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Wednesday, 22 November 2017

Sore Throat? Is That What This is Called?

Hi,

Since starting Foggy back in 2014, I have complained about having 'M.E sore throats'.  They kinda go along with the notion that M.E feels like having flu every single day as its baseline. Without waffling on about biology, it's to do with having glands in that part of our body that flare up when our body wants to fight infection (an infection we don't have - stupid M.E). For years, I've had people back away from me whilst telling me to 'keep away, I don't want your
These don't work
bug'. I've lost count of the number of times I have had to explain that I am not contagious, that it is an M.E sore throat and not a germ and snot-filled bug.


However, my sore throats have changed. They now not only affect the top of my throat/back of my mouth but also the whole length of my throat and neck. Right down to just above my collar bone. I know what me neck usually feels like and to me it feels swollen. Swallowing is often difficult and it feels as if I have barbed wire/glass inside my throat. I have become concerned that it might...just might...be something other than M.E so I went to my GP. I was told that my glands didn't feel swollen (REALLY?!) and they couldn't feel anything wrong. I was sent for a general 'tiredness' blood test for 'reassurance'. Not surprisingly, my blood test came back 100% fine and dandy. 

So it is 'just' plain old M.E then? Must be. I have told Foggy Followers that I have Hypermobility Syndrome too. This manifests itself in my neck, as well as most other joints. I now think that the sore throat and painful neck joint combo is why my neck/throat is so painful at the moment. I've struggled to hold my head up when I am tired for the past 11 years (since I was diagnosed with M.E) but now it is painful too. It's weird that both my neck and throat have decided to flare at exactly the same time!

Whatever the cause, it is constant and blooming painful. M.E severity may settle and remain static over time but I am finding that symptoms change and ebb and flow. What's coming next? It's a mystery!

Love Sally
(and Foggy OBVIOUSLY)

p.s Don't forget to donate! mefoggydog.org

Sunday, 19 November 2017

The Past Month has Been EPIC!

Hi!

Foggy's paws are back in the UK but won't be back in Foggy HQ until Tuesday. So much has been going on over the past 4-6 weeks I figured it made more sense to round it all up in one hit.

Unrest
It was an absolute honour to host a screening of this amazingly powerful film. However, it was a FREIGHT TRAIN that completely took over my life for the best part of 6 weeks. A number of people who came to the screening are now thinking of hosting their own screening which is fantastic. One word of warning: If, like me, you are a one woman band and do all the work yourself, please consider if you have the energy to do so first. My M.E has taken a constant hit since the moment I applied to screen the film. Finding a venue, organising the logistics, shop, insurance, promotion, marketing....the list goes on and on. Thank you so much for my friends Cat and Louise, and Rotarians Adele (and
partner Tyler), Tim and Janice for helping me out on the night. So much stress had caused my brain to stop working properly. If it hadn't been for them I don't think it would have been the success that it was. I did my talk on auto-pilot, I have absolutely no idea what I said (apart from what was on my prompt cards!). The payback has so far lasted 3 days..... more to come I'm sure. It was lovely to put faces to Twitter handles and Facebook profiles. I had a queue of people to talk to after the film finished, it was great to meet you all. Thank you to University of Portsmouth CIO, Andrew Minter for giving me such a warm introduction. He nearly had me in tears before the film even started! I've known Andrew for a number of years and he has always been supportive of Foggy and I. Although it wasn't a University screening he came along to support our efforts. 

Cuba Baby!!

Thank you Daniella and co for taking Foggy to Cuba for 2 and a bit weeks! He had a great time! I love the photos! We are working out the mileage but as he went via Paris it'll be quite a bit to add to his mile-o-meter I'm sure!

Click here to see the photo album - Cuba baby!! Yeah!!

Milan

Foggy has just spent the weekend in Milan with a lovely lady called Cvetelina and her friends. They are all members of Roteract (Rotary for young people) and Foggy got treated to lots of walkies around the city and a posh dinner. Nice! Again, mileage is being calculated.

