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

It has not exactly been 'restful'!

Hello!

Foggy is enjoying his well-earned break in Foggy HQ and while he is snoring I thought I'd write this blog to tell you how I have been health-wise to since the last campaign ended.

My 'vertigo' lasted 3 and a half months before it was finally diagnosed as chronic migraines. Which is EXACTLY what happened at the start of my M.E experience. So, after a few weeks of beta-blockers, my symptoms eased and I was able to get back to living my life. However, my body had different plans!

One week after my dizziness stopped, I travelled to Surrey for a much needed catch up/girl's

weekend. I had paced myself to make sure I was fit and well (ha!) for the drive and arrived there excited for the weekend ahead. We had a glass of wine while we were getting ready to go out on the town, ordered a taxi and headed down the stairs. Da da dahhhhhhh, I fell down the last 3 steps and landed on all fours on HARD laminated flooring. My friend, who is a nurse, was concerned and asked if I was ok, I assured her that I was. Purely because it had been so long since my last night out (probably about 9 months), I was determined to go out come hell or high water. At that point, my legs/feet had gone numb and I wasn't in pain. I was wearing heels..... we ventured out to local pubs. My mentality was to grit my teeth, hobble and get on with having a good time. Unfortunately for me, a couple of pubs had wooden floors and my, now very unstable ankles, didn't want to keep me upright. I slipped at least 3 times. As the drinks flowed more and more I started to find my clumsiness funny....I didn't laugh for long!

We ended up dancing in a club at about 11pm. I kept attempting to dance and lost count of the number of times I slipped. Thank goodness for low-level sofas breaking my fall as I toppled backwards! Luckily (?), the alcohol was acting as a kind of anaesthetic and the pain, at that point, wasn't overwhelming. However, one last stop at the bar to buy drinks put an end to the evening's frivolity. Someone had spilled drink on the floor and I slipped AGAIN, this time my, already weakened, ankle was wrenched sideways. My friend realised that I had reached my limit and bundled me outside.

Some of her medical friends saw us sitting outside the club (think '24 hours at A&E' and you can

imagine what we looked like!) and checked my foot over. A consultant friend said he would drive us to A&E to be checked over. So off we went.... 6 hours later.....
I was told I had a badly sprained ankle that would take 6 weeks to heal. However, subsequent consultants have said I chipped 3 pieces of bone off the top of my foot. I am 100% sure that I have internal broken bones but as the treatment would be the same it makes no odds now.

Anyway, I wanted to use this blog to show how M.E affects the healing process. I had my accident at the end of July and am still healing. I saw a physio consultant a month ago and I mentioned that I do M.E advocacy and asked her if me having M.E is the reason healing was taking so long. She said probably, but that there was no specific research to draw on. She said that using common sense and knowing a bit about the condition would lead her to say that it was the reason it was taking so long. Purely because M.E slows everything down and so something that would usually heal in 6 weeks could take up to 3 times longer in an M.E patient. I am currently doing hydrotherapy to try and build my muscle strength and balance but, as I didn't have good balance before the accident, I am not sure how they will gauge my progress!

While all this has been going on I have also been experiencing double vision. Now, this could 'just' be a symptom of M.E. but I went to the opticians to get it checked. they sent me for an emergency eye appointment. After a Saturday afternoon full of eye tests, the consultant said he believed my beta-blockers, which I was taking for my Migraines, were weakening the muscles in my eyes, making focusing my eyes more difficult and slower. He believed that drug sensitivity (a M.E symptom) was the cause.  He said 'what would you rather have? Migraines or very temporary double vision?'. Oooh, I get to choose?! I have decided to come off the beta-blockers as I don't like flooding my body with drugs. So, now it's a case of wait and see. I'll have to decide what action to take if the dizziness/migraines return...if they ever do.

I had planned on taking time out from Foggy to de-stress and sort my own life out but my efforts have been massively limited due to being on crutches for 10 weeks (VERY TIRING!). I still can't drive or walk far. As I type this I have an ice-pack on my foot as walking today has made my foot swell up again.

M.E affects all systems and aspects of bodies and our bodies don't stick to the medical profession's timetable. I think it's also evident that medication for M.E symptoms can lead to other problems that can also be confused with M.E symptoms.

The biggest drawback? I had to wear flat shoes to my 40th birthday party! #badtiming!

Happy birthday to me :)

Love,

Sally xxx

Pain Caused by M.E./C.F.S. and Other Conditions

Hi,

Throughout Foggy's life I have made a point of saying I am lucky enough to not suffer from M.E./C.F.S chronic pain. However, things have started to change over the past 3 months. I am currently undergoing tests and physio to try to deal with an extremely painful right arm. RSI, Carpal Tunnel and Tendonitis have been ruled out and the physio believes it to be a nerve issue. I know this doesn't 100% mean that it is yet another M.E.C.F.S. symptom to deal with but the odds are quite high! Obviously, having Hypermobility Syndrome confuses things even further when added to the mix!

I am writing this blog today because my initial physio assessment yesterday 

was quite amusing. He ran through a list of questions to rule out possibilities. However, I answered every question with 'I have that every day with my M.E so I don't know if this problem is adding to that!'. So then we moved on to 'No, my arm issue does not make that symptom any worse than usual'. A few of

the questions were as follows:

- Do you experience dizziness?
- Do you experience balance issues?
- Do you experience nausea?
- Do you experience blurred vision?....

It was a long list so I won't go through all of it, I'm sure you get the idea!

It struck me that I could have an underlying illness, not connected to M.E. but we (combination of doctors and myself) wouldn't be able to tell as M.E overlaps EVERYTHING! So much health stuff can be found under the umbrella of M.E it is difficult to estimate where M.E stops and something else takes over.

At the moment, my right arm hurts from my hand up to my armpit. Most of the pain is in the crook of my elbow though and so any time I bend my arm - typing on my mobile phone is EXCRUCIATING -  I am in pain. I have decided that once Foggy finishes on Friday I am going to remove social media from my phone. The combination of less mobile use and less laptop work for Foggy will hopefully help the problem. It won't fix it though.

It is slightly worrying that my M.E.C.F.S. is changing/getting worse but I am altering my lifestyle to adapt to the changes. My GP has said the best approach is physio and painkillers. I am not keen to start on more medication but sometimes the pain takes my breath away so it's a case of needs must. I am hopeful that a year-long break from Foggy will allow my body the chance to settle down and rest properly. My current situation is not helping my severity level either. Being unemployed and actively looking for work is stressful....stress and M.E.C.F.S. do not work well together!

Love,

Sally xx

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