In my experience, and considering the usual newspaper articles about ‘benefit cheats’ and ‘scroungers’, most people think that the UK benefit system is pretty lax and a lot of people are exploiting it in some way. This post presents a starkly different reality, and shocking statistics even for those accustomed to hearing about how painful experiences of the benefit system can be for disabled people.
Since developing chronic pain, I’ve been surprised by the general unhelpful nature of information out there. My friends and family thought doctors would solve everything, but to be honest they didn’t do much to help me, and physio didn’t work for me either. I’ve written this post to share some of the things that really did work for me, and that I wish I’d thought of trying sooner. Don’t worry, none of it involves some weird snakeskin oil on Amazon or anything like that ‒ it’s all quite general stuff and best of all, it won’t cost you anything or take a large amount of time!
And no, I’m not going to do the usual and suggest you eat well, exercise and try to get a good night’s sleep.
Typical advice for managing pain can sometimes be quite depressing for those who have tried the suggestions already and not found them possible or helpful. So, time for some new ideas!
I first began properly analysing on the advice of a speech therapist. She wanted me to map out the times of day when using my voice was painful and to note whether various things had positive, neutral or negative effects on it. Through this analysis, I discovered that steam inhalation helped, as did gargling, certain reflux medications and voice relaxation techniques, while other things didn’t help.
I continued this investigative approach for some time, playing around with the times I took medication (with my doctor’s approval) and the times I did inhalation and voice exercises. In particular, gargling and taking Gaviscon before making a phone call really helped, as did spreading out my reflux medications across the day and not talking in the morning until I’d done an inhalation and had a cup of tea to warm and moisten my vocal cords.
To get started, I’d advise you make a chart with each hour of the day down one side and all the things you can think of that might influence your pain levels down the other. Then note in each box when you’ve done something and what your pain level was. This will help you find trends.
When I did this with the leg pain I experience, I discovered that doing things earlier in the day and resting in the evening allowed my leg pain to ease off before bed – since pain when trying to sleep was the biggest issue for me, this was a great discovery.
If you have a chart like this, you can also use it to monitor the effects of medication changes or changes in physio exercises, and so on. You can note your pain levels out of 10 if you find that useful, or just describe it. By doing this, I’ve been able to clearly evaluate the effects of various insoles and changes to my routines.
There is a possibility that your pain is truly random, but you won’t know unless you investigate it.
Find your limits and decide when to be flexible with them
Once you are taking note of your pain levels and activity levels, you can more easily manage your pain. Of course, in some instances you will not have control over triggers e.g. work or childcare responsibilities. Some things you won’t be able to change. But you may still discover or think of adaptations that could help you at work or when caring for kids, such as ways not to do so much lifting (e.g. take files out of a box and lift individually rather than lifting the whole box) or ways to rearrange your time (e.g. taking kids to the park in the morning rather than afternoon).
Once you have done your best to arrange your medications and carry out activities in the optimal way, you can think about spreading your activities out over the day or week. For example, maybe you can do half an hour of cleaning daily rather than doing it all at once on Wednesdays. The usefulness of setting limits and spreading things out is that it may get you out of that boom and bust cycle where you constantly do a lot, get lots of pain and have to rest, then do a lot again… For some people, this will be unavoidable due to inflexible commitments but for many it will be possible to exert some control. While it can be annoying to have limits on how much you can do, it can also be amazing to have fairly stable pain levels and less unpredictability. You won’t need to cancel plans so much (if at all) and you may be able to stop using ‘flare-up meds’. Your friends, colleagues and family can also get some certainty regarding how much you can do.
You might also like to consider when you will be prepared to go beyond your limits and accept that you will have some flare up afterwards e.g. for friends’ birthdays, weddings, a favourite hobby, a work training day etc. If possible, you can then plan to take it easy on the following day(s), or take extra medication.
There is a risk your life will become less spontaneous and fun if you follow your limits strictly: it’s up to you to weigh up the pros and cons of such an approach.
Focus on pain-free parts of the body
This technique is really obvious in a way but it doesn’t crop up in many places. In fact, many will advise you to investigate the pain. This has some advantages e.g. you may realise it’s not as bad as you thought and you may be able to observe it in a less emotional way, even noticing there are some pleasurable aspects to it, such as some warmth or tingling. However, what has really helped me is focusing on pain-free parts of the body. Our mind tends to zoom in on pain. It wants us to be fully aware it’s there, presumably to encourage us to try to stop it. However, with chronic pain this focusing is useless and unpleasant. Keep taking your mind to a different body part, if you have something that’s pain free. It can even be a bit of a surprise to remember it’s not actually you’re whole body that’s in pain! And this may even help reduce the tendency of strengthened neural pathways to form between the painful body part and your brain.
