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Sunday, 26 July 2015

Raising awareness one step at a time

Hi,

Sally is still working hard even though the campaign is now finished. A few opportunities have cropped up since the TV appearance on the last day (15th July) and so she hasn't been resting as much as she would have liked. She needs your help - see below.

Hello,

I have been asked if I would like to contribute to a talk being given in my place of work. The talk is about hidden disabilities; my segment will be about chronic illnesses and the support that sufferers need within a library environment; I will, obviously, be using M.E. as the focal point.

I didn't get any support from my library when I was studying at university; I hadn't been diagnosed at that point in time. Although I had symptoms I had no diagnosis to work from. So, I can guess at what support I would have benefited from but need to pick other sufferers brains for ideas.The talk will be delivered to all kinds of library staff; academic, public, corporate, etc. It is not purely aimed at other university libraries.

So, all of you sufferers out there who use libraries for studying, work or pleasure, can you let me know what support you receive but also what support you feel could be useful?

My initial thoughts are that brain fog and concentration may mean we need to borrow books for longer and need reminders about when the books are due back. Extra allowances should be made when fines are incurred because we have probably forgotten that we have the book in the first place. How would we remember to take it back! We would probably forget where the post-it reminder note was! Severe sufferers wont be able to get into a library so distance learning, when books are requested and sent out to the home address, would be essential. That said, would severe sufferers have enough cognitive function to read books? Personally, I found that studying in a library was impossible, noise and lighting intolerance meant I couldn't concentrate at all. So, I used to struggle into the library, take books out and then go home to study under my duvet. My postgraduate was achieved from my bed. I read for 15 minutes, slept for 5, read for 15 minutes, slept for 5....can you see a pattern forming?! Is that the same for other sufferers? Please let me know.

I will be using your responses, ideas and examples within my talk so please email me at mefoggydog@gmail.com.

Thanks,

Sally xx

Wednesday, 15 July 2015

WOW - What a day!!

Hello!!

Foggy is curled up on the sofa with Patch and Sally this morning. Sally had insomnia, too much excitement yesterday, and so is getting the last few Foggy bits and bobs sorted before her day starts.
Here is what happened on the last day of Foggy's World Tour!

Hi,

Phew, yesterday was a long day! The trip to the London Eye had been planned, with military precision, a while ago and it was expected to be a slow, non-chaotic, trip to London so that Foggy could end his campaign on the London Eye. However, the BBC contacted me and asked if I would like to go on BBC South Today to 'tell Foggy's story'. This is something I had been hoping for during the entire campaign; it was an opportunity not to be missed! So, all London plans were rearranged. Foggy and co had to be in the studio in Southampton by 4.40pm (things didn't go quite to plan!) and so the Thames river cruise had to be cancelled and 'posh' celebratory lunch was cut short. Which is a shame as it was definitely a celebratory 'look at what we have achieved' day. The change in plans was DEFINITELY worth it though!

Sally, Foggy and Rae on the London Eye
The day started with a train ride from Portsmouth to London Waterloo....Foggy LOVES trains so was wiggling with excitement the whole way. A short walk to the London Eye followed and luckily we managed to dodge the light showers of rain. The South Bank, where the London Eye is situated, was incredibly busy. It was actually quite overwhelming, I find crowds too hectic, noisy and tiring. My family and I had arranged to go for the Champagne Experience as it was a celebratory day. We headed to the, much quieter, champagne bar for a breather and much needed peace and quiet before being greeted by our 'host' Rae. She escorted our group onto our London Eye capsule and took care of us during our 'flight'. She was interested in what we were doing with Foggy and wished us luck - thanks Rae!

I had planned to do a short video clip within the capsule with the London skyline as the backdrop. Unfortunately, there were 15 of us in the capsule and it wasn't possible to get space to do it. We managed to get some good photos though, see them here in Foggy's facebook album.
https://www.facebook.com/media/set/?set=a.1611304339130486.1073741880.100007528067190&type=1&l=c0b076fd47

Then came a quiet, very lovely, meal in Gilray's Steakhouse. 2 courses and a cocktail later and Foggy and co were happy and refreshed. Unfortunately, we then had to hot foot it back to Waterloo to get the 2.30pm train back to Portsmouth. From there we would have to drive across to Southampton for the interview. Of course, we hit every single traffic light between Portsmouth and Southampton during a very busy rush hour! Three, already tired people, were a little bit frazzled as the clock ticked past 4.50pm.....5pm.....5.10pm.... As sufferers know, stress makes symptoms worse and I was worried that such a long day and now a stressful car journey would make me unable to 'do my bit' in the
Cheers!
interview. What if I couldn't string a coherent sentence together? My throat was sore, glands swollen and brain fog was starting to creep in. I was getting stuck on the odd word and it wasn't looking good! Finally, we arrived at the Southampton studios at 5.12pm (interview was suppposed to be pre-recorded at 5.15pm!) and were rushed straight into the studio. 


