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.
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
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 time nothing has
changed. There have been no new treatments offered after exhausting the very
little allowed Physiotherapy and Hydrotherapy on offer. I personally spent many years and a lot of
money trying every therapy I could find – from exercise-based to stretching,
sticking needles in me, to weird off-beat ones, ones that target the mind and
many in-between. The NHS, however, has
offered the same few inadequate options.
sure research and studies go on in the field of pain – I don’t keep up with
them at all. This may seem strange to
those without pain – but it would simply be a heartbreaking way to spend my
time. Even if there is a miraculous breakthrough, having that get through all
the trials, work for all patients with pain, be funded and offered by somewhere
I can access are all huge steps to climb.
judgement always feels like it’s on the patients to be doing something
differently. Self-management. How I’ve come to loathe that term. If cards were dealt to chronic pain patients
– self-management should just be one in their hand, along with Specialist
Consultant, Psychological Support, Care Needs, Equipment, Treatment Options,
Medication and I’m sure you can think of many others. What it feels like
instead is the NHS has either run out of cards to give or have taken the rest
away, so the patient gets left with one single option of self-management and
are told to like it, or lump it.
many of those other cards ripped away from me, but I’m still clinging on to my
medication card. I feel judged for doing so and more importantly, I feel
scared. Every time a new report comes out about opioid medication and addiction,
I wonder what the impact will be on chronic pain sufferers. Of course addiction
happens, and I’m not suggesting it’s an issue that should be ignored – but
instead it’s those of us with incurable painful conditions simply being left
out of the equation instead.
such amazing advances taking place in medicine, but the knowledge we have of
both pain and pain relief still feel so basic.
How much money and research actually takes place in creating non-harmful
should not follow the same approach as the US that has villainised chronic pain
patients. It seems many Pain Clinics in the US now have a blanket ban on
prescribing pain relief, and will not take patients that have existing
prescriptions. For the very few that do allow medications, they will often make
patients sign a contract with them that has numerous restrictions such as
spot-check urine tests and the fact the patient is simply not allowed to take
anything other than their prescription. While it may seem reasonable on the
surface – this can include patients having to refuse pain relief after
accidents, operations or similar. People
with complex conditions can metabolise medications differently, and I’ve seen
cases where people who took what was prescribed having their prescription
revoked because their urine test either showed not enough or too much in their
system even though they were taking what they were supposed to. Other patients have had to stop taking
cannabis or CBD oils used legally that they found helpful because their contract
had a blanket ban on them.
Not only do
patients find the contracts stressful and coercive (i.e. they have to sign them
to receive any pain relief) a 2010 review also found that evidence was weak
that these contracts actually reduced misuse of medications.
personally believe it should be basic care to receive adequate pain relief, and when it’s treated this way the
relationship between patient and doctor simply becomes both negative and
fearful. An article in the British Medical Journal states, “One systematic
review suggested that addiction occurs in 8%–12% of individuals taking prescription
opioids, but most data in the review derive from the USA and we have no
definitive figures for European populations.” So not only are a lot of fears of
addiction coming from data in the US where the addiction rates are simply
higher, then even taking the figure from the US of 12% it still means a huge
majority are taking the medication correctly and as prescribed.
both chronic pain and Pain Clinics in the UK are an underfunded and
underresourced area. Just taking my local hospital alone five years ago the
clinic had eight full-time consultants, two pain nurses, a pain psychologist
and numerous support groups and pain management groups that were run
weekly. From that list, all that remains
is one part-time consultant. The rest have
simply vanished. Yet rates of chronic
pain patients and their needs have not gone away.
If the NHS wish
to reduce the use of painkillers they need to offer well-funded Pain Clinics
that can offer an array of services and alternatives in return. They can’t
remove both the clinics and pain relief and expect patients to just ‘get on
with it’. The result will simply cause
far more of a burden on other medical and care services as patients deteriorate,
and there will almost definitely be a massive increase in chronic pain related
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.
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.
