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.
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.
When you’re in constant pain, it’s very easy to focus on it. It can become all-consuming, and the more you think about it – the worse it feels. Someone once suggested to me that I try crafting as a means of distraction. I have to be honest, I was a little annoyed – how would painting a pretty picture take my crippling pain away? It seemed a little dismissive. Plus there was also the fact I’d never thought of myself as a particularly creative or artistic person. At school even my doodled stick figures ran screaming in terror, and my art teacher made it clear it wasn’t my forte, but I thought I’d give card-making a try.
I enjoyed making them, but they weren’t that great. I’d look online at all the beautiful designs people were creating, and it just didn’t feel quite like me. After I’d spent a fortune on card-making supplies, I decided to try my hand at jewellery instead, and in doing so found a new passion.
The early days of making jewellery weren’t easy – my hands cramped up terribly, and I was left with blisters all over my skin. In time my dexterity improved and it helped strengthen some of my muscles in my hands. And it was true – when I’m busy concentrating on making a new item, my brain is focused elsewhere. It doesn’t make the pain go away, it just redirects my attention so I’m not thinking about it, which is really helpful.
Once I joined the world of crafting – I found more and more other people with disabilities were also there, and finding an outlet in art – by painting, woodwork, ceramics, photography or anything in-between. For example a friend of mine makes ‘pain monsters’ from felt when she’s having a bad day, which helps her create a visual representation of what she’s feeling.
It took me quite a long time to find out what was wrong with me. Many years of fighting and pleading with the medical community to stop shrugging their shoulders, and to do something. When I was told I had Fibromyalgia, it came as something of a relief. I felt like I wasn’t alone – there were other people with this stupidly long list of symptoms out there. I wanted to commemorate the end of that fight, that also informed people about the condition. I made my first Fibromyalgia awareness bracelet not long after, and then began to receive requests to create ones for other conditions – including some I’d never heard of before. People liked the more personalised feel to the more generic rubber bands that are usually sold. My biggest seller was for Marie Charcot Tooth Disease, and eventually the national charity began to order from me so they could sell them on their website.
I also auctioned lots of my bracelets off for the Fibromyalgia Association UK, and also for Ehlers-Danlos Syndrome related charities when I was diagnosed, a genetic multi-systemic connective tissue disorder. It made me feel like I was helping, even in one tiny way.
An Ehlers-Danlos Syndrome bracelet featuring zebra stripe beads – the symbol of the condition
It’s very common to walk into a shop and see a row of pink coloured items for Breast Cancer awareness. Yet there are so many other conditions that people often haven’t even heard of before, let alone understand what they entail and what it’s like to live with them. People have often told me when wearing one of my awareness bracelets it has sparked conversations with friends and family who had never asked about their health before.
Fibromyalgia Awareness Bracelet
Fibromyalgia Awareness Bracelet 2
The colours of the bracelets are usually picked by the existing awareness ribbon colour, and if there isn’t one, then by the colours of the national organisation/charity for the condition. Sometimes there are obvious symbols that can be included as charms. Fibromyalgia often has an association with butterflies, Autism with jigsaw pieces, Charcot Marie Tooth Disease with hands and feet. Sometimes a spoon charm is added from the fantastic analogy “The Spoon Theory” by Christine Miserandino, to which many people with chronic illness resonated with. My most commonly used charm is simply a silver ribbon with the word hope written on it – as I believe that’s something we all need in some form or another.
Arthritis Awareness Bracelet
In April this year I had to stop working due to my health continuing to get worse. Being able to make jewellery – even if it’s for twenty minutes in the middle of the night when I’m struggling to sleep, has helped keep my spirits up and creativity flowing.
If you’re interested in seeing more of my jewellery and awareness items you can find me under Sparkly Place Jewellery on Facebook.
Frustration. Credit to Staci Becker
I don’t tend to cry. I mean – give me a sad film, or book and I’m sobbing like nobody’s business. But in pain, randomly when it’s all just got too much? Not that often. (Although let’s take my last year of work out of the equation, because dear god I was a mess.)
