Hello!
I hadn't planned on writing loads of blogs during Foggy's home stretch but a few things have happened that should be talked about.
Yesterday, for want of a better word, I was 'head-hunted' due to my social media marketing business to 'host' a Twitter hour slot for the foreseeable future. I had a phone conversation with the founder of this successful business related Twitter hour (38k followers) and felt extremely happy to be asked. She said she weekly has hundreds of requests from social media marketers to do hosting but she only uses people who have demonstrated creativity, talent and experience. It would have given me much needed exposure for my business. Whoop....what a fantastic compliment. I would have snapped her hand off....if I didn't have M.E.
This Twitter hour is at 1pm, JUST when my M.E usually starts to hit, regardless of what activity I have done during the morning. I find that social media is draining when I schedule tweets or send them out spontaneously during the day. One hour of absolutely concentration, creating content, topics, and responding immediately to interaction.....ugh. It's a busy twitter hour, I know because I interact with it myself. It's got a very good reputation for having great content and being good fun.
Part of the reason I turned the opportunity down is guilt. I would feel dreadful if I couldn't keep up with the time commitment due to my M.E or if I struggled cognitively halfway through an hour. Due to the nature of the beast, it is a solo venture. Just me, sitting at my desk, 'talking' to lots and lots of businesses online. I wouldn't have a back-up plan. She explained it as like being a DJ, I would simply be filling in a slot of time.
I am disappointed but know it is well outside of my energy possibilities. Such a shame, I know I would have loved it and been blooming good at it! You can't be witty and fun if you are cognitively comatose. I am just going to take the opportunity offer as a huge compliment of my social media ability, it's great to be recognised professionally.
The second thing happened this morning. I have just watched a segment on Sky Sunrise about how patients with chronic illnesses deal with sick days with employers. Crohns and Colitis UK have done
some research, that's why they were on the breakfast news show. This piece of research highlights that instead of being honest about why we need to take time off sick, patients (in this case Crohns and Colitis but the same can be applied to all chronic illness...M.E included) say they have a common complaint instead of naming the chronic illness as the reason for the time off. So, for example, they might say they have a tummy bug and so need to take one day off when in actual fact it is a flare of their chronic illness. Everybody knows what a tummy upset is like, no need for graphic explanations or in-depth conversations about back to work schedules etc.
This resonated with me personally because, as a mild sufferer who was able to work full time, I used to do this. I used to proclaim that I had never had a day off due to M.E. I lied. I lied for 2 reasons.
1. When I was in employment I didn't want to give my employers an excuse to call me unfit for work.
2. After I left, I was job hunting and I didn't want to put potential employers off.
The sickness level in my department was high across the department so I didn't stand out as the 'sick' person. I wasn't anywhere near the limits of acceptable sickness absence. However, I did take quite a lot of time off with migraines, headaches, feeling nauseous, very low blood pressure, feeling faint -ringing bells with anyone?!
Wouldn't it have been lovely if my employer understood my illness? Wouldn't it have been great to not have to lie about what was wrong?
Love
Sally
and Foggy (OBVIOUSLY)
xxxx
Hello!
Devoted fans, Sally drives herself nuts by wondering if there is anything she did pre-M.E to trigger her illness. Maybe she shouldn't have got so stressed over a breakup or maybe she should have looked after herself better. I'm sure she's not alone in that way of thinking. I keep telling her it's nothing she did to herself but I'll let her explain that mindset in this blog.
Hi,
I'm sure I am not the only M.E sufferer on the planet who goes through phases of either blaming themselves or wondering if getting M.E was preventable.