Teal Dish with Clear Detailing, Spotty Suncatcher and Black and Gold Pendant
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 15 – from severe bouts of insomnia, sleep patterns all over the place, horrible levels of fatigue, day-time sleepiness, and unrefreshing sleep. I got put in the wrong clinic – I should have seen the consultant as it’s the EDS causing the problems, and the autonomic dysfunction and adrenaline issues that go along-side the condition. Instead I got put in the nurse-led insomnia clinic, where they give sleep hygiene advise, such as go to bed at the same time, have a dark room, etc. I know. I’ve had this problem for twelve years, I’ve tried all the basics. This visit was an end-of-my-tether, absolutely desperate need for real medical help. Luckily the nurse did seem to understand my point, so I’m going back next month for a sleep study test which will hopefully be a start, at least.
For the last year I’ve been trying so hard with exercises tailored towards my condition. For sometime I’ve stumbled along seeing physiotherapists who know nothing about my condition, and having a six-week block of hydrotherapy every few years. So sometime ago I decided to put my foot down, and get some real help.
I found a physiotherapist who specialises in EDS, a rarity indeed. His clinic is in another town, but the way he does things means I don’t have to visit that often – he gives me lots to keep going on my own, and does progress checks. I also started doing 1-2-1 Pilates sessions. I’ve tried this a few times – joining a class, or going to the physiotherapy-led Pilates sessions at my local hospital. Both were total disasters, and were aimed at people way healthier than me. Even the hospital ones which I thought were for people with injuries were awful – as most people in the sessions had one problem area – a bad knee, a bad shoulder. Sadly that’s way above my level, as I can’t stand for more than a few seconds, and have problems with every joint and muscle group. So I would just end up half-collapsed in the corner, rather than having effective assistance.
1-2-1 has been great – the instructor has tailored everything towards my condition and problem areas. It’s all on the mat, so no standing at all – and she breaks everything up so I’m not concentrating on one area for too long, which always leads to a flare up. What I do is very basic compared to a healthy person, but between the physiotherapy, pilates and more regular hydrotherapy, I’ve had lots of improvements physically – more muscle control and strength. Sadly it’s not translated into any pain relief at all, which has been incredibly frustrating as that’s obviously why I’m doing it. No one can tell me why it hasn’t helped in this way, but I’m not going to give up – although it really should have helped even a little by now, so I’m not sure it ever will. Hopefully it will stop things getting worse, and help prevent additional injuries though, so it still has a place.
My last piece of news, good this time, is that I’ve now completely given up my huge vice – Diet Doctor Pepper for just under six months. I’ve been trying to kick that habit for years, so I’m thrilled. I’m now a water and ice kinda gal.
So that was May. Hopefully June will bring more glass making, less medical appointments and lots of warm weather.
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 say this project did get funded, with 380 backers pledging£15,435. As of this month the documentary is complete, and I can’t wait to see it! The documentary will have its world premier at the 2015 Rhode Island International Film Festival – which is excellent news. Well done to them!
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 Taunton ready for my friend to collect. She then received a call from the dealership to say they were having problems registering the car, so the pick-up would have to be delayed for a couple of days. She agreed, but then received a second call on Monday to say that they’d realised why they couldn’t register it – another dealership had sold her car.
That she’d waited months for, with all the extras Motability had paid extra for.
She was very upset, as you can imagine – and then Ford stuck the boot in even further, and informed her that because the C-Max is being relaunched, there is only one other car in the country available. She was told she’d have to wait another month for it – and it wouldn’t have any of the extras she needed included. This also meant all her plans for having a holiday, and visiting friends suddenly couldn’t happen either, as they were all planned for this month and aren’t possible in her current car.
How could this have happened? How could a dealership have sold a car that was ordered through the Motability Scheme, with lots of extras to make a disabled person’s life easier?
And how can the dealership think offering a car without all those extras be okay? That’s NOT what was ordered, and not what Motability have paid for.
The Motability scheme has been around since 1978 and 3.5 million cars have been leased through it – surely Ford should know what they’re doing by now?
Would a customer who was purchasing directly be treated this way?
