Enter your email address here if you want to follow Foggy via email

Wednesday, 19 September 2018

Allergic To My Tumble Dryer!

Hi,

Having M.E sometimes turns me into a super sleuth. Just call me Miss Marple! Trying to work out exactly what has caused a symptoms flare can often be a fruitless task, purely because of the complex nature of our illness but sometimes the cause of discomfort can be nailed down and prevented.

Many M.E patients have sensitivities to sound, noise, chemicals, and odour. My own sensitivity to odour has been heightened over the past year or so. In particular, sensitivities have flared dramatically when I am washing clothes and bed sheets. I am going to give you a timeline of my investigations to show how my super sleuth conclusion came about!

5 years ago - My tree pollen allergy flared and I had to stop drying my clothes and bed sheets outside on the washing line as the odour caused a reaction in my respiratory tract and I had breathing difficulties. So, drying everything on clothes airers indoors began. Bed sheets were dried in the
Me (Miss Marple) 😀 
tumble drier though just for speedy 'get them back on the bed' turnaround. Allergy - prevented.

1 year ago - Breathing difficulties, sinus problems, itchy/watery eyes started whenever I put on freshly washed clothes or slept in just-washed bed sheets. I realised that my parents had recently changed their brand of washing liquid so I started buying my own hypo-allergenic brand. I had to try 4 brands before I found one that I didn't react to. Problem solved.

4 months ago - We needed a new tumble dryer. We bought a new condenser tumble dryer. As it was a nice hot early summer I was able to hang the sheets in our hot conservatory and they dried in a couple of hours. Perfect! Allergy-risk free!

3 months ago - Breathing difficulties, sinus problems, itchy/watery eyes re-started but this time only when I was in bed. What was going on?! It was a rainy week and I had used the shiny new tumble drier to dry my sheets (more of that in a bit) I wondered if my allergic reaction was because my head was in such close proximity to a just-washed pillowcase and duvet cover. So, maybe I was still allergic to the hypo-allergenic washing liquid?! I changed to Eco eggs that have zero chemicals in them. Allergies disappeared again. Great!

1 month ago - The really hot summer came to an end and I had to start drying bedsheets in the tumble dryer again. Breathing difficulties, sinus problems, itchy/watery eyes reappeared. For goodness sake! Has anyone else got a condenser tumble dryer? Have you ever sniffed inside the drum? Ours smells metallic/musty. The exact same smell that is on my sheets at night after they've been washed.

I Googled to see if anyone else had the same problem. I didn't see anything about allergic reactions but lots of people in forums have said that they also notice a metallic/musty smell inside their condenser tumble drier that they found unpleasant. Not just me then!! Well, apart from the allergic reaction thing!

If any of you are, like I was, driving yourself crazy trying to work out what you are allergic to, sometimes you have to think outside of the box!

The Callow house will now look like a Chinese laundry as I attempt to avoid pollen of various forms and the demon tumble dryer!

What a palaver!

Love,

Sally
(and Foggy OBVIOUSLY)
xxxx

Tuesday, 11 September 2018

Future Plans with Stripy Lightbulb CIC

Hi!

Team Foggy and my new business Stripy Lightbulb's Non-Executive Director Yvonne had a great time in London yesterday. We went to the London School of Hygiene and Tropical Medicine to see the Cure M.E/M.E/CFS biobank team.

The main reason for the visit was to talk about Stripy Lightbulb CIC, my new social enterprise. Community Interest Companies work for the benefit of communities. In our case, the community involved is the M.E/C.F.S community. As it says on our new legal documents, Stripy Lightbulb CIC works for the 'benefit of the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (M.E/C.F.S) patient community'.

Our community will benefit in 3 ways:
- The stigma surrounding the illness will lessen as a result of the training and awareness-raising
- The support patients receive from participants of the training will be more beneficial and appropriate to the condition.
- Surplus will be put towards M.E/C.F.S research funding, of which there is a severe shortage.

These points are made in our legal documents in our statement of activities and related benefit.

