Being with Lene - Pain

I’ve talked about the most obvious part of Lene’s disability - her wheelchair. Now I want to talk about something that isn’t obvious at all.

Being with Lene means being with her chronic pain. A combination of Rheumatoid Arthritis since she was a young child, the accumulated damage it has done to her body, various injuries, and fibromyalgia all contribute. Add aches and pains and the occasional migraine and it’s a painful mix. Pain is part of Lene’s life, and therefore part of mine as well. Let’s call it pain by proxy.

Being with someone who can be in a lot of pain is hard to deal with. I don’t want to ignore her pain or become numb to its presence. On the other hand watching my beloved hurt is hard. Granted it’s easier to be the observer than the one having the pain but it’s still hard. The grunts and groans, the sighs and intakes of breath, the careful movements and the cringing are something I wouldn’t wish on my worst enemy let alone on Lene.

Her pain has a huge impact on her life. Most obviously it hurts. In all kinds of ways. There can be sharp excruciating pain, a high grade omnipresent and overwhelming pain, or a low grade pain that lingers for a long time and won’t go away. In her case there are the aches and pains due to the damage done by decades of rheumatoid arthritis as well. From my point of view it can seem overwhelming.

Pain takes away her energy - leaving her weak and exhausted. Pain takes up mental space and adds layers of brain fog. She isn’t as on the ball and quick witted when the pain is really bad. It saps her mental focus and energy as well as draining her physically. If you know of someone living with chronic pain - you’ll understand how it wears a person down.

Of course Lene has learned to cope out of sheer necessity. From medication to ice packs, by slowing down and not making things worse, to any number of other tools and techniques she’s collected over the years. Lene’s first book on Living Your Life with Rheumatoid Arthritis has a large section on pain and pain management. Much of which applies to chronic illnesses other than RA. Pain management is pain management no matter what the cause of the pain is.

The most important thing I’ve learned about Lene’s pain - is simply to always acknowledge it. It’s real. She hurts. It’s not “all in her head”. She’s not trying to get sympathy and she’s not faking it. As her partner I get to see her when her guard is down, when she has no reason to hide her pain or try to pretend it isn’t there. She’s not powering through it so I won’t worry. I get to see all of her - without filters.

I won’t dismiss her pain or that she is hurting. I won’t make light of it. Okay - I may make light of her wondering why she’s hurting when she’s done way too much for way too long and is amazed it’s coming back to haunt her. We may laugh and joke about it together as a coping mechanism - but that’s different. I won’t tell her to get over it, or grin and bear it, or just ignore it. Not only are those approaches not going to help - they aren’t fair. Her pain is due to her chronic illness, the damage the illness has done to her body, and not as a result of her actions. Blaming her doesn’t help at all.

While sympathy, empathy, and understanding may not make the pain go away - being insensitive and uncaring can only make it worse.

The second most important thing I’ve learned? Not blaming her for what happens because of her pain. Let me explain. There have been times when we’ve had to abandon or change plans. We were scheduled to go to a concert or an event, or we had plans to go out and shop or take pictures - but had to cancel or change plans because of Lene’s pain levels. She wasn’t up to going to the concert. She couldn’t go all the way to where we wanted to take pictures. We’ve cancelled plans many times. Sometimes we cut back our plans. Other times we have ended up staying indoors and not going out at all.

This isn’t her fault. She didn’t make me (or us) miss that concert or event. She wasn’t responsible for us being unable to go out to dinner. She didn’t ruin anything. The pain got in the way and the only way to not make things much worse was not to go to the concert or not to go out to dinner. Whatever I do - I will remember this and never blame her for changes in our plans. It isn’t her fault. Blaming her isn’t fair to her, it isn’t fair to me, and it certainly isn’t fair to us as a couple. This is something to live with and deal with. Not something to ignore and dismiss.

Not all our plans for outings and adventures will happen. We may miss things because Lene just can’t do them at the moment. That’s okay. We’ll reschedule when possible. We’ll find something else less intense. Even if it is sitting around and taking it easy. Whatever happens and whatever we do - we’re still going to be doing it together. That’s the important thing.

There’s a stereotype about men in relationships always wanting to solve whatever problem their partner has. We supposedly always reach for solutions even when all our partner’s want is to talk and rant and complain.

When it comes to Lene’s pain - I can’t solve the problem. Not completely. There are ways I can help her deal with the pain though.

