Read more here.
And we thought we just had to worry about the PACE Trial…
Read more here.
Woohoo! As discussed in my previous blog… I’ve now received my Certificate of Compliance from the IAB!
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.
Well first of all, where the hell did that month go to? I can’t believe that the last proper piece I wrote was on 31st May, that’s the longest gap since I started the blog!
I am so sorry, I hope you didn’t think I was being rude, slacking off or taking you guys for granted because that is absolutely not the case. Where to start…
Well, I’m not sure if I’ve mentioned it before or not, (I don’t think I have) but around last September or October I committed to organising a huge 70th Birthday bash for my Father-in-Law and his twin sister.
We were all at my husband’s cousin’s birthday and as the nectar of the Gods flowed we came up with this idea that it’d be great if I put on this event for the whole extended family as a reason to get together for something happy. I think we had all been to more funerals than social gatherings over the previous couple of years and this seemed like a way of bringing back some of the joy and youth of family for everyone. And I think Mr M.E. (I’ll have to come up with a new name for him now that I know someone else is using it!) thought it would be a good happy project for me to tinker away at to keep me busy-ish and happy.
The budget was set, the plan was hatched and off I went. Tinker… plot… giggle… rub hands at own brilliance.
The Party, with a capital P was planned for 23rd June and I went all out to make it the event of the decade for the whole family. I hired an amazing venue, caterers, decorators, games machines company and a baker of the most amazing cakes! Everything was going great and as is typical with my Type A, hyper responsible, attention to detail nature, nothing was overlooked, everything was going to be perfect.
The budget spiralled out of all control but I was let off the hook for that after quite a serious chat with Mr M.E. and a promise to ‘be good’ for the next two years. All holidays and Christmases cancelled but it was to be totally worth it. Thank goodness for his kind, generous and generally yummy nature!
I had one or two minor panics about it all, I don’t mind telling you.
As anyone who has ever planned a big party or reception will tell you, try as you might to make sure everything is dealt with in plenty of time, details, meetings, phone calls and emails all still need to happen in the final few weeks before the event. Some suppliers are in such demand that they simply cannot think more than two or three weeks ahead and just deal with what’s immediately in front of them.
I had told all my suppliers that I have ME/CFS and begged them to let me rest in the run up by finalising everything at least a month before, but of course none of them understood and smiled wanly when I tried to explain….So I was still dealing with last minute details even in the week of the party itself. I was getting more and more tired in the run up to the event and even seriously said to Mr ME that I might not make it on the night. But he just couldn’t entertain the idea that I wouldn’t get to enjoy something I had worked so hard to put together by not going to it.
On the day of the party itself I went to meditate for half an hour after getting my hair done (which of course took twice as long as they said it would in a noisy hairdresser) and I promptly fell asleep. I was so tired before I even got there but I knew no one would know how bad I felt so I just pushed through. I know this is bad to say out loud OK, and some of you may be shocked enough to stop reading my work but if someone had offered me something ‘naughty’ to keep me awake, at that point I would have gratefully accepted it, such was my feeling of “eff, I am so exhausted, I don’t want to be here”.
As technically the ‘hostess’ of the party, I was ‘on’, buzzing round tables, attending to little glitches, ensuring the timing of cake cutting, food etc was adhered to so by 10pm I was almost delirious with fatigue. I know people must have thought I was tipsy at that point but I’m pretty sure I’d only had three drinks then. Again, I’d warned the venue that there would be a point in the night when I would seem like I couldn’t keep it together and understand/communicate with them but as wonderful and helpful as they were, I don’t think they got it.
That was the point at which I knew I either needed to go home and die quietly or start really hitting the alcohol to make it to the end. I did the second one. Of course, I don’t have a great tolerance for alcohol any more like most of us with ME/CFS but it is the only way I can get through that kind of exhaustion and pain.
