So another year has passed since the last ME awareness day. For those fortunate enough to be uninitiated, ME stands for Myalgic Encephalomyelitis. It’s quite a mouthful but this wasn’t the reason why a name change was proposed earlier this year! The proposed change to SEID (Systemic exertional Intollerance Malaise) has been a hot topic within the ME community which I’m not going to indulge in here except to say that there is a strong, common desire to find a name that gives our illness/disease the recognition that it deserves and helps give clarity to onlookers. There are many unhelpful names that have also been attributed to our condition that I’m not even going to give print space to and the much loathed CFS (Chronic Fatigue Syndrome) only seems to muddy the waters further.
I feel it has been a positive year. It’s 20 months since my big relapse and I have improved from ‘moderate’ to the lower end of ‘mild’. I now get occasional days where I feel totally ME free, I can have many consecutive days where I feel no more than incredibly tired, but it’s not consistent and life is still far from normal. I’m still on a strict diet (gluten, sugar, stimulant free and low GI), and I take an arsenal of supplements. I’ve not returned to full time or voluntary work but I can now manage to study a full day a week; manage occasional chores around the house; finally progress with very basic exercise (1:1 Pilates). I can only achieve this by scheduling a strict activity/rest balance to my diary (including social time). And yet, despite being ultra careful, I still have unexplained periods where I crash and any of my old symptoms return: heart arrhythmia, shortness of breath, crushing brain fog and fatigue, throbbing, restless legs, weakness and shaky limbs, noise sensitivities that cause pain and increased fatigue, unexplained rashes & inflammation, sore throat and swollen glands, and disturbed sleep.
I’m writing this on the eve of the General Election. It’s the first year I’ve not been involved in a grueling campaign for almost 20 years. As a former MP’s wife, I know about being busy. As a mum, I know about being constantly on the go and being sleep deprived, and as myself I know about working full time, being energised from physical exercise and people, and from giving my time to my church and community. All of these things bring normal and understandable tiredness. I need to be clear that this fatigue is NOT anything like ME! It’s a shame I still feel I have to mention these to counter distorted beliefs that ME is a lifestyle choice and anyone who knows me would laugh at the suggestion that I was lazy!
I am one of the extremely lucky ones in the ME community, I have seen good improvement over a relatively short period of time (20 months!) To most people my illness is well hidden. I’m very happy about that, but it still sucks!
I’m extremely positive about my future. I have made a good recovery once before with this illness almost 20 years ago and I am determined to get back to fitness again but this doesn’t speed my recovery in any quicker. In fact, experience has proved to me time and time again that acceptance is what really aids recovery, not ambition.
Acceptance is a hard word when you desperately want your old life back. No one gets there the easy way. Everyone I know with ME has tried to battle their way through it before finally conceding to acceptance but it’s a hard, arduous road.
Accepting the limitations to what I can do and how I live my life is one thing but accepting how we are treated as a patient group is quite another.
Funding good quality biomedical research is still a huge challenge but it is vitally important to help gain positive media coverage, to pressurise governments and for GP’s to be better informed and equipped to offer help and not harm to patients.
People’s experience of the NHS varies significantly but there is a long way to go in re-building patient-Doctor trust. Many have chosen to ‘go it alone’ due to being disbelieved, or after receiving hurtful, ignorant comments from the medical community. Even well meaning GP’s have given out unintentional harmful advice on the basis of assumption rather than fact which has increased the severity of a patients condition. All too often I come across sufferers who feel they have had no option than to research and fund their own recovery. This comes at great financial, physical and emotional cost that not all can afford. So whether we change our name or not, I hope that the broad medical community will help to grant us acceptance, and support us in finding a cure to this isolating, frustrating, disabling, devastating and in extreme cases, fatal condition.