Struggling with practicalities of 12 m.o. & almost 4 y.o.

(50 Posts)
AngelDog Tue 29-Oct-13 12:10:14

Can anyone give me some tips on coping with the practicalities of life with two little ones?

I have a 12 m.o. and 3.10 y.o. I have (undiagnosed) chronic fatigue and find the practicalities of life very difficult. My boys and I have some complicated health problems which make things harder eg all our food needs cooking from scratch and takes a really long time to prepare.

Most of my spare time is taken up by researching our health issues and trying to find people to help us since the NHS doesn't deal with our problems as an identified 'package' of issues.

I am finding it really difficult to cope with the basics of food prep, laundry, keeping on top of basic organisation in the house.

I am very, very tired and rarely get to bed before 1am as there's just so much to do. The baby doesn't nap well - never for more than 40 mins and usually only in the sling, and then only if we're staying at home. He's in the horrible phase where 2 naps are too many and 1 isn't enough. He usually doesn't get to bed till 9pm or so due to a late second nap. DS1 is at home with me full time - nursery is not an option for various reasons.

My parents come & help for an afternoon a week, and my PIL come every week or two, but it is only limited help as I don't really get any extra time - though it does give the boys more attention and proper playing time. DH helps as much as he can but when he's home a lot of his time is spent with the boys as I don't get to give them much time or attention during the week.

We do get out of the house to the park for a short while most days, but we simply can't manage to get out to any groups. We have a couple of friends with similar aged children who each come over every week or two but apart from that I don't get much company. We spend a lot of time doing the shopping.

Any advice on how to handle the practical side of life?

AngelDog Tue 29-Oct-13 12:41:34

I need something like FlyLady really but I don't have the energy to organise it.

ninjanurse Tue 29-Oct-13 12:45:19

I would say you definetly need to meal plan a week in advance and order your shopping online. So much easier, saves time and less hassle than lugging 2 kiddies round the shops. And focus on quick easy meals to cook.

Put a load of washing on timer on before you go to bed so you can hang it out first thing in the morning.

Spend 20 minutes a day blitzing whatever cleaning needs doing. Bathroom, mopping, bedrooms etc. Keep it time limited.

DonkeysDontRideBicycles Tue 29-Oct-13 16:14:28

For the moment, addressing the day to day chores, I am not a perfectionist so perhaps my way of doing things wouldn't suit.

Check the calendar before you go to bed, any appointments next day? Any bills need paying? Prescriptions re-ordering or collecting?

If it's run overnight, put any washing on, if not do it first thing after you get up and see to the DCs.

Allow yourself 'grooming time', grabbing a shower, or washing your hair, better still this can be pulling on something decent, (ie clean and fresh smelling).

Shop online, making sure you are in for the delivery slot. Encourage DH to add to a running shopping list of anything he uses up or that needs replenishing so you don't have to remember them all in your head and run out for things.

Use daily outdoor time for a walk to blow away the cobwebs or meet up with friends. Even if you can only manage a very short distance. Little ones like your company, they don't have to be constantly entertained, stimulation can be from 'helping' you or playing with their toys as you are in the same room but doing something else. Don't be embarrassed to plonk the older one down in front of the tv for a while, as long as you vet what they're watching.

When home, open windows, (cheaper than plug-in room fresheners), put on the radio, find some music. If you are a list person, write down 5 things to get done that day, no matter how trivial, to have the satisfaction of crossing them off.

My DM used to focus on one room a day over 5 days. I like to have one room straight where unexpected callers can sit without feeling they're in a muddle. I'd rather have company and "take me as you find me" than an immaculate home and nobody adult to talk to until DH returns.

I have heard someone suggest using a timer, coupled with a sort of 'chore and reward' programme. Set a timer for 20 - 30 minutes. I know some of that is taken up with nappy changing and kiddy interruptions.

