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Sunday, 13 August 2017

Invisible Disability

Apologies, I have had to take my eye off the M.E ball for the past 6 days.  I have been doing the bare minimum for Foggy and I feel bad for it. As you may or may not be aware, my dad has been exceptionally ill since Monday and his diagnosis required ambulances, A & E and a hospital stay. He is now medicating at home and is on the mend so hopefully, I can get back to normal now! My mum doesn't drive so I have been the taxi driver taking him to and from various hospitals for tests, appointments and overnight stays. That, when added to the stress of having an ill loved one, has wiped me out! Since 11 am yesterday, I have slept for 15 hours.....that is a record for me! Do I feel refreshed? As if!

Anyway, I thought I would write about an experience I had in A & E on Wednesday evening. I drove
*Foggy* Where is Goofy?!
up to the hospital at 9.30 pm and we were whisked straight into A & E (we had been called and asked to go up ASAP due to blood results). Whilst my dad was being taken care of my mum and I were shown the seating area. Each patient is allocated 2 seats. One for the patient and one for a visitor. I am 100% appreciative that priority should be given to patients and so seating for visitors is not a top priority. That is not what this blog is about. This blog is about M.E being an invisible disability.

In between tests, and being prodded and poked, my Dad came and sat with us in the seating area. Now, I've already said that there were only 2 seats.  My mum uses a walking stick. She doesn't have a disability but she does have joint pain and uses the stick for balance. I don't have a walking stick.

I was stood for around 20 minutes. I couldn't pull over a chair as beds were being wheeled past that area and space was limited. I was dying on the inside! My head felt like it was going to hit the floor at some point and my spine felt floppy. My mum offered to give up her seat (cue funny looks from the people in the bay next to us). Within 1 minute....yes...1 minute, the people next to us moved along to free up a seat for my mum...who is NOT disabled. I could feel the disapproval from the seat-movers coming in my direction. Could I be bothered to explain that I have M.E, that it is a real condition and that it is a disability? No.

Let me clarify - My mum is in her late 60s and I wanted her to be sat down but in that situation, who would benefit the most from the seat? I would have to drive us home and so needed to preserve energy. As we moved to other areas, more standing was required as there was no seating available. AGAIN, I understand that in an area where crash teams are usually present, seating for visitors is not a priority! I ended up leaning on a sink to try and stay upright! My words became more and more slurred and we had to leave early (12.30 am) to make sure I was safe to drive. My Dad was happy in the knowledge that he was being taken up to a ward for an overnight stay so I didn't feel TOO bad for leaving him!

This is the second seat incident in about a month. The other was during our trip to Winchester. My dad had driven us from Portsmouth to Winchester as he understood that I needed as much energy as possible for my important Foggy-related meeting. We got on the Park and Ride bus to go into the city centre.  My Mum could sit in the 'limited mobility' seating but I couldn't. Foggy was not impressed - he wondered why his disabled P.A was not eligible for special seating even though moving around is difficult due to energy and not pain.

I am actually considering taking some kind of prop on similar occasions. Purely because I don't want to experience the stigma surrounding invisible disabilities. I don't think walking sticks or other mobility aides are a badge of honour or anything but at least they are a visible indicator of impairment.

Love,
Sally (and Foggy obviously)

p.s Foggy is currently in Orlando on the hunt for Goofy!
p.p.s...Excluding this latest trip - his mileage stands at 9010 miles!

Saturday, 5 August 2017

Open Letter to Eastenders

Hello,

I have a question.

Why has Myalgic Encephalomyelitis (M.E) not been represented in any of your storylines since your show started in 1985? It affects 250,000 people here in the UK and EVERYONE knows someone who has the illness.

I am asking you to be brave and bold, highlight an enormously misunderstood life-altering illness and help the M.E community to raise awareness. It is a highly complex illness but with subtlety and a long-term plotline, I feel it would be possible to truly represent this invisible disability.
This is me. I don't LOOK sick do I?