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 difficult decision to go to the doctor to ask for something different. It shouldn’t be. Pain deserves to be managed as well as any other symptom of a condition, but there seems to be far more judgement intrinsically linked. Perhaps it’s due to the fact pain is invisible, or maybe because it’s hard to comprehend the impact of when pain becomes chronic. Those feelings of judgement can also be internalised – that you’re not the type of person to pop a pill. That other people manage without. That it’s not healthy.
I remember once having an assessment by a Physiotherapist. In my area, they have something called a Spinal Pathway, so anyone wanting to see a doctor to have treatment for back pain has to be assessed by a Physiotherapist first. My GP had referred me as she felt an appropriate course of action was to see a consultant to discuss having some joint injections into my spine. After talking to me for a couple of minutes, the physiotherapist declined my request. I asked why, and he responded, “You don’t seem to be screaming out in pain for them.”
I could only sit there in disbelief. Pain is subjective, and very often when you have chronic pain, the amount of pain you’re in doesn’t show on the outside. If someone healthy woke up with the level of pain I live with on a daily basis, they’d be straight into Accident & Emergency begging for help. The fact that I’m not crying or screaming, and may even be upbeat and smiling is not because I’m brave, or special, or have amazing pain tolerance – it’s just that I’ve been in pain for 13 years straight this July. You have to learn to live with it to some degree, as there’s no other choice. A certain amount of pain becomes normal. That’s not to say I don’t have bad days, or that I don’t ever cry, or that the level of pain regularly jumps above the threshold I can cope with. It does, but I usually don’t go out on those days if I can help it.
Seeking help for pain relief with medical professionals always carries some risk, that somehow you may receive the dreaded drug seeker label. It happens all the time, to completely innocent people who are just trying their best to manage their pain, and have no interest in abusing the medication. The problem is your GP sees you for around ten minutes at a time, and for me I often have telephone appointments as I don’t have the energy to get to the surgery – so she can’t even see me. My GP is very nice, but she’s perfunctory and to the point. We look at medications and their dosages and side effects. She’s never asked me, How does your pain impact you? What help do you need? What does a normal day feel like for you? It’s likely because those ten minutes are ticking past, she’s already an hour late and has a room full of patients waiting. I understand the reasons why, but it’s hard for her to then build a true picture of my life. It would be very easy for her to see me sitting next to her, dressed and holding it together and wonder if it’s as bad as I say without that vital background of how long it took to dress, what help I needed and how long I will need to sleep when I’ve got home from the appointment to recover.
If someone has asthma, diabetes or a high blood pressure – there are tests to back-up what they’re saying. An asthmatic can blow into a Peak Flow Metre to show their inhalers aren’t strong enough, but chronic pain patients only have their words, their actions and the hope that the doctor will understand. It’s so easy to say the wrong thing that stops the doctor from understanding, and make them doubt you. But would a doctor judge an asthmatic who needs a stronger inhaler? Would their character or appearance even come into it?
My pain has been pretty uncontrollable lately. In some ways I’ve wiped out months of my life by changing to the wrong medication. So many plans went out the window at a moment’s notice. Frustratingly, I was undoing months of progress of physiotherapy.
Pain relief can be one step forward, and a marathon back.
Then I got myself into quite the quandary. I found a medication that worked really, really well. But only for a little while, and then the bad days were horrendous. My doctor was happy to keep increasing to keep those good days, but I always knew the bad days were coming. And they were so far above my normal threshold of pain, I couldn’t even begin to explain. But it was so hard to give those good days up – the days where I could function for longer than normal and even be productive.
I then had to make the decision to leave those days behind. I had to. I could have kept increasing the strength, but when would it end? I’m in my 20s – I have years and years of pain relief ahead of me. If I max it out now, where the hell would I be in my 30s, 40s, 50s and beyond?
With every medication you take, you have to weigh up more than whether it helps, but also look at:
Are the side effects bearable? Are you taking six different medications just to counteract the side-effects?
Your tolerance levels. Are you constantly having to increase the dose because your body gets used to it?
Your levels of functioning. Some of the best forms of pain relief make you incredibly drowsy, or make you feel ‘out of it’. That might be fine to have a little break, but if you want to leave the house, you need to find somewhere in-between.