So empty/load dishwasher or wash up, wipe all the kitchen surfaces, sweep up crumbs, empty bin, throw back the bedding to air beds, check bathroom(s). Then sit and rest, check MN, have a drink. 15 minutes' at least. Then walk round with something like a laundry basket, pick up stray stuff that belongs elsewhere or random papers, clothing, toys. When dusting cheat with a slightly damp cloth where appropriate, pick up dust rather than spread it. Then hoover and/or mop downstairs, then sit, rest, with drink and snack. Read DC1 a story, have 1:1 time when DC2 naps.

If you can have a restful soak in the bath while your parents/PILs are round, excellent. If someone can do some ironing or just fold up the bigger items, brilliant. If there are cobwebs to eradicate in the high corners or they can wash the downstairs windows, fantastic.

Ironing and cleaning windows imo are bonus items, you want to be able to walk through the house without tripping hazards, you want to eat without getting bugs, you want to have clean (if not perfectly ironed to Jeeves's standard) clothing.

AngelDog Wed 30-Oct-13 18:16:27

Thank you. smile

We are pretty good at dispensing with non-essentials like ironing, cleaning etc. I really should use the timer idea again.

waterrat Wed 30-Oct-13 18:36:30

Do you really need to stay up till 1? That would kill me! My way of coping is early bed whenever possible - if I was you I would make that a priority. If housework and cooking are keeping you up that late then you need a different system.

I cook from scratch but mainly simple stuff - as long as lots of veg you don't new much variety !

I think the lack of a proper nights sleep is probably making everything else harder.

DollyShouldHaveDumpedStiva Wed 30-Oct-13 18:47:25

Could you tell us more about the dietary restrictions so we could make food prep suggestions?

Are you sure your chronic fatigue problems are not simply due to the fact that you are just not getting enough sleep? I would feel at death's door going to bed at 1am and then looking after 2 children during the day. Seriously. I would be down at the doctors telling them there was something wrong with me cos i felt so bad.

When you say "there is too much to do", what is it you are referring to, seeing as you say you are pretty good at dispensing with non-essentials like ironing? (Didn't understand the cleaning being bunged in with the non-essentials either, unless you are talking about dusting, which I never seem to manage to do.)

Oblomov Wed 30-Oct-13 18:58:38

Why are you staying up till 1am. I have diabetes and thus bad fatigue. I sometimes put the kids to bed and jump into bed myself at 8pm , when dh isn't here. Bliss.

AngelDog Thu 31-Oct-13 00:14:32

Thank you. The fatigue is a medical issue which has come up on tests etc; I've just not got a formal diagnosis from my GP as I've been seeing a private practitioner about it. But the lack of sleep isn't helping.

DS2 usually finally gets to sleep at about 9pm then I usually spend an hour or so researching around our health issues or ordering the things we need to help with them (mainly dietary supplements). Then I clear up the dinner things and do some cooking for the next day.

Carbs need to be soaked, drained, rinsed, drained and then cooked so I do the soaking etc during the day, and the rest of the prep in the evening, portion them up and freeze ready for the next day. Unfortunately DS2 doesn't tolerate the same foods as DS1 and I so he needs separate things cooking for him.

We tolerate barely any veg (no fruit) so the ones we can eat, we have at every meal and snack. Unfortunately most need cooking separately to deal in various ways with the natural food chemicals they contain, and DS2 won't eat the same things that DS1 and I are able to eat. I think I probably need to get the veg all out and peeled the night before so it's quicker to organise during the day.

I also have a whole lot of dietary supplements to dose out for the 3 of us, which probably takes at least half an hour. DS2 usually needs bf'ing once or twice before I go to bed too.

I'd love DS2 to go to bed earlier but that just doesn't work with having 2 naps. If I try to give him only 1 he still only naps for 40 mins, he crashes at about 5pm then gets so overtired he simply can't go to sleep till about 9pm anyway.

I need a housekeeper! smile

waterrat Thu 31-Oct-13 05:56:15

Well I think you need to really make yourself get into bed by 10 and not spend every night researching health issues - because you can only be getting about 5/6 hours sleep a night which is exacerbating health issues.

Surely if you have fatigue as a health problem sleep should be a priority.

And there must be a quicker way than soaking carbs ?! What carbs do you mean ?

lolalotta Thu 31-Oct-13 06:09:02

Can u batch cook?