An alternative version of this is imagining a soothing sensation filling the area where you have pain.
Check out my post on how to prepare for a physio/hydro appointment, if appropriate
Remember that you are a hero, even if no one but you knows it. Living with pain is super hard and many people will not understand that but congratulate yourself every day for soldiering on.
Treat yourself with love and compassion when you accidentally go beyond your limits. We all do it, regularly, and you shouldn’t blame yourself. Learn to let go.
Cast off the ignorant remarks of ignorant people. Life’s too short. Seek support in those who understand, and try to educate people when you get the chance (see my post on the taboo of chronic pain).
Have you tried any of these tips? Or do you have some of your own? Comment below!
Managing chronic pain:
Useful strategies, such as shifting your focus:
A free meditation:
My favourite chronic pain bloggers, who have useful coping tips and strategies:
There is a questionnaire used to supposedly identify ‘fear of movement’ called the Tampa Scale. While I would certainly agree that it is worth identifying which patients have wrong beliefs about their condition and the effects of exercise, I also have serious concerns over some of the elements of this questionnaire. It just doesn’t seem like a rational questionnaire, and yet is very widely used and, it seems, rarely questioned.
I’m going to start with my suggested alternative, then go over the items on the original Tampa scale that I think are not going to help identify mistaken beliefs that could be causing a patient to avoid exercise and activity.
Suggested alternative to the Tampa Scale (for identifying mistaken beliefs − obviously some are true and some untrue as in the original):
|1. I need to move as little as possible to avoid injury||1||2||3||4|
|2. Just because something aggravates my pain that usually does not mean it is dangerous||1||2||3||4|
|3. Sometimes it is a good idea to exercise even though it’s painful||1||2||3||4|
|4. When people with pain gradually increase their level of activity, they often don’t experience increased pain||1||2||3||4|
|5. Although my condition is painful, I would probably be healthier if I were more physically active||1||2||3||4|
|6. Even though something is causing me a bit of pain, I don’t think it’s actually dangerous||1||2||3||4|
|7. Some people with chronic pain find that exercise reduces their pain levels||1||2||3||4|
|8. If I exercise less, I’ll get weaker and am then likely to experience more pain||1||2||3||4|
|9. Worries about injury put me off exercising||1||2||3||4|
|10. Pain always means I have injured my body||1||2||3||4|
|11. Pain always means I have injured my body||1||2||3||4|
|12. Simply being careful that I do not make any unnecessary movements is the safest thing I can do to prevent my pain from worsening||1||2||3||4|
Now for my analysis of the original
The ones that make sense (ish):
|3. My body is telling me I have something dangerously wrong. (I suppose ‘dangerously’ suggests an element of dramatization if the problem is not life-threatening etc… though surely more a sign of ‘catastrophising’ than movement avoidance?)
Similar to: 11. I wouldn’t have this much pain if there weren’t something potentially dangerous going on in my body.
|7. Pain always means I have injured my body.
(Probably the most useful one in my view, as this is definitely false and a harmful view.)
|8. Just because something aggravates my pain does not mean it is dangerous. (Very similar to number 7. Patients need to be informed this is true, if they are not aware it is. Though I would suggest amending it to ‘Just because something aggravates my pain usually does not mean it is dangerous’ because sometimes pain is a sign of danger, obviously! Pain can warn us we are about to tear or break something.)|
|10. Simply being careful that I do not make any unnecessary movements is the safest thing I can do to prevent my pain from worsening. (Does sound a bit extreme, and shows lack of awareness that inactivity may increase pain long-term.)
