Feb 28, 2020 | Awareness, Doctors, Opinion, Treatment
The tide has turned on chronic pain management. Anyone who follows the media in any capacity will have seen this shift particularly in regards to opioid medication with regular mentions of addiction, and the harm it can do. What generally is getting left behind in this discussion is patients with chronic pain and the harm untreated pain can also do. The very few appointments I’ve had with Pain Consultants in the last few years have also had a tone change. It’s gone from a dismissive ‘there’s nothing we can do for you so you need to live with it and manage the pain as best you can with the medications you are on’, to a very similar one that includes a long lecture about the need to reduce the medications I’m on. Ah, because of the side effects? No, that’s not the reason. Because I’m abusing them? Not at all – I’ve taken the same medication at the same dose as prescribed for many years. No alternative is offered. I’m not told about any of the latest research or studies on pain reduction. I’m simply told it would be best if I reduced my pain relief. I then counter with a question about quality of life – how am I meant to function with an incredibly painful condition with no pain relief? It’s a question that never gets answered. I have been under the same Pain Clinic since I developed chronic pain at age 15 and I’m now in my 30s. So I have now been in constant, crippling pain for over half my life – and in that... read more
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... read more
May 30, 2015 | Daily Life
I had so many plans for May – which is Ehlers-Danlos Syndrome awareness month, and it’s just all gone by in a flash of bad health, hospital appointments and glass making. Fused glass making is a new hobby I’ve got into, and I’m really enjoying it. If you’re interested in seeing my new makes I have a facebook page and a Folksy shop (the UK equivalent of Etsy). I’m also running a competition to win a Dotty Suncatcher at Facebook as soon as my page reaches 100 likes. It’s difficult starting a new page from scratch, so any support there would be really appreciated. I’ve been making jewellery for awhile, and have wanted to try glass making as something that would go nicely with it (i.e. making pendants/jewellery out of glass), but also being able to branch into something different like dishes, candle holders, etc. I find the jewellery making market quite saturated, and difficult to stand out. Not that I would ever be well enough to make a business out of my crafts, they all remain hobbies, but it’s still nice to sell the odd thing to be able to pay for my glass or beads! I’ve spent most of my month having medical appointments, including having some awful tests on my bladder – which I will never ever have again. They all came back clear for blockages/cysts, which means it’s down to spasms probably caused by the Ehlers-Danlos Syndrome, so the next step will be medication. I’ve also been to Cambridge to visit the biggest sleep specialist clinic in the UK. I’ve had problems with my sleep since I was... read more
Apr 21, 2015 | Awareness
Having written about organ donation in The Huffington Post in February, I was contacted by the makers of a new documentary called A Love Worth Giving to ask if I would help to spread the word about their Kickstarter campaign. The documentary follows a newly married couple Sam and Luke. Sam has Cystic Fibrosis and needs a double lung transplant urgently. The documentary follows her battle as she has to deal with false alarms and her health going downhill. The makers have started a Kickstarter Campaign to fund the post-production and release of the film. I’ve watched the trailer and already it looks incredibly professional and well-done, and looks to be a heartbreaking story. (You can watch this by clicking on the link to the Kickstarter.) The makers of the film have also set up a page on their website where you can submit a photo of one of your loved ones – if they have either died waiting for an organ, or if on their death they donated organs to help save other lives. This is a really lovely touch, and it would be great to spread the word to get the film made, and to hopefully help change attitudes about organ donation. While 9 out of 10 people in the UK support organ donation, only 3 out of 10 actually sign the register. And many family members override their decision on their deaths. This has to change urgently to many more lives can be saved. There are only three days to go to get the documentary funded. Please dig deep and spread the word! Edit August 2015: I’m really pleased to... read more
Apr 16, 2015 | Opinion, Vents
Dear Ford Foray Dealership in Taunton Nine months ago my friend started the process to get a car on the Motability scheme. A Ford C-Max – which has a fabulously tall boot which is perfect for fitting the hoist in for her wheelchair. Her current car is much smaller, and she has to break her electric wheelchair up into six pieces to fit it in, which is an exhausting process when you have multiple chronic conditions including Juvenile Idiopathic Arthritis, Fibromyalgia and Hypermobility. Motability decided to be awkward when approving her application, and she had to fight with them for seven months before they agreed that the C-Max was the right car for her needs, but finally she was given the go-ahead, the order was placed and she began counting down the days! Not only would it have a hoist, but Motability (through their charitable grant-giving scheme) paid for some optional extras to make her life easier including an automatic boot opener, parking sensors and keyless entry. These extras are essential to someone living in chronic pain, and can make a world of difference. As luck would have it, the car was already built with the optional extras she required, so it was reserved for her. Having the C-Max also brought about other exciting possibilities for her, such as being able to arrange visits to friends and a short break away, that she’d been restricted from doing in her current car, which due to its size has to have the back seats down in order to fit her wheelchair in. The car was brought down from the north to... read more
Apr 3, 2015 | Coping Methods, Daily Life, Doctors
Have you ever had pain? I don’t mean a headache, or even a broken leg. I mean long-term, unrelenting chronic pain. ‘Chronic’ typically means pain that lasts more than six months, and is generally past the point you’d have expected to heal. It doesn’t mean it’s psychosomatic. It could be an injury that keeps recurring, something that has healed incorrectly, or you have a condition that causes constant pain. Acute pain doesn’t mean the pain is worse, it simply means that the pain has lasted a short period of time. You can have pain at different levels of intensity – whether chronic or acute. Before I had chronic pain myself, and for a long time after, I believed there were painkillers that could stop it. However, for the vast majority of people this isn’t the case. I won’t say there isn’t anyone who has found a painkiller that takes all their pain away, but for most people the best they can hope for is a reduction in pain levels. Something that turns down the dial, as it were. Pain medication is a complicated area with no one-size-fits-all approach. There are lots of different types of painkillers, such as those that reduce inflammation, medications that work on nerves, antidepressants that also help with pain, and opioids which bind to specific receptors in the body . Further within the types of medications are even more options. It can have an immediate or slow release effect. You can take it by pills, patches, topical application, liquid, under your tongue, injection, and so on. Once someone has exhausted the over-the-counter options, it can be a... read more
