I thought I had got out of the habit of ‘grabbing rest’ but it seems to have made a return due to the hot weather.

I have fond (NOT) memories of needing to ‘grab rest’ when I worked full time, making the most of every spare second in which I could lay flat and close my eyes. When I was still in employment my morning routine would be make/eat breakfast, get dressed, sit on my bed to put make up on, lay flat for 2 minutes before heaving my body off my bed, and dragging myself to my car to make my way into work. That sense of dread that the 2 minute ‘energy grab’ wouldn’t last long and wondering when I would next be able to ‘rest’. By ‘rest’ I mean, sit/lay down somewhere quiet for more than 2 minutes.

Self-employment means I have far more control over my energy usage and, of course, the commute to work now involves walking through my house, across the decking, past the fishpond (saying ‘hello fish’ on the way past), and across the lawn to Foggy HQ rather than a 10 minute drive in heavy traffic and a 2 minute walk from the carpark to the place I worked.

I enforce rest breaks now, I ‘designed’ the office interior to made sure that I had enough space for a ‘gamer beanbag’, which has a kind of headrest built in. Fortunately for me, my Hypermobility

Syndrome means I don’t have difficulty getting down low to sit on it! It has been very amusing to see my parents attempt to sit on it with accompanying groaning and contortioning! Every hour or so, or when I get that slightly confused feeling that is the alert that energy is starting to wane, I move 4 ft to my right, flop onto my beanbag and listen to a mindfulness exercise on YouTube. 5 minutes of enforced ‘switching off’ and the confusion recedes again.

However, this current spell of hotter-than-usual weather has thrown by body off kilter. I had got into the routine of starting work at 9, rest breaks, lunch at 12, sleep, bit more work mid-afternoon then ‘clock off’. However, it is now too hot to work inside Foggy HQ after 11am every day, I’m not a fan of working in the evening (my M.E isn’t very keen either!) so I’m now trying to get into the habit of starting work at stupid o’clock when it is cool so I have done most of my work before 11 am. This change of routine is making my M.E go haywire…add in a high pollen count and I am more perma-knackered than usual at the moment.

This week, my morning routine has been cuppa at 6.30am (I wake up between 5.23-6.35am every morning – don’t want the neighbours to think there are intruders in the garden so I wait until at least 6.30am!), head to the office in PJs, turn laptop on – rest break while laptop warms up (so slow!), an hour of work, head into the house to have breakfast and get dressed  – grab 5 minutes of rest on my bed, head back to the office, another hour of work, beanbag/mindfulness rest break, more work then at 11am head ‘home’, and grab 5 minutes of rest laying flat on my bed with the curtains drawn. I do a bit more work later in the day on my laptop in front of the tv but the heat is making ‘usual’ working impossible.

The high pollen count is making me feel incredibly sleepy and so when I am ‘at home’ not working I spend most of my time propping my eyelids open! I find myself ‘grabbing rest’ at every opportunity as the pollen/heat combination is wiping me out. My parents are getting used to me disappearing for hours on end at usual times (for me) when I literally cannot keep my eyes open (pollen – not M.E) but naturally, the change in routine is also having a knock-on effect on my M.E.

Do you ‘grab rest’? Is it a sign to you, as it is to me, that your routine is off kilter? Perhaps it’s a sign that my energy management prowess has dipped over the past few weeks. After 16 years of practice, it’s a reminder that M.E is never static as it always has to adapt to its environment and new routine.

Love

Sally

and Foggy OBVIOUSLY xxxx

ps. Foggy’s globetrotting adventuring is returning in July 2023, get in touch if you can help him with his adventuring in mid-July – August.

The post M.E and Grabbing Rest first appeared on ME Foggy Dog.

Since having COVID19 in March 2020, I have had a  croaky voice that seems to flare on exertion. It’s now my main indicator that post-exertional malaise is on the horizon. My voice starts to ‘go’ about 20 minutes before I start feeling like I am moving in slow motion and my rainbow of symptoms start flaring.

It’s been a long road to getting a referral to a Speech and Language Therapy department at my local hospital. Firstly, Speech and Language won’t accept referrals until an appointment has been had with the Ear, Nose, and Throat Department (ENT) to rule out nodules, etc. ENT won’t accept referrals unless a patient has been on acid reflux medication for 6 weeks to rule out acid reflux as the causal factor. Add to that lengthy waiting lists and this ‘pathway’ has been on going for a year or so.