You were groundbreaking back in the 80's/90's with Mark Fowler's HIV/AIDS diagnosis. Do the same again with M.E. HIV/AIDS affects 101,000 people here in the UK (2015 rough estimate). M.E affects more than double that and yet receives a very small percentage of the recognition and research funding that HIV/AIDS receives.

Nancy Klimas, MD, has more than 30 years of professional experience (see biography below). She has previously stated:

“My H.I.V. patients for the most part, are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it.”

The same can be said for the M.E situation in the UK.

M.E has never been given more than a fleeting mention in mainstream dramas (Doctors, last year). This is your chance. Be the first, again...be bold!

You have highlighted Stroke, Post Partum Psychosis, PTSD, Dementia, blindness, a restricted growth condition, Head Injury, Miscarriage and Breast Cancer to name a few, and yet you haven't represented a large segment of society by not dramatising a chronic illness that destroys lives and affects people of any age, race or gender. You are not truly representing society by omitting us.

I have ideas as to how M.E could be included within your show, I'm happy to share if you are interested. As I have said, it will need to be subtle and long term but I believe it IS possible to act out an invisible disability.

Kind regards,

Sally
Founder of ME Foggy Dog - see mefoggydog.org.

P.s. I have posted a hard copy of this letter to you.

Biography - Nancy Klimas, MD, has more than 30 years of professional experience. M.D Director, Institute for Neuro Immune Medicine, Nova Southeastern University, Director, Clinical Immunology Research, Miami VAMC, Professor of Medicine, Department of Clinical Immunology, College of Osteopathic Medicine, Nova Southeastern University, Chair, Department of Clinical Immunology, College of Osteopathic Medicine, Nova Southeastern University,Professor Emerita, University of Miami, School of Medicine).

Sunday, 30 July 2017

Read Cat's M.E story

Foggy has asked M.E sufferers to write him a blog post on their own personal M.E story. This lovely lady called Cat met Foggy at his launch and has written this blog post for him. Please read how M.E has affected her life.

Hello Foggy,

I would say my M.E journey has been a slow one because I think it started back in 2009 when I had decompression sickness after scuba diving. I never felt fully recovered and started becoming tired or ill easily and not able to concentrate as much.

I caught a virus in 2012 and became very sick, soon spending most of my time after work either sleeping or staring into space in a fog of confusion. I had the brain power to make it through work and get home and that was about it! In 2015 was diagnosed as having hypothyroidism and felt like
Cat xx
my body was slowly shutting down. When medication did not help I kept returning to the doctors saying my symptoms were worsening, they would send me away saying there was nothing physically wrong with me as blood tests showed my thyroid was now fine with medication.

I changed doctors several times and in 2016 one suggested Chronic Fatigue Syndrome/M.E. I had no idea what it was but I guessed from the name! When I read the symptoms on the pamphlet it was a light bulb moment. “Great, they'll diagnose me and I'll pop a few pills and I'll be cured!”

Nope. No known cause means no known cure. So I began counseling to help manage my symptoms and I am doing a course of Graded Exercise Therapy. The idea being I slowly get used to being more active and my symptoms will improve. So far I can't say it's working but I'm still hoping something will change. (*Sally* Cat is aware of the current controversy surrounding GET but is giving it a try. She will stop if she feels it has a detrimental affect on her symptoms).

I have had mixed reactions from people when I tell them I have M.E; some are aware of it and understand when I frequently cancel plans or leave places early with pain or fatigue. Some don't know what it is, do a bit of research and then are ok about it. But sadly some are unaware that it is a 'real' illness and appear to disbelieve me, which is really upsetting. I know its hard not to judge a person on their outside looks but it is hurtful when people say things like “well, you look fine to me” or “Ooh, I'd love to not have to work”. I have been called lazy a few times and told I'm not trying hard enough but I have learned to ignore those people and spend my time with the good ones!

My husband, my family, and my friends are fantastic. Whether its helping me climb the stairs each night, coming over and cutting the lawn, washing up, giving me a shoulder to cry on or just sitting together in calm quiet so there is someone to help if I need something and can't do it myself.

