(Since I don’t currently feel up to composing a new blog, here is an older one I wrote a few years ago and thought you may have missed or would enjoy reading once again.)
When you face a major change in your health and life, you find yourself being reinvented and you are the inventor. Life keeps treading away and you find yourself being dragged along behind. The morning still dawns, the darkness still falls and surprise; as changed as you are, you’re still here. The following are some of the changes I have faced and indeed, still face. We each find the resources to invent ways to keep living our lives. Strangely enough, our spouses still need to eat and wear clean clothes, our dogs and cats still have daily needs and still roll in the leaves or suspicious brown stuff and our families continue to call upon us for help, love and fun. We don’t suddenly become incased in a plastic bubble. I often wish I could be; like those hamster balls, I could roll around the house but do worry about how to maneuver the stairs in one of those.
1.SHOWERING WITH THE DOG. Yes, this is true. I started by sitting on the edge of a large sunken tub with our beloved Saint Bernard several years ago. I laughingly watched my husband bathe our dear male Saint we had previously, and was determined I would train this particular Saint, which I did,when she was a pup to jump into the tub…empty of course. She was afraid of water because she fell into our swimming pool we used to have in California which leads to another sharing. That day, the sprinklers came on and startled her and she fell in. I was working in the yard planting a rosebush.It was a hot California day and she panicked. Her gorgeous chestnut brown and white fur floated for a few moments and she fainted.I had little choice but to reach in and grab her and float her to the side of the pool. Mouth to mouth was a bit out of the question.I know I have a large mouth but not one the size of a Saint Bernard.As a nurse I had never given CPR to a floating dog, especially one I couldn’t lift. I immediately knew my only choice was to give her “snout to mouth” resuscitation; it was my mouth and her snout, in case you had any doubts. It worked like magic and she immediately came out of it and thrashed to the sidewall and pulled herself out of the deep end of the pool. She tore a couple of her toenails in the process then lay in the ground cover beside the pool and glared at me. I think she thought I had pushed her in. As a follow up to this little tale or rather tail, I should add we taught her how to swim after this experience and she hated it each and every time.My husband and I would shove her off to each other as she dog paddled to the edge, got out and once again gave us that glare.
Now, these many years later I find our dogs have grown smaller and even they are too much, at 32 pounds, for me to place in and get out of the bathtub. That’s why I shower with the dog, or rather;she lets me shower with her. She can’t reach the knobs. She actually wrangles me the whole time, walking around me in an effort to make me get out.
.2.GARDENING IN THE DARK. Several years ago I wrote an article for a nursing journal about the different ways rheumatic disease had affected my life. The editor called to ask me if I really garden in the dark. I told her, “Certainly, I try to always tell the truth in my articles.” Why would anyone make up something like that? I’ve had problems with the sun and learned to adapt to those changes. When we lived in California it was often necessary due to the heat, to delay yard work until the cooler hours. We had a lovely old-fashioned iron street light on our brick patio to light the way. Herein OR, it’s more a question of precipitation. As long as you can see what you’re doing, gardening in the dark is pleasant. There is usually a cool wind here in the NW, I don’t have to slather on sunscreen and can often get more done when I’ve obtained a“second wind” after dinner. Dead heading flowers in pots is an easy task and produces so many new blooms. My deck and front porch are a source of joy for me. Joy is hard to find these days and we must grab it and hang onto it wherever we can find it. It certainly is better than lying around singing “Nobody knows the trouble I’ve seen.” Gardening is productive in a beautiful, espressive way, much like painting a picture
.3.KEEP ON KEEPING ON. Many of us, with our various challenges have had those days when we have trouble walking, sitting, bending or lifting. As you’ve heard me say so many times, I was and have been surprised by the influence physical therapy has had on my life. I think we are all born with the inherent tendency to rest when we feel badly. What if that “badly” goes on for years? Gradually, we begin to put on weight, lose muscle turgor, insult our cardiovascular system and basically, become our disease or problem. I’ve always had this vision of becoming this little pile of plasma, lying in a puddle in a corner somewhere. It just doesn’t fit my personality. It has been proven there are less falls and accidents among those who keep moving and keep their muscles in better shape. Anyone who knows me knows I am not athletic, nor have I ever been. I resisted physical therapy until the pain in my sacroiliac joints forced me to try it. I had remarkable results and have been fortunate to have physical therapists who taught me how to continue the stretching and exercises at home. They have given me diagrams and I have a book full of them to use as a reference guide. Most folks don’t know the importance of strengthening the good muscles, joints and soft tissue. The “evil force” takes over if we give in to it. Pain doesn’t matter.I know, I can hear you cringing but you often have to work through it. With PT, for me, it usually gets better and the early soreness and increase in pain decreases