at home, with no adjustments available for my condition. Three months after that I quit and crashed. That was January of this year.
After a month spent in and out of bed, struggling with few spoons and lots of symptoms; trying to get back into a routine and beating myself up about the rotten mistakes I had made, I was trying once again not to be defeated,
David kept banging on about me writing a book. I thought he was just biased and mad, I am not that good a writer and I argued that it was just too big a thing to think about. After repeated prodding I started this blog, with a view to accumulating the words over time. David conceded that this was a good ‘solution’ to his desire to have me be a writer.
After another month spent getting up most days but really struggling to stay up or do my baseline, I remembered my plan again and started thinking about what other courses I should do, eventually settling on the equivalent payroll course to the one I had already done.
I am still working my way through that and probably will be until April next year but in the mean time I have applied for my practising certificate from the IAB, worked through their programme of compliance (joining the AMLCC, registering with the ICO, getting Professional indemnity sorted out and a ream of other things). I also went to help my very first client. It wasn’t a proper ongoing job but it was a start and I learnt a lot from it…
Ready for my next one.
Ready for my future. No matter how long it takes.