One way systems

We were half expecting someone to turn up today to collect Mr J's belongings and clothing, but with communication poor and mind games and power trips taking the place of any common sense 🙄we couldn't be certain. Just in case we decided to go out for the afternoon- in the rain.☔

It definately did not feel like summer today- more like autumnal weather but with the beauty of summer throughout our visit.

With the changes to days out due to the coronavirus and safe distancing situation, we looked into the new rules and guidance for our visit. We booked in advance, knew the toilets would be open (yay!), there was a one way system around the lake and some areas would be open around the children's play area (but we had no intention of going there anyway). With our dietary needs, we took our own picnic and hot drinks along with us, found a couple of seats under a tree and sat down on the inside of coats.

 

There were lots of people out on the lake rowing, plenty of couples enjoying the view with a hot drink and snack from the cafe (where the barrier to enter was too narrow for a wheelchair) and extra strength mosquitoes were out too. Hubby got bitten several times whilst in the cafe buying some crisps and Miss G used the windmill of sleeves approach to deter them from getting too close to her.

We saw black swans (Miss G noticed the inside of their wings is white), a moorhen chick, goats (that looked like they were floating where we had our picnic), fairies that I'm sure weren't all there before and enjoyed the flowers and wilder feel than usual.

As for the one way system, there were a few yellow arrows on the floor now and then and signposts placed at most of the junctions. At the start you had the choice of heading left .⬅ around the lake or right ➡ to the Italian gardens. Walking around a lake in one direction is simple enough you would think (never assume) but at the end, when the arrows vanish and you are faced with a myriad of metal barriers between you and the toilets, 🔀a sign pointing away from the toilets telling you to go that way, but the path infront of you leads to the disabled toilet with no signage or arrows it gets more complicated. 

We got told by a man, who's job seemed to be to sit outside the toilet block telling people they had to go in the other way and only one person could enter the toilet at a time (not possible when you are two disabled people and a carer), that we were lucky 🚻 there was no queue so we could access the toilet - surely putting a no entry sign on the direct route to the toilet would save a wage?

So- if you plan on visiting, do not head down the level, paved entry direct oto the disabled toilet, instead you must follow the sign to the toilets that points in the opposite direction and down a make shift path of bark chippings (I'm sure someone thought it was a good idea at some point). But at least they are open! Plus- the ice cream kiosk sells vegan ice cream and sorbet. Fabulous!

There were a lot of metal railings alongside the main restaurant which looked like they ight be to separate people queuing for tables from people walking down the path, but, once we got to the other end there were arrows there directing people either side of the railings depending which direction they were walking. It would have been useful to know that at the top end too really. Never mind- we continued on.

The fountains were on, the fairy 👸was still trying to blow the seeds off the dandelion clock and the flowers were all in full bloom in the Italian gardens as we mader our way through as many colours as possible towards the temporary exit.

It seemed that each time we put our umbrellas up, the rain would ease off, then we would fold them up which encouraged the clouds to release more water. Thanksully we had our inside out umvbrellas with us so folding them up didn't cause us to get soaked by wet umbrellas. I was sceptical (as ever) when I bought them but they really are worth the money. I love that from the outside they just look black, but from the inside we get to see the gorgeous patterns we chose. Plus the handle is so easy for me to hold.

Our walk took us over board walks, saw Miss G get her shoe stuck in a tree👟, under fairy homes and past many structures.

There were three stag beetles tucked away just off one path, a kingfisher hiding by the stream, otters, an underwhelming dragon (according to Miss G), mushrooms, rams and so many more.

We saw herons fly, sitting on the waterfall and in a tree. The wildflowers along the start of the walk were beautiful- a rainbow 🌈 of colour followed by a mostly sunny yellow display.

One of the last finds was a shrub with flowers that bloom from a dandelion clock-type seed ball. They were clearly visible in every stage of bloom and were mesmerising.

It has been a long time since we visited, and now we know the secret rules of the one way systems I am sure we will revisit soon. There is nothing quite like spending time outdoors👨‍👩‍👧 to clear your head and change your focus.

