by The Chronic Chronicles | Aug 19, 2015 | Awareness, Daily Life, Fundraising, General Posts
Why rescue?
I am a huge advocate of rescuing cats from shelters rather than buying them from breeders or pet shops. Every type of cat, of every age and every breed are available in a shelter somewhere. Only want a pedigree kitten? There will be one, somewhere, in a shelter! So why spend out hundreds of pounds when shelters are having to put down animals they can’t home? (Though really good shelters have no kill policies except due to severe illness.)
Pretty much every stereotype about shelter cats are untrue. They’re just as loving and adorable as any other cat out there – and the great thing about shelter cats is the staff/volunteers will want the match to work – so will evaluate the pet to check how they are with other animals, children, or specific people, and what kind of home would suit the cat best. Some are happy to be left home alone for longer periods of time, others need more attention. Many like to roam outside, while a few want to stay indoors pets. They will also flag up if there are any specific health care issues. It means when you take a cat home with you, you can have far more confidence that the pet will work with your personal circumstances, rather than taking a gamble.
Another reason to choose a shelter cat is it will keep more money in your pocket. Having an animal isn’t cheap, but when you pay the fee at the shelter, it usually covers a whole range of costs including neutering/spaying, vaccinations, flea and worm treatment, and the pet should also be micro chipped as well. My local shelter charges a £60 fee which covers all that, yet my vet charges £60 for a spay alone. What a bargain!
My “rescue” cats
Despite being a huge proponent of rescue animals – none of my three cats are actually from a shelter. But I didn’t buy them either. Two were strays that were found in not-so-great situations, and no possible owners came forward after searching. Even if owners had been located, I wouldn’t have been happy giving them back as they both showed signs of neglect in different ways. My third cat was a kitten that was dumped with someone who had large dogs, so couldn’t keep them (the original owner asked her to look after the kitten for the weekend, then never came back).
My first cat, Button has come on such a long way. When I first got him I used to say he was ‘scared of life’ – jumping at every sound, and running away in terror if a man came near him. It took me a long time to gain his trust, but he’s now the most loving cat, always wanting cuddles and attention.
Bailey, the kitten who was dumped, is full of personality. He will only come to you when he chooses to, so you feel all the more privileged when he honours you with his presence. He gives adorable little head nods to people he’s feeling affectionate towards.
Pepper is my little eternal kitten – half the size of Bailey, who is almost half the size of Button! She’s full of sass, keeping the two boys in line, and constantly begging for treats – and is often found in random places (the bin, a cupboard, a box that’s half the size of her, and so on!)
Why Poppy’s Place?
Poppys Place is an animal rescue that have two bases – one in Colchester and the other in Dartford. They’re 100% non-destruct, and often take cats in that are hard to adopt. The love and care they have for the animals they rescue shines through everything they do (just read Sybil’s story here).
What am I doing to help them?
I’ve made a set of six fused glass coasters each with a different cat image on it, and I’m going to give 10% of every sale to Poppys Place. You can find the coasters on the Sparkly Place Fused Glass Facebook page.
They will make a lovely addition to any cat lovers home. And don’t worry, I haven’t forgotten dog lovers – they will be another set for them, with the same 10% going to Poppys Place.
by The Chronic Chronicles | Nov 23, 2014 | General Posts, Treatment
First of all sincere apologies for the lack of updates lately. It’s been such a busy time, that writing has fallen by the way-side a little.
I just thought I’d give you a small update about what I’ve been up to lately.
I recently wrote about the process of obtaining a Personal Budget to employ a Personal Assistant. I’ve had that in place a couple of months now, and it’s been brilliant. She’s been able to help with a range of things, from the obvious helping with care, but also driving me to appointments, getting my wheelchair out, cooking, sorting out areas I haven’t been well enough to do in my home, etc. It’s taken quite a bit of stress out of my life and I’d recommend it to anyone.
Medically I’m still very much in no-man’s land. The Pain Clinic have declared me incurable and untreatable, and discharged me. Apparently they only help people who will get better, they’re not interested in actually managing pain. My specialist consultants also are no longer able to keep me on their books due to over-subscription, so I’m consultant-less. It’s quite a scary place to be.
