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Sunday, 22 October 2017

Differences between Fibromyalgia and ME/CFS

Hello!

Sally is going to attempt to write about the difference between Fibromyalgia and ME/CFS. The illnesses are very similar and often get confused...here goes! She has brain fog today so this could be interesting! Love Foggy xx

Hi,

Since Foggy started in 2014, I have made no secret of the fact that biology is not my strongest subject. I always explain medical stuff as if I was having a conversation in a pub. Jargon free and simple! 

The cause of this blog was an interesting conversation my mum had at a doctor's appointment earlier this week. She was talking to staff about my Unrest screening and was explaining that I had ME/CFS myself...blah blah blah. She told me about the conversation when she got home. The bit that interested me was when the staff said this:

' ME/CFS? That's what Lady Gaga has isn't it? Well done her for being an
advocate of the illness'.

See?

Two things concerned me.
1. NHS staff don't know the difference between ME/CFS and Fibromyalgia
2. Lady Gaga 'coming out' may add to our issues of getting people to understand ME/CFS.

The two illnesses are exceptionally similar. But, from what I can make out, Fibromyalgia sufferers do not suffer from Post Exertion Malaise. This means that exercise is part of their 'treatment'. This could be why many ME/CFS sufferers are advised to exercise to manage their symptoms. Anyone who keeps up with our political fight will know that Graded Exercise Therapy (GET) has been slammed for causing symptoms to dramatically worsen in ME/CFS patients.

Many people have been diagnosed with both ME/CFS AND Fibromyalgia. My foggy brain can't understand how you can have both at the same time. If one benefits from exercise and the other worsens. If anyone would like to comment and explain that to me I would be grateful - JARGON FREE though please!

One thing is for certain, Lady Gaga definitely, 100%, cannot have even a smidge of ME/CFS.  She would not be able to perform those magnificent dance routines if she had our illness. I am yet to watch her documentary Five Foot Two but can say that Post Exertion Malaise would wipe her out 24-48 hours later. You cannot push through pain/fatigue with ME/CFS. That said, I am not down playing Fibromyalgia, I understand that pain, and fatigue-wise it is just as life destroying as ME/CFS.

There have been rumours in the medical world that ME/CFS  and Fibromyalgia could possibly be the same illness. I can't see how that can be. Yes, they are both chronic illnesses with many of the same symptoms but there are also distinct differences.

I think the sooner the healthcare professions see that exercise is good for one but not the other the better!

I hope that helped to clear up some confusion....I hope I haven't added to it!

Here are some links that you might find helpful.

www.fmauk.org - What is Fibromyalgia?

NHS Choices - Graded Exercise Therapy

Love,

Sally xxxx

Don't forget to donate and help Foggy to raise funds for ME/CFS research. Donate via Foggy's Fund. Thank you x

Wednesday, 11 October 2017

Sleep Issues and M.E

Hello!

Sally is being weird this week. Her sleep pattern is all over the place. Over the past week, her numbers of hours of sleep at night has gone: 8, 3, 6. 10, 3, 8, to 5 hrs tonight. Crackers! I have told her to write a blog about it...here it is.....

Ugh (translated that means hi),

It is currently 03.28 on Thursday morning. 

I had been laying in bed for the past hour or so...WIDE AWAKE but determined to not get up.

Sleep issues are one of the more surprising elements of having M.E. You would think that an illness that is also known as Chronic Fatigue Syndrome (CFS), would entail sleeping A LOT or at least sleeping a minimum amount of hours (8 is pretty standard...isn't it?). However, sleep disturbance and unrefreshing sleep are symptoms of this crazy illness. 

Many friends say to me that my sleep issues are the reasons why I am tired all of the time. No, it's because I have an illness. Sleep problems are just one symptom of it. It wouldn't matter if I slept like a log for 8 hours, I would still feel unrefreshed and as if I hadn't slept for even 5 minutes. I am kind of
used to functioning on auto-pilot. I've had nearly 11 years practice of feeling like a sleep-deprived zombie! Some days, like today, are worse than others. I've had a week of really topsy-turvy sleep and so my head and body haven't a clue what they are supposed to be doing!

Like 'normal people', I have stuff on my mind. That additional stress has added to my sleep problems but isn't the main cause. 'Normal life' just adds to the usual rubbish.

Sleep issues for M.E peeps are wide-ranging. Some people do sleep, and sleep, and sleep....endlessly and unrefreshingly (Fatigue is probably added to by medication for pain and other symptoms). Others have the same kind of pattern as me. Whatever the pattern, M.E means that even though we feel like we could sleep forever, many of us can't.

It was Mental Health Awareness Day this week, I am open about the fact that I have PTSD and depression. I don't believe it is anything to be ashamed of but appreciate that many feel the stigma. It made me remember what my GP said when he prescribed me Fluoxetine for depression. I was worried that the side-effect of 'may cause fatigue' would make my M.E fatigue even worse. He said (paraphrasing) 'would you rather have suicidal thoughts or be a bit more sleepy?'. Good point! Since taking the drug, I have found that I feel more tired but like he said, I guess I have to weigh up the pros and cons. You would think that taking a drug that causes fatigue would mean I would sleep more...nope! If only! If anything, it has thrown my sleep pattern out of whack, my body doesn't seem to know when it is supposed to be awake or asleep. 

Since doing CBT 10 years ago, I stick to regular bedtimes. I am, 95% of the time, in bed ready to go to sleep at 10.15pm. I'm usually asleep within about half an hour. My problem is that I simply can't stay asleep and have a habit of waking up at 3am. On the rare occasion that I find myself up and about at 11pm, I am excited! It's like being in a another world! Oooh, so this is what 'normal' people do post 10pm?! WOW! I usually feel like a bit of a rebel for daring to be awake past my bedtime. My life is so rock and roll!

