Living with an Invisible Illness can be hard. We look fine from the outside, but we are actually in extreme pain. Sometimes other people don't understand what is going on in our lives. So I think it is important to let them know. What things in life have become difficult or impossible for you? Maybe we can share these struggles and let others know what like is like as an IN sufferer.
It also means that we can share our experiences with each other, because you really are not alone. You aren't, so take heart! We have a growing community on Facebook who are there to care, support, encourage, and provide an outlet for any frustrations you may have. We are all sufferers so are in the same boat. I'll post the link to these sites at the bottom of this Blogpost :)
Today I want to talk about a menial task that we all have to do: Showering. What does a shower feel like for an IN sufferer? I guess most people would think it was the same as a non IN sufferer. Right?…Wrong!
I love showers. I love them a whole lot less now that I have IN. My nerve damage starts at my sternum and goes over my breast, onto my left underarm and side, and onto my back until my spine. It extends over 6 ribs and is about 9 '"hands" worth of area.
I have bad hypersensitivity over this whole area. What does that mean? That means that I feel in a permanent state of pins and needles. Not just that, but touch can be felt in a 'wrong' way. Since we are talking about showers I will talk through my experience concerning this. When we have a shower the first job is to take our clothes off to wear a towel. If the clothes or towel rub or scrape along my skin I feel this as pain: usually scratchy, or burning. If the room is cold when I take off my clothes, the cold air is torturous. It really hurts and can feel like ice. Have you ever had toothache and drank iced water? Well, it feels like that! Jarring!
So once I have quickly got into the shower, everything should be fine and dandy? Nope, unfortunately not. It always surprises me when I have a shower how different the water feels on my 'good' side and my 'bad' side. That is something I probably won't be able to put into words. Maybe if you have ever had a dead leg (I had tons as a child thanks to having a big brother! Ha), and the feeling is just starting to come back. It kind of feels like that weird painful feeling you get before you can feel your leg again. Unfortunately for an IN sufferer that feeling never comes back, so take a minute to imagine being "stuck" at that midway point. Not a nice thought is it?
Ok, so my 'good' side of my torso is having a lovely time. The water is hot, it feels good. Ah, lovely! Meanwhile, my other 'bad' side is playing up. Water trickles down my back: PAIN, PAIN, PAIN! The cold air in the room blows past: PAIN, PAIN, PAIN. Ah, Jeez! Give us a break to enjoy this! 'Good' side is happy as Larry.
Well, this would be the time to make myself clean, right? I use a soft puff. Feels like sandpaper on my 'bad' side. But I have to wash, so I grit my teeth and get on with it. I try not to think about how it feels. I tend to do my 'bad' side first and get that out of the way. A bit like ripping of a plaster as quickly as possible! Then I can concentrate on my 'good' side. The cruelest thing about IN and nerve pain in general, is that it doesn't always strike you at the moment. You can feel the pain minutes or hours later. I can have a shower and then have the worst pain a few hours later.
Well, at least I'm clean right? What next? Oh, s**t I need to shave my armpits! :( This is my least favourite job. The nerve damage on my armpit is one of the worst areas. It is an incredibly sensitive area as it is one of the places on the human body with the most nerve endings. I have to laugh, as most non IN sufferers are probably reading this, going "It really cannot be this bad? It's just a bl***y shower!" Well, sorry, but it is. Shaving my armpit is like taking a scalpel and purposely cutting slits into it. That's a nice picture to have in your head, isn't it? Sorry, but it's true. We then go through the same ordeal getting dry and putting our clothes back on again. Towels feel very harsh on the skin. If the room is warm, I usually dry naturally, If not I quickly get it over with ;)
All of these things are invisible. But they are true. Nerves are complex creatures. I see them as creatures now. Little evil creatures who hurt and torture. I am currently in the position of knowing that I will have this condition for the rest of my life, and I am going to have to learn to become friends with the little creatures! Take hope as there are little things that can be done!
My Pain Consultant and Physiotherapist encouraged me to try desensitising techniques to help with this surface pain and hypersensitivity. This is hard to do, because our brains tell us it hurts, so we don't want to do it. But, be strong! It does help over time. You just have to persevere. I have noticed this help me. I have more to do, so join me in this technique.
So, what you do is have a collection of things ranging from really soft to really rough. This is a technique that you can't rush, so take your time.
1. Starting with the softest item in your collection rub it on the hypersensitive areas. Try and do it for a minute. If it is unbearable do it for less time, but try and do it every day. You should notice after days or weeks this doesn't feel so bad. You also need to change how you touch the skin. Light touch tends to be worse, so start firm and work your way up to light touch.
2. Try a slightly rougher item from your collection and do the same. Don't rush, and stop if the pain is too much. BUT KEEP DOING IT A LITTLE EVERY DAY!! I went through stages of going "I can't handle this anymore!, but you need to keep doing it.
3. Keep working you way up with how long you use an item for, the pressure you use, and how rough the item is. Like I said this is not something that is going to help straight away. This is a technique that will take a long time. I am still doing it. I haven't made it to the roughest item (scouring pad) yet, but one day!
Ideas for items to use: 1=smooth 10=rough. But try to think of your own, as this is about what you can't handle. Work it specifically to you :)
1. Piece of soft fabric, such as silk
2. Piece of soft fabric, such as flannel.
3. Plastic bottle.
4. Your Hand.
5. Your nails (make sure they aren't sharp)
6. Cotton wool.
7. Wool.
8. Hairbrush.
9. Towel.
10. Scouring Pad.
I hope this has enlightened some of you who weren't in the know, and has comforted people in the same boat as me. I know if feels like a mountain, but like i said there are people here who care and know how all of this feels.
Here are the Links you need:
FACEBOOK Page run by Myself and Stacey:
CLOSED FACEBOOK Group run by Jennifer:
CLOSED FACEBOOK Group Australia run by Jodie:
