M.E Sufferers Malta News List

Danica's story

We are Chris and Carmen, parents of Danica, a 15yr old teenager. Until 5 years ago, our daughter was very healthy and strong. Indeed she could even jump from a story high building and feel nothing. She was extremely active.

After coming from school, one day in September, Danica felt unusually very tired. We took her to our GP who told us that she had caught glandular fever; the symptoms lasted for about a month. Although she was still very weak, Danica went back to school after a few weeks.

Since we were still very concerned about her health, we spoke to our GP, who referred us to a rheumatologist. Since then she took many blood tests, locally and abroad. She also did a CT scan, an MRI, a Nerve Test and took a special injection bought from Holland that cost 32lm. She was also given steroids and was kept in hospital twice for a whole week for observation.

We changed specialist doctors five times for second opinions. We tried to keep sending her to school, but her form teacher constantly called to take her home since she couldn’t cope with all the lessons. Danica was too tired to stay on for the whole day.

We decided to find a tutor and home-school our daughter; and for the last 2 years she has been having 2 lessons a day. During this last year, she has been going to a physiotherapist and psychologist (2 to 3 times a week) and to psychiatrist every 3 months, at St. Luke’s Hospital.

Sometimes she looks as normal as any other teenager her age, but at other times she feels and looks weak again. May God help her and all our friends who are suffering from this condition. Regards to all and good luck.

Nicola's story

My Experience of Living With M.E.

Welcome to the other world! So many of us lead ordinary, safe, unremarkable lives, with a feeling of security, a feeling that generally things are OK. Then, suddenly, it’s not O.K. Suddenly we find ourselves in a different world, a world where there is no security, there are no guarantees, where there is no fairness or justice, where things are just wrong – wrong for whatever reason, incurable illness, war, horrendous injustice, frequent accidents, corruption that kills; a place where many of us are, or feel, powerless against greater forces: the forces of evil and greed and corruption or just mere indifference that poison our society; a place where we lose our feelings of security or faith.

Much, indeed most of my life is lived on that comfortable level, that world of safety and security where things are mostly O.K. But now I live partly in that other half-world, a world in which I’m just one step down on a long slippery ladder, and below me are many millions of others whose lives are far, far worse than mine. I still have some comforts, and food, and basic security – even as I rail against the unfairness and injustice, and I voice my anger against the corrupt and lazy (or just overworked) doctors, the corrupt and greedy insurance companies, the others who just don’t care because it doesn’t affect them… even as I feel all of this, in this other half-world, I also know that there are many millions of others who live with this anger and resentment, those who live with horrendous injustice every single moment of their lives.

Knowing this, I have to have renewed respect for those who can rise above it, those who carry on, and especially those who manage to grow and shed their anger and move above it. We are all born different, and there are some who are going to do less well – health-wise and emotionally as well as career-wise and financially. It’s just luck, mostly: what set of genes and what set of circumstances you are born with or into.

For those of us with a chronic, and chronically misunderstood illness, our experience is one of overwhelming frustration. I became ill almost two years ago with vague symptoms: inability to concentrate, slight dizziness, no tolerance of noise, fuzziness in my head (brain fog), and overwhelming fatigue by the end of the working day. I failed to recognise these as symptoms of illness, assuming they were caused by stress. My supervisor obviously felt I was not pulling my weight at work (a demanding project management position overseas) and just over a year ago I lost my job. I took time off to travel and rest before planning to look for another job. Six months later my symptoms and fatigue were much worse and I knew something was seriously wrong. I was eventually diagnosed with ME/CFS.

At first I was delighted to have a name to my problem. But then the frustration began – there is an abundance of confusion and misinformation about what myalgic encephalomyelitis (ME) is, and what it is not: chronic fatigue syndrome. Many people (and doctors) see these conditions as being the same thing; many other doctors (and people) see them as separate and different.

My only goal in life right now is to recover from this illness, and every day I prioritise activities which may (or may not) help me to recover. I am frequently dizzy and my head is full of cotton wool; some days I cannot leave the sofa; on good days I can barely walk for more than 15 or 20 minutes (I used to walk for hours!); I have no social life; I watch no TV. Doctors provide no clues, there is no magic cure, and I constantly search the internet for advice and information. Frustration abounds as I wade through pages and pages of misinformation and garbage miracle cures. I am left with basics: rest and quiet, daily meditation practice; daily yoga practice at a manageable level; a healthy diet that is protein rich and low in carbohydrates; lymphatic drainage massage as frequently as I can afford it. And I focus on all the things I am grateful for – that I can live close to the sea, that I have some savings, that I have a supportive family, that I am still well enough (just!) to live alone and take care of myself, that I have supportive and helpful friends, and the generosity of the women who gave me a discount so I can afford the massage treatments!

