Caterpillar & Cloud Spotting.

Recently, we all went for a walk with our dog Poppy. My reasons for going out were for fresh air, a change of scenery and to take photographs of interesting finds.

Along our walk we came across many interesting plants from purple grasses to the dying thistles. We were also fortunate enough to spot a few insects in front of my wheels. I wasn’t quick enough to capture them all, but here are a few photos from the walk we had that sparked my mind off.

We have seen a lot of these caterpillars over the years. With loving horses, there is inevitably a lot of ragwort to be moved out. The ragwort seems to be their favourite place. I had never thought about what they metamorphosed into before now. It turns out they are the cinnabar moth caterpillar. On our first visit to this same area, Miss A spotted a cinnabar moth hiding from the rain.

Lots of information can be found about their habitat, and the moth they become on the Wildlife trust website.

A little further along the path I was brought to a stop again. At first I had thought there was a twig on the path, but then it moved. As I got closer, I could clearly see it was a caterpillar wiggling its way across the path to safety. It was massive compared to the cinnabar caterpillar, and it turns out it is an elephant hawk moth caterpillar. I have never seen one of these moths, but they look very pretty in the photos here.

As we continued on, we reached the small waterfall area I had wanted to show the children. When I was last there it had been a sunny, warm day and there were children playing in the water. This was not a day to do that, but it was still beautiful.

The path is a circular walk around a mound with a viewing point on the peak. I have ventured up there once, but will not do so again. The paths are not made for a wheelchair, but the view from up there included this area with the waterfall, and the fishing lake it flows down to. This point is around a quarter of the walk. Continuing from there, slightly uphill the path continued with trees on each side. On the left of the path were lower plants with higher trees to our right. I was so surprised to see this sight, I called everyone over to see. I had never seen so many beetles in one spot before, and so much destruction to one plant. On looking them up I found they are Alder leaf beetles. Along the side of the path were plant after plant, all covered in these shiny blue beetles, munching away merrily, leaves peppered with holes all over. From looking this up on the RHS it seems that this doesn’t actually harm the plant.

Continuing from here, we rounded the corner to the last half of the walk which let us view the old colliery building, the path up to the viewing point and a landscaped area between the two.

As I waited for the others to return, I tried spotting more insects and flowers, but also remembered that several years ago, we took the children with us and camped over at a literature festival in the Welsh countryside. It was held at a national trust house and grounds, filled with tents housing authors, workshops and refreshments. One of the talks we attended was by a man who had started a cloud appreciation society for a bit of fun. He had been amazed at how popular it had become and was there to encourage us all to look up and notice what can be found above us (mouths firmly closed). Ever since, we have, as a family, looked to the skies and commented on the shapes, faces and animals we can spot up there in nature’s lava lamp. I think this looks like a stereotypical UFO with the ring in the centre as the light. Hubby thinks it looks more like a snail. What do you see?

I returned to the starting spot, waiting for the loud return of the four children, hubby and Poppy. Long grasses line the path and mark the start of the decline to a picturesque but inaccessible stream. These last two photos, I think are interesting, not only because they show the grasses as being huge, but also because they were taken in the same place, consecutively, yet look so different. It makes me think of the instagram photos you see of smiling children, all looking at the camera at the same timer with clean faces and no debris surrounding them, or the perfectly posed shots showing no fat, rolls or blemishes. That simply isn’t real life. Reality has its imperfections and that is what makes life. Which of the two do you think would make the instagram cut?

Birthdays, autism, and PDA

 

What a countdown we have had this year! 

Waiting is not Miss A's strength by any stretch of the imagination. She finds it hard to wait for dinner to be cooked, in a queue, for her turn and for anything, ever. We accept that and work with her. It is not for want of trying. Believe me, we have tried a lot over the years. She comes over as being a spoilt child to other people because there is no obvious outward sign of her difficulties. I find that upsetting and often wish people wouldn't just assume, but I suppose we all make assumptions about people. It is how we act on those that can make the difference.

