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Friday, 16 February 2018

Cause and Prognosis

Hi,

I have been made aware today that some people believe the cause of M.E is known and that sufferers know what their prognosis is. I disagree. This blog will explain and clarify my standpoint.

I believe that a bout of Labyrinthitis (ear infection) was the trigger for my latest bout of M.E. However, it was not the cause of the illness. We don't yet know why one person, let's call her Sarah, gets Labyrinthitis, is laid low for 6 weeks but then gets back to life as normal with no repercussions. But another person, let's call her Tracey, has Labyrinthitis for 6 weeks, is well for a week but then
gets ill....very ill (as happened to me). Tracey's simple ear infection had triggered a debilitating chronic illness. Until we know the reason behind the two different outcomes, we don't know the cause of M.E. I run with the notion that there is something dormant within us, perhaps in our DNA or gut, that is activated/triggered by a virus, trauma, etc. But researchers have not established what that 'thing' is yet.

At the beginning of this blog, I wrote 'my latest bout' - this is my second bout of M.E. I had (undiagnosed) M.E in my teenage years. I became ill virtually overnight (we have never worked out what the trigger was) and it left just as quickly 2 years later. It is due to my first bout that I believe many of us don't have a prognosis. I have no idea if this second bout is lifelong or if it will vanish as quickly as the first bout many years ago. It's a mystery! 

This is what the M.E Association say about prognosis - www.meassociation.org.uk

What are the chances of recovering from ME/CFS?
Most people with ME/CFS fall into one of four broad groups:
  • Those who manage to return to normal health, or near normal health, even though this may take a considerable period of time.
  • The majority who make some degree of improvement but eventually tend to stabilise. They then follow a fluctuating pattern with both good and bad periods of health. Relapses or exacerbations are often precipitated by infections, operations, temperature extremes or stressful events.
  • A significant minority of patients remain severely affected and may require a great deal of practical and social support.
  • Continued deterioration is unusual in ME/CFS. When this occurs, a detailed medical re-assessment is advisable to rule out other possible diagnoses.
Using the above as a guide, I have no idea if I am in the first or second group. I may get better or I may not. I am now 11 years into this second bout with no signs of getting better. Symptoms are ebbing and flowing, some have improved whilst others have got slightly worse. My cognitive function has deteriorated over the past 6 months. I am hoping it is just temporary. I have spoken to a few other sufferers who are experiencing the same fluctuation in cognitive function so I know I am not alone in that.

It is true that severe M.E sufferers have a greater sense of prognosis (see group 3) but mild/moderate sufferers like myself don't have any idea of what is in store for us. We have no idea if our, occasional, slightly improved health means we are 'recovering' or if it is simply a fluctuation. 

I hope that clears that up and, despite a few followers disagreeing with me, I will continue to promote that we do not know the cause or our prognosis, until I see definitive proof to the contrary.

Love,

Sally
and Foggy (OBVIOUSLY) xxx

Saturday, 10 February 2018

Family Ties

Hi,

This post is considering whether M.E can run in families. I was unable to find anything on the M.E Association website but found this link from meresearch.org Does M.E/CFS run in families?

Anyone who has watched Unrest has seen that different generations of the same family can be struck down with M.E. Personally, I know a number of families that have two generations with the illness. It is hard to know whether it is due to genetics or probability, given the high number of sufferers in the UK/worldwide.

For years, it has been a running joke in my family that I have inherited all of the bad bits from my parents. My Dad has stretchy skin (Hypermobility Syndrome - without the pain), various allergies that have appeared over time, and in later life, has developed digestive issues (I.B.S/Colitis) and my
My family xx
Mum has suffered from migraines and light sensitivity for decades. It will always be a mystery as to whether the combination of their health conditions has lead to my M.E diagnosis. There doesn't seem to have been a recognisable chronological order as ailments have appeared out of nowhere with no identifiable cause.

I have had conversations with parents who blame themselves for their child's health problems; not just M.E, other illnesses too. Which, as I have said to them, is ridiculous and their child's illness was entirely unpreventable. It is simply how things have evolved and presented themselves. 