**Edit**

I should say that during my previous 15 years of having M.E, I’d had different voice issues. I had periods of huskiness and occasionally lost my voice altogether. When this problem started in 2020, I had no idea that some fellow pwME had the exact same problem ie. croaking, because the vast majority of pwME do not post videos of themselves like I do!! I hadn’t heard how other pwME ‘croak’. As this is a new problem for me, I am listening to what the Speech and Language Therapist is telling me though I fully recognise that there could be a ‘M.E-related cause’ that ‘healthy people’ do not experience. It could also be caused by Mast Cell Activation Syndrome (‘Hoarseness can be a ‘symptom’), since having COVID19 I have many ‘traits’ of MCAS so it is a possibility. I am going to participate in this therapy with an open mind and hope that I can improve even a little bit.

I had my first appointment with ENT in January 2022. During this appointment, an abrupt ENT Consultant with limited bedside manner, put (read: forced, pushed) a camera up my nose and down to the top of my throat to see my vocal cords. The camera was in place for 5 seconds before he whipped it out and said ‘there is nothing physically wrong with your vocal cords, I’ll refer you to Speech and Language for some therapy’. After waiting 6 months for the appointment, I was both relieved that my vocal cords were ‘ok’ and annoyed at the speediness of ‘care’. I had my second ENT appointment (for ongoing Eustachian Tube pain and inflammation) 2 weeks ago and this Consultant was awesome. He explained how to breathe through the ‘camera up the nose process’ (I’ve forgotten the name – sorry!) and explained in non-medical jargon what is going on inside my head (grateful!). So if you have had a ‘camera up the nose’ procedure like my first one, I can reassure you that there are ‘less bad’ ways of doing it! Not related to my speech issue, but this second Consultant confirmed that my Eustachian Tube is still inflamed, the surrounding lymph nodes are enlarged/inflamed and suggested treatments (Nasal douches SUCK). None of which was offered in January when the problem was first spotted. I was just told ‘your Eustachian Tube is inflamed’ and it would go away in time.

Back to the speech issue, I had my first Speech and Language Therapy appointment 2 weeks ago. Sam, my therapist, was fabulous. This session was mainly educational and Sam talked me through the ENT/Speech and Language pathway, showed me how the throat and vocal cords work using diagrams, and explained how she MIGHT be able to help. Sam said she couldn’t promise to make my voice ‘better’ and I reassured her that any improvement would be welcome but I wasn’t getting my hopes up!

Sally’s Top Tip

Because I am aware that my voice issues coincide with PEM, and that I always rest before hospital appointments to make sure I am not going through PEM so I can communicate effectively, I KNEW my voice issues would not be present during the Speech and Language Therapy appointment. So, in the week before my appointment, I recorded myself croaking so the therapist could hear what my ‘croakiness’ sounds like.

This is the video I played her AFTER we had recorded me reading a story out loud in my ‘normal voice’ (that was only slightly croaky). She agreed that it was beneficial to hear the problem for herself as she never would have heard it during our sessions.

WATCH – https://youtube.com/shorts/bPSKa2kqhe0

I would recommend recording your voice to any pwME who is referred to Speech and Language Therapy, it saves energy if they can hear the problem rather than you try to explain what it sounds like!

Muscle Tension Dysphonia

Muscle tension dysphonia is a change in the sound or feel of your voice due to excessive muscle tension in and around the voice box. Same believes that I hold a heck of a lot of tension in my throat area. Given that we are in a pandemic living with unusual life stressors on top of the usual day to day tension, I would not be surprised!

I made it clear that my croakiness fluctuates and Sam said that muscle tension Dysphonia is variable and unpredictable and so, although in me it is an indicator of PEM, it fluctuates in non-M.E affected people too.

Read all about Muscle Tension Dysphonia here.

Glottal Fry (Croaky)

I have Glottal Fry! Apparently I have something in common with the Kardashians….though they have it through choice! (Why anyone would deliberately make themselves sound like a frog I HAVE NO IDEA!!)

This extract is from  McKinney, James (1994). The Diagnosis and Correction of Vocal Faults

‘Glottal fry also known as vocal fry is caused by air escaping through the vocal folds which causes small irregular vibration.  This vibration causes the voice to sound slow, low-pitch, “raspy”, and / or “hoarse”.  Many people produce glottal fry toward the end of the day due to overuse of their voice.  Glottal fry may also happen at the end of a long phrase when it feels like most of the air has been depleted.’