Related to: 17. No one should have to exercise when he/she is in pain. (Quite moralistic but I suppose passible. ‘Sometimes it is a good idea to exercise even though it’s painful’ would be better.)
|14. It’s really not safe for a person with a condition like mine to be physically active. (Probably a wrong belief in most cases where the questionnaire would be used, so fair enough.)|
The ones that are problematic either in general or for some conditions (such as Ehlers Danlos):
|2. If I were to try to overcome it, my pain would increase. (Sounds like an unhealthy battle that might well happen that way! Pacing and acceptance of pain are surely more accepted approaches? How about ‘Gradually increasing my level of activity often doesn’t lead to increased pain’?)|
|5. People aren’t taking my medical condition seriously enough. (No comment needed surely?! Whoever thought that was a sensible one?)|
|4. My pain would probably be relieved if I were to exercise. (For many people this won’t be true, so strongly disagreeing is the rational option.)
The same goes for: 12. Although my condition is painful, I would be better off if I were physically active. (What does ‘better off’ mean? Why not say ‘healthier’? That would be true in more cases. Being physically active – another subjective term – might make some people less happy due to the increased pain and fatigue and so ‘better off’ might not feel appropriate to them.)
|6. My accident has put my body at risk for the rest of my life. (Ambiguous. Surely accidents do create a greater risk of re-injury in many cases? Or does it mean at risk of death, which probably would be a wrong belief?)
See also: 1. I’m afraid that I might injure myself if I exercise. (In some cases this might be highly unlikely, in other cases quite likely e.g. if you have EDS and are prone to dislocations and sprains, even during very mild exercise).
The same applies to: 9. I am afraid that I might injure myself accidentally.
A related one is: 13. Pain lets me know when to stop exercising so that I don’t injure myself. (Again, is this really unreasonable in all cases? Since when was completely ignoring pain a good idea?)
And: 15. I can’t do all the things normal people do because it’s too easy for me to get injured. (People with EDS are generally advised to avoid contact sports, for example, so again this is not going to be unreasonable in all cases.)
Also: 16. Even though something is causing me a lot of pain, I don’t think it’s actually dangerous. (Are we really advocating that people do things that cause a lot of pain? I’ve generally not been advised to do that, and indeed if something does cause a lot of pain that could be a sign you are about to or have injured yourself.)
Are you a medical practitioner or patient? I’d love to hear your views!
Do also check out my post on re-examining the concept of kinesiophobia in chronic pain patients.
(This post is especially relevant to doctors and physiotherapists and others who work with those in chronic pain)
What many physiotherapists and doctors don’t understand about chronic pain
In medical jargon there is the expression kinesiophobia, ‘fear of movement’. I’ve always found this an odd concept. It is said that many chronic pain patients experience a fear of movement because of associating movement with pain. So, the assumption is that they fear pain. Those with chronic pain are, by definition, those who live with the most pain. It doesn’t seem natural to me to talk of fearing something that is already a major part of your life. If you wear a suit to work every day – you may dislike it, sure, but you wouldn’t fear it, would you? You might wear it only when obliged to do so, and wear super-casual clothes the rest of the time i.e. you may well limit your exposure to it, but fearing it would be unusual.
Chronic pain is something only those who experience it can truly understand. It isn’t accurate to think ‘well, I know what pain is, so chronic pain is just having that a lot of the time’ (which those without chronic pain tend to think either sounds awful or not too bad at all). Prior to getting chronic pain I regularly played full-contact rugby. I loved it. I loved tackling people. I didn’t mind the bloody lip, the bruises and feeling a bit battered. Doing this once a week was, however, NOT a taste of chronic pain in any way. Nor was ju-jitsu, or taekwondo, or boxing. Nor was period pain, or toothache, or a headache. The relentlessness (and total pointlessness of the pain) is not possible to imagine until it happens to you.
Imagine you enjoy sitting out in the garden when it’s sunny. One day it’s raining and someone asks you why you’re not sitting in the garden. Er, duh. It’s not much fun in the rain. Do you fear rain? No, it’s just not enjoyable sitting out when it’s raining. So why do some medical professionals really have a problem understanding that people’s preferences change when they live with chronic pain? If anyone wants me to live like I did prior to chronic pain, I want them to sit out in the rain, and enjoy it.
Movement avoidance isn’t necessarily due to fear of harm either
Now imagine you’re someone who enjoys going on walks and also reading. Imagine that you have the option to either read for a while or go for a walk while someone repeatedly stabs you in the neck with a fork, and you can’t stop them. I think I can guess what you’d choose. And what if someone tells you that, although the fork stabbing might be unpleasant, it’s not harmful. You’re still choosing reading, right?
Now what do you think about patients who avoid some pain-inducing activities, choosing to do something else instead?
