All about ME

ME Image

All about ‘ME’
Ok, so this looks very big-headed, dramatic and ‘ooooh let’s talk about me darling!’ But it’s not. Ok, yes, actually it is but it’s not what you think! You see, the title of this post is a play on words because it IS about me, but the ‘ME’ also stands for Myalgic Encephalomyelitis. It’s a health condition that’s usually referred to as M.E and is sometimes called Chronic Fatigue Syndrome (or CFS) and it’s part and parcel of what’s lead me to write a blog, because about 6 years ago, I developed ME. Because the condition is a complicated one and one with no current effective medical treatment, it’s something that’s lead me to change my lifestyle and develop healthy habits. To begin with I’m going to give you a description of what the condition is so that you can understand how it has impacted on me.

What is Myalgic Encephalomyelitis?
Myalgic Encephalopathy is an illness that it is believed to affect an estimated 250,000 people in Britain. It is said to affect people of all ages and the only constant is that it’s onset is linked to either viral infection, an accident or operation. Because research is unable to determine why some people develop the condition it can often be referred to by a number of other names, such as Chronic Fatigue Syndrome (CFS), Post Viral Fatigue Syndrome (PVFS) or Chronic Immune Dysfunction Syndrome (CIDS). All of these terms refer to a condition that has one definitive factor and that, is that the person’s life will change dramatically.

What are the symptoms?
The most common and main symptom which has led doctors to rename the condition CFS, is persistent fatigue (tiredness). Fatigue is not the same as having a long hard day at work. In some ways it can be described as a jet lag feeling. It’s almost like you have run a marathon and completed mastermind at the same time, except you usually get these symptoms when you haven’t done anything remotely exerting.

Pains such as muscular, joint, headaches, general achy body (like when you feel like you’re coming down with a cold or have done too much)

Cognitive problems – usually described by ME patients as ‘brain fog’ – feels like you’re in a dream or have just woke up and been asked a mathematical question!

Difficulty in concentrating, focusing, poor short-term memory, getting tongue-tied or not able to quite get your words out or be able to explain what you mean

Disorientation, confusion (like when you’re talking and you lose your train of thought – it’s that feeling of ‘what the heck was I saying/ doing/ going to do!)

Sleep problems, usually at the onset, a patient will sleep for hours at a time and find it difficult to wake up. Usually once the condition has set in a patient will find it difficult to get to sleep, have disrupted sleep patterns and have bouts of insomnia

Recurring sore throat, often with tenderness of the nearby lymph glands.

Some patients may develop other symptoms as a result, such as depression, anxiety and panic attacks.

These are just some of the most common symptoms but some patients may have other symptoms such as Irritable Bowl Syndrome (IBS) or allergies to certain foods. It’s easy to see why it’s so complicated for doctors to pinpoint a cause and to develop a cure. It’s also easy to see why it’s difficult to give one name to so many symptoms.

The word syndrome is preferred by doctors for this condition because it characterises the illness by symptoms displayed and not the underlying disease process. The terms CFS/ME are used commonly but there is not ‘one size fits all’ for the symptoms as everyone has different levels of pain/ discomfort and ability. There are a small number of figures that show people can recover from the condition and go on to live a normal healthy life, but the general figures show that most people fall in to the category where they lead a life of fluctuating symptoms, continuously up and down.

Because ME is so complex, there is no effective medical treatment for the condition through the NHS, sufferers instead have to seek out private medical specialists. Research suggests that early diagnosis and rest during bad periods can be beneficial. Although this is quite unhelpful, it’s a great improvement for those suffering as over the years there has been a lot of debate as to whether the condition actually existed! In the past ME was referred to ‘yuppie flu’ due to the amount of city bankers and traders and the like suffering with the condition and was believed to be all in the patients head. Having the condition confirmed by medical associations however has not made much difference for patients as there is still no effective treatment through the NHS and it’s still misunderstood by many, especially workplaces and the benefits system. However, GPs are becoming more aware of it and some doctors will offer therapies such as Cognitive Behavioural therapy, Pacing and Graded exercise – all of which are aimed at helping the patient to cope and work with their symptoms. The downside to this is research has shown that these therapies don’t really work and in some cases can be counterproductive.