Can you access it? Not every medication is available in every country, some are through consultants or specialists only.
The relief you get. Taking all the above into account, is it worth it?
Living with chronic pain can feel like you have multiple spinning plates that you have to keep in the air. One falls, and the medication isn’t any good. Then, when you finally get a level of pain relief you can live with, someone throws a spanner in the works, such as this morning when my GP phoned me to say the new pain medication I have been put on has just been ‘red-listed’ meaning only secondary-care (consultants) can now prescribe it.
It’s frustrating and exhausting trying to keep all those plates up. It’s important to remember however, that this is not a sprint or a marathon, it’s a long-term balancing act.
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, just two months, and I saw them last week. Luckily they had much better ideas than the huge white plastic splint the orthotics departments had suggested – which immobilised my thumb completely.
What I needed was something that allowed my thumb to bend forward, but not backwards so I could still make jewellery. And I also needed something to provide gentle support when it was painful and inflamed. The Occupational Therapist gave me two things – a thumb splint, and some Cobon tape.
The splints are pretty subtle when they’re on, and don’t look so awful as some of them. They allow the forward movement I need, but stops the joint from hyper-extending backwards. When using my jewellery pliers it will still allow me to put the pressure on the wire I need.
So they’re my new gadgets! What do you think? Anything you think I need to buy?
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 another lady spoke up and suggested I was looking at it in the wrong way. That I was still putting that level of achievement on doing something. She said to turn it around and say:
‘My achievement today was doing nothing, because that is what my body needed.’
The days of being stuck in bed, or lying on a sofa are the hardest. Every cell in my body is rallying against it – telling me I need to be doing something. At my harshest I feel worthless if I’ve done nothing. But we have to listen to our bodies, and have to rest in order to function at other times. To continue to fight against it is to battle against ourselves and what we need physically. It just leads to more pain, and more fatigue – and more feelings of worthlessness as we putting the pressure on ourselves to perform. No one else.
It was quite the lightbulb moment for me, and made me realise she was right, it was a much healthier way of looking at it.
It’s often easier to step back from the situation and think what you’d tell someone else in the same position. If your friend told you she’d had a terrible day health-wise, and they felt like a useless piece of crap because they’d spent the day in bed, would you agree with her? Or would you empathise with their feelings, but point out they did the right thing by not fighting against how they felt, so they could rest up and hopefully have a better day soon. And that some days (or a lot of days!) spent sleeping, or reading, or on Facebook is absolutely fine, and doesn’t negate their worth in society?
Self-compassion is a crucial aspect of living with daily pain. I can think of so many people full of compassion for others who find it hard to turn it back on themselves. We need to become our own advocate – both to others, and to ourselves.
How do you use compassion or self-compassion in your life? All comments appreciated!
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 organ donation to take place, the person has to die in a hospital without damage to their organs, and they have to match up with someone waiting for a transplant. Finally, the family of the deceased has to give permission even if that person is on the donation register.
If you’re already on the register, it’s essential to tell your family of your decision to donate your organs. When you lose someone it’s a very shocking and traumatic time, and so a medical professional asking about organ donation may get an automatic no – but if the family are fully aware that you want to donate that may be at the forefront of their minds when asked that question. Families are generally more likely to agree if someone has actually registered their wishes (95% of families agree when they know the decision, compared to 45% who agree when they aren’t sure what the person wanted).
On the whole families in the UK are more likely to say no whether they’re on the register or not than any other country in Europe, so something seems to be going wrong here. It may help if it was openly discussed with families, and they hear what your wishes are directly from yourself – rather than a medical professional. Sending them a card from Give Your Heart will make the answer clear to them.
There is also a huge shortage of people who are Black or Asian on the register, yet these ethnic groups are actually more likely to need certain organ transplants due to a high susceptibility of having conditions such as high blood pressure or diabetes. If anyone is unsure if their religion allows them to donate, the NHS has more information here. There are very few religions that prohibit it. Registering to be a donor is really easy, you no longer have to fill in forms or cards and carry them with you, but simply pop your details onto the transplant register online. If you’ve moved house, or changed your surname recently, don’t forget to amend your details here.