I tried to find an article to share but it was all about the Kardashians and choosing to speak like this so I didn’t feel those articles were a good fit!! Please feel free to do your own online searches if you want to know more.

My therapist, Sam, said that Glottal Fry in me =

• Low air flow
• Tension

Causal factors of Glottal Fry can also be:

• Dehydration
• Excessive talking
• Breathing pattern issues

I explained that I have been tested for Diabetes (negative) due to my excessive thirst and have been drinking 4 litres+ every day since March 2020 and my voice ‘goes’ even when I have barely spoken all day, and so it’s not linked to excessive talking. Sam checked my breathing (as did the Long Covid clinic Physio a year ago), I breathe ‘normally’ so it isn’t a breathing issue either.

Sam explained that the voice is a barometer of overall health: physical, emotional, and spiritual. Think of when ‘healthy’ people have had a really long exhausting day, you can tell that they are exhausted by the way they speak softly and sound unusual in terms of volume and pitch – ‘You sound exhausted’.

I have been booked in for 4 further sessions of Speech and Language Therapy, Sam has reassured me that when she says ‘voice exercises’ she means tasks, I won’t be asked to do anything strenuous but we will monitor how much energy these tasks require and adjust accordingly.

I do not like sounding like a frog so am hoping that therapy will help to improve my voice but, as it is linked to my PEM, my optimism is limited. You’ll all be able to hear how I am doing during my Facebook/Instagram Live videos and podcasts – I have been reluctant to record anything ‘professional’ for a while because my voice ‘goes’ fairly quickly. Hopefully, I (and you) will hear some improvement soon!!

Check out the British Voice Association website for more info.

Love

Sally

and Foggy (OBVIOUSLY)

REMINDER

‘Foggy’s A to Z Adventures Around The UK continues! Foggy’ campaign has been paws-ed for a week or so while we wait for a Foggy-sitter to host him on adventures in somewhere beginning with the letter ‘O’ (Town, city, landmark, or event in the UK). Get in touch if you can help! Thank you Contact Sally via mefoggydog@gmail.com.

This campaign has raised £473 so far – please donate here if you haven’t done so already. Foggy is raising funds for M.E biomedical research with Cure ME/MECFS biobank.

The post Speech and Language Therapy For M.E Voice Issues first appeared on ME Foggy Dog.

I haven’t written one of these for a while.

I haven’t felt able to write a spontaneous M.E-related blog that isn’t part of a wider campaign or doesn’t have a specific purpose. The world, and a big chunk of its residents, has got very serious and hardened. There seems to be very little light and shade, with opinions and standpoints being very left and right and black or white. The fun left the building in March 2020 but I’m bringing it back…… to Foggy HQ at least.

Since catching Covid19 in March 2020, I have found it particularly difficult to differentiate between M.E and Long Covid symptoms. My M.E experience had been pretty much the same for over a decade, fluctuations could be predicted down to the hour, sleep patterns were entirely predictable, and I had settled into my own personal M.E routine. I knew what was, and was not, within my limitations and I was able to plod on quite nicely in my own M.E-restricted life.

However, Long Covid has given me new symptoms that had never been part of my M.E experience. My ‘husky’ M.E voice was gone and I was now croaking like a frog. My slight breathlessness was replaced with gasping for breath. My suspected ‘Costocondritis’ from a few years before had now bred to include a whole family of ribs and connective tissues, my ribs now feel like they are being nibbled by tiny Piranha fish from the inside of my rib cage – the movement of breathing occasionally hurts. My lungs feel ‘full’….something I hadn’t experienced before, but all tests came back ‘all clear’.  I get the rash, that I have had intermittently on the tops of my feet when I ‘only’ had M.E, on my face now I also have Long Covid. My joints ache like never before and I feel like the Ready Brek person, I had joint pain with my M.E but not hot joints. Earache/pressure in the ear that started this whole rollercoaster ride of M.E (Labyrinthitis) and has always been ‘weak’ is one of the rarely acknowledged but always there symptoms that no amount of steroid nasal spray seems to dissipate.

I have had more referrals and hospital appointments than I ever had with my M.E which I am both grateful for and slightly irritated by. Where was this level of concern when I got really sick in 2006?

To be clear, when I say I have new symptoms, I mean they are new to me. I need time to work out if they are new/worsened M.E symptoms or Klingons from other chronic illnesses that are desperately clinging on to my weary body.