Faye's story

I’ve been living with M.E for the past 4 years and was house-bound with glandular fever a year before that. Before I was struck by this illness, I was incredibly energetic, always had a steady job, worked hard and loved my social life.

While spending a year and a half working abroad, from early 2001, I was really happy, in a relationship, had a good job, and travelled places (which is my favourite thing to do). However I started getting ‘the flu’ often, and my energy levels started to deteriorate quickly and I never seemed to feel quite well again. Every time I’d see a doctor he would send me off with antibiotics but I still felt ill after a course, and never could get my energy levels up again.

In time, my bosses used to send me home early as they noticed my energy levels were not what they used to be. After a few months I decided to come back home to Malta where in a few weeks a specialist told me I had glandular fever. I spend a year house-bound, back at my parent’s house. It was truly a nightmare.

When I started to improve, I got a part-time job as didn’t feel strong enough to jump back into 8 hours a day but I balanced rest and work which was a great relief. However, after about 2 months I started feeling ill again. The moment I felt weak and didn’t rest immediately I fell vulgarly ill and started missing a lot of work again. Of course due to this I got incredibly depressed and I was referred to a psychiatrist as I was told that my weakness was due to depression. The psychiatrist, after speaking to me for a whole 5 minutes quickly prescribed anti-depressants. The months that followed were awful as I had a 9 week relapse and couldn’t get out of bed. I took another course of antibiotics although I hadn’t taken them in years, and still got no better. I felt so misunderstood and alone. Due to the anti-depressants it was hard to express how low I was feeling and my depression soon turned to suicidal thoughts. I just didn’t want to live like this anymore.

Thankfully I turned to a homeopath who slowly helped me get off the anti-depressants. Slowly with the help of natural medicines my mood but more importantly, my physical state started to improve again. She thought me how to listen to my body and rest when I needed to. At the same time, I was also introduced to a very good viral specialist who finally told me I had M.E/CFS and he also explained to me how important it was to balance my day between rest and activity. He didn’t prescribe any drugs and just took his time making me understand the constraints of the illness. He was the first doctor I had been to, on the island, who didn’t make me feel like a crazy person and I am eternally grateful to him.

Since then, I have found incredible support from my homeopath who listens to my symptoms on a daily basis, and when things go wrong she gives me homeopathic medicine to ease any pain or discomfort. It certainly has not been a cure to M.E but it has been a great help to my overall health and wellbeing.

The last 2 or so years, I worked with a family company who gave me a pity job where I could answer telephones 2 hours a day. There wasn’t 1 week were I was well enough to go in from Monday to Friday but I tried when I could. Now I have stopped working altogether as they just couldn’t afford to keep me on.

My current reality remains the constant pain in my body, sore throat and swollen glands whenever I haven’t rested, not to mention the overall weakness and persistent insomnia. On good days, I try do some yoga or walking but for no longer then 30minutes, if that. And by lunchtime I need to be in bed again.

It would be great if I had a crystal ball to know which my good days are going to be. If I overdo it, don’t rest when my body demands, then I spend weeks in bed with flu symptoms and aches that don’t seem to ease for weeks.

Besides my father, and the friends I have made who actually have M.E, I feel no one understands what I’m going through and I feel alone. As a single person, the desire to date is overshadowed by guilt, shame and embarrassment. Guilt that I would be a burden on someone else and embarrassed as it seems no matter how one explains this illness, no one can fully comprehend the suffering that everyday brings. And although out of the kindness of people’s hearts, we are duty bound to say things like ‘maghndek xejn’ (u have nothing), or people think we are somehow lazy as we don’t go to the gym, then I would rather just be alone.

I hope that this site becomes a refuge for current and new sufferers of the illness. We all will keep trying different therapies to recover fully. I hope to write a more positive account about recovery in the near future.

Rebecca's story

I am a 29-year-old female Maltese sufferer.

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.