SteamWisher Thu 31-Oct-13 06:14:19

Is the private practitioner a medical professional? What is their profession? I would be hmm to be honest - I know someone who's "nutritionist" diagnosed them by getting them to hold vibrating wands hmm

You shouldn't need to research into the early hours every day - there's only so much info surely. And why isn't the private practitioner providing this information?

I agree with pp who said is this just exhaustion? How was your life before DCs? Did your diet affect your life? As for the kids not tolerating foods - what are the symptoms? Is it just fussiness exacerbated by tiredness?

If your ds cannot go to nursery for dietary reasons, what happens when he starts school? Can you put him into a preschool for just morning sessions where he won't eat there? Then instruct the nursery to keep him away from certain foods - my son's preschool is excellent and deals with severe allergies so certainly possible. And your DS's age is such that he would get free hours.

I would also be concerned that despite your supplements you could be deficient adding to the tiredness.

Can you get your baby into a better routine? I would go to one nap and put him to bed super early, say around 6pm. It sounds horrible but get him napping in the pushchair or cot if you can. Former might be easier - use a blackout cover, go for a walk then park him somewhere. What times are you napping? 9pm bedtimes are going to be making him
Massively overtired so you need a week or so to work on sleep.

Also shop online for food.

DonkeysDontRideBicycles Thu 31-Oct-13 10:26:09

I don't have relevant expertise in dietary requirements so am sorry I'm unable to offer advice. Do you mind me saying - and I am not under-estimating the stress and effort you put up with - but to an outsider, it sounds as though at least half your world is shrinking to food preparation and consumption. And consequently your family loses downtime with you. I appreciate food is vital but I am concerned other types of nourishment take a distant second place. Your DCs have input from DH and grandparents but the impact of trying to fit so much in is taking its toll.

How does your DH fit in with this, you say he provides suppport, does he ever suggest exploring further help from health/nutritional professionals?

nocarsgo Thu 31-Oct-13 10:45:38

Who is advising you on your dietary needs? It does rather sound like you are devoting an enormous amount of time and energy on research, dietary supplements and complicated food prep... on the basis of what exactly?

It's just that when you say you need to prepare food in a certain way because of "natural food chemicals" I rather suspect that some woo practitioner is feeding you a load of utter nonsense.

You say the NHS have no diagnosis for you or either of your children? Would you mind telling us what your private practitioner has diagnosed? And on what grounds are you not allowed to eat any fruit or vegetables?

Ok, I'll be honest. You sound misguided and rather obsessed. Spending all your free time Googling your problems in search of validation is obsessive and unhealthy. The internet is full of people coming together to compare conspiracy theories about their health problems and why conventional medicine won't diagnose or help them. There's usually a good reason for that.

nocarsgo Thu 31-Oct-13 11:00:01

I also have a whole lot of dietary supplements to dose out for the 3 of us, which probably takes at least half an hour. DS2 usually needs bf'ing once or twice before I go to bed too.

And this - the three of you take so many dietary supplements it takes you HALF AN HOUR to administer them?

Your children are one and not-yet-four.

That is frightening. What are you giving them and is it safe to give a baby and a child all this stuff?

waterrat Thu 31-Oct-13 11:49:24

I agree with others - are you backed by medical advice in not giving your children fruit and limiting their diet?

More importantly - stop spending hours online at night, you can't separate chronic exhaustion from lack of sleep - say you are asleep at 130 and up at 630/7? That is not enough sleep for anyone - do you suffer from anxiety?

I think you should try a month of No research at night and going to bed early .

HoleyGhost Thu 31-Oct-13 12:49:09

I think you should speak to your GP and health visitor.

AgathaF Thu 31-Oct-13 17:56:33

Your life sounds excessively complicated. You are unsurprisingly tired due to the lack of sleep you are getting.

I am struggling to understand some of what you write, so like other posters, I have some questions -

When you say that your children 'don't tolerate' certain foods, what happens to them when they eat those foods?

When were you diagnosed by your private practitioner?

The supplements that your children are taking daily - who suggested them, where are they from?

Given that you have a diagnosis from a private practitioner, why do you need to still spend so much time researching your health issues?