Love

Sally xx
and Foggy OBVIOUSLY xxxx

Monday, 9 October 2017

M.E Online Community

Morning,

Before creating ME Foggy Dog I was clueless about the illness, despite being a sufferer myself. After 3 years of tests and being given the run-around, I was given the label I had been seeking...I finally knew what was wrong with me!!  A locum had been so blase about the illness that I didn't appreciate the seriousness of the diagnosis. I was told there was no treatment apart from the therapy sessions I was being referred for (CBT in my case). My naive, brain-fogged brain assumed that as there was no major treatment, it couldn't be a major illness....  So for the next 4 years, I struggled on. Desperate for anyone to realise that I wasn't just a little bit sleepy. Every month or so, a new symptom would appear. Every doctor's appointment concluded with 'just put it down to your Chronic Fatigue Syndrome (*Foggy* Grrrrr).

The idea for Foggy came about so randomly back in 2014. It only took a month to set up ME Foggy Dog. Time from the initial idea to the launch in a local cafe went by in a flash! I had no idea what was ahead but was braced for the adventure. I knew Foggy would be driven by social media but had
 absolutely no idea that an online ME community already existed. I also didn't know it had its own hashtag! (#mecfs) I wish I had known about the community years earlier, I certainly would have benefited from the help, advice, and support it offers.

This past week, I have met five mild sufferers who don't 'do' social media. They had never heard of Foggy, didn't know there was charity support available, and didn't know an online M.E community existed. These people all told me they felt forgotten about and isolated. I encouraged them to embrace social media as it offers much-needed love and support. Three of them didn't know the difference between mild, moderate and severe M.E. That worried me. They simply called their condition chronic. It shows that M.E sufferers aren't told about their own condition by doctors, we all have to self-educate. Four of the people I met this week didn't know about pacing. Their GP had never mentioned therapy to them. Weirdly, we are always told not to Google diagnose, but with M.E. it's the only way to find out what the heck is going on with our bodies. It is also weird that doctors are themselves looking at INACCURATE information online when dealing with ME/CFS patients.

There are many 'mild' M.E sufferers out there that have just got on with life (with great difficulty), and do what they can to get stuff done whilst feeling isolated and forgotten. I know this because that was me, I had no clue that there were 17 million people with my condition, all of us struggling with life; whatever the severity of our M.E symptoms. 

I am so thankful that I had a creative brain cell that was functioning normally back in 2014. I am proud to be able to raise awareness for our community and to bring us out into the light. 

Love

Sally xx
and Foggy OBVIOUSLY xxxx

Tuesday, 3 October 2017

Noise Sensitivity

Morning!

Foggy is in Las Vegas and Patch is currently in his favourite place surveying his empire (the garden). I'm going to take this opportunity to write a blog about something that happened over the weekend.

My Mum and I had decided to spend a quality afternoon together with a lunch at a nice restaurant and a trip to the cinema (We saw Victoria and Abdul). It was a half-full battery kind of day already but I chose to go anyway, mainly because the afternoon would be spent sitting down.

We had chosen to go to Casa Brasil, they offer a 95% gluten free menu so it was ultra appealing for me. We had booked a table online and were looking forward to a fab meal (Basically BBQ meat and all sorts of salad - love, love, love). We arrived and were met with a wall of sound. Both my mum and I contemplated leaving straight away. However, we took our seats and decided to give it a go regardless. Trying to get a table elsewhere would have been a nightmare. The food was fabulous and
the service was excellent. No complaints there. However, the volume of the 'background music' was set at exploding ear drum level. I couldn't hear a word my Mum was saying and she couldn't hear me either. The combination of my M.E noise sensitivity and my Mum's Tinnitus meant that it wasn't a pleasant experience. I could feel my energy levels flat-lining as my brain tried to overcome the noise assault. Having to shout was making my throat sore. The effort of straining to hear what my Mum was saying caused my glands to swell up and become painful. All diners were talking loudly over the music and so it became deafening as the restaurant got busier. It was 'Samba Sunday' and so I had been expecting music but not 'nightclub loud', music you have to shout over while you are eating! I would recommend that you only eat here when you don't want to talk/communicate with the people you are sat with! Their tag-line is 'Come hungry. Leave happy'....I'd change that to 'Come hungry. Leave with a headache'.

Bellies full with yummy food, we made our way across the complex to the Odeon cinema. My Mum and I have a habit of always taking ear defenders to cinemas as the sound is always too loud for us. Usually, it blocks out the majority of over-loud volume. Not this time. My ears and brain were assaulted for 3 hours (adverts/trailers/film). We could even hear sound from the movie that was playing on the screen next door (I don't think they had planes and machine guns in Victorian Britain). I had to keep closing my eyes as my senses were being assaulted far too much for my brain to cope. Most M.E sufferers tend to avoid cinemas because of the sound volume. I am usually ok with ear defenders, I was disappointed that they didn't help on this occasion. Why on earth does the sound have to be that loud?! So many health conditions are affected by volume level it is ridiculous that the cinema doesn't consider that as a factor when setting the volume. M.E., Tinnitus, PTSD (loud bangs?!) and many others that my weary brain can't think of right now.


I got home and 'died'. I was absolutely wiped out. Thanks to our 'fun' afternoon, I woke up this morning feeling like I have been run over by a truck. It is two days later and this is payback. I really don't know if it was worth it! A day at home working whilst pacing coming up.


Love,


Sally

and Foggy OBVIOUSLY
xxx