Should We Have A Right To Die?

When I was 16, we lost a family member. She looked well, but the effects of age were catching up with her. It was excruciating watching the wonderful, warm personality we knew slowly fade away in front of our eyes. As much as she tried, she wasn’t able to hide her suffering anymore. After months of decline, she became too weak to even sit up and the decision was made. As I was so young, I stayed at home and my mum went along to be with her. My mum held her, stroked her hair and thanked her for always being there for us. She fell into a deep sleep and eventually, she took her last breath. She was our childhood Rhodesian Ridgeback, Cheshie.

Beautiful Cheshie
I’m not telling you this to make light of a serious issue. When we made the difficult decision to let Cheshie go, we weighed everything up. It was inhumane to put Cheshie through further pain and suffering. After her 17 years of loyalty and service, she deserved peace not pain.

 

Back in 2015, the assisted dying bill arrived in the commons. Under the bill, a terminally ill person would have been able to request assistance with ending their life if diagnosed as having less than six months to live. The argument from the opposition that this change of law would be a “slippery slope” and would be readily abused by carers and medical professionals. The bill was overwhelmingly rejected by MPs.

Currently, under UK law, any person that aids a suicide is at risk of a lengthy 14-year imprisonment. A week ago, Noel Conway from Shrewsbury took a stand. He suffers from motor neurone disease and wants to die a dignified death with the support of a doctor, legally. He has brought his case to the High Courts and will likely spend his final months fighting the courts for this right. He is compos mentis, making the decision on his own, though with the full support of his family, yet he is still legally not allowed.

Being aware of my own bias on the subject, I ran a twitter poll to get a social temperature (albeit within my own echo chamber). Interestingly, the results align almost exactly with the official statistics: 82% of British public support assisted dying for terminally ill adults. So with such an overwhelming majority, why did 72% of our politicians vote against it? With one person travelling to Dignitas from the UK every week and the numbers rising, they can’t ignore public opinion much longer.

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Omid, a 54-year-old man has an incurable multi-systemic atrophy disease that affects his nervous system. His symptoms are similar to Parkinson’s with speech, coordination, and movement all being gradually lost. He suffers greatly each day. Yet despite this, he has many years of life left in him yet. In 2015 Omid attempted to overdose but was unsuccessful. It was after this attempt that he was moved away from his family and into a nursing home so he no longer had the ability to try. More than 300 terminally ill people like Omid end their own lives every single year. Behind that statistic is an army who are physically unable to commit the act because their illnesses prevent it. They are sentenced to suffer until their body physically can’t cope longer.

By denying this change in the law, they are condemning people like Omid and Noel and all the terminally ill citizens in the UK personal autonomy. We are sentencing them to spend their final months suffering greatly until their bodies physically can take no more. For me, as an animal lover, it boils down to one simple question; Why do we afford our pets more dignity in death than our family?

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Daydreaming in the Dordogne

Bonjour mes amis! After a rather chaotic last few weeks, I finally found the time to put together a post about my little holiday to France.

Fun fact: My family is French and I spent a number of years living there when I was little. We lived in Fontainebleau for a couple of years but spent most of the time in South West France in the Dordogne. We left France when I was 4, but I still spent almost every summer there until I was a teenager. Then work commitments and poor health, I haven’t been back in almost 7 years.

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After a difficult few months past, and multiple surgeries looming, my mum and I decided that a trip to France would be exactly what we both needed! Now I’m not a huge fan of flying and neither is my mum, so we decided to drive down. Growing up we did the drive pretty often, so the 12-hour drive wasn’t an issue. Plus it meant that we didn’t have any weight restrictions on our luggage, so naturally, I packed everything but the kitchen sink.

After a long drive, we arrived on Sunday morning. We headed into Eymet, our closest town, to grab some breakfast. The entire town was dressed for Tour de France that was arriving a few weeks later. There were ribbons and bunting everywhere, and incredible Ralph Steadman-esque illustrations in every single shop window. Eymet is an old bastide town and you can see remnants of the past throughout the tiny town.

