You (yes, you) need to read what I have to say about the plastic straw ban

 
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Human beings need five things to survive: water, food, oxygen, sleep and also sufficient warmth so that they don’t get hypothermia.

For many people with disabilities, the total removal of plastic straws would take away one, sometimes two, of these five essentials to stay alive. Before plastic straws were invented, a lot of disabled people either died or had to be hospitalised/institutionalised.

I personally need plastic straws to drink. Also, due to my difficulties with swallowing, I’m unable to eat solid vegetables, so the only way I get the vitamins I need from vegetables is from soup (my Dad makes the best vegetable soups), which I can only eat through a straw.

A lot of abled people chime in right about now with the question “what about the alternatives? What about metal straws or paper straws? Pasta ones or silicone ones? Bamboo? Glass? Acrylic?”

Before I even start to answer why these alternatives aren’t able to be used by many people with disabilities, it’s fair to point out how insulting these questions are. I’d like to ask how you, who have been thinking about this issue for all of a few seconds, somehow think that someone who has been living for years/decades with the reality of having to use straws for food and drink, wouldn’t have thought of this before. Do you honestly assume that we haven’t tried or considered the alternatives? Do we not have the intelligence to think of what you thought of within a few minutes? Or do you think we don’t care about the environment as much as you?

Whenever I write about plastic straws online, I’ve been asked “what about the alternatives?” so often and I sometimes waste my non-existent strength to politely reply to explain why I can’t use each different one. I shouldn’t have to destroy my hands and arms to jab out sentences with my thumb on the screen keyboard of my phone (which is the only way I’m just about able to write anything) to explain and justify myself to you. Even writing a few sentences leaves my hands and arms in tatters, shaking and sometimes temporarily paralysed. The effects last for a long time. I’ll just point people towards this blog post in future.

I would also like you to consider why you are focussing on plastic straws, which are essential to some people’s survival (and are a tiny tiny percentage of the plastic problem in the sea) when there are so many other bigger offenders with regards to ocean plastic. 46% of ocean plastic is fishing nets. So are you going to give up seafood and campaign for other people to stop eating it too? Also, are you committing to stop using make-up (there’s so much plastic in make-up containers and in their manufacturing), balloons and condoms? None of these are essential for staying alive but they’re just as bad or worse for the ocean as straws. Are you always using reusable shopping bags instead of plastic ones? Do you use unpackaged soap instead of shower gel, which comes in a plastic container? Are you going to stop giving plastic toys to your children? Do you campaign again plastic industrial waste and the planned obsolescence of products by companies? If you don’t, yet are treating disabled people as ‘being difficult’ for speaking up about their need for single-use plastic straws to stay alive, then you may want to think about your motives.

I believe most of you have motives that are well-intentioned and maybe have focused on plastic straws to feel like you’re actually doing a little something to help with the plastic problem in our oceans. You might want to ask yourself why you never even thought about the impact of the straw ban on disabled people though and why it never even occurred to you. A bit of self-examination for ableism and for realisation of the privileges that you have as an abled person might be in order.

It also turns out that the straw ban has actually caused companies to INCREASE their use of plastic. For instance, Starbucks, who announced that they were going strawless, have wound up using more plastic in their new lids than they used to in their lid-straw combo. See this link for more information: https://reason.com/blog/2018/07/12/starbucks-straw-ban-will-see-the-company/

Here’s a helpful graphic (made by @sarahbreannep on twitter) explaining why the alternatives to plastic straws are not an option for many people with disabilities, which saves my hands from having to write even more about this:
 
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By all means, stop using plastic straws if you’re able to. But don’t ban them so that people with disabilities can’t access them.

Let me tell you a bit about my parents…

 
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Let me tell you a bit about my parents. They have worked relentlessly hard to care for me so incredibly well for over 13 years since I became seriously ill during my first term at university. They have given up everything for me but frequently tell me that looking after me is their honour and privilege; they never make me feel like a burden.