The Cure M.E team meeting came about because I want them to be the
Team Foggy, Yvonne, and the Cure M.E team.
beneficiary of our 'surplus'
(profits). After meeting the team yesterday, I am very happy and am 100% sure that I made the right decision. I had asked to be able to have info about their latest research on the new Stripy Lightbulb website, for additional information but also to reinforce what I was teaching and to add weight to the CIC. Cure M.E have offered support and even more assistance than had been anticipated and I am very grateful for that.

Foggy and Stripy are two completely separate entities, Foggy is for advocacy and Stripy is for education. Both have the same goal - to raise research funding. I'm going to try and not mix the two too much in the future as they both have different audiences and objectives, but I want to let Foggy's Followers in on the excitement that is going on at the moment!

Foggy came along for the ride as some of his fundraising, via the ME Association, ended up at the biobank. He wanted to take a look around! He also loved having his ego massaged a lot yesterday.....the Cure M.E team were well and truly 'Foggy'd'!

In a nutshell, Stripy Lightbulb CIC will offer online M.E/C.F.S training for healthcare/education/business professionals. All of whom have a duty of care over M.E/C.F.S patients.

The biggest tasks ahead are getting these professionals to recognise the need for training and also pay for it! Paying for it = research funding.

I need to say thank you to Foggy Follower Claire Thomson. Claire is an accountant. Claire has been a lifesaver this week. Claire has been able to transform my attempts at working out figures into a cash flow forecast. Thank you Claire and lots and lots of Foggy snogs coming your way xxx

As I mentioned on Twitter this week, thanks also have to go to James, my website guy. Fortunately, James now knows me, after doing Foggy's website for over 3 years. he knows how my brain works and also understands that I know barely anything about I.T! Just because I WANT an e-learning platform,  doesn't mean I know anything about them!! James has been very helpful with support and advice. Together, I'm sure we will do a fantastic job!

That's it for now. Apologies if this blog is a bit rambly, I was awake at 2.37 AM....I was clearly over, over, overtired yesterday.

Love,

Sally
(and Foggy OBVIOUSLY)
xxxx

Sunday, 2 September 2018

Summer Is Over...Back To Work

Hi!

Foggy is on his way back from a spa retreat (AKA... teddy bear hospital being restuffed) and has enjoyed a thoroughly lazy summer. 

Me? I have enjoyed taking my foot off the pedal with Foggy's social media, absence has given me a little bit more brain space to get other stuff done. I have definitely not been 'resting' since the beginning of July.

This blog is just a bit of an update about stuff that has happened since July and a little bit about future plans.

M.E Foggy Dog is now a social enterprise (sole trader format), any surplus (profit) we make will benefit the M.E community. I haven't worked out who the exact beneficiary will be yet though. Foggy's Followers probably won't notice any difference, our fun, advocacy, and shenanigans will remain the same. I have big plans for the 'brand', those plans are purely dependent on funding. We'll have to just wait and see!

I am in the process of setting up a Community Interest Company (C.I.C) social enterprise. Again, for the benefit of the M.E/C.F.S community. I have decided on the name, the domain name has been secured, I have 2 directors (EEEK) and the legal forms are winging their way to Companies House/HMRC as I type this  Any surplus (profit) from this business (in year one initially) will go to the London School of Hygiene and Tropical Medicine  https://www.lshtm.ac.uk/ for M.E research. Some of Foggy's fundraising for the ME Association went to their biobank and Foggy and I will be visiting the LSHTM in a couple of weeks' time with one my new Directors for a tour and to talk about the new CIC with staff. I was gobsmacked that they knew who Foggy was...it made my day!

I had originally planned on turning Foggy into the C.I.C but was advised by business 'experts' that business/education/health professionals won't engage with a soft toy. So, a second social enterprise was needed. Oh, I love to make work for myself!

