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!

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).

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

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 😄 ) 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

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

Noise Sensitivity

Hello!
Sally is having another one of her 'I've been awake since 2.30am so will get up and do Foggy admin' mornings. I'm on a cruise ship heading for Iceland but have just spoken to Sally via face time (;). Here is a blog about how my best friend Patch is not helping one of her M.E symptoms at the moment.

Hi,
So, I know 100% that Patch loves me from his paw pads to the tips of his beautiful ears. But, he now has doggy dementia and is barking A LOT and it is causing my symptom of noise sensitivity to flare. I completely understand that he can't help it. Because he is 75% blind, 80% deaf and has mobility issues he gets anxious easily. Hence the barking. Patch has always had one of those really deep 'manly', loud barks, I think in his head he is a butch Alsation or Doberman and not the Jack Russell that he is! Now that he can't hear himself 'talking' he is even louder!

Patch xx

My family and I could be chilling out watching TV, not doing anything special and he starts barking...for no reason. He can't hear us telling him to be quiet and can't see us using body language to calm him so my senses are in tatters after about 30 seconds!

When noise sensitivity kicks in I can literally feel my energy slipping away. Almost as if my energy levels were a bath full of water and someone has just pulled the plug. My brain is working so hard to overcome the sensitivity to noise that it uses all of my energy. Just lately, I might have a half-full energy 'battery' at the start of the day but by 10am, thanks to Patch's barking, I have flatlined. I'm also

finding that my neck glands, which are always slightly tender, flare instantly and get very painful. Again, because my body is trying to counteract against the noise sensitivity. My entire body, because of the depletion of energy, goes a little bit floppy and slow. My speech starts to slur and it's all bit of a mess really.

I work from home and often sit at my desk wearing noise cancellation headphones. I can still hear him. I also work listening to the radio, the combination of Katy Perry and dog barking is enough to send me into meltdown!

We have bought him some calming herbal medication so hopefully he will feel less anxious soon. I know my ears, energy levels and sanity will be grateful!

Love Sally
and Foggy (Obviously)

Lynne's M.E story

*Foggy* Hello! I have asked my fabulous Followers if they could write a guest blog post for me about their own personal M.E story. This is the first of this campaign. Please read this blog post from Lynne, North Shields, Tyne and Wear, UK.

Being diagnosed with an invisible illness has to be one of the weirdest things that has happened to me and I've experienced some weird stuff!

 

You have all of these symptoms and you feel the pain but all of the tests come back saying you're fine! The doctors send you home and you move no further forward. After 5 months of going to the GP in tears on a weekly basis, I was eventually referred to the Tropical and Infectious Disease ward at the local

Lynne -
 Doesn't look sick does she?!

hospital. Sat there silently playing a game of "what does this person have?" in my head...I mean who wouldn't be wondering.... It's the Tropical and Infectious Disease ward! Then I realised someone will be doing the same to me. You get sent there when the GP has no idea what's wrong with you. They take about 8 vials of blood and test you for HIV, Hepatitis etc... I mean, I suppose it's good to know I don't have any of those things. My poor arm was black and blue from the prodding about trying to find a vein. 

Everyone around you becomes a doctor. Telling you to "think positive and ignore the pain" (REALLY!!!) and their sympathy runs out pretty quick! So, I try to avoid being off sick. Sometimes it's unavoidable. Like when you try to stand up out of bed and drop faster than a brick from a roof, but other times my good friend Tramadol helps me through the day! It's great stuff for taking the edge off the pain and it took a lot of begging my GP to prescribe it so this stuff is like gold dust!  Tramadol sometimes makes being at work entertaining! I am able to function, although when I first started taking it my memory was shocking. I asked one of my colleagues what time she came into work as I hadn't seen her all day, only to be met with a puzzled face and her telling me I had spoken to her an hour earlier! Oops! 

Brain fog....nothing seems to work for this little gem. I recently bought a new car...It's pink so you'd think I would remember this, but no, I was stood in the car park confused and panicking that someone had stole my car....Nope, I had forgotten that I had a new car! I swear people turn my memory issues against me when they forget to tell me  something. I'm looking in your direction Mum! My tolerance to alcohol is non existent now. I was blaming getting older but its a symptom and no lie, I was relieved to find out this wasn't because I just turned 30! 

It's not all bad though...Even if I am in bed by 9pm every night. I really do believe that if everyone who is struggling with invisible illnesses keep talking, sharing and making people see it's not our imagination, Maybe something can be done to help us. My illness was brought on by Tonsillitis a year ago.If anyone around me has any sort of Strep infection I literally run away from them. I hope that this can be cured or at least begin getting some sympathy for those of us who are suffering. I doubt anyone truly gets how hard it is to smile daily and power though the pain. No one wants to be sick. I don't want daily pats on the head or anything, but a little bit of understanding will go a long way. 

If anyone reading this is newly diagnosed like myself...Keep going! It takes a while to learn your limits, I often ignore my body and regret it for about 3 days after! We are stronger than we think.

Lynne xx