Only when someone tells you that if you don’t choose the walk you’ll get unfit and get stabbed with a fork during even more activities would you reconsider.
A common belief is that patients avoid movement because they believe pain signifies damage to the body. Well, I’m sure some people do, and it’s certainly right to point out that pain can be completely meaningless and unhelpful, as is often the case with chronic pain.
But that’s not necessarily going to make someone start being as active as they used to be, because some activities are just not appealing any more, or not as appealing as pain-free options. I get headaches watching films, so don’t do it as often as I used to, but have gained a great love for podcasts and audiobooks. I’m not scared of the pain watching a film brings on… I’d just rather do something else.
Of course, what really is an issue and what patients do need to know is that if they avoid all physical activity, they’ll lose muscle tone and may experience more pain in the long run. Knowing this will potentially reduce ‘movement avoidance’ in patients who are motivated by long-term goals; perhaps not so much others.
Also, I’ve come across a few things recently suggesting the role of physiotherapists when dealing with chronic pain patients is to get them moving more. Hmm. Well, if that’s what the patient wants, fine. I’m not totally sure, however, that everyone goes to a physiotherapist wanting to be persuaded to sit out in the rain more, or spend more time getting stabbed with a fork, to continue the metaphors.
More exercise doesn’t always mean less pain long term
As far as I’m aware, it has not been proven that people with all types of chronic pain will be able to get back to their previous level of activity if they do it gradually. I’ve really tried, both with sudden increases in activity and the opposite, gradually increasing walking time by just one minute per month. In neither case did my pain levels decrease and in neither case was I able to keep up the increase, as the increased pain interfered too much with my sleep. I recognise that many people may find that doing more activity builds muscle and enables them to do more with less pain: but it can’t be the case for absolutely everyone.
For me and for many others, limiting movement is about keeping pain levels bearable and being able to work, sleep and enjoy life as much as possible. It’s not always about fear or a poor understanding of pain, or even poor motivation levels. It is a way of coping and it is a pain management system. It might be the best option for some of us, and though exercise-loving physios may struggle to understand, life’s not all about physical activity. Since developing chronic pain, I’ve really enjoyed doing more art, writing, reading and listening to the radio. I do what exercise I can each day, ideally a short walk in my area looking at the nice gardens and the wonderful lake, and sometimes chores and a few all-body exercises. Chronic pain sometimes requires adaptation and change, and perhaps medical professionals should take the time to delve a little deeper into why a patient is avoiding some things, what could help them to do it again, and whether they have found any alternatives.
For me, whenever I consider any religion, two big questions arise: 1. Is it plausible? and 2. Is it helpful? I think the law of attraction is a new religion that is steadily growing, largely unnoticed, and it’s about time we all had a good look at it. This post will cover ‘Is it plausible?’ and in a future post I will look at the second question.
What is the law of attraction?
The basic principle of the law of attraction is that you tell ‘the universe’ what you want in a specific way, and it will be delivered to you. In their words:
‘Visualize your message as a letter with ‘The Universe‘ printed on its envelope as an address… If you were waiting for new shoes, perhaps you would make space in your shoe rack. Likewise, make space in your life for the order that you have placed with the universe….Speak, walk, talk and breathe as if your reality has already changed for the better, and your original message will be delivered.’ 
It falls in a category involving a host of other beliefs such as belief in chakras and ‘energy therapies’.
A new religion
The United Kingdom has, of late, very much become the land of atheists or, at least, those who identify as having no religion (48.5% in 2014, outnumbering the 43.8% who define themselves as Christian). And yet I have become increasingly aware of a new religion, one that many might not call a religion but which I suggest should be seen as one: the law of attraction. It requires faith and something similar to prayer. It offers to its followers rich rewards. And it has a community of followers with their own online and real-life groups where they meet up and talk about using the principles of this ‘law’ in their lives (at the time of writing, on Meetup alone, law of attraction groups have over 1 million members!).
‘The Secret’ by Rhonda Byrne is a book on the Law of attraction that is, according to the book’s website, a worldwide best seller available in 50 languages with over 20 million copies in print. 
Its followers may well disagree with me and say ‘a religion? Oh no, it’s just another law of the universe like gravity’. But this is not very different to how followers of other religions will also tell you that God is real, a fact. The only difference is that churches don’t necessarily try to convince you God is real by reference to quantum physics (though a few probably do).