There are defensive walls and corner-castles littered around, which makes for a nice contrast to the modern cafes and restaurants that fill the town.  download-49download-55

A couple of days after we arrived, a 10-day heat wave came through and it was 35-39C on most days. Not wanting to slowly bake ourselves, we scheduled our days around outings in the mornings and days at the house. Most days we visited Eymet for lazy mornings with pastries and coffee on the square. Other days we ventured further afield and visited other nearby towns.

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One of my favourites days was visiting idyllic Issigeac. Another medieval village, Issigeac is full of winding streets and ancient colombage buildings seemingly held up by sheer determination. There are hidden passageways throughout the town, where you can find funny little statues scattered around (see the ear below).

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Although the heat was *almost* unbearable, it was an incredible holiday. I had the time to paint every day, I finished four books, I got to spend some quality time with my nearest and dearest, and I ate more cheese than should be humanly possible – “Why, sometimes I've believed as many as six impossible things before breakfast.”.png It was exactly what the doctor ordered.

Thanks for reading, see you next week!

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3 Tips for Travelling with a Disability

Despite having a disability my whole life, mobility has only begun having a significant and unavoidable impact on my life in the last couple of years. This made my recent jaunt to France a totally different experience than any holidays I have had before. Normally I would be off exploring first thing in the morning, finding hidden treasures around the area and really getting a feel for it like a local. This time I could barely manage morning outings to get coffee and pain aux raisin. Fortunately, I was still able to have a wonderful holiday but there are some simple steps I will be taking on every future holiday.

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Fail To Prepare, Prepare To Fail

The world is not made for people with disabilities. Despite the many regulations now stipulating accessible facilities, things change slowly. Most places in London are not accessible, so it’s unlikely that a little holiday destination will have got the memo (or have enough disabled visitors to “justify” the changes). So what can you do? Make a list of your requirements – whether that’s accessible bathrooms, no steps/stairs, wet room required etc. – and get searching. There are some wonderful tools where you can plan fully accessible holidays easily in one place (list below). If you are keen to do it yourself and really get a feel for your holiday, then be prepared to contact the various companies/venues/hotels that you are interested in visiting. Despite information on websites, I have found these can very often be out of date, so it’s best not to rely on them entirely. I find emailing in advance is the best policy. Emailing is great because if there is a language barrier then I can use google translate ahead of time, plus it ensures that you have an email documenting your queries should you ever need it!

Accessible Holiday Search Website I personally have not used these so I would love to hear from any of you that have done!  

Enable Holidays

Can Be Done

Disabled Holidays 4 U

Keep Your Chin Up!

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Whether it’s a lift being ‘out of order’ or issues with a pre-arranged support, things will not always go to plan no matter how much you plan ahead. Add the fact you are in an unfamiliar setting, possibly not speaking the language, it can be frustrating and very disheartening when things go wrong. You can’t plan for everything but keeping a positive attitude when these things happen is key. I don’t mean to sound patronising. I say that from a place of genuine experience. When I am in a lot of pain, if the smallest things go wrong it can really impact my mood. When I went on holiday I decided that I would not let this happen and chose to stay positive when things went wrong. I still got annoyed, but instead of letting it bubble up and bring down my whole day, I brushed it off and tried to think about a resolution/workaround!

Get Travel Insurance

Fingers crossed that by following the previous steps you can avoid any situations that might cause you any problems, but you can’t plan against everything. Having good travel insurance – specifically for those with pre-existing conditions is best – will protect you should the worst happen whilst you are away from home. Always check out MoneySavingExpert so you can find the best deal. I managed to get full cover insurance for £16 this time, which allowed me to rest easy whilst on holiday. No one should have to worry about finances when they are in a hospital!

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Disability is a spectrum of needs and abilities, but these tricks should be suitably helpful for everyone. But figure out what works for you and don’t be afraid think outside the box. If you have any clever tips and tricks that you use when travelling, I would love to hear from you!

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‘Los Angeles’ My Little Box – Review

My favourite subscription box arrived on the day I left on holiday so I couldn’t collect until a couple of days ago. So do excuse this rather late in the month post!

Yet again, My Little Box has absolutely nailed it. This month’s box was themed ‘Los Angeles’. As soon as opening you see the lovely pink and teal pale hues burst out. The detailed design of these wonderful little boxes constantly surprises me. Even down to the product description leaflets, it all has a unique design.  I realise sexy package design is a lame thing to get excited about but after 7 years in marketing, I have seen enough lacklustre design to last a lifetime. Good design *should* be appreciated!