But I have cried in my last three appointments, and all three times it was around the same topics. Frustration at the “system” and exercise.
The last few months have been tough for me. My condition seems to have gone into haywire, insomnia has struck big time, my pain levels are pretty damn ridonkulous and I’ve been pretty much stuck in the house. It’s always tough when you have a flare up, because of the fear this is your new reality. This is the next downward slide, on a slide that’s been pretty slippery for the last eleven years. At the same time there has to be hope. Sometimes I pin it on myself – I’m going to try this supplement, and do these new stretches eight times a day until every muscle in my body is strengthened and then…
And then I’m doing the most basic of basic stretches, and put my joint out, and I’m lying on the floor with half my body shaking in spasm, trying not to throw up and thinking if I can just make it back to the sofa and not move for five days, it will be okay.
So then I pin that hope on others. That I’m going to go to the physio and they’ll give me as much Hydrotherapy as I need, and then I’ll see the pain consultant and they’ll read the research I’ve found around a specific new medication that looks really promising and will give it to me without a fight, and then…
And then I’m sitting with the physiotherapy who is giving me the lecture that they don’t have infinite resources, so I can have one more block of hydrotherapy next year, and then that’s it. I’ll have to find somewhere else to go, and I’m trying to explain there is nowhere else, nowhere accessible, nowhere affordable, and I’m crying because I just want them to say yes, no problem, for once.
And then I’m at the pain consultant – the one that’s meant to work with people with Ehlers-Danlos Syndrome a lot, except she’s getting the most basic elements of the condition wrong. She does read the research I push at her, and she turns and says – “Yes, we do this here.” There’s a pause, my heart races. “But not for people with your condition.” And then she’s lecturing me – you need to exercise, and push through the pain, it can’t be that bad. And I’m trying to tell her, explain that I’m not talking about aching muscles the next day after a session at the gym, but agonising and consuming pain, partial dislocations – bedbound for days, and I’m crying because she doesn’t get it.
And then I’m at the osteopath, and she has her elbow in my lumbar spine, and she says, “Have you considered exercise?” And I sigh internally, but politely try to explain the same old issues, that I do exercise – but it has to be extremely limited, and she’s pushing it and pushing it until the tears are there again and then she’s backpedalling, and sorry.
It’s so frustrating, I hate crying – and on their own are such minor things. It’s the build up of it all, the feeling they’re just not listening.
But I need to wipe my tears, because it gets me nowhere, and push on with what I can. I’ll get there.
I’m not a morning person.
So I find it slightly…irritating, I have to get up early in order to go to the relaxation sessions I’ve been having over the last few weeks. I don’t find that relaxing at all!
Relaxation sessions is one of the treatments the local pain clinic offers. To be fair – the clinic doesn’t offer that much, but the relaxation sessions are one of the handful of treatments they do. They’re run by a friendly nurse, in a room that hasn’t changed in the ten years I’ve been going to the pain clinic, the chairs are uncomfortable, and it’s kind of cold. But they do offer pillows, of which I usually take about five just to get to basic levels of the chair not completely sucking.
Relaxation is a funny one. I don’t tend to do it at home, because if I do I just fall asleep. The one time I remember it being successfully done at home was on a lovely summer day, and I dragged my yoga mat outside and lay listening to the peace and quiet, the sun warming me up and my laptop playing the free CD the pain clinic gives at the end of the sessions.
I do hope to do it again this summer, but generally I’m always too busy doing… something, and don’t make time for relaxation like I should.
When you have chronic pain, it’s generally thought the natural fight or flight response to the body has gone a bit haywire, and it’s constantly in fight mode. You’re naturally stressed, your nerves are constantly firing in pain and your muscles tense up. Relaxation is aimed at trying to break this connection between the brain and the body, to try and release those muscles and to de-stress.
