16 Things I Do to Feel Better on the 'Bad Days' of Neuropathic Pain
Having something like the common cold isn’t nice. It makes you feel rubbish. Your nose is blocked, your throat feels like you’ve swallowed 10 razors and your head is pounding as if you’ve gone 10 rounds with a kangaroo in a boxing ring.
But when you have a chronic illness, it’s not just these symptoms you have to deal with. It’s the elevated pain levels and symptoms of your condition that you also have to contend with. Many people find that regular illnesses, like a cough or cold, make their chronic illness so much worse. My example, for you today, is neuropathic pain.
1. Motor nerves send signals from your brain and spinal cord to the muscles within your body, allowing movement such as running and walking.
2. Sensory nerves are nerves which send messages from your skin and muscles back to your brain and spinal cord, allowing you to feel pain, temperatures of things as well as whether something is rough or smooth… the list goes on.
3. Finally, there are automatic nerves which control temperature, blood pressure, heart rate and many other functions within the human body.
And, just for good measure…
4. There is a fourth type of nerve which allows us to have reflex actions to stimuli that hurt called interneurons. Imagine these interneurons as a bridge between your sensory and motor nerves. If you touch a hot kettle to see if it’s hot, as you’ll feel pain and your instant reaction is to move your hand away from it as quickly as possible. This is thanks to your interneurons kicking in telling your motor nerves to move away from the danger as quickly as possible.
Anyway, enough of the biology lesson.
Neuropathic pain doesn’t go away. The damage to the nerves is permanent. For me, the pain is in my legs, thighs, buttocks and back. It’s always there… always. Whether I am driving, socializing at a friend’s house, wheeling around town or sitting through a lecture at university. You manage the constant pain in your own way. People may look at you and not even realize you’re in pain because you’ve almost perfected putting on a brave face and managing to hide it somehow. But when you have the flare-ups… now that’s a different story.
It’s hard to accurately describe just what it feels like to someone who hasn’t experienced neuropathic pain. I guess the best way of describing some of the sensations is that your legs feel like they’ve been set on fire, you’ve been stabbed with hundreds of pins and someone is desperately trying to push them further into your skin, you’re legs are tingling, you’ve got electric shocks coursing through your body at a ridiculously fast rate and this is all at the same time. The types of pain differ…
The pain can bring on anxiety attacks, aggression, severe mood swings, brain fog, confusion, crying, anger outbursts and even suicidal thoughts (if this is the case, please tell someone you trust).
Even since having neuropathic pain at the age of 5, I can honestly say I am still no expert on the best methods of reducing the severity of pain. Each flare-up is different, just like each day is different. But there are some things I can do to try and gain back some of the control that I feel like I’m losing when I have what I call a flare-up day:
1. Rest. Rest is very hard if you’re in so much pain. Lying in bed doesn’t work, sitting dow doesn’t work, standing up doesn’t work, walking doesn’t work. But unfortunately, I’ve found that you have to do one of these things. Find the motion that causes you the least discomfort. If you can’t sleep, don’t panic. For me, I define rest as something which lowers your heart beat and blood pressure (this is not a scientific fact… it’s my definition to make me feel better if I cannot sleep).
2. Remove restrictive clothing. If you’re at home and you’re experiencing pain in whatever area your nerve damage has occurred in, if it’s safe to do so and you are happy to, I recommend removing any clothing touching that area. I often find that if I’m experiencing pain and wearing jeans, the feel of the material and the pressure of it can make it so much worse. Take them off and put on a light dressing gown. If you can’t do this, try and put something else on like loose tracksuit bottoms.
3. Put on a comedy. Try and watch something that’ll make you laugh. If you’re in the living room, put something and actively try and listen to it. Even if you end up getting off of the chair, pacing up and down the room, moving into a random 10 second handstand and then end up lying on the floor, have something light hearted on that you can attempt to focus on. People say laughter is the best medicine… and let’s face it, you need to laugh right now otherwise you’ll probably cry.
4. Or put on some music. I think some upbeat sounds are a good choice or a soft, slow rhythm album.
5. Drink your favorite soft drink. I personally go to Hot Ribena with honey, a good cup of tea or a hot chocolate with marshmallows. If you’re unsteady, try and use a flask to drink hot drinks or a child’s cup (that might sound silly or patronizing, but you’ll thank me later).
6. Remember to eat. When we’re poorly, we sometimes forget to do the basic things. Try and eat something even if it is just plain toast.
7. Remember to take your medication. Set an alarm to remind you and please take them as instructed.
8. Call or text a friend, significant other or a family member. If you’re able to, drop a text to that friend who understands you. No, you aren’t bothering them. A while ago in a deep conversation, I said to my friend “I must really get on your nerves sometimes. All I feel I do is moan to you about one thing or another,” He told me that if that is how I felt, then my idea of friendship may not be correct because real friends are always there for you in any way they can be. He asked me to look at it from his point of view and said, “If it was the other way, you’d help me without a doubt.” Now that is true. Be honest with them. They’re your friend for a reason.
9. Talk to who you live with. Let them know what’s happening and how they could help.
10. Write down how you feel, what you’re thinking about or what you’ve literally just remembered. Writing down how you feel can help you manage your emotions and the reasons as to why you feel like you do. Come back to it when you’re feeling a bit better.
11. Scream into a pillow. It helps. I sometimes even hit it… just for good measure. For me, it releases tension, too.
12. Cancel that social arrangement. If it’s 10 p.m. on a Friday night and you’re meant to be meeting your friend at midday on Saturday, it’s OK to let them know what’s happening and that you’ll have to cancel because you need to rest and recover. You need time to recover, recuperate and get back your emotional and physical strength. Think about you. It’s not selfish.
13. If you’re immune-suppressed, like me, and you know someone isn’t very well with a possible viral illness, rearrange to meet them when they’re better. Now, this might sound unkind but think about you. Explain to them that you’ll wait until they’re a bit better… be honest. If they’re your true friend, they’ll understand the reasons why. Again, this isn’t selfish. It’s necessary.
14. Have a self -care box. This could contain your favorite moisturizer, that fragrant hand cream you fell in love it, that yummy chocolate bar, the soft and snuggly blanket, a hilarious DVD, delicious hot chocolate sachets, a funny photo, a stress ball, boosting vitamins, a joke book… anything you want in there, put in. It’s your go-to box when you need to look after yourself. Just remember to top it up regularly.
15. Try and wash. Brush your teeth, wash your face and, if you can manage it, have a shower, too (depending on the location of your pain). Brushing your teeth and washing your face may make you feel better but if you can’t manage that today, try not to worry.
16. Try and keep a journal. Write about what happened that day, how you felt, why you think you felt like that, what positive things happened during the day, what you’d like to improve on and how you’ll do it.
I’m taking part in the My Mighty Month challenge. It’s day five and I’m loving it… and I’m writing and thinking about positive things I’ve not really considered before. It’s good fun and quite therapeutic. We all have bad days whether we have a chronic illness or not. It does happen.
These suggestions are not anything like a “miracle” but maybe, just maybe, they’ll help someone you’ll out one day.
I’m not at all saying anything along the lines of,“My chronic illness is worse than yours…” because it’s not. We all experience pain and sadness with our conditions sometimes and that’s OK. We will never fully understand what each other has to deal with in life because you aren’t them, even if they’ve got the same condition as you. You can’t teleport yourself inside their head to get their exact perspective of things but you can be empathetic towards them. Let them know you aren’t judging them. You can’t always put on a brave face but what you can do is remember that taking time out for yourself is not selfish, it’s healthy.
Recovering and time alone isn’t selfish, it’s necessary.
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