I had to deal with a very stressful situation recently. Over the past 9 months, I have been told by a range of people that a couple of people have been taking credit for my advocacy work with M.E Foggy Dog. This lead to a number of very stressful conversations that caused my M.E to flare dramatically. Let me make it 100% clear. I am M.E Foggy Dog, no-one else writes blogs/articles, posts on social media, pays out of their own pocket for marketing stuff, organises his itinerary, and all of the background stuff that no-one sees. I have to use energy I don't have to do what I love doing and it's upsetting when other people try to take credit for it. I am now going to be very hot on Intellectual Property/Copyright stuff. You may notice that Foggy's logo now has 2 little letters on it. I have had a few people who have done physical challenges for me to raise funds for Foggy's Fund/ME Association, have had a few volunteers to help with events, and obviously have had people volunteer to be Foggy-sitters. I am VERY grateful for their support but, in terms of running M.E Foggy Dog, it's just me. Just me sat at my small desk, exhausted, creating engaging content to help raise awareness of our condition. I hate having to get serious about stuff like this but enough is enough.

I am very aware that many of Foggy's Followers withdraw from social media from time to time as it gets too energy sapping. With that in mind, can I suggest signing up to receive my email newsletters? I will be sending emails once every month or so with the latest news etc. Make sure you don't miss out ☺ Sign up via mefoggydog.org.

Foggy won't be doing a globetrotting challenge again until summer 2019. He has a couple of one-off special trips booked in though. He is off to California in October.....it's a secret.....he WILL be meeting Goofy - shhhh Foggy doesn't know yet! His sitter Kat is determined to finally make that bucket list wish come true! Foggy will also be heading to Lapland at Christmas to meet Father Christmas...WOW! Thank you to the many people who have contacted me with offers of wonderful trips for Foggy within the next 6 month or so but we won't be booking any globetrotting in until early next year.

September is going to be a busy month. In addition to the above-mentioned trip to London (exhausting but necessary) I am also meeting up with the local C.F.S NHS patient support team to talk about how they can improve (if at all) and support patients better. I recently met up with my local MP, he has suggested a round-table meeting with 10 M.E/C.F.S patients from his constituency to see how local provision can be improved. I don't have information about that yet so can't comment further. I'll be selecting people from my Portsmouth support group to attend the meeting. If you live in Portsmouth (UK) and either have M.E/C.F.S or are a carer/family member of someone who has our condition please join the support group via  this link.

That's it for now.

Love
Sally (and Foggy OBVIOUSLY)
xxxx


Sunday, 1 July 2018

Last Few Days

Hi,

Why does this always happen?

Every time a Foggy campaign comes to an end, I promise myself time off once the campaigning has come to an end. As you all know, I have mild M.E myself and this advocacy/campaigning malarky can be exhausting (on top of my usual/bog standard M.E exhaustion that we all feel every day). By the time each campaign ends I am usually frazzled and wanting to hide under my duvet for a few months.

Unfortunately, I must give off extra warm and fuzzy vibes in the last week of each campaign because every single new person I meet wants to connect, to set schemes up, help with fundraising, want me to write articles for them...the list goes on and on.

I AM NOT COMPLAINING. I am grateful for each and every opportunity that comes my way, I just wish these people had met me a few months ago. I am determined to have a break this time. I usually miss out on recharging because I get too excited and plough on with new adventures without resting. I need to rest. I'm just a little bit frustrated that the needs of my body are going to force me to postpone the opportunities that have come my/our community's way this week. I have explained the situation to these new Foggy fans and they understand and are happy to wait until September...phew.

People ask why Foggy's globetrotting has a start and an end point each time. One, it's my equivalent of a marathon. I am not Forrest Gump - running endlessly. Two, It's nice to have targets and not just roll along aimlessly. 

The gap in-between gives me chance to regroup, gather my thoughts and lay the foundations for what comes next. Explaining that to people who are disappointed that they only discovered Foggy in his last week can be tricky! But, there is plenty of stuff to look at. I have written so many blogs and articles for people to read and there are thousands of globetrotting adventure photos to look through. We just won't be actively campaigning for a bit.

Even now as I type this, I am thinking about the literature/promotional material I will need for an open day in the disability centre, where I hold our support groups, in a couple of weeks time. The open day is within my 6 weeks 'time off', but the date is out of my hands and I want to promote both M.E as a condition and my support group for M.E patients and carers. It would be silly to waste the opportunity. So, maybe my 6 weeks off will start on the 21st July.... if nothing else crops up!

