Wednesday, 30 March 2016

INSPIRED BY... ANNA JONES


Interviewing people who inspire me has become one of my favourite things. Today I have Anna Jones' answers to share and I think they're fantastic.

Anna writes the blog M.E., Myself and I where she documents her life 'in the slow lane' with invisible, chronic illness. She writes openly and frankly about her experiences, providing reassurance, solidarity and comfort to sufferers all over the world. Her posts are informative and give an amazing insight into life with a horribly misunderstood and underestimated illness. 

I am hugely inspired by Anna's commitment to raise awareness and improve outcomes for M.E sufferers like herself. In May 2013, Anna started 'Blue Sunday', a fund- and awareness-raising tea party. She hosted this in person and online, asking that anyone taking part donated what they would pay for a cup of tea and slice of cake to the M.E. Association. With so many M.E. sufferers unable to leave their beds, Anna provided an amazing accessible alternative to traditional physically demanding fundraising efforts. During the event Anna uploaded photos of what was going on at her tea party at home, while people far and wide uploaded their own from their bedrooms.  'Blue Sunday' was such a success that Anna was quite rightly nominated for a JustGiving Award and a WEGO Health Activist Award. It has also since been adopted by the M.E. Association as an official annual fundraiser.  In 2015, over £5000 was raised for M.E. charities.

Something that has really struck me as amazing about Anna is the way in which she cultivates a sense of community among fellow chronic illness sufferers. Becoming suddenly very poorly can be extremely isolating, but through 'Blue Sunday' and her ongoing social media presence Anna has created a warm- and inclusive- feeling environment. With her friend Cara, she started the hashtag #ChipperTuesday on Instagram. Through this, chronic illness sufferers share photos where they are wearing or doing anything that brings a smile to their face. Sometimes when chronically ill, it is easy to get bogged down in the overwhelming negatives of the situation. I can personally vouch for the effectiveness of the hashtag in drawing out the silver linings. On multiple Tuesdays I have had a look around me to take stock of the little things bringing me joy.

I could gush about Anna all day, but I'll stop here now and share the answers she gave to my interview questions.


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What are you most proud of? 


Where do I start?! I am so proud of my ability to just keep going; to get up each day that I am physically able to; to bounce back from every setback and relapse; to be so far out of my comfort zone and start dating whilst being disabled. But perhaps Blue Sunday is the thing that sticks in my mind the most. This year will be my fourth annual tea party to raise money and awareness during M.E. Awareness week. It’s now an international event, albeit a small one. Last year we raised over £4000 just by eating cake and drinking tea. It feels so wonderful to have achieved something like that while being so ill. 

Who/what do you look to for inspiration? 


My mum has always been my idol and to see how she has dealt with one of her children becoming a chronic illness sufferer has been truly inspiring to many people. I often think that chronic illness is harder for those around the sufferer and my mum, along with my family, has dealt with it admirably. 

When chronic illness feels like a bit of a cloud, what’s your silver lining? 


The other sufferers I have ‘met’ along the way. I meet up with them everyday online and my journey would have been so incredibly bleak without them. It’s their unwavering support and the knowledge that they truly understand what it is like to become chronically ill during what should be the best years of your life that has been invaluable. I would be lost without them. 

What would your advice be to someone who has recently fallen ill? 


Be kind to yourself. This is not your fault. Forget about comparing yourself to your peers or even to other sufferers. This is your journey. Allow yourself the time to be sad and frustrated but learn to celebrate what used to be such everyday tasks. They are now the biggest achievements of all.


PLACES YOU CAN FIND ANNA





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Thursday, 24 March 2016

HOW I HANDLE VULNERABILITY


Before I fell ill, I was never much of a social media person. I rarely updated my Facebook status and didn't have a Twitter or Instagram account. 

Deciding to start sharing my thoughts and experiences on the internet was quite a frightening leap. Even a few years down the line, it's still not something that comes naturally to me. I have never clicked 'publish' without being hit by a wave of vulnerability. It makes me feel exposed and anxious. 

