Not even sure how I have calmly moved through this week, well I am assuming I have stayed mostly calm that is!
We have had a week of contrasting weather, the beginning being Foggy really really foggy ( can't see the houses other side of the street foggy!) and very icey under foot, but ice you can't see, it was rather scary to be honest we don't live far from school, not really a 5 minute walk for me ( quick pace) but trying to move up a hill.. with ice you can't see lead to sliding back down the hill!! and it wasn't just my fat bum trying and struggling to move up it! All i could think of was the time my step dad slipped on ice and badly dislocated his knee! kids are well versed in the be careful because remember grandad! three days we had of this! thankfully I never slipped once! little man did though bless never seen so many bruises on his knees! ( and there are normally quite a lot!)
I am rather glad the fog had lifted and now this weekend it seems to have warmed up a little, I was getting rather fed up of being so cold even with the heating on and needed brews to keep my reynaulds at bay!
Poor madam has been struggling alot with severe constipation again, we have a few instances of bad stretches but this was getting to the rediculous standards again! gave in and went to the doctors on Thursday ( as we know how much i love going up there!!) and she was put back on movicol and we were told by the doctor to just completely give up on the wheat, yes in the past we've been told to take it out, but the allergist said she needed to build up her tolerance of it, not that she gave any guidance!! so we had been having spits and spats of wheat, and you would know of too much. This makes this so much harder meal planning, lunch planning, treat planning. She needs to be nut free, wheat free and corn/ maize, the last being as we had noticed it gives her severe cramps if she has the latter! not that this has ever been confirmed however we did discuss this with the doctor and she said I am the best person for this matter knowing whats right and wrong. ( hell... why don't they listen like that over her bloody joints). So the hard part.. getting movicol into the fussy 9 yr old! took some experimenting, and found with summer berry juice and through a straw works! small things but aslong as she is able to have her meds i suppose we can't complain.
Now.. apart from the obvious carrot cucumber etc snacks. 9 yr olds rather like treats, especially if they have been used to them. Suddenly saying sorry you can't have xyz leads to chaos and upset. but trying to find all this free snacks that at least resembles a treat is seriously bloody hard! what did we end up with yesterday? rice cakes.. she won't have rice cakes forever and i have told her that she is going to have to broaden her horizons in what she eats! ( as we are going to have to ) She got upset because we had something and she couldn't. Now I don't do this with nuts, but i'm not taking the family completely off wheat because she has to so the world was against her yesterday and apparently not part of the family any more... I did say i had a 9 yr old and not a teenager right?
Sigh
She has had a rough week though, we had some lovely new child in her class who thought it might be fun to taunt and tease her one lunch time, they had asked her to open something for them, she saw the ingredients and said no i'm allergic ( may contain nuts) yes i know she isn't eating it but its her comfort zone after all so she said no. Child managed to open it themselves but then decided to shove it into madams face! and ignored the fact she asked them to stop and that she could react they said they didn't believe she had allergies. She went and told a teacher when she was finished and i have to say thankfully it was dealt in a swift manner and child was put into the hub, a place where those naughty etc go to if needed, this was for a short time. I would have preferred if the teacher had pulled me aside and told me of the incident instead of madam on the way home starting " Mummy don't worry this has been dealt with but...." We had to have a serious conversation and i am sure many of my mummy friends don't have to talk about something potentially killing their child at 8 o'clock at night. (myself and madam have a chat at bedtime) Children shouldn't have to think of this reality or even think that a peer was trying to hurt them in this way! not that the child prob knew any better but still. In a previous blog post I had mentioned other incidents friends have told me about children wanting to find out allergy reactions from those with allergies, I suppose it is the mild curiosity but to us it is scary and I am hoping it is a isolated incident!
I am glad it is the weekend, so some sort of chill time can be reached, next weekend we are having a treat for the little mans birthday who turns the big 5!!!! my baby is 5.. we are going to London so he can go and find the Rocket (Stephensons) since he has a small obsession with trains atm! and to go and look about other museums whilst there. seems to be a theme for his birthdays since we live down here! his 3rd birthday we went to the natural history museum! Hoping for a slightly calmer week!!