I haven't actually told any of her friends that she has autism, or any other difficulties, but they seem to just accept her as she is. A few nights ago there were electrical storms, and one of her older friends called over to give her a hug and help her cope with everything.

When it comes to sharing, she is getting better with her friends, but out and about, when she has to wait to share a turn with someone she isn't too great.

We always have countdowns to big days or events, such as holidays, special days out, birthdays and christmas. Thankfully you can ask Alexa how many days there are until a specific date so I don't have to work it out anymore and keep count. I used to have a note on my phones with the days counting down for her. 

This year Miss A turned eight. Years always seem to fly by when it comes to birthdays, but this year seems to have gone exceptionally fast. Perhaps it is the lockdown and moving house just before her 7th birthday, or how busy we have all been, i don't know why, but looking at the timeline hop pictures from previous years on facebook I couldn't believe how quickly she has grown up to this age, and how much she has changed in a year.

In the run up to her birthday she always gets extremely excited. She can't cope with the excitement and spends the last week or two on the edge of a meltdown. This year has been no different. Because we know how much she struggles, we try to keep her distracted usually. This has been more tricky this syear with the restrictions and concerns over Covid-19. 

We took a trip to Gulliver's resort near Rotherham for a couple of days (see my blog post here), allowed a lot of sleepovers and time playing with her friends up until the last five days or so, had the hot tub going, got her an indoor swing and generally tried to keep her busy and distracted. The electrical storms a few days before the big day didn't help things, but it finally arrived yesterday. She is now eight years old.

We normally give the children a choice between a day out, having friends over or a party. They can't cope withthe pressure of a party, and I can't cope with the concern over whether people will come or not (parents of children with autism or other additional needs or disabilities I am sure you can relate). I always try to lead them towards one of the other options instead, so, this year she had friends over. 

Because my son doesn't live here full time at the moment, we have repurposed his bedroom as a chillout space where the girls can relax and get away from other distractions when needed. It is also used for sleepovers, and has come in useful several times already. When Miss A can't sleep in her own bed (for multiple reasons), she sleeps in this room. She doesn't sleep on the bed (demand), she takes blankets in with her and sleeps on the floor instead. 

I don't know if it is because her bedroom is too busy, because her bed is a demand, because she has always had issues with sleep, or another reason entirely that she can't tell us as yet. I have looked into recommendations for a bedroom for a child with similar difficulties to Miss A, but none of them would work for her. She wouldn't be able to live in a minimalistic room and the rest of our home would be covered in her things. Sharing a room with Miss G is a big no-no. We tried that through necessity and it did not work at all. Both of them need their own space and have different needs when it comes to their space. Miss G has other reasons for needing her own room too. So we make do as best we can with the room that works for her (whilst trying to gently persuade her to let us help tidy it up, sort through her toys etc. ). She has black out blinds that can be completely removed in the day time and stuck up in the nights. We have as much of a bedtime routine as is possible for a child with PDA. She has a large bed so she can starfish/worm/wriggle around in the night without falling out of the bed, one of our cats often joins her in there at night too. She has blankets for warmth and a fan to cool down by. 

She invited five girls in total to her birthday slumber party, and all of them showed up. We had chatted about what she wanted to happen and when, so I knew what she was expecting. As soon as everyone had arrived I ordered a Pizza Hut delivery for them all (two giant pizzas and two gluten free, cheese free pizzas) plus hubby got chips from the local chipshop to accompany the pizza (far cheaper that way). They all had ice cream for afters and a table full of activities to be getting on with as and when they chose, plus the trampolines and swings.

On arrival, each girl was given their party bag with an eye mask, lucky coin, positive cards, glow sticks, hair chalk, drink and snacks. 

They all chalked eachother's hair, except for one girl who had her arms and face chalked instead. They painted their nails and tried to get the terrible nail foils to work (useless). Rocks were painted, necklaces and bracelets made with beads, tattoos drawn using a toy tattoo pen (which I think is brilliantly realistic) and lots of fun had.

