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Wednesday, 19 July 2017

Not doing as I'm told!

Morning!

So, Foggy is currently on his way to Bristol to meet up with Poppy, who will be taking him to Tuscany for an Italian adventure in a few days. I'm awake at stupid o'clock again so thought I would write you lovely people a blog!

For the past 6 weeks or so, my life has been a bit topsy-turvy. I have been doing the complete opposite of pacing (as hard as I tried, it just wasn't happening). I knew Foggy was coming back and was trying to get stuff done in slow time so I wouldn't have a mountain to do when his campaigning started again. All I've actually done is found a mountain-sized lump of stuff to do each day over a longer time-frame! I kept finding more....and more...stuff to do! 

I've been trying to find a way to step Foggy up to the next level. I've applied for schemes and awards. Not for recognition but for additional publicity and awareness-raising. This has meant networking and awards events (I was unsuccessful - sorry! I tried) and applications for proper grown-up stuff that mean days out and lots of travel (by my standards anyway!). 

This extra activity has meant I have been experiencing 'crash and burn'. When I crash...I CRASH. I am finding that the symptom of disequilibrium is quite bad at the moment. Feeling very disconnected from everything. When I am stumbling, zombie-like, to my bed at around 2pm every day for a 'power nap (HA!) I feel as if my head isn't quite connected to my body. I can't string a coherent thought together and if there was anyone around to talk to I think I would just grunt because of a temporary lack of brain power. I have complete zero energy at that point. My body has been melting into the mattress as I sink into oblivion for a few hours. Despite my nap, I am still exhausted by 9.30pm with the desperate need to get horizontal. Anyone who doesn't know what that feels like..... it's as if your head is a bowling ball on a toothpick and the weight is too much for your neck/spine to bear and you need to lay down flat to alleviate that feeling. 

Anyway, now that the merchandise is sorted (Don't forget to check out Foggy's shop on mefoggydog.org! All designed by moi - all profits will be going to the ME Association for research purposes), Foggy's itinerary is slowly being filled (details below) and many of my appointments have been and gone, hopefully I
can settle back into 'normality' now! I've been trying to explain to non-Foggy Followers exactly what it is that Foggy and I actually DO. They initially say 'so you are a fundraiser?'. I suppose on paper it might seem that way but I think we are soooooooo...ooooooo much more than that! Aren't we? I'm putting at least 2 hours work in per day to keep Foggy working at full steam ahead pace. I don't know how I would describe our voluntary work, it's hard work but very rewarding...whatever people want to call it.

So, this is Foggy's itinerary from today's date - 

TUSCANY - Back to Foggy HQ around 7th August
7th August - 19th August -AVAILABLE
23rd August - 3rd September - IRELAND
3rd September - 10th September - AVAILABLE
14th September - 22nd September - QE2
25th September - 6th October - CALIFORNIA
10th October - 19th October - PORTUGAL
25th October - 18th November - CUBA
19th November - 15th December - AVAILABLE
16th December - 17th December - THAILAND (dates to be confirmed)

Foggy has nothing booked in for 2018 yet. Get in touch if you would like to Foggy-sit! 250,000 miles here he comes! Foggy has only been globetrotting for a couple of weeks and has already visited the Netherlands and Iceland so we are off to a great start! I don't know his current mileage as I've not had travel info from his Iceland sitter (I think they may have ventured to Norway too if the photos are anything to go by...the photo on this blog was taken in Bergen - I Googled it...that's in Norway 👀.) . I'll update his mileage when I can.

We have had one online donation since this campaign started, and that was from my Auntie, please do donate and make our hard work worthwhile. I know it's a year-long campaign but please don't leave donating until the end! Donate via mefoggydog.org. If you live in the UK you can also donate by text. If you would like to donate £5 simply text FDWT52 5 to 70070 (you can donate £1, £3, £5, or £10 - alter your text accordingly).

Thank you!

Love

Sally xxx
and Foggy (OBVIOUSLY) xx

Rhia's M.E Story

My name is Rhia. I am 22 years old and was diagnosed with M.E in November 2016.

I've had a lot of my symptoms for a few years, but they really started to show in 2015.

M.E is a variable illness. Sometimes I can be absolutely fine and other times I feel so rubbish that being in bed for hours seems like the best option for me. Having said that, my 'good days' now are still not how I used to be, but getting there I think.  I am lucky enough to have a mum who runs her own business. I now work for her and am able to tailor my hours to suit my health and how well I am feeling.