They go above and beyond to look after me and my needs. There are the basic care needs (which are no small thing, especially as both my parents are in their sixties now and it’s hard work, especially as Mum has a bad back): emptying the commode, cooking food that I am actually able to swallow (lots of homemade soup; Dad makes amazing soup), supplying me with daily essentials and bringing them into my room as quietly and quickly as possible (I deteriorate the longer someone is present in my room) etc. but also things like doing all my admin, dealing with (awful) doctors, replying to any social messages sent to me (I sometimes am able to reply to people on social media but not often or consistently and only a with a very short message). They also have to endure watching me deal with acute, ceaseless suffering day-in-day-out, and daily life-threatening situations.

I think the worst possible thing for a parent is to see their child suffer, and especially when the suffering is so intense and for so long. They have done everything they can to fix it, seen the best doctors, and they must feel completely powerless because they can’t stop my suffering. The constant grief and loss must be overwhelming for them. Nevertheless, they have helped me to achieve my crazy ideas in my multiple fundraising efforts for research into Myalgic Encephalomyelitis and Vascular Ehlers-Danlos Syndrome. I wouldn’t have been able to do this without their physical help setting things up and organising the things that I’m unable to. My current fundraising attempt is here, if you feel like doing something kind: https://mydonate.bt.com/fundraisers/fivebyfive

In 2013, they sold their house in Cleethorpes and moved all the way across the country so that we could live near who we thought at the time was the best doctor in the UK for severe Myalgic Encephalomyelitis (this was before I was diagnosed with Vascular Ehlers-Danlos Syndrome, a genetic life-threatening illness, a rare form of Ehlers-Danlos Syndrome). We moved house again in February this year because the landlord needed his house back!

Any sound or noise for me is agony and causes acute physical distress and deterioration, so my parents spend their lives staying still and tiptoeing around the house when they have to move to use the bathroom or prepare food/drink, and speaking in whispers, so that they don’t make me be in agony and get worse. When moving to this house in February, they spent tens of thousands of pounds (of money they don’t have) trying to make my room soundproof. Soundproofing would have allowed them to try to regain a bit of normality and sanity in their lives (as well as protecting me from noise) because they would have been able to move freely and have family come to visit. Unfortunately the soundproofing didn’t work at all; the builders let us down big time. When roadworks with a pneumatic drill popped up outside our new house days after we arrived, and would be there for weeks, they temporarily moved me to a rental property to get me away from the noise of it, despite the cost. They’re amazing.

Due to even small scents/smells affecting me badly and making it hard for me to breathe, my parents make sure not to use perfume, deodorant, scented soaps and shampoo. They make sure not to use air fresheners and chemical cleaning products in the house and just use natural ways of cleaning. All these things they do and sacrifice for me and do so without complaint. No outside carer is willing to sacrifice any of these things (scented shampoo, soap, deodorant etc) and no outside carer is as quiet as I need it to be and that my parents are for me.

My parents also sacrifice having any family or friends come to visit us at our house because of the noise that would bring. They miss out on attending family gatherings and events as a couple because one of them always has to stay behind to look after me. They miss out on seeing their sons and grandsons as a couple, and not nearly as frequently as they want to because of looking after me. This is a huge loss for them and the source of much grief. They also lose contact or closeness with friends because it’s hard to maintain friendships with all the challenges they face and not being able to have people visit the house or go anywhere together as a couple. They never make me feel bad or guilty about any of this.