Have you spoken to your GP about this issue at all, and if so what was the reply?

In all honesty, you sound to me like you are suffering from post natal depression (I am an ex midwife so have some knowledge of this).

DonkeysDontRideBicycles Thu 31-Oct-13 18:28:22

Being a caring conscientious mother can sometimes leave a person depleting their own reserves of energy. I would hate to think these health concerns could isolate you. We only see a snapshot so to speak, so with the best will in the world can only advise based on what you tell us. Do you think perhaps a chat with your GP to outline the lengths you go to might help getting further support?

I am very worried for you. Who exactly IS this private practitioner? What is their area of expertise and what are their qualifications? How did you come to see them? Did you go to your GP first, and if so what happened as a result of that? Have you seen any consultants at an NHS hospital? What are the children's supplements? Very worrying that they are taking half an hour to administer.

I am also concerned that you might be obsessing over something that you don't have a proper diagnosis for (if this private practitioner is not medically qualified, then you can't really call it a diagnosis.).

This is not how you should be living your life. I would get back to the GP ASAP and get them to tell you exactly what they think is wrong with you.

SoftSheen Thu 31-Oct-13 20:19:04

You sound like you are having a hard time. It must be very tough to cope with two young children full time as well as deal with your own health issues. My suggestions would be:

-Go back to your GP and ask to see a fully qualified NHS dietitian and base any changes to your and your young children's diets on their advice, rather than on the advice of any practitioner who doesn't have recognised professional qualifications.

-Do your shopping online, once a week.

-Get to bed much earlier and don't spend hours researching your medical issues- leave that to the doctors.

-Try to get your elder son into preschool- even if he has food allergies and /or other additional needs, a good preschool should be able to cope with this. You will get a bit of a break, and he will benefit from the opportunities for social interaction and different activities.

-Make it a priority to get out of the house every day, to the park, soft play, a group or a friends house. This will help keep you sane as well as (hopefully) wearing out the children a bit.

-Could you afford to get a cleaner for a couple of hours a week, just for a month or two? Or perhaps for a one-off deep clean?

SteamWisher Thu 31-Oct-13 20:40:52

Angel, I hope you're ok having read these responses. seeing your circumstances in black and white shows just how difficult they are and how much scope there is for you to change things.
Good luck!

waterrat Thu 31-Oct-13 21:08:05

Op I know people here don't know the reality of what you are dealing with - I hope my posts were not dismissive of your diet concerns

I do however think you should make sure your son gets his nursery hours and you should get more early nights !

ImNotCute Thu 31-Oct-13 21:46:00

Hi op, my kids are just a little older than yours, with a similar age gap. It is tough sometimes and there is no way I could function if I wasn't getting to bed until 1am and spending hours in com

ImNotCute Thu 31-Oct-13 21:54:01

Oops, sorry, posted too soon.... Spending hours on complicated food prep.

I googled the term you used "natural food chemicals" as I work in medical research but it all sounded quite unfamiliar to me. The list of symptoms for this intolerance is so long and varied, I hope you are absolutely sure all the extra effort is needed? I would strongly advise getting a 2nd opinion. It is a little worrying that the type of sites you're researching on seem to encourage you not to trust your own gp/ dietician. Actually the nhs is usually pretty good.

I hope the concerns people have expressed don't upset you/ make you feel defensive. Having kids of a similar age I can imagine how hard this is for you and I'm genuinely concerned for you all.

SoftSheen Sat 02-Nov-13 10:40:14

Hope you are all right OP brew

AngelDog Sat 02-Nov-13 21:51:54

Sorry to disappear - DS2 has been out of sorts and harder work than usual. Thank you for all the comments and suggestions. smile

Our food problems are real ones and are symptomatic of underlying issues. Our reactions to foods vary but include diarrhoea, reflux, eczema, and behavioural/neurological problems (eg DS1 starts biting himself, hitting people, destroying things within minutes of eating lots of foods). He also has 10 food allergies though they're different and we see the allergy clinic for those.