Something I have been struck by is how sometimes the child gets M.E first and the parent gets diagnosed decades later. Does that strike anyone else as odd? I have personally met these families and their circumstances make no sense to me in terms of chronological order. Does it worry me that my parents could get M.E? Yes, yes it does. Especially as each month brings new health issues that may or may not be M.E related - fatigue, memory, word finding problems etc. It could just be ageing but it could also be something more sinister. I am definitely keeping an eye on my parents....just in case.

Love Sally,

and Foggy OBVIOUSLY xxxx

Don't forget to donate! You can donate to Foggy's Fund via mefoggydog.org. Thanks x

Monday, 29 January 2018

M.E: Shame

Hello,

Let's talk about money. Yes, the one thing most people avoid talking about.

I talk openly and honestly about all aspects of M.E and it's knock on repercussions but have never fully addressed this aspect of having a chronic illness. So, here goes.

This blog is inspired by THIS YouTube video by Sophie Eggleton. It was posted back in 2015; I have only just discovered Sophie's YouTube channel. I agree with everything Sophie says in the video but here is my own spin on the subject.

I have no money. There, I said it. Since leaving full time employment back in 2016, I have only had the brain power and energy to earn drips and drabs of cash. Just enough to pay my bills each month. If it wasn't for the Bank of Mum and Dad, my situation would be even more dire than it is now. I am so grateful to them for the occasional bailout when an unexpected bill comes in. For 2 years, I have been too embarrassed to talk about my money problems, I have only confided in a couple of close friends. These are friends who, whilst not having M.E, are in similar financial situations for various reasons. 

I am 41 and live with my parents. I hate having to admit that when it crops up in conversation. I am very lucky that I get on with my parents and am very grateful for the roof over my head. My shame comes from my hopes and dreams of my childhood. Never would I have dreamed that I would be living in my parent's house at the grand old age of 41, childless (I never wanted any) and a spinster (ouch). My parents, like Sophie's, are retired. They should be able to enjoy their hard-earned time together without having an extra mouth to feed. I simply can't earn enough money to be able to afford my own place. I
don't have a boyfriend/husband to share bills with. House prices in Portsmouth are very expensive and, even without M.E, an average solo income would struggle to pay for housing and bills. Add M.E into the mix and it is a dire situation to be in. I own my own business (www.wordsangel.co.uk - shameless plug!), it's still relatively new and still building. It is ticking over nicely and growing steadily. However, I am unable to put in the necessary 18 hour days to build it as much as I would like. Every time I go business networking I feel exhausted just listening to tales of breakfast networking, driving to conferences, working lunches, and evening networking sessions (that is all done on top of a working day). Most self-employed people don't stop. Many would argue that working so hard is bad for health and well-being. True. However, it is necessary if you are a start-up business with one pair of hands and one brain.  Self-employment allows my body to work in tune with my in-tray. I can set my own hours and work from my bed if necessary. It allows me to make the best of a bad situation.

When I walked away from Uni with a postgraduate degree, the world was my oyster. I am an ambitious person and believed that I would get myself a good job, save cash and work towards getting my own place and build a stable future for myself. M.E has completely stopped that from happening. I can't hold down a full time job because my energy levels won't allow it. Even part-time hours won't work as the hours don't fluctuate along with my energy levels and symptom flare ups. The pressure and guilt I place upon myself is immense. I always feel as if I have to justify my life and make excuses because people don't understand my illness and subsequently, my situation.

Social media doesn't help. I am sick and tired of looking scrolling through posts of friends who are buying houses, buying furniture for their new houses, getting excited about their upcoming holidays, etc. I keep comparing myself to fit and healthy people who are able to work hard and reap the benefits of putting in long days at work. I wish I could be one of those people. Instead, I regularly have to explain why I  am in bed having a nap while they are at work slaving away to afford their lifestyle. 

Maybe I/we need to stop feeling ashamed of our financial situation. We are skint, not because of laziness or poor money management, but because of a disability. We are making the best of circumstances that are out of our control. We should be proud of what we manage to do on a daily basis despite having a life-altering illness. Maybe one day, I'll allow myself to believe that and stop beating myself up.

