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Friday, 27 November 2015

Blatant Ignorance

*Foggy* Whoa....Sally has just got back from a short trip to the local shop and she is fuming! My tiny Foggy brain can't explain what has just happened so I'll let her explain! I can't wait to see you all again! I'll be back in January xx

Hello,

I am so angry and agitated. Perfect starting point for a blog post!

As you are all aware, I spent a whole year attempting to raise awareness of Myalgic Encephalomyelitis GLOBALLY. I was successful in educating a wide range of people. However, the people I encounter on a daily basis still don't have a clue.

I had just taken a break from working at home and taken a short walk to my local shop. On the way I bumped into an old family friend. Let's call her Lynn. She asked me how my new business was going and I said it was steadily building, but I need a part time job to be able to pay my bills. I told her that there don't seem to be many temp jobs around and that most temporary jobs at the moment are retail. I explained that I can't do retail as it involves standing for long periods of time or lifting/shifting stock, something I can't do. She said that at Christmas time there are lots of bar jobs available and why don't I just do that? I explained that I couldn't because of the standing for long periods of time. She told me to push through it. I said 'M.E. sufferers can't push through it, it's not how M.E. works'. Lynn replied, 'I've read up all about it, all they have to do is push through it and get
Me - educating
a positive attitude'. Apparently, if I 'put my mind to it' I can do any job. I was speechless. I could have pointed out to her that not only do I have M.E. but am a M.E. advocate and educate people on the true nature of M.E all the time. But I didn't. I didn't swear at her (I wanted to) or argue (I wanted to), I just let my very expressive facial features tell her what she could go and do!

Let me point out that 6 months ago Lynn didn't know what M.E was and said that she hadn't known there anything wrong with me. I think her idea of reading up on it was reading the Daily Mail's inaccurate reporting of the condition. I have spent 3 hours a day for the past 6 weeks looking for a small part time job to tide me over until I have built my multinational conglomerate. Unfortunately, I have been unable to find any work which suits my energy levels. I thought looking for a basic admin role with part time hours would be simple. I was so wrong. My willingness to work and frustration at not being able to find anything suitable completely contradicts the comments from Lynn. What is especially annoying is that she does not appreciate that I am currently working very hard setting up my business. I am not lazy.

I often give the impression that I don't encounter negativity regarding my health. I like to keep Foggy light, engaging and informative. Please don't be under the illusion that I don't have ignorance thrown in my direction on a regular basis. Ignorance from colleagues was a small factor in why I left my previous job. I constantly had 'the face' from a few members of staff. It was demoralising and made my working life extremely difficult. Maybe I should have worn a pretend plaster cast so people could see there was something wrong?

Unfortunately, the only people who are paying attention to raising awareness of Myalgic Encephalomyelitis are the people who like to learn new stuff and treat fellow human beings equally and with respect. I could spend a morning giving a public awareness event and be well received, and then pop into my local shop on the way home and be confronted by ignorance.  Ignorant people have no inclination to learn and just stick to their own beliefs and misconceptions. Incredibly frustrating but that is the way of the world.

Love,

Sally xx

Wednesday, 18 November 2015

Bits and bobs

Morning!

I have insomnia (funny that!) and am taking the opportunity to update you on what has been going on lately, and what is coming up in the not too distant future.

I am going on the radio on the 30th November (around 7.25am)! EEK! I will be going into the BBC Radio Solent Breakfast Show studio and will be a 'Julian's People' person. It is a short spot, but will give me the chance to recruit people to help with Foggy's next adventure. I'll see if I can get a link so you can listen to it if you want to. Alternatively, visit their website:
http://www.bbc.co.uk/programmes/p001dpqb

My new business is going great guns. My M.E. body still hasn't got used to the new routine yet (not that I have managed to create one with the building works at home). Working combined with networking in the evenings is not conducive to a regular routine. I can set my own hours and take breaks when I want to so it's all good. Speaking of networking, I attended a business network event last night and got tips for my own business, but also for Foggy's charity work. I met a lot of lovely people, some of whom have offered to help with a few issues I am having....podcasts, intellectual property and logo's to name a few! I MIGHT also be going on another local radio station.....maybe...fingers crossed. Spreading the Foggy love as far as possible!