The voice thing is a pain, any kind of exertion now means that I sound like Kermit at least 4-5 days a week, sometimes my voice ‘goes’ to the point of causing me to be mute. Not great when you record regular podcasts and Facebook/Instagram lives! Foggy is enjoying the peace and quiet in Foggy HQ though. It FEELS like my vocal cords are stretched, and taut, and as if they will snap if I don’t rest/stop talking. I wonder if this  is due to the sensation of breathing in smoke from standing too close to a BBQ that I had during the acute phase of Covid19. That sensation felt as if my throat was ‘scorched’ and very dry.  I saw the ENT Dr a couple of days ago and he stuck a camera up my nose and down my throat (NOT PLEASANT! It made both of my ears pop which was unexpected). My vocal cords are ‘fine’ and undamaged – whoop…but also not whoop….he could not explain what was going on. But he has referred me to Speech and Language Therapy – paws crossed they can help! NOTE: I have never been referred to Speech and Language therapy for any M.E speech-related issues – slurred speech anyone?! He also said my ear pressure is likely inflammation in my Eustachian tube , I can’t remember if he suggested treatment….I don’t think he did.

I’m now waiting for Rheumatology and Neurology referrals to transform into appointments – pixie-like with fairy dust!

Paws crossed these appointments can confirm my suspicions that my ‘Long Covid’ is in fact a few more M.E symptoms (add them to the pre-Covid19 list!), Ehler-Danlos Syndrome, and Mast Cell Activation Syndrome. I had traits of EDS and MCAS before 2020 but now I have the whole shebang (though still ‘mildly’ affected).

My fluctuation predictability and sleep pattern have gone out of the window, I think my body is still trying to get back to some kind of ‘routine’. PEM went weird for about a year but has now started behaving ‘normally’ again which is oddly reassuring. I feel like I am getting a bit of me and my M.E ‘normal’ back and that is a good feeling, weirdly. It’s what I know, the unknown is much scarier.

That’s it for now.

Love from Sally

and Foggy (OBVIOUSLY)

xxxxxx

Few bits of info relating to fundraising –

Foggy and I would be grateful if you could recycle your old stamps to raise funds for us – read info here

Portsmouth Community Lottery – £25000 is top prize, weekly winners and ME Foggy Dog get 50p of every ticket sale (50%) Sign up here

Foggy and I have plans for 2022 and this fundraising will help to make sure those plans happen.

The post Everything Has Got A Bit Serious, Hasn’t It? first appeared on ME Foggy Dog.

When I first started ME Foggy Dog in 2014, Foggy’s Followers got used to me being awake at ‘stupid o’clock’ (usually around 2am), being wide awake and getting on with Foggy work. It was mine and Patch’s time alone – he would sleep and keep me company with his snoring and chasing squirrels in his sleep while I wrote blogs, sent hopeful emails to various celebs, or chatted to Foggy Followers all around the world on Skype (Gotta love different time zones when you have insomnia!). I used to be awake at stupid o’clock 2-3 times a week, on the other days my body stuck to what I had ‘trained’ it to do thanks to my local CFS service. I had stuck to a routine of going to bed at 10pm every night and woke up at 6.45am every morning regardless of what day it was. My body got so used to those hours that even now it’s rare for me to sleep past 6.45am and my body automatically winds down ready for bed from 9.30pm onwards.

Over time, my sleep and sleep disturbances have changed. I only have insomnia 3-4 times a month and it is usually menstrual cycle-related.  The way I do Foggy work has changed drastically because of the way my sleep pattern has changed.  I rarely find time to do Skype chats (sorry, I miss you too!) and I struggle to find the time to do some of the things that I used to do with Foggy’s fun campaigns. My mind boggles with the fact that I used to work full-time AND run ME Foggy Dog – HOW?!  It would seem there were some perks to having regular insomnia 5 years ago! I now, contrary to the advice given to me by my CFS service a long time ago,  listen to my body in terms of when to have a nap. I was told not to ‘give in’ to sleep and to give my body a routine. I know I’m not alone in being given that advice. While I do see it as good advice in terms of sleep at night, I think to tell an M.E patient to force themselves to stay awake during the day and ignore what their body is craving is just plain crackers. I often simply cannot keep my eyes open, my body stops functioning, and I need a complete shut down in the form of a snooze in the afternoon. An indicator that I am starting to not function is usually the number of clumsy accidents I start to have ie. cutting fingers on knives, banging toes on door frames, slamming fingers in drawers. Brain and limbs not communicating = accident waiting to happen.