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

Don't open the burger box!!- going for a wee during a pandemic

After I read this article on inews it hit a nerve with me because we have had our fair share of incidences over the last few weeks with the lack of open toilets, but no-one seems to be talking about it.

I wish the prime minister or health secretary had experience of bladder issues or chronic illnesses. Honestly, during lockdown this wasn't a problem- the only issue was if someone else in the family was using the wetroom instead of going upstairs to the bathroom. As soon as we have been able to go out for more than one short period of exercise a day, this part of life has been almost impossible. 

In our car we carry all sorts of things between us all, but one more recent addition is a portable toilet. Being a powerchair, in the back of a converted VW there isn't much privacy. I am surrounded by windows on all four sides. The only way we have worked out is to try and park somewhere quiet, get a blanket to cover me up, wriggle to the front of my powerchair as much as possible and hope for the best. It is far from a quick fix or a fail proof method. It would be far easier and simpler if I could use my RADAR key to access the padlocked disabled toilets when we are out and about.

I understand that everyone needs to be extra vigilant with the pandemic, but how is making people either wet themselves or urinate in people's gardens/on beaches/in bushes any better for people's health than having handwashing facilities and ensuring face coverings are always worn at public conveniences? The number of people who don't wash their hands after using the lav anyway is disgusting, so I don't see that changing. It means I carry around my own hand sanitiser, tissues, wipes and soap sheets as a matter of course. I have a face covering, as do all my family, plus spare individual wrapped ones in the car and in my wheelchair bag. I am not aware of being able to catch the coronavirus through a toilet seat, so don't see the issue.

As it is, with two of us in the family having bladder issues and bowel issues, any trips outside are always planned to include regular and failsafe toilet breaks. At the moment this is impossible. When we have needed the toilets they have been locked with padlocks. We have seen some people climbing over barriers in shops to use the toilets, people moving barriers out of the way to take their small children to the toilet- unfortunately I can't be that sneaky in a large powerchair, it tends to stand out a bit. 

At home, I have to make sure there is someone available to help me when I need a wee, so that is sometimes tricky, but having the public toilets open again across the country will open up our lives again and mean we can travel out of home's reach.

When a toilet is flushed without a lid, droplets are flung out of the toilet bowl all around the stall. This happens all the time- which is why lids are invented. People so often don't use the lids, and disabled toilets often don't have them anyway. The toilet water being flung around wouldn't matter any more than it usually does as long as people wear face coverings and wash their hands surely? After all, we can now go to the pub, to the cinema, for a meal out, shopping, get married and more- all differently to prior to covid19. In Ireland they have even published guidance on how to use a toilet now!

This article goes on to talk about the litter being left by the public visiting beaches and parks. Just this afternoon we visited our local park and saw the usual amounts of litter left around the place there too. There are always the tell tale signs of the darker side of the park where groups of older teens and men (not being sexist here, it is men around here) gather in groups for a smoke and drink, presumably unable to find the many bins on their way home. There is always broken glass somewhere there too to accompany the beer bottles, cans, bread bags and other general waste floating in the lake. It seems that people with this same mindset are also visiting the beaches photographed for this article (and many others like it). I have never understood how anyone can litter. If I drop anything at all I always go to pick it up, or ask someone to help me pick it up. I would never be able to just get up and walk away from a collection of bottles, wrappers and packets we had used. 

I remember seeing my mother in law drop some litter on the floor when my husband and I hadn't been together very long. I pointed it out to her and she just left it. I mentioned it to my husband who told her to pick it up. I felt awful, like the litter police or something. 🙈

Our children are awful at home for leaving half finished bottles of drink around but when we are out and about they know to use the bins or their pockets and (being gloriously literal and autistically honest) are keen to loudly point out anyone who they see drop litter.🌈

It says there was faeces in food takeaway containers - how would you even do that on a busy beach?! (I do not want answers). We have all been there with children, desperate for a wee you hold them up at the side of the road for a wee so they don't wet themselves, but this is so different. Yuck.