My GP has been trying to help with this situation, and wrote to a local Rheumatologist who lists himself as a connective tissue specialist on the hospital website. He rejected my referral, and wrote back saying, “I have no interest in managing Ehlers-Danlos Syndrome.” Although he did refer me to a Hypermobility Specialist Physiotherapist instead. Silly, silly me actually got my hopes up and thought she might be interested in working with me to move forward. Instead without any examination she declared there was nothing she could do, so I’d have my final batch of Hydrotherapy and that would be it. She then spent the rest of the session basically telling me I should be perfectly okay in the mornings, as other people with the condition manage. I tried to explain I have severe insomnia and sleep issues, and am a total mess in the mornings, but she wasn’t interested.
I then finished my final block of Hydrotherapy, which I really enjoyed. I do find the warmth means I can do much more than out of water. I would love this on a rolling-basis, and will keep trying to pester the hospital to make this happen.
I’ve also just had a sleep study done, but I’m waiting for the results. It was a machine I had to take home, that strapped to my stomach and chest, a tube went up the nose (nice!), a mask for your mouth and finally a clip for your finger. They have to rule out Sleep Apnoea before they’ll send you to a sleep consultant, but I am a little worried they’ll tell me it’s not Sleep Apnoea, and then not let me see anyone at all. Hopefully I’ll get the results soon, and this long-term issue is explored.
I have been lucky enough to find a private physiotherapist, however, that has an interest in Ehlers-Danlos Syndrome – and he genuinely does. It’s a lot of money, but the only treatment I’m now getting. He hasn’t promised he will be able to help me, but he’s going to try. If I can even maintain what little mobility I have, that would be a start. I’m diligently doing all the exercises he’s giving me (not a hurriedly printed out sheet, but thoughtfully targeting specific issues) and he’s easy to contact if things go wrong to provide advice, and alternative exercises. He really seems to know his stuff, so that’s been great.
I also recently took part in a study on Ehlers-Danlos Syndrome that’s all about what triggers the condition in the first place (obviously it’s genetic, but there is often an occurrence in your life that makes it much worse, often puberty, having children, an accident or something else. Others just have it severely from birth, so it’s exploring all of that.) The research also looks at flare-ups and the triggers.
The research sounds really interesting, and when it’s published it will obviously go into medical journals, but particularly GP and physiotherapist journals, to catch front-line staff.
One thing I truly believe is that the fight for decent rates of diagnosis lays almost entirely with GPs and Physiotherapists. They’re the ones that have to see signs, and see past one problem joint, or a history of chronic pain without a solid diagnosis and make a referral to a specialist. Once they have that awareness, only then can diagnosis rates climb.
I’m also preparing for Christmas, and this year have decided to have my first ever real Christmas Tree! I’ve also been making festive bunting with the help from my Personal Assistant, and it’s the first year in a really long time I’ve been genuinely excited for Christmas!
Please comment below to tell me your news, and whether you’re looking forward to Christmas or not?
by The Chronic Chronicles | Aug 30, 2014 | General Posts
Fabulous Blogging is a Google+ community run by Julie DeNeen, of the website also titled Fabulous Blogging, which gives tips and assistance to bloggers and website owners. The Google+ community is separate from the website, and is aimed at bloggers helping each other, and sharing resources.
The community used to host Blog Critiques, but a lack of time meant Julie was unable to keep doing it, so I recently took over.
Bloggers put themselves forward, and every Wednesday a new blog is put forward for critiques for one week.
The more people that take part, the better it will be – as a range of opinions from different people make for richer feedback.
If you’d like to take part, please email me at info@chronicchronicles.co.uk.
Here are three buttons to put on your blog to promote the critiques, but also to remind you to visit us each week to take part! Please link them here: https://plus.google.com/u/0/communities/102936376054695383340 The new critique will be pinned to the top of the community each weel/
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by The Chronic Chronicles | Aug 15, 2014 | General Posts
Today Rena McDaniel and I have swapped blogs!
Read her post on Felty’s Syndrome here at The Chronic Chronicles: ‘What in the world is Felty’s Syndrome?‘
Read my post on her blog The Diary of an Alzheimer’s Caregiver: ‘How my life has changed since having Ehlers-Danlos Syndrome’
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by The Chronic Chronicles | Aug 4, 2014 | General Posts
I thought it would be fun to do something a little different, and picked a random ‘getting to know me’ questionnaire.
