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Thursday, 26 April 2018

Hopes and Dreams


Foggy is on his way to Melbourne to meet up with the Emerge Australia gang. He can't wait to see the lovely people who help so many of the ME Community in Australia. While he is away from Foggy HQ, I am busy organising events, doing promotion, and the usual awesome Foggy stuff that he gets me to do ;)

You would think that the success of ME Foggy Dog would make me happy, you may be surprised to learn that I have got a very low mood today. There are a few reasons for this:

  • I have many hopes and dreams for ME Foggy Dog, my brain gets excited and makes plans but my M.E weary body puts its foot down and forces me to stop. I have been having a few meetings with talented business people this week and have been swept away by their enthusiasm and support. There will be changes in the future but I have to keep reminding myself that support and encouragement will not help at the coalface.  It comes down to just my ME brain and hands to do the work. My own insecurities are holding me back, I think, and I end up beating myself up for having insecurities! Doh.
  • I had to fill in a few HMRC income forms today. I realised that, because I can't work many hours per week (up to 25 hrs), my income for 2017/18 was abysmal. I am not on disability benefit but do get a disability top up with working tax credits. I get very frustrated that I can't work as hard as I would like. I meet business people who can work 60 hr weeks and their bank accounts reflect that. I work as hard as I can (with rest breaks) but just can't seem to get my head above water. I am very good at what I do but don't have the energy or brain power to network regularly/meet fellow business people. I have put so much effort into my business, I have a few plans for the future, but it would be a shame if it had to close. I kind of feel like I don't have a choice about being self-employed. I personally don't feel I am sick enough to qualify for PIP because I CAN work a limited number of hours. If I'm not on benefits and I can't do paid employment because the hours don't suit my fluctuations then self-employment is the only option....and if that isn't working out......I'm stuck.
Having M.E does not stop sufferers still wanting to push themselves and have achievements in life. I wish it did, I wish I didn't want to succeed in life. In the same way that having a disability doesn't mean I like wearing beige, listening to Sad FM and knitting (sorry if you are a knitter! I couldn't think of anything that is considered boring), I think once you become 'disabled' people just assume that that's it. You've become a disabled person, once you have that label it is assumed that your ambition has gone too.. There are so many M.E people following Foggy who have a wealth of skills and talents that are going to waste. I've talked to so many people who's passion and zest for life has been dimmed but not extinguished. They live in hope that they will be able to return to their passion, whatever that may be. I hope that they do get there again one day.

I've said this before in previous blogs, I feel like a failure most days. This is due to a combo of PTSD, anxiety, having M.E and being a 'not fit for purpose' people-pleaser (I often fail in pleasing people because I don't have the energy!).  At least once a fortnight, someone tells me that I am strong. That I can cope with anything. Sorry to shatter the illusion but it's all an act. It's a case of making the best of a bad situation. The act is exhausting. 


Sally xxx
(and Foggy OBVIOUSLY)

Tuesday, 10 April 2018

Work with M.E....Next Chapter


I wrote a blog about M.E and work way back in 2014 when I was in full-time employment Work blog. How times have changed! At the time, I couldn't be 100% truthful as to the full extent of my inability to do this library job as I didn't want to lose my job! I left that job due to 'working relationships' (read into that what you will) but with hindsight, I doubt I could have kept up full-time working for much longer, so leaving 2 years ago was a really good move for me.

So, now I am the proud owner of Words Angel (UPDATE  -Business closed in Sept 2018 to concentrate on Stripy Lightbulb), a small business that does social media marketing and proofreading. Two things I can do from the comfort of my own home, and most importantly, to my own schedule. On average I work 20 hours per week but these hours are split into chunks across the week. For example, I might wake up early and do an hours' work between 6-7 am, rest for a bit and have breakfast, do another hour 9-10 am, take a rest break and do some mindfulness. I'll then fit another hour in before lunch. I'll rest for a couple of hours after lunch (usually watching the Ellen Show....she brightens my day). I might do an hour in the evening to finish off a
project....but that's how I do 4 hours of work per day. 

This type of working would not be possible if I was employed part-time to do the same amount of hours for another business. Inflexible set hours wouldn't work for me as working patterns tend to come in blocks of 3-4 hours. My weary M.E brain and body can't do fixed chunks like that. Work, rest, work, rest, work, rest, work is how I roll.

I was recently having coffee with a business friend, I was moaning about my lack of money and that my business is still building. He asked why I couldn't find myself a small part-time job to keep money coming in. I said to him that as much as I'd love that, it's just not possible. M.E fluctuates. I have no idea when I am going to be feeling so poorly I can't function. Our M.E bodies force us to cancel plans regularly, that includes having to take sick days when our symptoms have flared. I had so many warnings from Occupational Health about my level of sickness it became a constant stress that I didn't need.

2 years ago, I was terrified of admitting that I wasn't able to work full-time. I didn't want to be defined by my health. I still had hopes, ambitions, and drive. Unfortunately, I job hunted for 6 months initially without success. Despite being a postgraduate and having decades of experience, no one would employ me. So, I took my situation firmly into my own hands and became a sole trader with my own business. I remember reading a 'Building a business for Dummies' type book for hints and tips. On the first page, it said that if you weren't in the best of health you shouldn't bother trying to set up your own business as it takes hard graft and a lot of working hours per week (the book said 60+ hours). This is true. However, I have met a lot of disabled people who find self-employment is the only option. I don't want to build a huge digital marketing agency, I'm happy as long as I pay bills and have some disposable income. I'm constantly having to rein myself in as having M.E doesn't stop me being ambitious! However, 12 years into this M.E hell and I am learning to accept my limitations. I was beating myself up yesterday whilst chatting with a friend, she stopped me and said '...but you're DOING it!'. Yes - I am.

I'll never forget my former boss taking me into her office and saying 'I'm worried that you are living to work at the moment'. That was 6 months before I resigned, she was so right. I was resting all the time I wasn't at work to make sure I able do my job effectively. That's not a lifestyle worth having.

I wonder how many of Foggy's Followers are in a similar situation to the one I was in 2 years ago. I wouldn't be surprised to find it's a common problem for mild sufferers.


Sally xxx
and Foggy (OBVIOUSLY)