(All images from pixababy free clipart)

If you were a girl who dated a boy and then turned into a boy, would you be gay?.....

Random questions...If you were a girl who dated a boy and then turned into a boy, would you be gay?

We have just eaten our free from sausages as hot dogs for lunch with delicious fried onions and sauce and everyone is relaxing around the house. Miss G is having a bad day and has gone to watch a DVD upstairs in her room, Miss A is watching YouTube videos on the sofa, I am on the computer (obviously) and hubby is finishing up in the kitchen then going to chill out for a bit too. Then, out of the blue, comes the above question.

I have been looking up information about the LGBTQIA community, trying to better educate myself on the right terms and acronyms, but I am still not entirely sure my answer is correct. I think that it would mean that you were trans and gay. (Please correct me if I am wrong...I want to get it right). 

We always have open discussions in our home, give truthful answers appropriate to the person's age, but it doesn't mean I don't get surprised now and then by the questions. Miss A is 7 years old and asking questions like that already. 

The children have been discussing sexuality a lot recently with friends, trying to explore where they each fit and how they feel. We just keep an ear out and make sure they are safe in their discussions and help them with any questions along the way. Don't misunderstand, they discuss other things too, like the killing of George Floyd and Black Lives matter, Boris Johnson and how little sense he makes with the lockdown rules, Pokémon and other topics too, but most of the questions and parental learning is based around their sexuality and gender discussions.

I can't imagine ever being able to discuss anything like that with my parents growing up. They were the type who left leaflets in strategic places and discussion was never open. If I had been gay or bi they would have hit the proverbial roof. Their attitudes to anything and everything different to them made me determined to be able to have open communication with my children and bring them up completely differently to my own upbringing. It was all about other people's perceptions, not being different or standing out, what other people would say or think about them. With children with additional needs I honestly think living like that would be impossible anyway, but we have been out with facepaint on (including on me), wellies and fancy dress together, random clothing that no other person would wear together and it doesn't matter. The children know that it doesn't matter what anyone else thinks or says. As long as they are happy, safe and comfortable then it is all good.

(image from dreamstime.com free clipart search)

All mixed up

This blog is supposed to be about living with multiple disabilities in the family, so that includes all of us in our household (everything seems to be about households lately). Therefore, it makes perfect sense for me to include here my own part of what has been going on in our household recently. 

I am still coming to terms with the health issues I have myself. There seem to be new symptoms popping up, unwelcomed, frequently. The GP keeps repeating tests and spiel that I have already been through. I know that is what will happen at the GP so I always put it off as long as I can, then go through almost desperation, only to be disappointed that they repeat the above over and over. Then I am left wondering why I bothered them in the first place.

Over the last couple of months I have been to A&E twice for myself, both times regarding the same issues and symptoms. Both times I had the same procedures carried out, the same tests, the same spiel and was sent home to go through it all again at home not wanting to waste anyone's time by going to the hospital again (not to mention that the hospital has been the last place I have wanted to be near during this pandemic). 

I have also been to the GP twice over the same time period, for the same symptoms, had the same tests and spiel and been sent home to go through it all again without bothering anyone.

If you are reading this and are someone without chronic illness perhaps that last sentence seems nonsensical to you, but trust me, there are many chronic illnesses that cause scary symptoms and we put up with a lot before we approach medical professionals because we (people with chronic illnesses) know, from experience, that they do nothing.

I have had so many repeated blood tests (telling the phlebotomist every time that I need a butterfly needle using because my veins are awful....they never listen), ECGs carried out, chest x-rays and tests of various bodily functions over the years that hospital doctors always comment on the size of my medical notes for someone of my age. If only they would listen to me every time I have to see one of them, they would save a lot of NHS money and time. But they never do. 

I took this copy of the meme from Bing images search, but it is frequently doing the rounds on social media platforms.

Doctors (generally speaking....I have met one or two good ones along the way) just don't listen. They hear one symptom, have a thought and run with it, totally ignoring you from then on.