 

 

Full to the brim of wanderlust-inducing products, this is my favourite MLB that I have received so far. I wish I had received it before I went on French travels, that little tote would have been a great market day bag. I think my favourite item in the bag though is the Burt’s Bees cleanser. It smells incredible and leaves my skin feeling fresh, but not totally dry like other cleansers I’ve used. I actually like it so much that I ordered more and I’m going to use that as my nightly cleanser!

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This month, my box included:

  • ‘Take me away’ Tote
  • Beaded Tassel Bracelet
  • Los Angeles Illustrated Map
  • Burt’s Bees ‘Soap Bark & Chamomile’ Cleanser
  • Palmers Coconut oil body lotion
  • MLB Coco Sunrise Hair Oil
  • Stickers!

I have another very new and exci-tea-ng subscription box that I will be sharing with you soon. Tune in for that post in the next couple of weeks!

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Dealing with “Helpful” People

Bonjour from France! The last week has been amazing – exactly what I needed – and I can’t wait to share some posts about it with you when I’m back in the UK next week. For now, though, I wanted to talk about something I have been dealing with this week whilst on holiday, but come across often back home too. I’m talking about “helpful” people.

I want to clarify I am not talking about people that help generally. I am incredibly fortunate to have a wonderful partner, friends and family who are very tuned into the kind of help I need and as someone who struggles to ask for help, it is something I am thankful for every day. What I am talking about, is the type of help you don’t – or rather wouldn’t – ever ask for.

I personally describe disability to others as a masked bandit. It will steal something different from each of us and to varying degrees, but it will ultimately take away our abilities and the freedom of choice. Because of this, the things you can do become incredibly important. Before becoming physically disabled, I was always a ‘doer’. It was a large part of how I defined myself and it was very wrapped up in my personality. This lead to a very difficult adjustment when I suddenly wasn’t so able to do so much. I didn’t want to accept that I wasn’t the “same person” (or rather, I didn’t feel like I was) and it shook me to my core. It took some time, a few months of talking therapy, but I am now able to live a much happier life, within my physical limits. I haven’t given up by any stretch, but I am now aware of the activities that are worth the energy, or those which I should ask for a bit of help with.

These helpful people are doers themselves. They assume that you need help – perhaps because you are struggling or perhaps just because you have a disability – but they want to just ‘do’ it rather than waiting to ask. What these ‘doers’ don’t always appreciate, is that there is often an emotional attachment to activities for disabled people. Moving your wheelchair/walking stick without asking, taking your bag away from you so they can carry it, imparting medical advice when you’re not a doctor, ordering you to sit down whenever you try to move/do something – Without asking permission, this kind of help can feel very intrusive and overbearing.

People with disabilities are very aware of their own abilities. If we are attempting something, we can almost certainly do it. But if we can’t, give us the chance to ask for that help. If you repeatedly have people taking control and doing things for you, it can be at most disempowering and at least incredibly frustrating. If you have fallen into any of these, don’t worry! It’s an incredibly easily remedied problem: just ask.

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A Childhood with Ehlers-Danlos Syndrome

 

Some of you will have read the About me page and learned a little about my journey. Others of you may have read one of my first posts sharing how the ‘Please Offer Me a Seat’ blue badge has impacted my life as a Londoner with Ehlers-Danlos. Today, to mark the end of Ehlers-Danlos awareness month, I wanted to take a deeper dive into my journey with EDS, starting at the beginning.

I was an unstoppable ball of energy from day one (not much has changed honestly). I was forever trying to trick my mum into thinking I had, in fact, had my afternoon nap (I used to mess up my hair and pretend to yawn lots) so I could keep playing. When I was 4, I broke my mum’s nose jumping out of a black taxi onto the pavement. I hunched down and “jumped like a kangaroo” out of the car… just as my mum was reaching down to help me out. I was always the only girl allowed to play with the boys at school because I was faster than most of them. No matter how many times I was told by adults, I just couldn’t manage to ‘slow down’ or ‘be careful’. This boundless energy meant that I very often ended up hurting myself and subsequently spent a good amount of time visiting A&E.  My family actually used to joke that I was like Maggie from the Simpsons; As soon as I stood up, I fell over again.