Sunday, 29 January 2017
Saturday, 14 January 2017
The cute and the not so cute Invisible illness
Shock, I know I don't post so close together any more with my blog posts but just been thinking over some things, things that have been said and even things that are not said. ( Other people have conversations in their head right? ;) )
I was pondering over some of the things I say to my eldest, when sometimes I completely forget some of the issues she has. I know that makes me sound like a horrible parent but lets go into my shoes for a moment. I have a 9 yr old girl, anyone that has dealt with girls knows they seem to hit their tweens before they are even tweenagers! sometimes it is hard to remember that she is only 9!! and only really just 9 since her birthday was in October. Her issues apart from her eczema and any allergic reactions and any swelling are completely out of sight, out of sight out of mind is the saying right?
So.. when she can't hear what i'm saying even though i'm stood right behind her? for some brief times I go mad especially if i feel she is ignoring me, It takes a while to realise hold on she does have an issue with her left ear, it means if she is concentrating on something else, tv, minecraft etc etc then she might not hear me or hear me clearly. Sometimes she has to say Mum I can't hear you! Not sure if this is related to her hypermobility, it was never decided what was wrong with her hearing it was just .. something, something that won't go away. Not severe but enough to sometimes cause issues and it does wax and wane with severity. ( blame allergies there for possible glue ear on top) It is easy to forget there is an issue especially since she has no hearing aid or anything. Also come on which 9 yr old doesn't sometimes want to ignore their parent? they are in that tricky phase.. or is it just mine ? :-p
Realised these last few days again I was being a little harsh on her, every morning esp with the lights on she is struggling to open her eyes, I wasn't very nice thought she was just milking it a bit not wanting to possibly do anything just getting up grumpy etc.. when it dawned one me, the muscles in her eyes are not working as they should! whoops.. no wonder she is struggling as her eyes are not adjusting. ( as optician said, her eyes are not adjusting as quick as they should when she takes off her glasses etc so still blurry) takes quite a while until she is able to adjust and its taking her to need her glasses more. Possibly thinking of one of those wake up lights that make it more natural way to wake up? and she wants a clock in her room so really will kill two birds with one stone!
You have to really balance yourself as a parent in this situation, you have alot of factors to consider, especially when she is in "pain" you have to take everything on face value sometimes quite literally, you can tell when madam is in pain, her face shows it all, especially how tired she is, not that she will say she is tired, when do children ever admit to being tired? the dark rings are a dead give away! but since there is nothing visible sometimes I feel the mean parent, due to not being able to do much sometimes its well, tough! I have given meds, I have done cuddles and heat pack and sometimes i have to go away, that.. is horrible, i was never one for cry it out and can't stand listening to my children crying as because as it should it cuts through me! especially when in pain! this is where i wish i had someone i could message, call, ask, is this "our normal?" I have support groups I am on, but they don't always have the answers or things get distracted and we end up talking about something or someone else, which yeah is fine, but doesn't always help the original poster! I have to also realise that madam.. does not want to miss school, she loves school and learning, miss brain box. It's when i feel mean for sending her in struggling but i know whilst there she is learning but distracted as well, most of the time!
I know the title of the post suggests cute! .. i suppose the cute is when i forget things, or the little quirks we have. She stated last week about a fairly new bed and mattress, I hate my bed it doesn't let me sleep......, No love... your bed is not to blame its your body not getting comfortable! silly and its better then the last mattress.
I have to say though she had a really bad back last week and beginning of this week, but you can tell she has gotten better, why? she is laughing and joking and being silly. something she hadn't been, as of course she was in a lot of pain. These are the things I have to take away the good days, the happy laughing moments. The moments she loves my cooking ( safe dessert anyone!? ) and just moments we can laugh together which i want to do more.
There is a lot of learning as a parent, and even more as a parent trying to help a child with chronic pain and problems, I know we are fortunate she is very clever and she does have good days, very grateful and these are things I need to remember when having the down moments, the frustrating days, the days we can't do anything to help.
Just think.. not everyone has things that show on the skin, there are alot of invisible illnesses, some people have good and bad days, and they can be the same DAY!! you can get up fine and go to bed a mess, I have seen it, witnessed it and lived it. 20 mins into a walk a ankle might go and thats it you are buggered. We need more compassion and understanding in the world especially with the times ahead. So just some thoughts if someone seems "fine" to you, doesn't necessarily mean they are.