with time and effort.You can’t always listen to your body at moments like this. Put your brain and heart in charge and keep on. If you’re thinking, “Well, this woman doesn’t know about my pain.” I can’t blame you. Let me share with you that I have destruction of cartilage in my knees and ankles;severely enough to keep me awake at night just from the touch of the sheets.My early and worse pain has always been in my sitter. When you’re crawling into bed on all fours which also hurt, when you can’t go out to a movie or dinner due to the chairs and sitting and when you can’t poop; my dears, that is miserable. I had never heard of rectal spasms previously but let me tell you, they can make you jump up and “sing.”The other alternative is usually to get injections of steroids. These can be very helpful but they are of short duration. One also needs to remember each time the joint is invaded with a needle there is the risk of infection. I found them helpful early on in my disease as a diagnostic tool. The rheumatologist I visited at UCLA injected my sacroiliac joints with the largest, longest needle I have ever seen; and I’m a nurse. The week following that injection was the first time in three years I had any relief. It was wonderful but as I mentioned, was more diagnostic, to confirm that those joints, the largest in the human body, were indeed the source of my pain. We also need to always remember that steroids are not our friends. They are more like enemies we need. Injections and tablets are loaded with destructive side effects, and should always be taken in moderation or not at all if other meds will suffice. Physical therapists need a prescription in order for your insurance to pay and this will keep the trilogy going: your doctor, your PT and yourself.Canes, walkers, inserts in your shoes or any other devices suddenly become your friends. Those four-footed canes are great and if you have a whimsical flare, you can find aides with flowers, stripes, and even lights. If you’re innovative, put an “ooga” horn on it, also. TENS units which are electrical nerve stimulators can divert the pain. Rubs for the skin, many derived from capsaicin or peppers, from China or the USA can “burn” it away as can the icy hot approach. Just do something to make it feel better. You are allowed to grunt when moving but pitiful moaning is frowned upon. It upsets the dog. Loud moaning is encouraged if the neighbors are home because it will fill them with envy as they imagine you have a much better sex life than you actually do
.4.LOOK FOR THE SILVER LINING, NOT THE LEAD ONE. Repeat after me: “Life does not suck, life does not suck. My condition sucks, my condition sucks.” If that’s a bit rough for you then you can say, “I am mentally, physically and socially challenged but I will survive…somehow.” It also helps to throw your arm and fist up into the air, Norma Rae style. Why not? Remember, it is still your life. This is where the pedal meets the metal, the foot hits the road and your life can either be sucked away from you with the huge vacuum of adversity, or you stand up as best you can and get out your metaphorical sword. We need to arm ourselves with faith in life, indignation; some modified anger as well as approximately a ton of “true grit.”
5.YOU ARE NOT ENTITLED; YOU’RE JUST HURT. Self-pity is a strange phenomenon. It makes all of us behave in a strange, self-centered way. One day at the supermarket I saw a young woman helping her father who needed a walker get out of the car in the middle of the driveway. She was holding up traffic and displaying her dedication and concern in a somewhat rude way. I realize when we are first injured or become ill; it is an all-consuming force. We live it and breathe it. We talk about it to the point of distraction. We become shocked that our bodies would turn on us in this manner, and sometimes, we go a little “nuts.” We are fascinated with our bodies and its maladies and think they are the only wounds in the entire world. They are not. Millions of people here in the USA alone, have pain and challenges. When you include the rest of the world, well, it’s overwhelming. This is when it is time to sit down with your computer or a pad and pen and list your blessings. This will help you regain perspective. Are you in a home where there is heat? Do you have your head and household covered with a roof? Can you see or plant something beautiful? Do you have food? Do you have a beloved pet who loves you above all others in his/her world? Is there one other human being who loves you, or perhaps more than one? Have you been blessed with a talent that gives you pleasure? Life is wonderful. Don’t let your pain cause you to lose sight of that.
Enjoyed this sue and the first paragraph so fitting for me…reinventIng yourself..tried and tested there and it works
It’s the new normal as the latest saying is….I too garden in the evening I find I enjoy that better somehow..it’s a more reflective time and the light is always kinder .also your right there is always a second wind then …and the day is done and the time Is your own
Chris , a fellow night time gardener. I break out in a rash from the sun and feel rotten, that’s why I do it. Glad you enjoyed some of this. Hope your headaches are getting better. Love, Sue
I love your articles on pain. i have had chronic pain now for pretty much all my life with hip back pain from degenerative disc disease. i had back surgery years ago and also have bulging disc with osteoarthritis nerve problems. But in the last 2 months the pain has been pretty much a 9 everyday. Me and my doctor have come up with a plan to see if I can get some pain relief and help for walking and movement. Youe articles have been a blessing and open my eyes to better understaning about my life and pain. Thank you so much and have a pain free day. Charlotte,