Disabled in the district

Sat in the boot area of my motability car, strapped into my wheelchair, which in turn is strapped to the car. My daughter, age 11, has left through the side door and run up the side of a mountain with limestone fossils, surrounded by hills and dales, caverns and narrow roads.

My husband has gone to pay for the car park and then I (being mum and seeing all the dangers) asked him to check on Miss G. As he started heading back towards her she started heading out on a bit of a cliff edge. My insides flipped, hoping she woukd recognise the danger as she edged further, clutching her Teddy. Then she sat down on the grass, waving at us down here in the car park.

My husband decided to head yo after her, just in case. There is a large tree here in the worst possible place for those of us stuck in the car. I lost sight of both of them for quite a time before the reemerged above the tree, around two thirds up the hill.

Then, after refusing to leave the car, Miss A decided it now looked fun and she wanted to join them.

Watching my little seven year old crossing the car park, through the country gate and heading up the rocky hill alone felt all kinds of wrong. But I needn't have worried. She is very physical and in no time she was with my husband and Miss G, posing for photographs which I expect will appear on my screen any moment. I have already had a few of Miss G and the amazing view they have up there.

I, meanwhile, am realising why you Shoukd never leave a dog in the car. I am stuck. I can't open a door or window and there is no one to ask. I don't want to spoil their time up there and have tried banging on the windows to get the only other people near me to help, but they didn't even look up, so have to just wait. (I know it hasn't been done on purpose at all, just no one thought because, well, it hasn't always been our family normal) 

The joys of being disabled 😢

A&E day trip

I wasn't great last weekend but didn't want to go to A&E, so decided to wait until Monday to speak to the GP. On phoning the GP they said to go to A&E.... So I should have done that in the first place really 🙄

I completely underestimated the lengths they go to in order to avoid any patients breaching their time targets and separating red and green zones (those who might have coronavirus and those who probably don't, or don't have any symptoms). I had nothing with me but my phone and a charger so thought I'd record some observations... So here goes 😉💭💭

Sat in a and e by myself in my powerchair.

On entering the automatic doors there is a nurse dressed with a full face visor, face mask, gloves and head covering. She backs away as you enter and asks what has brought you here. You have to tell her from 2 metres away, which is terrible for confidentiality. Because one of my symptoms was shortness of breath she took my temp and chatted to reception to check if I should be sent to the covid side or not. I was allowed through to the reception queue on the non covid side. Whilst I waited in the queue, three patients entered the covid side, given face masks on their way in.

Having heard why the three people in front of me were here and finally made it to the front of the queue, I then had to shout out my name, dob, symptoms and next of kin before being told to discuss my symptoms again with a man sat further around rsceotion

Again because I had mentioned shortness of breath, they were discussing whether or not I should be on the covid side.

I sat in my chair in the waiting area, waiting to be triaged. It wasn't long then before I got called in to see a nurse and a doctor. The nurse took some details, not all of them, then they did my obs, said I need a heart trace

.. Ecg... And to wait in reception again.

I am still here waiting.

I have seen people come here and be sent to urgent care instead, be brought here by ambulance and sent to ambulatory care, little babies taken into covid side and two people come to visit someone in covid resus.

Lots of people come in here, being sent by their gp for an assessment, but then coming to a and e instead of the assessment unit... Which is all the way around the hospital building in main reception.

The nurse on entry duty has cleaned the Vending machine, had a few mins to sit down but that's all. She not only deals with everyone who enters the doors but also the ambulance arrivals here, phoning wards and other units for people to get to the right place, directs patients to the right units from here and phones for porters.

I was called into a second room where there were 2 nurses ready to do an ecg on me. They lifted my bra up to stick the pads on and put some on my arms and legs too. Took my temperature... Again. Then sent me back to the waiting room.

A while later a lady asked me to make my way over to the ambulatory something unit... Go to the traffic lights and turn left, then into main reception.

By the time I had managed to get to main reception, past the road works, over all the crossings and bumps and tried to recognise something on the mass of signs in there I had no idea where I was going.

So I headed for reception who phoned the place they thought it would be, ambulatory emergency care unit. That unit said I hadn't been referred there so reception said it must be amra and to go there. So I headed down into the basement and made for amra. Arriving there I wasn't on their list either. Thankfully the staff were more helpful and spent an age phoning around the hospital only to discover that instead of referring me to the ambulatory emergency care unit, they had discharged me. They got that sorted and gave me a card with the name of the unit written on, along with easy directions.... Left, left, right. When I got there, they didn't have my name still. So I explained the whole saga and they accepted my referral. They had my ecg paperwork here with no name or paperwork attached.