Click here to see the photo album - Milan

School of Social Entrepreneurs

So, I announced this at the screening as it was, appropriately, Global Social Enterprise Day. As I have hinted at over the past few months, Foggy is getting bigger. I applied for a place on the (brace yourselves for a long name) Lloyds Bank Social Entrepreneurs Start Up Programme, in partnership with the School for Social Entrepreneurs (SSE) and jointly funded by the Big Lottery Fund. I got a place! I started the course in September. I was going to wait until the new year before making an announcement but the timing seemed right. Foggy is turning into a social enterprise. He will continue campaigning as he does now but in the background I will be running the business element. This is the last campaign Foggy and I will undertake for the benefit of the ME Association. We will still be raising research funding but will crowdfund for specific projects/researchers. It will probably (not set in stone) involve training for healthcare professionals who do not receive M.E/CFS training in med school. I will deliver M.E from the human perspective. Education professionals will be trained in how to support ME/CFS people. 21,000 children and young adults have M.E/CFS in the UK. They need support. The course is for one year and I will receive training and mentoring. Exciting and very tiring times ahead I'm sure. I will of course, be managing my energy levels but I know my symptoms will take a hit. I have no idea how the social enterprise will pan out. As you are all aware, it is entirely dependent on healthcare people WANTING to learn about ME/CFS.  Keep your eyes, arms, legs, fingers and paws crossed!

2018

There is still plenty of space in Foggy's itinerary in 2018. Please get in touch if you would like to Foggy-sit. He'd love to come and either stay in your home (if you live non-UK) or go on holiday/business trips with you! Email Sally - mefoggydog@gmail.com

Foggy is off to Northern Ireland at the end of this week. He's looking forward to spending time with one of his favourite ladies - Claire. He's met Claire twice before and always enjoys the time he spend with her. He is going on stage with her! Exciting!

Money Raised so far

Foggy's total currently stands at £1001.09!! Whoop!! Fantastic. There is still a long way to go to reach £10k by next July though so keep donating! Thank you to all who have donated so far. Please donate via mefoggydog.org. Thank you.

That's it - you are all caught up!

Love,

Sally AND Foggy (OBVIOUSLY) xx

Monday, 13 November 2017

Open Letter to Blue Peter

Hi,

Did you know that Myalgic Encephalomyelitis (M.E), otherwise known as Chronic Fatigue Syndrome (CFS), affects over 21,000 children and young adults here in the UK?

ME Foggy Dog is a UK-based, social media driven, charity brand. We currently raise awareness and funds for the ME Association. Foggy, a soft toy, is a globetrotting adventurer who travels the globe raising awareness with every paw-step. This is Foggy, he met Mickey a couple of month ago in Orlando. He was not happy. Meeting GOOFY is on his bucket list. Goofy was nowhere to be seen!

Since July this year, he has travelled 41,087 miles. He is on a mission to travel 250,000 miles in one year. Paws crossed he'll do it!

What is M.E?
It is a severely debilitating and life-altering illness that affects 250,000 (low estimate) people here in the UK (17 million worldwide - very low estimate). Due to the ridiculous name Chronic Fatigue Syndrome, the general public assume that it is 'just' tiredness. WRONG. There are a wide range of symptoms including chronic pain, dizziness, IBS, migraines, and cognitive issues.
Here is the ME Association's description of M.E What is M.E?

I am contacting you to see if you would consider highlighting ME/CFS on Blue Peter? There are many housebound/bedbound young sufferers who are fans of your show. It would be great if you could help ME Foggy Dog to show them they are not forgotten about. We know they are there and we know that they are struggling.

There is a wave of recognition of the illness happening right now. Use the opportunity - Get on the awareness train (*Foggy* Choo choo!) I would urge your producers, presenters and back stage staff to watch the award-winning documentary Unrest. It shows the people you can't see, those people who are invisible in society because they can't break free from their beds. ME Foggy Dog is hosting a screening of the film this Thursday (16th November) in Portsmouth. You can also download it on iTUNES, Google Play and Vimeo.

I look forward to hearing from you.

Best wishes,

Sally Callow
MEFoggyDog.org


Saturday, 4 November 2017

Could it be M.E or Maybe Fibro? It's a Mystery!

Hi,

I have a very painful right side of my body and no doctor has ever been able to put their finger on what caused it or why it has been long-term pain. Let me explain.