This being the case it may be surprising that I have continued to share my experiences publicly. The reason I am able to carry on is that the vulnerability I experience is far outweighed by the positives that come from blogging. More than anything else writing here leaves me feeling clearer and somehow lighter. Much how I used to feel after a long run. Without a physical outlet, putting together blog posts has become a major way in which I process the more difficult things and reach a balanced, optimistic outlook. Add in to this the invaluable friendships I have made and the money I have been able to raise for charity through my attached jewellery shop, the pros clearly win out over the cons.

When the vulnerability anxiety kicks in, these are some things I have found to be useful:

IMPOSING A SCREEN BAN

Sometimes after I have hit publish, posted a photo or sent a tweet, I am prone to revisit it and repeatedly check it over. By the time I have committed something to the internet the chances are that I have already spent a fair bit of time going over it. Once published, further revisits are not productive or helpful. If I'm on my phone or computer, it is all the more tempting. I find that stepping away from screens is a good way to reduce some of my anxiety and lessen the impulse to panic re-read.

ACCEPTING THAT AUTHENTICITY IS ENOUGH

It is highly unlikely that any post I ever write is going to be perfect- there are going to be mistakes  and holes in my knowledge that I look back on one day in the future and cringe at. I try to remind myself that this doesn't mean that whatever I'm posting won't still have value. If I'm brave enough to be as honest and open as I can be at the time I write something, that in itself will be enough to look back on and be proud of. Even if my facts weren't right or I change my opinion on the subject matter later.

MOVING ON TO SOMETHING ELSE

When I'm not sharing things publicly on a regular basis, I find that I end up putting more pressure on what I do share intermittently. The more momentum I gather and the more things I put out into the world, the less important just one item becomes. If in the future it turns out that there is a post I'm not so happy with, it will reflect less on me if there are lots of others that feel more in line with what I'd like to represent. When you're chronically ill and energy reserves are limited, it isn't always as simple as putting together a new post straight away, but I find that even just jotting down ideas that I'll get to when I can helps distract me from my feeling of vulnerability and eases my anxiety.

DOING SOMETHING

When I feel anxious, my thoughts run in circles and can seem like they are getting bigger and bigger, gradually taking over my brain. When this happens, I find that distraction is very important. Focussing on doing something gives my mind a bit of respite and allows my more logical thoughts to step back in and take control. Some of my go to activities include reading, listening to audiobooks and small crafts.

SELECTIVE SHARING

This is an important one for me. Just because I have shared something in one place doesn't mean I need to share it everywhere. There are certain things that I'm comfortable with people from all areas of life seeing and others that I would like to keep to select groups. I know for example that sharing my blog on my personal Facebook page can make me very anxious so unless I have a particular reason to, I tend to avoid this. 

REMEMBERING WHY

The biggest and simplest thing that helps me when I feel vulnerable is forcing myself to think about why I put myself in the vulnerable position in the first place. Just a a quick recap of the potential positive outcomes can do wonders for my anxious mind.



While I know that all of the things I have listed can be helpful, I don't always follow my own advice. My hope in writing this post is that next time I go to re-read something for the hundredth time I can visit this post instead. 
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Tuesday, 22 March 2016

BEARHUGS


In the Summer of 2015 with the support of the Prince's Trust, I launched my gift box business, BearHugs.


The idea for BearHugs was born after I received an especially thoughtful package from a friend just when I needed it most. Having come to terms with chronic illness, I wanted to start something that not only gave me a purpose, but helped to  promote the small acts of kindness I knew to make a big difference.

It was important to me to make a range of gift boxes that were not only perfect for saying Congratulations, Get Well Soon or Happy Birthday but also for just about any other reason you can think of for showing someone that you care.