1) Do you have a middle name? Yes.
2) What was your favourite subject in school? English, History and then later Politics, which I then did a degree in.
3) What’s your favourite drink? Diet Doctor Pepper, but I’m trying to give it up. I’m allergic to most squashes/juices, and don’t drink hot drinks. I’m trying to just drink water, but it’s difficult. I’m doing quite well on my water-quest at the moment, but haven’t made the full leap. I rely on the caffeine to wake me up.
4) Favourite song at the moment? I like Troye Sivan’s new song Happy Little Pill.
5) Summer or winter? Summer all the way. I struggle in the heat, but it’s nothing compared to the pain of winter, and I despise snow. Don’t get me wrong, the morning it snows and everything is clean and white is beautiful, but then it represents being trapped from going out, as I had a nasty fall once, and now I’m a total wimp about it, even in my wheelchair. Plus the sun always improves my mood, and makes everything seem brighter.
6) Do you participate in any sports? No. I am looking forward to swimming as soon as I have a PA employed.
7) Favourite Book? I really like The Name of the Wind/The Wise Man’s Fear by Patrick Rothfuss, and I can’t wait for the final book in the trilogy to be released.
8) Favourite Colour? Raspberry pink.
9) Favourite perfume? Anna Sui – Sui Dreams, but I believe it got discontinued this year sadly.
10) Favourite holiday? My mum and I went to the New Forest when I was about 18. I have a list of places I want to visit in the UK, and we managed to visit a number of them including Oxford, Bath, Bournemouth and Stonehenge, and I loved them all. I can no longer drive for long periods, so holidays are very difficult. Sometimes just a night away somewhere nearby is nice though.
11) Have you graduated High School? No, but I finished secondary school! We don’t ‘graduate’ from that in the UK, it just comes to an end.
12) Have you been out of the Country? When I was 2 I went to Tenerife with my parents. My first memory is from that holiday – watching a mother with two sons playing on a basketball game, and wanting to join in. I’ve also been to France three times – twice on school trips, and once for a week for a holiday when I was 10. I would love to travel more, but it’s so difficult now. I still hope to, one day!
13) Do you speak any other Languages? Sadly not. I wish I could, but my French teacher wasn’t exactly inspiring and I had no aptitude for it, but I do believe we leave it much too late in the UK to introduce a second language. It should be started in primary school.
14) Favourite Animal? Cats – and I have three.
Button and Bailey
My little cat Pepper sleeping in a bead box.
15) Do you have any siblings? No.
16) What’s your favourite store? No specific shop, but something crafty, or even better one that sells beads! I generally hate shopping in actual shops though, but love online shopping!
17) Favourite Restaurant? I really like Old Orleans, although many of them have shut down. There is also a Chinese restaurant where I live that’s really nice.
18) Did you like school? No. My school was pretty dire, and I really struggled with it. However, I believe it was the circumstances, and if my school had been better, with engaging teachers I would have enjoyed it, as I do like learning. When I finally got to a better Sixth Form College taking subjects I wanted to, it was much better. I’m glad I got through both college and university though, as my health issues hit me badly between school an college. Had it been any later in life, my health would probably have prevented it happening, and I’m so glad I was able to live away from home, and have that experience.
19) Are you mostly a clean or messy person? Horribly messy, I’m afraid. I manage to create mess no matter how hard I try.
20) Favourite Movie? It’s really hard to pick one, there are so many I like for different reasons. I really like The Green Mile, but there are probably much better picks I can’t think of at the moment.
21) Favourite TV show? Veronica Mars will always be at the top of the list. There are many others I love though – Firefly, Breaking Bad, Battlestar Galactica, Dexter, etc.
22) PC or Mac? I’ve never actually used a Mac. I have nothing against them, but it would confuse the hell out of me to switch to one now.
23) What phone do you have? Google Nexus 4
24) How tall are you? 5″11
25) What do you order at Starbucks? I don’t drink coffee, and rarely drink tea. If I had to go into a Starbucks, I’d probably get a hot chocolate. I think I’ve been into a Starbucks once in my life, and only because it was the only place to go nearby.
26) One thing in your closet you cannot live without? I really struggle with most trousers, because I find the band really painful on my lower back. I live in thin PJ bottoms, and only change into something else if I’m going out/seeing someone. I can only put up with it for a short period of time, however.