I generally don’t find any benefits of relaxation last long-term, but I do find it a good distraction when I take the time to do it – and find I do achieve a deep relaxation where I have no idea what’s happening, which is always a plus!
Sometimes when in pain it’s also an idea to concentrate on your breathing – by putting your hand on your abdomen and slowly breathe in and out, trying to push your breath down as far as possible – instead of breathing in the chest like most people do as a bad habit. Again, I find this does reduce pain a little sometimes, and calms me – and again works well as a distraction technique.
My last session with the pain clinic is tomorrow, but if it’s something that interests you I’ve found my local Health In Mind (http://www.rethink.org) offer similar free sessions, or it’s something easily done yourself by downloading a relaxation track, or for free on YouTube.
Where you’re favourite place to relax? How often do you fit it in?
A strong emphasis that seems to surround pain management and long-term conditions is acceptance.
It took me years to get to a certain level of understanding about what was happening to me. In the early years I spent literally thousands of pounds visiting all kinds of complementary therapists, buying supplements and trying the new fads. I was searching for a cure.
This probably lasted until I was diagnosed with a condition that’s incurable and so I had to adjust my thinking from ‘a cure’ to ‘management’ and also empowerment. I had to learn that my pain wasn’t going to vanish as soon as I found the some right type of massage, or the right acupuncturist. I had to try and take control of my own condition by trying to make the world fit my condition as best as possible. I had to say no to things I knew would impact on me, I had to find the right type of work, get the right kind of car, get a stick to help me walk, etc. I still continued the couple of treatments that gave me form of benefit, and stopped the others.
However, I still continued to hold on to some kind of hope. This was in the form of a particular issue with my lower back – which out of all the pain I deal with, and all the symptoms – the pain is my back is probably what impacts my life the most. It stops me sitting comfortable, and walking properly, and the pain is constant and severe. I begged for years for an MRI, or just for someone to find out why my back was so bad. It was different to the other general muscular pain, or joint flare ups, and finally I was given an MRI this year. This led to a referral to a spine surgeon who I saw last week.
The surgeon explained to be the damage in my spine is in the wrong place, and any surgery would just cause more damage.
I knew in my heart of hearts that would be the case from the research I’d done, and I smiled and nodded at him.
Yet, it hurts. I think I was holding on to a lot of hope that I would still get some kind of magical cure for my back. I realised when I was driving to work yesterday and my eyes suddenly filled with tears, because in many ways this is it. I really do have to come to grips with the acceptance milarky – with no ‘yes I understand this is it, but hopefully they’ll be able to help my back.’ There will be no cure. No treatment that will make it go away. No surgery.
It is simply about management now because that’s all I have, and trying to fight to right regime of medication, life-style choices and on-going pain management.
But it’s the fight, and the hope that keeps me going. I guess I just need to find the right balance.
If you ask a doctor how to care for a chronic condition, or read their guidelines, or even go in hospital for a month on an intensive-pain management course (just to be specific) the themes running through them all, their little buzzword, is self-care.
I was reading the papers that have been created in the wake of the imminent closure of the PCTs by the doctors commissioning consortia whose priorities for the future are self-care, with aims to give patients the confidence to manage their conditions themselves.
To be fair, this may help with some conditions where perhaps a specific therapy or medication keeps symptoms at bay, but it gets a little more complicated when it comes to complex conditions where pain and fatigue are two pervading symptoms, amongst many others, because there is no single treatment. There isn’t even ten treatments they can say hand on heart would help everyone with chronic pain.
To be frank, it infuriates me to hear phrases such as ‘take control of your own treatment’ or ‘You have the power in your hands’ etc, etc, blah, blah, blah.
What they don’t tell you is that you have to. Self-care, that is. Because it will make up 99.9% of your overall treatment plan. Oh, it may be occasionally the NHS will think of something – physiotherapy injections, uhh… more physiotherapy, that is if you kick up enough fuss. Otherwise, it’s DIY all the way.