Everyone at the BBC was lovely and accepted our apologies for our, more than half an hour, late arrival. I went though 'make up'; under chin blusher (hopefully to hide double chins!) and a bit of lippy applied and I was ready to go! Presenter Sally Taylor chatted to me before the interview and was genuinely interested in M.E. and Foggy's campaign. She said she wanted to help me make viewers understand what M.E. is on a human level. I hope that is what we achieved. Here is the clip extract from the programme. BBC South Today 15/7/15 - 6.30pm.
https://youtu.be/Ha-11xi8GRU

Since the programme aired last night I have received fantastic feedback for both the interview and campaign. Thank you to the BBC for giving me the opportunity to raise awareness on a wider platform. I am very grateful. So far the interview has helped to raise an additional £150 for Foggy's fund from people who didn't know Foggy existed until yesterday. Great!


Foggy's end of campaign totals are:
£5937.54 - excluding Gift Aid
£7236.23 - including Gift Aid

The Just Giving page will be kept open to mop up any additional donations and auction payments (from the sale of Big Foggy etc). So, if you haven't done so already please donate and help Foggy fund desperately needed medical research.

I had planned to stop running myself ragged with Foggy work with effect from last night. However, it is becoming obvious that this campaign is not going to finish overnight. So, I will be occasionally uploading a few bits and bobs over the next month or so. 

Foggy will be back!! I am going to give myself 6 months off concentrated campaigning. It has been a wonderful, life changing and rewarding year but my body has paid the price. So, I need time to recharge, get back to normal (whatever that is!) and sort out a few aspects of my own life that have been neglected because of Foggy's adventures. I have a few ideas for the next campaign already and I am going to have to work hard at reining myself in! I need 6 months of enforced rest to prevent making my health worse. I know it's for the best but it is a little bit frustrating! That said, the books are still coming soon. The children's books are written, I am just waiting for the illustrations to be sorted and the blog books will be done in slow time over the next couple of months.

It will be weird not logging in the second I wake up to see what Foggy stuff has happened overnight; yes, I will miss it. Thank you to everyone who has supported the campaign financially, practically and emotionally. I have made some very good friends since last July. Some of whom I will probably never meet but will keep in touch with even now the campaign is over. 

I am, and will always be, an M.E. advocate and campaigner. Even if a miracle happens and I eventually find myself free from M.E.

Love and doggy snogs,

Sally and Foggy xxx






Sunday, 12 July 2015

Buttons!!

Hello!

Foggy has 3 days left. Sally, Foggy and a couple of members of Team Foggy will be ending his World Tour on the London Eye in London. While he is resting his paws in Foggy HQ he has told Sally to write about one of the things that drains her energy super fast...I.T.

Hi,

Let me start by saying that I am I.T. literate; I actually know more than the average Joe about websites, mobile phones, social media etc because of previous jobs that I have had and life experience. However, just because I know stuff doesn't mean that my brain can cope with it! When I say I.T. I mean everything related to it: computers, mobiles, software, cables and stuff we can't see ie. clouds. I spend an extraordinary amount of time each week downloading files and images. Easy enough but every week there are at least 10 instances of the file being too big or incompatible. When that pesky error message comes up on the screen how quickly do you think my brain remembers how to resize or reformat it? 

It's ironic that Foggy's campaign is social media driven; social media tires me out tremendously! That constant need to upload something engaging, and responding to Followers as quickly as possible, means my brain is always on Foggy alert. Some days, when I get home from work, I have to force myself to upload content. I love Foggy and everything about this campaign but it has also been exhausting. My own personal drive keeps me going and has been forcing my body to push itself for the past 12 months. I know some of my close Foggy supporters have been worrying about me and the pressure I put on myself, thank you for your concern; it is appreciated.

Foggy's campaign has amassed more than 5000 photos (eek). Way back in July 2014 I bought an external hard drive that was capable of holding A LOT of images. Great! Or so I thought. In November 2014 it died. CORRUPTED. Nooooo! Panic mode kicked in and Andra (key member of Team Foggy) helped to salvage as many photos as she could; she even put the drive in her freezer to try and fix the problem! Don't ask, apparently it's a tip that sometimes works. Luckily, MOST of the campaign photos were rescued and moved onto Google Drive. However, they were now in no particular order. I will hold my hand up now and say that I simply have not had the cognitive energy to reorder and categorise the photos that had been 'lost'. It will take me hours and hours of sitting in front of a computer screen, dragging and dropping. This makes uploading photos incredibly time consuming (scrolling through them to see which one I want) and it is all a bit hit and miss but my brain hurts just thinking about sorting them all into month order. 


Ahhhhh, next comes mobile phones or as I like to call mine 'the pain in the **** portable computer'. Let me clarify, I have a super duper smart phone. It is an old business phone and is far too techy for my own personal needs. The contract ends this month and here is a photo of the phone I am getting next. Yes, it is a Nokia...with BUTTONS!!!!! My pet mobile phone dislikes, with regards to M.E. are:
- Massive bright LED screen hurts my eyes, even at the lowest brightness level.
- Touchscreen doesn't always register finger presses and I use energy trying over and over again
- Scrolling through to find the app that I want; again, waste of my energy - cognitive and physical.
- Don't even get me started on updates - very low level stress impacts my energy levels. Especially when they fail because you dared to change your password on another computer!
- Being available 24/7....means I can't 'turn off' unless I physically turn the phone off. Not great when I need to reserve energy.