One thousand people die each year waiting for a transplant. Let’s get #GiveYourHeart trending and make sure you give your heart this Valentine’s Day.
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 plan or their medication. Even if you have a great doctor you are constrained by budgets, research, and availability of treatments.
In the midst of all this other decisions get wrested from you too – your hair, your clothes and your accessories. Funky handbags are swapped for practical ones that stay put when you’re using a walking stick or crutches. A favourite necklace has to be removed because it tangles with wires. You pick new clothes based not on the designer, or because you love the colour, but by comfort so as to reduce chronic pain flare ups. Smart shirts get thrown out because buttons were designed by the devil, or t-shirts discarded because you can’t lift your arms up. I was never a fashionista, but I’ve lost count of the items I’ve thrown out that simply no longer fit into my world.
And if we do dare to put on make-up and nice clothes and do our hair we are often misjudged – “she can’t be that unwell”, we hear, sometimes silently, sometimes not. This feeling creeps into the NHS too. I know of many people who won’t wear make-up when discussing pain relief with a doctor because they think they won’t be taken as seriously.
The Department of Work and Pensions openly judges appearance during benefit assessments. They ask assessors to make notes on “the claimant’s appearance, manner, hearing ability, walking ability,” and they will frequently use this ‘informal observations’ section to make comments on clothing, make-up and hair. A comment on my own form actually stated: “Wearing brightly coloured clothes which shows no outward sign of depression”. I was wearing baggy yoga clothing because anything tight was painful, and the assessor made a totally inaccurate correlation between the colour of my t-shirt and my health.
Similarly, I often wear my hair in a ponytail because it reduces my neck pain. On my medical form that hairstyle seemed to equate to an ability to lift my arms, but I wasn’t asked if someone else had done it, which they had. Due to notes like these made by the assessor, my Disability Living Allowance claim was turned down twice. The two tribunal cases that followed were horrific. I was cross-examined and treated like a criminal.
These experiences have enormous ramifications for so many people trying their best to navigate the system. The wait for a tribunal can last between six months to a year, and causes immense stress.
When you have an invisible condition, you can face an additional level of scrutiny and are often having to work much harder to prove how ill you feel. So it’s not surprising that sometimes I feel like I’m losing myself. Already, my world centres on ill health – doctors’ appointments, hospital stays and physiotherapy. But I’m still a person under the hospital gown. I still like my nails to be brightly coloured even when my hands are covered in bruises from a cannula, or welts from a blood pressure machine.
#hospitalglam is about taking back that control and saying you can wear what you want to, and it doesn’t represent how you feel. While disabled people are already there, society and the medical establishment lag behind – often still expecting one specific look from a person deemed chronically ill.
Make-up and smart clothes shouldn’t clash with anyone’s idea of disability – so come on world, catch up.
Yesterday I went to London to see Dr Hakim, one of the top specialists in Britain for Ehlers-Danlos Syndrome.
I was nervous when I got there – I always am before I see a consultant, due to many, many bad experiences. However he immediately put me at ease, and was a nice, approachable person.
I’d made a list of problems I wanted to talk about, and he made a note of them and went through each in turn giving me ideas and suggestions of particular treatments or medications I could try.
He said in terms of exercise I was doing everything right, and everything I could. This meant a lot, as I’ve had medical professionals be so judgmental with no understanding of how hard it is to do the ‘little’ I do without putting myself in bed for weeks. I told him what one Pain Consultant had said – that I should be exercising six times a day. He said it was such an easy thing to say, and proved how little he knows.
We spoke about my Physiotherapist Leon Stephens at Sudbury Physiotherapy Centre who specialises in Hypermobility, and has been great, and Dr Hakim knew of him, which was good.
At some point this year I need to renew my Employment and Support Allowance, and in the next couple of years my indefinite Disability Living Allowance award will be changed over to the replacement – Personal Independence Payment (PIP). I’m terrified about both of these, as are most disabled people in the country who currently rely on them – or may need them in the future – to survive. I never know how people may react to something like that, due all the ‘scroungers’ rhetoric in the media, that has been picked up by so many.
