Thursday, 26 December 2013
Thursday, 7 November 2013
Just another Friday...
Another Friday has been and gone in Miss M.E (12)'s world. Another day too ill for even the half-hour visit from her home tutor who comes twice a week. Children with chronic debilitating illnesses have a lot to ponder. They do not have the activity and excitement of healthy children, the distractions of school, and depending of the nature of the illness (e.g. M.E), the ability to walk around the block or to ring a friend for a chat.
Lately it has been playing on Miss M.E (12)'s mind about what is ahead for her in her future. It is nearing the end of the school year here, and it's been a year when she has done the equivalent of about five full days of school. She spent a whole term getting dressed in her school uniform, and the energy required for that along with a shower the night before (or that day) was enough to debilitate her too much from attending school. This is no basic fatigue. This is bonecrushing, nauseating, head-spinning, brain-fogging, co-ordination and speech-effecting, fatigue that is constantly there but hits even worse out of the blue from time to time. It is hard to watch a child hurting herself constantly doing the most basic activities like walking through a door, never being able to find the right words to hold a conversation, and frequently unable to finish her sentences.. or follow her own train of thought... her brain just gives up. She is mostly housebound, and any outing no matter how small is considered a huge achievement - but comes with payback of days of increased illness afterwards. Her world is very, very small. This is the child who a couple of years ago had already been showing the early signs of M.E (there is a genetic pre-disposition if a parent also has it), but who was still able to do one hour of hip-hop a week which she loved dearly, able to visit friends or go to the movies if she felt well enough, and was mostly attending school full-time which she also thoroughly enjoyed. She excelled in all her subjects and was always rated as a friendly and compassionate class member.
Today she asks if she will ever be well. If she will ever be able to go away on holiday again (car-trips exhaust her). She is looking forward to the Christmas holidays because she won't have 'the stress' of feeling she should be at school - even though she has not really been at school all year.... She doesn't talk of Christmas... the stress and adrenalin of Christmas is not necessarily a good thing for those struggling with M.E. We will be making it as low-key as possible, while still trying to make it seem somewhat festive and special to her....
Yet Miss M.E. (12) is by no means alone, nor is she one of the most severely-affected child/teen/young adult. Many are unable to eat and have feeding tubes, unable to stand the stimulation of light or sound so remain constantly in a darkened room with limited interaction, nauseous at every slight movement and in awful bone-aching pain for huge lengths of time on end.
Today I am reminded of Karina Hansen, a young Danish woman ... who is today spending her 25th birthday in a Danish hospital, held against the will of her and her parents... She has been kept there 8 months, forced to do treatments that are detrimental to her ongoing health, with archaic believe systems around M.E as a psychiatric illness... when there is strong medical evidence that it is a neurological auto-immune disorder. My heart breaks for her and her family and the dreadful ordeals they have been through and are continuing to go through. Best wishes and birthday blessings can be sent to her via this facebook page: https://www.facebook.com/JusticeForKarinaHansenand messages to add your support to her and her family. I encourage you all strongly to join the page. A more complete explanation can be found there, and also ways to donate towards M.E. research, for a better future.
Sending you all much love and blessings
xxoxx The M.E. Mum
Lately it has been playing on Miss M.E (12)'s mind about what is ahead for her in her future. It is nearing the end of the school year here, and it's been a year when she has done the equivalent of about five full days of school. She spent a whole term getting dressed in her school uniform, and the energy required for that along with a shower the night before (or that day) was enough to debilitate her too much from attending school. This is no basic fatigue. This is bonecrushing, nauseating, head-spinning, brain-fogging, co-ordination and speech-effecting, fatigue that is constantly there but hits even worse out of the blue from time to time. It is hard to watch a child hurting herself constantly doing the most basic activities like walking through a door, never being able to find the right words to hold a conversation, and frequently unable to finish her sentences.. or follow her own train of thought... her brain just gives up. She is mostly housebound, and any outing no matter how small is considered a huge achievement - but comes with payback of days of increased illness afterwards. Her world is very, very small. This is the child who a couple of years ago had already been showing the early signs of M.E (there is a genetic pre-disposition if a parent also has it), but who was still able to do one hour of hip-hop a week which she loved dearly, able to visit friends or go to the movies if she felt well enough, and was mostly attending school full-time which she also thoroughly enjoyed. She excelled in all her subjects and was always rated as a friendly and compassionate class member.
Today she asks if she will ever be well. If she will ever be able to go away on holiday again (car-trips exhaust her). She is looking forward to the Christmas holidays because she won't have 'the stress' of feeling she should be at school - even though she has not really been at school all year.... She doesn't talk of Christmas... the stress and adrenalin of Christmas is not necessarily a good thing for those struggling with M.E. We will be making it as low-key as possible, while still trying to make it seem somewhat festive and special to her....