Love,

Sally
and Foggy (OBVIOUSLY)
xxxxx


Don't forget to donate - Foggy's Fund - Thank you xxx


Monday, 22 January 2018

Cervical Cancer Awareness Week

Hi,

I commented on this article earlier on Twitter. It's Cervical Cancer Awareness Week (in the UK) this week and there are many posts and articles online talking about cervical smears. Unfortunately, my tweet caused a few people to use it as an excuse to throw negativity at me so I have deleted the tweet. I don't respond to negativity. I figured I would write a blog instead to explain my view.

1 in 4 women in the UK are not having regular smear tests due to having a poor body image. I don't have a very good body image myself and a nurse friend once called me body dysmorphic (I think I'm bigger than I am/unattractive). So, I completely understand that smear tests would cause girls/women to feel embarrassed or uncomfortable.

However, millions, if not billions, of pounds have been spent on cancer research to reach the point of being able to offer free tests to diagnose this disease and to know how to fight it. To have that resource available but it not being used to its full capability is crazy. What will happen if/when these girls and women want to have children or need to be tested for an STI? All involve doctors and nurses being in that particular area of a woman's body. A sexual organ is the same as a big toe to medical professionals. They don't see it in the same way as we do.

To flip my argument around to an M.E perspective. Hands up M.E peeps who wouldn't mind (yes, we'd cringe and squirm but...) a rectal exam or cervical investigation if it would lead to a diagnosis or treatment? I would do ANYTHING if it would lead to being 'fixed'. I know I'm not alone in that. I think this article highlights the difference between 'healthy' people and their views on health checks (to prevent them from getting sick) and chronically ill people who would do anything to get better.

I hope I've made my point clear, I don't mean to guilt trip anyone. It is YOUR choice whether to have the test but it's a wasted opportunity if you let embarrassment stop you from attending your free appointment.

Love,

Sally xx

(brain fog has kicked in so sorry if my writing is a bit blah)

Thursday, 11 January 2018

What's Happening Now?!

Hello,

I wrote this blog in 2016 (was it really that long ago?!) and I seem to be in exactly the same situation. I am recovering from another broken foot/toe and my eyes are playing up AGAIN. My double vision started again 3 months ago, it's sporadic and so I haven't really thought much about it but it's been bugging me today, hence the blog.

As I said in my 2010 blog, the Emergency Eye Department (EED)told me my eye problems were caused by Propranolol and/or my M.E. They said that M.E caused muscles to work slowly and maybe the Propranolol side effect of 'weak muscles' was making the issue more noticeable. I came off the
Propranolol soon after and I noticed that the double vision and related eye problems slowly stopped.

I remember speaking to some Foggy friends about eye problems at Foggy's launch party. They also suffer from issues of double vision and achey eyes. They weren't taking Propranolol. We all said that we had never heard of M.E affecting eye muscles before, it was a definite...eye-opener (sorry!).

I haven't worked out a pattern yet. I'm not sure why I have double vision on some days but not others. It's not specifically when I am extra tired or lethargic. Sometimes it's when I wake up, other times I may have just rested/closed my eyes for a slow blink. I get the same double vision though. I agree with the EED, I think it is caused by weak eye muscles and my eyes are taking longer than they should to focus when I open my eyes.

I wear contact lenses. I used to wear them 24/7 but I had a stupid accident about 14 years ago. It involved a cup of boiling water, a flight of stairs, PJ bottoms being too long, and having severe burns to my entire face, including my eyes (I've said before that I'm ridiculously clumsy...right?!). Subsequently, I have very dry eyes. I have been told I can wear lenses but not for longer than 4 hours at a time. I also tend to stick to glasses as they have tinted lenses. But, on very rare nights out my vanity comes out and the contact lenses come out to play. Anyway, about 3 months ago, I noticed that on one of my eyes, the contact lens no longer fits properly. It doesn't 'stick' as it should. It's as if the shape of my eye has changed, so much so the lens doesn't lay flat against my eyeball. Opticians measure the shape and contour of eyes during contact lens checks and so it's obviously a 'thing'. So, I have booked myself in for an eye test. I have eye conditions in my family history (Glaucoma, Macular Degeneration) and so eye stuff is slightly worrying. It just seems weird that these 2 eye problems have happened at the same time.

I know I always say it but I think this shows that M.E affects every single part of the body! Muscles make stuff move and so it's hardly a surprise!

