My week in review.

    It's been another week in lockdown, other than taking the dogs out and popping down to pick up some bread off Dan, as he was working in the village this week, we have been stuck in doors. 

    But it's been tougher than normal. I don't seem to be able to settle to anything and just keep jumping from one activity to the next, feeling like I should be forcing myself to do stuff, but unable to actually do so. 

    I've had low periods before, but always been able to shake them after a day or two, but this is different I can't shift it and I'm starting to think I may have depression and I hate it. 

    It's been like this ever since the Gastro doctor told me that I would probably have to be on Chemo for the rest of my life and that even if I had the surgery, I would have to stay on the Chemo. And not just the one chemo drug either, oh no, they were adding in another as well. 

    It's so stupid, why am I getting low about it, I can't change it, this is my life now for the rest of my life. I have to accept it and embrace it. And learn to live with it. And that's something I am normally good at doing so why the hell can I not do it now? 

    I feel like a failure, like I am letting my family down, because I am not doing what I always do. Smiling and powering through, looking for the silver lining and doing the oh so British thing of keeping calm and carrying on. 

    I mean I've never been great at the keeping calm bit, I've battled anxiety for years, but I had the carrying on part down pat until now. 

    

    Physical health wise at the moment, I am not doing to bad. My nose is full of sores and very painful and likes to randomly bleed throughout the day, and where my fistula in my abdomen is I keep getting some weird almost like cramping or twisting feelings, but they don't last long. I normally just have to adjust my position slightly and it goes away. Even my hair seems to be coming out a little bit less. Except when I have a shower, then for some reason I get a lot come out. The headaches/migraines seem to have stopped too, which is nice. But I'm just so tired and have no energy all the time, but I think maybe that's the depression more than the Crohn's though I can't be completely sure. 

    My tummy is pretty noisy and I spend an awful lot of time going to the toilet to find, all that's coming out is some of the loudest and longest farts you have ever heard. Dan always says, "You don't have to go to the bathroom every time you need to fart." But I can't help it, I've always been so self conscious about farting. And it's not like even when I go to the bathroom they can't hear it, we live in a bungalow, and the bathrooms not that far from the living room, it's just that it feel like the polite thing to do. Especially as some of them right now, stink to high heaven. It's likes something crawled up their and died. 

 

    Kye's doing better though. He's been getting on with his school work well and all of it too. The forensic psychology, that we are both doing together, as well as his touch typing course and creative writing course, which he just started this week, although I've yet to go through and mark his work for the creative writing course. 

    We've watched some films together too. The new Santa's chronical, one I forget the name of, with dogs and robots, and a place called robot city or something, Adam's family and Hotel Transylvania 3, Kye loves those Hotel Transylvania movies. 

    As you've probably noticed if you read my blog regularly, I've not been getting as many books read as normal either. I just can't seem to stay focused on them at the moment. Which makes all this even harder, because normally books are my escape. 

    So yeah, that it really, sorry the week in review posts are all so dole and blah at the moment, but with me still being locked down, even though most people in Cornwall are currently getting to enjoy tier 1, and feeling pretty blah myself right now, it can't be helped.

    

    I hope you are all doing well though and fingers crossed I'll be able to pull myself out of this and back to normal before too much longer. 

Love and hugs all and remember to stay healthy, because trust me the alternative sucks! 

    

 

Book thoughts: They lady of the cliffs by Rebecca Knightlinger

Blurb: Cornwall, 1285 CE

Now nearly seventeen, Megge and Brighida must endure another brutal loss. And as they perform the rites of transition that precede a burial, Megge accepts a daunting new charge that carries consequences not even her cousin the seer can predict. It brings visions. Dreams. And voices that come to her as she goes about her work.

A silken voice beckons her back to the cliffs of Kernow, which she has seen only in dreams. A commanding voice orders her back. And the menacing voice she’s heard since she was a girl is now ever at her ear, bringing a haunting new meaning to her grandmother’s words, “You’re never alone.”

But only when the tales of an old woman, a stranger to Bury Down, echo those voices and conjure those cliffs does Megge embark on a journey that leads to a secluded cove they call The Sorrows and a destiny none of the women of Bury Down could have foreseen.

My thoughts: another audio book here, again from NetGalley, but I just couldn’t get on with this one I found the narrators voice grating and just couldn’t get into it at all. And found myself forcing myself to keep listening. This one was not for me, I’m afraid. There was just to much to take in and my brain at the minute isn’t working at it’s best because of my Chemo. The writer does have a talent for writing that was clear and so I would say If the blurb sound like your sort of thing give it a go. But for me it just wasn’t working. 