There was a little bit of awkwardness with one friend who was from a different place to her other friends, so they didn't know eachother all that well. A quick revisit from Mum, cuddly toy and reassurance helped there. Miss A seems to have two friends she spends most of her time with. It seemed that they both felt it when they were together and sleeping arrangements had to be made. When there is one for a sleepover, they share her bed with her, so with them both there I supposee one felt displaced. Miss G led some 'get to kjnow you' games in the chill-out room and it all got easier. By the morning you wouldn't know there had been any awkwardness at all. 

I sang Happy Birthday to Miss A at midnight, at the start of her birthday. She was sat up in her bed, chatting with two of her friends. I could still hear they were awake at 2am. Then at 4-5am they came downstairs. I pretended to be asleep a couple of times when our bedroom door was opened, hoping they might go back to bed. Eventually, at 8am we gave up and all got up. It turned oiut that, after insisting all her friends got up and came downstairs early, Miss A had then fallen asleep on the sofa. Typical.

After opening all her cards and gifts, she had her birthday cake, spent time playing with her friends outside and on the indoor swing and chose a Mc Donalds for lunch.

We only have two spare seats in our car, so Miss A and Miss G took their best friends to McDonalds, then over to a toy store to spend her birthday money (I told you she doesn't like to wait), before eventually heading back home. She was asleep in the car on the way home- no surprises there. 

I know Miss G's best friend was asleep before we had even left her street and both hubby and I had to sleep when we got home too.

After all of that, she had another sleepover last night. Thankfully they both slept though- I think they needed it!

The main thing for us is that the children are happy and healthy. She was definitely happy, and the pizza and Mc Donalds were a treat.

As for finding a bit of calm and peace amongst the crazineses that has been the past fortnight?- we have had a lot of barbecues, spent time in the garden having a fire, watching the flames and taking deep breathes before returning to the hurricane. 

I have also been looking after the garden plants, including this Foxglove that Miss G chose. There are always bumblebees flitting from flower to flower here and on the French lavender. I find it a calming place to sit and relax. 

I have also found myself a place to relax indoors now, away from my bed. It means shutting off the indoor swing, so I can sit behind that door and use the family computer. I have created my own Minecraft world where everything is calm, peaceful, colourful, fair and makes sense (well, mostly). I even decided to mine for gold (like they do on Gold Rush, a TV programme me and Hubby have been watching). 

Apart from those escapes, life is still pretty hectic and full on. Between our two girls and their different needs, lifestyles and personalities, we also have their friends who live locally, the chaos that follows Miss A and pre-teen hormones to consider. 

But one of their friends did manage to capture this awesome photo for me the other night- the calm before the storms

Heatwave

 All over the news for the past few days they have been announcing there will be a heatwave. Apparently this one will last more than 24hours too.

Today is the first official day of said heatwave, although we have been living outside for most of the past week, hiding under umbrellas in the humid weather during the inevitable showers.

We have managed to plant a few of our potted plants into the garden now and are trying to grow a mint offcut so we can have two mint plants in the garden.

Without a doubt, the best purchase we have made recently has been the BBQ. We used to have charcoal ones that took so long we always gave up. This time we went for a gas version and we will never look back. It is just like cooking inside except the unique barbecue smell floats around the garden, making all the neighbours salivate.

We also have our inflatable hot tub up and running for our girls and us, but it is mostly occupied by our daughters and their friends. A couple I suspect are only here because of the hot tub, but as long as everyone is safe and happy I don't mind. When things have gone too far then we have had to step in and stop people calling over, but usually it all works out well.

Now that I can safely access the rear garden and spend time with my family outdoors, life feels more free. Before I felt as if that part of ourhome was out of bounbds for me and that was very frustrating. We have a lovely selection of potted plants along the side of our home now, near the door i can use to enter and exit the house. I love to sit out there, or at the corner of the ramp and watch the bumblebees and butterflies in the garden.

There is nothing better, on a warm sunny day than sitting in the warmth with a gin and lemonade or a glass of wine, a book and hearing the sound of children having a good time whilst smelling the tea cooking on the BBQ.

