27.06.12

I’ve been dithering about posting this, but hey, I share everything else with you, and we’re all friends here, so here we go.

Like so many of you, I struggle with my health. Well, you already know that. I’m not talking about depression here, although that always plays a part. The last few months have been particularly tough, and I’ve been going through a slew of tests to find out what’s going on. Yesterday I saw a lovely doctor, and he diagnosed M.E. I shouldn’t be surprised, really, I was diagnosed with Chronic Fatigue Syndrome about six years ago – but I did eventually recover, so I thought perhaps this was something else, my thyroid again, perhaps. But no, it’s M.E. The doctor I saw expressed the opinion that M.E. & CFS are slightly different variants, and he felt that my symptoms were more symptomatic of M.E. than CFS (opinions on this subject vary from doctor to doctor, and country to country, with some saying that M.E. and CFS are the same thing, and others stating that they are definitely different).

I phoned my mother and told her, and she immediately asked, what is M.E. and I was embarrassed to admit, I don’t know, so I went away and did a little research. This is from the M.E. Association website.

It should be explained that there are a number of different names for what is an illness of uncertain cause affecting many thousands of people. Currently it is estimated that some 250,000 people in Britain are affected by this illness.

  •  Myalgic Encephalopathy or “ME” (a term which The ME Association feels is more appropriate than the original, Myalgic Encephalomyelitis)
  • Chronic Fatigue Syndrome or “CFS”
  • Post-Viral Fatigue Syndrome or “PVFS”
  • Chronic Fatigue Immune Dysfunction Syndrome or “CFIDS”

All types of people at all ages are affected. Severe and debilitating fatigue, painful muscles and joints, disordered sleep, gastric disturbances, poor memory and concentration are commonplace. In many cases, onset is linked to a viral infection. Other triggers may include an operation or an accident, although some people experience a slow, insidious onset.

Most people with ME/CFS fall into one of four groups:

  • Those who manage to return to completely normal health, even though this may take a considerable period of time. The percentage falling into this category is fairly small.
  • The majority, who tend to follow a fluctuating pattern with both good and bad periods of health. Relapses or exacerbations are often precipitated by infections, operations, temperature extremes or stressful events.
  • A significant minority, who remain severely affected and may require a great deal of practical and social support.
  • A few, who show continued deterioration, which is unusual in ME/CFS. When this occurs, a detailed medical assessment is advisable to rule out other possible diagnoses.

Commonly, a previously fit and active person finds their illness triggered by an infection. Less common triggers include toxins, organophosphate pesticides, vaccinations, major trauma or stress (e.g. a road traffic accident), pregnancy and surgical operations. In some cases there is no obvious precipitating event and the person reports a gradual decline in health over a period of months or even years.

The predominant symptom of ME/CFS is usually severe fatigue and malaise following mental or physical activity. The full extent of this exhaustion often becomes apparent only 24 to 48 hours after the activity (assuming, of course, the person was not already in a ‘recovery period’ from a previous activity).

The other main symptoms are:

  • Muscle symptoms include exercise intolerance and post-exertional malaise (i.e. feeling shattered the day after undue physical activity), pain/myalgia (present in around 75% of people) and fasciculations (visible twitching of the muscles which sometimes includes blepharospasm/eyelid twitching).
  • Brain and Central Nervous System symptoms include cognitive dysfunction (problems with short-term memory, concentration and maintaining attention), clumsiness, disequilibrium likened to ‘walking on rubber’, and word finding abilities. Problems with control of the autonomic nervous system results in palpitations, sweating episodes and symptoms associated with low blood pressure/postural hypotension (e.g. fainting).
  • Symptoms which suggest on-going abnormalities in immune system function include sore throats, enlarged glands, joint pains, headaches, problems with temperature control and intermittent flu-like feelings.
  • Other symptoms which frequently occur in ME/CFS include sleep disturbances (often increased requirements at the onset followed by an inability to maintain a full night’s sleep), alcohol intolerance (a very characteristic feature, particularly in the early period of illness) and irritable bowel symptomatology.
  • Some people also develop emotional lability or mood swings and features of clinical depression as time goes on.
  • Besides these more obvious and wide-spread symptoms there are also myriad “minor” ones. Not everyone experiences all of them and often they are not mentioned when patients describe their illness; however there is often very visible relief when they find others, too, have similar experiences.