A few months back, I was desperate to just be completely cured. Whereas now, I try to just deal with my symptoms on a day-to-day basis.  Having spoken to other members  on a  course I took ,that taught us how to deal with the illness and how to 'pace' , I know that not everyone has the same symptoms. 

My most severe symptoms include: muscle aches/burning, jumbling my words, feeling like I can't connect fully with what is happening around me , memory problems and nausea/dizziness. Luckily I don't get all of these symptoms ALL of the time, unless I am really wiped out! 

I think support is key to handling M.E. I have been lucky to have the support from my family , partner and friends, but have found that I have to 'prove' to medical professionals that I am unwell. I have also had to go through various processes just to prove I cannot work full time and am entitled to some financial support. I am still in the process of 'proving' I am unwell, but do just about get by on my 10-15 hours paid work a week. 

I sometimes use a crutch to walk if I am having a bad day and am out in public. This helps others to be aware that I am a little unstable on my feet, and they then don't get angry at me for walking slowly!
It took a lot of courage for me to start using the crutch because many can't see why I need to use it if I am ''just feeling tired''. I don't tend to use it much, but do find that a visual sign of someone being unwell really helps people to be more understanding.
If I am doing well for a few weeks I do actually tend to think "maybe I'm not unwell after all and was just being dramatic/making it up in my head" but it quite often comes back and hits me in the face when I do too much and need to recover! 

My aims for the future are;

- To be more confident in myself, and not be embarrassed or ashamed of being unwell and telling others about it.

- To increase my work hours gradually so that I am able to support myself in the future, and so that I am able to do the social and active things that I enjoy.

- To keep a diary (which I keep meaning to start!) of my M.E experiences.

- To listen to my body and to learn when it needs to rest, even if I feel like i can carry on and use up that last bit of energy.

Love,

Rhia x

Monday, 17 July 2017

Can't tell you much but....

*Foggy* Hello!

Team Foggy went to Winchester this morning. I only got back from Iceland late last night so it's all been a blur since I got back!

Sally doesn't want to tell you too much about what we got up to today, just in case we aren't
successful in our attempts. BUT, she will say that IF we are successful then my mission and adventures will get bigger and we will be able to help the lives of so many more sufferers and their support networks than we are able to at the moment. Think of it as a kind of job interview, today was the second stage. We will find out how we did on at a later date. We'll keep you posted.

Because Sally is now self-employed and is steadily building her business, she doesn't have the money to help me do lots of fun stuff like I did in the first 2 campaigns. That's why she asked for business sponsorship. We haven't managed to get any so we (my campaigns) are now living off of Sally's 'Bank of Mum and Dad'. Thank you Bank of Mum and Dad whoever you are!

Our round trip added 60 miles to my mileage. We don't know how many miles I travelled during my Iceland trip yet, details and photos to come.

Love,

Foggy xxx

Thursday, 13 July 2017

Noise Sensitivity

Hello!
Sally is having another one of her 'I've been awake since 2.30am so will get up and do Foggy admin' mornings. I'm on a cruise ship heading for Iceland but have just spoken to Sally via face time (;). Here is a blog about how my best friend Patch is not helping one of her M.E symptoms at the moment.

Hi,
So, I know 100% that Patch loves me from his paw pads to the tips of his beautiful ears. But, he now has doggy dementia and is barking A LOT and it is causing my symptom of noise sensitivity to flare. I completely understand that he can't help it. Because he is 75% blind, 80% deaf and has mobility issues he gets anxious easily. Hence the barking. Patch has always had one of those really deep 'manly', loud barks, I think in his head he is a butch Alsation or Doberman and not the Jack Russell that he is! Now that he can't hear himself 'talking' he is even louder!
Patch xx

My family and I could be chilling out watching TV, not doing anything special and he starts barking...for no reason. He can't hear us telling him to be quiet and can't see us using body language to calm him so my senses are in tatters after about 30 seconds!