I have such a selection of books to read I can't decide where to start most days. I am currently reading a few books. I am reading:

The Runaway Daughter by Joanna Rees- a large print fictgional novel about a girl who escapes her previous life and begins a new life with a new name in London.

PDA Paradox by Harry Thompson- A book about PDA by someone who actually has the PDA diagnosis and can offer an insight into day to day problems from the inside.

Have You Eaten Grandma? by Gyles Brandreth. Strictly a book about grammar and the use of the English language, but full of comedy and quips.

I keep changing between the three, depending on my mood and surroundings. I need to concentrate more for some than others and am reluctant to take the library's book out and about in case I leave it somewhere (quite likely knowing my awful memory).

Having our girls and their friends happy and playing together, doing role plays around Undertale and FNAF makes our day. Quite often it comes to around 9pm and the girls are asking for sleepovers, negotiating with us over where people will sleep, if people will sleep and times to get up the next day. We love it and know it is what Miss G wanted in our other homes but couldn't do because of her own difficulties and the children in the locations we were in.

The BBQ also seems to bring people together. We have a lot of veggies on ours because I am not keen on meat, but it is great to see the children trying new things for the first time. One girl shocked me when she said she doesn't get food like this usually. They just have chips, sausages and food like that with healthy food on a friday. One other girls thanked us for inviting her over, saying it was the first time she had ever been over someone else's house.

I went rogue the other day and purchased a telescopic flag pole and a fish wind sock for the garden, along with festival style ground flags. The fish makes me smile when I see it 'swimming' around in the breeze out there. I just hope it doesn't annoy the neighbours too much.

Gulliver's Valley

Our first trip to Gulliver's was last month. We had a Wowcher code for a family of four to enter any of the Gulliver's parks of our choice this season. I had been nervous about whether we would get to use it with the lockdown and Covid-19. When I saw they were reopened we were off that same month.

We went to Matlock Bath for our first experience of Gulliver's. I had looked it up online, as I always do, looking for accessibility information for myself in the powerchair and also for my daughters who both have autism.

There seemed to be no problems, if anything people were saying how positive an experience Gulliver's is for people on the autistic spectrum. So we went ahead with our day out with no concerns. Until we arrived. 

There were no disabled car park spaces near the entrance, but as the car park was gravel based i assumed it was because people could leave their own distances perhaps. 

Then we descended to the main entrance area and a member of staff came over to speak to me. She told me the park was very steep and people in mobility scooters and electric wheelchairs often struggle to ascend and descend the walkways. She told me to go ahead and try it if I was happy to and that we could always borrow a manual wheelchair or I may wish to not even enter the park due to the inclines. 

There was no chance we could turn around and leave with the girls. The meltdowns would havew been epic. I went ahead, tried the hills and although it was scary and gave me very sore legs the next day, the walkways were all just about accessible for me. 

I think it is because my powerchair has six main wheels, giving me extra stability on hills, ideal for Gulliver's matlock Bath.

The day we had there was amazing. The rides were all perfect for the girls and Hubby enjoyed too.

As with anything they enjoy, the girls wanted to go back again. I wasn't in a particular rush to deal with the muscle pains in my legs again so soon, so looked around at the other parks in the UK. There are a good few of them to choose from. One seemed to be practically brand new. 

Thinking about my wheelchair and the toilets, I hoped the new site would have a changing places toilet included in their plans before their recent build. As it was a little further to drive for the day, I looked at their accommodation too. 

We have never stayed on a theme park before so it was a really special treat for Miss G and Miss A. It also made the trip easier for Hubby, splitting the driving over a couple of days.

We had the choice of an accessible princess room or an accessible lodge (static caravan). The princess room was marginally cheaper (because it sleeps 5 compared to the 6 in a lodge). The bedrooms in the princess room looked adorable, especially the children's room, so I went ahead and booked it for a couple of weeks after our first trip.

