So what is M.E?

Seems like as good a place as any to start. 

This is the basics. The very basics. There is still a lot of debate and discussion about the illness and still a lot the medical profession don't understand about it. The following information is sourced from various NHS booklets, M.E/C.F.S organisations and my own experience. It is in no way limited to this information and the condition can present itself in many ways. Some people will have minimal symptoms and some people will experience many. 

The illness is usually referred to as M.E. (Myalgic Encephalomyelitis - yeah M.E. is way easier, I never remember this when asked), C.F.S. (Chronic Fatigue Syndrome - which I dislike for reasons I will probably blog about another day) or Post-Viral Fatigue Syndrome.

Symptoms can include but are not limited to:

- Long term overwhelming and persistant fatigue or exhaustion that is unlike the feeling of normal tiredness

- Mental fatigue, poor memory and concentration, difficulty with words and speech

- Muscle and/or joint pain

- Sleep difficulties including waking unrefreshed
- Heart palpitations

- Poor appetite and/or nausea

- Sore throat and swollen glands

- Headaches, dizziness, visual problems

- Inability to regulate temperature, sensitivity to temperature changes

- Low mood

- Sensitivity to light or noise

- Abdominal pain, IBS symptoms

- Mobility issues

- Problems with the nervous system

So how does it start? For many people it can start with a viral infection such as glandular fever or flu. It can also be triggered by stressful life events such as a bereavement, divorce, family problems etc. Sometimes it can be impossible to pin point an obvious start. It can affect all ages groups and people of all backgrounds.

There is a stigma attached to people who suffer from M.E. that it is just laziness. This is quite the contrary, studies show that M.E. is more likely to occur in people who are driven and lead active or busy lifestyles as it is often the case that these people do not give themselves time to fully recover from the initial illness or lifestyle event before continuing with their normal everyday routines and this can be how the condition begins. Then begins a downward spiral of events where on a "good day" they do too much which leads onto a "bad day" where everyday things become very difficult. This becomes a cycle known as "boom and bust". The longer this carries on the harder it can become to get well again.

Understanding the illness has been key to my recovery so far. By having an understanding of how and why things are happening to me I can learn how to control them and how to spot the warning signs I might otherwise have missed. I won't go into full scale detail right now of all of these things such as the way the muscles work (or don't work) and how breathing is affected, adrenaline etc, as I don't know who is going to end up reading this blog and how much they really would want to know about it. There is so much (useful and utter shite) information out there that you can take a look at. I have spent 18 months on a rehabilitation style programme through the NHS and still don't feel I have all of the answers. 

I hope this is of some use to somebody out there. I'd like this to be more of a forward moving blog but I do feel it's important to get the basics down and outline a little history too. I will do a post that is more personal to my own experiences, my diagnosis, treatment etc. It may just take a little time to work it all out, the last few years have been a bit of a blur of exhaustion, lost dreams and lost direction. I feel like I am only just rediscovering who I am and what I enjoy in life. I still have a long way to go but I have come such a long way over the last two and a half years.

Thank you for taking the time to read xx