For the uninitiated, ‘rest’ is often not sleeping. Patients are able to ‘rest’ simply by tuning out from what is going on around them. No TV, radio, sitting in a quiet, dimply lit room is often enough to allow a patient to slightly recharge. Whilst rest is essential for patients, sleep isn’t. The reason I say that is that our sleep is unrefreshing. It wouldn’t matter if I had 2 hours of sleep or 8 I would still feel as if I had only slept for 5 minutes. I never wake up from a nap and ‘feel better’. I wake up still feeling like death warmed up but am back to functioning again.

There are also many patients who have hypersomnia, they can sleep for hours on end, particularly during a crash. That is not my experience of M.E sleep disturbance. I think the longest duration of sleep I’ve had since my M.E hit back in 2006 has been around 10 hours. I often read tweets from patients who have been asleep for 15 hours or more at a time.

Whether an M.E patient has hypersomnia or insomnia our unrefreshing sleep remains the same, this M.E symptom is one reason as to why we never manage to fully recharge our energy battery.

Love Sally

and Foggy (OBVIOUSLY) xxxx

p.s Foggy is currently on his way to NZ. He has now travelled 156,147 miles!! This was him horseriding on a beach in Mexico at Christmas!

Foggy is working incredibly hard to raise ME research funding for Cure ME/ MECFS Biobank. He has been disappointed with donations so far. His currently total is £670.13 and he has 5 months left of this World Tour.

Don’t forget to donate – https://www.justgiving.com/fundraising/mefoggydog

Thank you and Foggy snogs xx

The post M.E and Sleep first appeared on ME Foggy Dog.

Read this list of hangover symptoms, it could almost be describing a big chunk of M.E couldn’t it?!

• Fatigue and weakness
• Excessive thirst and dry mouth
• Headaches and muscle aches
• Nausea, vomiting or stomach pain
• Poor or decreased sleep
• Increased sensitivity to light and sound
• Dizziness or a sense of the room spinning
• Shakiness
• Decreased ability to concentrate
• Mood disturbances, such as depression, anxiety and irritability
• Rapid heartbeat

Symptoms

I have fond memories of actual hangovers, I never minded feeling rough the ‘day after the night before’ because I had a blooming good time getting into that state!! It was worth it! The hangover came the morning after a kebab (garlic mayo…mmmm), giggles with other revellers in the taxi rank or walking home carrying my shoes (why do women do that? Probably because our feet are killing us!).

Having the same symptoms with M.E is no fun, it isn’t ‘worth it’. Feeling like you tried to go drink to drink with a bunch of Royal Marines in Union Street in Plymouth (oops…insight into my former life!) when you were actually as sober as a judge, at home in bed by 7.30pm, with a hot chocolate and Netflix, and feeling hungover doesn’t have the same accompanying fond memories!

The feeling of being off-balance and slightly unable to cope with functioning is a daily occurrence. The hungover feeling adds to my clumsiness, my spatial awareness is virtually non-existent. In my previous employment, my employer once accused me of being drunk in work. I hadn’t touched a drop for weeks but I was feeling exceptionally hungover because of my M.E. My slurred speech was quite bad that day and brain fog, added to the above hungover symptoms, meant I was a bit of a burbling mess!

Alcohol, like M.E, causes inflammation. Maybe that’s why the symptoms are so strikingly similar. That’s where the similarities end though! Alcohol = fun and temporary hangover.  M.E = Feeling ‘ill’ to varying degrees of severity, often with pain, with no end in sight.

I know which one I’d rather have!

Love Sally

and Foggy (OBVIOUSLY)

Don’t forget to donate!  https://www.justgiving.com/fundraising/mefoggydog Thank you x  Foggy wants to raise oodles of cash for Cure ME.

The post M.E Can Be Like Having A Hangover first appeared on ME Foggy Dog.

Foggy is snoring softly in Foggy HQ this morning, I’m letting him have a bit of a lie-in. He’s fidgeting so I know he’s dreaming about squirrel chasing! I’m making the most of the peace and quiet by writing this blog.

As you know, I am in the process of setting up an online training organisation about M.E./C.F.S. If you are an avid follower, you will also know that I detest the term C.F.S. Whether it is the same as M.E. is neither here nor there where my hatred of the name is concerned. How can an illness with many symptoms be summed up by just one of them?

