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When taking a shower hurts

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It seems easier to think and cry in the shower. I have washed many tears down the drain in my lifetime. Lately though, showers haven’t been so freeing. This may sound weird to some of you, but much of the skin on my face, arms and legs have become so hypersensitive that even water hitting me from the shower head hurts. And when I say hurts…I mean HURTS! It feels like I’m being pelted with pin and needles.

I’ve been pointing the shower head to the side wall and filling a large cup with water to rinse the shampoo out of my hair. It makes bathing a bit more complicated, but if I don’t want to smell like a skunk after a long day, I have to change and adapt.

One thing I have noticed is that after a shower I am much more exhausted than I was before I even started. By the time it takes me to bathe, dry myself off, put on some deodorant, and get dressed, I have a hard time holding my eyes open.

If it’s morning I have to take a nap for about an hour or more. If it’s night time I need to be sure to dry my hair and finish putting on some lotion and skin moisturizer. By that time I crash in the bed for the night. I’ve been known to fall asleep curled up in my towel then I wake up with my hair dry and I look more like a drowned cat because sleep overwhelmed me. But regardless of how much sleep I may get, I still wake up exhausted.

I never really realized how much I was truly taking for granted in the past. But today, many things have become a challenge for me to complete that never did before. It’s as if each day, as I pull back the covers to get out of bed, I start my ascend to the top of Mount Everest. I don’t always make it to the top as the day comes to a close, but I press on anyway.

Multiple sclerosis is the disease that keeps on giving and taking away. But regardless, I refuse to let it limit or define me.

REMEMBER: You have this terrible, pesky disease called multiple mclerosis and it’s trying to take over your body, but you are not MS. You are an amazingly courageous person that can still love, dream, laugh, and hope for a better tomorrow.

My night of sleep… yes, I said sleep

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Emerging data suggests that extending a nightly sleep duration of people who habitually get insufficient sleep is associated with health benefits. My doctor has changed the dosage of Trazodone that I take to help me sleep at night because I told her the previous amount wasn’t helping as it did at first. Amazingly enough the higher dosage did help me get better sleep last night.

I was so deep in sleep that I had a dream a friend was over at my house. We were talking and I told her I needed to excuse myself because I had to go to the bathroom. Keep in mind I’m still asleep. In my dream I was on the toilet and attempting to empty my bowels.

That’s normally not an easy task when I’m awake even with a daily intake of stool softeners. I was using my abs to attempt to push hard… while asleep. That’s the only muscle group that works for me to empty my bowels. I even told my doctor I have washboard abs now all because of it.

Thankfully,  I woke up realizing I wasn’t on the toilet and hadn’t push hard enough to get anything out yet. I transferred to my power chair, made my way to the bathroom and barely got there in enough time to do my business without making a mess. Phew…

That was a close call. We’ll see how things go in the days ahead and if the higher dose works without any further dream issues. I sure hope it does. I really need all the rest I can get. I much prefer sleep to chronic insomnia.

Healthy sleep is important for cognitive function, emotion regulation, physical development, and a better quality of life. Considering I’m a person living with multiple sclerosis, it’s imperative to have a good developing immune system.

Sleep is incredibly effective at helping repair the day-to-day cellular injury that happens, but most people don’t get the amount of high-quality sleep needed to do so. Its impact on the nervous system works best when we’re asleep doing the vital work needed to keep our cells thriving, but you can also get tremendous benefits from other types of rest as well.

If you’ve ever found yourself feeling blissfully calm during a massage, drifting in and out of consciousness while meditating or praying, breathing slowly and rhythmically while reading a book, or pleasantly lost in thought while on a walk in nature, you’ve experienced a sense of deep rest.

The process of sweeping away and recycling old or damaged cellular material truly helps rebuild new cells and minimizes inflammation levels throughout the body. I like the thought of that. So if a medication will help me to get that rest, I’m all in for it. I’ll let you know how things go in the days to come.

Incontinence… ain’t nobody got time for that!

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Have you heard about the adult diaper spas that have opened in the UK and the USA. Yes, you read that right. It’s a place to nurture and pamper diaper lovers and enthusiasts. It actually caters to people with a psycological disorder that’s been growing among adults over 21.

Sorry, but I don’t see the fun or joy in having to wear a diaper because my bladder or bowels aren’t working correctly. Yes, I have had problems with bedwetting before… but the previous time was when I was five years old!

When I was in the hospital last year I wasn’t able to make it to the bathroom on my own and my bowels were like clockwork. I had to go every morning by 6 am but since I couldn’t get out of bed on my own I wore an adult diaper and the nurse had to clean me up because I made a mess. Two weeks of diaper changing was enough for me.

I was in the hospital to have my bladder removed. For about 7 years I had used a suprapubic catheter (SPC) for bladder incontinence. The catheter was placed in my bladder to help empty my urine but the SPC wasn’t working well for me and of all things it was painful. I had bladder stones that were causing me problems and blocking the flow. When the urologist had recommended removing my bladder entirely I was a bit nervous, but excited as well about the concept. I thought, this will make my life a bit easier to manage than it has been. I’m ready for anything that will help me out.

When I finally got home from the hospital after my bladder was removed, I was able to manage things on my own and so happy. It’s been a year and I believe it was one of the best changes for me since my MS diagnosis over 10 years ago dealing with continued incontinence troubles. I now have a pouch I wear on a stoma the doctor created for my bladder. The pouch is my makeshift bladder and sits outside of my belly area near my belly button. I replace the pouch about every 3 to 5 days but empty it as often as needed like you would a normal bladder. No more issues with trying to hold my bladder and making a beeline to the toilet.

I have to say laughter is the best medicine unless you are dealing with incontinence. I had a feeling of relief knowing that I wasn’t the only one who leaked a little when I sneezed, moved around, or coughed. I wasn’t the only one that had to change their clothes after misjudging their bladder timing.

There’s nothing wrong with finding humor in the uncomfortable aspects of life. Certainly leaking pee is something that happens to many people with multiple sclerosis and although there are certainly degrees of it where some find it obviously debilitating, others just find it annoying. There’s nothing to be ashamed of when it comes to having a badder that rebels. Humor really does help. I talk with people a lot about incontinency. I just can’t hold it in. (grin)

Even if your experience isn’t that bad like it only happens once in a while or it doesn’t disrupt your life very much, there are still reasons to address it. The good news is that it’s never too late to strengthen your pelvic floor. Ask your doctor about it or even your physical therapist about which exercises help. I wasn’t able to use those muscle but for many people doing pelvic exercises helps restore controlled use of the bladder.

Either way, just keep in mind that although there is nothing to be ashamed of when you leak pee, you are certainly far from alone. Will you make it to the bathroom in time? Depends! – they really do help. (Grin)