The woman we've been consulting with isn't a medical professional, but the tests are recognised medical ones and we've taken the results to our GP who is really supportive, and is aware of the generalities of what we're doing with supplements.

By his own admission he has been struggling to know where to refer us since (as he says) there is nowhere in the NHS which deals with the package of problems we have. Part of the problem is that lots of this is quite new science, only just starting to be researched in the US and not widely known about except in specialist fields that deal with problems which we don't actually have. The support groups for it are all based online and most people in them are struggling to educate their doctors about the details, especially since new information is being learnt all the time.

We've just got an appointment for DS1 at Great Ormond Street though, so hopefully that will be a step forward on the health front - and they may have some better ideas as to who would be helpful for me to consult with.

Food intolerances are better understood in Australia - anyone interested could have a look at the Food Intolerance Network website which is about some of the things we have problems with.

I've been trying to get DS2 to have just one nap, but it's mostly meant he wakes right up an hour after I put him to bed and he's then wide awake till about half past ten which has been even harder work.

I do think I need to do more to get food prepared the night before so I don't have to do so much in the daytime.

I definitely need to do online shopping, though some things I can't get from supermarkets eg we have to buy meat within a day or two of it arriving at the butcher's shop or we can't tolerate it.

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Sunnysummer Sat 02-Nov-13 23:39:53

You sound like you are doing an amazing job to hold your family together under all of these stressors and responsibolities.

Like a number of previous posters, I am concerned about how anyone could continue to cope with all of this, and in particular about the advice you are being given. It is fantastic that you have a referral to Great Ormond St to get to the bottom of these things, because it sounds like some of your medical issues might have got mixed in with some red herrings, and the doctors will be able to get to the bottom of what's definitely causing the problems.

In your googling, have you ever come across health anxiety and vulnerable child syndrome? Both can be outcomes of dealing with parenthood and in particular parenthood of an ill child - we start to see them as uniquely vulnerable and it can end up severely restricting life for the family and for the child.

I would really push your GP for help and for diagnosis - for example, a diagnosis of ME (or another issue causing this) would also help you to access a lot more support. Have you been able to make your GP aware of all the challenges you are facing? Perhaps you could print out this thread to help explain clearly, it's easy to get flustered or sidetracked when there is so much on your plate and perhaps your GP has never had a full picture of all of your challenges. If your GP continues to say they cannot help then you may want to see another.

In the meantime I would strongly suggest diverting some of the funds for the private practitioner towards a cleaner and getting the ironing done for you. Perhaps you also have family who can come and help out? You are trying so hard and clearly loving so much, but noone should have to deal with all this alone. thanks

SteamWisher Sun 03-Nov-13 06:55:57

I think Angel, people are struggling because it is unheard of here and you've talked about non medical practitioners which immediately makes people sceptical.

I've seen you on sleep boards previously and know that you've had trouble with sleep so something isn't working.

But again I'd be wary of going down this road - its killing you from what I can see. I remember when dd was at her worst sleep wise, I cut out all foods (BFing) except rice, turkey and sweetcorn hmm as I was convinced at one point she reacted to everything. Her sleep was atrocious. I used to watch for cause and effect and see it when it wasn't really there. It meant I didn't actually tackle her sleep once she got a bit older as convinced myself it was impossible.

I think you need to make some changes - your DH needs to pull his weight because if his wife and kids are suffering then quite frankly spending time with the kids instead of doing housework is not enough. Get a cleaner in, get your ds into preschool (you didn't explain why not?) and take some life back!

SteamWisher Sun 03-Nov-13 06:56:50

*I will add that dd was intolerant to some foods and still is but not as much as I has convinced myself.

TiredFeet Sun 03-Nov-13 07:20:49

I feel exhausted just reading about your day. My son has multiple severe allergies and some intolerances/ eczema and I have an auto immune disorder that causes chronic fatigue and no way do I have the time or inclination to do an hours research a night. I am quite worried about how you have overwhelmed yourself with this. Is the research really necessary? Could your dh do it for you and ease the burden? Could your son go to pre school and take his own food in?

