The Goose and Carrot Thread

[hibernatinghedgehog]

Everyone is welcome. The thread is deleted after 90 days.

@hibernatinghedgehog did you look at optimal levels of blood results? The NHS thresholds are sometimes inadequate even if technically acceptable. Ferritin, B12, vit D are all given a much lower acceptable range than most women of our age can cope with. I take magnesium, Q10, B12, and riboflavin.

I sense that you don't actually get respite even when DS1 has carers, if DS3 also needs attention. Is there any way you and DH could take turns to get a proper rest? Probably not, but worth asking.

DD1 is funny. She leans forwards in the car, asks an all-important question about the care home, then nods with satisfaction at my answer and returns to singing to her music. Today was "I need to ask how they do Christmas and whether they do a Christmas dinner", "Do I get to take my Nintendo Switch with me?" and "I'm worried that the answer (to being given a place) will be no."

@Lougle Food and drink are absolutely crucial to DD1, when it comes to residential placements! She went for tea at one of the potential houses for her at FE college. They gave her jacket potato with something - she doesn’t like jacket potatoes. Then they didn’t have apple juice, only squash! She flatly refused to go to that house! They had to send her to another one, where clearly the food and drink was better! (The school house knew her food likes and dislikes; so they could have organised themselves better)

I went to my GP with chronic fatigue and a recurrent UTI, a few years ago. The investigation showed I had two benign tumours, and genito-urinary syndrome, all of which can cause fatigue. My neurologist also told me dystonia can cause fatigue, which I didn’t know.

Vicar is coming to see us tomorrow. DD has been to see a hamster that the independent pet shop has just got in and we are reserving one. The shop seems on a different planet to Pets At Home, they won't sell pets during December for ethical reasons.

Hope the vicars visit is helpful @drspouse That's nice to be getting a hamster for your DD. I hope the funeral goes as well as it can and thinking of you all.

Had to drive past the Explorers hall tonight (it's actually literally at the end of our road but set back, so you don't really see it unless the lights are on). DS should have been in there tonight. He never got to wear his shirt as he missed the last meeting before half term.

Drspouse it is so very wrong. The should-bes weigh heavy. Your DS should be there, wearing his shirt, working towards more badges and being enthusiastic about helping with the beavers.

@NightHeron dystonia definitely contributes to DS1’s fatigue.

@Lougle DH does his fair share of care overall, and he has taken on more and more over the last couple of years, particularly the physical side. Although I do more of the night care. Primarily because I am often awake anyway as I don’t sleep well, but also DH can fall asleep easily and sleep through anything so even if it is a night DS1 has carers (the overnight care at home is care rather than respite) by the time e.g. DS3’s feed pump alarm has woken DH I am already awake. While an irritating trait, it is genuine rather than a ploy to get me to get up instead.

The bloods that have been done for vitamins/minerals are all genuinely OK, not just NHS OK. I take a multivitamin and extra colecalciferol. I tried adding magnesium and zinc to help with sleep, but they didn’t make a difference.

@drspouse it's all wrong and heartbreaking. He should have worn his shirt. You should be moaning about mundane things of day to day life, not dealing with the aftermath of a tragedy.

@hibernatinghedgehog I don't think the supplements I take make a difference, either, but it does mean that I can say I've taken everything and I still feel rubbish! DH is the same re sleep. I had to ban significant conversations at bedtime years ago because he'd roll over and fall asleep, and I'd spend the night tossing and turning.

DD1 was worrying again tonight. Tiredness brings out her fears. I got a bit short with her and she said that I probably wouldn't even miss her when she moves. It stung a bit.

@Lougle it is DD1's anxiety talking. Deep down, she knows you will miss her. Similar to the ‘I don’t like you’/‘you aren’t my friend’ of young DC.

I had to ban significant conversations at bedtime years ago because he'd roll over and fall asleep, and I'd spend the night tossing and turning.

And I bet your DH hadn’t a clue until you mentioned it.

When DSs were younger, we regularly ended up with 5 in a bed. I would leave DH with DSs and decamp to one of DSs’ beds (or their bed, they shared a double for a while) because DH could sleep through the flailing arms, kicks, legs wrapped round him, duvet stealing, etc. whereas I can not and I am alert to every movement, noise, change of pattern, etc.

@drspouse he should have got to wear his shirt. He should be here and you should have been doing a trillion different things. I hope the vicar was useful and the funeral is beautiful for your beautiful son.

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Avoiding gluten, and eating turmeric helps my joints. Sleep is harder to manage but I nap if I can, but I have a much lighter load than many of you.

@Lougle she sounds so excited about it all. Write it all down. You will want to remember.

ds has been laminating all evening, downstairs with me “watching” Home Alone so he could watch it without agreeing to watch it. His PA is putting her rates up. I’m worried they won’t agree to that for direct payments as she was already more than basic rates. I tried to phone today but things kept interrupting, there must be a process I just don’t know what it is.

@drspouse it that the shirt DS was trying on in practice for Explorers? How painful for you that he didn’t get to wear it at a session as he was so delighted. So much is being asked of you. I hope your plans with the vicar go well and DS has many candles lit for him. I’ve been thinking about him and your DD being candle holders and you being surprised. You are in my prays.

Red yes that's the one.
Thank you all so much for listening.

@hibernatinghedgehog @Lougle I commented on a new toddler mum's thread who was really upset that her 3 year old had said "I don't like you" and was distraught. I did laugh a bit and told her to toughen up. What I forgot to say was, I wished I had NOT had to go to the DCs' parties when they had uninvited me, children's parties are hell on earth!

DD has got the school bus the last two mornings and I've been getting up early with her which I think is good for me. I've sent a holding message to work just to say how long my current fit note is and which jobs I've sent paperwork for (relatively easy to share work folders with one colleague, don't worry, it's not real work).

