I'd be ill in bed for weeks, then feel better. I'd then rush around trying to catch up with the shopping, laundry and housework that I hadn't been able to do, and I'd get sick again. My brother said it looked like a clockwork toy running down. I had not made the connection between activity and illness. I thought whatever bug I had only allowed a brief window of opportunity to get things done before it struck again. At times I was too weak to turn myself over in bed. My teenagers music caused me great distress but I was too weak to ask them to turn it down. I couldn't bear light, noise or smells, and I couldn't understand what people were saying to me. It would take a couple of minutes to work out what the words "would you like some tea?" meant when they were all strung together. Then I wouldn't know what to say because I was thirsty but not strong enough to hold the mug, and if I did I'd have to go to the toilet and it seemed impossibly far from my bedroom. Talking took too much out of me.
Eventually I was well enough to sit in a reclining chair for up to half an hour at a time. I graduated to a wheelchair and was able to be taken out for short periods. Then I got an electric mobility scooter which helped enormously. I have been very well for several months and was starting to wonder if it was in remission, but for a couple of weeks now my health has been 'down' and I have a sore throat, headache, pain, swollen glands, nausea, mild fever and feel very weak. I'm only managing to do the essentials. I'm seeing Sean this evening, so I had extra rest yesterday and today, and I'm hoping for the best.
I do my grocery shopping at night when the store isn't crowded. My hairdresser cuts my hair at home. I pace activity and rest, ie I'll do something then rest. Do something else, then rest. In that way I get a reasonable amount done. This "reasonable amount" includes talking on the phone or seeing dear friends and family. They are wonderful, but too much knocks the stuffing out of me and leaves less energy available for other stuff such as brushing the teeth. Its now 14h40 and I've been resting to gather strength to have a bath. After I have it, I will get dressed then rest until 17h40 when I will prepare to see Sean. I'll also be taking pain and nausea pills before I even think about going out of the door. I'll have to be careful this evening because I need to save some energy for Teresa Jayne's birthday tomorrow.
What does having ME feel like?
For me, its like having 'flu (not a cold, with 'flu symptoms of sore throat, sore body, swollen glands, mild fever, jelly legs) combined with having run a marathon I didn't train for and the grandaddy of all toxic hangovers. Nausea is a big problem, as is muscle and joint pain, which is particularly bad on the left side of the body. Dizziness. Mental fuzziness.
I hope these few paragraphs give you some idea of living with moderate M.E. I'll draw a line below and copy some info from the ME Association:
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ME Association clickable Link
The typical features of ME/CFS
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.
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.
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