I had a message once from someone renting out rooms who thought I might like to live there. Based on me having said meditation is one of my interests, this home-owner told me that he and other persons in the house were law of attraction believers and another person there was a ‘heretic’. A jokey remark, of course, but, I think, hinting at a deeper, and more disturbing, reality.
While most religious people nowadays are aware that others may not believe in God and are usually quite discreet about their beliefs, the same can’t always be said about law of attraction followers. Those who believe that the law of attraction is a real phenomenon can say things such as “I know a great person who can really help with blocked energies”. They don’t realise that the existence of personal energies has not been proven or they assume that for some reason you will share their beliefs (e.g. because you both like meditation). I am constantly coming across law of attraction believers, and it’s time to speak out.
The essence of the law of attraction is as follows: ‘Whether we are doing it knowingly or unknowingly, every second of our existence, we are acting as human magnets sending out our thoughts and emotions and attracting back more of what we have put out.’  ‘When we fill ourselves with negative energies and emotions such as fear, anger, sadness or general pessimism, our frequency is lowered and the universe can only expand on this, promoting greater negativity in our lives.’
As with all religions, no hint of doubt in the phrasing there. But is this real science?
I have been unable to find any genuine, qualified scientist supporting the proposition that we send out different vibrations according to how we feel. And, even were that the case, it would need to be proven that such vibrations attract things to us such as new jobs, new partners, money, illness, etc.
Some refer to experiments on water: however, these are by no means accepted by the scientific community, may not have followed scientific methods, and the ‘scientist’ who carried them out is not well qualified or widely respected . It is also unclear how these ‘experiments’ (where people acted in various ways towards water: really!) could prove the idea that we can send out ‘positive vibrations’ to bring us what we want.
While most of us rely on Google as our main signpost to sources of knowledge, this is not necessarily wise. The top links resulting from a Google search are, presumably, usually companies who have hired a search engine optimisation firm to get them there. Life coaches and energy medicine practitioners need you to find them in a Google search and, as a result, if you search for ‘human energies’ or such, you will find material from those who rely on such pseudoscience to make money.
Really the only major balance to all of them is https://sciencebasedmedicine.org, which clearly states ‘Scientists can detect and measure minute energies down to the subatomic level, but they have never detected a “human energy field.”’  This website contains articles written by qualified scientists who expose the pseudoscience so commonly used by practitioners of ‘energy medicine’ such as reiki. While believers of the law of attraction may not also believe in ‘energy medicine’ and vice versa, there is often an overlap and ultimately both rely on similar claims (e.g. that energy can be purposely sent out from our body to do things like order us new shoes or heal someone’s bad back).
Writers at the New York Times, Psychology Today and some other sources have also refuted the law of attraction .
But what about anecdotes where it has ‘worked’?
The law of attraction and the philosophy around it share some similarities with common sense psychology, and so may sometimes appear to work. Psychological studies have long acknowledged the ‘self-fulfilling prophecy’ whereby, for example, someone who is always told they are bad at maths may indeed do badly in maths exams due to their poor self-confidence . Likewise those with good self-confidence will probably achieve most in life due to their willingness to try new things and their belief that their endeavours are worthwhile and will pay off. There is nothing radical about this. Believing goals are attainable is crucial to keep us motivated and determined, and believers of the law of attraction are likely to have such a belief.
Elements of the law of attraction are backed up by fact or simply obvious, such as this statement taken from thelawofattraction.com home page:
‘A key part of the Law of Attraction is understanding that where you place your focus can have an intense impact on what happens to you. If you spend your days wallowing in regrets about the past or fears of the future, you’ll likely see more negativity appearing, but if you look for the silver lining in every experience then you’ll soon start to see positivity surrounding you every day.’
People who want to see positive change in their lives don’t need to consult the law of attraction website, books or groups. There are plenty of other sources that can help people and which don’t rely on fake science. Not only that, but there are sources of help that have been tested by eminent psychologists (such as Martin Seligman, Rick Hanson and others), unlike the law of attraction. The law of attraction can actually lead people to worse mental health, as will be discussed in my next post.
As for ‘energy medicine’, it can work by causing relaxation and stress relief and due to the placebo effect. So, yes, it may help but it may also cost people a lot of money and cause them to fail to pursue more useful (and more scientific) remedies.
