Guest Blog - Rachel's Experience of M.E.

Hello!

Foggy asked for guest bloggers to write blog posts for him; this is a guest blog post from Rachel, a mild M.E. sufferer.

Hi,

Glandular fever swept through our sixth form college like wildfire; which isn’t that abnormal amongst a group of 17-year-olds I guess. Except I never seemed to get better. I was halfway through the second year of my A Levels combined with Dance Foundation when suddenly I was exhausted all the time, with a permanent sore throat, swollen glands that never seemed to go down, migraines and aches and pains all over. Months and months of medical tests followed, all of which proved inconclusive. In May 1992, I received a diagnosis nobody wants to get, especially someone just weeks away from their exams. I had M.E.

In the early 90s M.E. was a relative unknown. It was known, here in the UK, as Yuppie flu because the only people who had been reported as getting it were burned out city workers.  What did I have in common with them?  There were no support groups, very little research and nothing anybody could tell me.

I somehow managed to make it through my final exams but all I can really remember about that period is being bone-achingly tired and having to take so many anti-inflammatories that I’ve had stomach issues ever since.

Rachel

Instead of going to university that Autumn I was fortunate enough to get the opportunity to go and stay with my aunt in Tasmania, Australia. The sunshine and slower paced lifestyle did this body good and within a few months I was starting to feel better, needed fewer painkillers and had put on some of the weight I’d lost. Naively I believed I’d beaten this thing. I didn’t know then what I know now; that M.E comes and goes in waves. That, for me at least, it is triggered by stress and overwork.

I returned to England to go to university. Half way through my degree those familiar symptoms came back. Just in time for my final exams, the M.E. returned with a vengeance. You see what I mean about it being triggered by stress? After a year of recuperating I moved to London to start my first “proper” job. You probably won’t be surprised to learn I was back living with my parents and all my symptoms flared up again within 18 months. That’s when I realised I had to stop this “boom or bust” road to recovery, and it’s when I started doing a bit of research. Over the next few years I tried a lot of different things from Acupuncture to Hypnotherapy, from C.B.T. to Reiki and I got a few new diagnoses, Fibromyalgia, Endometriosis, I.B.S. and Congenital Scoliosis. I tried various remedies from the kind you get on prescription to homeopathic and herbal. But the thing that seemed to work for me was Yoga.

You see, I always loved to move my body. From early ballet classes to my Dance Foundation I was never happy sitting still. The problem was since my M.E. diagnosis I found a lot of exercise just completely wore me out. But Yoga was different. I’m not talking about the sort of Yoga that is all over social media these days, Hot Yoga, Power Yoga, Cardio Yoga. No, this was gentle, it involved a lot of lying on the floor, gentle stretching and deep full breaths.

Some days all I could manage was to lie on the floor, other days I could do a bit more. Over time, with patience, practice, and a lot of guided relaxations, I was able to practice gentle sequences. My energy levels improved, I was slowly able to do some other gentle exercise too (walking, light weight training). After a couple of years I was back at work full time. And with regular Yoga practice I could manage my energy better. I didn’t have those “boom and busts” anymore. Don’t get me wrong though, I still had bad days. I still do.

These days I own a little Yoga studio in Cambridge. I teach all kinds of people but I run some classes that are dedicated to people with M.E., Fibromyalgia and similar chronic conditions. Not only is this a chance for them to do a little movement and a lot of relaxation that is suitable for them, but it also gives them a chance to meet other people with M.E., something I never got to do. We keep it very positive in class and try not to moan too much about our symptoms. Everyone keeps coming back so it seems to be helping! Of course Yoga isn’t necessarily suitable for everyone with M.E. and it might not help you in the same way it helped me. My point in sharing all of this with you is to never, ever,  give up hope. You never know what is round the corner. I still have bad days, as I said, but my once moderate M.E. is now mild, even on a bad day. I’ve come a long way baby.

Rachel is a Yoga and Pilates teacher, massage therapist and studio owner in Cambridge UK. Check out her website for more info about M.E. and Fibromyalgia http://massage-movement.co.uk or follow along on Instagram and Twitter @rachel_fusion

*Foggy* Thanks Rachel - Doggy snogs xxx

Self-doubt

Hello,

Foggy is resting his paws in Deal, Kent; waiting to jet off to the Philippines on Sunday morning. He has given me permission to write another blog post.

Hi,

I have made some truly wonderful friends through this campaign and I hope these lovely people are now lifelong amigos. They constantly praise my efforts and spur me on when, on rare occasions, my enthusiasm and positivity wanes. I have never met these people and yet we are like kindred spirits; I don't feel I could have coped without their support and inspirational emails.