27) What’s one thing most people probably don’t know about you? When I in Year 2 (about 7 years old) I accidentally stabbed myself in the hand with a pencil, and the lead broke off. You can still see the little piece of lead in my hand. I’m hoping one day the magical powers contained within will activate.
28) Name one thing you want to do before you die… to be truly content.
29) What’s one food you cannot live without? I have a real weakness for crisps.
30) What quote/phrase do you live by? I like the phrase ‘Home is the nicest word there is.’ Home is always my sanctuary.
31) What’s your most listened to song on itunes? I don’t have iTunes, so I don’t know what the answer is. One album I go back to a lot is Mika’s, and the two songs I listen to most are Happy Endings, and Any Other World.
32) What kind of style would you define yourself as having? I don’t think I have a specific style, but I do like to colour coordinate and match my jewellery, shoes, clothes and walking stick together!
33) Favourite number? 7
34) Hobby? Jewellery making.
35) Two Pet Peeves? I really struggle with ‘noises’ – so someone who taps, or makes a loud noise when they eat, or plays around with things near them or coughs will drive me mad. And also people who don’t indicate when driving.
36) Guilty Pleasures? I watch a lot of guilty pleasure TV shows, such as Judge Judy, Dance Moms, Sister Wives, etc.
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Do you have a getting to know me post? Leave your links below!
by The Chronic Chronicles | Jun 9, 2014 | General Posts, Hobbies
A few days ago I stumbled across a thread on Mumsnet written by a lady who had suddenly lost her three-year-old daughter very recently. She detailed her heart-wrenching grief and the weeks following since it happened. Her agony was palpable through the screen and it made me want to do something for her – anything.
I then saw that someone mentioned a Woolly Hug was being made for her, and so I dug further to find out what it was. It turned out to be that a community of crafters have got together to make blankets for people who have been bereaved – usually having lost a child or a partner. First the person is asked whether they wish to receive one, and if they agree a list of specific colours, hobbies and interests are listed and each person knits or crochets a 6 inch square.
People with all different abilities take part, from complete beginners to those that have been doing it for years. Plain squares are just as wanted as someone who has painstakingly created a beautiful image of something from the theme. For those who want to help but aren’t crafty, there is also a way to donate either money or wool to those that can. The project is amazingly well coordinated by a few people who also receive all the squares and out of them create a beautiful blanket.
I believe the blankets are a perfect expression for those who have that same feeling of wanting to do something to help. You can’t take their pain away, but you can show you care. And then in time that blanket will become a lovely keepsake for the person that has lost someone and hopefully provides some measure of comfort.
The group also take part in other worthwhile causes such as Angel Hugs for the Brompton Hospital in London where they make white blankets for babies that have passed away; Billie’s Blanket Project to create blankets for children with cancer in low income countries; The Little Hug project which again makes blankets for children and babies who end up in hospital that the family can keep; Angel Teds which are two identical teddy bears, that enable a family to bury one with their baby and keep the other; the Chernobyl Children’s Project for children living closest to the radiation; as well as doing regular fundraisers for charities such as MIND, SANDS or Winston’s Wish.
I found the whole thing so inspiring that I’ve decided to give knitting a try. I have so many things I want to learn and have a whole room full of craft stuff – but I’m hoping knitting won’t take up as much space as jewellery and card making and it can contribute to some really amazing causes.
Even better the Woolly Hugs has been picked as one of Mumsnet’s Giving Week organisations. They have a Just Giving page here and they will match any funds given up to £25,000.
The wool that works well for the blankets costs anywhere between £3.50 – £5.50, plus it costs approx £2.80 to post a ball if it’s been donated. Every penny helps them provide materials to members who can’t afford to supply their own. If you miss the Just Giving Fundraiser, they always accept direct donations.
Woolly Hugs can be found on Facebook and their website is here and here.
Has anything ever inspired you to start a new craft? If you’re a knitter – what are your favourite resources? Any tips for a beginner?
And if you’re inspired to make something for the Woolly Hugs projects, please let me know!
For anyone inspired to start knitting here are some resources I’ve found helpful so far:
How to Tie a Slip Knot
How to Cast On
How to Knit Stitch
by The Chronic Chronicles | May 20, 2014 | General Posts
When my Grandad was young, he went to live with his Aunty Sue and Uncle John, and they had a dog called Prince.