These last five months have been extra horrific and exhausting for them (and me). On top of the ambulance journeys for the house moves, which have been physically devastating for me and I nearly died, they’ve had to watch me suffer with a new scary symptom since the end of December. My body is too fragile and my heart too unstable to be moved, even in an ambulance again, so they have been searching and phoning people every day to try to find a doctor/consultant who is willing to help with this drastically life-altering symptom, trying to find someone who understands (and has actually heard of it before!) and would be willing to bring the necessary equipment to the house to do a transcranial doppler ultrasound to get proof of what’s happening to the blood inside my head and neck. Hospital is out of the question in this state (the noise, light, movement and presence of other people in the same room as me would kill me) and far too dangerous for me (often doctors have never heard of either Vascular Ehlers-Danlos Syndrome or Myalgic Encephalomyelitis, and when doctors don’t know about something and have never heard of symptoms like I’m experiencing, they get hostile and suspicious; you can easily end up being sent to a psychiatric ward through their incompetence and ignorance). For over five months my Mum has been searching for help but hasn’t found anyone with the necessary specialism or even someone who is open-minded in dealing with something that they haven’t heard of before (it’s very rare) with a willingness to help. No doctor seems to understand how urgent it is. It’s looking like that until I get to the stage of having a stroke from this new symptom, we’re not going to find someone who believes me. People will help then but not until then. My parents have become increasingly desperate and it just takes up the whole of their lives. They’re so stressed, worried for me and beyond exhausted but they have no choice but to carry on, day after gruelling day.

It has taken me a very long time to write this, tapping out a couple of sentences each day with my thumb on the screen of my phone. I just wanted to be able to say a big thank you to my parents. I am convinced that I won the parent lottery and that nobody could look after me better than they do. I also know that other people don’t realise what they go through and sometimes you have to spell things out to get people to understand. I just want my parents to be happy; I hate being the cause of their misery. I wish that I could be the one looking after them at this stage of their life. Nobody is there to look after them. I love them so much and they deserve so much better than this. They are superstars.
 
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What is Myalgic Encephalomyelitis (M.E.)?

This is when a virus or enterovirus (or an as-yet-undiscovered retrovirus) causes:
• inflammation of the brain, spinal cord and neurons
• immune system deficiency and dysfunction
• mitochondrial malfunction (the body’s energy is manufactured in the mitochondria), which leads to muscle failure (including heart failure), and heavy exhaustion
• damage to and dysfunction of the heart
• dysautonomia
• POTS
• dysfunction of the digestive system, including poor absorption
• extreme sensitivity to noise, light and movement

The hallmark of Myalgic Encephalomyelitis is deterioration upon any slight activity/exertion/movement. Gradually trying to increase your activity can cause permanent damage. The severity of the disease varies greatly. Unfortunately, I have a severe case and am bed-bound and unable to speak. I struggle to breathe and swallow. My heart is so unstable and my condition so fragile that my body cannot be moved.

What is Vascular Ehlers-Danlos Syndrome (vEDS)?

It is a mutation of the gene COL3A1. This mutation alters the structure, production and processing of a protein in the body called collagen. A significant amount of the body is made up of collagen; it provides structure and holds our bodies together. This is why having faulty collagen is such a big problem and why my body is falling apart in so many ways. As you get older, the condition deteriorates. This is why it is getting increasingly difficult for me to breathe and swallow (dysphagia), why I have craniocervical instability, why my eyesight is worsening and why I have faulty heart valves.

The vascular type of Ehlers-Danlos Syndrome, which is what I have, is life-threatening and the majority of people with vEDS don’t live beyond their forties. This is because the blood vessels and hollow organs in a person with vEDS are fragile and prone to spontaneous rupture, due to the defective and weakened collagen.

It is important that paramedics and doctors be educated about vEDS so that in an event of a rupture, patients be dealt with correctly and quickly, which is key to our survival. For example, aortic dissection is pretty common among vEDS patients but it can easily be mistaken for a heart attack so it’s essential that awareness amongst the medical profession be raised.