Since I received my diagnosis letter in 2011 – I haven’t had a decent letter from a consultant that I could use as medical evidence. I’ve seen lots of consultants, but letters are generally of the “Treatment x didn’t work, been discharged” variety which won’t help much in terms of summarising where I’m currently at on the whole. I feared the lack of letters may go against me, as the Department of Work and Pensions will argue I can’t be that bad if I don’t see a consultant regularly.
Dr Hakim was very understanding of this, and we spoke at length about the PIP changeover, and he knew how hard it was on his patients. He said it’s obvious the reason I don’t have new evidence is because I’m doing the best I can at home to manage, but he would write an updated version for me to keep on file for when I need this.
This will take a huge worry away from me, so I’m thrilled.
He recommended that I take a multivitamin daily – he mentioned the Well Woman one, to make sure I’m topping up on anything that could be contributing to my levels of fatigue. He’s also going to ask my GP to check every blood test has been done, including the T3 Thyroid test that the NHS often miss out. He also suggested getting some Melatonin from the US, as well as suggesting some other sleep and pain medications I have yet to try that he’s going to suggest to my GP to look into (I can’t remember the name of them currently!) He also recommended some consultations in other fields that I could see if I continue to get nowhere locally.
He also suggested that anyone with POTs or autonomic dysfunction (including sleep problems) to drink an Isotonic drink called Nuun. He explained that they tell people like us to keep hydrated, so we drink water – but it actually make things worse as it dilutes the salt in our blood, so our kidneys then filter it and we pass it out with urine leaving things actually worse. (Or something like that!)
So he suggested drinking a salt isotonic drink which means that we are really hydrated, as drinking liquid with a similar salt content as our blood means it will do its job, rather than being filtered and disposed of straight away. Most of the similar products on the market i.e. sports drinks, Lucozade, etc are full of crap and sugar, so he suggests Nuun as it doesn’t add much else, just some flavouring. He suggested at a minimum to drink one before bed, and one as soon as you wake up, and this should stabilise some of those issues.
They are pretty expensive, but we only need half a tablet at a time, as the whole tablets are designed for athletes.
We also spoke about Prolotherapy, which is a new therapy I’m hearing a lot about recently, mostly from Americans, and I was interested in his thoughts. He said there was no evidence for it, and some of his patients had been made worse by it.
I found Dr Hakim very understanding, kind and obviously knowledgeable. All in all it was a great appointment – and when his letter arrives I will add anything helpful I’ve forgotten!
Professor Grahame retired from NHS patients some time ago, and is no longer taking on new private patients. I believe he may still have a private clinic for under 16s, but Dr Hakim is a perfect alternative.
I love it, but not everyone does for lots of different reasons. When you have a chronic illness or disability there can be some roadblocks to your ability to get through the season, like the cold weather ahead, services shutting down, carers taking time off and so on.
So I thought I’d put together a little survival guide with some of my tips and ideas of how to get through the festive season, and I would love you to share some of yours in the comments below.
1) Christmas Cards
When you have chronic pain, the thought of sitting and writing out a stack of cards can be a daunting prospect. Some may struggle to see what they’re writing, others may suffer from hand tremors that send their writing all over the place. If you’re anxious about cards, why not look at other options?
A traditional Christmas Card
E-cards can be a lot easier to create, and are sent by email. If you’d rather give someone a physical card, you could type out an insert to pop in with each card. (I find typing a lot easier than writing for a short period of time, and when I can’t I use Dragon Naturally Speaking to control the computer with my voice.)
Also have a look into the full range of pens out there. Some may find a thicker pen easier to hold, or an ergonomic design that slides onto your fingers to stop it shaking and give a better grip may help others. Then write a couple of cards a day, rather than sitting and doing them all at once which will help pace the activity out.