Love,

Sally
and Foggy (obviously)

Tuesday, 9 January 2018

Change for the Better...Hopefully

Hi,

I am attempting to come off anti-depressants! This will be my fourth attempt in 5 years but I am hoping I will be successful this time. Every time I try, something traumatic or very stressful happens and my mood dips/depression flares significantly.

I have written before about a conversation I had with my GP years ago when he first prescribed a low dose of Fluoxetine. I had noticed that fatigue was a common side effect according to the info leaflet. I was concerned that it would add to my already overwhelming fatigue. He said (paraphrasing) 'What's better? Suicidal thoughts or bit of extra fatigue?' I got his point but still...more fatigue?! I was barely
Smarties!
existing at that point and was only living to work, eat and sleep. 

I have noticed a marked decrease in my energy levels since starting anti-depressants and that is my main reason for wanting to stop taking them. I also think it is a good idea to come off and see if I even need to be on them now. I have been slowly coming off them over the past 6 weeks or so. My plan was to get more sunshine, exercise (we are talking extra 2 minutes a day...not joining a gym!) and to do more mindfulness to reduce anxiety. I am doing as many non-medicinal things as possible to make sure I can stay off tablets. Unfortunately, breaking my toe hasn't helped, if anything, being even more immobile has added to my anxiety. I am hopeful that, once I can get around independently again, my action plan will work!

Anti-depressants helped me through some very bad times (assault, cancer, bereavements, bullying - what doesn't kill you makes you stronger right?!) but I now want to see if I can use alternatives just as effectively. 

Wish me luck!

Sally xx

Monday, 8 January 2018

Another Dentist Related Blog

Hi,

My British Columbian Foggy friend sent me the following info in response to my request for details of how dental work impacts M.E symptoms. Thanks Kristina.

'My experience at the dentist prior to understanding about light and sound sensitivity...
First of all I was exhausted and frazzled when I showed up. I had forgotten my ice pack for my head and pillow for my legs. This might have contributed to my epic meltdown. Also, at this point, I am still unaware of my sensitivities to light and sound.
The hygienist warned me that the descaler is very loud. Again, I had no idea this would be a problem.The cleaning begins... Within minutes I feel my nervous system ramping up. I try to distract myself, do meditative breathing, but nothing is working. I suddenly realize that the dam is about to burst and I signal for her to stop. I am then completely overcome with what can only be described as a severe anxiety attack with significant pain - everywhere, along with cognitive breakdown. I kept trying to explain that it was the sound, but I couldn't stop sobbing for what felt like an eternity. The hygienist finally realized that it was the noise from the descaler that triggered the attack. The entire episode was traumatizing and humiliating.
When I first arrived at the dentist's office I was already having trouble forming thoughts and words properly. By the end of the appointment and my spectacular meltdown, I was being treated like a child or someone deemed unstable. I avoided going back for over a year and a half.
BUT, we did agree that from now on my cleanings would be done manually.
When I finally scheduled another appointment, I arrived with:✔️A pillow for my head plus my ice pack for pain.✔️A pillow for my legs and feet for pain.✔️Very dark sunglasses - the kind that protect from all sides.
While I don't like going back to manual cleanings, there was no pain, no nervous system meltdown, no M.E flareup.
I also had a very important conversation with my dentist. I explained the things going on behind my actions at the last appointment. But, I also said that - based on the conduct they witnessed - I could understand why they responded the way they did. Events that seem normal or mundane can be overwhelming for people with ME. One suggestion I would make would be to include M.E on the patient questionnaire. Or perhaps include a question for chronic conditions in general but with the space to elaborate. Then at least a conversation can happen before something traumatic does.'

I agree with Kristina, there are measures that can be undertaken by dental practices to ensure treatment is as untraumatic as possible. A questionnaire would be a great way to establish if the patient could possibly have light and sound sensitivities. These patients could then be encouraged to bring their own equipment - sunglasses, ear defenders etc. This would also cover people with migraines and other chronic illnesses. Prior knowledge would make the interaction much better for all parties.

Thank you to everyone who responded to my plea for info. It will all be mentioned in my talk at the end of next month.

Love,

Sally x
and Foggy (OBVIOUSLY)