The launch of my ‘Five by Five’ challenge and how I managed to do it

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The past four months have been brutal. On top of all the ambulance journeys, as I explained in my previous blog post, I can now only lie horizontal with my head touching my pillow for two out of the twenty-four hours in a day because the blood flow to my head gets so cut off and reduced if the surface of my head is touching anything that I start to pass out if I stay on my pillow any longer than that. My head and face get increasingly numb and cut off while I have my head touching my pillow. The rest of the twenty-two hours in the day, I’m straining my whole body and neck into painful and strange positions in order to coax enough blood back into my head to be able to safely go down onto my pillow for two hours. It takes all my concentration. It is a strange feeling being able to actually feel the blood in the blood vessels in your head. The best (but still inadequate) way I can describe it is like after you’ve been sitting on your foot for a long time and it goes numb and then you get the rush of blood back to the foot as the feeling gradually returns. So it’s a tiny bit like that but a much, much slower process. I never regain even 50% of the feeling back in my head, even after twenty-two hours. I’ve forgotten what it was like to be able to rest and have my head on the pillow. Every day I have no choice but to carry on the body-destroying routine of working hard to get enough blood back into my head so that I can safely have the two hours with my head on the pillow without passing out from severely reduced blood flow to the head.

I feel like my body is disintegrating. Given how ill I already was before all of this and how I deteriorate with even the slightest exertion, it has been hell to keep pushing through with the extra physical exertion of being semi-sitting up instead of lying flat, which causes my heart to get even worse. The sleep deprivation has risen to insane levels.

During this time, the idea that I was forming in my head – the ‘Five by Five’ challenge – to raise money for charity, has been the only thing that has kept me going. The execution of the idea seemed like it would be impossible and I knew how much it was going to cost me and pretty much annihilate me but I had to do it. I just had to. Like my friend Tanya wrote to me, ‘you are the only one I know determined enough to be at your worst and decide to do the impossible’.

I’m too ill for anyone to be in my room longer than it takes for essentials (food, water etc.) to be brought in and out but in order to make the ‘Five by Five’ launch video, I had to have my parents in the room for 7 minutes or so. There was also the addition of the light being on and the noise of their voices, all of which are agony for me and cause me to deteriorate. Nevertheless, it was still joyous to see them for the longest amount of time in one go than I had for years and years and, as you can see in the video, I couldn’t wipe the smile off my face, even though I was in extreme pain and physical distress. I tend not to show pain on my face anyway. It has cost me everything and was a one-off but I’m proud that I got through it.

A huge thank you to my parents for making the ‘Five by Five’ launch video possible. Thank you to my Dad for being my voice (I’m unable to speak) and to my Mum for her amazing artwork and for holding the camera phone to film it. Please forgive the mistakes (and the mispronunciation of ‘Myalgic Encephalomyelitis’!); we did the best we could, given that we only had one take to film it in. Thank you to Simon for creating a YouTube channel and uploading the video for me.

So on my birthday, I launched the ‘Five by Five’ challenge. Here is the video explaining it and what it is. I really hope that you all join in and make a video too. This is me pushing back against the darkness, defying everything and choosing to do good, even when all the bad is thrown at you.

 
The donation page is here: https://mydonate.bt.com/fundraisers/fivebyfive
 

What is Myalgic Encephalomyelitis?

This is when a virus or enterovirus (or an as-yet-undiscovered retrovirus) causes:
• inflammation of the brain, spinal cord and neurons
• immune system deficiency and dysfunction
• mitochondrial malfunction (the body’s energy is manufactured in the mitochondria), which leads to muscle failure (including heart failure), and heavy exhaustion
• damage to and dysfunction of the heart
• dysautonomia
• POTS
• dysfunction of the digestive system, including poor absorption
• extreme sensitivity to noise, light and movement

The hallmark of Myalgic Encephalomyelitis is deterioration upon any slight activity/exertion/movement. Gradually trying to increase your activity can cause permanent damage. The severity of the disease varies greatly. Unfortunately, I have a severe case and am bed-bound, struggle to breathe and swallow, and am unable to speak. My heart is so unstable and my condition so fragile that my body cannot be moved.

What is Vascular Ehlers-Danlos Syndrome (vEDS)?

It is a mutation of the gene COL3A1. This mutation alters the structure, production and processing of a protein in the body called collagen. A significant amount of the body is made up of collagen; it provides structure and holds our bodies together. This is why having faulty collagen is such a big problem and why my body is falling apart in so many ways. As you get older, the condition deteriorates. This is why it is getting increasingly difficult for me to breathe and swallow (dysphagia), why my eyesight is worsening and why I have faulty heart valves.