At the age of 15 I visited a Rheumatologist. He said I’d ‘grow out of it’. In the following years I was sent a couple of times for Physiotherapy, but it didn’t make the slightest bit of difference. The NHS then gave up, and in desperation I saw chiropractors, osteopaths, acupuncturists and electro-acupuncturists. I tried the many sheets of exercises and stretches, swimming and pilates and a GP referral to the gym (that I paid for) which put me in bed for two weeks. I then started the ‘alternative’ stuff like the Alexander Technique to improve posture, the Bowen Technique which seemed weird and pointless. I saw Kinesiologists and had relaxation sessions. The only tiny bit of relief came from the many thousands of massage treatments I once again paid for.
I’ve researched madly, kept up to date with papers on pain, studies on medication, and constantly visit the doctor with a new research paper in hand.
I even diagnosed myself – after years of consultants shrugging their shoulders at me, I kept searching and searching until I finally realised what was wrong with me, and then fought to see consultants in London who finally knew what they were talking about.
I now can only exist and function from a mixture of massage and adjustments, which takes the edge off – maybe 5-10% at best. But it’s an important percentage.
In the ten years I’ve been madly trying anything and everything, the NHS gave me one set of facet joint injections in 2008. Some muscle injections in 2011. And six sessions of Hydrotherapy – but I had to fight for them all.
The thing I find infuriating is that no one tells you exactly what IS available. I had severe back problems for ten years before someone said to me there was a spine clinic in my town for people with long-term back issues. Do you really have to hit the ten year mark before they go crap, that is long term for a twenty-four year old?
When you get a diagnosis no one gives you a handbook and says here is what the Pain Clinic offer (if they deem you lucky enough to offer you anything at all) or let you know you can see Osteopaths and Chiropractors on the NHS. Or any other of the treatments they may have available. You have to wait until you stumble upon it yourself.
All they do is hand out painkillers (again, if you are lucky) and tell you self-care is the way it should be.
Sometimes I want to say you know what? I’ve self-cared. NHS – it’s your goddamn turn. I’m just too tired.
I would say sleep is pretty important to most people, but when it comes to chronically ill people – good sleep is like gold dust. A rare and a magnificent thing (if gold dust is particularly magnificent?). Sleep becomes difficult with a lot of conditions, whether they can’t sleep, don’t sleep well, find it difficult to sleep due to pain, or sleep way too long.
My sleep pattern is all over the place. It’s often a few hours interrupted by pain, often not getting to sleep until 4:00-5:00am. Then I’m falling asleep throughout the day as I didn’t get a good enough sleep. Then every week or so I’ll sleep far too long – sometimes 16+ hours but still don’t reach that final deep stage of sleep – so I wake feeling unrefreshed.
I often have bouts of insomnia where I’m awake all night, and a mess during the day. Insomnia is something I wouldn’t wish on my worst enemy. Whether it’s one night of sleeplessness, or much longer, it’s just horrible and when it happens to me, the fine line between being a bit of a wreck, and being in the gutter shatters, and I’m a cranky, exhausted, mess.
This happened inconveniently for the days running up a wedding at the weekend, and I spent the whole of the ceremony – pretty sure captured on camera as well, desperately trying to keep my eyes open and mostly failing.
It usually causes splitting headaches, moodiness, and the inability to enjoy anything. Your bed becomes all you can think about, and the further away that elusive ‘collapse into bed’ moment is, the worse you feel.
During my teenage years, and culminating in total insomnia during my first year of university, I’ve tried to practise better ‘sleep hygiene’. I have rules, although I often break them! I put these rules together myself from bitter experience, but the Pain Clinic also teaches them.
1) First and most importantly, no sleeping during the day. If you really, really have to sleep because oh no, your eyes are closing and can’t stay awake any more – make sure it stays under an hour. Set an alarm. I tend to find sleeping during the day equals hours awake at night, even if the nap was only brief. This is an almost impossible one I break often, sadly. If you really do have to sleep – don’t use your bedroom due to rule 2.
