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Thursday, 20 August 2015

#IheartFoggy - Foggy wants to trend!!

So here is the plan.
The trending idea is to raise awareness of both Foggy AND ME/CFS. Foggy wants to get as many people as possible talking about these two things in a short period of time.
Foggy would like you to tweet about him and ME/CFS between 0730 and 0830 GMT on Tuesday 25th August.
That time has been chosen because it is an off peak time for Twitter in the UK (more chance of trending) but also late enough in the morning for most people to be awake! It is a global social media mission though so, if you are awake/able to, please take part and help make Foggy's trending plan be a success! Both UK and worldwide trends will be monitored to see if the mission is a success!
There are lots of foible's related to Twitter usage. If Twitter thinks it is a robotic, automated campaign they will block it. With that in mind, mass scheduling on sites such as Hootsuite may not be appropriate. As trending will be a mixture of numbers of people AND number of tweets, one person sending hundred's of tweets will
not be of any benefit. Lots of identical tweets are also a no-no, guidance is given below as to what to write. Variety will be key.
Could you please send any/all of the following tweets. Below are the actions/questions - you simply have to answer the questions and tweet a selfie photo. No essays required, just 140 characters including the #IheartFoggy hashtag. If you have enough characters left please also include #mecfs so it is flagged up to other sufferers who aren't aware of Foggy's existence (*Foggy* sob hic).
1. I Heart Foggy selfie photo of yourself - see the attached YouTube clip from the World Tour campaign.

2. My relationship to M.E. is...(sufferer, parent, carer, friend, campaign supporter, non sufferer etc)
3. What I love most about Foggy is....
4. My worst 3 M.E. symptoms are....
5. (M.E-wise) In the future I hope that......
Obviously retweeting and commenting on #IheartFoggy tweets will be fantastic and will help Foggy's mission to succeed!!

Please don't use the hashtag before the 'special' hour....trending only works with hashtags that have not been commonly used previously.

Important small print

The hashtag #IheartFoggy is the intellectual property of the ME Foggy Dog campaign/Sally Callow. It cannot be used for any purpose other than promoting Foggy.

This should be a fun experiment; positivity helps to spread awareness!


Sally (and Foggy)

Thursday, 13 August 2015

Overwhelming need to get horizontal


Foggy is resting his paws in Foggy HQ and I'm listening to his snores while I am typing this!

I want to take this opportunity to write a blog about the M.E. symptom that is orthostatic intolerance or as I like to call it 'my overwhelming need to get horizontal'. It is exceptionally difficult to explain what it feels like but I will give it my best shot. I have previously agreed with other sufferers who have said it feels like your head is a bowling ball on top of a toothpick and your neck doesn't feel like it can hold your head up. It is so much more than that though; it is a feeling that rips through your core. It's not pain but a weariness that is overwhelming.

'Is this going to take much longer?!!!'
Your spine feels like it is made from jelly and is not strong enough to hold you upright. Muscles feel weak and as if they just don't want to work in harmony and help you move. My overwhelmed-ness (I know that's not a word) starts from my spine and works towards the front of my body. I am sure, if I allowed myself to, I would just double over and my upper torso/head would be down by my knees. I feel incredibly floppy if I have to stand still for more than two minutes at a time. It takes an awful lot of energy to be vertical; that is something I feel non-sufferers take for granted.

Recently I had to pop into Patch's vet practice to pick up some, urgently needed, tablets. I walked in and saw just one customer standing at the counter. I thought 'phew, I wont have to queue for long'..I was soooo wrong. This woman was like a mystery shopper, she asked every single question and had experienced every single scenario known to man. After a minute of waiting I started to get fidgety, if I stood still I felt my energy draining away. Two minutes in and my core started to throb, my body
needed to sit. Unfortunately, the seating is away from the desk and I didn't want to lose my spot in the queue. I could feel myself literally wilting, my head and shoulders were steadily, millimetre by millimetre, getting closer and closer to the floor. I was getting hot as my body was trying to get the energy to keep me vertical. Anyone watching me would have thought I was a moody so-and-so because I got extremely restless. Not because I was impatient but because I was getting more and more uncomfortable and vapour-like. Ten minutes in and I had to lean on the counter; my legs were starting to buckle and my head felt like my toothpick neck couldn't support it. Twelve minutes passed and I had to hold my head up with my hand. I was served at the fifteen minute point and it took two minutes to get the much needed tablets. A quick drive home followed. I was horizontal five minutes after walking through my front door. The rest of the evening was spent shivering with the inability to feel limbs laying on my bed.

It makes me chuckle when people say that offices in the future won't have chairs and that office workers will do all of their work standing up as it is better for your health....ha! I obviously won't be working in an office at that point!


Sally xx