The vascular type of Ehlers-Danlos Syndrome, which is what I have, is life-threatening and the majority of people with vEDS don’t live beyond their forties. This is because the blood vessels and hollow organs in a person with vEDS are fragile and prone to spontaneous rupture, due to the defective and weakened collagen.

It is important that paramedics and doctors be educated about vEDS so that in an event of a rupture, patients be dealt with correctly and quickly, which is key to our survival. For example, aortic dissection is pretty common among vEDS patients but it can easily be mistaken for a heart attack so it’s essential that awareness amongst the medical profession be raised.

Jenny’s 100 Question Quiz in aid of M.E. Research UK and Annabelle’s Challenge – plus there are 10 prizes, including tickets to Harry Potter and the Cursed Child

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Twelve years ago today, I became ill. To mark the day, I thought of a fun idea that will hopefully also do a lot of good.

I have devised a 100 question ditloid quiz to raise money for two charities that respectively fund research into the two illnesses that I have (severe Myalgic Encephalomyelitis and Vascular Ehlers-Danlos Syndrome). Both illnesses are currently incurable so research is desperately needed to find a cure or effective treatment in order that nobody ever has to suffer like this in the future. You can read about how the illnesses personally affect me and what my life is like here.

A brief description of the two illnesses:

Myalgic Encephalomyelitis
This is when a virus or enterovirus (or an as-yet-undiscovered retrovirus) causes:
• inflammation of the brain, spinal cord and neurons
• immune system deficiency and dysfunction
• mitochondrial malfunction (the body’s energy is manufactured in the mitochondria), which leads to muscle failure (including heart failure), and heavy exhaustion
• damage to and dysfunction of the heart
• dysautonomia
• POTS
• dysfunction of the digestive system, including poor absorption
• extreme sensitivity to noise, light and movement

The hallmark of Myalgic Encephalomyelitis is deterioration upon any slight activity/exertion/movement. Gradually trying to increase your activity can cause permanent damage. The severity of the disease varies greatly. Unfortunately, I have a severe case and am bed-bound, unable to sit up and unable to speak. My heart is so unstable and my condition so fragile that my body cannot be moved.

Vascular Ehlers-Danlos Syndrome (vEDS) is a mutation of the gene COL3A1. This mutation alters the structure, production and processing of a protein in the body called collagen. A significant amount of the body is made up of collagen; it provides structure and holds our bodies together. This is why having faulty collagen is such a big problem and why my body is falling apart in so many ways. As you get older, the condition deteriorates. This is why it is getting increasingly difficult for me to breathe and swallow (dysphagia), why my eyesight is worsening and why I have faulty heart valves.

The vascular type of Ehlers-Danlos Syndrome, which is what I have, is life-threatening and the majority of people with vEDS don’t live beyond their forties. This is because the blood vessels and hollow organs in a person with vEDS are fragile and prone to spontaneous rupture, due to the defective and weakened collagen. This is why I have had such a problem with severe uterine haemorrhages.

It is important that paramedics and doctors be educated about vEDS so that in an event of a rupture, patients be dealt with correctly and quickly, which is key to our survival. For example, aortic dissection is pretty common among vEDS patients but it can easily be mistaken for a heart attack so it’s essential that awareness amongst the medical profession be raised.

In my 100 Question Quiz, for which there are ten fantastic prizes available, there are various categories and each question is a sort of word puzzle or ditloid, in which a phrase must be deduced from the initials of each word and numbers in the clue. For example:
8 L on a S = eight legs on a spider
7 C in the R = seven colours in the rainbow
a S in T S 9 = a stitch in time saves nine
2 H A B T 1 = two heads are better than one

How to enter the quiz:

1. Donate £10 via this donation page. Feel free to donate as much money as you can though (but the amount of money won’t affect your chances of winning the quiz). Remember to put your name on your donation and not leave it as anonymous (you’ll understand why in step 3).