We were having a tidy-up in our loft last week and I came across the record card that was filled in by the Health Visitor from when I was born up to the age of 5. Interestingly, it says that both my vision and hearing were stronger on the right-hand side. Since having M.E, it has been noticeable that my left eye
muscles are incredibly weak ,and the Labyrinthitis that triggered my M.E affected my left ear and subsequently, any migraines/balance issues start on my left side. I lean to the left which means all of my left-hand pockets are ripped due to catching on door handles! I also had chronic colic, vomiting and digestive problems for the first 18 months of my life (my Mum had a 'bad pregnancy too'). Which makes me wonder if M.E is something we are born with and is not acquired in later life. Because many of these health issues can be included under the umbrella of M.E. However, there are people who have M.E who didn't have health problems in their early years so there doesn't seem to be a pattern there.
It's little things like this that I try to fit into my M.E puzzle. If I hadn't been so stressed in my 20s due to relationship dramas, housing issues, studying for a degree etc, would M.E have started when I turned 30? Should I have taken better care of myself? Done regular yoga sessions, eliminated toxic relationships from my life and generally cared about myself a little bit more? I will never know. Therapists have told me not to stress about it because it's not helpful and will just make my M.E worse. Doesn't stop me from scratching the itch though!
Unfortunately, having M.E brings with it a lot of thinking time. When I am laying on my bed, unable to watch TV or read a book, all I am able to do is think, my thinking pattern literally goes around in circles!
I can't remember my teenage years and so can't think of what could have caused my childhood M.E. I was stressed about my options years that were looming and I have always been a worrier but there was no significant event that my parents can think of that could have been a trigger.
Unfortunately, M.E is a complicated fluctuating life-stealing condition that makes no sense.
No sense at all.
Love
Sally
(and Foggy OBVIOUSLY)
XXXX
ps. There are 11 days to go! The current total is £1606, if you feel this does not adequately reflect the hard work of Team Foggy over the past 11 months... please donate! Donate via mefoggydog.org or by clicking the donate button at the right hand side of this blog. Thank you, all money is going to the ME Association for ME research xx
Hi,
Over the past 4 years, I have been struck by the sheer number of M.E/CFS sufferers who keep their health private. They are free to do so, that is their choice to make. However, as the founder of ME Foggy Dog, I waived that right to privacy in order to raise awareness. As you will know, I talk about everything and anything that comes under the umbrella of M.E/CFS. There aren't many things that I have thought are too intimate to discuss, you guys even know about my M.E affected failing love life and weight problem! Many of Foggy's Followers message me to tell me that I am brave and strong for being so open. I just figure that we need to share the bare nakedness of the illness to make sure that Joe Public 'gets it'. We can't pull any punches. There is no need to dramatise our situation - it's powerful in its vulnerability.
This openness makes me feel vulnerable and leaves me open to negativity, exactly the stuff that the people who choose to be private are scared of. I am well aware that my openness has caused me to miss out on job opportunities, business contracts, and many other things where having a disability could be an issue - not able to work enough hours etc.
In my mind this sense of vulnerability goes hand in hand with the stigma attached to M.E/CFS. Last year, when I started social enterprise training in Winchester, I had to give a 2-minute pitch to apply for funding (which I won but have since given back due to leaving the course). I was looking for something to add a bit of oomph to my pitch. I found it on Instagram. I discovered an M.E
story that was so powerful it touched me immensely. I spoke to the Instagram follower and asked their permission to use it in my pitch. This person hasn't even told their friends and family about their illness, they are so terrified of the stigma attached to ME/CFS. It broke my heart to hear this and was very grateful that I was given permission to tell their story on this occasion. I could see it struck the six people on the panel. They asked why someone would be so scared of people finding out and I explained the ignorance and misconceptions surrounding ME/CFS. The panel agreed that the training organisation I was hoping to set up was needed to knock down some of our barriers and deal with the stigma.
I have met people who have symptoms and have been diagnosed with Post-Viral Fatigue Syndrome (or similar) but won't consider the tag M.E because they are scared of it. It would make them feel too vulnerable and open to negativity. Yes, that's right, just the idea of having the label of M.E is too scary for some people to accept. They tell me they have friends with M.E but are desperate to not have the same condition because they see how cruel it can be. The label itself isn't what makes us vulnerable, it's the stigma and negativity that goes with it.