I was pondering over some of the things I say to my eldest, when sometimes I completely forget some of the issues she has. I know that makes me sound like a horrible parent but lets go into my shoes for a moment. I have a 9 yr old girl, anyone that has dealt with girls knows they seem to hit their tweens before they are even tweenagers! sometimes it is hard to remember that she is only 9!! and only really just 9 since her birthday was in October. Her issues apart from her eczema and any allergic reactions and any swelling are completely out of sight, out of sight out of mind is the saying right?
So.. when she can't hear what i'm saying even though i'm stood right behind her? for some brief times I go mad especially if i feel she is ignoring me, It takes a while to realise hold on she does have an issue with her left ear, it means if she is concentrating on something else, tv, minecraft etc etc then she might not hear me or hear me clearly. Sometimes she has to say Mum I can't hear you! Not sure if this is related to her hypermobility, it was never decided what was wrong with her hearing it was just .. something, something that won't go away. Not severe but enough to sometimes cause issues and it does wax and wane with severity. ( blame allergies there for possible glue ear on top) It is easy to forget there is an issue especially since she has no hearing aid or anything. Also come on which 9 yr old doesn't sometimes want to ignore their parent? they are in that tricky phase.. or is it just mine ? :-p
Realised these last few days again I was being a little harsh on her, every morning esp with the lights on she is struggling to open her eyes, I wasn't very nice thought she was just milking it a bit not wanting to possibly do anything just getting up grumpy etc.. when it dawned one me, the muscles in her eyes are not working as they should! whoops.. no wonder she is struggling as her eyes are not adjusting. ( as optician said, her eyes are not adjusting as quick as they should when she takes off her glasses etc so still blurry) takes quite a while until she is able to adjust and its taking her to need her glasses more. Possibly thinking of one of those wake up lights that make it more natural way to wake up? and she wants a clock in her room so really will kill two birds with one stone!
You have to really balance yourself as a parent in this situation, you have alot of factors to consider, especially when she is in "pain" you have to take everything on face value sometimes quite literally, you can tell when madam is in pain, her face shows it all, especially how tired she is, not that she will say she is tired, when do children ever admit to being tired? the dark rings are a dead give away! but since there is nothing visible sometimes I feel the mean parent, due to not being able to do much sometimes its well, tough! I have given meds, I have done cuddles and heat pack and sometimes i have to go away, that.. is horrible, i was never one for cry it out and can't stand listening to my children crying as because as it should it cuts through me! especially when in pain! this is where i wish i had someone i could message, call, ask, is this "our normal?" I have support groups I am on, but they don't always have the answers or things get distracted and we end up talking about something or someone else, which yeah is fine, but doesn't always help the original poster! I have to also realise that madam.. does not want to miss school, she loves school and learning, miss brain box. It's when i feel mean for sending her in struggling but i know whilst there she is learning but distracted as well, most of the time!
I know the title of the post suggests cute! .. i suppose the cute is when i forget things, or the little quirks we have. She stated last week about a fairly new bed and mattress, I hate my bed it doesn't let me sleep......, No love... your bed is not to blame its your body not getting comfortable! silly and its better then the last mattress.
I have to say though she had a really bad back last week and beginning of this week, but you can tell she has gotten better, why? she is laughing and joking and being silly. something she hadn't been, as of course she was in a lot of pain. These are the things I have to take away the good days, the happy laughing moments. The moments she loves my cooking ( safe dessert anyone!? ) and just moments we can laugh together which i want to do more.
There is a lot of learning as a parent, and even more as a parent trying to help a child with chronic pain and problems, I know we are fortunate she is very clever and she does have good days, very grateful and these are things I need to remember when having the down moments, the frustrating days, the days we can't do anything to help.
Just think.. not everyone has things that show on the skin, there are alot of invisible illnesses, some people have good and bad days, and they can be the same DAY!! you can get up fine and go to bed a mess, I have seen it, witnessed it and lived it. 20 mins into a walk a ankle might go and thats it you are buggered. We need more compassion and understanding in the world especially with the times ahead. So just some thoughts if someone seems "fine" to you, doesn't necessarily mean they are.
Sunday, 8 January 2017
Happy new year! Hello 2017
Hello 2017! ( nearly put 2007 then lol my times have changed since then!) we are a week into the year! children and hubby have already been back to school for some of the week and I suppose life is getting back to normal after christmas, depending on what you might call normal!