I had skin cancer back in 2012, it was a very 'not bad-looking mole' that didn't look quite right so I got it checked. I had the biopsy done and was told it was a melanoma. I had it cut out. Sounds simple doesn't it? This 'simple' procedure has lead to 5 years of bouts of severe pain and tingling in my leg. My M.E advocacy, and hearing other M.E peeps stories, is now causing me to wonder if it is M.E or Fibro related.

The pain started as I walked out of the outpatients department. In my mind, the pain was triggered by the surgery. I wondered if it was triggered by the position I was laid in. I was laying rigid, muscles taut, to hold myself in a certain position, could that have caused my muscles to spasm as my leg was cut into? I made a complaint to PALS (Patient Liaison Service) and they investigated for months. They concluded that I'd had a pre-existing condition that was caused to flare by the surgery. Really? I had never had pain in that leg prior to that afternoon.

My GP had no idea what was causing the pain and was lead by PALS. They said apart from taking strong painkillers there was no treatment available. However, I was referred to have my nerves checked, I listened to my nerves dancing around in my body when the consultant stuck the probe in my leg. 'Nothing wrong there' he said. 'The surgery has not damaged your nerves'. Maybe not damaged.....****ed them up...yes!

I found it difficult to walk for about a year and limped around a lot, I never had use of crutches, etc, but with hindsight I think that may have added to the problem so I am glad that I struggled to get around. I was able to build my muscles back up again.

What did the pain feel like? It was a shooting pain that went from my inner mid-thigh up to my groin and back again. The pain would strike out of nowhere and completely take my breath away. I also had a pins and needles/ants crawling under my skin type sensation up the front of my thigh and in
'Nurse' Patch - On the case xxx
my foot. Very disconcerting and I used to give myself a deep massage to try and push away the feeling. Didn't work though! My right knee started to give way too...what the heck was going on?

Luckily, during this time, I worked full-time and was able to pay to see a private Chiropractor. He was very good! He said that the surgery had caused the muscles in the right- side of my body to spasm and that's what was causing the problem. My nerves were tingling because they were trying to repair themselves. He showed me how my nerves had gone exceptionally tight from my foot up to mid-back (think bra-strap). I hadn't realised it before but nerves are like a tree root that run continuously throughout your body. I don't know what I thought nerves were like before but not that! He massaged the nerve 'root' in my right side, I hadn't realised it but the nerve problem had caused my right bum cheek to get tense and sore too! It was only when he did deep massage on it that I screamed in pain. The pain in my inner thigh was so intense I nearly vomited during a few sessions. 8 sessions later, the pain had subsided, the nerves were doing more of a waltz than a tango in my thigh and he taught me how to stretch to alleviate symptoms.

He also told me off for having appalling posture (I have Hypermobile joints - hardly surprising!) and told me I MUST sit properly in chairs otherwise my nerve would tighten back up again. Does he not know how hard it is for a M.E sufferer to sit upright? My go-to position of choice when watching telly is SLOUCH! I find if I lay in bed for too long or lay propped up on pillows, the problem starts again. I hate it. I need to just lay but this pain needs constant attention. This nerve problem now also affects my right arm, hand and right side of my neck. JOY! (As far as I can tell!!) My physio has given me similar stretching exercises for my arm/hand.

I don't have a medical degree, I have no idea if what he told me was right. I now find that if my nerve symptoms flare up, doing his simple stretching exercises helps. I can feel the tightness ebbing away. It works for me and that's all that matters, right?

I guess my question is this. I had M.E when I had the surgery. Is this pain another M.E symptom or something completely separate? 

Any thoughts would be welcome.

Love Sally
(and Foggy OBVIOUSLY)

Don't forget to donate!
Donate via mefoggydog.org, thank you and Foggy snogs xxxx

Thursday, 2 November 2017

Loneliness and M.E

Hi,

The subject of loneliness is a hot topic at the moment. MPs are getting involved, many local cafes in Portsmouth are holding 'Loneliness dining' for people who need support and some company. I have, fairly recently, met a lovely lady called Cat who is a social entrepreneur. She works hard for the benefit of our local community. She is passionate about helping the elderly in terms of loneliness, inclusion and transport. Her new business is called Time for Help (her Twitter handle is @TimeforHelp1) and it is a very valuable scheme in the community. Good luck with it Cat! Anyway, talking to her about inclusion and loneliness made me think about how M.E affects us in terms of loneliness.