@drspouse I’ve been reading along but feel I cant offer much (without worrying I’ve said the wrong thing) other than you have been in my thoughts a lot even though we’ve never met, and I hope you have comfort from those around you. I can’t comprehend a pain with so so many What Ifs that no parent should have to feel but sadly too many do.

@hibernatinghedgehog sorry to hear your struggling with increasing fatigue you have a heavy caring load to carry but it’s also the time of year when so so many viral infections about which could be niggling away taking that valuable 20% energy you don’t have spare. I would only echo what others have said to carve out slivers of self care where you can. It’s sounds contrite but just sitting on my yoga mat to clear my mind for 10mins really does help boost my energy especially if I can do a few small stretches too. I hope you can find something to help.

Im sat outside the exam centre for no2 this week I’m as nervous as DD2 I think but hiding it & hope this one goes as well as she thinks paper 1 did. Now need to refocus on work but my brain is in Friday mode as been awake since 5am mind whirling away.

@drspouse I hope your DD is finding the return to school beneficial and that it gives you some space for you and DH. Sorry about passing the hall and his shirt. I hope the vicars visit is helpful.

Good luck with the exams @Woolyhatson

Sorry about DD1s comment @Lougle, maybe she wants reassurance she will be missed though her comments about 2 birthdays are good and it'll mean 2 Christmas meals as well. Despite being stick thin my DS was always obsessed with meals.

We are continuing tiling today and also will go out late afternoon. I had a largely sleepless night worried about the electrics and doing it around DS but everything else is going well. The electricians heard back from but they are refusing to issue the part Ps and EIC unless we either pay and order the extra work, 50% now or they come in and cut off almost every socket in the house including boiler and kitchen. Only the laundry room, one socket in living room and our bedroom would have electricity which would also cut wifi. I did manage to get more out of them on the issues and they said they showed DH which rather unhelpfully he didn't tell me. But no official report on issues and DH said they showed him one burnt out socket behind his piano and evidence of rodents in one living room plug.

We also may need listed buildings consent for any work, need the part P and EIC - I phoned NAPIT to ask anonymously about things - the prices they are charging seem reasonable but not convinced things are always being done correctly or the 19 year old boys are fully trained. The firm is registered and has excellent reviews and they are polite and hardworking. But it feels like we are being held to ransom over this. Though we have to be super careful with safety being timber framed thatch. But don't know if they have any experience of listed buildings or thatch electricals, I got them originally for extension and they were fine with that but this is a much bigger project. I also need listed buildings to reply but they take a long time due to lack of staff.

@drspouse I hope work is being understanding and not pressuring you for a return date. There’s no right way. You do what you need to do. I know I have said that a lot, but it’s true. Some go back sooner either because of circumstances beyond their control or because keeping busy helps (not in a 'getting over it' or 'moving on' way, definitely not, but in a getting through the days way); some have a lot longer off; some have a relatively short period of time off, then go back, then have more time off.

You’re right about children’s parties. That mum has a long road ahead if she doesn’t grow a thicker skin.

When DD1 was 3 she went through a, thankfully short-lived, phase of having an imaginary mummy. Whenever I told her to do something she didn’t want to do or said no to something she would say things like “Other Mummy says…” or “Other Mummy isn’t mean.” It stopped when, after a long day of Other Mummy being so much better, I said “ask your other mummy” when DD1 asked for another story at bedtime. We laughed about the Other Mummy phase when she was older, and as a teen, when I said something she didn’t like, she would occasionally jokingly say, “Other Mummy…”

Good luck to DD2 @Woolyhatson.

Had a call with electricians and made a bit of progress. Have sent an emergency LBC through to listed buildings. The electricians are coming back end of next week for half a day for free and they will take lots of sockets out of action but put some back, and then do sign offs.

I love the "Other Mummy" approach to problem solving. My DM was really on form today (she has mental health difficulties) and when I mentioned DD1's placement she turned to DD1 and said "I'm really worried about it". I could have done with "Other Mummy says..."!

The SW has been in contact. She's visiting to tell DD1 about the residential setting on Monday. We're visiting with the psychologist on Friday, who will bring all the work she's been doing with DD1. The SW says that they will be ready for DD1 from 23/11/26.

@hibernatinghedgehog other mummy is very cute, occasionally i’m told I might be swapped. I find that if the physical caring has been hard then my body has been worn out by repetitive movements and I have no energy for the cardio and stretching, fresh air type of activity that keeps a body healthy, it’s like my energy units have been used up and I just want to sit or lie down if that makes any sense.

@drspouse i hope that anonymous ears are giving you an alternative place to put your thoughts.

@drspouse it's good that work is on hold. DD is doing really well to go to school on the bus.

@Lougle that’s good progress. I’m glad you aren’t going to be left in limbo for ages. Is the placement the assessment placement you mentioned previously or is it a different one that can be a long term placement if it works out OK? I’m sorry DP’s are anxious about DD1’s move.

@RedMoniker it makes complete sense to me. Swapped made me smile.

@hibernatinghedgehog it's an assessment placement but she's likely to be there several months. The psychologist told me today that they are only allowed to refer there if the client is at very high risk of placement breakdown. DD1 has been given a place because it's extremely likely that any first placement would break down and they have the expertise to work through it with her and identify what she will need long-term.

Social services have been in contact to review ds’s direct payments (I assume as “review” was mentioned in answer phone message but sound was poor so I’m guessing). Our last assessment was done when ds was still going to college and had an EHC. I think everything is soooo different now. Not just no college but more seizures and low energy and he’s much older iykwim. Is the review a repeat of the initial assessment?