Left unchallenged, these beliefs will spread. After centuries of truth-seeking and moving away from believing the earth is flat and lightning is God’s wrath, we are at risk of slipping back into superstition and investing great time and money in such beliefs. Google isn’t helping. The internet is awash with support for this theory and proper analysis is hard to find. The same is true for energy medicine. Next time you meet someone who assumes you are a believer, please show you aren’t. Please share this post, or one in the related links below, and help us keep on the path of truth and wisdom.
This is not another of those articles urging you to take up a ‘digital detox’. But nor is it a biased post with a commercial ulterior motive. These are my reflections on the social media age that we woke up to one morning. At least, that’s how it seems to me. I’m old enough to remember the pre-digital era, but only just. Like most of us, I slipped into using Facebook without a second thought. It went from a niche network of university friends to an online network with an astounding 1.94 billion active monthly users, according to Statista . Rarely has anything so suddenly infiltrated so many parts of our lives, with Facebook messaging often replacing email or text, with photos often being shared in the network, political viewpoints announced to the world, objects bought and sold, jobs advertised, groups formed… the list goes on. But how many of us have really stopped to think about how we use it and how well it serves us? It took me a while to do so, but I’m mighty glad I did. Here are some of the things I thought about social media use (especially Facebook, but also other network.
Something that often comes up when you talk to people about Facebook is the green-eyed-monster that rises up in us as we scroll down the news feed. Instagram feeds can provoke similar issues. For many, the feed is composed of people showing what a great time they’re having, and, in many cases, how many friends they supposedly have (in the form of likes). No matter how much we tell ourselves we know it’s just a facade and that the number of likes is pretty meaningless, do we believe it? According to new research by disability charity Scope, 62% of Facebook and Twitter users felt their own achievements were inadequate when compared to the posts of others, and 60% said that the sites had made them jealous of other users . The test, I think, is to observe how you feel as you scroll down. Do you feel happy for the people there? Bored? Envious? Competitive? Depressed? Then let your feelings dictate what you do next, be it continuing as you are, limiting how long you spend on Facebook, stopping viewing the news feed or leaving Facebook altogether. For me, this reflection led me to stop viewing the news feed and I chose a photography page I like to be listed first so that generally when I log in I see its latest post. I find that now I more often message friends directly to see what they’re doing, which leads me on to the next point…
Another issue I’ve heard discussed is the unsatisfying nature of relationships that don’t exist beyond Facebook. Much as it’s nice when someone likes something you post, it’s not a conversation. I do sometimes wonder if actual one-to-one communication has diminished because people spend idle moments scrolling through the news feed rather than sending a text or giving someone a call. Ever since I stopped using the news feed, I’ve definitely been interacting more with people one-to-one, which I find so much more satisfying.
Of course, it is possible to get into discussions on Facebook, but it’s not something I see a lot of. WordPress is much better for in-depth discussion I find, while Twitter is rather worse, due to the character limits.
That said, apparently finding out you’ve received a ‘like’ literally gives you a mini high , so on one level it is quite satisfying.
Good for groups
In my experience, Facebook is quite good for groups. It’s easy to set one up and people don’t need to log in twice. It’s easy to share photos and videos and comment on them. Facebook groups are the reason I’m still using the network. Of course, face-to-face groups are great too, probably more so, but Facebook groups have the upper hand when it comes to convenience and reaching people from all over the world. Again, it’s no doubt well worth checking in with how you actually feel when you use online groups; if you’re just getting into arguments or using it as a distraction, it might be time to leave.
Facebook: the graveyard of friendships, if you don’t have regular ‘clear outs’
A friend once described Facebook in this way as we chatted about its negative side. It struck a chord right away. I’ve never found the time or the heart to do a ‘friend cull’ and about 80% of my Facebook ‘friends’ are people I knew long ago. Needless to say, the Facebook algorithms love to let me know that some person I once vaguely knew is happily married, or has had a baby. Facebook also likes to remind me of people I was once friends with via it’s ‘what you were doing x years ago’ feature.
Facebook can be great when you are at school or university with a big network of real-life connections, and you’re meeting new people all the time, but when it begins to look and feel like a dismal graveyard it’s time to either do that cull (hopefully if there’s been no contact for several years no-one will take offence), stop looking at the news feed or leave.
If you keep your network fairly small, maybe the news feed items will provide a genuine encouragement to stay in touch with more distant friends rather than simply informing you about people you’ve ceased to care about.