Example:

Just yesterday I contacted my GP after having heart palpitations, chest pains, numbness in three digits, foot and ankle swelling and awful acid reflux. She phoned me back (everything has to go through telephone triage during the pandemic), heard that I have heart palpitations and told me the acid was a separate issue to be dealt with separately. She told me I needed to be seen but to go to A&E if I felt in danger. I explained to her I had been there twice recently with the same issue, at which point she looked at my notes for the first time (!!) and saw that was true, also that I had been to the GP about it before too and gave me an appointment time later in the afternoon.

When I got there, it was the healthcare assistant who I saw first. She did an ECG (again), checked my temperature, blood pressure and pulse whilst I had chance to read my printed out notes summary. I saw that someone had scrawled on there that I needed an ECG (again), h-pylori test (again) and to be referred for an endoscopy (the second referral for this, but i haven't had one, just the joys of a sigmoidoscopy) and a 24 hour ECG (again, i was supposed to have been referred for this in February but when it came round the pandemic had begun and so everything was off.

I explained I had already had a H-pylori test and it was negative, but, as usual, because it wasn't this specific GP who had ordered the tests, I had to have them again. So, I was told to wait for the results (again) and then to back to her again (really?) so she could refer me for an endoscopy depending on the results (again). The ECG was normal (again), so I was told that an ECG will often be normal at times when the main symptoms aren't occurring (again) and that a 24hour ECG would be better. This left me wondering about the sporadic symptoms of chest pain and palpitations with numbness- what if they don't occur during that specific 24 hour period? I don't get them everyday. 

She had also written down that I used to take a medication for the palpitations (I actually still take it, along with two other medications for my heart) and that I take medication for acid reflux (actually, I am on the maximum dose and still getting significant symptoms which the previous two GPs have told me needs an endoscopy, but you can't ever get the same GP twice). She was not interested in the numbness, swelling or dizziness. My heart rate shoots up to over 120bpm when i am doing nothing sometimes and it feels like my heart is trying to escape my body. During the ECG I saw it was at 112bpm, but the GP wasn't interested at all. So, I wasted over an hour there with no difference.

I have had so many tests and procedures carried out that I am extremely cynical of the medical profession. They find something, tell you the name, sometimes give you medication (depending on what they find) and that is that. It was the same when my children were diagnosed with autism. The professionals assessed them, agreed with what we had said all along, gave it a name (autism) and that was that. Good luck and off you go. I don't think it is enough. 

Aswell as these glorious visits to A&E (following the green lines not the red), the GP (wearing the face mask), we have been dealing with a lot more...

(|I get some funny looks, but being in a wheelchair I am used to that)

....leaving an abusive relationship several years ago has caused us financial hardship as a family for a long time. We have never been able to settle properly and feel safe anywhere because there is always the possibility he could find us. He has access to NHS records (yes, I know they aren't meant to access them but you aren't meant to do a lot of things he did) and that terrifies me. I have asked for them to be locked but because things didn't go to court the NHS can't do that. |it is extremely frustrating. If we didn't have any health issues I wouldn't register with a GP or dentist, but we can't do that unfortunately. 

Anyway, since leaving him we have had to move five times. That is five houses that needed decorating, five houses that needed flooring, five houses where our furniture didn't fit so we had to source different furniture, five lots of new insurance, five removal companies, five gardens that needed childproofing and dog proofing, five gardens that needed securing from the outside world, five times we have had to pay the remainder on our TV bills and so on. I am sure you get the picture. We have also had to change our car (vehicle...we had a van for a while) twice before getting a Motability car, needed to pay privately for autism diagnoses because the type of autism two of our children have is not diagnosed here on the NHS, had to pay privately for MRI scans and other medical scans because the NHS doctors don't do them, needed to buy mobility aids as my condition deteriorated quickly (they are not cheap- honestly, you put the word autism or disability in anything and they add zeros to the prices). Being on benefits is tough enough without having to go through all of that. Having autism is tough enough without having to move house and everything changing so often. 

We needed to use a foodbank one day and we saw a desk set up in the corner, run by a money advice charity. We spoke to the advisor and were advised the best way forward for our situation. We have taken her advice and are waiting to hear back (everything is slow at the moment because lots of people are working from home).