When noise sensitivity kicks in I can literally feel my energy slipping away. Almost as if my energy levels were a bath full of water and someone has just pulled the plug. My brain is working so hard to overcome the sensitivity to noise that it uses all of my energy. Just lately, I might have a half-full energy 'battery' at the start of the day but by 10am, thanks to Patch's barking, I have flatlined. I'm also
finding that my neck glands, which are always slightly tender, flare instantly and get very painful. Again, because my body is trying to counteract against the noise sensitivity. My entire body, because of the depletion of energy, goes a little bit floppy and slow. My speech starts to slur and it's all bit of a mess really.

I work from home and often sit at my desk wearing noise cancellation headphones. I can still hear him. I also work listening to the radio, the combination of Katy Perry and dog barking is enough to send me into meltdown!

We have bought him some calming herbal medication so hopefully he will feel less anxious soon. I know my ears, energy levels and sanity will be grateful!

Love Sally
and Foggy (Obviously)

Saturday, 8 July 2017

Lynne's M.E story

*Foggy* Hello! I have asked my fabulous Followers if they could write a guest blog post for me about their own personal M.E story. This is the first of this campaign. Please read this blog post from Lynne, North Shields, Tyne and Wear, UK.

Being diagnosed with an invisible illness has to be one of the weirdest things that has happened to me and I've experienced some weird stuff!
 
You have all of these symptoms and you feel the pain but all of the tests come back saying you're fine! The doctors send you home and you move no further forward. After 5 months of going to the GP in tears on a weekly basis, I was eventually referred to the Tropical and Infectious Disease ward at the local
Lynne -
 Doesn't look sick does she?!
hospital. Sat there silently playing a game of "what does this person have?" in my head...I mean who wouldn't be wondering.... It's the Tropical and Infectious Disease ward! Then I realised someone will be doing the same to me. You get sent there when the GP has no idea what's wrong with you. They take about 8 vials of blood and test you for HIV, Hepatitis etc... I mean, I suppose it's good to know I don't have any of those things. My poor arm was black and blue from the prodding about trying to find a vein. 

Everyone around you becomes a doctor. Telling you to "think positive and ignore the pain" (REALLY!!!) and their sympathy runs out pretty quick! So, I try to avoid being off sick. Sometimes it's unavoidable. Like when you try to stand up out of bed and drop faster than a brick from a roof, but other times my good friend Tramadol helps me through the day! It's great stuff for taking the edge off the pain and it took a lot of begging my GP to prescribe it so this stuff is like gold dust!  Tramadol sometimes makes being at work entertaining! I am able to function, although when I first started taking it my memory was shocking. I asked one of my colleagues what time she came into work as I hadn't seen her all day, only to be met with a puzzled face and her telling me I had spoken to her an hour earlier! Oops! 

Brain fog....nothing seems to work for this little gem. I recently bought a new car...It's pink so you'd think I would remember this, but no, I was stood in the car park confused and panicking that someone had stole my car....Nope, I had forgotten that I had a new car! I swear people turn my memory issues against me when they forget to tell me  something. I'm looking in your direction Mum! My tolerance to alcohol is non existent now. I was blaming getting older but its a symptom and no lie, I was relieved to find out this wasn't because I just turned 30! 

It's not all bad though...Even if I am in bed by 9pm every night. I really do believe that if everyone who is struggling with invisible illnesses keep talking, sharing and making people see it's not our imagination, Maybe something can be done to help us. My illness was brought on by Tonsillitis a year ago.If anyone around me has any sort of Strep infection I literally run away from them. I hope that this can be cured or at least begin getting some sympathy for those of us who are suffering. I doubt anyone truly gets how hard it is to smile daily and power though the pain. No one wants to be sick. I don't want daily pats on the head or anything, but a little bit of understanding will go a long way. 

If anyone reading this is newly diagnosed like myself...Keep going! It takes a while to learn your limits, I often ignore my body and regret it for about 3 days after! We are stronger than we think.

Lynne xx

Friday, 7 July 2017

Here we go again!

*Foggy* Hello!

Sally is waiting for her payback to kick in today (today is 2 days after MASSIVE exertion at the launch party) So she is settled back, taking things nice and easy and is writing this blog to let you all know what to expect from my 2017-18 World Tour! I'm resting my paws in the sunshine today.....off to the Netherlands later today!

Hi,

So, off we go again! Foggy and I enjoyed the launch party immensely. We met lots of new people that live in Portsmouth and had not heard of Foggy before. I definitely raised awareness with 2 people! One person
has known me since I was 16 and yet he 1. did not know I had an invisible illness and 2. didn't know anything about M.E - he does now! There were 4 M.E sufferers present, it felt like a great mini-community and we are hoping to keep that going now that we have met in person.