So now it is nearly four hours after I got to the hospital and I have just had three bottles of blood taken. From my hand.

I saw a sign saying there is an hour wait after seeing nurses for bloods and triage to see a doctor. I need a wee but can't go here because the toilet isn't suitable as it is an ambulatory unit. I told the nurses I will hold it in until I leave here, but in reality I don't know if that will be possible for another hour.

My husband has offered to come to the hospital with me but only patients are allowed anywhere so that isn't any good. I am expecting them to tell me everything is OK after all this palaver and a day at the hospital. I joked with the nurses triaging me that the time aat here is a nice break from having 3 children with autism at home not coping well with lock down. Really I woukd obviously rather be at home. Having a wee.

I have seen St John's ambulance bringing patients into hospital, junior doctors working as nurses, a lady with a continuous cough sent here by her gp taken into a private side room incase she has covid because there are lots of false negative results apparently. I hope she was negative because I was sat by her for a good while.

In the time I am sat here I have seen samples been picked up twice. 

Blood results apparently take 90mins. I have been 30mins so far. 

Collection has been made 3 times now. 45mins after my bloods.  Worked out bloods are collected every 15mins. 

I have seen a prisoner being escorted out of the hospital by 5 police officers. I have been escorted by a porter to xray and finally managed to nip into a disabled loo! 

I have had to ask the xray room allocater to help me undress and redress for my chest xray. She had to go put on a face shield, apron and gloves to do it. I am still waiting to see what any of my results are if I need a repeat blood test I will be here until atleast 6.30pm now. The receptionist here had a call from main reception trying to ask if a patient is here in this ward. She just said no and refused to try and look on their computer to find the patient. Charming. 

After an hour of waiting, the Dr finally calls me back in to tell me that I haven't had a heart attack, I haven't had a stroke. Well... I coukd have told her that at 10.30am and not wasted a whole day here picking up god only knows what germs and bugs from other people! Apparently everything is OK. So I will try and get an appointment to see my gp tomorrow or Wednesday to ask about everything that is going on and refuse to be sent to a and e. When you push gently onto my feet or lower legs, you leave dents that stay there for more than 2 minutes. Surely that can't be right? I wake up like that at 38years of age. Literally it is like having feet covered in memory foam, but less comfortable. 

So I have found my way back to reception in the main building, grabbed a lemon drizzle nakd bar and a bottle of coke zero. Only to realise I can't drink the bottle of coke zero because I don't have a straw. It is a miracle I managed to even open the thing at all. I usually ask someone so I don't hurt my arm, but the lady in there didn't seem the kind to ask for any sort of help. Now I am sat waiting for my husband to pick me up. I have a good view through the glass doors, but am not setting off the automatic opening. I am away from anyone, but, so many people keep coming ridiculously close to me to gel their hands. Social distancing people! 

Only a short insight, but the nurses really do work hard with doctors appearing now and then to sign things and ask the odd question. 

#NHS #carers #clapforcarers #coronavirus #observations #covid19 #A&E #chronicillness #thankyou #socialdistancing 

Eating pebbles

They (I always wonder who 'they' are) say you learn something new every day (sometimes useful, sometimes less so) and today has been no exception for me.

I had plans for a relaxing Saturday after the VE Day 75th anniversary celebrations yesterday. At 3.30am yesterday, our two children with PDA decided to declare war on each other, waking the house up. As a direct result, they then both refused to take part in anything VE Day related except eating the (German) frankfurter pittas for our picnic lunch.

The street was fairly busy at lunchtime, with families sitting out the front of their houses, but quiet. So I thought I would put some music on from my phone. Then I quickly realised that wasn't such a great idea as the German lindy hop music started playing!.... Swiftly changed for British and American instead.

I don't think anyone outside our family noticed, or if they did nothing was said (an advantage of having a vacant house next door).

Obviously my son noticed and took great pleasure in teasing me about it for the rest of the day 👋

Miss G made the most of all our planned activities, including a colouring competition (obviously she won), a word search race (she legitimately won) and a word competition to see how many words coukd be made from the letters in the word 'victory'. 

Having finished all of the competitions, demolished lunch and some convincing, we took our dog for a walk in the greenways and valley as a family. 