My BearHugs gift packages, built around the theme of comfort, include items such as hand-poured scented candles, high quality chocolates, artisan teas, cosy socks, homemade Belgian hot chocolate, crossword books, healthy snacks and much more besides. Every box is packaged with care and reveals a ‘Consider this a BearHug’ label on opening. I try to make it so that all boxes can be perfectly tailored to the preferences of your loved one. They can then be sent directly to their doorstep with the added personal touch of a photo notecard.



Sometimes nothing beats a hug but we're not always within arms' reach of our loved ones. BearHugs gift boxes are there to deliver all the warmth and comfort when you can't.





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CHARITY ETSY SHOP: ALL PROFITS DONATED TO THE M.E. ASSOCIATION


Since being ill, I’ve found maintaining a sense of purpose to be really important. At my poorliest, I drew accomplishment from working my way through an audiobook a few minutes at a time. Later, as I got a little better, it was from writing blog posts and making jewellery.

The simple pieces of silver jewellery that I've made to pass poorly days are available to buy on Etsy in the Freckles & All Shop. 100% of profits are donated to the ME Association.

For more information about the ME Association visit http://www.meassociation.org.uk/

As of 10th August 2015, all profits from the Freckles & All Etsy shop are donated through the  Freckles & All JustGiving Page.

Browse my jewellery and visit my shop by clicking on any one of the items below






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Saturday, 12 March 2016

DISNEYLAND PARIS


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Wednesday, 9 March 2016

DISNEYLAND PARIS ACCESSIBILITY GUIDE



For my birthday this year my family very kindly and generously treated me to a trip to Disneyland!

Last week my Mum, my sister and I hopped on the Eurostar to Paris for a magical weekend together.

Having recently started treatment for Lyme Disease, I wasn't feeling my best but with some amazing planning my Mum arranged the trip so that I could enjoy it as much as possible. I had the loveliest time.

I didn't know what to expect before we arrived but ended up being very pleasantly surprised by the accessibility and the staff's knowledgeability of my difficulties. I thought it may be useful for me to share my experiences and findings here.

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Access Cards

Disneyland offers two types of access cards both of which provide you and those assisting you priority access to certain attractions. This means that you can prioritise limited energy for doing nice things rather than queuing. Access cards are available from 'City Hall' when you enter the main park.

Easy Access Card 

This pass is for people who are pregnant or who have a temporary disability/debilitating illness. It allows you and one helper priority access to certain attractions. To get this pass, you will need a letter from a medical professional from within the last 3 months.

Priority Card 

This pass, which I used, is for people with mobility, visual, cognitive, mental health, learning or behavioural difficulties. It allows you and up to four helpers priority access to certain attractions. Evidence you can provide to get this pass include a Blue Badge or a signed/stamped medical certificate from within the past 3 months.




Wheelchair / Mobility Scooter Rental

Disneyland offers a manual wheelchair rental service costing €15 per day with €150 cheque / credit card deposit. You do not need to book this in advance you can just visit the wheelchair/ pushchair desk close to the main entrance when you arrive. 

Whilst at Disneyland, I rented a mobility scooter to help me get around. Disneyland itself does not offer mobility scooter rental so the very helpful concierge at our hotel booked it through an external company on our behalf. The scooter was dropped off at the hotel and later collected when I no longer needed it. The hotel was very accommodating and charged it up in their office whenever it was not in use. They also arranged for us to have a room close to reception so that I did not have to walk far to get to it. The scooter rental cost approximately £20 per day. I'm not sure of the company we used as it was booked on our behalf but it is possible to book a whole range of mobility equipment in advance at mobilityequipmenthiredirect.com





Disneyland Paris App

A really useful tool which my sister found was the free Disneyland Paris App (available here). Not only does this provide maps, wait times and entertainment schedules but it also provides useful information about the accessibility of different attractions.