I can distract her from the pain. I can get us talking on a topic she’s passionate about. Changing her focus from the ever present pain to something else. I’m not ignoring that she’s in pain - I’m just keeping her mind busy on other things for a while. Distraction is a valid tactic.

I can just listen to her complain about the pain. About what part of her body is acting up and what type of pain she has. About how tired she is of all this shit and can I find her a replacement body anytime soon? I make no promises on that one. Just letting her talk it out can be a big help.

I can physically help. I can drag her away from work and take her outside to bask in the sun. Just putting my hand on her aching shoulder can help a great deal. Touch is wonderfully comforting. The pain is lessened if there is something nice to feel instead of just those things that aren’t nice to feel.

I can help her figure out why she’s hurting so much - and help her avoid ending up in this situation again. When I first met her she would work so hard and drive herself so hard she’s end up having to spend days or weeks recuperating. Talking it slow and not doing much so she could recover. Over the years she’s gotten better at not driving herself too hard or for too long. She recovers much more quickly because she aware of when she’s overdoing it. We’ve worked this out over the years. It can be slow to change old habits and to learn new ones.

I do keep in mind that Lene is her own person. She’s fiercely independent and strong minded. Telling her she has to stop because she’s doing too much and is already wrecking herself is rude and will likely get her hackles up. At which point she’ll dig in and keep on doing what she’s doing. Did I mention Lene doesn’t like to be told what to do? She doesn’t like it at all. She dislikes it almost as much as being told what she can’t do. I’ve learned how to get through to her without making things worse. We’ve taught each other how to communicate in these situations.

Which brings me to the biggest way I end up helping. By being told what help she needs. I can offer to help and I can try and help - but Lene is also responsible for asking for help when she wants it. We both have learned to communicate with each other about pain.

Let me give you an example. Throughout her day Lene drinks water. The medications can be dehydrating and drinking water helps her upset stomach. By drinking water I mean mugs of hot water with a slice of lemon. To make herself a cup of hot water she has to:

• Take the mug to the sink and pour out the leftover from the last cup. Which includes:
• Bending over to throw the old slice of lemon into the kitchen garbage. Then she:
• Turns on the kitchen faucet using a stick so she can rinse and fill the mug. Putting the mug down she:
• Uses the stick to turn off the water and then:
• Jams the stick against the door button on the microwave to open the door. Putting down the stick she:
• Puts the mug in the microwave and uses her shoulder to slam the door closed. Then she picks of the stick to:
• Press the buttons and start the microwave. At which point she usually leans over the counter waiting for the microwave to finish. She’s been known to murmur “hurry up already”. Grabbing the stick she:
• Jams it against the door button to open the microwave. She:
• Takes out the hot mug and puts in a slice of lemon. She:
• uses her shoulder to slam the door closed so she can finally drive off with another mug of water.

I belabour the point for a reason. Picture all of that happening to a chorus of grunts and groans along with obvious signs of aches and pains. Where she hurts to move around and do all those maneuvers. Put yourself in my shoes - sitting on the couch watching this. You’d do what I did… offer to make her a cup of hot water.

To which, most of the time, she would say “no”. And each time she started to go through that routine again I’d offer to do it for her. Especially when she was having a bad day and hurting more than usual.

Finally, after who knows how many times of offering to help with her mugs of water, she turned to me and said:

Yes I hurt. Yes this hurts. Sometimes though moving around like this is good for me. I can stretch my muscles and move my joints. It hurts - but it’s a good hurt. Call it a range of motion exercise.

From now on if I need your help I’ll ask for it. Otherwise you can assume I want to do it myself. You don’t have to offer to help all the time. I’ll let you know when I need your help. Okay?

I still offer to help her out all the time, not just to make her a cup of water. I also know that if I don’t offer she won’t take it personally. She knows I’m not ignoring her. She’s responsible for letting me know when she’s okay doing whatever it is and when she wants or needs my help.

Do others have the same sort of agreement? I don’t know. All I know is that Lene will not feel bad about asking for my help and I won’t feel bad about not always offering to help. Figuring out our particular style of communication has been extremely important.

None of this makes the pain go away completely. None of it makes it easy to be with someone who is in pain. Pain is part of Lene’s life. Seeing her in pain is part of being with Lene. Together we’ve worked out how to make pain less a part of both our lives.