I wrote a blog a few years ago on a similar subject but I want to revisit this topic - 2015 blog

When we are laid on our beds, desperately clawing back energy and trying to calm our overstimulated brains and bodies, who do you think is keeping us company? I may live with my parents, but they don't sit silently in my room, keeping me company during my 'payback'. They are

getting on with their usual daily lives. They allow me to be as independent as I want to be in terms of my illness. Sometimes, it is to the point of stubbornness, I will not allow this illness to tear away
every shred of independence that I once flourished in. So I choose to struggle instead of asking for help. Many sufferers don't have the choice to be stubborn. I am well aware of that and consider myself to be exceptionally lucky. Every day, I leave their company to go into what sometimes feels like solitary confinement because my health forces me to. It's enforced loneliness and isolation. I'm a naturally sociable person and being alone is against my natural instincts. My body seems to know when it needs to shut down though so I have to be guided by that instinct.

The slightest noise can hamper my 'recharge' time. Sometimes I am able to watch TV while I rest but not all the time. I often lay silent with my eyes closed just 'being'. If I have flat-lined then I can't talk or move easily. This doesn't allow for any human contact. Sometimes I have to lay there for a few hours. IT'S BORING and makes me feel incredibly lonely. Especially when my arms and legs are feeling so heavy and numb that I can't feel them. I yearn for the 'good old days' when I used to be out 3-4 times a week, dancing the night away with friends or going to friend's houses for a catch up that lasts until the early hours. Those days are a distant memory.

I know you can feel empty in a crowded room so having company isn't really the issue. I feel lonely being the only ME sufferer in my group of friends. As much as my circle of friends now know a lot about M.E, only sufferers know the true nature of the illness. My feeling of loneliness flares when I get messages from friends asking me out for a coffee or when I see their posts on social media. Events that, back in 2006, I would have been the first to sign up to. 

Our M.E community is fantastic for many things but doesn't really help with my feelings of loneliness. Everyone on Foggy's Twitter feed are loving and supportive but when it comes down to it, it's just BED and me.

Love

Sally
 (and Foggy OBVIOUSLY)  xxxxx

Saturday, 28 October 2017

Diagnostic Criteria

Hi!

I'm in Cuba! It's all exciting stuff and I can't wait for Sally to show you the photos of my adventure! I have quite a lot of new followers, many of whom are learning about M.E through ME Foggy Dog. So, today I have asked Sally to go back to basics in terms of how we get diagnosed with M.E/CFS. Here goes.

Foggy snogs xxx

Hello,

Anybody remember Systemic Exertion Intolerance Disease (SEID)? I haven't heard it mentioned since 2015 when I gave my first awareness talk. However, the diagnostic criteria still seem the best way forward to me, in terms of what to look for when looking for a diagnosis.

I've copied this bit from the linked article below:
The new criteria is based on 4 of 5 core symptoms, requiring:
    • A substantial reduction in activity
      • More specifically: A substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social, or personal activities, that persists for more than 6 months and is accompanied by fatigue, which is often profound, is of new or definite onset (not lifelong), is not the result of ongoing excessive exertion, and is not substantially alleviated by rest
    • Post exertional malaise
    • Unrefreshing sleep
    • Either cognitive impairment or orthostatic intolerance
Diagnostic criteria of SEID

As I said back in 2015, I have ALL of the above. If I ever doubt my diagnosis all I have to do is refer back to the criteria to be reassured that, yes, I do indeed have the dreadful illness that is currently known as ME/CFS/SEID...and a few other abbreviations! I have lost count of the number of times I have spoken to other sufferers who, on good days, wonder if we have been misdiagnosed or are living in a dream world (why else won't people accept us as ill?).

