Person with ME


Although UK Government has now recognised the seriousness of ME, most people in Malta have never heard of this condition. Local doctors seem to be at a loss when people suffering from ME complain about its various symptoms with no explainable cause and no laboratory evidence to back them. Diagnosis of the condition itself is a huge feat.

I am a 29-year-old female Maltese sufferer.
The unpredictability of the condition is one of the most irritating things I have had to come to terms with and accept. Sometimes I wake up feeling better and can make a short trip to the grocer store on my own, or meet a friend for a coffee or even go out for a couple of hours in the evening. Other times, getting to cook is a sizable accomplishment. At times, I wake up feeling really exhausted and bruised as if I was hit by a bus. On those days, even walking to the bathroom takes a toll on me. Many times, I feel as if I am locked in a cage watching my life pass me by! Helpless anger is inevitable since I feel I cannot enjoy my youth. Then I feel guilty for feeling angry because I often bring it out on others and I know it's not their fault. It's like I got old before my time needing constant help from others but not wanting it at the same time!

I have good times and bad times within the restrictions of my condition. When I experience a high in my quality of life, I am likely to do as much as possible or fit in all the things I had once put my mind to. It's like when Lent is over and children gorge on Easter eggs and chocolate bunnies on Easter Sunday. Gorging on my supply of energy always results in a relapse of some kind. Unlike in the case of a healthy person, sleep does nothing for my fading energy. I hate to feel so dependent on others and it took some time for me to accept the situation.

It's very heart-breaking to have to let go of your plans because relapse comes knocking at your door. I was a very active, self-driven and ambitious person, before being struck by ME, so I constantly find myself in denial when faced with the reality that I have to put off doing most of the things I put my mind to. Drawing a line and knowing when you are overdoing it, is very difficult too. At the moment, I am practically housebound but I haven't always been like this, and I am confident that I will get better eventually and be able to do some part-time work that is not very taxing. Since an ME sufferer's immune system is very weak, catching infections and viruses is very easy and the recovery period is always prolonged. I have had to quit my job for the third time a few months ago, due to a stubborn virus that coupled with an ME relapse has resulted into severe malaise. It�s very demoralizing to have to leave work and very depressing to have to live like a recluse anxiously waiting to get better. It feels even worse when an ignorant and insensitive employer makes fun of your fatigue saying Then I must have ME too, because I am also constantly tired! Who wouldn't be tired after an 8 hour job and a few hours of overtime?

I have been suffering from M.E for the last 4 years, but have only been diagnosed with the condition in the last one and a half years. Being able to put a name to all I felt, has helped me cope better with the disease since I confirmed that it was not �all in the mind� and that if I managed to achieve or do less during the day it wasn't because I was being lazy but because my body was ill and needed rest. Since several visits to a range of specialist doctors in the first two years, didn't result in any diagnosis, I kept on pushing myself harder. The more I failed to live up to my expectations, the harder I tried. The unfortunate thing is that according to studies, people who are diagnosed at an early stage and given a period of enforced rest have the best prognosis.

A year after graduating from University as a teacher, I started to feel unusually tired, and complained of blurred vision and headaches. The swollen glands had led my doctor to check for glandular fever which resulted positive. Thanks to an understanding employer, I was able to extend my sick leave, and later on given a timetable that suited my energy levels. However around 7 months later, symptoms started to get worse. Although the eye specialist confirmed that nothing was wrong with my eyesight, blurred and double vision made me dizzy and I feared being alone because I constantly lost my balance. I developed low grade fever which would not go down with any medication and this made me feel constantly ill. Sleep was almost impossible and if I batted an eyelid, I would have nightmares and on waking up feel terribly bruised and irritated. My muscles and joints would ache and feel stiff. Severe indigestion and increased sensitivity to many foods, especially wheat, caused me to lose weight because I wasn't eating. I underwent an endoscopy and a colonoscopy to exclude the possibility of coeliac disease, which were two arduous procedures that brought on a relapse of their own. I also did an MRI (on the recommendation of a neuro-surgeon) because of the frequency of migraine attacks and the heightened sensitivity to light and noise; which was very unlike me, since I loved staying out in the sun and listening and singing to very loud music. I noticed that people started to tire me out and I started to shun away from company. The MRI results did not reveal any problems.

