November 7th – From Music to Musings

1999: Up at 7.15, mum and I sat down stairs drinking tea and milk.  I started ‘playing’ my Teletubbies bin just like a drum and then as a stage.  Mum seemed to prefer the drum version. It was quite nice today so I played in the garden ‘lots’ whilst mummy cut all the plants.  I just can’t understand her, she spends all that time dragging me round garden centres and planting them, just to cut them all down again!  We emptied the sandpit and washed it all down, along with all my garden toys ready for winter.   I ate bacon and beans in my ‘house’ but it wasn’t a very good cafe – I had to ask for my cuppa!  I was very wet from the water and mum was very muddy so we had a lovely hot bath mid-afternoon.  We went to Nanny and Pa’s and stayed for tea.  Afterwards Nanny took me home as mummy’s gone out again.  Once home we discovered that mum had accidentally turned the heating off and the house was freezing.  Not that I minded much as it meant I got a cuddle, under the blanket, with Nanny on the settee.

2019: So glad I have a recovery day today.   I literally feel so exhausted all the time since I’ve been having my infusions and trying to balance and juggle life is so tough at the moment.  Its so hard to get the motivation when you are not all there. I think this is where my forgetfulness comes in as well as brain fog. I’ve always been forgetful but lately its just getting worse and worse. I think when I struggle with my mental health, I have so much anxiety that my brain just cuts out anything that’s actually important

.#children #parents #gardening #crohns #mentalhealth #infusions #anxiety #music 


November 6th – Santa For Christmas?

1999:  Mummy had her nails done again his morning, which was all a bit boring.  When she was finished we headed straight for Aunty Eesa’s as I’d decided I didn’t want to go swimming.  We had lunch and all played in the garden which was great fun.  The only problem today is that somehow, someone keeps wetting my trousers.  We went to Asda where we saw Nanny demonstrating Christmas cake – yum, yum.  Later, once home, Nanny called round for a cup of tea and afterwards mummy and I had some pasta and then my bath.  I fell asleep on the settee just as a lady called Leah came in and the next I knew it was 1.30, I was in my bed, but rudely awoken by loud voices downstairs.  Bloomin’ adults, I wish they’d learn to keep the noise down.  I bet mum’s been out with that Martel guy again!  Anyway, I was allowed down for my bottle of milk and then back to bed and sleep.

2019: Infusion day. 3rd loading dose in 5 weeks and I have gained another 5 kilo = 98 kg! Not sure if this is the stopping smoking and craving food or the infusions but perhaps I could get a part time job as Santa this year?! Still its better than being underweight and looking like a skeleton. Generally I’m feeling good, just tired from the loading doses, but I think I have found what is good for me treatment wise

#crohns #children #parents #granparents #christmas #infiximab #infusions #pottytraining 

November 5th – Smoke and Fireworks

1999:  Had a bath and got downstairs 5 minutes into play bus.  Brought a lovely letter home from play school – with my name in it.  I came top of the sponsor colours – thanks to Nan!  Mum was very proud.  Mum’s smoking again and went out in the garden for a cigarette this evening.  It was dark and there were fireworks going off and I was very frightened for her.  I said “no mummy not out there.  Fireworks hurt you”.  After much reassurance through the glass of the back door, I was okay by which time she’d finished her cigarette and was coming back in.  Went to the toilet then pooed my pants so had to have a shower and fell asleep cuddling mum on the sofa.

2019: Pleased to say I have bought a new vape and have not smoked for a couple of weeks now.  I know it’s bad for Crohn’s so gonna try and stick with it. On a late today so was able to sit my H&S environmental test for my CSCS card but didn’t pass so have to resit.

#kids #parents #Playschool #Fireworks #smoking #building

November 4th – Its All a Mix UP!

1999: Up at seven and we were lazy  again.  I reminded mummy of her pottery car and plant that I bought her yesterday with my own pennies and she says it’s lovely and very special.  Toddlers this morning but when Edon went to get her coffee I cried and decided to cling – I didn’t want to risk her going anywhere without me again.  Have been in a lovely mood all day, which seemed to make the biguns cheerful.  I gave mummy a big hug when she came to collect me and got nicely into the car without any fuss.  We had pasta for tea and then cuddled up on the settee with strawberry milk!  I was starting to drop off when I saw Uncle Terry on an advert for a show – I was very excited, but fell asleep cuddling mum a while later.

