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Monday, 28 August 2017

Technology and Self-Employment

Hi,

Foggy is cruising around Ireland on-board the P& O ship Oriana as I type this. He is in Dublin today, Linda will have her work cut out trying to stop him from indulging in pints of the black stuff! Linda has promised lots of photos of his exploits but, understandably, may have wifi issues on the ship. So, photos will be uploaded after their trip. Looking forward to seeing what he got up to!

I wrote this blog back in 2015 - http://mefoggydog.blogspot.co.uk/2015/07/buttons.html, in it I explain how technology, phones and social media, is draining. My life has changed significantly since then so I am going to explain how technology affects my life now.

I have my own business...wooo get me! (see wordsangel.co.uk)  I offer social media marketing and proofreading to businesses (and students).  Initially, on the surface, self-employment seems a good choice for someone with a chronic illness who struggles to work full time for employers. I work from home, set my own hours and can take as many rest breaks as I need. However, it also means I can't share my workload on my bad M.E days. The work still needs to be done. I am now the whole package: IT dept, finance, HR, social media, marketing etc etc. I LOVE it. But, there is a lot of screen work involved in my day to day life and it does catch up with me.

As I said in my 2015 blog, social media is incredibly draining. I do it because I love it, but it takes a phenomenal amount of energy. So, I post at least 5 times a day for each client. I have to research what to post, think about how to
convey the message, search for website URLs to post, design content, schedule posts etc. All of which require brain cells to be alive and kicking! I am finding that by 2pm every day, I have to take a very long 'power nap'. I restart work in the evening after I have rested. 

It is tricky to explain what brain drain feels like but I'll give it a go. So, imagine you have an acorn sized 'hub' in the centre of your brain. When it is working correctly you can't feel it. But, as time goes on, with lots of looking at blue-lit screens, it feels like the acorn is throbbing and causing waves within your brain. The acorn becomes painful and starts to cause puffy/painful glands, a sore throat, slurred speech, headache and neck pain. It becomes exceptionally difficult to process thoughts and body functions get slower and slower. It is 100% impossible to push through. My body is telling me to stop. I can't ignore it as I am grinding to a halt whether I want to or not.

I dream of having a phone with buttons again, but know that is impossible now. I am on call 24/7 online. I now have 10 different social media accounts linked to my phone. I have set my phone settings to have a minimum amount of alerts, otherwise I think I would go slightly potty! But, I still have alerts through every 5 minutes or so. In theory, this is great because it means I am good at my job! But, when I have been hit by a tsunami of M.E-ness...it's not so good. I have become very good at turning my phone off at 9pm though. Thus giving myself an hour to wind down as much as possible before bed at 10pm. I also try not to do client work post-6pm. Because that work pays my bills it is done first thing in the morning when I have the most energy. My own business and Foggy gets done later in the day. Energy levels dictate my daily routine and work schedule. If I have a networking event to go to, usually 6pm-8.30pm, I have to restrict activities for a couple of days before and meticulously plan my workload so that I have the energy to schmooze with other business people effectively. As we all know, I know, to the hour, that my M.E payback will hit 2 days after the networking event so plan my workload accordingly.

There are perks to being self-employed but be warned the workload can be overwhelming. Being able to rest regularly and not having to fit in with someone else's timetable is worth its weight in gold though.

Love,

Sally (and Foggy OBVIOUSLY)

Saturday, 26 August 2017

Question

Hi,

So, I asked Foggy's Followers to send questions for me to answer in a blog. They could be about M.E/CFS, Foggy's campaign, or about me personally. I'm an open book so happy to answer whatever is thrown at me. I received a question from Megan.Rose06 on Instagram. She asked:

When were you diagnosed with M.E and how long did it take to be diagnosed?

This is a tricky one to answer as I have actually had M.E twice. I had M.E symptoms initially when I was in secondary school. I was aged 13 (ish) and it
was during my 'options' years. I missed 18 months of school, had dozens and dozens of tests but never received a diagnosis. Then one day, it had gone...I was better.

The second round of M.E started 2 weeks after my 30th birthday. It started shortly after an ear infection (Labyrinthitis). It took 3-4 years to get a diagnosis. I wasn't taken seriously and my diagnosis came about in a conversation with a locum GP that went something like this...' You have M.E, but don't worry about it'. So far, I have had this bout of M.E for 10 years and the only treatment/management support I have ever received is CBT. I go through periods of 'remission', where I have a few months with more energy and can push myself to achieve more on a daily basis. But, I haven't had a period of remission for at least 3 years now.