Yet Miss M.E. (12) is by no means alone, nor is she one of the most severely-affected child/teen/young adult. Many are unable to eat and have feeding tubes, unable to stand the stimulation of light or sound so remain constantly in a darkened room with limited interaction, nauseous at every slight movement and in awful bone-aching pain for huge lengths of time on end.
Today I am reminded of Karina Hansen, a young Danish woman ... who is today spending her 25th birthday in a Danish hospital, held against the will of her and her parents... She has been kept there 8 months, forced to do treatments that are detrimental to her ongoing health, with archaic believe systems around M.E as a psychiatric illness... when there is strong medical evidence that it is a neurological auto-immune disorder. My heart breaks for her and her family and the dreadful ordeals they have been through and are continuing to go through. Best wishes and birthday blessings can be sent to her via this facebook page: https://www.facebook.com/JusticeForKarinaHansenand messages to add your support to her and her family. I encourage you all strongly to join the page. A more complete explanation can be found there, and also ways to donate towards M.E. research, for a better future.
Sending you all much love and blessings
xxoxx The M.E. Mum
Monday, 30 September 2013
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
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
Wednesday, 25 September 2013
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
Monday, 23 September 2013
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....
Sunday, 2 June 2013
The silver lining
Today was a good day!! A really good day! It does my heart good.
I was unable to get up until about midday, and Miss M.E. was up but not at 'em... but I decided to hitch up a 'treat' for her with my hubby for an hour in the afternoon - a wee trip to a quiet arcade, where they could play slot machines, try to claw up some prizes, race each other on stationary motorbikes. It's not something we would normally do, which made it all the more fun. We kept it all very hush-hush prior ... and she was very anxious to know what her surprise might be! It had been months since she has been well enough to go out with friends etc (or even well enough for school) and it is hard to find a suitable activity that doesn't require any strength or energy but provides a change of scenery from being housebound.
They had a fabulous time.
When she came back from the spacies arcade she was full of information about the tickets, the Sponge Bob soft toy they had won (and the strategy used), the airhockey game they had played together.
They were gone for approx an hour, and she has been resting since, I'm hoping the post-exertional malaise (PEM) won't hit too badly.
So pleased to have found something to suit her :). A wee glimmer of light for her to be able to feast off for the next few weeks :). Nothing is ever simple with M.E - it's all about strategy and pacing........... and hoping for the best.........
Do you have any fun hobbies/outings that you like to do when you feel well enough? Any energy-saving ideas or treat outings? xxxx
I was unable to get up until about midday, and Miss M.E. was up but not at 'em... but I decided to hitch up a 'treat' for her with my hubby for an hour in the afternoon - a wee trip to a quiet arcade, where they could play slot machines, try to claw up some prizes, race each other on stationary motorbikes. It's not something we would normally do, which made it all the more fun. We kept it all very hush-hush prior ... and she was very anxious to know what her surprise might be! It had been months since she has been well enough to go out with friends etc (or even well enough for school) and it is hard to find a suitable activity that doesn't require any strength or energy but provides a change of scenery from being housebound.
They had a fabulous time.
When she came back from the spacies arcade she was full of information about the tickets, the Sponge Bob soft toy they had won (and the strategy used), the airhockey game they had played together.
They were gone for approx an hour, and she has been resting since, I'm hoping the post-exertional malaise (PEM) won't hit too badly.
So pleased to have found something to suit her :). A wee glimmer of light for her to be able to feast off for the next few weeks :). Nothing is ever simple with M.E - it's all about strategy and pacing........... and hoping for the best.........
Do you have any fun hobbies/outings that you like to do when you feel well enough? Any energy-saving ideas or treat outings? xxxx
Friday, 24 May 2013
M.E Awareness Month
One day I would love to see my daughter skip, jump on the trampoline, do hip-hop, play with friends, be excited about going out, hear her laugh, have her bright and full of life, doing craft and having hobbies, pain free and attending school. Just doing things that kids do. Bit by bit my heart is breaking for her... My hope is, that one day there will be a cure.. and I truly believe there will be. Hopefully sooner rather than later. May = M.E Awareness month
Tuesday, 16 April 2013
And then there was camp
It is now Wednesday night, nearly a full week since we returned from Miss R's Year 7 school camp... "a once in a lifetime opportunity" as she put it.
We only stayed one night... but that was enough. She is currently only managing 1.5hrs of school per day. The school was wonderful about arranging a cabin for her and I to crash in, and we made full use of it. She was unable to participate in any of the 11 scheduled camp activities, even though she did try.... and we have both been recovering ever since. Pain, insomnia, muscles spasming and cramping, overwhelming fatigue..... and she has been unable to return to school so far. Still hoping she will manage to recover and that this will not be her new baseline...
