Following a series of bugs I was diagnosed with post-viral fatigue syndrome. Managing with two youngsters is very difficult, but it is hard to let them down. I feel they are missing out on so much and I am desperately sorry I'm not a better mother for them, but what can I do?
To be diagnosed with post viral fatigue (PVFS), chronic fatigue syndrome or ME, an adult must have severe chronic fatigue for at least four months with no other medical condition identified as the cause.
They must also have one or more of the following symptoms:
Substantial impairment in short-term memory or concentration
Tender lymph nodes
Multi-joint pain without swelling or redness
Headaches of a new type, pattern or severity
Post-exertional malaise lasting more than 24 hours
Other symptoms that may occur include:
Dry eyes or mouth
Psychological problems, such as depression, irritability, anxiety, panic attacks
Shortness of breath
In general, the symptoms aren't improved by bed rest and may be worsened by physical or mental activity.
Since it's not known what causes PVFS it's difficult to prevent. There's no evidence to support the view that PVFS is a contagious disease and there's no precise identified cause.
It's believed that a person's genes may make them
more susceptible, and that viral infection, stress, depression, or a major life event (for example bereavement or job loss)
may act as triggers for
PVFS in susceptible individuals. There's no specific treatment for CFS. However, medicines can be prescribed to relieve the symptoms.
Yorkshire batsman Joe Sayers has been diagnosed with Post-Viral Fatigue Syndrome (PVFS) – a condition linked with chronic fatigue syndrome (CFS) and ME. The illness left him so tired he could barely walk
up a flight of stairs
He has been forced to put his international cricketing career on hold while he recovers from the condition which he believes was
caused following a cold.
He says that he is starting to recover and is trying to use the experience positively.
Paul Charlson, GP from Brough
Many post viral fatigue syndrome sufferers feel that they're fighting two battles: One is fighting the illness itself.
The other is fighting to prove that what they are suffering from is real. There is a prevailing feeling that you just need to "pick yourself up" and the guilt you feel in being unable to do so is huge.
Try not to be too hard on yourself, it would be a good idea to obtain some information on your condition from a reliable source that both you and your husband can read and learn from together, this would give you both a better understanding of how to move forward and manage your condition.
Behaviour therapy, physiotherapy, occupational therapy, counselling, relaxation therapy, and graded exercise may help. Reducing stress, eating a healthy diet, rest periods, pacing and support groups also help many people with post-viral fatigue syndrome.
Elaine Douglas, A chartered psychologist who specialises in family and child relationships
This condition can be totally debilitating, producing a whole range of symptoms and from my research it would seem that this is a condition that can go on for some time – but that ultimately people do recover. From reading your letter I felt the condition was secondary to the effect that you feel this is having on your family and your children in particular. So, it would seem that we need to look at all of this in two ways – firstly how you can manage your symptoms and condition as effectively as possible, and secondly how you are going to work round your physical problems so that your children's needs are met? You need to pace yourself and give yourself permission to rest. I suspect that you don't do this and this is why you "pay for it" when you do too much. There are a couple of websites that you might find those useful to help you get better.
At the moment you cannot do as much as you used to, so the bottom line is that this is something you have to accept. Once you've done that you need to look at ways in which your children can get involved in activities etc – but without you being there all the time.
Cary Cooper, Professor of Organisational Psychology and Health at Lancaster University
I know how you feel. I had post viral fatigue syndrome over 20 years ago now, when the doctors didn't know what it was except "perhaps a viral illness". I was laid up for nearly two years, finding myself falling asleep in the late afternoon at work. It is a very debilitating illness, which needs sustained rest. The medics know more about it now and although, as I understand, there is no immediate cure, they know that rigorous exercise and activity is not the way to go. I tried to overcome it by pushing myself physically, which made it worse and delayed my recovery. I was worried that it was something more serious, so I went to a consultant who reassured me that I would recover, but it would take time and I had to rest often and be patient. Take the advice of your GP, they know more about it these days. There is a great deal of information about this condition online so access it. You could share this with your husband, which might help him understand.
Dr Carol Burniston, Consultant Clinical Child Psychologist
It must be very frustrating for you to be in this situation. The key to recovery seems to be pacing yourself.
You will need to be organised and make sure that you rest when you are able, such as when the children are at school. It is also helpful to take a graded approach to exercise, to build up the strength you have lost over the course of your illness.
Our expectations of ourselves can be too high and I wonder if your fears about your children missing out are as a result of their comments or your own anxieties? Provided that the children's basic needs are met, they can entertain themselves and your husband can help. Again, doing a little and often with rest in between is the key to success.
There are lots of ways you can spend quality time with your children which are low-energy, such as reading to them, colouring, or playing board games.