Here are some launch party related links for you to take a peek at.
Launch party talk!
T-shirt offer...
Photos of the launch party!

So, Foggy is off to the Netherlands this weekend for a Roman re-enactment weekend. For Foggy's Followers who have known about him for a while, he is having adventures with Aunty Sharon again. They have so much fun together, this will be their third adventure. Here is a bit of info about the re-enactment group - Ermine Street Guard Foggy will arrive back at Foggy HQ early next week. Then it's straight off to Iceland, on a cruise with Sue Turner from Elephant in Scarlet. Sue video'd the launch party - Foggy snogs Sue xx

Tuscany comes after Iceland! Poppy will be taking him away for an Italian adventure! Foggy LOVES Italy, he has never been to Tuscany before so is looking forward to it!

Foggy needs a Foggy-sitter for August. He is free from 5th August to the end of the month. Get in touch if  a. you are from the UK and are going overseas on holiday or B. You live somewhere non-UK and would like to have him posted to you for an adventure!

Foggy has a shop! Check it out and see what goodies he is selling!

https://www.mefoggydog.org/shop/ Top tip - Measure yourself before ordering. The sizing is on the small side so you should allow an extra couple of cms just to be sure. I hope you like them - I designed them myself. Not bad considering I am not a designer! All profits will go to Foggy's Fund for ME research.

ME Foggy Dog raises awareness of M.E by concentrating on the human perspective. With that in
mind, I have been asking for other sufferers to write Foggy a blog post about their own personal experience of M.E. I want blogs from people whose story hasn't been told before. I have been sent a number - thank you. However, all blogs have been written by Caucasian women. M.E does not discriminate in terms of race or gender. If you are not Caucasian/female, please consider writing Foggy a blog post. I want to show that M.E can affect anyone, anywhere, at any age. I would like that to be reflected in these guest blog posts. Please contact me via mefoggydog.org if you would like to tell your M.E story.

That's it for now...eyelids are starting to droop. I hope you all have a good day by your own standards.

Love,

Sally (and Foggy...obviously!)


Friday, 9 June 2017

Whirlwind!

Hello!

So much has been happening in the past couple of weeks. I figured it was time to let you all know about all of the small, but significant, developments made getting ready for Foggy's launch on 5th July.

So, where to begin! I guess many of you will have seen Foggy's logo? He's not had one before so
Team Foggy is very excited! It will be great to add to the 'brand' and it will make anything Foggy does instantly recognisable. So you should see this logo everywhere! Thank you to Ali Schillemore (Twitter @AliSchillemore) for donating her time, energy and expertise for free to help our cause.

Now I have the logo sorted, I will be sorting Foggy's business cards, flyers, global travel bag etc.

Foggy LOVES cake. One of the first things he asked me to organise for his launch was a yummy dog-themed cake for his partygoers to enjoy. So, I contacted Jack Preston at Sweet Science Patisserie. You can see from his Facebook page - his cakes are delicious creations! Jack is donating this cake to our cause. Thank you Jack.

I want the launch party to be great fun with fantastic music. A young singer called Chloe Anne was recommended to me. She is a local Portsmouth musician and is extremely talented. She has also volunteered her services for free. She will be performing with my friend Ian Thomas who will accompany her on Saxophone. It will be great live music! Take a look at Chloe Anne's Facebook page.

I want the launch party to be great fun! With that in mind, my friend Laura Rose has offered the use of her vintage VW camper/photo booth services for the evening. She owns Lulubelle's Limousine, her camper is usually used at weddings and events to add photo fun! So, come along and play around with photos and props!

Next, the raffle had to be organised. I figured it was a good/simple way to raise cash on the night to get Foggy's fund off to a great start. I underestimated how much work is involved when trying to get businesses to donate prizes. It is particularly tricky when the cause is an invisible illness that is rarely understood! I listed the donors in my previous blog so won't do that again here. But, I would like to say again how grateful I am for their generosity. I have a number of supermarket and Amazon vouchers so will be able to buy prizes closer to the event too. Today, a bottle of London Dry Gin arrived in the post, not for my own personal consumption unfortunately! Thank you to Sipsmith for the donation (Found on NotontheHighStreet).

