Thank you all for your kind messages. We are mostly better, sort of mostly. Still coughing, still terribly tired. Trying to get back to normal life, slowly, slowly.
Hello dear ones,
We’re back in the land of the living. The doctor prescribed a course of intensive steroids for Tony, and wow those things work fast. He stopped coughing within a few hours, was able to sleep, and woke up at 5am starving hungry and feeling loads better (he hadnt eaten since last Thursday, or drunk very much either). He felt well enough to take a quick look at our phone line, and was able to spot the problem with the wiring outside and fix it. You can’t imagine how happy I am!!! Internet back, Tony back. On the slightly minus side, I feel pretty sick myself now, and Tony is still far from well, so we’re just going to rest up for a few days. Definitely no update.
Thank you all for your kind messages, thank you Jane & Meg for passing along my frantic messages (and Sarah too, who was the carrier pigeon!). Even for just 24 hours I missed this place terribly.
Germy hugs from both of us.
Just making sure everyone sees this. Tony is really really ill, and so are our Posh employees. I’m trying to keep everything going by myself, but I’m a little sick too. I haven’t yet started packing last night’s parcels, I haven’t had time, but I will get them done in time for tomorrow’s post. I don’t think we will have a shop update ready by Sunday, but I will let you know here later in the week. I’m trying to keep up with emails & pms, but I’m struggling a little bit, so please be very patient.
Like so many others with a chronic health problem, every day of my life is a high wire balancing act. Without a net. On a bad day, I can do very little, and I fret about all the tasks piling up. On a good day, it’s almost impossible not to try to make up for lost time, and catch up on everything. And then I overdo it, and end up paying with a few more bad days. I have a lovely doctor, and he is always impressing upon me that this is the main struggle of ME/CFS. Working within your limits, every single day, instead of seesawing between forced inactivity and frantic catchups.
I have the added problem (again, as so many of you do) of having two conditions that often go hand in hand, but make different demands on my body. As well as the ME/CFS, I have fibromyalgia. If I do too much, physically, the ME flares. If I do too little, physically, the fibro flares. If I do too much emotionally, both flare. Stress is a major trigger, but it’s so difficult not to get stressed when you have a to-do list as long as your arm, and absolutely no strength or energy to do any of it. It’s also distressing and emotionally taxing (and therefore physically taxing) when people around you show ignorance or lack of compassion about your situation. I kind of got used to this when I was battling depression, but I’m having to get used to it all over again now that I have chronic physical illnesses. My goodness, people can be so thoughtless, so lacking in empathy or understanding.
But then, like mental health problems, ME/CFS doesn’t usually have any obvious physical symptoms, that people can look at you and see that you are sick. You usually look fine. If I’m in pain from the fibro, that may show a little more, especially when it flares up in my hips or ankles, and I can’t walk without limping. But for the most part, I look fine. And I can work, can’t I, so there can’t be too much wrong with me!! Yes, I can work, but that means I can do very little else. My doctor keeps urging me to give up work, but as long as I can manage it, I feel I must carry on. I want to carry on. But it means a lot of other things in my life are automatically excluded, because there’s nothing left for them. That’s the balancing act. I’m sure many of you have first hand experience of it.
But it’s not all bad. Far from it. Tony is wonderful, fiercely protective of me, and does everything he can to lift the load from my shoulders. This means that my restrictions often become his restrictions, but he’s very generous and kind, and doesn’t grumble. It hurts him as much as, perhaps more than, me, when people are ignorant and unsympathetic. But like me, he very much treasures the people in our life who are loving and supportive and empathetic. He is far better than I am at seeing my capabilities realistically, knowing when I can do something, noticing when I’m overdoing it. I’m very lucky to have him in my corner.
I want to send each one of you who are also coping with health problems – whether physical or mental – a very big hug today. And an extra one on the side to those of you who are caring for your unwell loved ones. Tony & I, we understand your struggles, we send you our love & sympathy. One day at a time. We can do this, one day at a time.
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.