2) Don’t relax in the bedroom or even read. It should be for sleeping only (and you know, that one other thing!), so your brain connects your bedroom to sleep. This does work; if I walk into my bedroom I usually feel a wave of tiredness. I want to try and get the best sleep I can in that room, so if I have to nap during the day I pick another room.
3) If you’re lying there wide awake – get up and do something. Having said this, if I’m in the tired but can’t fall asleep stage I will often stay in bed anyway. I use this time to drift off and daydream (or night dream?) as I feel this also benefits you. But if I’m wide awake I’ll leave the room and read. (Although I’ll often go on the computer which wakes me up more, so try not to do that!)
4) Turn the clock away from you. There is nothing worse than being unable to sleep, and watching the hours tick away. If you don’t know what time it is, I feel you don’t get into that oh god I must sleep panic so easily.
5) And final tip if you’re hardcore is to try and get a sleep routine. This one I believe would work, but I find it too hard to stick to. I find if I get up early when I don’t have something to do – I fall asleep against my will.
Credit to nioanto
Further rules on sleep hygiene can be found in this article here by Amber Merton.
Health.com has written a list of twelve things you can do for someone in pain. It’s aimed at those with rheumatoid arthritis, but it would apply just as much to those with Fibromyalgia, as apparently those with Fibromyalgia tend to have a much higher level of pain, that’s constant in nature.
Some of the ones I like best include:
3) Slow Down. The lady describes going for walks with strangers, and they’d go at her pace, and allow her to lean on them at times.
I am very limited in walking now anyway, but back when I could walk, slowly and in pain, I was always grateful to those who slowed down for me, and allowed me to stop and rest without judgement. It’s so lovely complete strangers would do this, when I found it wouldn’t even occur to people very close to me.
4) Make a Bed. I’m lucky enough that I no longer have to do this as I have support in place, but at university when I had to change my sheets, it was something I dreaded. It left me in agony and I’d then collapse, exhausted for hours. I have since found this genius produce All Zipped Up – which simply has a zip all the way round to make changing it to so much easier. They would make excellent present. http://www.allzippedup.co.uk/
7) Learn and Believe. This would be my number one. I am so, so grateful to the people that take the time to google my conditions, and read about them. I’m very grateful to those that can even just give an approximation of what I actually have, as it’s more than 99% of my people around me can do. I really appreciate it, and it means a lot to me. It shows they care.
8) Make a Meal. Wow, yes. Again this is something so incredibly appreciated. Cooking can be one of the hardest things to do – a mixture of standing, repetitive moments and carrying heavy items. Chopping, peeling and slicing can be a nightmare. I would have appreciated this so much at university, when by my final year I lived off microwave meals as I didn’t have the energy to make anything else. If you know someone in pain that lives near to you and are cooking something up anyway, save them a bit!
Credit to alex27
My pain started when I was 10, and has been constant since I was 15. I saw doctor after doctor and got nowhere.
Some said I’d grow out of it, others seemed to content to tell me it wasn’t arthritis, and send me on my way.
I just wanted to know what it was. I needed to put a name and I pleaded with them for one, but was told they didn’t want to ‘label’ me. I was in non-stop, agonising, soul-destroying pain. I couldn’t go out with friends, I was exhausted and felt completely alone. I thought knowing the name of my condition would make me feel like there were others out there just like me. I didn’t see how it was a label – it was the name of my bloody condition, and I wanted to know what it was.
In 2005 I was told by a rheumatologist I’d grow out of it. In 2008 I got really pissed off, and saw three consultants. In March it was due to subluxation, in July Chronic Myofacial Pain and by August it was simply ‘mechanically related’. What the hell did they mean? They were wishy-washy nothingness!
I was at university one day, and was probably putting off writing an essay, when I put every single one of my symptoms into google and hit search. A condition called Fibromyalgia popped up.