Prior to setting up Foggy, I didn't really talk about my M.E/CFS in work (apart from with Occ Health or managers) and only mentioned it to close friends. I felt too vulnerable and open to criticism if I opened up to a wider circle. I would always be braced for nasty comments or opinions. That feeling of vulnerability isn't pleasant. Now, I know that this nastiness comes from a lack of awareness and wide range of misconceptions. Those people who chat online about awareness being 'pointless' need to see how the general public being 'aware' can only help to reduce our feelings of vulnerability, and help to combat the stigma surrounding M.E/CFS. We should not feel embarrassed or ashamed about having an invisible disability.
I have been told that there is strength in vulnerability and I am slowly coming around to the idea. We show strength in the face of adversity.
Love,
Sally
(and Foggy OBVIOUSLY)
xx
Hello!
Sally is going to tell you all about how different people say different things to her in terms of progress. I'll let her explain.
Hi,
Those eager-eyed amongst you will know that I have been busy with lots of business meetings and networking with various academic people in the past couple of weeks. I am often surprised when people seem to know a little bit about M.E and are genuinely interested. What has struck me recently though is that many people seem to think that awareness has been raised to the point where the general public are now aware, and our illness has been recognised both as a disability and as a valid illness. They seem surprised that ME Foggy Dog and other advocacy work is still needed.
I have to remind myself that pre-Foggy, I'd had M.E/CFS for 7 years without knowing much about my own illness apart from that M.E included being very tired (sooo much more than tiredness though). I wouldn't be surprised if the general public still think M.E/CFS is mainly tiredness. Not the
list of over 30 symptoms that I now know it to be - I had the symptoms, I just didn't know they all came under the same umbrella of M.E/CFS. My point is - if I, as a sufferer, didn't understand my own illness, how on earth can the general public fully understand something that is so fluid and irregular? I stick to the basics with my awareness-raising because a basic level of understanding across the board is better than a lack of understanding of the intricacies of our complicated illness.
I have been too tired to have THE conversation. You know the one I mean. The conversation where I explain that M.E is still having to be debated in Parliament (Great news about the debate on 21st June. Treatment and research funding are still huge issues that charities and advocates are working hard to highlight and make progress. The conversation where I tell them that many in the healthcare profession still don't believe that M.E/CFS is a real illness and that many in the education sector are unable to support children adequately due to a lack of awareness and appropriate infrastructure. I know this because I have spoken at length with teacher friends of mine who say they care about their students but don't have the knowledge or system to support adequately. They have attendance targets to meet and long-term sickness absence affects their ability to reach those targets. They are used to illnesses where mind over matter works.
I was talking to an education academic recently and he said that teachers implemented individual care plans for any child that was suffering with any illness, M.E/CFS included. What I didn't have the energy to tell him was that ME/CFS is unique and what may work for a child with cancer, for example, may not work for an M.E/CFS affected child. There is no point extending deadlines for a couple of weeks as the child may well be unable to do schoolwork for months on end. Knowledge and understanding of the illness would be hugely beneficial to all concerned: Child, parent, teacher. I would also be concerned as to where they are directed to for information about ME/CFS. Do they go to a school-linked GP? Would this GP be in the GET camp? In which case, any information received by the school wouldn't be fit for purpose. Best case scenario - A child and their parents would be in contact with a teacher who knows about ME/CFS and would have appropriate support from day one. I may still venture towards creating a training organisation to address this issue....that's one of the many big decisions I have to make post-July 4th.
I see so many threads on Twitter where people are discussing whether we have made progress in terms of raising awareness. Many say we haven't, but there are a few sufferers who are noticing a little bit more understanding in their 'real-lives' offline. Personally, I know I have educated many people in my own circle about M.E/CFS and I have been contacted by hundreds of 'friends I haven't met yet' who have relatives/friends/colleagues with the illness, thanking me for helping them to understand the illness. In terms of what ME Foggy Dog has achieved, progress has been made.
