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...
Tuesday, 16 April 2013
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)