What’s it Like to Live With Pain — With a Capital P

I’ve been writing about what it’s like to live with pain for several years. I’ve also been living with this unwanted companion for several decades. Over that time, I’ve learned that P doesn’t just stand for Pain. It also stands for many other words related to living with pain.

What it’s Like to Live With Pain

There are many types of pain — chronic, persistent, acute, neuropathic, neurological and muscular are a few examples. Pain can feel different for everyone, and can even vary on a day-to-day basis. It can be piercing, aching, stabbing or burning. Or there might be pressure, pins and needles or sensations that are difficult to describe.

When pain is chronic or persistent, we live with it all the time, day and night. The only variation is in the severity.

Sometimes there’s no known cause for the pain we’re living with, and very often, there are no visible signs of the pain. But our pain is real, even though there is nothing to show for it and no explanation for it.

But the physical pain is only a small part of what we live with.

P is for PAIN. It’s Also For…

Painstaking

Living with pain day after day is difficult. The pain causes more than physical symptoms. It likes to bring along its friends to the party — brain fog, fear, guilt, anxiety and depression. The sheer exhaustion of living with pain can’t simply be fixed by getting a good night’s sleep, because that rarely happens. It takes a toll on relationships, careers and social life. Living with pain comes with a cost.

Pro-Active

Nothing is simple about living with pain. So many of us don’t get the help we need and deserve. Some doctors (not all, thankfully) aren’t prepared to listen or treat pain, so we need to be pro-active about our health. We often have to research, seek help and learn to advocate for ourselves. When we’re already dealing with the physical, mental and emotional effects of pain, this can become an extremely tiring, but necessary job.

Paying Attention

Sometimes pain can be caused or exacerbated by certain triggers, so we need to pay attention and listen carefully to what our bodies are trying to tell us.

Pacing

Not much can be done at speed when we’re living with pain. When we push too hard, pain often escalates, so we need to find a way around that. That normally means doing everything in small steps. Small steps often work better, because going too fast can cause a crash.

Preparing

On a better day, we have to prepare for worse days. That might mean planning and making food in advance. We also need to prepare for medical appointments and any plans we have. Sometimes those preparations have to start a few days in advance.

Personal Hygiene

Most people find showering or bathing refreshing, relaxing or even rejuvenating. Living with pain can make them difficult, painful and exhausting tasks. Often, they require practical equipment, support or help from another person. Daily showers can be too difficult when you’re in pain, and washing your hair can be almost impossible depending on your pain levels. Some conditions, such as trigeminal neuralgia and chronic migraines, can also make simple tasks like brushing your teeth, washing your hair or washing your face excruciatingly painful.

When you can’t manage personal hygiene, it can lead to embarrassment and loss of dignity. It can also lower self-esteem and contribute to depression. Nobody wants to live like that.

I’ve previously written about bathroom equipment that can make life easier.

Priorities

Some people have to-do lists. When we’re living with pain, we need priority lists. Some things in life are more important than others. For example, going to a doctor’s appointment might be more important than lunch with an old friend, and eating might be more important than showering. These are basic things, but they can be difficult when we’re living with pain. Sometimes we need to make choices that are difficult to make.

Pain Medication

Oh, the joys of taking medication with breakfast, lunch and dinner — but that is often the reality. Some might help enough to get us through the day. But some come with a long list of side effects that can make getting through the day even more difficult.

Problematic Pooing

Yes, I’m going here. This needs to be talked about. Normal bodily functions can become extremely difficult and painful due to the effects of pain and the medication we take for it. Chronic constipation, diarrhoea, bloating and gas can be common side effects of many medications. Doctors too often dish out prescriptions but forget about the painful side effects.

Partners, Family & Friends

When we’re living with chronic pain, it affects our partners, family and friends too. They are almost living with our pain alongside us. They might see our struggles on a daily basis and find it difficult because they don’t know how to make life better for us.

Sadly, some people don’t want to stay. Some feel that they can’t bear to see our suffering, so they leave.

But we are grateful to those who stay and offer their support.

Practical Help

When simple everyday tasks like cooking, dressing and showering become difficult, we may need practical help. That help might come from a partner, family member, friend or carer, or from disability aids such as rollators, walking sticks, shower chairs and toilet frames.

Problem Solving

Pain brings many problems, and we constantly have to find ways around them. Money might be short because we’re unable to work, but we still need to eat and pay the bills. We might not be able to stand for long enough to cook a meal, but we still need to eat. We might not be able to walk around a supermarket, but we still need supplies.

Living with pain often means finding a different way to do things.

Pills, Potions & Snake Oil Cures

My goodness, if I had been given £1 for every “cure” I’ve heard about, I would be a very rich woman! The sad part is that people living with pain or a chronic illness can be desperate and vulnerable, and often fall prey to people who make dubious claims about dubious products.

Preoccupying

Pain is preoccupying. Sometimes hobbies and pastimes can help, but at other times, pain can be too overwhelming to focus on anything else.

Poor Sleep

Pain is tiring. Actually, more than tiring — it’s exhausting. But for many people, sleep doesn’t come easily because of the pain. Broken, disturbed sleep can be almost as bad as no sleep. There are medications that can help, but, as with pain medication, they can come with side effects.

Payback Pain

When we live with pain, we soon learn that everything we do comes with a cost attached. That cost is more pain, often accompanied by fatigue. That lovely gift for simply having a shower, making a meal or visiting a relative can last for a few hours, days or even weeks.

Price

Pain comes at a cost, with a high price tag — financially, physically and mentally.

As you can see, physical pain can cause so many other problems — problems with a capital P. Hopefully, this post will help people see the bigger picture of what it’s really like to live with pain.

While writing this post, I discovered many more words related to living with pain that also begin with the letter P. Since September is Pain Awareness Month, I’ll be sharing some of them on Facebook and Instagram throughout the month.

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