Accessibility indicators provided include:
  • whether there are dimly lit areas
  • whether assistance dogs are permitted
  • wheelchair accessibility
  • whether transfer from a wheelchair is required
  • suitability for people who have difficulty standing
  • suitability for people with visual and hearing impairments
  • suitability for people with debilitating illnesses
  • suitability for people with lower limb atrophy
  • suitability for people with Learning Disabilities
  • suitability for expectant mothers

This app helped my sister pick out a couple of very gentle rides I could go on despite feeling nauseous and dizzy.

While for the most part I found that attractions were well equipped for me to use my mobility scooter in, there were a couple with narrower passageways which made steering a little tricky. It may be best to ask a member of Disney staff about passage widths before entering attractions to avoid getting stuck!



Parade Viewing

Parade time can be quite busy and overwhelming at Disneyland. Fortunately there are several cordoned off viewing areas for those with disabilities. I found that when using this area I had a bit more space and was able to clearly see what was going on without people standing in front of my mobility scooter. The only draw back was that in order to ensure lots of space for disabled viewers, I was only allowed to have one person accompanying me. My sister therefore drew the short straw and had to watch elsewhere on her own.



Disneyland Paris Website

The final useful resource I found was the Disneyland Paris website itself. FAQS and a guide for people with disabilities are available here:
I'd say it is definitely worth a browse when booking and in the run up to a trip.



If you have any questions about my experience that this post hasn't answered, do feel free to get in touch. I'd be more than happy to chat to you about it more :)



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Thursday, 3 March 2016

INSPIRED BY... DONNA OF FEBRUARY STARS


 

I have another interview with someone who inspires me to share today. This one is with Donna, writer of the blog February Stars (formerly Fibro Geek).

Donna is someone who has shown me endless kindness. She first commented on my blog over a year ago and I was blown away that she had taken the time to leave such a thoughtful response. I've since had the pleasure of getting to know her a bit better and loved working with her when I first launched my business, BearHugs.

If were asked to recommend just one blog to someone living with chronic illness, it would be February Stars. Donna has compiled an incredible amount of content and formed a fantastic resource which is not only informative but also uplifting.

I love Donna's positivity and was not surprised in the least when her amazing attitude shone through in her answers to my questions.

_________________________________________________________________________

What are you most proud of?

I would have previously said to you something like getting my first class honours degree or landing my dream job. However, I would say that my perspective has definitely shifted since becoming sick. What makes me most proud is what has ultimately helped me to achieve those past successes and what is helping me to move forward and reach my smaller goals today-- my resilience. I am proud of myself for having that. It's what enables me to make the most out of whatever comes my way and I feel it's what keeps me moving forwards.


Who/ what do you look to for inspiration?

There are lots of things that inspire me. I think what it mainly boils down to is doing things or being around people that bring me joy. I guess it just gets me into the right frame of mind.

For my writing, I draw inspiration from what I am personally going through; the highs and lows and how I can use that to help others. That desire to help others is what inspires me to blog.

I also draw inspiration from other people, especially those who have already walked down the path I want to take. If I see someone doing something that I want to achieve, it inspires me to keep going. I want to know everything about them and how they got to where they are!


When chronic illness feels like a bit of a cloud, what's your silver lining?

The people in my life. I am very lucky to have an amazing family and friends who give me so much love and support. They are like my own personal cheerleaders and will pick me up when I need it. They give me a lot of strength.

I would also add to that the connections I have made through blogging and social media. It's really remarkable being able to "meet" and become friends with people who are going through the same thing that you are (and I count you as one :)). There is a deep level of understanding there and the support is incredible. There really is a wonderful community online.


What would your advice be to someone who has recently fallen ill?

My advice would be to listen to your body and do what you feel you need to do. Don't underestimate the importance of rest in the early stages of illness and try to get out of the mindset of pushing to get back to where you were before; it creates stress and is counter-productive.  I think it's important to accept where you are at the present moment but hold onto the belief and hope that things will get better. It takes time though, learn to be patient. Finally, be open to change; even when it means making tough decisions. Often what we resist the most is exactly what we need to do to allow us to move forwards.


PLACES YOU CAN FIND DONNA



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