I am in, desperate, need of a graphic designer. I need a Foggy logo for the next campaign. I have asked three graphic designers to design one so far and have
had no luck with the results. I had contemplated drawing/scanning my own logo but was ruthlessly informed last night that the end product quality would be rubbish (charming hee hee) There is no budget. I cannot pay you. So, if you would like to help Foggy's campaign and design a simple, eye-catching Foggy Logo for FREE please do get in touch via mefoggydog@gmail.com.

I am off to the University of Winchester Library tomorrow to give an awareness talk. I will be highlighting how they can support users with M.E. Spreading the word far and wide, as usual. I will be talking for around 45 minutes with questions afterwards. I can feel my glands swelling up with tiredness just thinking about it! Maybe having a 'bad M.E. day' will be a good thing - show non-sufferers what it is truly like to be a mild sufferer. 

Finally........ Foggy has got a new website! It will be going live on the 29th November, ready for the radio interview the following day. Thank you very much to Brian for creating and running Foggy's World Tour website during the last campaign. The baton has now been passed to James Cooper. Read his guest blog post here http://mefoggydog.blogspot.co.uk/2014/11/guest-blog-from-james-moderate-me.html James has been extremely patient and supportive over the past few months. I have been very particular with what I want but with no budget! I love the new website and I hope you do too. So, check out mefoggydog.org and fall in love with Foggy all over again! There is a 'coming soon' screen displayed at the moment with an exciting countdown, ticking down the seconds until Foggy comes out of his coma.

Please note that the next campaign doesn't start until mid-January. 

Take care and lots of love,

Sally xx


Tuesday, 3 November 2015

Unhelpful

Hi,

Like many other M.E. sufferers, I read an article in a national newspaper on 28th October that literally made me gasp out loud. This headline came from the Daily Mail, but the story was covered by most of the national papers. The ME Association discussed the coverage in the Daily Telegraph. See the
link below: 

ME Association response to media coverage of the PACE trial.

I am sick, sick of conflicting research and being made to feel like it is all in my head. The contrast between the Institute of Medicine's Systemic Exercise Intolerance Disease (SEID) research and this PACE trial is astounding. How can sufferers be both intolerant to, and helped by, exercise? The difference just doesn't compute in my tired and weary brain.

I'll admit, I steer clear from reading papers from the latest research. I am not a doctor and do not understand most of the medical terminology. However, I do keep track of any 'progress' made. Since starting Foggy, it has become clear to me that many sufferers read every scrap of news and research, in the hope that they can see light at the end of the tunnel. They also discuss findings as if they had undertaken 7+ years of medical training. Most of us haven't. I don't have the energy to pretend that I have an ounce of medical knowledge. I also don't have the cognitive strength to read report after report, desperately seeking out something positive to cling on to.

I have been sent the following links by a fellow sufferer. Now I know that the PACE research has links to health insurance companies, I don't think there is even a grain of reliability/truth or medical advancement in it. What about you? Trial by Error    No it isn't all in your head.

My own personal mantra, and something I tell fellow sufferers if they ask my advice (I stress that I am not a doctor but speak from my own personal experience), is to do the amount of exercise that is good for YOU, just to make sure your body doesn't go to sleep. That could range from simply getting out of bed or walking up a flight of stairs to taking your dog for a 10 minute walk. M.E. is very
individualistic and so no one can tell you how much exercise you can manage.

I have remained 'active' throughout the 7 years that I have had M.E. At times, during a kind of remission, I was able to do more activities before exhaustion hit. However, this does not take away the fact that exhaustion ALWAYS hit at some point during the day. At the present time walking Patch for 20 minutes is enough to make me feel exhausted by the time I get home. This morning I have done 10 minutes of housework, Pushing a hoover for 5 minutes and cleaning the kitchen floor exhausted me temporarily and I had to have a rest break. Like many other sufferers, gentle exercise has not reduced symptoms or 'cured' my M.E.

My biggest fear is that this PACE study, and the subsequent press coverage, will YET AGAIN negatively impact public perception. I feel the hard work I did last year to raise awareness has been set back. If M.E. sufferers can't get their heads around the latest research how can we expect Joe Public to ever understand?

Love,

Sally xxx (and Foggy doggy snogs)