I think having a phone that allows you to do EVERYTHING pressurises you to DO everything. I am more of a pen and paper kind of gal. I used to spend time keeping notes on my phone, it took ages to concentrate on pressing buttons and getting the drop down box to register my finger press. I don't need to keep notes on a mobile phone, just give me a scrap of paper and a pen. No need for pin numbers, passwords, updates or settings changes with a scrap of paper.

So, I have a master plan. For 6 months, up until I start another Foggy campaign and need mobile social media again, I will be having an old school, easy to use mobile with no data plan. You can get data on this phone but I am choosing not to. I am going back in time, to the days when mobiles were used for communicating with calls and text ONLY. I can feel the stress ebbing away already!

Since starting this campaign it has become abundantly clear to me that M.E. sufferers need to simplify their lives as much as possible. I think most sufferers find I.T. and social media, incredibly draining and tiring. Let's all ignore super duper marketing campaigns and peer pressure and get back to basics. Our bodies will thank us for it.

Sally xx



Monday, 6 July 2015

Foggy's Abseil

Hello!!

Sunday 5th July was a beautiful, if a bit windy, day in Portsmouth. It was the day that Foggy 'piggy-backed', one of his favourite humans, Cerianne as they abseiled 94 metres down the Spinnaker Tower. Take a look at the photos! 

The day was fantastic and a resounding success from the £10 donation from the taxi driver on the way to Gunwharf to the donated bottle of celebratory bubbly from a bar in the area.

Yet again we were amazed by the sheer amount of people who, once they knew why we were fundraising, said they were related to a sufferer. Foggy's campaign definitely struck a chord with a lot of people on Sunday.

Although the abseil has been done now the donation page will be kept live until the end of the campaign (15th July). So, if you are inspired by the photos and want to support Cerianne and Foggy's bravery and adventurer spirit you can donate via:

https://www.justgiving.com/Foggyabseil

Foggy received some cash donations on the day; these have now been added to the Justgiving fund. The current abseil total stands at £283.22!!!! WOW

Doggy snogs xxxx






Thursday, 2 July 2015

Greetings from British Columbia!! Blog from Kristina, a severe sufferer

Hello!
Sally is always looking for guest bloggers to demonstrate the wide spectrum of M.E. severity. Today's blog has been written by Kristina who lives in British Columbia. Not only does she have this dreadful illness; she also runs her own chronic illness support network called Chronic Pain Heroes.
Foggy Followers who have been following since the start of the campaign may remember Kristina from an insomnia lead You Tube clip! (click the link) https://youtu.be/1zbxGeDfXwc. Here is her blog.
Kristina
My journey with chronic illness started with a minor ankle sprain in 2008, which was diagnosed as Complex Regional Pain Syndrome. This turned into a rabbit hole I never could have imagined (definitely not as fun as what Alice in Wonderland experienced). After spending two years trying to get my ankle “fixed”, I ended up having to take time off work, but managed to be back full-time by June 2010. However, it wasn’t easy. In fact, it was getting harder and harder to push myself. I think I had a bad flu in October, but I can’t remember. That’s another feature of ME-CFS – short-term memory loss. But, whether I got sick or not, I do remember my energy steadily declining. I began falling asleep in the supply room during my breaks. I, of course, continued tackling this in my typical “Type A” fashion (if you don’t know what I mean by “type A”, then you aren’t one). Basically, I kept trying to push myself harder to get through the day. Then, one fateful night in January 2011, the right side of my face exploded with pain. That was my initiation into the world of ME-CFS. It was also the last time I went to work. To say ME-CFS makes you “tired” is incredibly offensive. It is so much more than that; though I do have a rather severe case of it. I can remember one day when I felt too exhausted to exist. Just breathing became a monumental task. My body had been pushed for 2-1/2 years, and it was done. Here we are in 2015 and I’m still learning to manage my symptoms; though thankfully I’m no longer afraid of them. Flare-ups come and go in cycles. I’m learning to rest when my body says to rest. So, where is the bright light in all this? I thought you would never ask!
I began reaching out to online communities early on. I have met the most amazing people – many have become good friends, even though we have never met. I have also seen how much my husband loves me. This is hard on any relationship. In fact, I think it’s worse for him in many ways. I don’t have the energy to do much. Oddly enough, this causes my days to fly by (I’m still trying to figure that one out). But he is strong and healthy. All our plans and activities are out of the picture – for now. Instead, he has become my caregiver, and he does it all without complaint – wow! I have also discovered how much God loves me. I know that sounds absurd, but stay with me. Until all this happened, I could take care of myself, thank you very much. However, when my body fell spectacularly apart, I cried out to Him in desperation – and He met me where I was. My husband and I now enjoy a rich faith and we love exploring it together. Yes, my days are still hard at times, but now I have hope! My husband and I are studying the field of Apologetics and I’m enrolled in a Certificate in Theology program starting this Fall. Given my severe cognitive issues, my success relies fully on God, and my commitment to follow through… especially since I just told all of you! So please don’t give up hope. You will make it!

Kristina x