What are you up to today if you have chronic illness? Thread 3

[MewithME]

Link to last thread.

https://www.mumsnet.com/talk/_chat/5406424-what-are-you-up-to-today-if-you-have-chronic-illness-part-2

Can't believe we filled another one.

@Tiredandwired2 your trip sounds like fun! Glad you have seen some progress.

The EMDR sounds good for specific trauma, I wonder if it can help in other ways. DGS is just totally lacking in confidence, and thinks he will be mocked at school.

He just wants to be 'normal'. His thinking is very black and white, which does lead to disagreements. Eg he was on an online group for minecraft (pals he'd had since primary school) and he objected to some of them swearing, so he left the group permanently. People don't live up to his ideals! He's objecting to plastic chopping boards at home now. So very thoughtful and idealistic but the real world will never live up to his standards! Just the sweetest boy though.

One of my boys is very rigid, he’s not autistic, but certainly has traits (as do I). We just see his rigidity as normal now and try and work with him, but god it’s hard when he’s losing it about different things.

it sounds like he could benefit from some support from an autism specialist therapist, someone that can understand his rigidity and special interests and work with him. Double empathy problem and theory of mind challenges explain a lot of what happens when communication goes wrong.

With confidence that often comes down to anxiety, panic and coping skills. He thinks something bad will happen and he won’t be able to cope. Getting him to think through and have an agreed and rigid process for coping with these situations and using comic strip conversations or social stories can be really helpful to plan out situations.

Thanks @FurForksSake it's interesting to see all the different needs laid out. Luckily the tutors have been wonderful, and very supportive about him aiming for college. Lots of geeky courses!

On the bright side, remembering him from age 4, hardly verbal, he has come a long way. I have read that ASD children lag behind by about a third in terms of maturity, and this seemed to hold true in his case. I am ever hopeful!

Dull and grey here today, but at least it's stopped raining. Yesterday evening was lovely - curry and cake followed by a boardgame. So great to have the house full again 🥰

DH has a sore head this morning and is slowly making his way through the kitchen devastation. I'm staying in bed with tea and my heat pad on my lower back. I have also booked a soft tissue massage for next week so 🤞 that helps too.

Today will be more rest, Greek kebabs and salad for tea and Strictly. Take it easy everyone 💕

Had an hour with a 9 month old on the rampage. So lovely to see her but I'm tired just watching ! Need a sleep now ;-)

Oh bless him! It sounds like the scuffle with the boy has been a traumatic event for him. Definitely let his mum know about EMDR. My son is Flexi schooled as his PTSD caused him to not what to separate from me so going to school became a huge struggle when previously he'd loved school, he only attends 2 hours per week and I home educate him the rest of the time with the work being provided by the school.

Wow that does sound like PTSD from the event of your father leaving and if you had no speech til 4.5 were you ever considered for a ASD diagnosis? I know back then it wasn't the done thing. My nightmares are horrific and wake my regularly.

Thanks @Realisation14 much appreciated.

i remember vividly being taken to the health visitor before I started school and them discussing my lack of speech. They told my mother I was probably retarded or something awful and they wanted to refer me. She told them that I was just fine and just lived in my head. I don’t think anyone in the 80s was autistic unless they had numerous outward signs and difficulties and was unable to function. I went to school, couldn’t / wouldn’t speak. And then for whatever reason I just did. And then they made me do lots of tests and told me i had a reading age of 16+ at about 6.

I wasn’t given class work to do, but was given a workbook and exercise books and I just ploughed through them on my own in the corner. School was awful. I had few friends and struggled massively with social difficulties. I still do.

I managed to go to the GP a few years ago and said I wanted to be referred for autism assessment. She couldn’t work out how to do it. So I gave up. I have a lot of adhd traits so it used all my executive functioning to go. I am incredibly shy and easily embarrassed in person and I absolutely loathe being observed, so approaching a gp about this was really traumatic. I’ve never made it back to talk about referrals and I don’t think I will. I would never say I was autistic or had adhd unless I was formally diagnosed and so I am not.

I still have nightmares, this weeks were all about my surgery. I have incredibly vivid and exhausting dreams, I can recount hours and hours worth. It’s like being in a movie. Not restful.

sorry that was long.

@FurForksSake gentle hugs ❤️

I'm so tired. That is all.

I hear you @FuzzyPuffling .

I have just had a nap and struggling to go and make dinner yet again.

Me too! Went to my mums and Sainsbury's. Then fatigue hit me.

I have completely forgot what it feels like to have 'normal' energy 😭

I have to make dinner in the morning so it just needs chucking in the oven later on. But that works for me.

Lots of supportive hugs to the terminally tired!

I made pizza. It's cooking now. Kneading dough was like a workout.

Well done @MewithME Kneading dough is hard work. I recently learnt that you can make pizza and leave it in the fridge for 24 hours and it doesn't need kneading because time does the work.

enjoy the pizza!

Blimey- impressed. Pizza to me is " straight from Morrisons with a few extra veg on top".

You can also freeze it! We have a pizza oven and sometimes when I have the energy I’ll make lots of balls of dough in my kitchen aid and then freeze them.

Ha ..often is for me but I am finding i can't tolerate UPF as easily these days.

It's packet dough.... Just add water and knead it. It's better than one that costs £10 for two though..and I don't feel ill afterwards.

Crosta and Mollica bases? They are expensive but really good and I don’t think they are upf.

I sometimes make a giant square scone and top that with pizza ingredients. Surprisingly nice!

Yeah they're a good in-between, but not as easy on my tum.

I've had terrible IBS type symptoms this week.

Feeling v blue this evening too. Pain and tiredness and feeling a bit weird about where I ended up in life. Thank you all for being here.

That was our school recipe! Cheese scone pizza. I'd forgotten about that!

Bum. I thought I'd invented something there.

Bless you. Im sorry you're feeling grot. Sending you lots of support and hugs.