Political tools, but use with care
I have mixed feelings about politics and social media. Certainly we now have the opportunity to find likeminded people from all over the world and co-ordinate political action. But we also have the opportunity to rant and say the first thing that comes into our head. To anonymously intimidate and threaten. To be highly reactive, not reflective. And to sound off in an (often rather depressing/angry) echo chamber of people who share our views, or bombard those who will simply ‘mute’ us as soon as they see a view they don’t agree with. I’d much rather read a considered blog post, or listen to a vlog, and get into a discussion around that. And I think face-to-face discussion with people we know is probably more likely to impact on their views than a ranty post.
As for getting informed about politics and news on social media, it’s certainly more fun than newspapers but of course there is the risk of fake news when there’s no-one vetting the accuracy of the posts. Social media is also a convenient soapbox for populist characters to make all sorts of claims (you know who I mean, I’m sure…).
Social media use can make us too focused on ourselves and on selfish goals
On the whole, people are happier when they see the bigger picture in life. The more I focus on MY popularity, my likes, my photos and so on, the more self-absorbed I am. We all know someone who is constantly uploading pictures of themselves, and this intense focus on appearance can’t be good for us. Not everyone is comfortable with the idea of having a ‘brand’ either. I want my friends to be my friends on good and bad days, through boredom and adventure, regardless of my popularity or attractiveness. For me, that means having real-world friends and not investing too much time in the airbrushed version of myself that social media so strongly encourages.
I’m also not really a fan of the fact that Facebook posts are so often about marriage and kids. I’m not sure if it’s their algorithms doing this or purely what gets the most likes, but, while I have nothing against marriage or starting a family, I’d rather see posts about people making the world a better place more generally. And I’d rather see creativity than the consumerism encouraged by checking in and constantly posting about restaurants etc.
I even read that the more photogenic dogs are the most popular ones to be taken from dog rescue centres. No doubt some people even get a pet purely to get more likes – pretty silly.
Thinking about these aspects has reinforced my decision to avoid the news feed, which is even easier if you have the messenger app so don’t need to log into Facebook to see your messages. I only post about myself from time to time and always try to remind myself that I’m not on a quest for likes. Another thing that’s interesting to do is to ask yourself why you are thinking of posting something, and if it’s a very shallow reason, decide not to do it.
Facebook is good for appreciation, but is it creating an environment of forced positivity?
The comments that tend to get most likes are positive ones, and I’d certainly agree that it’s wise to appreciate the good things in our lives. However, I do wonder if the fact that most comments are of the ‘I’m so happy’ type might be making it more difficult for people to talk about their struggles. Prior to the introduction of the sad face, angry face and amazed face, negative posts usually received little reaction, and maybe the introduction of those other options came too late to change the fact that most posts are of the gloating kind. In my experience, it’s only worth airing your troubles on Facebook within the context of a support group.
A few other thoughts:
– encouragement of procrastination
– distraction from work/family/relationship/social life/crossing the street safely!
– there are a lot of bots and prostitutes on some networks
– Twitter is extremely commercial: it can be hard to use it for social ends when so many users have commercial aims
– social networks are great for sharing information, and indeed I use them to share bits of ‘unconventional wisdom’ and these posts
– easy to connect with people around the world
– sometimes an enjoyable distraction during a tea break etc.
What are your thoughts? How do you use social media? Would you like to change how you use it? Share your thoughts below.
Related links: (some of many!)
This article is specifically for those with chronic pain (of any type but especially from joint hypermobility syndrome/Ehlers-Danlos type III). While some people find that physiotherapy goes smoothly, others (especially with EDS) can find it very problematic. This post aims to help eliminate some of the problems that might occur by proposing novel ideas on preparing for your physio appointments.
Clarify the aims
Ask what the point of things are. Is this a test of your muscle strength? Are they checking if you’ve torn anything? How will the exercises they’ve suggested help you? Do they think your pain levels will decrease as a result of the exercises? After months and months of physio, with no results, I felt very in the dark about what it had all been about.