TiredFeet Sun 03-Nov-13 07:33:35

Also, I agree with whoever posted that actually the nhs is pretty good, not so much gp's but if you are seeing paediatricians/dietitians then they are very clued up about allergies/intolerances. You really shouldn't need to be doing all this research. And I think any one would have chronic fatigue symptoms on only a few hours sleep a night.

LovesBeingHereAgain Sun 03-Nov-13 07:45:23

If you can prepare and freeze for tge next day then you should be doing larger batches in one go.

Are you sure your GP is understanding and not just fibbing you off?

You cannot stay up that late everynight it is doing you harm, research sleep deprivation!

Your dh doesn't seem to feature much is he supportive/aware of everything/pulling his weight?

JeanSeberg Sun 03-Nov-13 07:52:21

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comewinewithmoi Sun 03-Nov-13 07:58:37

I don't get. It op. sorry.

ZenNudist Sun 03-Nov-13 08:24:46

Op mumsnet like to help but your problems are very specialist. To outsiders in the limited explanation you can do on mn it sounds as if you are suffering from mental health issues, which affects your care of your children.

You are clearly suffering & your life has become unbearable. Things should be so much easier. I can't tell if you have a genuine food issue or are seeing problems where there are none. Certainly you need to be honest with your doctors about what you up to not just in terms of some generalities But also in terms of the toll it is taking on your life.

Please seriously consider if the 'cures' you have found through 'new science' are doing more harm for you & your children than good.

AngelDog Sun 03-Nov-13 08:47:23

Curlyhairedassassin, protein foods (especially meats/fish) have chemicals called amines (eg histamine) which build up in the food between slaughter & eating. Some people's bodies have difficulty breaking them down.

You can read about them in these peer-reviewed scientific papers:

Control of Biogenic Amines in Food?Existing and Emerging Approaches

intolerance http://www.ncbi.nlm.nih.gov/pubmed/23821960

Thank you for reading carefully. smile

HoleyGhost Sun 03-Nov-13 09:34:09

Please, please explain all of this in detail to your gp or another gp or your hv.

What does your dh think of all this?

I'm sorry, OP, I shouldn't have been so dismissive perhaps, and instead replied in the way some others have. To ME, this all sounds excessive, hence you are coming across as a hypochondriac. I'm sorry if you feel this is genuinely not the case and we are dismissing valid concerns.

But I don't recall reading about exactly WHAT these symtoms you and the children are experiencing are? I know you mentioned about one of the children biting himself and hitting after certain foods - have others witnessed this? What food is it? Can you be certain it is not just a coincidence and it is all down to typical toddler behaviour/ill-considered behaviour management on your part?

What are your exact symptoms? For what foods? When did it all start and who was the first person you consulted about it?

Please find time to try and explain as you are going to come across disbelieving people like us in life when you start telling them this stuff as it is all so extreme.

Ok. I have had a quick scan through the top article you mention. It refers mainly to it being a problem in subsistence populations which do not have adequate temperature control of meat and fish, hence allowing these histamines to build up. I'm not sure where you live but I'm pretty sure that if you are in a westernised country that any meat or fish you will consume will have been adequately chilled by law, to prevent this chemical build up which you are saying you have an intolerance to.

I am starting to think that you are perhaps seeing things which just aren't there, OP.

Incidentally, the article mentions that even with chilling foods a very small amount of these chemicals may be still present. It also mentions that antidepressants can make it more difficult for some people to tolerate these chemicals. So I was wondering if you are on antidepressants, if you GENUINELY feel there is a problem with this.

ilovemountains Sun 03-Nov-13 10:34:51

Have you tried to get your oldest into a pre school? You can provide the food. Presumably he will be starting school next year, a pre school might be excellent for him, particularly as it sounds like he doesn't get to socialise or play much. That would free up a lot of your time.

SoftSheen Sun 03-Nov-13 10:50:05

Could you buy the meat fresh, and then freeze it in portions so that you can take out a new one each day? That way you could visit the butcher just once every week or two.

But I really do think that you should push hard to be referred to an NHS dietician, in addition to the other practitioner you are seeing. A qualified dietician will be able to help make sure that your children's diets are properly balanced and suited to their needs, at such an important time in their development.