2. Do the quiz, which is below.

3. Send your name and your answers to the quiz to this email address 100QuestionQuiz@gmail.com, which will be run by my parents (I’m too ill to administrate). You need to include your name within the email; this name will then be checked against the names on the donation page, to verify whether £10 (or more) has been donated. Any entry that does not pay the money, will not be valid. There can only be one entry per person.

The money raised will be split equally between the two charities M.E. Research UK and Annabelle’s Challenge. The donation page is here: https://mydonate.bt.com/fundraisers/100questionquiz.

You have one month to complete the quiz. The competition ends on 1st January 2017. All quiz entries must be received before midnight on that day. The winners will be announced a couple of weeks afterwards, along with the answers to the quiz.

There are 10 prizes for the 10 people with the highest number of correct answers to the quiz. If there are more than 10 people with the joint highest score, then those people will have their names put in a hat and 10 will be drawn out to decide the prizes.

The 10 prizes:

• Two exclusive tickets for VIP seats to the play Harry Potter and the Cursed Child

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Here are the details of the prize, which was kindly donated by The Blair Partnership (a literary agency that represents JK Rowling):

Exclusive Tickets to the play Harry Potter and the Cursed Child: Parts One and Two.

Based on an original new story by J.K. Rowling, Jack Thorne and John Tiffany, Harry Potter and the Cursed Child is a new play by Jack Thorne. Harry Potter and the Cursed Child is the eighth story in the Harry Potter series and the first official Harry Potter story to be presented on stage.

It was always difficult being Harry Potter and it isn’t much easier now that he is an overworked employee of the Ministry of Magic, a husband and father of three school-age children. While Harry grapples with a past that refuses to stay where it belongs, his youngest son Albus must struggle with the weight of a family legacy he never wanted. As past and present fuse ominously, both father and son learn the uncomfortable truth: sometimes, darkness comes from unexpected places.

The play is performed in two parts – so this prize is to see both parts consecutively on a date in 2017 to be agreed with the winner. This prize includes 2 tickets for VIP seats.

These tickets are non-transferrable, non-refundable and not for resale and may not be used in any commercial promotion, marketing or event.

The prize does not include transportation or accommodation.


 
• A Lulu Guinness Lips clutch bag, kindly donated by Lulu Guinness – www.luluguinness.com

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• A Kindle Paperwhite and an Amazon Fire TV Stick – these two prizes were both kindly donated by Dixons Carphone

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• A voucher for one game at HintHunt for a three-person team, kindly donated by HintHunt – www.hinthunt.co.uk

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HintHunt® is a new simple and fun live escape game, designed for small groups of 3-5 people. You get 60 minutes to climb a mountain of puzzles and mysteries in a tiny room. The goal is simple yet challenging: get out in time! Else … you could be trapped inside forever! During this engaging and challenging game team members truly live and breathe in union for an hour.


 
• A voucher for Afternoon Tea for Two at The Swan Hotel in Southwold, Suffolk (kindly donated by The Swan Hotel)

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• A guided tour of Winchester Cathedral with your own private tour guide, kindly donated by Winchester Cathedral

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• A gift voucher for 5 graze boxes, kindly donated by graze – www.graze.com

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• A gift card for a 7″ Sponge cake from www.sponge.co.uk, delivered anywhere in the UK, kindly donated by Sponge Cakes Ltd

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Sponge cakes are an award winning online cake company delivering scrummy hand-made Sponges to your door next day anywhere in the UK with prices starting from just £7.50 delivered.

Their Sponges are made using proper ingredients, with love and care in small batches. They are mad, crazy, bonkers about SPONGE and hope that you will absolutely love every mouthful.


 
• A painting by Michael F Rumsby, kindly donated by the artist himself – www.michaelfrumsby.com

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• The GCHQ Puzzle Book

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So, have fun. It’s for a good cause. And you might win one of the fantastic prizes. If you get stuck, you can always have a go at the quiz with your family and friends over Christmas. Good luck!

