Help please

[Leadinglights]

Thanks for this. Any advice is so welcome. I am quite confident with the fodmap but have never moved past the first level so am already pretty much doing a basic salad/veg/fish/chicken diet which is why I'm confused as to my levels being high as it would almost seem that I was already doing a lot of the recommended diet

That is so weird, I had never heard of FODMAP and within minutes of seeing your post, on another forum I go on somebody mentioned it.

 

[Suzanne1]

That is so weird, I had never heard of FODMAP and within minutes of seeing your post, on another forum I go on somebody mentioned it.

I had never heard of it before and was put on it as a bit of a last resort but really helped with my IBS! Never moved past the basic level though.

 

[Drummer]

Hi I have recently been diagnosed with type 2 and do not have a clue what I am doing! I already have to be on the fodmap diet for ibs and so am pretty much low or no carbs and little to no sugar?
I have read up, am eating what is recommended and have been checking my blood. I have never tested below 10 and that was when I tested after not having eaten for 15 hours. In the morning before I have had anything I am already at a 12/13 and am regularly getting readings of 26 in the day, two hours after food.
I have disabled children, who sleep very little and need constant supervision so I know Im already not getting enough sleep, am stressed, have no appetite so struggle to eat regularly as it just feels a chore.
Any help would be massively appreciated.
Thanks

As you are getting so little sleep - you should ask for help so that you can continue to look after the children - if you collapse what would happen then? Maybe put it to the HCPs you see on Friday that you need a few hours respite a couple of times a week to look after yourself. Maybe on top of that someone to come and assist at peak times on a daily basis.
If you are told that there is no help just keep reminding people what you have to do, and that you can't cope at certain times of the day.

 

[Suzanne1]

As you are getting so little sleep - you should ask for help so that you can continue to look after the children - if you collapse what would happen then? Maybe put it to the HCPs you see on Friday that you need a few hours respite a couple of times a week to look after yourself. Maybe on top of that someone to come and assist at peak times on a daily basis.
If you are told that there is no help just keep reminding people what you have to do, and that you can't cope at certain times of the day.

Thank you. Unfortunately respite wouldn't be for us as my little boy particularly has PTSD from being restrained by others and has terrible anxiety about leaving me. It wouldn't give me any rest as he would literally have to be restrained to even leave me. I appreciate your thought, we have managed for 8 years and I know I have a lot longer in me I just need to get this a bit under control so I feel a little better
My husband was recently diagnosed with cancer and so the children are already going through a lot
It's also so very hard to get respite, even if it shouldn't be, and you have to fight very hard. At the moment I don't feel it's a fight worth having as I don't think it would help but I do see where you are coming from. Thanks

 

[Drummer]

Thank you. Unfortunately respite wouldn't be for us as my little boy particularly has PTSD from being restrained by others and has terrible anxiety about leaving me. It wouldn't give me any rest as he would literally have to be restrained to even leave me. I appreciate your thought, we have managed for 8 years and I know I have a lot longer in me I just need to get this a bit under control so I feel a little better
My husband was recently diagnosed with cancer and so the children are already going through a lot
It's also so very hard to get respite, even if it shouldn't be, and you have to fight very hard. At the moment I don't feel it's a fight worth having as I don't think it would help but I do see where you are coming from. Thanks

Ah - that bad.
I would urge you not to soldier on - as it keeps you off the radar - even if you can only have someone visit you for something which might seem trivial to do with housework it would be a start as they would then make reports on your situation - which might seem invasive but could work to your advantage in the long term.
Let me put it this way - if you let things continue as they are now, then things will not get any better in any way whatsoever, they can only get worse as you become more stressed and worn down by every day being more than one person can cope with.

 

[Suzanne1]

Ah - that bad.
I would urge you not to soldier on - as it keeps you off the radar - even if you can only have someone visit you for something which might seem trivial to do with housework it would be a start as they would then make reports on your situation - which might seem invasive but could work to your advantage in the long term.
Let me put it this way - if you let things continue as they are now, then things will not get any better in any way whatsoever, they can only get worse as you become more stressed and worn down by every day being more than one person can cope with.

