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Thursday, 26 April 2018

Hopes and Dreams

Hi,

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. 

Love

Sally xxx
(and Foggy OBVIOUSLY)

2 comments:

  1. I feel your pain on this one. The hardest thing I am finding getting my head around is that I can’t do the work that I used to. I work full time, enjoy what I do, but it is not the higher paying, higher responsibility job I had in the past, but just can’t do that type of work anymore.

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  2. Oh sweetie, I can relate. I'm so sorry that you are faced with all this. You are brilliant and brave and strong. But the reality is that all those things have an unwanted dimmer switch. I hate to say that I have given up on almost all my dreams. Things that felt possible just a few short years ago feel like Mt. Everest now. I also understand about the people pleasing. I guess I should feel grateful that I'm almost too exhausted to be bothered with it 😉. Regarding disability benefits - have you actually applied? Given the level of function you are at I can't imagine how you couldn't be accepted! If the system there is anything like the one here, it will probably be a frustrating and exhausting process. I highly recommend hiring someone who knows the system to help you. My brain capacity was so bad when I applied that I had to get help! Hugs to you and Foggy ❤️.

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