As I explained on Foggy’s new website, I am going to treat M.E. and C.F.S. as the same illness until someone in a white lab coat definitively says they are two separate conditions. Charities worldwide are calling it M.E./C.F.S. and I am taking their lead.  At this moment in time, I’m concentrating on educating people about the human experience of the condition. I don’t need to confuse people with arguments about the name. I want to bring about progress in terms of how we are supported in our daily lives; we won’t get that if we don’t start educating the professionals who have a duty of care over us.

From day one, I have made it clear that 12 years ago I was diagnosed with C.F.S. by a locum GP. He said the words ‘I think you have Chronic Fatigue Syndrome. Think yourself lucky you don’t have M.E. ….that’s so much worse’. Over time, I came to see that I meet the criteria for M.E and so began to say that I have M.E. My GPs now also agree that I have M.E.  To be honest, as many doctors don’t know enough/anything about M.E./C.F.S. it’s hard to know whether they are right to agree with me!

I am doing a lot of reading (as much as my M.E. allows) to make sure that the health info mentioned on stripylightbulb.com is correct. However, our knowledge base changes so blooming frequently it’s proving to be a tricky task! Thank goodness my business will have a narrative approach devoid of medical jargon! I chose to do it that way because, whatever is being argued about, whatever declarations are made from various places around the globe, the human experience of the condition doesn’t change.

I saw something on Instagram recently (the info on it dates back to 2011) ; it was an image that showed Post-Exertion Malaise (PEM) is a CFS symptom and Post-Exertion Neuroimmune Exhaustion (PENE) is the M.E. symptom. News to me! From day one of Foggy, I’ve said that M.E./C.F.S. peeps call P.E.M. ‘payback’. Reading the text below, I can categorically state that I have P.E.N.E. The definition clearly describes what I experience when I go through what I had previously been calling Post-Exertion Malaise (I thought that P.E.M. had all of the things listed under P.E.N.E.). I have never been corrected by any other M.E./C.F.S. patient.

Is this another example of another classification that we don’t need? If you could let me know I would be very grateful! As there is still confusion as to the relationship between M.E. and C.F.S. how can we say that one condition has one type of ‘payback’ and the other has something different?

What worries me, yes it genuinely worries me, is that if I can’t make head nor tail of developments how can I expect the wider general public to engage with such a complicated and difficult to understand condition? I know it is going to be a very hard, uphill struggle and I am more than up for the challenge, but I do feel these almost daily definition changes are not helpful.

Love,

Sally

(and Foggy OBVIOUSLY)

xxx

The post P.E.N.E. or P.E.M.? It’s a mystery! first appeared on ME Foggy Dog.

I had a new symptom start around 6 months ago and, because of the infamous being ‘fobbed off’ incident, it was only investigated this week. Here’s what has been going on.

I started to get pain in my right breast that could have been caused by any number of factors. I assumed it would most likely be related to hormonal changes as I suspect I am now perimenopausal (not confirmed by blood tests but signs are there). I found a large painful lump that was tender all of the time but had started to be severely painful when I moved. At the moment, just the movement involved with breathing is painful.

I have been speaking to a couple of Foggy’s medically trained Followers about it privately and their support has been amazing. When you are ‘fobbed off’ by a GP you kind of have to turn to friends for advice. I have now changed GP practices and the new GP is taking me seriously! I have been referred to hospital for tests for all of the things I tried to bring to the attention of my old GP a couple of months ago.

This week I went to the Breast Care team at Q.A Hospital in Portsmouth. I had the full works – manual investigation, mammogram, and ultrasound. The team were very friendly, approachable and completely put me at ease. What a contrast to how I am treated with M.E./C.F.S. stuff! I said as much to the consultant and she said it was shameful that medical professionals are arrogant enough to think they know everything about the human body. She empathised with our plight.

Anyway, the consultant concluded that I have a musculoskeletal thing going on. So, the problem is with bones and the surrounding tissue rather than the breast itself. She didn’t give me a label to call it by (it may well have one, I just don’t know it). She said my problem is exacerbated by having a ‘small frame’ (I LOVE this woman lol) and an ‘ample bosom’ (um…thanks). Moving the weight of said ‘ample bosom’ causes the pain. Suggested treatment was in the form of getting a more well-structured bra (granny bra here I come…booo. MEN, you have no idea how difficult it is to find a well-fitting bra!) and rubbing anti-inflammatory painkiller gel into my breast.