Feb 24, 2015 | Daily Life
Got some new goodies this week! It’s sad when you get excited about a new pill holder, but there you are! I really like the colours, and the amount of boxes there are to split things up. Sometimes I find I don’t take things as often as I could, which then increases pain levels. So having it set out like this will show me if I still have more to take in a day. At the moment I’ve just got paracetamol in there, but got plenty to add. You can take each day out, so you only need to carry one section around with you at a time. Next are two items to help my neck. The base of my neck burns hot pretty much all the time, probably from inflammation. I picked up this cool pillow pad at a mobility shop, as sometimes it’s so hot I struggle to sleep. I thought this might help, particularly in summer. Similarly this is designed for the head, but is the right width to wrap around my neck when it’s burning to try and soothe it. I’ve had a bit of a saga to try and get some orthotics sorted. My first referral was rejected by my GP, with a note it had to come from a consultant. It took me five months to see one, then another three months to get an appointment. So, nine months in total and I’m sitting in the orthotics office, only to say I should have been sent to the hand clinic to see a specialist! Argh! Lucky it didn’t take as long this time,... read more
Feb 20, 2015 | Coping Methods
Today is 1000 Voices for Compassion, where bloggers, writers, artists, or anyone, have been asked to create something on the subject of compassion. You will be able to see all the amazing content being released on the 1000 Voices blog or on twitter using the hashtag #1000Speaks. The subject I have chosen to talk about is one that many people with chronic illness find difficult in some way, and that’s self-compassion. Living with a disability can be really difficult for a whole myriad of reasons, but in truth, we are often the hardest on ourselves. I frequently find there is a specific personality type amongst people living with painful and exhausting conditions. It’s ironically the opposite of the image pushed by the media of lazy, feckless people who can’t be bothered to do a day’s work. They are hard-working, creative people who push themselves to the limit. People who struggle to say no, to others, and to ourselves. Saying no to myself is definitely something I struggle with personally, and so I have been working on trying to recognise the achievements I do make in a day, even if it’s something simple. Such as taking a shower when I felt like death. Or responding to an email. Anything I was able to do, no matter how I felt. A few months ago I was at an Ehlers-Danlos Syndrome support group, and this topic came up. We were talking about achievements, and I shared my new mindset of trying to feel good about the little things, even if I only got a fraction of what I wanted to achieve done. Then... read more
Feb 13, 2015 | Awareness
I remember signing up to be an Organ Donor. They used to have those little credit-card sized cards you filled in, and kept in your purse. I went through each organ and ticked or denied permission depending on how ‘weird’ it felt. Later I realised I was being silly – I would be dead, and there was nothing weird about saving or prolonging a life, or giving someone sight. Even if it felt odd ticking the box to say they could have my corneas. 9 out of 10 people in the UK support organ donation, yet only 32% are on the Organ Donor Register. Every day three more people die as they wait on the register to be matched, and only 1% of people that have died in hospital are then able to go on to donate organs. These are horrifying statistics that show why every person who signs up to the register is needed. A new campaign has just been launched in conjunction with Heart Transplant UK called ‘Give Your Heart This Valentine’s Day‘. The website allows users to send their loved ones their ‘heart’ on a Valentine’s E-card, which will also register them on the donor list. Stacie Pridden is 24 and has Pulmonary Hypertension. When diagnosed she was given three years to live, but she’s now been waiting two years and nine months for both a heart and lung transplant. Stacie has been matched three times, but each time the operation has been cancelled at the last minute due to problems with the organs discovered at the last minute. I can’t image how that must feel. For a successful... read more
Feb 10, 2015 | Awareness
Lipstick to Walking Stick – Can you have both? Karolyn Gehrig, like myself, has Ehlers-Danlos Syndrome. It’s a genetic condition that’s caused by a fault in the connective tissue – the stuff that basically holds us together. While the condition has various types, there are some symptoms that are common across the Ehlers-Danlos spectrum. It’s usually incredibly painful, exhausting, and impacts every part of the body from the joints to the organs. And there’s no cure. Many of us spend endless time in and out of hospital. Last April Karolyn tweeted some selfies. Her and everyone else, right? But her photos are very different to the usual backgrounds of partying and having fun with friends. She’s framed by treatment rooms, face masks and the wires attached to her body. She’s sporting her silver ring splints (worn to reduce joint dislocations) and uses her walking stick as a prop. My favourite is her skin-tight dress that’s covered in pills. She tags these selfies as #hospitalglam, and they certainly are. Since Karolyn’s tweets many others have joined in; posting selfies in waiting rooms, after operations or of a high heel peeking out of a hospital gown. So why has this resonated for those of us with disabilities? Having a chronic illness can be scary, and all-consuming. You can feel like you’ve lost control when your body won’t do what you ask. Decisions are constantly taken out of your hands – about your mobility, ability to work, social life and relationships. And at the centre of that loss is the medical world. Most people don’t get to choose their consultants, their treatment... read more
Hi, I'm Jade.
I'm in my early thirties, and live in the UK. I have multiple chronic illnesses with my main condition being Ehlers-Danlos Syndrome. This blog is about finding hope amongst the frustrations.
You can contact me at: info@chronicchronicles.co.uk
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