I am terrible at keeping secrets and surprises like this so told the girls almost straight away. They were so excited, Miss A was straight onto a daily countdown and was packed a couple of days before we left.

We arrived at Gulliver's Valley resort for check-in at 4pm, found the check-in area and were then met by a princess. She tried talking to the children but they were so overwhelmed with everything they were practically silent. In the car, Miss A had been super excited and hadn't stopped talking about the park and bedroom (except to sleep). The difference in her was amazing. 

We were in Cinderella 1. An accessible room that sleeps up to five people, two adults and up to three children.

The girls ran straight in and explored the room whilst I waited for them to calm down enough for me to safely enter without running either of them over.

The threshold into the room was a bit rough- a bump down into the room. There was a pretty room on the right for the children, hidden by a curtain screen, with cut out windows and their own lights by their bunk beds. It was very cute and sweetly done. Each bed had a Gulliver's night cap packaged on the duvet for them too.

Further down the short corridor was the coat hook, set at average person height, not accessible for me. Then the accessible bathroom. 

The bathroom had been set up as almost a wet room. There were grab rails for the sink, shower and toilet, but things like a shower stool/chair, toilet raiser and accessible sink were lacking. I couldn't get my wheelchair close enough to the high sink to use it because the toilet was in the way.

Ahead from the bathroom door was a luggage rack for any suitcases and a portable clothes rail with a few hangers. These were blocking my entry into the area where our bed was so hubby put them outside on the decking area. 

Past those obstacles and I was into the area with our bed. There wasn't enough space for me to get down the side of the bed in my chair, so Hubby had to rearrange the bedroom furniture to widen the space between the bathroom and bed. It meant we were on the wrong sides of the bed, but atleast I could get into and out of bed.

There was an under-counter fridge for the breakfasts. This was great for us to store our almond milk in, but not so great because it wasn't accessible for me from my wheelchair at all. I had the same problem with the lamps. They were very nice lamps that fitted perfectly with the room design, but the foot switches don't work when you are in a wheelchair.

As well as the room, we also had our own little decking area outside. There were a couple of metal chairs out there and trellis separating it from next door's area. The door leading to outside wasn't accessible at all. There was a huge drop down to the decking and again no ramp from the decking out. 

It felt as if the 'accessible ' label had been granted purely because there were grab rails in the bathroom and no cubicle around the shower. 

I was determined not to let it put a dampener on things for us all though. We did our best to manage with what was there and not make a fuss.

We were pleasantly surprised to find out there was evening entertainment for guests of the park, including bingo, party dances and a singer. After we finished our Pizza Hut tea we went down to the entertainment to join in. We were told at the end that we could also play indoor mini/crazy golf and al guests got early access to the Dragon's Lair giant bouncy castle and climbing walls in the morning. 

I feel the information for guests staying overnight needs to be clearer. Maybe a leaflet handed out on check-in stating what is available and when. We didn't have a clue what we could and couldn't do and only found out by repeatedly asking. 

Gulliver's Valley theme park is excellent for children with autism though. A lady at the bouncy castle in the morning told me about yellow bands we could get from main reception that clearly showed the children were exempt from wearing face masks so we didn't have to keep telling every ride operator. Then a mother nearby overheard and came to speak to me. Her son works at Gulliver's so she knew what they could do for children with disabilities, including autism. If you take proof that they cannot queue to main reception, you can have up to ten ride passes that allow you (up to 4 people per pass) to skip the queue for a ride. Miss G is OK at waiting in a queue but Miss A is a nightmare. She simply cannot wait for anything, so these passes were a godsend for us. 

In the morning, when the park was filling up, we headed for the furthest area first and worked our way back towards Lilliput lane for lunch. Most people seemed to be doing the opposite, so the queues weren't too bad. After lunch, we had 11 rides left in total that the girls hadn't been on at all, so the ride tokens were used for the remaining rides they chose. 

Amazingly, the pirate ship turned out to be a favourite for Miss G- she usually hates anything fast or that moves too much. Her face was a picture on there with a huge grin.