The house still looks like a rubbish/ toy/ food bomb has gone off! not helped by the fact every time we go out to shop, be it top up, food shop in general or a wander we are finding bargains! (whoops) though the freezer is full.. the cupboards are full which is nice, we don't have to worry about food for the time being which is always good! all i have to do is think of meal plans! We visited a wholesale yesterday which does food after their best before dates, some are a couple weeks others are years! though as you should know, best before is merely a guideline and really the food is not going to kill you! Safe to say we have enough cereal for a while! (even enough to bake with whoo!). We have bought enough Christmas things in the sale to make next Christmas look like a wonderland! ( poundland 25p items! lol ) and have already bought a couple of presents.. ( i know i know) but for a change it feels like and prepared!
After all we have no idea what this year brings, madams dla is up for renewal and as much as her health isn't in a good place I am not confident it will get renewed. Trying not to dwell too much on that score as it is later in the year and alot can change between now and then! but atm she is not in a good way. Before christmas her back was hurting and it has starting hurting again, all the way down her spine and the muscle on either side and seems she has some swelling at the bottom. Just what we need she is feeling very off side and very grouchy! which is completely understandable but it makes being a parent very hard to deal with! she is not a teenager we shouldn't have to deal with this kind of strops yet. I miss my happy smiley girl! As atm it is just one thing after another and it is alot to cope with.
Speaking of health. I have been discharged by the counsellor, as we concluded after 2 apps and in third that my depression is not solid depression but a cumulative effect of everything I am trying to cope with. I have a very supportive and loving hubby and family even if we are not close in terms of miles we have a good relationship ( aslong as we don't discuss the dark side!! ) and I have friends i can connect with or who drag me for coffee ;) not that i am complaining! I feel I am "ok" and the counsellor is writing a letter to the doctors to express that the right course is to make sure madam has a main consultant who can over view everything! instead of us having to nit and pick with so many different people who can't help with other bits! Fingers crossed when I go to the drs they will be accommodating.
In the mean time we are currently looking at ideas for holiday places in France! as we need something to look forward to and we are dying to go back again! and sooner we book the sooner we can save money for it and potentially do more. Though last years chilling out was very nice!
As well as organising family visits! Think this year will be just as busy as the last!
More adventures!!
The house still looks like a rubbish/ toy/ food bomb has gone off! not helped by the fact every time we go out to shop, be it top up, food shop in general or a wander we are finding bargains! (whoops) though the freezer is full.. the cupboards are full which is nice, we don't have to worry about food for the time being which is always good! all i have to do is think of meal plans! We visited a wholesale yesterday which does food after their best before dates, some are a couple weeks others are years! though as you should know, best before is merely a guideline and really the food is not going to kill you! Safe to say we have enough cereal for a while! (even enough to bake with whoo!). We have bought enough Christmas things in the sale to make next Christmas look like a wonderland! ( poundland 25p items! lol ) and have already bought a couple of presents.. ( i know i know) but for a change it feels like and prepared!
After all we have no idea what this year brings, madams dla is up for renewal and as much as her health isn't in a good place I am not confident it will get renewed. Trying not to dwell too much on that score as it is later in the year and alot can change between now and then! but atm she is not in a good way. Before christmas her back was hurting and it has starting hurting again, all the way down her spine and the muscle on either side and seems she has some swelling at the bottom. Just what we need she is feeling very off side and very grouchy! which is completely understandable but it makes being a parent very hard to deal with! she is not a teenager we shouldn't have to deal with this kind of strops yet. I miss my happy smiley girl! As atm it is just one thing after another and it is alot to cope with.
Speaking of health. I have been discharged by the counsellor, as we concluded after 2 apps and in third that my depression is not solid depression but a cumulative effect of everything I am trying to cope with. I have a very supportive and loving hubby and family even if we are not close in terms of miles we have a good relationship ( aslong as we don't discuss the dark side!! ) and I have friends i can connect with or who drag me for coffee ;) not that i am complaining! I feel I am "ok" and the counsellor is writing a letter to the doctors to express that the right course is to make sure madam has a main consultant who can over view everything! instead of us having to nit and pick with so many different people who can't help with other bits! Fingers crossed when I go to the drs they will be accommodating.
In the mean time we are currently looking at ideas for holiday places in France! as we need something to look forward to and we are dying to go back again! and sooner we book the sooner we can save money for it and potentially do more. Though last years chilling out was very nice!
As well as organising family visits! Think this year will be just as busy as the last!
More adventures!!
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