My 100 question quiz:

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Round 1: General

1. 12 L of H

2. S W and the 7 D

3. 80 D A the W

4. 366 D in a L Y

5. 26 L in the A

6. 1 R to R T A, 1 R to F T, 1 R to B T A and in the D B T

7. 3 H of C

8. 4 and 20 B B in a P

9. 6 W of H the 8th

10. 206 B in the H B

11. a R B 2 T

12. 10 G B H on the W

13. 118 E in the P T

14. 1 E and 1 T among the 3 G

15. 88 K on a P

16. 18 H on a G C

17.
W S W 3 M A?
In T, L, or in R?

18. 90 D in a R A

19. 7 W of the W

20. 100 Q in this Q

Round 2: first lines from books

21. M and M D, of N 4 P D, W P to S T T W P N, T Y V M.

22. I I a T U A, T a S M in P of a G F, M B in W of a W.

23. I W the B of T, I W the W of T

24. All C, E 1, G U.

25. In a H in the G T L a H.

Round 3: film titles

26. 3 M and a B

27. 16 C

28. 9 M

29. H to L a G in 10 D

30. 13 G O 30

31. 4 W and a F

32. 2 W N

33. 7 Y in T

34. 101 D

35. 7 B F 7 B

36. 10 T I H A Y

37. The L 1

38. I A N 4

39. 27 D

40. 17 A

41. 50 F D

42. S for 10

43. O 11

44. The 12 T of A

Round 4: Star Trek

45. L L and P

46. M it S

47. The N of the M O the N of the F

48. S P to S

49. R is F

50. W S, M S

51. A, T B W H!

52. 5 C: J T K, J-L P, B S, K J, J A

Round 5: Star Wars

53. I H a B F A T

54. L the W W

55. A Y a L S for a S?

56. H M O-W K. Y M O H.

57. T N M, I a S S

58. The F is S W T 1

59. U the F, L

60. L it U, F

Round 6: Harry Potter

61. H S of W and W

62. P 9 and 3 Q

63. 3 D H: the E W, the R S and the C of I

64. I S S T I A U to N G

65. 4 F of H: G G, R R, H H, S S

66. E P

67. 9 W: A, M, B, C, P, F & G, R, G

68. 4 C of the T T: V K, F D, C D and H P

69. The M of E

70. I M N T L

71. 7 P on a Q T: 3 C, 2 B, 1 K, 1 S

72. A K

73. H of H: A P W B D

74: 12 G P

75. N! B! O! T!

76. W C all H B K — or W, E.

77. I D N D to D on D and F to L

Round 7: song titles from animated Disney films

78. I M a M O of Y

79. N in N

80. W I S an E F

81. Y B in my H

82. C Y F the L T

83. I S the L

84. F the F T in F

85. G the D

86. 1 J A

87. O U a D

88. G H the O

Round 8: Doctor Who

89. W W T W

90. A-Y!

91. W Y L a J B?

92. B T A C

Round 9: The Bible

93. 929 C in the O T

94. 10 P of E

95. 5 L and 2 F

96. 12 S of J

97. The T: F, S, and H S

98. 30 P of S

99. 5 B in the B with 1 C: O, P, 2 J, 3 J, J

100. 9 F of the S

———— END OF QUIZ ———–

 
[NB I’ve been gradually writing this blog post since August by jabbing out one or two sentences per day with my thumb on the screen of this iPhone. Even doing it slowly like this has made my hands, wrists and forearms deteriorate badly. So I probably won’t be able to pick up my iPhone for a long time after this so won’t be able to check my email, twitter or facebook.]

All the things that you never wanted to know about my life with an acute chronic illness

I’ve lived within the four sides of my single bed for 11 years. I haven’t seen outside apart from the times I’ve been in an ambulance.