I am not medically qualified (probably no-one on this thread is), but it seems obvious to me that making sure everyone's nutritional needs are well met, and that everyone gets a decent amount of sleep, can only have a positive effect on health, whatever the underlying issues.

Good Luck smile

AngelDog Sun 03-Nov-13 11:05:50

Thank you for all the ideas. We are going to continue to follow things up with the NHS. I should perhaps have explained that the reason we were pursuing an alternative route to investigating all of this is that the NHS have been trying to work out why DS1 reacts to foods for the last 2.5 years, but without any progress so far. Thanks to the people we've been consulting with and the research I've done he is now able to eat a number of foods he would previously refuse because they were making him ill. His diet is broader now than for much of his life because he self-limited what he ate (because of the intolerances, though we didn't realise that for a long time).

The team he has been referred to at GOSH include dieticians and nutritionists so we will have advice from them.

Friends and family have described the change in his behaviour since working on this as 'miraculous' and people are always commenting to me about how good it is that his long-standing really bad facial eczema has cleared up so I'm pretty confident it's not just my imagination.

Thanks again for all the suggestions; I'm going to go and get on with sorting out the baby now. smile

Sunnysummer Sun 03-Nov-13 11:16:56

OP I really hope that some of the less supportive messages on this post don't lead you to dismiss all of us.

None of us can fully understand the complex challenges that you and your family are facing without specialist expertise and more detail than we can get on a forum posting. However I do have some experience in this area and very, very strongly urge you to really pursue this with your doctors.

I would suggest making a full list of the issues you have identified for each family member, along with all the current treatments you require including supplements, dietary changes and treatments by all practitioners (traditional and alternative), plus a sample schedule to communicate the daily time you are spending to meet all these requirements.

If you present this to your GP (or possible a new and more active GP) and the doctors at Great Ormond St it will really help them understand the magnitude of what you are going through. It will take some time, but is worth sacrificing a few hours of research for, as it will be even more helpful in getting the support you need.

With more official diagnoses for all of you - whatever they turn out to be - you and your family should become eligible to access more practical and medical support. With extra help you will be able to spend some extra time playing with your children rather than working nonstop to put food on the table, and with greater confidence in diagnoses you will be able to catch up on sleep instead of having to research late into the night.

thanks for you holding it all together in the meantime, and for your family too, you clearly have it very hard right now. Can your family take over cooking for a day or two while you take the time to play with the DCs and catch up with your DH? I bet you all miss one another. Unmumsnetty hugs. ((()))

Thanks for having the patience to explain your situation more fully. Sounds very complicated so I guess even if the thread should revert back to its original intentions of suggesting advice to cope with the practicalities of life with young kids then it would be difficult to offer any suggestions that might work for your unique situation.

I hope you find a resolution to your problems soon.

NorthernShores Sun 03-Nov-13 11:25:33

I have ME and there I absolutely no way I'd be able to research in the evenings and stay up until 1. There is also no test for ME (you say you've been tested?). There is criteria a consultant will look at before diagnosing you and locally send you to a clinic. They will absolutely recommend good sleep hygiene - going to bed at the same time each night (not 1 !) and getting up at a regular time.
We were also recommended a normal balanced diet. My worry for you is that extreme tiredness can exasperate depression or other mental ill health and might ad triggering anxiety.

I would definitely get your older one into a pre school. You can prepare the lunch or not stay for lunch. I know where I was so exhausted I was desperate for my oldest to go so they got some time to safely play with others regularly even if I wasn't up to taking her to the park or friends that day.

NorthernShores Sun 03-Nov-13 11:28:42

Oh and what sunnysummer says is fantastic advice too. Have a full list of what you are doing and why when you go in and include what you have been recommended and why from alternative, mainstream and your internet searches. It will help them to see the bigger picture.

Good luck - hope you find it useful and that they can help with the diet. Please make sleep a priority.

SteamWisher Sun 03-Nov-13 14:24:53

Good luck OP. it sounds horrific - an incredible strain on you. Sorry for my earlier posts being unhelpful. Please do look after yourself a bit more though!

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