It has taken us almost a year to discover the greenways and valleys near us, but worth the wait. The only thing missing is a toilet. (I am sure all parents can relate). 

Last night we decided to order tea from our favourite cafe/restaurant. It was their first night doing takeaway during this coronavirus crisis (up until now they have had boxes of various essentials available). Our food arrived with a free bottle of prosecco to make up for our two and a half hour wait. Fast food it was not, but atleast it was as delicious as always. 

So on to today. A planned day of relaxing and not much to do (who has a lot to do in this lock down when they aren't working?) starting with YouTube. I, and the children, am missing being able to be outdoors more, seeing new things and especially animals. So I put on a virtual safari video from Longleat safari Park. No point in watching one we would realistically never see in person. 

Watching the video I learnt two main facts that were completely new to me. 

1.

Ostriches have no teeth (I knew that bit), so in order for their food to be broken down as teeth woukd do, they swallow small pebbles that grind together inside their bodies in place of teeth, breaking the food into smaller pieces. 

(the photo is of an emu not an ostrich because I didn't have one) 

2.

Giraffes sway as they walk because they move both left legs at the same time, then both right legs at the same time, therefore making their stride longer. Only when they run do their legs move as other mammals do. 

With the number of safari parks, zoos, wildlife parks and museums we have been to, these two facts have completely eluded me. There are two more safari videos from Longleat available to watch sometime when I get the chance. Plus millions and millions more about almost everything else too. Full of information (not necessarily fact) both useful and useless. 

Whilst these aren't the everyday facts we might need to survive, they are interesting and show the amount of questions I had never asked myself. 

My head is often full of random questions and wondering, some of which make their way out. 

Podcasts, Cookies and Crab

There are so many things in my head from today that I thought it better to combine them all into one post. So here goes for Podcasts, Cookies and Crab.

(excuse the state of the oven door)

You'll be pleased/relieved to hear the crab and cookies were not one and the same. I have no doubt someone in the world will have tried it, but not for me thankyou.

I can't wait to get my carers back, and a routine for my own life back. My sleep lately has been terrible and the days all seem to be merging into eachother and then into the nights. I am trying my best to keep as busy as I can, to not sleep in the day unless I absolutely have to and to settle down to sleep around the same time, but when you're not tired what can you do?

My youngest is also struggling in a huge way with her sleep. She messaged me on messenger in the early hours this morning (apparerntly the app showed me as being online even though at that time I was just about asleep) with voice messages and gifs getting increasingly and sad because i wasn't answering. It was awful to hear this morning and I felt like a terrible mum, but it was at 1.42am........I have promised to keep my phone on loud at night now and told her to get into my bed for a cwtch anytime she needs it. When I woke around 3am she was curled up on our floor wrapped in her choice of fleecy blanket (insert sad and guilty faces).

Despite all of that, today was the day we had agreed to bake cookies. She had been in my room during the week and seen someone baking chocolate cookies and she wanted to try the same recipe. I made sure we had all the bits we need, was in the kitchen waiting for her but then she decided she wanted to do something else instead. So guess who ended up baking the delicious chocolate chip cookies?........Yep, me and my husband.
I need to bake more of them...I think there are only one or two left already!

All our recipes have to be corn free, gluten free, dairy free, yeast free, soya free and egg free. It can be a challenge at times, but this one worked pretty well.

We used Bob's red mill 1 to 1 baking flour, moo free chocolate, water mixed with gram flour as an egg replacer and vitalite dairy free spread as substitutes for the relevant parts of the recipe and needed a little more moisture than the recipe calls for (this is normal with gluten free baking).

I saw a similar recipe to the one we had seen on the TV in the Sun newspaper yesterday. They had it from fabflour.co.uk

300g plain flour
1/2 tsp bicarbonate of soda
120g salted butter (melted)
225g light brown soft sugar
1 egg
20 squares of milk chocolate

Preheat oven to 180C.
Mix the flour and bicarb in a bowl and put to one side.
Combine melted butter and sugar in a separate bowl. Add egg then add this mixture to the dry mixture.
Bring together to a dough with a wooden spoon.
Divide into 60g balls and place on a baking tray with room inbetween, pushing each ball down gently.
Place in oven for 6minutes.
Remove cookies from oven, press 2 squares of chocolate into each cooke and return to oven for further 6 minutes.
Allow to cool slightly before serving.

In reality.....This was all done in one bowl (what's the point in making extra dirty dishes to wash?). No wooden spoon so I used a fork instead and that worked great. Really? Weigh each ball of dough....I just tried to make them all look about the same size as eachother.Splitting cooking time in two for adding chocolate on the top?...nope, we put the chocolate on top at the beginning (and added some to the dough mix itself) then baked them for 16minutes.
They were barely cooled when half of them got eaten!....so you see the need for more to be baked.

As soon as everyone had eaten a cookie and had a drink, it was time to walk the largest of our dogs (the other two get worn out running around the house and garden bless them....and do go for walks when times are more normal). We have walked her around the local park so many times she usually knows which way we will go next, takes no notice of any of the birds there and happily plods around with us. Today though she seemed in a funny mood. She was reacting to things she doesn't normally care about. This was the most of obvious when she tried to leap at a goose on the edge of the lake and my husband pulled her back just as her body was tipping overbalanced into the lake.
She seemed shocked at that and kept plodding with us for a little more until we had a stop to feed the ducks and geese. At this point she got even worse and tried to chase a goose that was already in the lake. You can guess what happened here....one wet soggy doggy. She leapt in after the goose, all the way under the water with her harness and lead attached and we quickly found out she can swim! (just before she got hauled out by my husband).

We brought a sulking, soggy, sad dog home from her walk and I took the chance to listen to some podcasts whilst she had a shower.
I have a few podcasts I enjoy listening to, depending on my mood. Today I listened to Chris Ramsey and his wife Rosie on their podcast 'Shagged, Married, Annoyed'. I love their podcasts because they are so relatable and funny. They cheer me up and make me chuckle along. Then I tried a new one through Audible called 'Locked Together'. The concept is that two comedians skype/zoom eachother and have a general chat about how things are for them at the moment. I am half way through my second episode of this now and loved it. I am playing catch up though since the first episode was recorded early in the period of lockdown here in the UK.
My other favourite podcasts include 'Invisible, Not Broken', 'This is Not What I Ordered', 'BBC Ouch', 'Woman's Hour', 'My Dad Wrote a Porno' and 'The ME Show'....a varied selection.
I have tried new podcasts from charts but not managed to find any more I particularly enjoy. I like to feel that something is relevant, or atleast makes me laugh. I can't concentrate on things very well so if I feel I can relate to the people on there in any way it helps.

Today, Alexa (amazon's AI device) decided she was not going to let me listen to BBC Ouch. She tried making me listen to many other things, none of them the right podcast. At one point she put something on and refused to stop when I asked her to. Honestly...with three children, three dogs and being married, I don't need attitude from an electrical device that is meant to be helpful! I soon gave up and went for a drink outside in the sun for a short while, until my son asked if we could open the crab yet.

I'll explain...


...yesterday we needed a couple of things from the supermarket so we drove to a couple, looking for a queue that wasn't wrapping around a building in the rain. We ended up at a store starting with M. Whilst looking for our normal foods, I spotted a cooked, whole, vacuum packed red crab! Well....if you know me at all you will know I love the unusual, love to give my children any experiences I can and nothing is excluded from that. We have disected hearts before, examined dead flies, bought owl pellets online....so we bought the crab.

Perhaps this is part of your normal diet, great for you....but we needed youtube.
Instructions on what to do with a cooked red crab.....how to get meat from a red crab. It never ceases to amaze me what you can find on youtube when you need to know something (in a good way too).
I watched a two minute video https://youtu.be/gopHYbida08, made sure it made sense and related to the crab we had in our fridge, then sent the video to our family group on messenger.

Today was the day. My son decided he wanted to try the crab meat and that meant he would have to follow the video. He got the knife, chopping board, scissors, crab and skewer (the video called for a lobster pin.....no idea what that is so we used a skewer), took the first claw off, the legs off and then freaked out. The feel of the crab threw him and all of his bravado left him. My eldest daughter was there (youngest had left in disgust that I would even buy the crab in the first place). She took over where his stomache had left and finished taking the meat out of the shell, legs, claws and body. She thoroughly enjoyed it.
We were all surprised at how hairy a crab is!

I should probably mention, in my children's defence, they all have sensory processing difficulties associated with their autism diagnoses and my son struggles with touch a lot. My eldest daughter has no sense of smell (ever).

It came to eating the crab meat and my son didn't like it! My eldest daughter did, and we had to stop her eating too much of it.

Another great learning experience for them though.

So that has been my day today. How has yours been? Less chaotic? More interesting?
Whatever you have been doing, I hope you are safe.