Miss A is more of an adrenalin junkie and loved the water rides the most, as well as the drop towers.

By the end of the day they had been on everything they wanted to and on their favourites more than once. It was time to get a slush puppy drink, 100g sweets and head home with our new cuddly Gully, T-Rex and Gilly, with a special wave for Miss A from Gilly as we left.

I can't wait to go back, especially when their expansion plans come true and their accessible area is built. I hope it is truly accessible and that they consult a wheelchair user before building.

We are definately a family of Gulliver's fans.

The eyetest

Today was the day- eye test day.

I have been putting it off for a good while, unsure if or how it would be possible in a wheelchair, but the deterioration in my sight and the increased sensitivity to light meant I knew I needed to go.

On entering the Specsavers branch for my eyetest, my husband and girls were stopped from coming with me. My husband is my carer and we can't really leave our girls unsupervised outside anywhere. So I had to go in alone. There were no squares left on the floor for me to wait in the waiting area, so I was directed to park in the centre of the shop, facing the doors. 

I haven't had a panic attack for almost eight years, but sitting there in my powerchair, in the centre of the opticians, facing the doors, with the staff discussing what to do with the wheelchair and how to get the wheelchair in for the pretest tests I could feel the same familiar rumblings in my body. This was so scary I texted my husband to let him know. I know it was made worse because I was also there alone.

I always struggle to be alone in a room with a man I don't know and do everything I can to avoid it. But the optician at this branch was male. He was talkiong with other menbers of staff about how to move the machines around in the pretest area so the wheelchair could fit in. I assumed they also wanted me in the wheelchair, but they seemed to have forgotten that: 

1. Everyone in the building could hear them, including me and 

2. There is a person in the wheelchair who is there as a customer.

As my family were turned away to wait in the car park, we were told I would be around 30minutes. 

I was taken in for the pretests fairly promptly and it was simple enough for me to undo my seatbelt and stretch over for one machine for air to be puffed into each eye, then to the other side for the second one where I was meant to be looking at a light but there weasn't one until the fourth attempt. My neck has been hurting as a result of the stretching, but it was a risk worth taking.

After that I was directed to return to the, now empty, waiting area. I watched as people turned up for their eyetests on time and were told there were too many people in the building for them to be allowed in. Understandably some weren't happy with that and being told to wait outside. It was definately a case of those who shout loudest get seen first. 

The part that most confused me was the set up of the store. They had social distancing markers, laid out as squares, all over the building. They had hand sanitiser on entry and people (other than exemptions) had to wear a face mask. But they paid no attention to the fact that people from the same household would be inside the same square. I really needed my husband with me, but he wasn't allowed (I am fairly sure I could have kicked up a stink about not being allowed a carer with me but just wanted an eyetest done quickly). Yet there was a family of two parents and a daughter when I was looking for new frames, a couple in the waiting area and three more families of three during my (long) time there.

In order to have my eye test, they had to remove the chair from the optician's room. Presumably that is why, instead of being just 30minutes, I was 1hours and 45minutes in that building. 

Yes, you read that correctly. I was in there for 105minutes. The whole time there were two autistic girls waiting for mne in the car park with my husband. Can you imagine?

I eventually got in for my eye test and reversed into place. The man who did my test had full PPE on and perhaps this covered his personality and chair-side manner. I was already on edge because I was in a room with a man I didn't know, on my own. The fact that he only spoke to me to ask blunt questions, only to not listen to my answers fully made it even more awkward for me. 

I have had lots and lots of eye tests in my life. I know the drill. There is the letter line to read, cover each eye, one at a time to see what size you can read. Then the same with their ridiculous metal glasses on with those little lenses. Does it look clearer with or without this, or the same? This is done a few times on each eye. Then there is usually a red and green light to look at and see which is clearer, a circle of black dots and a central dot and they see if that is clear. They look inside your eyes with a bright light and a magnifier and then that's pretty much it over.

