If you have M.E, you've probably come across the well-meaning reassurances .. you know the ones: "Oh, M.E, my cousin has that!" or "Is that the same as M.S?" or "Oh, that... just feeling exhausted ... I have young kids and get that feeling all the time!" and the best one of all.. "Oh, my friend had that and changed her diet and stopped work for a year and is fine now!!". (My daughter gets "Oh it'll just be because she's going through puberty").
M.E. (myalgic encephalomyelitis) is a chronic debilitating autoimmune neurological illness, often triggered initially by a virus or overload on the body, which it never fully recovers from. People with M.E. suffer overwhelming fatigue, enough to make you nauseous 'sick to your bones' as I've sometimes described it. There is post-exertional malaise after any form of activity - whether it be physical exertion or exertion from interaction with others. Muscles often become painful or heavy, making walking difficult and a certain sense of paralysis. The fatigue can be too overwhelming to eat/digest meals, there is a heightened sensitivity to noise and light. Fatigue can also hit us cognitively which can interfere with the ability to work or go to school or to chat coherently with others. It is almost as though the messages refuse to go through to certain parts of the body. The inability to go out much or to carry on with normal activities can make us very isolated. It is like permanently living with glandular fever, and we have very unrefreshing sleep - you wake feeling as though you've been hit by a truck! There are different 'baseline' levels of M.E, and some people are able to function more than others, and continue with an element of working or social life, while others have had to stop work or schooling and often lose their friends and hobbies, sometimes even families and housing. It is a terribly soul-destroying and debilitating illness. Some are housebound, some bedbound, and some hospitalised and requiring tube feeding - living with M.E. can be like a living death. The illness may fluctuateand even if you have one 'good' day, many bad ones are likely to follow. Most of us have tried almost every diet or supplement or treatment known to man (and it's not helpful to hear of more 'cures', it becomes disheartening after a while)... as yet, there is no cure for M.E. Regular doctors often advise that the best we can do is 'manage the illness' through rest, pacing, painkillers, and sleeping pills.
Please do still ask us how we are! It's hard for us to answer, but it's nice to be asked. I like to hear what you and your family have been up to. It is hard to be able to guarantee that we can stick to plans, but it's nice to be included in them. My favourite way to be contacted is thru text or facebook, (since phonecalls are very draining), but it is lovely to stay in contact. I really value the friends over the years, who have in the past so kindly brought us a meal, texted, helped with organising the house, offered to drop the children to school etc when I have been unable to, and invited the children over to play. They are absolute gems. There have been times when I have been undergoing treatment (chelation for heavy metals etc) where I have barely been able to raise my head or have the energy to swallow. Friends at some of those times have been an absolute lifeline. I even had a friend in Vietnam offer to order us a pizza online. Bless her, what a wonderful wonderful gesture. I suffer from M.E, and now also have a mostly-housebound/sofa bound daughter who has M.E (there is a genetic pre-disposition) which makes things doubly complicated and yet more isolating as I am her full-time carer and struggle with M.E. myself. Over time, friends tend to drop off and family steps away, and that is where facebook becomes more valuable to us for social contact. Many people are very very isolated, even though they used to have busy and fulfilling lives, caring for family and friends. If you are a friend of someone with M.E, these are all very valuable, practical ways that you could help! Please don't be a stranger!
I hope this has helped give you a better understanding of M.E and its challenges? Please share with your friends if you find this helpful as an insider's view.
Do you suffer from M.E. yourself? Is there anything else you would add?
Love and blessings xxx
Any parent who cares for a child with a debilitating illness/condition is brilliant in my book but a parent who cares for a child with a chronic illness when they have one too is even more special. Well done I do have a friend who Has Elhers Danlos Syndrome (this is both Painful and debilitating), she also has a child with autism, global delay and ADHD, she has 2 other kids and she has her husbands child too. You are both fantastic Mummies because you have to deal with your own conditions as well as your children's and they require more care than your average child, plus everyday chores are made harder by our chronic pain conditions.
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