Practice saying ‘no’ (politely)
Going to your first physiotherapy session can be much like P.E. at school. Someone is telling to do various movements, and this might not have happened since those days of smelly changing rooms and uncomfortable P.E. kits. It can be hard to realise this key fact: YOU ARE NOW AN ADULT AND THE PHYSIO IS NOT YOUR P.E. TEACHER. You might think this is obvious, but, trust me, it is so easy to feel you have to do whatever they say. I know I did, for several years, and deeply regret it! The truth is, you know your body and your pain levels much better than they do. If you know they are asking you to do something that will leave you in agony for the rest of the day, say ‘no’. If you know you’ve reached your limits, but they want you to do more, say ‘no’. Don’t just do it and then go home and repeatedly beat yourself up or mutter obscenities about the physio. Go and get some assertiveness self-help books if need be.
You can say things like:
‘I’d rather do that exercise later, when I’ve had chance to recover from this appointment.’
‘I’m not keen on doing that, as it will cause me a lot of pain. Is there an alternative?’
‘I’d like to stop now as I think I’ve reached my limit. Perhaps you can show me the other exercises at my next appointment.’
‘Please can we move more gradually? I’m experiencing very high pain levels already.’
And if you find yourself mutely obeying and regretting it later: don’t beat yourself up. I did it for years. I still am: it’s just so easily done.
Learn about pacing, and be prepared to mention it
Pacing, in this context, is about moving gradually, and avoiding ‘boom and bust’, which is when you do too much, have to rest, then feel better and do too much again, in an endless cycle. Physiotherapy can perpetuate this cycle, if you’re regularly asked to do too much. The physiotherapist should only be asking you to increase activity/exercises very gradually. If that’s not the case, you may wish to ask if they can go more slowly, as you feel your pain levels are getting out of control.
Don’t prioritise physio exercises over your actual life
By this, I mean if doing the physio exercises is leaving you in too much pain to cook, clean, see your friends, or work, there is a problem. You are doing too much, and it’s going to make you depressed and/or frustrated with life. Tell the physio what is going on. Tell them that you aren’t willing to sacrifice your life to do their exercises. Discuss with the physio whether some everyday activities can stand in for certain exercises.
Don’t allow your pain levels to become severe
If your pain levels feel too high, tell the physio. Give them a pain score out of ten relating to the exercises they are asking you to do. They’re probably not going to ask you about your pain levels, and they can’t read your mind. I once had a physio who kept pushing me to do more and more. I felt she was dissatisfied with my progress, and told her my pain levels were at 9/10 all the time so I really was trying. She seemed quite surprised, and sympathetic, and enquired about my pain medication. You might need to see your GP about exploring new methods of pain relief, if you haven’t already. Physio is meant to improve your life: it’s not an endurance test.
Evaluate the process and use your judgment
If you feel something isn’t working, say so. Consider cutting it out. For me, hamstring stretches often caused pain which would last for the whole day. I wasn’t feeling any benefit from them. I cut it out, and never looked back.
You might even find that physiotherapy as a whole isn’t helping. If you get to the point where it seems pointless, perhaps having seen a few different physios over a few months, be prepared to stop going. Physiotherapy doesn’t help everyone.
Do, however, maintain as much activity as you can, which is very important if you have JHS/EDS III. Even a month of less activity can lead to increased pain and disability in the long run: something I experienced the hard way. Set yourself goals for each day so that you maintain (or, if possible, improve) your strength and fitness. On your last physio session, ask for exercises to tone pain-free parts of your body, if appropriate.
Or if you feel you’ve got the picture and can continue gradually increasing the physio exercises by yourself, discuss it with the physio. They might agree you can just continue on your own, saving you from attending further sessions, which can often be quite a big hassle for someone with JHS.
Other useful questions related to JHS/EDS:
Do you think my proprioception/balance and spatial awareness may need some work?
Do you think I might need some guidance on how to avoid over-extending my joints?
Could you give me some exercises to ensure I’m strengthening all the joints in my body, not just the painful ones?
Could this exercise/stretch aggravate my tendency to over-extend this joint?
Are you a physio? Or have you done physio? Have something to say about this article? Leave a comment below.
A form you might want to use after your first appointment to prepare feedback for your second (I highly recommend doing this!):
An article aimed at physios: http://www.csp.org.uk/frontline/article/stretching-point-hypermobility-joints-physiotherapy-research#comment-form
EDS-specific advice on preparing for a doctor’s appointment: http://www.edhs.info/#!about1/c21rn
Another article aimed at physios on communicating about chronic pain to patients: https://healthskills.wordpress.com/2016/09/26/i-know-my-pain-doesnt-mean-im-damaging-myself-but-i-still-have-pain/
An article on miscommunication between patients and physios: