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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.
Some friends had their first baby last week, and I’d promised them a quilt. We didn’t know if it was going to be a boy or girl (it’s a boy!), so I tried to choose fabrics that would work for both sexes. Forgive the dreadful photos, shooting quilts is definitely a skill that I need to work on! It really wasn’t anywhere near as ripply as it looks in the photos.
I did a simple random squares/rectangles for the front, which really showed off the fun fabrics.
Then the back had three wonky log cabin blocks, along the bottom edge.
I had the most fun with them – in fact, I did those before sewing the rest of the quilt. Then the quilt was finished with a simple meandering quilting stitch. I haven’t had a chance to give it to them yet, I hope they like it!
So, I did start a journal. I’m enjoying it, so far. Like Georgina commented, in the past any attempt at journalling has descended rapidly into a mopey depressing affair. So this time, I’m trying a different approach, a guided approach to journalling. I’m using the book Journalution, which has journal prompts intended to help self discovery and personal growth. I have a few more books in my wishlist, for when I’ve worked through this one:
- The New Diary: How To Use A Journal for Self-Guidance & Expanded Creativity
- Leaving a Trace: The Art of Transforming Life into Stories
- Journal to the Self: Twenty-Two Paths to Personal Growth
- A Year in the Life: Journalling for Self-discovery
Today’s journalling prompt was an interesting one:
Imagine yourself at 99 years of age. What do you want to tell the younger you?
That looks don’t matter. That you should never let fear hold you back. That you can’t please everyone (and you shouldn’t want to). That you should really treasure the people you love, and make the most of your time with them. That given enough time, the sting goes out of everything. That you are much stronger than you think. That everyone will let you down at some time or another, and that doesn’t necessarily make them a bad person. That you have to be true to yourself – or you’ll suffer tremendously.
What message would you tell your younger self?