Thank you to netgalley, the author and publisher for allowing me to listen in exchange for an honest review. 

When being disabled gets hard.

This Friday, my little boy will be turning seven. For most parents their children's birthdays are a joy; for me the joy is tinged with guilt.

You see, every year, when my son's birthday comes around, I spend my time searching the internet for fun days out that are accessible to those with disabilities.

Cycle track on east bank of Upper Tamar Lake for SS2812

This photo is 

© Copyright David Smith and licensed for reuse under this Creative Commons Licence

The most common activities available seem to be walks around lakes and other such places that are wheelchair accessible. These walks are pleasant enough, but not as exciting for a child as going to say, an amusement park. 

Here is where the problems start. You see, most amusement parks say that they are accessible for wheelchairs; awesome, but not everyone is comfortable in a wheelchair and very few parks say if they allow mobility scooters. So, you ring up, discover they either do or don't, and adapt accordingly  (in my case, panic a little, when they say no to the mobility scooters), then freak out about having to use your wheelchair until the moment it's all over and you're safely back home after the event.

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Uploaded by brianac37 on July 21, 2012                                                         Taken in Llandudno, Wales                                                              Some rights reserved.

It is not; however, as simple as just finding a place with disabled access. What most don't realise, until they are faced with visiting these places in a wheelchair or on a mobility scooter, is that disabled access does not always guarantee you access to the whole park. Often, when you get to these parks, you find that although some areas are indeed accessible to the disabled, many areas are not. 

The result, the person with the disability is left sitting alone, waiting for their family to return from the areas they cannot get to, which is difficult for all involved. 

Hot chocolate, Costa Coffee                                                  Uploaded by EEPaul on June 2, 2013                                              Some rights reserved.

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Picture the scene, the person with the disability does their best to reassure their family that they will be fine, sitting in the cafe or restaurant, alone, so as not to spoil all their fun; after all, why should they all suffer for your disability. 

They naturally want to experience everything the park has to offer, but are also feeling guilty, because they must leave you behind in order to do so. The result, someone volunteers as minder; staying behind with you, while pretending they didn't fancy any of the rides in that particular part of the park anyway, when you both know it's a lie, that you're holding them back and spoiling their fun.

You are. of course, grateful that they stayed, but feel guilty, because they are missing out, because of you and your disability.

I don't blame the sites for this lack of access. Most try their best to make as many areas accessible as possible, but it isn't always easy to do. There are parks that figure you wouldn't want access to rides you couldn't possibly go on anyway, but they are wrong. You don't have to ride these rides to get joy from them. Just watching your family, laughing and having fun can really put a smile on your face.

Wheelchair Accessible

Uploaded by Lachlan Hardy on April 25, 2013

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These problems are what really make my son's birthday hard for me, as ultimately my family try to plan around me and my needs instead of deciding what they want to do and where they want to go based on their own honest desires.

This is when I really hate being disabled. I don't want my son to decide what he wants to do based on my disability. I want him to make the choice based on his own desire. 

I am pretty good now at coping with my disability; even the constant pain is something I have adapted to, but spoiling my family's fun is something I don't think I will ever learn to cope with.

Thankfully, this year I think I've found a solution thanks to Trethorne Leisure Park.

Although they don't state on the website if mobility scooters are allowed, they do seem to have wheelchair access to most of the site.

Not being the bravest person in the world, I still find using my wheelchair in public places a struggle. I favour instead, my mobility scooter, which I feel far less exposed and vulnerable on. 

Another added bonus of my mobility scooter is that I don't have to ask for assistance, in the form of a pusher, as I frequently have to, when in my wheelchair, due to my serious lack of upper body strength.

So, my hope this year for my son's birthday outing are:

1) Mobility scooter access. 

2) Access to the majority of the park, so no one is forced to play minder and no one is left behind.

3) We don't get to many staring, pointing, or rude people, making disparaging comments. You'd be surprised how often people do this, as if a disabled person is an added attraction.

4) By far, the most important hope of all is that my son has an amazing day out with us all. A day that he'll remember fondly, forever.

My amazing little boy, when he was a little younger. 

And on that note I will bid you adieu, wish you all a lovely weekend; well, what is left of it, and ask just one small favour. Please treat others as you would wish to be treated, regardless of colour, creed, or disability. We're all just human, after all, and simply trying to make the best of what life throws at us. 

Love and hugs, Joss xx

If you would like to know more about Trethorne Leisure Park, check out the link here. 

If you are interested in learning more about Tamar lake (pictured in this blog) and it's disabled access click here.