Slow and steady wins the race, right?
Love,
Sally
(and Foggy OBVIOUSLY)
xxx
Hello,
Foggy is on his way to China so I'm making the most of the peace and quiet. I'm writing this blog about driving because a few things have happened in the past couple of months that are worth mentioning.
I have always been proud of the fact that I am a good driver. I have had a couple of bumps since I passed my test over 20 years ago but none were my fault :) (One instance - My car was hit in a car park, it was parked and I wasn't even in it...definitely not my fault! lol) . I am particularly proud of my reverse parking skills. Portsmouth is a very packed in city with rows of narrow terraced streets, most households have two cars. This means we are the third most traffic congested city in Britain and have limited parking. So, you kind of HAVE to be able to reverse park into the tiniest spaces!
Let me stress -I DO NOT DRIVE WHEN I AM HAVING A BAD M.E DAY. Payback often feels like a bad hangover, would I drive with a bad hangover? NO. I am aware of my limitations when I am going through a flare and so will not even think about driving. It wouldn't be safe. I only drive when I feel I am 'well enough' to do so.
I haven't driven long distances for years because it is too tiring so I am already limited to a 20-mile radius. Driving allows me to be independent enough to go to business networking, grocery shopping, seeing friends locally. I find walking to and standing at bus stops exhausting and can't afford taxis, so to me driving is the best option. It is the last remaining piece of independence available to me.
However, in recent months I have noticed that I have struggled cognitively on the few rare occasions that I have driven after 6pm. For example, I went to a networking event and felt fine but I struggled when I was about 30 secs from home on the return trip. I couldn't park. I attempted to reverse park
15+ times. My brain simply couldn't work out which way to turn the wheel. There wasn't enough room to drive in head first. Fortunately, there was no traffic waiting for me to get out of the way. I had to run inside my house and grab my Dad to park my car.
Last night, I drove for 20 minutes to go and see a friend ( I haven't been to her house before). I had my sat nav talking to me and the radio was on but down low. I felt fine and knew it was only a short distance so wouldn't be too tiring. However...... I accidentally got in the wrong lane (4 lanes merged and I was in the wrong one) and ended up on a 10 minute detour along a different motorway. Only to then miss the correct junction and take another 10 minute detour. I was starting to think I should abandon all hope of reaching my destination! I was concentrating so much on driving safely that the multi-tasking effort of knowing where I was going was too much. I'm fine if I know the route but if I am being guided by a sat nav for some reason my brain can't cope. I got there 20 minutes late but safe and sound and the drive home was problem-free.
I think it is important to note that M.E/CFS is not on the watch-list of the DVLA (Official body for driving stuff in the UK) . Since my diagnosis in 2007, I have queried many times whether I am able to drive with my condition and have always been told I am able to but to use common sense. I have lost count of the amount of times I have only been able to accept invitations after asking my Dad if he is happy to drive me/pick me up/pay for a taxi. It's annoying, I have a super-duper speedy sporty car sitting outside and I am not able to drive it as much as I would like.
I don't want the DVLA to add ME/CFS to its watch list but I feel it's another example of authorities not understanding the illness or being aware of its implications. Just an idea - maybe they could issue us with a cognitive test to do before getting behind the wheel. That said, fluctuations can often be hourly so although we may be fine on the outward journey there is no telling if we will be fit and able on the return journey. I have had to leave business events early before because I can feel myself running down slowly and I often have to say 'if I don't leave now I wont be safe to drive'. Because you can't see M.E, I'm sure business acquaintances see this simply as a way to leave early!
Remember, I have mild M.E. Moderate or severe sufferers will have had to give up driving. It is a physical activity and so takes energy but is a cognitive activity too. Driving is difficult, that's why many 'normal' people struggle to pass the test in the first place. Anyone with limited energy/cognitive power is not able to cope with having so much going on at the same time!
Love,
Sally
and Foggy OBVIOUSLY
xxxxx