I then decided to go to a specialist on infectious diseases to see why my condition had got worse but he was left mystified by my complex of symptoms that were medically unexplainable. Since all my blood tests were fine and my vital signs were normal, I was advised to stop focusing on my symptoms and get on with my life. The specialist seemed to think that it had something to do with my state of mind and that eventually I would feel better. This encouraged me to go back to work and start the next scholastic year. This is when my life started to spiral out of control. It is imperative that ME sufferers listen to their body and give it the rest it needs. ME is not some form of mild depression that will go away with the help of a positive attitude to life. Ignoring it is always detrimental to getting better.

I felt terribly guilty to leave work, since I knew I would be a financial burden on my family. However due to physical and mental collapse and panic attacks, I was forced to leave this school after the first term. I felt as if the life went out of me but there was no evidence to back how I was feeling. At times I thought I was going mad. I experienced frequent panic attacks and was often breathless. Thank God for my sceptical mother who is not easily convinced. Following the lead of my loss of co-ordination, light-headedness and impaired vision, my mother booked an appointment with a neurologist.

After hearing my story, viewing my countless blood tests, x-rays, internal examinations and MRI results and a thorough examination, the neurologist immediately suspected that I was suffering from ME. He asked me to look up the internet and check if all my symptoms were recorded on an ME patient's list of complaints. Suddenly everything started to make sense and the relief was priceless. A visit to a sensitive and patient physician, confirmed the neurologist's diagnosis. I felt very relieved after a long period of worry and fear about what might be wrong. Most importantly of all, I could finally put a name to all I was feeling.

Thanks to both financial help and constant care from my family and a sensitive husband, I was able to change my lifestyle. My physician advised me to do a little bit of exercise each day and rest as much as possible. I was also prescribed a very small dose of a tricyclic-type drug that should have improved my sleep patterns due to its sedative properties. Lack of sleep was reducing my energy levels further. Unfortunately ME makes a person more sensitive to side effects and although I was prescribed the least dose possible and did indeed sleep like a log for the first month, I felt terribly numb, drowsy and depressed for the rest of the day. Therefore, after consulting my physician, I decided to discontinue my medication.

After 5 months I felt better and tried to go back to work, but two months later my well-being subsided and I had to quit once more due to a relapse. After 3 months of more rest and self-paced exercise, I was offered a part-time job in another school. With the help of my family who helped in as many ways as possible, I just managed to get through a year of teaching. I taught for one and a half hours a day and rested for the remainder of the day. Towards the end of May, my health began to deteriorate, however three months of rest followed and enabled me to try another year. The next year was tougher but I coped as best I could. Unfortunately at the end of my last year, due to an overtaxed and burdened immune system, I caught cytomegalovirus that affected both my liver and pancreas. People with ME are more susceptible to viral infections and due to the nature of the illness recovery takes time. Although the virus has gone, blood tests indicate that my pancreas is still unsettled. In turn, the virus was a major stressor for ME and a relapse has faithfully followed. I have had to quit work once again and spend most of my time indoors ticking the days in my diary like a prisoner in a cell.