I have been told by many of Foggy’s Followers that musculoskeletal chest pain is common with M.E./C.F.S. I said this to the consultant. She said that she didn’t know if that was the case but that musculoskeletal pain is common amongst women in general. I’d be interested to know if M.E./C.F.S. patients are at a higher risk. I’ve done a bit of online research but couldn’t find any research info. I also have Hypermobility Syndrome so have wonky cartilage, I wonder if that is part of the issue.

It’s been a bit of a nightmare week with lots of appointments but at least my current health stuff is being dealt with and being investigated.  I had a blood test yesterday. It’s part of the investigations into my nerve pain issues. It never rains but it pours! Once I know what is going on with that, I’m sure I’ll be writing a blog about it!

Love,

Sally xxx
(and Foggy OBVIOUSLY!!)

The post Chest Pain and M.E./C.F.S. first appeared on ME Foggy Dog.

Foggy is travelling to Christchurch, New Zealand and is surrounded by the bubbly loveliness that is first class (jiffy bag). To bide his time Foggy is going to tell you all about Sally’s issues with digestive problems.

Sally has had problems with reactions to certain foods, bloating and discomfort (to name a few symptoms) her whole life and was usually fobbed off by doctors who just said she had IBS and to get on with it. Last year Sally requested a colonoscopy/endoscopy to rule out anything more sinister as more and more foods were causing a reaction.

The colonoscopy found an inflamed area in her colon. Dr’s said they couldn’t see a cause and said that a lot of people fall into this ‘grey area’; there is a reaction to something but doctors have no idea why/what. Again, she was sent away and told just to avoid foods that irritate her digestive system. Easier said than done!!

The Horizon programme this week in the UK said bacteria in the gut could be linked to allergies; this made sense to Sally as she believes many of her issues come from her gut/digestive system.

Hopefully any future research that is funded by this campaign, and others, will help to find out whether there is a link between the gut/digestive system and M.E.

Foggy is going to sleep now; this is a LONG flight!

Foggy snogs xxx

The post Digestive Issues first appeared on ME Foggy Dog.

Payback is something that M.E/C.F.S. patients mention all the time, as a community we know what payback is and we don’t need to explain to each other how we are feeling. However, Foggy is all about raising awareness and as it’s been a while since I blogged about payback, it’s time for another go at explaining what it is!

Payback is what the M.E/C.F.S community call the medical term Post-Exertion Malaise (P.E.M.). It is a key characteristic of our condition. The M.E. Association defines P.E.M. as:

The key diagnostic feature of ME/CFS is the way in which symptoms worsen after activity is increased beyond what the patient can tolerate. Such activity, physical or mental, has a characteristically delayed impact, which may be felt later the same day, the next day or even later. This is followed by a period of relative recovery which may last for days or even weeks. The amount of activity that provokes increased symptoms is related to severity and in some people, can be very modest.

So, that’s what it is in medical terms. But, what does it feel like from a human perspective? A bit like the Dementors in Harry Potter books, payback sucks the life out of you.

Personally, I feel like a limp wet rag that has been wrung out and left to dry. I talk like a drunk person because the muscles in my mouth and jaw simply don’t work properly and I slur my speech. I ache all over, moving limbs is often an impossible task. On particularly bad payback days, I lay on my bed unable to move my arms and legs due to a kind of paralysis. My brain simply doesn’t know where my arms and legs are so the chances of being able to move them aren’t THAT high. I’ve noticed that my mouth droops, possibly because the muscles around my mouth have gone floppy. Another signal that I am going through a payback day is the colour of my skin. I go very white. As if all of my blood has left my body. My freckles stand out like a dot-to-dot. My blood pressure is usually on the floor during payback, usually just on the ‘safe’ low limit. So far, touch wood, M.E/C.F.S. and payback haven’t caused me to faint. That’s not the case for many other patients though.

On standard days we feel like we are wading through treacle, it’s the same on payback days but we are wading through treacle with 30lb weights on our ankles. I am constantly confused on payback days. My brain is malfunctioning and unlike a computer, I can’t just turn it off and on again! I have lost count of the number of times I have stood in the middle of the kitchen not being able to work out how to turn the oven on or establish what the noise was (overflowing tap). Cognitively, I’m a mess on payback days. I don’t even attempt to concentrate on tv, magazines, phone calls as it would be a fruitless task. I watch movies I’ve seen many times before so I don’t have to concentrate! It also means I can sleep through most of the film without feeling frustrated. Payback days are usually spent sleeping in bed, it’s the only way to ride it out. Fighting it is impossible and attempting to fight back would be pointless.