How ME affects me
Developing ME had completely turned my life upside down and inside out, making me go from someone who worked full-time (as well as part-time evenings and weekends), had a very active personal life (usually burnt the candle at both ends), to someone who can’t currently work and has to carefully monitor / manage every aspect of my day-to-day living, in order to have any kind of quality of life! However that said I still feel ‘lucky’ because although I suffer from most of the symptoms listed above, I don’t suffer from clinical depression (which alone is pretty damn serious!).  Since diagnosis I have gone through ‘trial and error’ sequences trying out different techniques to deal with my symptoms. The biggest change for me was in October 2013 when  I started on a specialised protocol devised and directed by a private doctor who is the prominent specialist in CFS in the UK. The treatment calls for me to follow a Stone age and Ketogenic diet to avoid certain food groups that I am intolerant to and I also follow a strict pacing and sleep routine. I have removed almost all harsh chemicals from my beauty regime, I use relaxation methods to help with pain and discomfort, and take a number of supplements to boost those that I have tested deficient in.  The protocol aims to target individual symptoms (identified through blood tests/ samples and treated according to my individual results) and helps heal the body – there is no guarantee that I will recover , but hopefully I will be in a position to be able to return to a life where I can go back to work and living a more active lifestyle.

Now I know that I come across quite positive considering I have a heck of a lot to deal with each day but truth is, I don’t like to be negative – it just leaves me feeling worse.  I still suffer from dips and my condition regularly impacts on my energy levels but rather than letting it get me down, I just focus on the small things I can do. One big change I have experienced with ME is that I had to stop being such an independent stubborn control freak (ha, true story). In order to get most things done in my day I have to rely on help from my husband. It’s not something I talk much about mostly because it took me a long time to accept (being so independent most my life) but now we have a system that works for us and I am incredibly proud that I have such a wonderful man by my side! It has to be said that I’m so grateful for all he does for me – If it weren’t for him you wouldn’t be reading this (or any of my posts) right now!  Very early on in my blogging experience that I realised that it was just too much for me to do and I was going to quit! Knowing how much I enjoy blogging my husband came up with a method so am still able to do it –  he helps me dictate, formulate and organise my posts – Yay! So here’s a big shout out to Mr Noodlechips 😀

How has ME lead me to blogging?
So when I began to consider keeping a blog I was asked, (and my husband even suggested) why not set up a blog all about having ME and how it affects my life. Well, the honest simple answer, is because it would be depressing! Now I know that may sound harsh but the truth of the matter is that ever since I developed ME, my whole life and everything I do has changed and has been impacted upon as a result. In some small way I feel (sometimes) like I’ve lost myself. Now I say ‘sometimes’ because it’s really only when I’m having a really (really) bad day that I feel like that but on the whole I know that I’m still me. And I believe the reason why I still feel like me most of the time is because I try (but occasionally fail) not to let the condition take over. I try to focus on the positives and look at all the good things that have happened as a result rather than focusing on and getting caught up in the negatives. Now don’t get me wrong, it’s hard and I do have (what my husband calls) ‘wobbles’ where I get overwhelmed if I’m having a particularly bad day and usually shed a few tears but it doesn’t often last long. (I’m a very strong person so I pull my big girl panties up, wipe away my tears and pull myself together!)

So, what exactly are the positives of having ME I hear you ask (as you furrow your brow and re read the paragraph on ‘symptoms’!). Well they are not directly positives as such, more like a silver lining – the good that I have managed to pull out from a bad thing happening, things that I probably wouldn’t have experienced or undertook had I not developed ME! (Ok, I hope you’re all with me so far!) So, let me explain….