Love,

Sally and Foggy (OBVIOUSLY)
xxx

Friday, 29 June 2018

Foggy's World Tour 2017-18 Photo Competition!

*Foggy* Hi!! I am so photogenic I can't help looking fabulous in every photo that is taken of me :)  Sally has looked through the hundreds of photos that my sitters have taken over the past year and has narrowed it down to her top 5.

There were so many fantastic photos to choose from, choosing these 5 was a hard job! Thank you to all Foggy's sitters for letting him tag along and allowing him to have so many global adventures! 

Now it's up to you guys to pick the winner. Which photo do you think is the best from this campaign.

One choice each.

Click this link to vote - https://www.surveymonkey.co.uk/r/7X6HPPG

I'll announce the winner next Tuesday (3rd July)

Love

Sally (and Foggy OBVIOUSLY)
XXXX



Queen Elizabeth Cruise
Pen-Y-Fan

Table Mountain

Las Vegas

Christchurch




Tuesday, 26 June 2018

A Few Noteworthy Things...

Hello!

I hadn't planned on writing loads of blogs during Foggy's home stretch but a few things have happened that should be talked about.

Yesterday, for want of a better word, I was 'head-hunted' due to my social media marketing business to 'host' a Twitter hour slot for the foreseeable future. I had a phone conversation with the founder of this successful business related Twitter hour (38k followers) and felt extremely happy to be asked. She said she weekly has hundreds of requests from social media marketers to do hosting but she only uses people who have demonstrated creativity, talent and experience. It would have given me much needed exposure for my business. Whoop....what a fantastic compliment. I would have snapped her hand off....if I didn't have M.E.

This Twitter hour is at 1pm, JUST when my M.E usually starts to hit, regardless of what activity I have done during the morning. I find that social media is draining when I schedule tweets or send them out spontaneously during the day. One hour of absolutely concentration, creating content, topics, and responding immediately to interaction.....ugh. It's a busy twitter hour, I know because I interact with it myself. It's got a very good reputation for having great content and being good fun. 

Part of the reason I turned the opportunity down is guilt. I would feel dreadful if I couldn't keep up with the time commitment due to my M.E or if I struggled cognitively halfway through an hour. Due to the nature of the beast, it is a solo venture. Just me, sitting at my desk, 'talking' to lots and lots of businesses online. I wouldn't have a back-up plan. She explained it as like being a DJ, I would simply be filling in a slot of time.

I am disappointed but know it is well outside of my energy possibilities. Such a shame, I know I would have loved it and been blooming good at it! You can't be witty and fun if you are cognitively comatose. I am just going to take the opportunity offer as a huge compliment of my social media ability, it's great to be recognised professionally.

The second thing happened this morning. I have just watched a segment on Sky Sunrise about how patients with chronic illnesses deal with sick days with employers. Crohns and Colitis UK have done
some research, that's why they were on the breakfast news show. This piece of research highlights that instead of being honest about why we need to take time off sick, patients (in this case Crohns and Colitis but the same can be applied to all chronic illness...M.E included) say they have a common complaint instead of naming the chronic illness as the reason for the time off. So, for example, they might say they have a tummy bug and so need to take one day off when in actual fact it is a flare of their chronic illness. Everybody knows what a tummy upset is like, no need for graphic explanations or in-depth conversations about back to work schedules etc.

This resonated with me personally because, as a mild sufferer who was able to work full time, I used to do this. I used to proclaim that I had never had a day off due to M.E. I lied. I lied for 2 reasons.
1. When I was in employment I didn't want to give my employers an excuse to call me unfit for work.
2. After I left, I was job hunting and I didn't want to put potential employers off.

The sickness level in my department was high across the department so I didn't stand out as the 'sick' person. I wasn't anywhere near the limits of acceptable sickness absence. However, I did take quite a lot of time off with migraines, headaches, feeling nauseous, very low blood pressure, feeling faint -ringing bells with anyone?!

Wouldn't it have been lovely if my employer understood my illness? Wouldn't it have been great to not have to lie about what was wrong?

Love

Sally
and Foggy (OBVIOUSLY)

xxxx

p.s You have 8 days left to donate! Please donate via mefoggydog.org. Foggy snogs in advance xxxx

Saturday, 23 June 2018

Fit For Purpose?

