You & M.E.

I thought I would share with you what it's like living with M.E.

Myalgic Encephalomyelitis – ME
Chronic Fatigue Syndrome – CFS
Post-Viral Fatigue Syndrome – PVFS
Chronic Fatigue Immune Dysfunction Syndrome – CFIDS

No matter which name or abbreviation you use, the illness affects people of different ages, backgrounds, race, and most other characteristics you may choose to consider. The illness often follows a period of viral infection, but some sufferers experience a gradual decline into the illness.

What is M.E/CFS?

M.E. is an illness. M.E. stands for Myalgic Encephalomyelitis - which is a bit of a mouthful, but basically means muscle ("myalgic") and head ("encephalitic") symptoms.

Many sufferers experience all or at least some of the following symptoms to differing levels of severity:


Muscle symptoms can include:

• Severe fatigue upon exercise
• Muscle pain and spasms
• Influenza-like malaise
• Clumsiness
• Poor memory, concentration and balance
• Non-refreshing sleep
• Sore throats
• Enlarged Glands
• Joint pains

It's important to appreciate that the kind of fatigue experienced by many M.E. sufferers is quite different from straightforward "tiredness" most people have experienced. M.E. sufferers have likened the fatigue to "having their plug pulled out", or being totally drained of energy. And unlike in many other illnesses, exercise may make things worse.

Head symptoms can include:

• Headaches
• Dizziness
• "Swimmy" feelings
• Loss of concentration
  

These are not the only symptoms experienced in M.E:

Sufferers will often feel "ill all over", and experience many flu'-like symptoms; nausea, shivering, fever, and generally over-react to heat and cold. Some unfortunate sufferers may be in unremitting pain. Digestive problems are common; constipation or diarrhoea, gas bloating and bowel pain. Alcohol intolerance may also occur.

Depression and emotional problems are often a part of M.E, but it is important to realise that these are a symptom of the illness, and not its cause. Some sufferers are very emotionally volatile and unpredictable - they may get angry or depressed for no apparent reason, or even cry at the slightest upset. This may be due to the illness affecting the nervous system.

Any physical activity - even walking up or down stairs - may put some M.E. sufferers in bed for days or weeks, and even cause a major relapse.

Sometimes, you will see M.E. sufferers apparently able to do quite normal things physically, yet complaining of terrible fatigue and muscle problems. What you haven't seen is the price they pay afterwards for their physical exertion - perhaps days in bed recovering.

So, now that you know what M.E. is and how it can affect people, I thought I would share part of my story with you.

I was finally diagnosed with M.E. back in December 2007. I couldn't get a diagnosis from my GP, so I had to be referred to a specialist. It was then that I finally had someone believe that there was something wrong with me. Instead of just thinking that I'm making up illnesses. What a relief to have someone who not only believed me, but who also understood what I battle with on a daily basis. The specialist asked about my medical history, and also going my medical record he said that I have had the illness since 2000. There is a possibility that I have the illness for much longer than that.

I can remember so many times in middle school that I would catch everything that went round. Any cough or cold and I would catch it. I can remember how hard I used to find it to get out of bed each morning. It was so difficult for me to drag myself out of bed. It had taken me forever to get to sleep the night before, and then before I knew it I had to wake up. I always used to feel like I hadn't had any sleep.

Over the years I managed to "get used" to the feeling of tiredness and exhaustion. I would always struggle to get to sleep, then struggle to wake up, then struggle to stay awake. More often than not I would be late for school, just because I couldn't "get myself into gear". I figured that this must be how everyone feels when they wake up and get ready for their day. I had no idea that "normal" people didn't feel like this. I can remember my Mum would sometimes get annoyed that she had to keep coming to wake me up for school.

I remember so many times being sent home from school ill. Or in the morning I would say "I'm not feeling very well" but because I was saying it so often everyone must have thought I was making it up. This went on for years, right througout middle school and secondary school. I even managed to get Viral Meningitis, so I was out of school for 5 weeks. I managed to get it a second time when I was in college. I was 18 then and this is when the specialist thinks I ended up with M.E.

So, to fast forward a few years. By the time I had my first proper full time job at 19 I hadn't even been there for 2 months before I was off for 11 months. Luckily they kept my job open for me. During the 3 years that I was with the company I had MANY more absences and I couldn't tell them what it was that was causing me to be ill so frequently. It was SO frustrating to be ill "all" the time.

Anyway, to cut a very long story short I ended up losing my job in 2007. I still didn't know by this time that I had M.E. I lost my job due to a high level of absense. I had only been in that job since the beginning of 2007. So, due to a long absense after unsuccessful surgery I returned to work, only to end up being off sick every few weeks. In the end this was not tolerated and so I lost my job.

Since being diagnosed with having M.E. I still find that there are people who have never heard of it. So, they find it hard to accept that I am unable to go out and do things at times. They seem to think that I'm just being lazy. If I had a broken arm or leg then people would accept that there is something wrong, or that I could be in pain. As you can see from the above sypmtoms, M.E. can and is something that is difficult to cope with.

People don't appreciate or understand how something like M.E can seemingly take everything away from you. It's an invisible illness, and it is still something that isn't know about by a lot of people. There are so many things that I used to do, but I'm not able to do them anymore because I will end up feeling ill. If I had one wish, it would be not to have M.E. and to be able to have my "old" life back. Who knows though... maybe one day I will.

*IMPORTANT NOTE*

If you have any of the symptoms mentioned above or you are concerned that you may have a similar illness, make sure you visit your GP. Do NOT assume that you have M.E.

I am not a doctor (obviously) and I can't offer medical advice. I have just listed the symptoms that are common with M.E sufferers.

If you would like to ask me any questions about M.E. or you would like to share your thoughts with me please feel free to leave me a comment or write to me at gdshphrd2@yahoo.co.uk