2019: Off today for infusions – only to find its not today – its Wednesday. Not a great start to the week as all planned to do my health and safety training for working on site tomorrow at midday but now have to go into work today and tomorrow and throw £21 down the drain and reschedule. Then need to take Wednesday and Thursday off instead for infusions and recovery with a formal absence meeting already pending and redundancies. Just hope they take anxiety, depression and Crohn’s as the disabilities they are and not random sickness ……

#children #parents #childminders #crohns #mentalhealth #infliximab #toddlers #cuddles

October 31st – Halloween Birthday

1999:  We were up at 5.45, bumbled around and then got ready to go over the town.  We were delayed slightly when Al reminded mummy that the clocks went back last night and the shops wouldn’t actually be open yet.  So we bumbled around some more.  And then went shopping and I got my face painted and scared everyone on the way home. Had a couple of hours nap this afternoon so missed Nanny and Pa when they visited but they left me a Halloween mask and T shirt.  Mum and I got dressed up this evening to go to Uncle Telly’s birthday party but we couldn’t find my mask.  Mum found it eventually – behind my new house in the garden.  I took my microphone to sing happy birthday and as a birthday bonus, I got the rr’s and called him Uncle Terry.  I got to blow out the cake candles three times.  We all had a great time and we didn’t get in until 11.00!  Needless to say, it wasn’t long before I was asleep – nor mummy for that matter.

2019: No parties today but still Terrys birthday so messaged him to wish him a good one. Day off again today so time spent trying to get a loan to also do my SIA badge so I can work the doors in Norwich of a weekend. I can only get 49.9% with a guarantor! Back to the Sainsburys card then but mum needs to order another one as I misplaced her last one – in her car but she only found it once she cancelled it!

#children #parents #familiy #halloween #birthdays #loans #money


October 26th From Breakdowns to Breakthroughs

1999: Five o clock start this morning but played in my room until mum got up at six.  We did really well for time this morning and it would have continued if mummy hadn’t been so silly.  We turned out of our road when I had to say “mummy, my belt not on”.  She pulled over, strapped me in, went to pull away and stalled the car.  She then tried to start it over and over until it stunk of petrol.  We had to walk back home, get Al up (who had been working all night) and eventually we were back on the road.  When mum picked me up tonight I looked for sweeties.  She said she hadn’t bought me any but that she had bought me a present to which I said “oh, thank you mummy” – until I saw it – it was a boring old coat and a pair of army pyjamas.  Didn’t want tea tonight as decided to convince myself it was horrible before I’d even tried it.  I wrapped up warm and played in the garden – mending, building and working.

2019: No overtime for me today after all, which was just as well as yesterday was pay day. Nice date night at Bella and then out for a few bevvies and dancing. Great night but feeling a bit tired today. Missed the rugby as ad to drop Zof off for a nail course but mum has recorded it. Not that I could avoid hearing we are through to the world cup final as its everywhere!

#kids #parents #cars #work #BellaItalia #Datenight #Rugby #WorldCup

October 24th – Rugby Muddy Bakes

1999:  I awoke in the early hours to find mummy asleep on the bathroom floor!  It frightened me a bit and I started to cry which woke her up.  She took me to her bed but I didn’t like that much either because Al was there and snoring very loudly, so mum and I ended up in my bed!  Al made me a bacon sandwich for breakfast.  When mummy got up we went to see Nanny and then mum went to see Bomper.  We had egg and bacon for lunch and when mummy came to collect me she had to wait while Pa and I made some bread.  Once home I played in the garden and got very very muddy and ended up in the bath before tea.

2019: Used to love baking with Pa. He had a bread maker and I used to sit on the kitchen side watching the mixture go round and round. Although I love cooking, I don’t really do much baking – unless you can count packet cake mix?! Belatedly watched the England v Australia highlights – Watts interception was insane  as was the grubber kick. Going to miss England v All Blacks on Saturday as have put down to work overtime.  Mum’s worried I’m going to tire myself out but my thinking is I’m tired either way, so might as well get paid for it

#mentalhealth #crohns #work #kids #parents #grandparents #Rugby #cooking #baking