ME/CFS symptoms tend to fluctuate in severity throughout the course of a day and people often report that they have both ‘good days’ and ‘bad days’, although the term ‘good’ is often used in a relative sense. The illness nearly always results in a severe reduction in a person’s ability to cope with all aspects of normal daily living (i.e. social and sporting activities, employment, household tasks). Relapses or exacerbations are often precipitated by infections, excessive physical or mental stress, general anaesthetics and surgical operations, and extremes of temperature.

There are currently limits as to what can be done medically; antidepressants can help, which I’m already on, and painkillers have a limited effect on the pain that accompanies M.E.. Otherwise it’s a matter of knowing your limitations and trying to stay within them, and not attempting to make up for lost time when you are feeling well.

I can’t tell you what a relief it is to know what is wrong, to be taken seriously by a doctor, to be treated with such kindness and empathy (he really was lovely), to have a diagnosis. It’s dreadful when you feel ill so much of the time, but you don’t know why. Once you know what’s wrong, you can deal with it.

I am in a very fortunate position, in so many ways. For one thing, and this is a BIG thing, Tony is fantastic with me. He never pushes me, is one of the most caring, kind people I know, and is endlessly patient and loving. For another, I’m so lucky to have Posh Yarn. I don’t have to struggle with going out to a workplace, I can fit my work around how I’m feeling, and a lot of my tasks can be done in bed (where I am right now!). I have two good employees who take a lot of the workload off me. And, of course, I have such splendid customers, who are patient with occasional delays, and always so kind and understanding. Finally, I have a lovely home, in a very quiet village. This is a big thing for me – I get so easily stressed and overwhelmed, and I need a peaceful home to retreat to.

I have so much to be grateful for. I’m constantly humbled by the stories of my customers, how much each one of you have to struggle with, your courage in the face of your challenges (most of which put my smaller struggles very much into proportion). And despite that, you all are so sympathetic and supportive to me, and I can’t tell you how much that means to me. I’m sending a big hug to each one of you today.

N.B. This post has been updated with more accurate information (I hope!) from the M.E. Association website. I do apologise to any of my lovely readers who suffer with this illness, who may have been upset or irritated by the original post.

12 thoughts on “27.06.12

  1. I’m sad to hear you’ve been diagnosed with something almost uncurable, although I am happy to hear you have an answer to help you understand. I’d also like you to read back through some of this from my friend Mary. http://batsgirl.blogspot.co.uk/ She’s a knitter and used to live near me, we still keep in touch but she lives too far away now for me to see more than about once a year. She’s going through the same thing but also doing home PA business work. I’m sure she has some insight that might help you understand. xxx

  2. I’m glad you did decide to share! And I’m also glad you got your diagnosis! I have recently had one that explains a lot of unwellness, but I’m not brave enough to come out with it so applaud you on that. I hope now you know, you can look to improving your health. Hugs.
    Sue x

  3. Hello Dee!

    I am glad and sorry at the same time! Glad that you finally have a diagnosis and can now deal with your illness accordingly. Sad to hear that you are so ill in the first place!

    Lots of hugs and good wishes!!!

    Bettina

  4. You mst be so relieved to get a diagnosis and from a sympathetic doctor.I think when you have a handle to put on symptoms it is so much easier to cope.You are lucky to have Tony.he sounds a real treasure.Enjoy what you can do but don’t feel you have to push yourself.Thinking about you Dee

  5. Dee, that sounds bad, but I’m glad that having a diagnosis and a great doctor is making things easier for you to handle. I agree that knowing what’s going on makes a positive difference. Hugs & as always, thanks for sharing so freely.

  6. I’m sorry to hear the news but glad that you are open and in a positive place with it. Having a name to put to all you’ve been experiencing must be a relief and it sounds like you’ve got yourself a good doctor too, all the better. It’s wonderful to hear that Posh is a comfort and not a stress and I personally read that as an inspiration – if only more people were willing to risk making their work lives fit them!

  7. Oh, Dee–Sending a hug right back to you! I am so glad you found a doctor that listened and had a diagnosis. Finding a good doctor is such a challenge.

    I must admit, with you all being self-employed, I found myself wondering if you had health insurance. Oops, forgot your system was just a bit different than ours in the US.

    Sending warm fuzzies and hugs, Kelly