They lived in a small village near Manchester, and everyone knew Prince.
Every morning the dog would walk Uncle John to the train station, then head to the centre of the village where there was a bus stop next to fields. Prince would spend an hour wandering and sniffing about this field, until on the hour, every hour he would head back to the bus stop and sit and greet everyone getting off the bus. At the end of the day he’d head to the train station to meet Uncle John after his day at work and again greet everyone getting off the train. So everyone knew Prince.
They spent a lot of time training Prince with food. You could put some meat down and say, “Wait” and he would until he got the command to go ahead. One day they were about to go into church and Uncle John put some meat down. “Wait,” he told him. He was suddenly called away, and afterwards headed into the church service. It wasn’t until two hours later when they were heading out the church the family spotted Prince still sitting next to his treat, waiting. My Grandad’s sister rushed over to him to give him the command to eat, and put him out of his misery!
When Prince died they buried him in their garden and put up a stone with his name and surname on. Later, they moved away from that village – and my Grandad moved to the south of England. No family members remained in the village. Over the years the cottage they lived in was knocked down, and the garden became open to the public.
My Grandad is now 92, and last week received a phone call from his younger sister to say that she’d just taken a trip to the village, and had looked around the area her brother used to live. She’d found the garden, and Prince’s gravestone still standing.
To her surprise, there were fresh flowers on the grave, and it was well tended. To remember the dog that person must had been around my Grandad’s age.
No one knows who it is – but they obviously had fond memories to still be visiting him around seventy years later. How lovely is that?
Not the grave in question!
by The Chronic Chronicles | May 14, 2014 | General Posts
Do you have a phobia?
I do, along with 13% of the population. My phobia is that boring, common one – spiders. Even writing the name makes me go uuuugjfhdhdns. (That is a word associated only with my specific fear). And I can’t even say the word for the bigger type without my heart pounding.
I often wish I could swap my fear for something else… like a shark! You never come home and be like, crap – there’s a shark in my living room. But of course it could be worse, such as fearing birds, which you can’t avoid.
So – here are three really annoying things about phobias:
1) Being told that you’re silly or irrational.
I don’t think I’ve ever told someone that I have a fear of spiders without them giving me this gem back:
“You know they can’t hurt you.”
I’m not sure what I’m expected to say back? “Oh my god. You’re right. You’ve just cured me.” I know the fear isn’t logical, I know they can’t hurt me (in the UK at least.) It doesn’t help. (Also, the follow-up that always seems to be, “They’re more scared of you.”)
2) You’re told a bunch of anecdotes about your object of fear.
As soon as I’ve been stupid enough to confess, I always, always get the stories. Like the time they had a particularly awful experience with one, or the last time they had one somewhere horrible and I want to say ‘What part of me telling you I fear them says to you let’s have a bleeding chat about them?!’
3) Articles about a specific fear use a photo to illustrate it.
Who do you think is interested in your article about arachnophobia? It’s probably people with it, hoping to get some tips to make the fear go away. So why an earth would you then go ahead and have a huge unavoidable picture of a spider to illustrate it, meaning anyone with the phobia has just thrown the paper across the room to make it go away.
In the past I’ve had some hypnotherapy to try and get rid of my phobia, but after two sessions I went into the waiting room, and jumped at something black out the corner of my eye, and thought, hm, not so sure this has worked.
I know where my phobia comes from – my mum. Yep, it’s all her fault! She too has the same phobia, but I think mine has surpassed hers, in that she can usually manage to pull herself together to get the vacuum out while I’m still having a meltdown in a room far, far away.
A lot of people conflate dislikes and phobias, for example many people would say they dislike spiders, or other insects. I personally dislike brown envelopes. But a phobia takes it on to another level. I think about spiders every day, am checking for them, getting anxious about them and jumping if something tickles me. Just writing this I’m constantly checking my surroundings, my heart is thumping, my breathing quickening and am on high alert. Having said that my reaction to encountering them can differ – it depends on if I feel I can be ‘saved’ from it. If I’m with someone I know can deal with it, I usually react, and then quickly remove myself from the situation and pull myself together. If I’m alone, it’s particularly big, or I feel trapped by it – we are talking full blown hysteria.