Hi Guys,

On day one of ME Foggy Dog way back in 2014, the original plan was to raise research funding and awareness of M.E. The plan was to enlighten people in the wider non-M.E community about the illness itself and the politics surrounding it. I strongly believe that we need these people to understand our illness, even if only at a basic level, so we can progress and battle the stigma. However, I am wondering if I am achieving that and pondering whether ME Foggy Dog is fit for purpose.

We aren't fit for purpose as a fundraiser. We have made in 4 years what we had got very close to reaching in year one. Some people raise £10k simply by doing one fundraiser, perhaps an event or marathon. We have raised just over £10k by doing 4 years of blooming hard work every single day..... yep...every single day. Whether that's creating content on social media, organising Foggy's travel plans (very often a logistical challenge and stressful) , promoting M.E in the media, talking to University researchers about the possibility of them putting their efforts into ME research, networking with University lecturers, and more recently networking with business people about future plans. Team Foggy will not be fundraising again, I find it harmful to my self-esteem and I don't like repeatedly banging my head against a brick wall. I will be dipping my toe into crowdfunding and profits from sales of future products/ticket sales will go to research funding instead.

Let me be clear, I have never expected funds to come from the M.E community. I am not dumb, I know you guys often do not have the cash to spare. However, it has become clear to me that that is exactly where the cash is coming from. Either sufferers themselves or their wider family/friends. This upsets me. This is why I try to get non-M.E peeps to engage with our cause. They have the money to spare but simply don't know what they are donating for....very often they don't think of M.E as a worthwhile cause because they don't know enough about it. That's where awareness raising comes in.

I LOVE the M.E community, specifically those of you who contact me direct, share everything I do and have fully engaged with Foggy. I know you guys think I am raising awareness and I am very grateful for your love, support, and enthusiasm. However, it is noticeable to me that my posts aren't shared by non-M.E peeps. I include family, friends and support networks in the M.E peeps category. I'm talking about people who have no personal contact with M.E, who didn't know anything about M.E before following Foggy. If I'm wrong and you are a non-M.E peep, please do let me know whether my awareness raising is working! In 4 years, I have never received an email/message from someone who has discovered M.E due to Foggy's work online.

People I meet in the real world are now enlightened. I know for a fact that I have raised awareness among business people I meet who had no prior knowledge of the illness or our fight for recognition. Attendees of my public speaking events are also aware and have a greater understanding of how to support members of the M.E community within their working environment.

There is absolutely no point in raising awareness within the ME community. We are all 100% aware of how rubbish our illness is. We might learn about other people's variation of the illness or about a new symptom that we hadn't yet recognised as part of our own M.E. But you don't need me to tell you about your own illness. ME Foggy Dog is sometimes just an information sharing platform, completely not what it was set up to be. There are other organisations that do that very effectively so ME Foggy Dog isn't needed in that format.

I am currently driving myself nuts trying to work out what to do with ME Foggy Dog in the years to come, or whether he should continue at all. Should I just close everything down and get some of my life back? My life is not only restricted by my own M.E but also by the pressure of doing at least 2 hours of 'Foggy work' every day. This work often uses up the tiny bit of spare energy I had, which would be ok if I felt I was achieving anything.

I have recently been to networking events and workshops with business people to try and get my ideas a bit more structure. I have had the pleasure of meeting some very enthusiastic business people who want to get involved. Some of the ideas that have been enthusiastically discussed have included concerts, books, range of teddies. and HUGE awareness events. All of which would reach non-M.E peeps as well as the M.E community. Whatever happens next, Foggy is going to get BIGGER. His adventures will continue but the other stuff will be done purposefully and determinedly to get the wider general public engaged. If there are any celebs out there (you don't necessarily have to have M.E!) who want to get involved and help us to grow please get in touch. We need a bit of star dust to get noticed.

There are now 10 days to go, I can't wait to put my feet up for a bit! (I'm still doing local events though so maybe not as much of a rest as I need!)

Love,

Sally
(and Foggy OBVIOUSLY)
XXX