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5 Things People Need to Know About Living with Chronic Pain

It might be easy to think that living with chronic pain is similar to living with short-term pain over a longer period of time, and, well it sort of is. And yet it sort of isn’t. Whilst pain is pain and there are varying different types and scales of it, a lot of which are very subjective to the individual feeling the it; there are also a series of other things to contend with once the pain starts to stretch into longer period of time.

Below I have tried to explain some of these other ‘things’ to help create an awareness of life living with chronic pain, which can at times feel difficult to express to others.

1. It’s Exhausting

Not only is it exhausting, it’s fatiguing, and that can be difficult to explain. So difficult that I know it can be a major source of frustration in the chronic illness and chronic pain communities. Nothing can inflict quite the same daggers from a chronic sufferer as the statement ‘I’m really fatigued I need to sit down’ being followed by ‘I know I feel really tired as well’.

The fact is having been healthy, and now being less so, I can confirm that a healthy persons tired and a chronically ill, disabled or chronic pain sufferers fatigue are not the same. However, I don’t personally feel it’s something we should feel quite so cross about.

Can it be annoying when someone says that? Of course! Because it feels like our condition is being minimised. If we are feeling really sensitive, it can feel like a general statement of disscontempt. ‘If they think my fatigue is the same as ‘a bit tired’, then they must think I’m a wuss! That I am just over-dramatising regular every day feelings and turning them into an excuse to be lazy. They must think…’

I could go on all day! But the key here is to remember is that most people aren’t thinking about other people (i.e. us) in their heads as much as we think they do. It’s more likely that either a) they were trying to take an opportunity to show sympathy and understanding in the best way they could at the time; or b) you saying you were fatigued triggered them to realise how tired they felt and verbalise it. In the majority of cases that’s probably it.

So for the non-chronic pain/fatigue sufferer, how can this fatigue be described. I can only describe it as feeling as though your body is trying to move through treacle, having just swallowed a massive dose of sedative. Think Duracell Bunny but with the cheap knock off batteries in his back, as he comes g r i n d i n g   s l o w l y  t o  a  h a l t, and then falls over.

Anyway, you get the point. Pain has a knock on effect of fatigue and just like the pain itself, that fatigue can effect us all differently. But ultimately it’s important that this doesn’t turn into a competition or even a war between chronic ill health sufferers, and the healthies. Instead it is an opportunity to gain understanding. In the same way I don’t want my fatigue to be minimised by your tired, I simultaneously don’t want your exhaustion to be diminished by fatigue.

2. It Makes Me Grumpy

My general modus operandi is the brave face. Keep smiling, keep laughing and keep going. In my books if no one has noticed I’m in pain it’s been a successful day! Because, at the end of the day if I’ve fooled everyone else I have probably fooled myself a little as well and that’s great!

However, there are some days, some times, when the pain may have been a little bit too full on, for just a little bit too long and it just tips me over from brave face into grumpy face.

It’s never my intention to take my suffering out on others, but sometimes living with chronic pain can get a bit much and my smiling demeanour may break or my easygoing self snap, literally, like a crocodile.

If you are reading this as a member of my immediate family, then you have already learned that this is a symptom of the brave face approach to pain. By trying to keep it on the down low, I may be guilty of going a little too long without signalling that I need help or support. My husband knows that if I try to bite his head off for asking me we what we’re getting Great Aunt Nora for Christmas, then I’m probably in pain that I have not actually told anyone about.

At this point I am asked/told politely and firmly to sit down whilst various pain management options are listed to me until one that I find acceptable is hit upon. Usually after a little pre argument of ‘no I’m fine, no I don’t need to sit down, no I’ve told you I’m fine, just leave me alone.’ All delivered of course in a slightly terse and grumpy tone.

3. I may appear forgetful

Some conditions associated with pain can also cause a ‘brain fog’ that leaves sufferers scrambling for words, memories and in severe cases barely able to formulate a sentence. However living with chronic pain, caused by any condition causes an element of forgetfulness.

In my experience a large portion of the time (not all), it’s because I wasn’t listening in the first place.

Referring to point 2, if I’m putting a brave face on, then my focus is just that. At times you may be talking to me and I may be smiling and nodding, but realistically only 50% of what your saying is going in. I’m not being rude, I’m just trying to have a simultaneous pain management strategy meeting in my mind, or perform a simultaneous pain meditation.

Trust me it’s better this way. Whilst I may forget that you told me I was supposed to be picking you up from the station at 5, at least I didn’t bite your head off for telling me.

4. Yes, I’ve tried acupuncture

Actually I haven’t. But the point is I have tried all of the available sources of relief that I want to at this time. This doesn’t mean your suggestion isn’t useful to me, and it may turn out to be amazing and I may go on to incorporate it into my pain management routine.