We only stayed one night... but that was enough. She is currently only managing 1.5hrs of school per day. The school was wonderful about arranging a cabin for her and I to crash in, and we made full use of it. She was unable to participate in any of the 11 scheduled camp activities, even though she did try.... and we have both been recovering ever since. Pain, insomnia, muscles spasming and cramping, overwhelming fatigue..... and she has been unable to return to school so far. Still hoping she will manage to recover and that this will not be her new baseline...
Monday, 15 April 2013
Boston......
Today marked the day of the Boston bombing...... so terribly sad and very very scary..... the people of Boston are very much in my thoughts and prayers xxxxxx
Sunday, 14 April 2013
Schooling and M.E...
Today both my children are home sick from school... and it strikes me that society sees that a very important part of a mother's role (aside from feeding, nurturing, loving etc), is to ensure that her children get to school. Every day. That they abide by school rules regarding attendance etc. That they get a good education - the BEST education available. That they can thrive and do well and ultimately go on to further learning and fulfill their potential to get a good job. This is what is imprinted into us from the minute we start school - that there is a responsibility to attend, and more importantly, to achieve.
M.E. spins a whole new spectrum on this. When I was particularly ill with M.E. myself, my children would be dressed in their uniform, yet I would on occasion struggle to be able to get up, unable to walk or get dressed, unable drive them to school.... so they would end up aimlessly at home, in their uniforms, while I was stuck sick in bed. Oh the guilt. I had a list of snacks on the fridge that they could help themselves to if I was unable to prepare dinner... they were young, it shouldn't have to be that way, but it was survival tactics necessary at the time. Mostly I was able to arrange carpooling to get them to school, but not always. I felt like the worst mother ever. Until we moved house, closer to the school.
The hospital physio had come and visited and gave me a zimmerframe, and the hospital OT had come and told me we would need to move house, when I told her how much I struggled with the stairs (my hubby was needing to fireman-lift me upstairs to bed most evenings for a patch).
So we moved house. Never an easy feat with M.E, and we have had far too many shifts in recent years.
But back to the topic of schooling. Now, Miss R has M.E. She is unable to "just walk to school" anymore, even though it is now only a couple of blocks away, and her M.E. is such that she is only able to attend school for 80mins per day - between morning interval and lunchtime. It completely drains her and she is often unable to recall what she has done that day. She has difficulty eating lunch and needs a long time to unwind. She is merely getting a tiny taste of school life.. two of the days are Biotech (currently making soap), and another is current events. I worry that she is missing so much in her education. When will she ever be well? When will the nightmare of M.E ever leave, and to what depths will it go? Where is the point to push through, and when is it necessary to retreat to avoid an irreversible crash??
As a parent, it is very hard to convince ourselves that it is 'ok' for her to be missing so much of her schooling. She is conscientious and loves school, loves being there for the 80mins each day when she can make it. She has a wonderful hospital tutor who comes for two hours a week. Yet cognitive difficulties are starting to show - she forgets easily, she forgets what she is saying mid-sentence, she bumps into things, she loses things, she will manage to struggle through a page of reading but have no recollection of what she has just read, she pulls muscles in her neck and back all the time from just 'being', and struggles with car rides, having showers or baths, and sleep. After any activity, it takes a long time for her to recover, and for a child who LOVED hiphop and netball, she is now unable to do any sport. When she is out, she pushes through the best she can with her invisible illness... and once home she crashes.... and suffers.
She is an unwell child, and sadly, full education will just have to wait...
As a carer it is hard to rationalise that she is currently too sick for much school and too sick for home schooling. So hard. So hard for her too, naturally. She has no extra 'space' for additional thinking at home much. We do jigsaws and play hangman or scrabble on occasion, but she is rarely able to manage much more than that even though we have tried.. So important that she is able to keep up the social contact, yet mostly she feels too ill to have friends over, even for a short time. I'm thankful that currently her friends keep in touch, and technology in this instance is a real blessing.
A note from her school friend made my heart melt:
You are such a wonderful friend, and I don't know what I would do without you! (Signed by the child's name, with her surname crossed out, and "Beiber" in it's place).......
What are your thoughts on chronic illness and education? How have you handled it? xx MUM
M.E. spins a whole new spectrum on this. When I was particularly ill with M.E. myself, my children would be dressed in their uniform, yet I would on occasion struggle to be able to get up, unable to walk or get dressed, unable drive them to school.... so they would end up aimlessly at home, in their uniforms, while I was stuck sick in bed. Oh the guilt. I had a list of snacks on the fridge that they could help themselves to if I was unable to prepare dinner... they were young, it shouldn't have to be that way, but it was survival tactics necessary at the time. Mostly I was able to arrange carpooling to get them to school, but not always. I felt like the worst mother ever. Until we moved house, closer to the school.
The hospital physio had come and visited and gave me a zimmerframe, and the hospital OT had come and told me we would need to move house, when I told her how much I struggled with the stairs (my hubby was needing to fireman-lift me upstairs to bed most evenings for a patch).