Recently, I have met a wide range of people who could benefit from looking at the above criteria. A few of the people I met are newly diagnosed and haven't had the illness fully explained to them by
their healthcare professionals (SURPRISE!) and only know of the symptoms that they have themselves. They don't have a clue that there are 17 million (very, very...very low estimate!) other people around the globe with the same illness, though perhaps at a different level of severity. They don't know that there is a fight going on. They simply accept the diagnosis and blindly struggle through every day, accepting bits of therapy that are thrown in their direction occasionally. How do I know that? Because I was one of those people. I only realised there was a fight and a desperate need for research when I started Foggy. If I hadn't started Foggy, I would still be clueless in terms of the wide range of symptoms, many of which I don't personally suffer from. Who knew M.E patients are in pain? I didn't. Because I am lucky to not have that symptom. I have also met someone who is in the process of being diagnosed. She is scared to receive the diagnosis as she acknowledges that it would be a life-changer. I have encouraged her to read my blogs to get a general idea of M.E, from a human perspective, that is free from medical jargon. I hope that she reads them (hello if you are reading this!). I think it is better to be armed with info than fearing the unknown.  I've also pointed her in the direction of the ME Association for support and medical info. Fingers crossed, she will have been worrying for nothing and won't get a ME/CFS diagnosis.

On telly yesterday, Dr. Charles Shepherd (ME Association) and Jen Brea were promoting Unrest and raising awareness of ME/CFS. Dr. Shepherd said that it is relatively easy to diagnose ME/CFS. It may well be but it needs to be clear that many of us go through years of tests, unsatisfactory visits to the doctor's office and stress before we receive that diagnosis. I had ME/CFS symptoms 3 years before I received the golden ticket AKA a diagnosis. My story is a common one. 

Here is a link to ME Association - What is M.E?   http://www.meassociation.org.uk/about/. Check it out for more info.

Love,

Sally
and Foggy (OBVIOUSLY) xxxxxxxxx

Sunday, 22 October 2017

Differences between Fibromyalgia and ME/CFS

Hello!

Sally is going to attempt to write about the difference between Fibromyalgia and ME/CFS. The illnesses are very similar and often get confused...here goes! She has brain fog today so this could be interesting! Love Foggy xx

Hi,

Since Foggy started in 2014, I have made no secret of the fact that biology is not my strongest subject. I always explain medical stuff as if I was having a conversation in a pub. Jargon free and simple! 

The cause of this blog was an interesting conversation my mum had at a doctor's appointment earlier this week. She was talking to staff about my Unrest screening and was explaining that I had ME/CFS myself...blah blah blah. She told me about the conversation when she got home. The bit that interested me was when the staff said this:

' ME/CFS? That's what Lady Gaga has isn't it? Well done her for being an
advocate of the illness'.

See?

Two things concerned me.
1. NHS staff don't know the difference between ME/CFS and Fibromyalgia
2. Lady Gaga 'coming out' may add to our issues of getting people to understand ME/CFS.

The two illnesses are exceptionally similar. But, from what I can make out, Fibromyalgia sufferers do not suffer from Post Exertion Malaise. This means that exercise is part of their 'treatment'. This could be why many ME/CFS sufferers are advised to exercise to manage their symptoms. Anyone who keeps up with our political fight will know that Graded Exercise Therapy (GET) has been slammed for causing symptoms to dramatically worsen in ME/CFS patients.

Many people have been diagnosed with both ME/CFS AND Fibromyalgia. My foggy brain can't understand how you can have both at the same time. If one benefits from exercise and the other worsens. If anyone would like to comment and explain that to me I would be grateful - JARGON FREE though please!

One thing is for certain, Lady Gaga definitely, 100%, cannot have even a smidge of ME/CFS.  She would not be able to perform those magnificent dance routines if she had our illness. I am yet to watch her documentary Five Foot Two but can say that Post Exertion Malaise would wipe her out 24-48 hours later. You cannot push through pain/fatigue with ME/CFS. That said, I am not down playing Fibromyalgia, I understand that pain, and fatigue-wise it is just as life destroying as ME/CFS.

There have been rumours in the medical world that ME/CFS  and Fibromyalgia could possibly be the same illness. I can't see how that can be. Yes, they are both chronic illnesses with many of the same symptoms but there are also distinct differences.

I think the sooner the healthcare professions see that exercise is good for one but not the other the better!

I hope that helped to clear up some confusion....I hope I haven't added to it!

Here are some links that you might find helpful.

www.fmauk.org - What is Fibromyalgia?

NHS Choices - Graded Exercise Therapy

Love,

Sally xxxx

Don't forget to donate and help Foggy to raise funds for ME/CFS research. Donate via Foggy's Fund. Thank you x