I have been off work now for 9 months because of M.E and am just beginning to go back, doing a few short shifts each week but it is difficult as it has exacerbated my symptoms again. My most common ones being exhaustion, pain, migraine, sensory sensitivity and inability to concentrate. (So I'm glad I could write this without it turning to gobbledegook!)

I am still in touch with the other participants of the counseling group I attended and we talk about things that help us, we vent our frustrations and we support each other when things can get a bit rough. I think the most important thing for any long term condition is support and I am so glad I have my close circle of family and friends. Without them I'd be worse off for sure.


Cat xx


Please donate to Foggy's Fund. Every penny goes to M.E medical research. Donate via mefoggydog.org. Thank you.

Sunday, 23 July 2017

Crazy What Ifs!

Hi,

Foggy is in Tuscany! He had his first plane flight of this World Tour yesterday and loved every minute...I'm sure his tail will have wagged throughout the journey....;)

This blog post was inspired by a Sunday afternoon chat I had with my Mum about our thoughts and guilt about the possible causes of my ill health since birth. We hadn't really spoken fully about it until then and our conversation surprised me. I have so many what if? questions, I thought I would address some of them now.

I mentioned in a previous blog, a few years ago, that I have had A LOT of health issues since birth.
Probably completely unrelated to my current health, but there are times when I ruminate (I learned that word at counselling ๐Ÿ˜„ ) and have the same negative thoughts going round and round in my head. What if I had done that? What if I had taken that life path instead? Would I still be in the same unhealthy position?

My Mum told me, for the first time, that when she was pregnant with me, her bump was very small for the first 7 months and midwives were worried that I wasn't growing properly. Luckily, she/I had a growth spurt in the last 6 weeks and I was a 'normal' size when I popped out. She worries that maybe something happened in the womb during that time and that caused later ill health - we will never know so there is no point thinking it! I
My Mum and Moi xxx
have an 'outie' belly button, caused by the midwife pulling the umbilical cord and giving me a mini-hernia (Did you know that that is what an 'outie' is? I didn't until I had an operation and the surgeon asked why I hadn't mentioned having a hernia...um...?) My crazy what if? brain wonders if this action, of getting a hernia/outie when I was born, caused some kind of internal problem....again...we'll never know! Like many babies, I had jaundice when I was born but that was the least of my problems! I couldn't tolerate breast milk. I had constant vomiting and diarrhea for months. Midwives told my Mum to give me formula instead. My Mum worries that I missed out on valuable nutrients. I had colic for a long time and was also tested for Coeliac disease. Something was wrong in my digestive system - doctors never worked out what the problem was, it just got better over time. The current train of thought is that M.E is caused by something in the gut. This is why my Mum and I were wondering if my baby health is somehow linked to my current health.


Another what if? What if the growth I have on the sole of my left foot is was caused by a virus and subsequently triggered M.E? I have had the lump since my teenage years, it has been checked by GPs, Chiropodists and Dermatologists. No one knows what it is but they just reassure me that it 'isn't harmful'. It's slightly tender but doesn't cause me any problems so they said to not worry about it. Again - what if?! 

What if there is something in my house that causes my M.E? This is a crazy one, let me explain. I had M.E aged 13-15, we moved into our current house a year before that. I moved to Plymouth in my 20s and was healthy and yet when I moved back into the family home aged 29 and a half I was struck down with M.E within 6 months. See?? Crazy! Conspiracy theory alert!

Would I have M.E if I hadn't pushed myself to study for a degree, relocate and start a postgraduate degree all in a short time frame? Was that too much for my body to handle? What if?! Did I push myself to go back to work/study too soon after my ear infection (the trigger of my second bout of M.E)? Is that why I didn't recover fully, like many other 'normal' people?

There are so many what ifs? An M.E sufferer could drive themselves crazy trying to work out what their cause/trigger was. Until a lovely person in a white lab coat tells us what causes Myalgic Encephalomyelitis, I'm sure my crazy brain will come up with all sorts of weird and wonderful theories!

Love,

Sally
and Foggy (OBVIOUSLY)
xxxx


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 ๐Ÿ‘€.) . 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