However, every Tom, Dick and Harry has a pain management solution they want to share, and for some sharing isn’t enough. They want to continue to share, question and cajole and they’re not going to rest until they’ve seen a selfie of you on Facebook with a carefully curated collection of 6 inch needles sticking out of your face.

I am always grateful and overwhelmed by the care of people who make suggestions about how I might relieve some of my pain, and so I really can’t get too grumpy about this one. But it is worth keeping in mind that for some sufferers it can be quite problematic.

Being someone who uses a lot of natural remedies for pain I have to be careful of this myself, it’s easy to fall into the trap of becoming this person, even though this person can be irritating to me. Of course, like everyone else who may be a little guilty of this one, I’m just so passionate about the things that have worked for me. I suppose the key is here is that there is no one size fits all, and so no one should feel harassed to try things your way. And I always say, advice given with kindness and love as the intention can only be taken one way.

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5. The Present Moment is the Only Sane Place to Be

If you have any type of condition which is known to worsen over time, or appears to be worsening, or if you haven’t yet got a diagnosis, therefore have no idea what the future holds, then the future can be a very scary place indeed. Even if your condition is fairly stable just the thinking about how you are going to continue to cope with these pain levels for one more day can be terrifying.

For me it’s if i’m in pain when lying in bed at night that the monster under my bed starts to grumble. It only takes a couple of fleeting thoughts about how much longer you can live like this or if it’s like this now, how will I cope if it get’s worse and before you know it your Alice, tumbling down a dark rabbit hole, into a scare pit of anxiety and crazy nightmares.

The fact in reality is that humans are incredible at coping. You can pick up a newspaper any day of the week and never fail to be amazed by what an individual or group of people have managed to cope with. However, the way to cope is to be present in the moment and fight the battle you have in front of you right now, not try and simultaneously fight a battle with your future that isn’t actually real.

Part of the problem with the present moment survival technique I find however, is that the present moment is so much safer, so much easier and less scary, that planning for the future can be difficult and something I sometimes am keen to avoid.

Even something joyous like planning a holiday can be filled with thoughts of, ‘but what if I relapse? What if I can’t travel? What if I need medical treatment?’ and so on and so on. Before you know it you just don’t plan the joyous things for the future as it becomes too complicated, choosing instead to entirely route yourself in the present and cutting all ties with your future.

Take Action in Supporting a Loved One Living with Chronic Pain

Agree a Bad Times Strategy

Choose a time when they’re not in pain, or in less pain, to discuss with them how they want you to support them if and when they do become overwhelmed by pain in the future. Have a home based and out and about plan. Don’t forget you can remind them, if they get a little stroppy, that this was what they asked you to do.

Intercept Triggers Compassionately

Keep an eye open for triggers that their pain may be worsening objectively and non judgementally. Let’s face it, when someone lives with a condition everyday and still gets in a pickle, because they ignored easy warning signs or pushed past comfortable levels it can be easy to feel frustrated with them, of course you are, you don’t  want to see them in pain!

But on the flip side, it can be frustrating being held back by disabling symptoms, and sometimes you want to push through, to enjoy the good time even though you’ll pay later, you only live once!

The compromise is spotting early signs and taking moderate actions that might prevent or delay onset of chronic pain. It sometimes can be helpful for a loved one to point these out for us, because we haven’t said anything as don’t want to seem like an imposition, again. It may just be as simple as suggesting we stop for a cup of tea and a sit down, without mentioning it’s because you can see your loved one flagging, just because you think it would be a nice thing to do. Let’s face it if the grump from point 2 is hanging around then there’s no shame in a bit of skilful manipulation, for their own benefit, of course.

Offer Practical Help and Support

Sometimes the kindest gesture is the simplest. ‘I’m going to take the kids to the park so you can soak your back in the bath for an hour’, for example.

Take the Pain Out of Long-Term Planning

Try and help elevate the stress of future planning by respecting your loved ones concerns and trying to help them come up with solutions rather than dismissing them or becoming frustrated by them. I do understand that sometimes these concerns can seem silly, or over the top. But ultimately the more we can plan positively for success the more successful we will be. Also the extra reassurance that someone else is considering these things, sharing the burden, is sometimes all the support we need.

Is there anything you feel is hard to explain to people about your life living with chronic pain? Is there anything I’ve mentioned that you’ve had a similar or different experience of? And if you are a loved one or colleague of a chronic pain sufferer, how does it feel from your side of the fence?

I’d love to hear from all of you in a loving and supporting way (of course).

Speak soon Wellness Warriors 💪 (and their loved ones) 😍,

Kate 

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