Silver linings
By developing ME I ended up having to take time off work and spent a lot of time at my mom’s house where my granddad lived. My granddad was a great fan of an afternoon TV show and as a result of him being a TV remote hog, I used to watch the show with him each day. Being ill had made me assess how much time I wasted and worried over pointless things and I sort of developed a mantra of ‘you never know if you don’t try’ and ‘what’s the worst that could happen’. So when the TV show closed one day asking for people to audition to be on it, I thought ‘why not? ‘what’s the worst that could happen’ so I decided to go for it. I completed an application (which took me over a month), submitted it, had a telephone interview a few months later and was invited to a face to face audition. I got through all the stages and 6 months later won a place to take part in the show! It was an amazing experience (which did stretch me a little but it was worth it) and I managed to win a little prize money in the process. Whoop! …. So this is what I count as my silver lining, had I never gotten ill I would have never applied to audition.

After I filmed the show I had a lot of ups and downs with my health (ending up in having to take voluntary redundancy) but again, my silver linings are that from my winnings I was able to pay off what little debt I had incurred as a result of being off work sick, was able to take private training/ qualifications in holistic treatments (reflexology, reiki, Indian head massage, Hopi ear candle, massage), studied a self employment course and began the process to set up as self-employed. These are all things that were achieved from doing something I would never done had I remained healthy and in full-time work.

Now I’ve saved my biggest and greatest sliver lining (and blessing) of all till last. What is it? Well, as a result of getting ME, I ended up meeting my husband! In a long story cut short – my husband had recognised me from the show and approached me, we got talking and as they say the rest is history!

So you see there are lots of choices that I would never have made or been able to make had I remained healthy. Losing my job made me re-evaluate my life and use my time more effectively. Being so ill that I was bed ridden made me really appreciate the small things in life and made me see that sometimes you have to take chances. Better to try and fail than fail to try! And if you try and succeed there are so many opportunities that can stem from that and you will probably feel a fool for not giving it a go sooner.

So the way I see it is that my blog is another silver lining of ME. It’s somewhere I can talk about the health and wellbeing experiences that I have gained from having the condition. It’s a place where I can feel normal, talk about things that interest me and keep me active on the days I feel well, while I am at home. It’s also a way to share all of the little tit-bits of information that I have found useful and believe could be useful to someone else.

ME or not ME, that is the question!
Now I know that this article says that I didn’t want my blog to be about ME but then goes on to discuss the condition but I thought it was important to explain what it is and how it affects me, as it was the trigger that lead me to blogging. I felt that by explaining it rather than brushing over it, would help people to understand a bit about my journey so far and why health and wellbeing is so important to me. However I don’t aim to write any further articles specific to the condition because alternative therapies and techniques are individual to each person. What may work and be helpful for me may hinder another persons progress. What I will do to help people who suffer with the condition and may be looking for new things to try, is that any articles about techniques/ therapies or habits that I have tried and have help helped alleviate my symptoms, I will tag them so that these items can be specifically searched for on my site. If this is not enough and you are an ME sufferer and would like to ask me any questions about what methods I have tried please email me and I will be more than happy to share these with you.

Trust me, I’m NOT a doctor!
Finally I need to point out that I’m no health expert and the items that I discuss will be based mainly on my opinion. If and where I am able, I will add in links and references to sourced information and will try my best to ensure that the details I give are reliable. However I am human and I may make a mistake or get something wrong (although I will do my best to prevent this). If I do, or even if you just have an opinion that’s different to mine and think it should be mentioned please comment or email me because I do want to hear what you have to say. I love to find out new information and I enjoy it when I talk about something and someone challenges or add something to what I already think and know. I like to be open-minded enough to not always think I’m right and like to hear other people’s thoughts.

References
In order to explain ME, I wanted to ensure that the details I gave were correct. I did this by reading Chronic Fatigue Syndrome for Dummies (by Susan R. Lisman, Karla Dougherty, 2007, Wiley Publishing ISBN 978-0-470-11772-9) and by reading information on the ME Association website, the Patient Website and Wikipedia

Anyone going through ME should take a look at the Chronic Fatigue Syndrome forum as it is a huge source of information from types of techniques to specialist doctors who are highly recommended.

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