I read down the list and read everything I could about it. It fit me! Everything it said I could relate to. The relief was – I can only describe it as immense. I didn’t even register the bit at the bottom that said it was incurable.
I hit print and phoned my doctors, and made an appointment for that day. It was a doctor I’d never seen before, as I’d fired my previous GP for using the unforgivable phrase.*
I remember the GP finally asking for my symptoms that day. Do you know how rare that it? Most get to pain and stop there, as if the hundreds of other crap that goes alone with it means nothing. He nodded and said yes, it does sound like Fibromyalgia – but you need a clinical diagnosis and so sent me to a Pain Clinic, who still did not give me a diagnosis – but gave me nine facet injections in the facet joints of my neck, and muscles of my shoulder.
It took until January this year – eight years – until I finally ‘hit the jackpot’ by getting some decent doctors and some actual diagnoses. I saw two specialists on the same day, one who diagnosed me with Fibromyalgia, and the other with Ehlers-Danlos Syndrome (and lots of related conditions).
So, I’ve completed the battle in getting the names, and it did help. When people ask what’s wrong, I can tell them rather than shrug my shoulders. I can meet people in the same boat and keep on top of research.
But where do I go from here? My pain hasn’t improved, and in fact gets worse all the time. My lower back seems have gone on the warpath to unbearable levels, and my McTimoney Chiropractor, who usually has magical powers in finding the culprit and sorting it out, even temporarily, hasn’t been able to touch the problem.
Credit to Dennis Taufenbach
Do I keep battling on? Do I keep asking to see new professors who I hear have helped others? Before I got my diagnosis I was going to ask to see an Orthopaedic doctor to try and see if they could do anything with my lower back, but now I have been told I have Ehlers-Danlos Syndrome and Fibromyalgia, are they just going to shrug and say well you have those, what do you expect? Or might they be able to do proper scans and sort out some of the pain? I just don’t know. I feel a bit lost, and am not sure where to turn.
I am on the waiting list for intensive in-patient treatment at the Royal Orthopaedic hospital in Stanmore, for pain management, but it’s still not looking into causes and fixing it.
I guess what kept me going was finding out what’s wrong with me, and now I do, I wonder if this is it?
* The unforgiveable phrase is ‘there isn’t a magic wand that can cure you.’ Did I ask for a magic wand?! No! Just a doctor that does their best to help. That’s all.
Credit to Puiu Adriana Mirabela
Today I went to a Chronic Pain support group. I love going, it’s quite a great feeling being in a room full of people who know exactly what you’re going through. Sadly it usually clashes with a work day, so I’m not able to go. We spend the time just talking about our current issues – sharing things that have worked for us, having a bit of a vent and quite often having a laugh at ourselves.
Speaking of work, things came to a head when I went to see my GP recently and explained how low and stressed I was feeling. She then said she wanted me to have a break from work, and signed me off for a month. She also referred me back to the chronic pain clinic at the local hospital to see if they can try something new, and decided to put me on Prozac, to see if I can kick this depression.
Work took it in their usual way. I have an occupational health assessment tomorrow, which they asked me to have when I joined the company. I’m quite nervous about it, but will see how it goes.
I’ve been trying to think of something new to do a fundraising event for Fair Access to Colchester. The group has no money, and I desperately want to advertise and do lots of other things that cost money. I’ve run some pamper days for a village hall charity before, and I wanted to do something different.
At the same time, I was trying to arrange a craft themed meeting for Fair Access. I have found lots of disabled people are into crafts, and that’s how I got into them myself really – by looking for a hobby that could distract me from the pain. I suddenly realised the craft theme could work on a larger scale – by getting a large hall, and having lots of different crafters in giving small lessons. For example someone would come in a pay a small fee to make a bracelet, or a card, or paint something. That way people get to do something fun and try out something they may not have done before. It’s expensive starting a new hobby, and you want to make sure you’ll like it before you spend money.
I thought I could have some tables selling crafts, some children’s stuff and maybe a raffle or something.