So we moved house. Never an easy feat with M.E, and we have had far too many shifts in recent years.
But back to the topic of schooling. Now, Miss R has M.E. She is unable to "just walk to school" anymore, even though it is now only a couple of blocks away, and her M.E. is such that she is only able to attend school for 80mins per day - between morning interval and lunchtime. It completely drains her and she is often unable to recall what she has done that day. She has difficulty eating lunch and needs a long time to unwind. She is merely getting a tiny taste of school life.. two of the days are Biotech (currently making soap), and another is current events. I worry that she is missing so much in her education. When will she ever be well? When will the nightmare of M.E ever leave, and to what depths will it go? Where is the point to push through, and when is it necessary to retreat to avoid an irreversible crash??
As a parent, it is very hard to convince ourselves that it is 'ok' for her to be missing so much of her schooling. She is conscientious and loves school, loves being there for the 80mins each day when she can make it. She has a wonderful hospital tutor who comes for two hours a week. Yet cognitive difficulties are starting to show - she forgets easily, she forgets what she is saying mid-sentence, she bumps into things, she loses things, she will manage to struggle through a page of reading but have no recollection of what she has just read, she pulls muscles in her neck and back all the time from just 'being', and struggles with car rides, having showers or baths, and sleep. After any activity, it takes a long time for her to recover, and for a child who LOVED hiphop and netball, she is now unable to do any sport. When she is out, she pushes through the best she can with her invisible illness... and once home she crashes.... and suffers.
She is an unwell child, and sadly, full education will just have to wait...
As a carer it is hard to rationalise that she is currently too sick for much school and too sick for home schooling. So hard. So hard for her too, naturally. She has no extra 'space' for additional thinking at home much. We do jigsaws and play hangman or scrabble on occasion, but she is rarely able to manage much more than that even though we have tried.. So important that she is able to keep up the social contact, yet mostly she feels too ill to have friends over, even for a short time. I'm thankful that currently her friends keep in touch, and technology in this instance is a real blessing.
A note from her school friend made my heart melt:
You are such a wonderful friend, and I don't know what I would do without you! (Signed by the child's name, with her surname crossed out, and "Beiber" in it's place).......
What are your thoughts on chronic illness and education? How have you handled it? xx MUM
Sleeeeeeeep.....
... and like a thief in the dark, I am robbed yet again of sleep, and at 3.30am left lying in the dark worrying about how I will function tomorrow for the kids, and how to rid myself of the pain... bummer!
Do you have any sleep strategies once you have woken in the night in pain?
Do you have any sleep strategies once you have woken in the night in pain?
Welcome to me, The M.E. Mum....
Welcome to me and my blog!
I am the M.E. Mum... with a school-aged M.E. daughter, Miss R. This blog will aim to share some of our daily life/joys/struggles as I navigate my way through living with the sapping invisible illness, M.E. (Myalgic Encephalomyelitis , also sometimes known as C.F.S), while also caring for my daughter who also suffers from M.E.
Never fear, this will not be a super-heavy blog about 'cures' and regimes as I am certainly no doctor or therapist... and to date there is no cure for M.E.... however I do plan to touch on things that are relevant to our family life currently as we try to make sense of our world. I will include things that appeal to me; things that make me laugh, things that make me reflect and things that work (or don't work) for us.
I hope it will give you some insight into living with an invisible illness, or perhaps give you things to connect with if you are also dealing with M.E. or other invisible illnesses in your life. I hope you will feel at home here and feel free to comment or join in!!
On occasion I will use jokes/pictures etc sourced from the internet, so if you feel I have breached copyright please message me and I will take it down.
Wishing you all well in your world.
Squeezy hugs from me...
MUM xxx
I am the M.E. Mum... with a school-aged M.E. daughter, Miss R. This blog will aim to share some of our daily life/joys/struggles as I navigate my way through living with the sapping invisible illness, M.E. (Myalgic Encephalomyelitis , also sometimes known as C.F.S), while also caring for my daughter who also suffers from M.E.
Never fear, this will not be a super-heavy blog about 'cures' and regimes as I am certainly no doctor or therapist... and to date there is no cure for M.E.... however I do plan to touch on things that are relevant to our family life currently as we try to make sense of our world. I will include things that appeal to me; things that make me laugh, things that make me reflect and things that work (or don't work) for us.
I hope it will give you some insight into living with an invisible illness, or perhaps give you things to connect with if you are also dealing with M.E. or other invisible illnesses in your life. I hope you will feel at home here and feel free to comment or join in!!
On occasion I will use jokes/pictures etc sourced from the internet, so if you feel I have breached copyright please message me and I will take it down.
Wishing you all well in your world.
Squeezy hugs from me...
MUM xxx
Subscribe to:
Posts (Atom)