Thank again and I know that you are talking sense. It's very tough as it would definitely get worse before it had any postiive outcome and I have no energy to do the tough bit at the moment which of course becomes a vicious circle. My brother in law came round to help with a bit of wood in our shed and my little boy was so distressed that he barricaded all the doors and tried to attack people with tools. So not many people would come and visit as that is how bad it is when he knows and likes them. It is something I mull over and the sleep consultant did tell us that it is something we should request, knowing that we will be turned down, but so that we are on the radar for if we do need it in the future. It's tough when it would make his life and his siblings harder in the short term

 

[Leadinglights]

Thank again and I know that you are talking sense. It's very tough as it would definitely get worse before it had any postiive outcome and I have no energy to do the tough bit at the moment which of course becomes a vicious circle. My brother in law came round to help with a bit of wood in our shed and my little boy was so distressed that he barricaded all the doors and tried to attack people with tools. So not many people would come and visit as that is how bad it is when he knows and likes them. It is something I mull over and the sleep consultant did tell us that it is something we should request, knowing that we will be turned down, but so that we are on the radar for if we do need it in the future. It's tough when it would make his life and his siblings harder in the short term

I don't know how old your little boy is but I agree with what @Drummer say about trying to get some help. It is a different kettle of fish dealing with a small child with the issues your son has but once he is older it is not so easy to manage especially if he becomes violent. If a relationship can be established with a regular carer for even a few hours a week and may help you all in the long run rather than it only being something when there is a crisis.
It is hard to think that others can help but they will be experienced in helping families like yours.

 

[Drummer]

That does show great distress - did you not warn your son someone was coming to visit?
I can only suggest buying a small pop up tent and when someone comes, put the tent on your son's bed so he can sit in it with anything he finds comforting, and give strict instructions that no one under any pretext is to go into the room - barricade the door from the outside if you have anyone stupid coming.
Ensure the visit is short, and tell your son that there will be a special signal which he can tell you for when it is safe to come out - suggest secret knocks or a whistle. That should both safeguard the visitor and stop your son being classified as violent and dangerous.
Don't ever forget the secret signal. Practice the routine for five minutes, first with you standing outside the door to speak to him, then gradually increase the time until you can 'do it for real' - maybe have something delivered?
There are numerous coping strategies - some incredibly simple and some quite fiendishly clever to help frightened children - I have only read others reporting of them, but maybe there is a forum similar to this one?

 

[Suzanne1]

I don't know how old your little boy is but I agree with what @Drummer say about trying to get some help. It is a different kettle of fish dealing with a small child with the issues your son has but once he is older it is not so easy to manage especially if he becomes violent. If a relationship can be established with a regular carer for even a few hours a week and may help you all in the long run rather than it only being something when there is a crisis.
It is hard to think that others can help but they will be experienced in helping families like yours.

He is 8 and one of three children that with have with huge disabilities

 

[Suzanne1]

That does show great distress - did you not warn your son someone was coming to visit?
I can only suggest buying a small pop up tent and when someone comes, put the tent on your son's bed so he can sit in it with anything he finds comforting, and give strict instructions that no one under any pretext is to go into the room - barricade the door from the outside if you have anyone stupid coming.
Ensure the visit is short, and tell your son that there will be a special signal which he can tell you for when it is safe to come out - suggest secret knocks or a whistle. That should both safeguard the visitor and stop your son being classified as violent and dangerous.
Don't ever forget the secret signal. Practice the routine for five minutes, first with you standing outside the door to speak to him, then gradually increase the time until you can 'do it for real' - maybe have something delivered?
There are numerous coping strategies - some incredibly simple and some quite fiendishly clever to help frightened children - I have only read others reporting of them, but maybe there is a forum similar to this one?

Without meaning to sound rude of course we warned him, in fact it was his choice for them to come. This is a child that is so highly distressed that consultants have to empty their rooms before his appointments, that has permanent 2-2-1 staff in school and can only cope with a few hours and that has taken four years to build that up. He enters massive fight or flight but does not have the capacity to use strategies. We have been told by all professionals what a fantastic job we are doing and we have many strategies in place but he just cannot cope with people in our home. We have been through ten sensory tents before everyone worked out how much they scared him as he felt trapped. Even sedation doesn't work with him and we have just had failed attempts at an MRI and a sleep EEG as he couldn't be sedated and his consultants would not even attempt him in the scanning room unless he was asleep.
We do try very hard and have looked in to all possibilities it is just that in the space of a few short weeks we have been hit with diabetes and cancer and are more tired that usual

 

[Suzanne1]

just wanted to say thanks to everyone for their help today. I have spoken to the Dr who was shocked at the level and feels the pancreas is unable to respond to diet and so has prescribed meds. Thanks for all the help as I wouldnt have called them otherwise