I am not liking promoting the launch party. It reminds me of past birthday parties - personality contest! Free tickets are being booked slowly and steadily but there are still a lot left. Book tickets HERE!  Please share this blog and encourage friends and family to attend. It would be an awful shame if not many people came after all of this effort! I have promoted it everywhere I can think of so now Team Foggy have to keep their paws crossed!

One bit of fab news is that Foggy will have an official promo video. Susan from Elephant in Scarlett, a local video production business, came to Foggy HQ last week and filmed Foggy and I. Footage will be turned into a short clip explaining what ME Foggy Dog is, for anyone who hasn't come across us before. This is a fab development and will certainly help to promote the Foggy 'brand'. Susan will also be filming the launch party and broadcast the event on Facebook Live. I had planned on filming it on my phone but, thanks to Susan, footage will now be of a good quality! However, the venue doesn't have wifi.......  Another issue to be overcome but... it'll be fine!

Finally....MERCHANDISE!! I have discovered bulk shipping. This will make selling stuff a lot simpler and I won't have to sell a certain amount before having them printed and shipped. My last venture into merchandise was a bit of a nightmare. This new way will be sooo much better! I will be launching the merchandise during the launch party. Foggy's 'shop' will be 'opened' on the website, mefoggydog.org, on the day of the launch! I will set prices low enough to make £1.50 profit on each item. That profit will be added to Foggy's fund. You can choose from mugs, t-shirts, vests and hoodies. At the moment, there are 3 different designs that cater for men and women.

There is also something top secret going on that COULD be very exciting. More info to come if I am successful.

Phew! This blog sums up my past month or so! 

Thank you for following Foggy....July 5th here he comes!

Sally (and Foggy....obviously)

Tuesday, 23 May 2017

Charity Raffle Prize Donations

Hello,

As you will probably be aware, I have spent quite a lot of time over the past month or so contacting various businesses asking if they would like to donate a raffle prize for Foggy's raffle in return for free promotion on Foggy's online stuff.

I have had a great response from supermarkets to beauty salons. Foggy Followers and my own family members have donated vouchers for me to buy prizes for the raffle. I am very grateful for everyone's generosity. However, I wanted to write this blog because a number of businesses have said that they only support children's charities, I want to explain something.

I completely understand what they mean by 'children's charities' but, do they know that M.E (or the
ridiculous C.F.S) is the major cause of childhood school absenteeism in the UK? M.E IS a childhood illness (in part). So, we may not be a neo-natal unit or be specifically aimed at children but the ME Association does support children with their work.

I have contacted well over 150 organisations and had positive replies from 10. M.E is not a trendy illness. We are invisible and misunderstood, and so getting positive responses was always going to be an uphill struggle.

Other news - 
The launch is getting bigger!!
We will have live music from a very talented young lady called Chloe Anne -Click the link to see her Facebook page.Chloe Anne She will be supported by Ian Thomas, a friend of mine, Former RM Musician and great Saxophonist.

The event will be screened live on Facebook Live. I was going to film it via my phone but after meeting up with Sue from Elephant in Scarlett (a video production company who is generously going to film a Foggy promo video free of charge) it will now be filmed using a top quality camera to make sure it's of a decent quality. So, if you can't come on the night you can watch it from home (Please come if you can though)!

My friend Laura Rose owns a campervan/limousine business and has offered the use of her gorgeous red vintage camper van at the start of the evening. So, anyone who attends the launch can have their photo taken with Foggy inside/outside of the van when they arrive. Great fun! Laura will also be bringing her photo booth (usually used at weddings) so we can all have fun with photos on the night. I'll be supplying props etc.

There will be a 20 minute talk from me OBVIOUSLY. I want to raise some awareness as well as raise money.

The charity raffle will have a minimum of 15 quality prizes so it will be well worth buying a ticket or 10! You've got to be in it to win it!

There will be a cake! Sweet Science Patisserie is donating a dog themed cake for the event. Foggy LOVES cake! Thank you, Jack, for your generosity.

Here is the link to Foggy's Launch Party - He hopes you can come!! It'll be a lot of fun!
'Buy' your free ticket by clicking the link and booking.  Foggy's Launch Party The venue has allowed 120 guests. I want to fill that room!

Love,

Sally xx