Another distressing thing I face is loneliness. It is very easy to loose one�s network of friends and the possibility of making new ones. One day you're yourself enjoying nights out with your mates and planning to go places or do things together, suddenly you start to withdraw from their company. Due to the various symptoms, terrible exhaustion and overall discomfort, it's not the first time I have had to postpone meeting a friend or not been able to turn up to a party or an appointment. Friendships entail commitment. No one likes a person who constantly puts off meeting them. Such behaviour is easily misinterpreted as neglect. Socialising is seldom a luxury I can't afford! Since there is such lack of awareness, no exposure in the media and no public consciousness about ME, I find it very frustrating to have to continually explain myself. Even if some people understand and believe I have a real physical illness, I feel that people have a nagging belief that there may be a psychiatric component to it. Due to fear of being misunderstood, I feel that the less I explain my situation the better off I am. However, since I am either unemployed or a part-time worker, it's embarrassing not to have a "suitable" explanation for being off work. I hate to think that people might consider me a layabout or an idler. You have to have ME to even start to understand and appreciate the constant struggle sufferers face if not each day, most days.

By time however, I have learnt to work around my condition. If I know I have a night out planned, I can sometimes rest throughout most of the day then afford to go out for a few hours in the evening. At times, I find I have to pay afterwards for exerting myself. The sad thing is that the few times relatives and friends see me I am at my best, so it's easy for them to get the wrong idea and think that I am well or have recovered or even worse think that I have been shamming and pretending to be ill. Little would they know that I would have had to pay a price to store my energy. Sometimes I could participate in a heated argument related to politics or human rights, which are my speciality; but other times just listening to someone talk drains all the energy out of me.

Unfortunately a person who suffers from ME often experiences difficulties in concentration. Memory and thinking can turn foggy. Last week I went to deposit some money at the bank but when I came to sign the receipt, I forgot my signature. It was very embarrassing to have to pull out my ID card and recall how I usually sign my name. Most times I get extremely tired when trying to explain or understand concepts.

ME varies from person to person and it ranges from mild to severe. Those who are mildly affected manage to juggle work and rest. People with severe ME are bedridden and need 24 hour care. I feel I am somewhere in between the two extremes. However, since ME is an erratic condition of highs and lows, improvements and relapses, I feel I often get a taste of the various levels of ME. In Malta incapacity and disability benefits, and income support benefits are not available. The welfare state in Malta does not cater for ME sufferers. It is very difficult for those severe Maltese sufferers who are alone or who cannot get financial help or care from anyone in their community.

I had an active, enjoyable lifestyle before becoming ill and would like nothing more than to return to it. I find it very unfair that I am unable to keep my job due to my condition. I am a graduate who worked very hard to get my degree. I have brains and lots of potential. Why should I let it go to waste? Sometimes I imagine that my brain has become a rotting cabbage. Going to the Employment & Training Corporation (ETC) in Malta is useless because they only provide opportunities for full-time employment which the majority of ME sufferers cannot accept. The availability of jobs that suit the particular nature and needs of the condition are nonexistent. If a person is going through a terribly bad phase or a relapse, s/he needs an indeterminate time to recover and should be eligible to some kind of sickness benefit. Most sufferers who don�t have severe ME and who are unemployed, due to lack of suitable employment, lead very unfulfilling lives. However, this unjust situation is not only harmful to the individual struck by ME, but is also a great loss to the work force and society in general.

The tendency these days is to judge a person by how much they do and achieve rather than for who they are, so life is particularly difficult for people with ME. Whilst I will always welcome a cure ecstatically - It's not the first time and will not be the last time that I find myself aggressively trying to fight my illness away, desperately wanting my normal life back and envying other people who are well - accepting her life as a sick person for an undetermined length of time has opened new doors for me. Once I stopped grieving for the things I couldn't do, I could focus more on the things I could do and also got some insight into what my true aspirations are. Today, life is so hectic and demanding that most people never have the chance to listen to their inner selves and discover what they really want out of life and end up choosing a career they don�t really like or a path they later acknowledge was a huge mistake.

There are various support groups and associations across the UK that provide a support network for sufferers, their families/carers and friends. Unfortunately, there are no such groups in Malta, leaving ME sufferers to battle it alone. Although I am not in a position to start an ME association at present, I am trying to set up an email support group with the aim of sharing experiences and offering support.