What is M.E anyway??

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

Built-in best friends!

I love the love and laughter in our house... faith, love and a sense of humour are some of the most important family values in our house, it really keeps us going.  I snapped this giggling time last night while eating dinner, my girls snuggled up together in their onesies on the sofa, totally cracking each other up lol ....  they are so lucky to have each other, we are forever counting our blessings.  Built-in besties :).  #lotsofbeautifulfamilymoments

Life with wheels..

I haven't blogged recently, I haven't really felt I've had much to share. Things have sort of been spiraling downwards for Miss M.E. (11) and it's often hard to talk about. 

In the weekend, however, there was an occurrence that made my blood boil. (Gotta love an infuriated mother blogger, right?).  I'm sure many of you who struggle with mobility will have had a similar thing happen......  Miss M.E. (11) had mustered all her energy and decided that she would try to go out of the house, for the first time in weeks, to one of her favourite shops in her 'prior-M.E' life. I loaded up her wheelchair, and we headed to the mall where her favourite teenage clothing shop was. The seasons and fashions had changed since she was last there, and there was lots of new stock. But do you think she could fit her wheelchair down the aisles without hooking clothing off the racks accidentally? Not a chance. The items were all mounted the whole height of the walls, and predominantly inaccessible. Each aisle would require backing out of as we would hit a stand loaded with clothing jutting out across the paths. People were everywhere, but no one offering to help - poor Miss M.E. (11) was awfully embarrassed.... I showed her a pretty top and suggested she tried it on before we left, so that at least she had found something - but after waiting for a long time in the queue for the changing rooms, it turned out there was someone (able-bodied) in the disabled changing room.... she had to reverse her wheelchair out of the queue and line herself up to the side to wait... It all became too much, she was absolutely shattered and begged for us to leave. We left empty handed and thoroughly discouraged.

I stopped off at one of the cafes in the mall and asked if they did anything dairy and gluten-free... nope, she couldn't even eat. Finally made it outside where I was able to buy her some caramelized nuts for her efforts, which she had gratefully. She arrived home aching and in pain, her legs throbbing from being in the wheelchair, and collapsed into bed exhausted.

I imagine it will be a very long time before she ventures out to the shops again.....

If she is well enough in the future, perhaps I will encourage her to write a letter to the store....