Aftermath of Movement

“Move it, or lose it” is a saying that many of us with RSD live with. It is important no matter how much pain we are in to keep moving. How do you explain to the the non-RSD person the pain of movement or worse, the pain that follows most any activity?  For myself, even mundane movement around the house can cause flare ups later. Spending two days up and around with full body movement for over four hours? Insanity. It might not hurt as bad while I am moving, the waves of pain come later. I was out for Thanksgiving on Thursday, just the hour and half drive and sitting in a restaurant, and then the drive back was a killer – but 3 hours of walking and window shopping a day later in cold tempatures? A killer. Let me walk a non RSd person through my hell.

The Outing.

Since the colder tempatures outside, I am less active. The cold affects people with RSD just like it would to a person with arthritis, only arthritis more well known but the pain levels of RSD much higher.Anyways, my hubby was restless and wanted to go do something. I was feeling pretty good so agreed that we needed to get out and do something together. I spend far too much time in the house. Money is tight, so our adventures are cost wise pretty cheap. We both wanted to go to the art museum in Milwaukee, sadly the cost of gas, parking and admission was over budget – plus we’d probably want to stop out and eat.  We decided to head to a little town and do some window shopping. The temperatures in the upper 30′s – low 40′s, I bundled myself up, wearing my special socks under my jeans. We headed for a town called West Bend, I remembered they had a delightful little downtown area. The entire downtown main street was about 8 blocks – both sides. This would be a great undertaking for me without my wheelchair. For those new readers, I have trouble walking a block – my legs shake most days and I fall. It was an odd RSd day, a good one – I felt really good and was walking without a cane – off we go!  I was so excited to be out of the house and spending time with my husband, we are best of pals and or time out together is so rare now.

We hit the streets of West Bend like two young bright eyed kids. We strolled the downtown area and stopped in at several shops. I was so happy to be moving around relatively pain free and without a cane.  All in all we spent about two hours strolling around the shops, I was starting to feel a little sore. Mike was hungry so we stopped and got something to eat. As usual Mike ate half my meal as well.  Almost four years of marriage I’ve learned to order a bigger portion so I get some too. HA HA.  After a lunch, we stopped at PetCo to visit the meow meow kitties.  Mike wants another cat, I am refusing to give in. So we met Rascal a one year old male tabby. I made Mike put him back!  After Petco we skipped over to Goodwill, I was still moving pretty good, my legs starting to get a little wobbley. I love Goodwill, I found a real nice sweater and a pair of jeans for eight bucks.  As we left Goodwill, my legs buckled – I had pushed too much, time to head back home. I was in awful pain.

The Aftermath – A peek into pain

This is the part many do not understand about RSD, the after math of movement to the person infected with this cruel disease. On Thursday (Thanksgiving) I had been up and moving around for about 3 hours, plus driving time. We stopped by my sister and I had commented that I was starting to get sore. She said” You’re just sitting, how can you be sore?” For me, sitting on a chair counts as being up and around. My hips and lower back are greatly affected by the RSD, laying flat is the only relief I get and that is minimal and only gets better if I take pain medications.  Anyway…The after math of Saturdays movement now setting in, I could not wait to get home and take some medication.

We get home and I immediately change into comfy clothes and take my pain medication. By this time I’d rate the pain at a 10+, I waited too long to take  pain medication. An hour later and I am fighting tears. My entire body aches, these are not aches from lack of movement either. My body feels like I was hit by a truck! My bones feel like they are going to explode in my body. The muscles feel like someone is in there twisting them like a washcloth. Come on pain pill- work. The pain not just in legs, I wrenched in full body pain.

About an hour and half after taking my pain pill, I’m still at a high level of pain. I’m now in tears, it’s so bad and not easing. I decide to take a 1/2 more of pain pill, Im staying within dosage levels. The thing about pain medications? they are meant to manage pain and keep it at bay, not solve increased pain levels. Forty five minutes later and the pain in becoming tolerable but I’m a stoned zombie. The tears now come hard as I lay on my bed alone.  I want to be alone, I can’t stand my family seeing me all drugged up. Pain medications tend to have odd effects with me, how can I explain? Even over the counter medications like Nyquil make me loopy. I’ve now just ingested 8mg’s of Dilaudid , a narcotic that is 3-4 times stronger then morphine. I’m in a haze, the narcotic causes an almost euphoric feeling, the pain now down to a 2-3. The aftermath is now me crying because I am now sat having to be stoned after a time I had enjoyed. This is my life now. I’m crying because I so enjoyed the time out with my husband. I’m trying to be brave and endure the pain and keep it silent, I can’t. I’m balling, big tears floating down my cheeks. Some many wonder why crying if the pain is releived or at a lower level? It’s a question of being lucid to ones own level. For myself, I do not feel very lucid on the pain medications.  It’s really hard to explain my emotions. I feel like the entire day was a waste because now I’m drugged up, I just do not like being around people when I’m on the pain medication – including my husband, I just do not like being seen that way.  My price for spending an enjoyable afternoon with my husband doing something that anyperson takes fro granted? I’m now alone in room dealing with the fact that I am in pain and having to take pain medication to deal with the pain. For some this maybe n big deal – C’mon Kathy, you have a chronic pain condition, go easy on yourself? I guess I feel like the whole afternoon was a lie and the other part? My husband having to see me suffer, this disease affects him too. He’s now feeling bad like he pushed me too far and worse anytime we do anything this is the end result, a wife smacked out on drugs. He spend the rest of night in the living room, I in the bedroom. He checked in on me periodically but like I said I like to be left alone when I drugged up. Why? because I am not myself. I often slur, can’t keep a straight thought, I mumble, I groan, I ramble, I forget what I’m talkin about and stop mid sentence. It’s like being sat next to the town drunk who’s telling you the same story for the third time. Cruel disease this RSD.

Moving Forward

When a person with RSD forces themselves to get out and move, we generally pay for it dearly later.  It’s a tricky method of finding the right balance of movement , It’s even more an obstacle to get those around us to understand.  One day I feel like I could leap a tall building, the next day I struggle getting to the bathroom timely.  It’s not that we do not want to move and are lazy, many times the person with RSD has to evaluate themselves on a daily, even an hourly basis.  A person on an RSd support group channel stated “Life with RSD  is like a balancing act on a sharp knife” or something close to that was stated. I could not agree more.

I’m doing a little better today, still sore and achey. I’m using my cane even for just around the house, my legs are very wobbley and giving. I’m thankful today for my ability to rise and walk the distance I did yesterday without a cane. I am hopeful for more days like that. It’s acceptance thought that all days will not be like yesterday and the aftermath is just something I have to suck up too. Movement is so very important to the person with RSD, the pain last night was worth it. The bad pain has passed, today is just more aftermath of excessive movement. I pretty much have done nothing today beyond cook some rice and chicken, it was hard to stand for that!

What did I learn about over doing it? To be better prepared next time. To use more caution and listen to my body at first signs of being sore. To learn to accept my cane and be prepared to bring my wheelchair for long walking trips. I’ve yet to bring my wheelchair out of the house. I intentionally avoid any encounters that I might need it at. For instance, this holiday weekend some of my high school classmates were in town and there was a get together at a small local bar. I did not go again. My legs are worse after 3 pm, I feared not having a place to sit at the bar on a Friday night and needing myu wheelchair. Im not ready for people to see me that way, especially people I know. I guess that is the real demon I need to conquer – accepting myself , perhaps that is why I over did it Saturday, denial.

Off I go back to lay down -  still cannot sit up for too long.

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