Here are a few extracts showing the love these men and women show me on a regular basis....I am very lucky xx

'I never know if it's weird to tell someone I'm proud of them but I really am. You've done so much to raise awareness and funds, I think you're amazing. How anyone has the courage to stand up and present for half an hour with brain fog is beyond me!'

'I KNOW you don't appreciate how good the campaign. That's why I keep telling you how great it is!!'

'You know I heart Fogs. And love everything you do. Don't underestimate the impact you're having on people with ME -to know you're championing the cause even though you're ill yourself means the world x'

I am writing this blog because I am constantly filled with self-doubt that this campaign isn't as good as many people keep telling me. I want to explain why. When I started this campaign I had hoped that

people that I am in daily contact with would read all about this dreadful illness, engage with the campaign and realise why I am like I am. However, many of the people closest to me: friends and work colleagues, are still no closer to understanding the illness than they were on day one of this campaign. I have discovered that you can't force people to engage with an invisible illness. Engagement with the campaign in my workplace is probably around 5% of staff...such is life. 

Most of Foggy's donations have come from sufferers or family/friends of sufferers. It is unacceptable that sufferers have to do their own fundraising. As I said in my International ME Awareness Day talk, more funding should come from the world's governments, as is the case with other illnesses.

It is not possible to determine whether Foggy's non-suffering Followers have engaged with the M.E. awareness aspect of the campaign or whether they are just liking the character of Foggy. If any non sufferers would like to get in touch to tell me they have been made aware that would be great. I only ever receive feedback from sufferers. As lovely as that is, there is no point in raising awareness amongst people who already know everything they need to know! Foggy and I love all of our Followers regardless of their state of health; we just wish we could tell whether our mission of raising awareness, amongst non sufferers, is being achieved.

Then there is the media. Despite my best efforts I simply cannot get any national newspapers, magazines or TV programmes to cover Foggy and his

World Tour. This gets me wondering whether my campaign simply isn't good enough for their attention. All of the positive feedback I receive from Followers completely clashes with the white noise coming from the media. I have lost count of the number of emails, letters, tweets, facebook messages I have sent trying to highlight the campaign but to no avail. I find this incredibly frustrating, especially when I see some of the rubbish that actually makes it into these publications and programmes. Sometimes it feels like I am banging my head against a brick wall. It has also been impossible to get the acknowledgement and support of a celebrity...any celebrity will do....just to help spread awareness quickly and further afield. Again, no replies have been received from A-Z list celebs. Believe me, I am trying!

Despite all of my self-doubt I will be forever grateful for the support and love I have received from thousands of people around the globe. I just hope I am doing a good job.

Sally xxx

International ME/CFS Awareness Day - May 12th 2015

Hello,

It was International ME/CFS Awareness Day on the 12th May and to mark the occasion and to 'do my bit', I gave an informal, awareness raising talk in a lecture theatre at the University of Portsmouth (Thank you for allowing me use of the facilities for a private venture - much appreciated). In the audience was a good mixture of ME sufferers, family and friends of sufferers and people who have no link to M.E. who just wanted to learn and appreciate how nasty this illness can be.

Foggy made an appearance on the night, between trips to Tenerife and the Philippines. He even had his own mini movie at the end!

I wanted to keep the talk as light and engaging as possible. Bamboozling the audience with medical jargon and politics wouldn't help to raise awareness - exactly the same method as I apply to the Foggy campaign.

Here is the film of the talk. Apologies for the intermittent sound problems....it was a learning curve.....don't do the moveable cardigan/long hair combo as it scratches the mic!! You can still hear what I am saying though. I am very proud of myself (pat on the back for me) for doing this. I haven't ever spoken in public to more than 15 people and this was a big personal ambition/achievement. Had major brain fog on the 12th May and so to be able to string a sentence together, let alone do a half an hour talk, was a huge relief!! 

https://youtu.be/CLRiImmWDxQ

Please watch the whole thing; I put a lot of time and energy into planning, designing slides and finding resources to put across my message about how dreadful this illness is.

My immense gratitude goes to three members of Team Foggy. To Andra for her I.T. prowess and help. Her skills and knowledge were invaluable, she made the slides more engaging with animation than they would have been if I was left to my own devices! (The animations aren't showing up on the video which is a shame but....they were there on the night! Promise!) She also helped on the night to make sure everything ran smoothly. Ant (Anthony) filmed the talk for me and did the post-talk video editing; and thanks go to Emma for taking great photo memories of the evening. These lovely people gave their time and skills for free; they just wanted to help me raise awareness. Thanks guys.

Love,

Sally xxx