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Flushed cheeks from running around, as usual!

Whenever I did take a tumble, it would always be the ankle/knee/shoulder/wrist that had taken the force when I fell that would be extremely painful. Without fail though, nothing was ever broken and I always told it was bad soft tissue damage, sprains, etc. and sent home. Doctors always noted my hypermobility but said I would grow out of it when I got older. At one point, a doctor who was treating me told my mum that I had been brought into the A&E by her or my teacher at least once a month for the last year – a new record he said.

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Living up to the feisty redhead stereotype!

 

When I was 6, I began having recurrent plantar fasciitis. Every time it would subside, I would return to school and it would be set off again. Eventually, my doctor began to question whether I was genuinely in pain. When we next visited, he grabbed my little foot and pulled out a HUGE needle. He told me that I would have to have steroid injections in my feet now because of the pain. I was terrified and I certainly didn’t want the injections, so I told him I that I was better and didn’t need the injections. It was at that time that I stopped telling people, particularly doctors when something hurt and began internalising my struggles.

I coasted through my next year’s pretty well. I still had problems; I was always catching bugs and infections, I got frequent sprains from seemingly nothing and I had constant pain for some unknown reason. Often my hypermobility would be noted by doctors but was ruled out as the ‘true’ cause. My mum stood by me through all of it. Eventually, the doctors started saying that it was in my head and that my mum shouldn’t indulge me anymore.

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I began having more serious problems in my teens. Once I tripped over and when I stood up and my shoulder was intensely painful. I was late so rushed to class and tried to pull myself together. I tried hard to stop crying but I simply couldn’t and eventually, my teacher (who was a real ass) sent me out. I went to the nurse who quickly noticed my shoulder was dislocated and sent me to the local hospital. I had months in a sling, a lot of physio, and few steroid injections but they had marginal improvement. The shoulder continued to sit slightly dislocated at all times, despite the MRIs showing everything structurally was intact. The doctors just couldn’t understand, so they just discharged me.

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A few months after initial dislocation, still in a sling with dislocated shoulder. (Ignore my poor fashion choices).

My shoulder problems didn’t go away though and truly became the bane of my existence. It was only by pure chance one day that I happened to see a different doctor that happened to be my friend’s mum. She knew me from the times I had visited their house, but obviously, we had never discussed my medical history! She reviewed my notes going back to age 5 and realised something wasn’t right. She referred me for an urgent diagnostic surgery to assess my shoulder instability. They found abnormal muscle patterning and combined with other diagnostic criteria, Ehlers-Danlos Syndrome Hypermobile was confirmed. Finally, everything made sense. I wasn’t making it up and I could now receive the specialised care that I needed. It was such a huge relief after such a long journey with so many difficulties.

Unfortunately, my story is not unique. Due to the lack of knowledge about Ehlers-Danlos syndrome, combined with outdated medical views, this leads to a huge portion of people with Ehlers-Danlos syndrome going undiagnosed for years. It’s estimated that 1 in 5000 people have Ehlers-Danlos syndrome, though we don’t know the true number because of the lack of appropriate diagnosis. Those years of not receiving the correct treatment or the necessary guidance on things like how to avoid injury mean that we are doing irreparable damage to our bodies. By raising awareness we can help children with Ehlers-Danlos syndrome avoid unnecessary injury, we can help doctors learn what to look out for and ultimately we can improve the lives of people with Ehlers-Danlos.

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You can learn more about Ehlers-Danlos UK here !

And please consider donating to Ehlers-Danlos UK and help them continue the amazing work they do!

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How To Manage Brain Fog

Today I wanted to talk about a symptom that I think many of you will understand. I live with it every day and personally, it drives me crazier than many of my other symptoms. I can handle the dislocations. I can handle the pain (mostly). But the dreaded brain fog drives me absolutely crazy! I know this is also a big problem for many of you out there, so I wanted to share some tips on how to combat/manage the dreaded brain fog.

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Continue reading How To Manage Brain Fog