2) Gift Wrap
If you’re an online shopper, there is often a gift wrap option to save you doing it. Otherwise, it’s time to get creative. I sometimes buy a range of pretty gift bags and shredded tissue paper. I pop the gift in the bag, cover it with tissue paper and tape the top. It’s much quicker, and you don’t have to worry about neat corners and ribbons. There is also such a large range of gift bags and boxes now – including specific ones like for wine, DVDs, etc that make life a bit easier.
3) Christmas Parties
When you have limited energy, these can be a bit of a nightmare. It doesn’t mean you should miss out entirely, but perhaps just limit yourself to an hour or so, or make sure you’ve build resting time in before and after to give yourself as much energy as possible.
You could also host an alternative party by getting a selection of Christmas films in, some festive snacks and keep it low-key.
4) Watch out for the Winter Blues
Even those who aren’t formally diagnosed with depression can find the winter months difficult to get through. Many feel trapped in their houses, avoiding cold weather and icy pavements. Days go by quickly when there isn’t much light, and it can be quite isolating.
Try to make sure you continue doing things you enjoy. While the outdoors might be shut off to you, perhaps join a local crafting group, or take it in turns to have a small gathering with friends so you don’t go for long-stretches without seeing anyone. The charity Mind are suggesting you hold a Christmas Crafternoon. Find out more by following this link.
If you do find yourself struggling with the blues, remember the Samaritans are always available, and you can even email them if you find phones awkward. Sometimes just a friendly voice or email can help break up your feelings of isolation.
A different type of winter blue
Last year we were lucky enough in the south east to avoid the snow. This won’t always be the case though, so try and plan ahead.
I bought some thermal gloves earlier this year – as my hands tend to feel the worst of the cold, as well as some thermal socks. I checked my boots are okay, and don’t have holes in them in October, so I had time to replace them if needed. I’ve bought a blanket and a wheelchair bag so I can carry it around with me if needed, and keep one in the car.
Those with joint problems/mobility issues tend to feel the cold much quicker, and those in wheelchairs usually suffer badly – as when you’re sitting still you’re not generating natural body heat.
Look into heat packs – wheat packs are good for around the house, or Cura-Heat pain packs or similar places on the worst areas. There are also hand warmers or foot warmers to put in your shoe/gloves. There are also the clickable versions that tend to give pretty good warmth, but do need boiling before you can use them again.
Generally however, I plan not to go out as much as possible in the cold. Many pharmacies offer a repeat prescription and home delivery service, so I get my medications bought to me monthly. This saves one worry, and one trip out.
I also make use of online delivery for food shopping. Tesco were offering a Delivery Saver where you pay £30 a year and don’t pay for any mid-week delivery slots, and you also get priority over the Christmas period. Other supermarkets will probably offer similar money-saving options. Iceland now offer online delivery, whereas you used to have to go to the store and carry out the shop for them to take your shopping for you. This is a great way to get in festive food without having to face the crowds.
If you’re a fan of online shopping, always make sure to have a look for any money-saving codes, and sign-up to cashback sites such as Quidco. If you’re prefer a non-virtual experience in real shops, try and go mid-week when it’s not as busy. Try to start picking up bits throughout the year rather than panic in the last couple of weeks. This year I’ve failed however, and will be joining those panicking!
6) Ask for Help
Sometimes you really need to be honest with your loved ones about what you’ll need to get through the day. I normally go to family member’s for Christmas Day, so for me it’s more about trying to pace and saying no if needed. Usually after lunch my family goes to the crematory to pay their respects. However, I spend that time sleeping in order to get through the evening. I found it quite hard to ask for this, particularly to sleep at a family member’s house – but I had to suck it up and say that’s what I needed.
If I get invited to a party or gathering, I always try to tell them I’ll need a chair, and most will put one aside especially for me. Also try to tell people in advance what you’ll need – a quiet place to rest, or that you might need to leave early. When responding perhaps say you’ll only be able to come for an hour or so, so you don’t feel bad if you do have to leave, and if you’re able to stay longer it’s a bonus.
A friend of mine who is the host for her family at Christmas saves up to get in a cleaning company, so that’s one task off her shoulders. I also recently hosted a small gathering at my house. I knew I wouldn’t be able to be up-and-down all night offering drinks, so instead I made a Festive Punch, put out some other soft drinks, and put up a sign asking people to help themselves. They did, and it really saved me some energy and pain!