I’m unable to sit up so when nature calls, I have to slide onto the commode beside my bed whilst doubled over so that I don’t pass out.

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I’m unable to speak. Up until last Autumn, I used hand signs and gestures to communicate and I also used my finger to make the shape of letters on my duvet to spell out words. Now that my hands, wrists and arms have become so bad, even this isn’t possible and I’m completely locked in.

I’m too ill to have people in my room so the only time I see anyone is when one of my parents brings in water/food/empties the commode. Twice a year (my birthday and Christmas), my family come in for a few minutes to give me my presents and take photos. Those few minutes cause months of agony and deterioration but it’s worth it to see them.

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I severely struggle to breathe now. I have to work so hard to keep breathing.

My food has to be very soft (e.g. scrambled egg) and has to be cut into tiny pieces for me because my chewing and swallowing muscles are badly affected. I can’t hold cutlery; I used to be able to use a plastic spoon until last Autumn (when my hands, wrists and arms deteriorated because of what I was forced to do in hospital) so I have to use my fingers now, which are very shaky from the exertion and overuse.

My water is in small plastic water bottles with straws because I’m unable to lift them.

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I press a buzzer a few times a day when I need water bottles refilled/food/the commode emptied.

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My heart is so unstable and my condition so fragile that my body cannot be moved.

I’ve been too ill to have a hair wash or a proper bed-bath for 3 years. It’s a horrific choice between being alive-but-dirty OR dead-but-clean. To state the obvious, it’s disgusting, embarrassing and I hate it. But it’s better than dying.

I wear ear defenders most of the time – sound is agony. Sound is a physical activity that makes me deteriorate.

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My curtains are closed 24/7 – light is agony. Light is also a physical activity that makes me deteriorate. There was a crack of light coming through the curtains for the photos on my birthday but it had to be quickly closed up afterwards.

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All these things pale into insignificance compared to the torture of constant acute symptoms. I won’t go into all my symptoms again (you can see them here). Being on the brink of death is not fun. Understatement of the year.

Twitter and Facebook used to be my lifelines. I couldn’t communicate a fraction of what I wanted to or properly reply to people but I was able to write a few sentences every couple of days or at least press the ‘Like’ button to show someone that I was thinking of them. Now that my hands, wrists and forearms have deteriorated so badly from being pushed and pushed too far, every time I pick up my iPhone and write something (e.g. this blog post), I lose the use of my hands, wrists and forearms for about 3 months afterwards and cannot pick up my iPhone at all during this time. This means that I am completely isolated and cut off; I no longer have the solace of the internet – I can’t check my email, twitter or facebook.

I do have an amazing friend (the incredible Tanya Marlow) who writes an email to me every week and expects nothing in return. She knows that I can’t check my emails anymore so she also sends the email to my Mum so that it can be printed out and given to me. My life is dark but her emails have saved me many times over. She reaches into my life and makes such a difference. It’s nice to know that someone cares about me enough to write to me regularly and tell me all about their life, thoughts and feelings. I’d forgotten what it was like to have a current friend as opposed to friends from the past. I always reply to her emails telepathically even though I can’t do so physically.

I’m able to watch some television in the evenings, which brings me a lot of joy. Looking forward to it sustains me through the day and keeps me going. At the moment I’m rewatching Heroes (Heroes Reborn reminded me how much I enjoyed Heroes when it was first on the telly so I asked for the DVD boxset for my birthday to rewatch it all).

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I am frightened for the future. How is this all going to end? My parents won’t be here to care for me forever. I can’t afford to let myself think about this though. I can’t be emotional or mourn what I’ve lost (everything!). I just have to focus on surviving and staying alive. It’s the only way to cope. I can mourn when this is all over. If it’s ever over.

Today is M.E. Awareness Day. If you’re able, please consider either making a one-off donation or setting up a monthly donation to M.E. Research UK. If your workplace has a Payroll Giving scheme, you can donate via this.

Our dog, Harry, is wearing a forget-me-not crown for M.E. Awareness Day (!):

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