Living with Cerebral Palsy 🍋🍋

Tuesday, 17 April 2018

No place like home?

Recently I was asked to write a review of the disabled facilities at Chester's 'Storyhouse' for the fab website 'Euan's Guide'. Euan's Guide is the leading disabled access review website in the U.K. It is an award-winning sight built by disabled people for disabled people and is also a registered charity.
 Euan's Guide aims to inspire people with limited mobility to try new places. The website was founded in 2013 by Euan and Kiki Macdonald, after Euan became a power chair user following a diagnosis of Motor Neurone Disease. Since Euan's Guide uses reviews from members of the public who have actually visited venues around the UK, it means wheelchair users can get an honest cross section of opinion about the accessibility of venues, rather than just what the 'official' websites for said venues state.
It can be frustrating and time consuming to rely on trial and error when choosing where to visit if you have a disabled person in your party. There is quite a distinct lack of information in general on the web regarding places with appropriate disabled access. Also, what works for manual wheelchairs may not always work for power chairs or mobility scooters and many web pages citing disabled access at their venue don't make detailed enough distinctions.
That's another reason why Euan's Guide is so handy, each review clearly states who was visiting and what their specific needs were at the time. As we are going to Edinburgh in the Summer, I will definitely be trawling Euan's Guide to see the recommendations for families in our situation. Euan's Guide states that is aims to remove 'the fear of the unknown' for disabled people visiting a venue for the first time and I think it has definitely achieved this aim with a wonderful vision by Euan and Kiki. It's not until you stumble across something so useful that you wonder why on earth you never googled it before!
Finally, the reviews on Euan's Guide are concise, honest, friendly and empowering. I would encourage anyone in our position to take a look and more importantly to add your own reviews to Euan's Guide, from coffee shops to museums, hotels, shops and everything in between. Sharing your experience might just give someone an invaluable helping hand in deciding where to spend their down-time in the best place available, wherever they are.
Reviews for Euan's Guide are super-easy to write and upload. The link below is my first review for Euan's Guide, of Storyhouse in Chester. Regular blog readers will be unsurprised that I highly recommend a visit! It is my own home away from home and the first place I found that I not only love in it's own right, but a place I can share with Elin too whenever we want to just hang out somewhere as a family. Not all outings have to be about a big mission or a big day out. Sometimes we want to just go and have coffee in a home away from home- somewhere where there is a supportive and accessible environment to simply watch the world go by in. Thank you Storyhouse for providing that for us. Thank you Euan's Guide for enabling us to share it :-)
https://www.euansguide.com/venues/storyhouse-chester-8263/reviews/their-house-is-everyones-house-7271



xxxxx
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Monday, 15 January 2018