I of course know it’s not always easy, that families aren’t always supportive of your needs, and can be dismissive. There are no easy answers. Just try to be firm, and perhaps find someone to be an ally and help to advocate for you. But some people will always be that way unfortunately!
7) Stock up on pain relief
Extra activity often leads to extra pain. So make sure you have enough painkillers to last the season, if needed. Take a higher dose on Christmas Day, which may be the worst day.
Biofreeze and a wheat bag
Also have a box ready with anything else you use. A microwavable heat bag, Tigerbalm, a Pain Gone Pen, Biofreeze Spray, etc. Perhaps also book in a massage/physiotherapy appointment/chiropractic adjustment in advance for the week after Christmas if that’s what helps you, and saves having to phone around once the pain has hit, and companies are closed for the season.
8) Cooking Made Easy
If you’re the one that has to provide the Christmas meal – there are lots of short-cuts that make it easier on you.
Frozen and already prepared food is much better quality than it used to be. You can get almost everything already chopped and peeled, which will save time, as well as energy. It’s not ‘cheating’ to make use of these, and while it may work it more expensive – to me it’s definitely worth it if you can budget for it.
Make a list of times to put each item in the oven a few days before Christmas, before everything gets busy. Tape a list near the oven, and direct anyone in the kitchen at the time to make themselves useful. Set alarms on your phone so it all runs smoothly and stress doesn’t take over.
On Christmas Eve prepare everything you can – put vegetables in pans, cover in water and put the lids on.
If it’s easier on you, have a light lunch and move the main meal later on to give yourself more time.
9) Think Ahead
Bugs and colds are plentiful at this time of year, so take a trip to the pharmacy and grab a basket of essentials. Paracetamol, cough syrup/throat pastels, Lemsip, Beechams, Immodium, Milk of Magnesia, etc. The last thing you want to do if you’re stuck down is have to drag yourself out. Also have a bottle of hand santisier available to try and prevent some common bugs beforehand.
Have a list of numbers ready in case of an emergency. The local police station, the out of hours GP, emergency vet, who you’d call if your boiler breaks down, etc.
Don’t forget to pick up some batteries and light bulbs, and make sure you have a working torch to hand.
Okay, so Christmas isn’t a national emergency, but it’s always easier to be prepared. You never know when a flare up might hit, and you’ll be grateful you grabbed that extra light bulb before it happened.
A selection of medications for common winter bugs
10) Remember Others
Families that have at least one member with a disability are 30 times more likely to be living in poverty than a family without a disabled member. In the past year the number of people having to use Food Banks has trebled.
60,000 people relied on their local Food Bank to provide their Christmas meal last year, and this will have significantly increased this year.
If you can afford it, please pick up a few bits for the Food Bank – and think outside the box. The most common donations are baked beans and soup, and while they’re gratefully received – there are many more products vitally needed.
A lot of the people going to the food banks don’t have the facilities to cook from scratch, so rather than a tin of tomatoes – a complete sauce is often much easier. Anything that can be a complete meal in a can – like a stew is also helpful. Treats are very welcome – if you’re living on beans, a small packet of sweets, or some biscuits can be very welcomed and bring some normality back.
A list of needed products from my local food bank are as follows: Tinned Meat, Tinned Vegetables, Rice Pudding, Squash, Tinned Potatoes, Long Life Fruit Juice, Long Life Milk, Nappies, Baby Food, Toiletries including sanitary protection, Shaving Foam, Toothbrushes/Toothpaste, Shampoo/Condition, Christmas Treats, Instant Mash, Pasta Sauce, bags of Sugar, Instant Coffee and small bags of tea bags (for single people).
Also – many people have pets before they fall on hard times, so donations of cat/dog food are most gratefully received.
Everyone has their own coping methods, so I’d love it if you shared them in the comments as they may just give someone else an idea. Finally, my wish to you is that you have a happy and pain-free Christmas, and a better 2015 than you had this year.