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 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.
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, 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!
Christmas. The most wonderful time of the year?
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.
What is Ehlers-Danlos Syndrome?
Ehlers-Danlos Syndrome is a connective tissue disease, caused by faulty collagen. Collagen is the ‘glue’ of your body and is part of your skin, organs, ligaments, tendons and much more. The condition is multi-systemic, which means it impacts almost all of the body in some way, including the heart, lungs, auto-immune system, gastrointestinal tract, eyes and in lots of different ways that are too numerous to mention. There are different types of the condition, which range from highly disabling, to some types which are even fatal.
The most common type of Ehlers-Danlos Syndrome is Hypermobility type. This is because the most prominent sign is the Hypermobile joints – colloquially known as being ‘double-jointed’. This can occur in any joint, and means the ligaments and tendons aren’t holding the joints in place as they should, and allows the joints to over-extend. This causes damage in the connective tissues surrounding the joints. Joints can also dislocate, or semi-dislocate (subluxate) which is very painful.
As the connective tissue isn’t doing its job, the muscles take over. This means they’re usually tight and in spasm, and overwork which causes additional fatigue.
The condition is genetic and two-thirds of sufferers inherit it from one of their parents. One third get it through a genetic mutation.
How does it impact me on a day-to-day basis?
While I was born with it, the symptoms throughout childhood seemed random, so no one ever realised there was an underlying condition. I had lots of bouts of pain throughout my childhood that doctors dismissed as growing pains, and often my legs or ankles would give way and I’d fall to floor for no reason. My healing was poor and left scars easily. Simple tasks like tying my shoelaces were difficult, I struggled to write for long periods, and my handwriting was awful.
At the age of 15 my pain became constant. I now know this is a very common time to trigger the condition more seriously, but it took almost nine years before a consultant finally stopped shrugging their shoulders at me, and put a name to my condition. For all those years – the years most people are growing up, and having a life – I was getting home from college, or university and collapsing in bed, and spending all my money on alternative therapies to try and get some relief as the doctors couldn’t offer any help.
I have never had a pain-free day for almost twelve years. It’s unrelenting, and even worse is unpredictable. One day I could be limping from my left leg and unable to move my arm, and the next day they’ll be fine but my hip feels like it’s on fire and my neck is locked in place. This is makes it difficult to know what I’ll be able to do that day – and how much help I’ll need.
The condition impacts the auto-immune system and produces too much adrenaline, so I sleep really badly, and have insomnia. The fatigue is crippling, and I often have to spend all day in bed, or unable to function. Often just being able to do a simple task like have a shower, or get dressed is an achievement and all I’ll be able to do that day.
To be able to do something else – like go to a friend’s house, have a meal out or even worse – attend an all-day event is a bit of a nightmare, and involve lots of planning. For days in advance I’d need to rest to conserve my energy, then on the day take every painkiller available, and use every bit of my strength to get through it. Recovery will usually take weeks.
My hypermobile joints are particularly bad in my spine, and so I’ve developed bulging discs, arthritis, degenerative lumbar disease, scoliosis and cysts on my spine due to the over-extension there. As a result my mobility is impacted, and I can only walk with extreme pain, and so use an electric wheelchair.
Why is awareness so important?
The diagnosis rates of the condition are really poor. The average time of diagnosis for sufferers is over ten years, but for many it’s much longer, and some even live their whole lives without knowing what’s wrong with them. Many are also misdiagnosed with other conditions, or told it’s all in their heads. Ehlers-Danlos Syndrome is estimated to affect one in 5000 people in the UK, however according to a recent study, around 95% of cases go undiagnosed or misdiagnosed every year, meaning this figure is in reality much higher.
EDS is treated terribly by the medical community. I wrote a little more about this topic in Rare Disease Day and Ehlers-Danlos Syndrome. In general most doctors spend a few minutes covering the condition in their studies, and so don’t recognise it when they come across patients who are looking for answers. It’s also highly neglected in terms of research, care, NHS services and provision of medical expertise. There are only a couple of specialists in the whole of the UK for the condition, which are usually oversubscribed due to the demand.
There are some quite simple ways of looking out for the condition, so we need to get the word out to front-line medical staff – GPs, nurses, physiotherapists – as well as members of the community, so they can spot the signs as early as possible, and get help for people before they have to live years in pain without understanding why.
If you recognise any of the symptoms mentioned above in yourself, your child or someone you know – particularly hypermobile joints, long-term chronic pain and other unexplained symptoms – please seek further medical advice, and request to see a specialist as soon as possible.
The Awareness Ribbon for EDS features a Zebra Print. This is from the phrase taught in medical schools – “When you hear hoofbeats, think horses, not zebras.” This means when presented with a set of symptoms – the most obvious answer is usually a common condition.
EDS adopted the zebra to say – hey, rare conditions exist too!