Today I didn't have the red/green lights, didn't have the circle of black dots and was very rushed throughout. The outcome was that apparently, for the first time in my entire life, the prescription has decreased slightly. I am very suspicious of that finding. At one point he asked me to read a line with my weakest eye. It was just a huge blur on the screen but when i told him that, his response was 'but you can read it with your glasses on'. Why would anyone lie about being able to see something? The thing he was asking me to read literally looked like a child had scribbled on the screen. Yes, I could read it with my glasses on, but surely that means he has made an error somewhere in the metal glasses and lensess on my face. We shall see.

His advice on the issues I have with light sensitivity (migraines brought on by any amount of bright light, wearing MigraLens overglasses most of the time, using screens over my computer screen) is to have tinted lenses. When I asked if they filter light, he said no. So I fail to see how they would help me.

His advice on the fact that I find reading difficult because the words get blurry and movearound on the page was to take regular breaks. I told him i am reading large print books to prevent the issue but suppose he didn't hear that part.

When it came to picking a frame out I struggled massively. It is the worst part for me. You take off your glasses that you can see through, to try on a pair you can't see through and then have to make a decision on which ones to purchase based on other people's opinions and the blurred face you can vaguely see in the mirror. 

I decided to ring my husband and ask him to come in to help me. Partly to help me choose, but also because I needed him to pay for them and to reach those higher up for me. They only just let him come in to help me, telling him he would havew to loeave if other people came in. If that had happened we would have both left.How do they expect someone in a wheelchair to be able to reach glasses down to try on unaided? I had a tray precariously balanced on my lap to put any glasses in that I tried on (so they could be cleaned before being returned to the shelf). Plus I had the prescription paper and my phone on my lap, along with my lanyard stating I am exempt from wearing a face mask. How was I meant to find a hand to get any frames?

I did manage to try on a couple whilstthetray was empty, and take a selfie before then looking at the blurred selfie with my glasses on in order to make any decisions.

I didn't purchase either of those in these photos. In typical adult shopping style I ended up buying the first ones I had seen whilst waiting for the family to vacate the two squares by the ladies glasses. Hubby said they looked ok too so that'll do me. They ordered the right lenses in for me (I can't have the newly thinned and lightweight ones because I feel like I'm either very drunk or stuck in a fishbowl) so have to order the older version of thinned lenses. Of course, in those lenses I couldn't have any tinting anyway. 

I have a week or so to wait to see if they got the prescription correct, if the glasses fit and if the lenses are the right type. 

By the time we got back to the car the girls were so fed up, asking how long I'd been in there for I decided we should all have an ice lolly from the frozen food store nearby on our way home. That, and the promise of a BBQ for tea seemed to lighten the mood all round.

I don't understand how it took so long for me today. Surely there is no reason why an eye test should take 105minutes from start to finish? If they all took that long then only four people would have their eyes tested a day by an optician there. That would be awful business.

My two girls had their eyes tested this morning at a smaller local opticians. They were both in and out in the time it took me today. I wish their premises were larger so I could also go there, but sadly, as with many of the businesses around here, it just isn't accessible for me.

I suppose the lesson is- if you are a wheelchair user, strike half a day out for an eye test.

What do you see?

On our last walk outdoors we visited a local garden that has reopened to the public following closure due to coronavirus. Outdoor attractions seem to have the current advantage with the pandemic and rules over face masks. I certainly feel safer going outdoors than indoors anywhere at the moment, regardless of how much PPE people are covered in.

Things were slightly different to pre-covid19, we had to pre book before arriving at our designated time slot and then social distancing was advised throughout the area, although not always adhered to. There were arrows on the ground in an attempt at a one way system and most of the park area was closed for the children. Nothing felt awkward or over done.

We took hundreds of photographs along the way of beautiful plants, fairies, water birds and wooden sculptures. Here are just a couple of examples:

Not even the ferocious mosquitoes and gnats could put us off hiding under a tree to have our sandwiches, crisps and warm drinks whilst overlooking the lake and watching others, sitting at tables trying to pretend the rain wasn’t bothering them. 