Blue Monday

Apparently today is the most depressing day of the year. You won't get any arguments from me about this! It's miserable, everyone is overweight and skint (by everyone I mean me) and it's becoming more difficult to imagine what the sun even looks like or what it feels like to be truly warm. Illness is all around with a national flu pandemic and I know from first hand experience this Christmas the NHS is in complete crisis, despite our PM's protestations to the contrary. There is a total knuckle head in the White House tweeting outrageously every day as if to serve only to depress us all further, the daily news seems to carry only stories of evil and the future of the world seems as bleak as the weather. "Blue Monday" indeed.
At times like this, our situation with Elin can weigh more heavily than I would ever normally let it on my psyche. I'm angry. I'm like a little ball of anger. It's hardly surprising that when everything feels so insurmountable, the things I have trained myself not to dwell on re-surface like an indestructible villain coming back time and again at the climax of a horror movie. Don't get me wrong, Elin's been great (the one saving grace of a pretty stressful Christmas holiday this year) and for that I am forever grateful. But her dystonia hasn't been as good. Coupled with the terrible weather it's rendered us quite housebound, since taking her out whilst her muscles contort and spasm violently in her chair isn't really fun for anyone. At first you deal with it, as you always do. However week after week of it can start to grind you down. Family outings, or actually even just getting Elin to her necessary therapies and appointments, can be totally draining emotionally and physically. Elin is so big now (and heavy!!) and she turns 10 this year. When her dystonia is at it's worst, nothing seems easy. Because it isn't. Negotiating each day starts to feel like a big deal.
Last night Elin was up from 2am. Mental exhaustion is really starting to kick in when added to anxiety -two of my favourite bed fellows! So, what, I hear you cry, is the answer? I didn't come here just to moan (I don't think). I came here to write a list of things that help when this is what life is throwing your way.
1. Friends and understanding. Cliche's end up being cliche's because they are usually true.  Nothing will highlight your true friends like a little bad spell. I, of course, have learned this time and again over the years. Interestingly I have never once been surprised either by those that are always there for us. You just know who has your back and you know those who just don't really get it, or don't allow themselves to try. I am incredibly lucky to have accumulated some amazing groups of friends over the years. I simply don't know where I'd be without them (and without Whattssap group chat- thank you, internet!)
2. Books.  Books save my sanity time and again. I am deeply sorry for anyone who will never know the joy of getting totally lost in a good book. Total bliss.
3. Netflix or Iplayer or whatever you can get a good watch on. Pure escapism. "The Handmaids Tale", "Stranger Things" and "Big Little Lies" are my top 2017 water-cooler picks for box set brilliance. Over Christmas I managed to switch my brain off long enough to get immersed in "Little Women" (some lovely moments) and "Feud:Bette and Joan" (for a vintage hollywood history screen legend luvvie geek-girl like myself this was PURE JOY). Nothing beats curling up in front of the fire and getting lost in a creatively magical world of strong characters and good stories.
4. Conversation. The vicious circle of  depression dictates that the less you do the less you want to do and the less people you see the less you want to see. But there is no substitute for getting out and having a chat to lift the spirits. This is where Storyhouse, Chester, comes into it's own for me.Storyhouse is the new theatre in Chester (though it's so much more than that). I volunteer there and getting out to work some shifts around their Christmas show "The Secret Seven" and a couple of other touring show's they have hosted has probably single handedly boosted my mood more than anything else. Suffice to say taking the plunge and getting to know and work with complete strangers (often a completely different group of people each shift) has been more of a tonic than I could have imagined when I joined the team. Being an unashamed thespian I loved Storyhouse anyway, but now even more so. I was a bit scared to make the leap of joint their volunteers but I'm so glad I did. This will definitely be elaborated on in a blog post of the future, but if you've never heard of them check out their website https://www.storyhouse.com.  I'd been feeling a little lost recently since I gave up my permanent teaching job and exchanged it for the full time job of being Elin's Mummy (this is also another blog post in itself for the future !) I like getting out, meeting people using my brain a bit in whatever capacity I can. This has served to scratch that itch for me for the time being and I love that I've had that opportunity. Thank you Storyhouse.
5. Walking. Now Elin is back at school, the pressure of being confined to the house has lifted in that appointments and therapies and some other commitments  aside, we are able to get out sometimes for a massive walk. It really does clear the head. It definitely makes me less angry, too :-)
6. Elin's smile. Enough said.
7 . Counting your Chickens. We have so much to be thankful for, we know that, and Elin's good health has been a source of huge gratitude and pleasure these past few weeks in what is historically a difficult time of year for her.  Nothing like slapping yourself with a wet fish and telling yourself to get a grip, the British way.
I'm sorry of this has been a bit of a depressing post. I know it's not like me and it kind of goes against the theme of this blog but we all feel like this sometimes, right? I do wonder if sometimes remaining so positive has sort of created a not wholly accurate portrayal that this life has somehow magically become easy or at least that we don't still struggle daily with what happened to Elin, that we no longer worry, or cry, or feel helpless, or are knackered or in shock. We do and we are, it's just rarely a compelling enough feeling to discuss with anyone but each other. That too, though, is something to be thankful for because it means each other is more than enough for most of the time :-)
I think that's enough morbid introspection, because one thing the past ten years has most definitely taught me is that this too, as everything, will pass.
Oh, I forgot one more thing that helps me cope with these blue January days...
8. Blogging.
Thanks for reading, as always,
Ruth x
Storyhouse, Chester.


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