I tend to say that my own payback hits both the same day, if I have had an energy-sapping morning, and also 48 hours later. My body pays twice-over for using limited energy irresponsibly. My body tells me off by making my M.E worsen significantly. More recently, my payback hasn’t hit when anticipated and it has hit 4-5 days after exertion. This is an unexpected pain in the bum as I used to be able to plan my exertion and rest days to manage my ‘good and bad days’. This is becoming trickier and trickier to do and my payback is hitting when I should have already gone through payback and recovered.

I’ve said many times before that M.E/C.F.S. is a unique and individual illness. M.E/C.F.S patients all have their own range of symptoms. Payback causes whatever M.E/C.F.S symptoms you have to worsen significantly. For some that could be pain, nausea or migraines and for others it could be skin rashes, headaches, I.B.S. etc. You get my point.

However, across the board, the ‘Dementor’ feeling of having the life sucked out applies to the whole M.E/C.F.S community. That is a significant and unwelcome characteristic of payback. It is an all-consuming, miserable invisible cloak of rubbishness.

Love Sally
(and Foggy OBVIOUSLY)
xxx

The post M.E./C.F.S.: What Is ‘Payback’? first appeared on ME Foggy Dog.

Having M.E sometimes turns me into a super sleuth. Just call me Miss Marple! Trying to work out exactly what has caused a symptoms flare can often be a fruitless task, purely because of the complex nature of our illness but sometimes the cause of discomfort can be nailed down and prevented.

Many M.E patients have sensitivities to sound, noise, chemicals, and odour. My own sensitivity to odour has been heightened over the past year or so. In particular, sensitivities have flared dramatically when I am washing clothes and bed sheets. I am going to give you a timeline of my investigations to show how my super sleuth conclusion came about!

5 years ago – My tree pollen allergy flared and I had to stop drying my clothes and bed sheets outside on the washing line as the odour caused a reaction in my respiratory tract and I had breathing difficulties. So, drying everything on clothes airers indoors began. Bed sheets were dried in the tumble drier though just for speedy ‘get them back on the bed’ turnaround. Allergy – prevented.

1 year ago – Breathing difficulties, sinus problems, itchy/watery eyes started whenever I put on freshly washed clothes or slept in just-washed bed sheets. I realised that my parents had recently changed their brand of washing liquid so I started buying my own hypo-allergenic brand. I had to try 4 brands before I found one that I didn’t react to. Problem solved.

4 months ago – We needed a new tumble dryer. We bought a new condenser tumble dryer. As it was a nice hot early summer I was able to hang the sheets in our hot conservatory and they dried in a couple of hours. Perfect! Allergy-risk free!

3 months ago – Breathing difficulties, sinus problems, itchy/watery eyes re-started but this time only when I was in bed. What was going on?! It was a rainy week and I had used the shiny new tumble drier to dry my sheets (more of that in a bit) I wondered if my allergic reaction was because my head was in such close proximity to a just-washed pillowcase and duvet cover. So, maybe I was still allergic to the hypo-allergenic washing liquid?! I changed to Eco eggs that have zero chemicals in them. Allergies disappeared again. Great!

1 month ago – The really hot summer came to an end and I had to start drying bedsheets in the tumble dryer again. Breathing difficulties, sinus problems, itchy/watery eyes reappeared. For goodness sake! Has anyone else got a condenser tumble dryer? Have you ever sniffed inside the drum? Ours smells metallic/musty. The exact same smell that is on my sheets at night after they’ve been washed.

I Googled to see if anyone else had the same problem. I didn’t see anything about allergic reactions but lots of people in forums have said that they also notice a metallic/musty smell inside their condenser tumble drier that they found unpleasant. Not just me then!! Well, apart from the allergic reaction thing!

If any of you are, like I was, driving yourself crazy trying to work out what you are allergic to, sometimes you have to think outside of the box!

The Callow house will now look like a Chinese laundry as I attempt to avoid pollen of various forms and the demon tumble dryer!

What a palaver!

Love,

Sally
(and Foggy OBVIOUSLY)
xxxx

The post Allergic To My Tumble Dryer! first appeared on ME Foggy Dog.