Me and M.E.

Recently through twitter I have met some lovely people who have ME (CFS) I feel privileged to have been welcomed into their twitter lives. Its nice to not be alone, and its nice that twitter gives me the freedom to say how I am 'actually' feeling - its a sad truth that when most 'normal' people ask you how you are feeling they don't want an honest answer :(


I am lucky I am now able to work (have been since leaving uni in 2003) and that I work for an organisation that doesn't see disability as a problem. They have been very supportive especially as my ME flared up due to bereavement and the stress that followed for lots of various reasons - they operate flexible working which has let me change my hours to part time while I get back on my feet. 


For those who don't know what ME is:

Myalgic Encepalomyelis (M.E)

Other names:

In the UK

Chronic Fatigue Syndrome (CFS)

Post Viral Fatigue Syndrome (PVFS)

In USA

Chronic Epstein-Barr Virus (CEBV) or Syndrome

Chronic Fatigue Immune Dysfunction Syndrome (CFIDS)

In the past it has also been called things such as Yuppie Flu.

Why all the different names – it is still classed as an emerging disease and there are still conflicts over its validity and cause – research is still on going. It generally falls into 2 categories with doctors:

• those who believe that it does not exist or that it is psychological
• those who acknowledge it

There have been lots of studies over the years and the disease has been categorised and confirmed as physiological and not psychological.

The cause – still unknown, research is on going.

A name – they might agree eventually, but generally they are waiting to find out the cause before a definitive name can be given.

A cure – maybe one day……

The most common and widely accepted names in use at the moment:

UK – ME/CFS

USA – CFIDS

Diagnostic criteria - you must have severe chronic fatigue for at least 6 months, with no other medical condition identified as the cause and one or more of the following:

• substantial impairment in short-term memory and concentration (can have other forms of cognitive dysfunction)
• sore throat
• tender lymph nodes
• muscle pain
• multi-joint pain without swelling or redness
• headaches of a new type, pattern or severity
• unrefreshing sleep
• post exertional malaise lasting more than 24 hours

Other symptoms may include:

• abdominal pain
• alcohol intolerance
• bloating
• chest pain
• chronic cough
• diarrhoea
• dizziness
• dry eyes or mouth
• earaches
• irregular heartbeat
• jaw pain
• morning stiffness
• nausea
• night sweats
• psychological problems (eg drepression, irritability, anxiety, panic attacks)
• shortness of breath
• skin sensations
• tingling sensations 

In general symptoms are not improved by bed rest and maybe worsened by physical or mental activity.

It is generally diagnosed in women more than men and with onset generally being between mid teen to mid forties either after a virus or stress event. In terms of longevity it falls into one of 3 patterns:

• those who make a full recovery within a couple of years
• those who make a partial recovery and experience cycles of illness (remission/relapse). The severity of the cycles can vary and can sometimes be a case of learning to manage this and make adjustments to your life
• those who get progressively worse and end up severely disabled (this is rare).

Severity:

Mild: You are able to care for yourself, but may need days off work to rest

Moderate: You may have reduced mobility, and you symptoms can vary. You may also have disturbed sleep patterns, and sleep in the afternoon.

Severe: You are able to carry out minimal daily tasks, such as brushing your teeth, but occasionally you may need to use a wheelchair. You may also have difficultly concentrating.

Very Severe: You are unable to carry out any daily tasks for yourself and need bed rest for most of the day. Often in serve cases you may experience an intolerance to noise and become very sensitive to bright lights. 

Me and M.E.

I was diagnosed in 1998 (after repeated trips to the doctors, lots of blood test and eventually my Mum pleading with doctors that there was something wrong with me and she just wanted anwers) I was only 18. We think I got glandular fever (my symptoms started sometime during 1996/7), I can only narrow it down like this because of my experience during my A levels – I was exhausted and would fall asleep when ever I could – often waking up confused. I resorted to sleeping with the tv on so that I would have a point of reference when I woke up. 

Going from someone who is active and relatively healthy to someone who is profoundly tired with recurrent infections is a little bewildering and lonely, after refusing trips out or having to pull out at the last minute with no real reason means that eventually people lose interest in you and drift away (its certainly a test of who your true friends are). I struggled through my A levels, but once they had finished I pretty much crashed.

At my worse I was pretty much bed bound – I would have just about enough energy to get up in the morning and get dressed but then I would need sleep (sometimes the getting dressed bit was optional but it helped me to feel more human if I could struggle into clothes or at the very least a bra and knickers under clean jammies. I became a bit obsessed with jammies and bed linen, my bed was pretty much my world for a while). I had recurrent throat infections and was in so much pain that I could not bear people to be within my physical space let alone touch me. My headaches grew more frequent and my tolerance for noise got worse. 