As well as this we have been dealing with violence and anger from our son for the last seven or so years. He has always struggled with anger but as he has aged and become stronger it has become more difficult for us to handle. We got pushed beyond our limits last month and he moved out. We tried to get social services to help us being him back home, but they wouldn't. They twist every word you say and try to get you off their books as soon as possible, costing them as little as possible.

Scenario 1. Continue to put up with the violence, aggression and anger at home with two younger siblings with additional needs terrified and my husband being physically assaulted.

Scenario 2. Make the house safe by taking my son to his biological father's side of his family as an emergency measure whilst waiting for social services to step in and support his return home.

Scenario 1 would be us putting the two siblings at risk and social services would step in. It would also mean the stress and threats would continue. We have gone this way for years, hoping for help from all the services I have approached, but all they could offer was two hours now and then at a sports activity he hated and got into trouble at. 

Scenario 2. The home is instantly safe, he is safe, social services are aware.

This time we took scenario 2. Because he was with a member of family (it could literally be anyone who is family, no matter how distantly related, or even a friend) social services no longer see a need for them to step in. They can't put him into temporary foster care because he is safe with that member of the family (300miles away) and can't work with us to bring him home safely unless we take him back into the home now. 

Obviously there is no chance we could just pick him up and bring him home like nothing had happened. I had contacted CAMHS, spoken with a team who support families to stay together and could work with him in foster care locally, had got towards the end of the process for him getting into a perfect special school for his needs, but his biological father's parents told social services they wouldn't allow him to go into care. The end.

I haven't seen him since the beginning of last month. He no longer answers my messages or calls and his father has told the social worker (who no longer has anything to do with us) all contact has to go through him, but he doesn't answer my texts or calls either. We have boxed up his things, but they won't come and collect them. His father was quick to get onto child maintenance though and tell them the date he left here! My instant reaction when they said they wouldn't allow him to go into care was that it was financially beneficial to them to take him in. They have been very very quick to sort all that out.

The part that sits awkwardly with me, other than having to accept I basically now only have two children instead of three, is that he isn't living with his father. The 'reason' I am given is that his father lives with his girlfriend....and?.. I find it extremely weird that he hasn't ever been to their house either. To be totally honest it feels as if he has died. I know we did the right thing and I fought as much as I could for him. I know we did the right thing for everyone and the home is much calmer now for it, but I am still his mother and it hurts that he won't even have contact with me.

On top of all of that I am struggling quietly with feeling down. I have had depression before, more than once and know what it is. I am trying to fight it off, but there seems to be so many things going on at the same time (but there always are in our lives) that there is no escape. It isn't to do with the pandemic- I have found it a positive experience to have my family home more and not be home alone so often. It does mean that i am cancelling care calls more often though because I just don't want a stranger coming in and going through the motions. I would rather stay in bed or stay up late in my clothes and wheelchair. I got in trouble before with my "social worker" so am waiting for this to happen again. But...I am an adult. Surely just because I need the help of carers for personal care morning and evening doesn't mean I don't have the right to cancel them time to time? I went to the GP earlier this year about feeling depressed and suicidal. She told me she couldn't put me on any antidepressants because one of my painkillers is also an anti depressant so it would mean changing that slowly. She gave me a phone number to ring and that was that. So I haven't bothered since. I do email the Samaritans now and then when things get too much. I am useless on the phone and find texting or emails much better. 

So yes, the country has been in lockdown, people have been stressed about being home, being on furlough, not being able to go to the pub or cinema, having to only have one exercise a day, now expanding their household bubble to include another and it has been awful. It truly has tested everyone. But there have been beauties along the way- just look up the positive effects on nature, the smog levels across the world, kindness shown by people to others and everyone noticing nature more. The pandemic cannot be blamed for everything. Life goes on and as the saying goes "this too shall pass". When it does, all the normal life issues will be there, waiting for you.

Images from Bing search for free clipart or personal albums

If you need to contact the Samaritans by email:  jo@samaritans.org