But I also know a lot of people have it much worse – they can develop severe stress and even agoraphobia trying to avoid their phobia completely. Many also avoid therapy believing at some point they will be made to confront their fear directly.
I was talking to a hypnotherapist about it last week, and he was explaining how common it is to ‘inherit’ a phobia. It usually happens at a young age, where you see the parent react to whatever the fear is. At the age it happens they don’t usually have the skills to properly analyse the situation and decide it’s not rational to fear it, they simply trust that their parent is reacting in the correct manner.
So I asked him where my mum may have got her phobia from, as neither of her parents are phobic. He explained that phobias often develop from just one situation – where something has made you jump; an object/animal reacts unexpectedly or you encounter it during an already stressful situation – which heightens the risk of it becoming a phobia.
Now this kind hypnotherapist has offered to give me a free session, and take a different approach to the previous hypnotherapist – and is pretty confident he can reduce my fear. He has told me I may never be the greatest fan of spiders, or even like them – but he should be able to stop the fear.
I’m keeping my fingers crossed, and will let you know how it goes!
Do you have a phobia? What of? Have you managed to get rid of one in the past, and if so – how? What annoying things do people say to you when you tell them what your phobia is?
by The Chronic Chronicles | Feb 10, 2014 | General Posts
Credit to: Michel Meynsbrughen
www.prestonotes.c.la
I belong to some Ehlers-Danlos Syndrome groups on Facebook, and they can be a fantastic resource for information. I wouldn’t know half as much about this complex condition if I didn’t have that connection to others living with it. Today I found out just how powerful groups such as these can be.
It started when a member posted a video of a lady on YouTube called “My Naked Protest.” In the video a lady called Kateryna sits in her chair, naked – and explains that she has been left without care for about a month – and cannot look after herself.
She is now covered in pressure sores and rashes, and doesn’t have any pain medication for her Ehlers-Danlos Syndrome. (She also has brain injuries, Autism and spinal cord injuries.) She has not been able to bathe for a month, and the last caregiver she had washed her clothes in detergent she’s highly allergic to – making her even more ill, which is why she sits there naked. She’s also now having to try and rehome her two cats – one of which is a service animal, as she can’t take care of their medical issues. Making her bed is also impossible, and the sheets are causing her agony without the right pressure relief pads on it.
She explains why she has lipstick on – knowing already that people would judge her for such a thing. She had put it on a few days previously to make herself feel better, but then the carers had failed to show up as promised, so she’d been unable to wash it off.
And so – after being totally abandoned by the care agencies, and after phoning constantly asking for help, and being told over and over that they’ll be there tomorrow – she makes one last desperate attempt to get help. When you have to take your clothes off to get help, something has gone horribly wrong.
The video was published on the 8th January, so she still had a wait – but when the video was posted in an EDS group, a few people jumped into action. Members called to report the problems to Adult Protective Services. Others called the police.
The police visited her – and were appalled by her situation, and made their own report to Adult Protective Services. They brought food for her, food for the cats and toilet paper, and even made her bed. Someone asked a local pizza shop to donate a meal – which they did, along with some large bottles of water. Her medical insurance company saw the video and have arranged for alternative care from tomorrow.
What’s terrifying is that this situation is repeated across the world. So many people with disabilities are hidden away, suffering without carers in place – struggling just to get by.
While this is an awful story – the silver lining was that it was lovely to people pulling together to get help in place so quickly and I hope the next care company don’t let her down again so badly.
Kateryna would like her story to be passed around so others do not suffer as she has. I hope she has a happy ending.
by The Chronic Chronicles | Oct 22, 2013 | General Posts
Living Well with Fibromyalgia is an online magazine written by and for people with the condition, and published by the fabulous website FibroModem. They are currently looking for people who would like to appear on the cover. It’s a great way to represent the normal people living with the condition, as well as get your chance to be a star!
You need to submit your photo by the 1st November to contributions@fibromodem.com. Full terms and conditions can be found here.
Good luck!
by The Chronic Chronicles | Jun 3, 2011 | General Posts
Living with chronic conditions isn’t easy. I have started this journal to hopefully connect with fellow sufferers, to education people, to let off some steam, and to post things of interest to those of us living with disability.
Anyone is welcome and I appreciate comments.