I became intolerant to alcohol and different types of drugs (I now carry an epi-pen just in case - you never know when my body will decide to attack medication). Walking became painful and then there was the dizzy spells (I even manage to get dizzy when I am just lying in bed). And the most embarrassing form of cognitive dysfunction for me was (and still is) getting words muddled, the correct word is there in my brain but my mouth will either come out with something completely different or struggle to come up with anything at all. Sometime I slur my words and walk into things because my balance has decided to have an off day. Memory as well – I have to write down appointments and dates to remember, I struggle to remember events and things that have happened and yet random facts seem to stick and my ability to learn is fine – I just make notes and remember things by repetition. I suffered from depression, and anxiety with occasional panic attacks thrown in to make it interesting.

But I think the worst experience of being ill was the benefits system - I was on income support, then I got the disabled allowance. I was turned down for Living Disability Allowance (basically because I could do a small amount of things for myself they didn't seem to take into account the phyiscal cost to me) but then my world was turned upside down when I was made to to the All Work Test (or whatever they called it back then) basically they stopped everything and said I was fine to work - it seemed to be based on the fact that I could sit in a chair and answer a phone - not if I could remember the message or the fact that if I spent a day doing that then I would need a month in bed. Sure I would go out occasionally for shopping trips with my Mum or friends (I was a teenager) and yes I would look 'normal' like anyone else but what they didn't see was what happened when I got home behind closed doors. The pain, the tears, the despair all for those few hours of pretending to be 'normal'.

Anyway with the help of the wonderful benefit advisor's at my local council (who could see how ill I was) we took the decision to a tribunal and lost - the reason they said I was lying and basically in collusion with my doctor to fraudulently obtain benefits. As you can imagine I became very depressed and go figure I went back to claiming income support signed off with depression - with no problem at all. At the time the benefits system did not understand ME and I doubt that its improved. 

Gradually I started to be able to do more things and learnt to listen my body (a difficult lesson to learn and one that I still struggle with. I still get it wrong and pay for it) – the best way I have found of explain it is like a battery that you have to charge up and you have to find the balance of activities that don’t make it run out but help to keep it charged (pacing and switching), so for example if I want to spend a day at the beach I know that I cant arrange or do anything for the evening and following day and then have to take it ‘easy’ for a couple more days.

I decided that I needed to do something that would give me a better chance for independence in the future and went to Uni - again I was lucky and found a Uni that was very supportive. The course was modular and I was even able to change half of my degree towards the end of my first year as I wasn't coping with the large lectures. I wasn't able live in halls or take part in the normal uni experience freshers, the students and the Balls. But I think having a chronic illness has given me 'life experience'.

Since Uni I have been lucky to find jobs - short term contracts at first and then finally in 2008 a permanent contract :)

Where I am now:

I fall into the pattern of cycles it is unlikely that I will never fully recover (generally it is considered that if you are going to make a full recovery you will do so within the first 2 years), I have had to make adjustments to life to be able to cope.

I have to be careful that I don’t over extend myself. I still experience pain (especially if I have over done it) and suffer from a lot of headaches (I function on painkillers that would put most people to sleep). My immune system is rubbish and attacks the things that it shouldn’t (medication is its favourite and I have a long list of allergies) and parties with things that it should attack (I can correctly diagnose myself with most infections I go through phases of throat infections, stomach infections, chest infection and sinusitis), it takes me longer to get over everything and I often have to take antibiotics. I get tired and notice things more when I am tired such as the word confusion (its amazing how much energy it takes to hide it sometimes). I still have problems with my memory (the date of my wedding (and my husbands birthday) is on my wedding band – so that’s something I cant forget). I still suffer from depression and anxiety and the odd panic attack. Stress and bad infections tend to set me back, the severity of a set back depends on how quickly I recognise and admit it and learn those lessons of listening to my body again.

Putting it into context of the severity descriptions:

I was severe/very severe and moved to severe/moderate then onto moderate/mild

Where I am now – Mild with periods of moderate

M.E is not the only thing that I have (other things may have developed because of the M.E or were just there waiting to be discovered), but having M.E has made it harder for me to get properly diagnosed with other things as all to often symptoms can just be attrubuted to M.E, but I am lucky and have a very good and supportive doctor (the only aspect of moving that I dont like is finding another supportive doctor).

There is lots of information on the internet – just Google (net doctor / patient / NHS)

http://www.meassociation.org.uk/

Thank you for taking the time to read and to understand me and M.E a bit better