The party was a great success, by the way. I had the venue turned into an indoor enchanted garden, with ivy and wisteria hanging from the central lighting, bay trees with twinkling lights set amongst the tables, which had little trees with birds and butterflies on them. There was faux topiary dotted around every corner. There was a sweetie and popcorn buffet along with an awesome hot buffet, a photo booth, and games including a giant Scalextric and a life-sized game of operation. Everyone raved about it and the place was packed ‘abuzz’ all night. I’ve attached a couple of photos so you can see. I am pretty pleased with the results, if I do say so myself.
I got to rest on the Saturday, but, as my parents had driven over 400 miles to be there and were going home on the Monday, I needed to drag myself out and put on a brave face on the Sunday. I didn’t want to let them down or seem rude or ungrateful after they had come so far and my dad outdid himself in terms of how late he stayed. I’ve generally gotten to the point in my diagnosis where I don’t usually make myself do things that I know will lengthen a crash or cause extra suffering but when it comes to my mum and dad there is still a visceral need to please and a fear that they think I’m ‘lazy’. That Sunday was one of the hardest things I’ve had to do in a long while but I would have felt rotten if I’d not seen them before they left.
My knees, ankles and feet did not stop throbbing for three days. My feet were so tender that I didn’t even want to put socks on, never mind shoes.
I used my whole month’s supply of dihydrocodeine in about two and a half weeks leading up to and after the party. I’m skating by on neurofen and lots of antacids now until I pick up my next prescription…. I know I could ask for extra but I’ll be damned if I come to rely on opiates to live my life. I’m so para about the ‘opioid crisis’ I keep reading about in the news.
I’ve just entered week two of recovery and I’m doing OK. I definitely feel better than last week and touch wood I’ve not had a lot of brain fog. Just a really bad upset tummy, headaches, exhaustion, lead limbs, pain and mad cravings for carbs, which I’ve mostly resisted but not entirely (grins).
So that’s it then, I hear you say…… well not quite….During this busiest of months, something else happened. I got an unsolicited email from a lady on the 2nd June, a mere three weeks before the party, asking me to help with her bookkeeping. It sure did put some extra pressure on but I’ve got such great people supporting me, like Rachel, my mentor, that I couldn’t ignore it.
I’ve not properly spoken about this yet but it is on my list of topics to write about, so I will go into more detail in another post but basically, it is my ambition (as I’ve discovered over the last six years that employers are shady as F) to work from home by starting my own small bookkeeping business. I had not yet started as I really wasn’t sure I was ready and didn’t have a lot of confidence about how the heck to start but I had mentioned this ambition to a lovely woman, called Fiona, that I’d met at the Millions Missing Protest way back on the 12th May (International M.E. Day).
We’d had a great chat and she suggested I become an editor or proof reader for financial publications at home. I don’t know if you remember, but I wrote off to the company Chiappe, as she’d suggested and said I would get back to you all about how it worked out? I figured, nothing ventured, nothing gained, financial diversity in a gig economy and all that but I never did hear back from them so there was nothing to report.
Well anyway, I’d told Fiona at that time that I was ever so slowly working toward my own plan to regain some dignity, get off benefits and out of the poverty trap into some semblance of financial independence and she must have taken it on board because the lady who contacted me was a colleague of hers.
Much the same as the Chiappe thing, I took it as a sign from the universe, trying to push me in the right direction and I grabbed the opportunity to kind of start my own small business. I haven’t got any paying work yet and there’s definitely some stuff I need to work out but I inch ever forward my fabby M.E.ers
To be continued…
What a load of absolute bollocks. Real CFS/ME cannot be cured by diet, exercise and mindfulness – utter shite! More like she was misdiagnosed and then ignored by her doctors who used the diagnosis as an excuse to continue to ignore her evolving symptoms and put any changes or new things down to it. I know that’s what happens to me.
It’s so funny (not funny) how I’ve been diagnosed with a neurological condition but never been referred to a neurologist, never had a CT or an MRI.
The ‘treatment’ for people like me is an effing joke and I’m sick of trying to ‘be positive’ and nice or diplomatic about it.