Towards the end of our time there we meandered through the flower gardens where there are maze-like paths through different coloured plants. Many were so overgrown I had no chance of getting my wheelchair through them, but Miss G was an excellent assistant when it came to getting photographs of flowers out of my reach.

One particular area caught my attention. There was a bush full of these flowers (see above). They were in various stages of bloom and reminded me of dandelion clocks. (that reminds me- I must look into whether a dandelion clock becomes a yellow dandelion flower).

Each flower was protected by the seed ball which then peeled open to further its species, revealing this awesome sight. Seeing the petals curled up like this reminded me of nests, mother animals creating a safe and sheltered environment for their young, scaring off predators or interfering guests (don’t pretend you don’t understand that one). The bold and uninviting looking ‘spikes’ to keep potential danger away until they are ready to fend for themselves and accept visitors not dissimilar to a bitch growling, a snake hissing or a mother ignoring the front door and telephone.

It also made me think of the safety people feel within their own cocoon, be that alone or with friends and/or family. When the shit hits the fan, we all want to retreat to that cocoon of safety where we can count on support and rest to recuperate, gain strength and emerge when we are ready. 

I was brought up to hide the pieces of broken up shit under the legs of the fan, to keep it all inside and always think about what the outside perception would be. The favourite sentences uttered would be “What will people think?” and “Oh, it can’t be that bad really...it always happens to you doesn’t it" in a condescending, disbelieving tone.

I learned very young to not bother trying to seek support within the family home, to keep everything hidden and try my best to just carry on. As I have navigated through a rough and bumpy life i have come to see that is a very unhealthy way of trying to manage problems, and i do not recommend it. It is very difficult to undo years of being told one way of coping though. The one person I could go to sadly passed away 12 years ago now. I have a good friend who is feeling this pain now after suddenly losing her safety net too. There is no age limit on how this can have a devastating effect on us, but asa with everythin in life, it is how we manage to get through and cope with everything that is thown at us that makes us stronger. (I keep telling myself that- maybe one day it will work haha). As a family unit we are alone in the world. We have friends, but no family we can chat to or rely on. We can't call on a mum for support or help, can't pop over for a cup of tea and a natter or ask them to pick the kids up. Having children I think makes that safety net of a wider network more important for us all. Friends become family and we all find our way into support and understanding.

Once this flower has bloomed and gone out into the world, it will be alone, watching others still in their cocoon, others fighting for survival in the same position they are in and being admired by people like me, who probably think way too far into a simple flower blooming in the summer sun.

Sweet Dreams

Right now, I have three sticky pads on my chest connected to an ECG monitor that will be taking measurements for 24 hours.

I have been having palpitations again for months but nothing ever shows up on am ECG

 Typically, since having this machine stuck on this morning I haven't felt any. They don't seem to have any pattern but I quite often get woken up by them.

I am on a lot of medications to make it bearable for me to move at all, each with side effects. One of them is vivid dreams. I have always had odd dreams and often woken confused by them, but now they also seem ultra realistic and I wake up not sure where I am, when it is, who is there or what is going on. It isn't unusual for me to have forgotten things like my husbands name, where we live or what time of day it is until I have come round more.

I also seem to get heart palpitations when lying in bed

 Maybe it's because I am not doing or thinking of anything else so I notice them more, but my heart beats so fast at times and feels like it is trying to escape from my body.

I don't drink caffeine, have little alcohol, many days I don't have any at all, drink plenty of liquids and try my best with the risk factors for palpitations and yet they come anyway.

I also have memory foam style feel and legs. They are swollen permanently but swell more each day, gradually reducing overnight but never back to normal. Everything leaves dents in my legs and feet, I can press a dent and it stays for over two minutes. No doctors are interested in it so I guess it's OK. It doesn't seem like it should be OK but..... That's my experience pretty much with doctors.

So, tonight I will try my best to sleep despite life, despite the grief and upset that presently shadows my thoughts, with these sticky lumpy dots on and wires attached, without putting any wires out.

Wish me luck and I wish you a good night and a fun and safe weekend