I hope that answers the question. Any more? Contact me via mefoggydog.org anytime.

Love,

Sally xx

Wednesday, 23 August 2017

Inconsistency

Hello,

Sometimes, reading other people's accounts of their M.E experience is like reading a foreign language. In the 10 years since my diagnosis, I have only ever received a CBT referral. Despite having a wide range of symptoms, for which there are specialists, I have never been referred. So
when other M.E sufferers talk about appointments with neurologists, endocrinologists, gastro-people, physiotherapists, etc etc.... I find myself wondering why their experience is so different to mine. My orthostatic intolerance has never been addressed by GPs, nor my light sensitivity, IBS or hearing issues. It's all just lumped together under the label of untreatable M.E.

Sometimes, these other sufferers live in other countries and so that explains why their healthcare differs. However, I am increasingly finding that UK sufferers are treated differently depending on their postcode or whether they are treated by the NHS or privately. Some take part in medical trials or drug trials, others don't get the opportunity. I can fully understand why this breeds resentment within the M.E community.

It's all a bit of a mess really isn't it? Not only is there no treatment for M.E but there isn't even consistency when trying to deal with individual symptoms of the condition.

There are three things that we are now striving for....treatment, awareness, and consistency!

Love,

Sally (and Foggy OBVIOUSLY)

Friday, 18 August 2017

'Of course that happens...it's your M.E'

Hi,

How many of us have visited chiropractors, dentists, physios etc and been fobbed off with 'Of course that happens, it's your M.E'? It's happened to me hundreds of times!

I'm writing this blog because it seems bizarre to me that we are always being told that the healthcare profession either doesn't believe it's a real illness OR that they don't understand it. And yet, it's the first thing that springs to their minds when offering a possible diagnosis for a random ailment.

For example, every couple of months I have painful lesions (2 cms long - like little worms) on the roof of my mouth. They baffled
my usual dentists so I was referred to a gum specialist. He had a look and said it was because of my M.E. HOWEVER, a few weeks ago, I saw a Facebook article that had been commented on by Dr Charles Shepherd (ME Association) and he said M.E is not the cause for any mouth related stuff. News to me! So now I am wondering what else is up?! What if there is an other ailment that needs treatment but has been neglected because it has been brushed off as 'just an M.E thing?' I am using common sense though and I think they are probably a bit like a cold sore but inside my mouth, they flare up when I am run down so it kinda makes sense.

I just wish they would hold their hands up and admit that they don't have a clue what our random symptom is, but do as much as they can to find out what it is! Making stuff up doesn't help!

Love

Sally (and Foggy obviously) xxx

Thursday, 17 August 2017

Dentist - Death by Lighting!

Hi,

Foggy is currently in Disneyland and is still looking for Goofy, his doggy idol. he is away for another week or so. In his absence, I thought I'd write this blog post.

This post is about a visit to my dentist yesterday, I felt fine when I arrived at the dental surgery but half an hour of sitting in a waiting room that was so bright it was as if it had come from the film Close Encounters of the Third Kind, I felt as if my spine was soft spaghetti and I could barely hold my head up. As the minutes ticked by I could feel my energy oozing out of my pores. My head felt so heavy I had to slump over, elbows on knees with my hands holding my head up.

After 30 minutes of light torture, my saviour, in the form of a dental nurse, came to rescue me. I explained why I was talking and walking slow and she was sympathetic as I joked I would lay in the seat, close my eyes and snooze while they worked. I was slurring my speech now and was struggling to explain the reason for my visit (mouth guard issue) to the dentist.
*Foggy* He has dark glasses on....grrrrrr

BOOM..... the overhead light was turned on, 2 ft from my face and straight into my eyes. I
understand why they need light to see into the deep crevices of mouths but.....why have they not twigged that some patients might need dark glasses to counteract the harsh lighting? I needed to keep my eyes open to communicate effectively with the dentist and so my eyes were being assaulted! My glands were enlarging at a rate of knots and I felt as if my weary body was now melting into the dentist chair. My body was trying to regulate itself and was fighting against my light sensitivity.

By the time I walked through Reception and exited the building, I felt like vapour. All this by 9.50am thanks to the over-use of harsh fluorescent lighting. The reception area has a glass wall, high ceiling and is light and airy. There is no need for 20 or so bright lights! Natural light with a bit of additional lighting should be plenty.

I am happy to help dental practices in an advisory capacity to make sure they are doing all they can to make dental treatment easily accessible and a non-challenging experience for all!

Love,

Sally (and Foggy obviously) xxxx

Apologies if this blog is a bit waffley - brain fog today xxx

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).