This is more of a life hack for anybody with any chronic illness. Do more when you can. On the days I’m feeling upbeat, energetic, and generally well- I try to do much more to compensate for the days when I really can’t do anything at all.
That includes cooking extra meals to be frozen and used at a later date. Extra cleaning no matter what that may be. Extra writing, and any other general extra tasks.
This may sound really simplistic and like General common sense. However, when you have a chronic illness we can be tempted to slack on our feeling good days. When you’re feeling good sometimes all you want to do is enjoy it.
Well some days that may be okay, when you have a family you just can’t. So on days like that I promised myself I will do everything I can and that way when there are days I can’t do anything I don’t feel quite as bad about myself. It’s kind of like a self-esteem booster.
Next to fatigue, this PD symptom really stinks. The best way that I can describe it is creepy-crawly. It’s almost as if you sat down on an ant hill. Until today, I honestly thought it had something to do with allergies or something similar.
I went to the PD forum on APA.org as I often do and looked it up. It even has a funky name. ‘Formication’. Those of us in the forum made jokes about how it’s one letter off from ‘fornication’. Two ENTIRELY different definitions! At least we can laugh about it, right? It seemed that most of us with young onset PD have the most trouble with it.
Being that I never expected it to be related to PD, I’ve tried everything- new bath items, moisturizers, pills- you name it. Apparently, Cetaphil is the go to in the group for moisturizing. Regardless, my back, arms, and legs have been in a constant state of ‘itchy’ for weeks. It’s quite unnerving.
No one wants to be out in public looking for a wall corner to scratch their back on! Plus, the hubs is tired of me saying, ‘Can you scratch my back? I can’t reach this spot.’
I really do try not to blame everything that occurs in my messed up body to PD. I try not to be a complainer. But, this symptom is simply awful. So, I will offer it up in prayer and continue to search for remedies. I do stay well hydrated and don’t take overly hot showers. The forum is awesome for looking up new, obscure symptoms. I’m jealous that many of the folks there have really good neurologists. Mine isn’t great, but he’s the only one in close proximity.
I will try the Cetaphil and see if it helps.
I should’ve known when I tried, unsuccessfully, to sleep last night, that it was going to be a rough day. Monday stunk, too. Nothing went right. These are the types of weeks that cause folks with chronic illnesses to fall into depression. I can see how it easily happens.
I’m grateful that there is a super quick, zero fuss dinner in the freezer ready to go. With the amount of discomfort I’m in, I don’t see how I’d have concentrated on meal prep. It’s been raining on & off for several days. Today’s radar shows possibly heavy storms with or without hail. Yippee. If you are a chronic pain sufferer, you know what that means for you.
On Friday, I’d tried ordering a delivery from Giant Eagle. I’d never done that before. They have a Curbside pick up that’s awesome, but, being so rural, I doubted that they’d come here. Regardless, I placed the order & was stunned that a wonderful young lady delivered it. At least that was a bright spot today. Well, that and the fact that the dog has been an angel so far.
My youngest son is here with me and always willing to help, but, I have zero motivation to even try. He has an event tonight for local youth &, as I watch the clock click away, I know I’ll have to drive within a few hours. So, I’m cutting myself some slack, trying not to look around at the housework that needs done. I’ll do my best & that will have to be good enough for today. Holding out hope that tomorrow will be better, I’ll have to put off that which isn’t necessary.
At least everyone has clean clothes & there will be dinner.
I hate to do linens. It’s just one of those little things in life that irks the snot out of me. When you have any sort of disability, from Parkinson’s to arthritis, housework can become ten times harder. I also hate asking for help. I don’t want to take advantage of my disability nor do I want to rely on others to do things for me (If I can help it, that is).
So, changing bed linens can be exasperating for me. My main complaint is the fitted sheet. Grrr! I could never seem to hook it properly or figure out which part was the top/bottom. Being short doesn’t help either. I have to be a contortionist to work out the sides! So, as I sat in the middle of the bed, frustrated and ready to cry, I decided to come up with a way to remember which side was up and such.
Trying to use my anger constructively, I spied a bottle of nail polish on a bedside table. AHA! After having figured out for 100% certain that the sheet was on properly, I marked the top, left hand corner with a slash of nail polish, underneath the elastic. The slash isn’t so big that one could see it if they weren’t looking for it.
It took about 20 minutes off my time. It was an easy fix to a big issue and made this aspect of housework a little easier.
I’ll be honest. There was a time here recently that I was giving up. My body wasn’t cooperating. My mind was following its lead. I was depressed and fed up. Nothing was making me happy. The things I wanted to do I couldn’t. I certainly didn’t want to do nothing. I started letting my mind wander to all the things I have never accomplished. Basically, I had a full-on pity party.
Then, I got a text from my mom, showing me an embroidery piece she’d done. Then, another. Mom, with her more advanced Parkinson’s was sewing! It wasn’t like I forced myself to tell her it was nice. It WAS nice. She did a great job. I got me thinking.
When my husband & son decided to pop into Hobby Lobby, I went to. I went up and down aisles. Shaking my head and doubting myself, I ended up in the painting aisle. Now, I am not artistic. I’m not even kind of crafty. But, they had this guided painting kit. It was on sale for under $10 so I thought, ok. I’m going to try.
I brought it home and realized that the instructions were daunting. But, 2 weeks later, I had finished an adorable likeness of 2 puppies. My husband and son, though still skeptical, told me it wasn’t half bad. Ok, I’ll take it.
The next time I bought a kit, I went a level higher to challenge myself a little more. Now, I’ve almost finished that one and have set a long-term goal of painting a picture for my sister’s new house.
I noticed some other changes too. I have been filling idle time with painting. I also pray while I’m painting and just enjoy talking, inwardly to the Lord. I also haven’t dropped anything in several weeks. I was usually good for 2-3 cups a day, etc. No more dropping. Less type-o’s too.
I’m grateful that the Lord found me a hobby and I am grateful to my mom for pushing through.
Receiving a diagnosis for a disease is a whole lot different from having a doctor tell you that you have strep throat or a sinus infection. With those, an antibiotic has you feeling better within a few day. No, a diagnosis leaves you with that feeling in your stomach (like you just ate too many pancakes). Your mind whirls and you feel flushed. Then, the gears of your brain start immediately switching to combat mode. How can I get out of this? What do I do?
While every diagnosis is uncomfortable, the worst, to me, is receiving a diagnosis of a disease that A.) has no cure and B.) is progressive. For awhile now, I have lived with the knowledge, albeit in the back of my head, that I was diagnosed with Parkinson’s. Because my visible tremors aren’t that bad, I often forgot I was dealing with it at all.
Most days, when pesky symptoms popped up, I blew it off as something entirely unrelated. That all ended yesterday. For the last 2 weeks, I have gotten very little sleep. On average, I’ve been getting 2 to 2-1/2 hours nightly. I sucked it up and plowed through. I pushed myself daily, refusing to nap or even sit. Instead of sleeping, I was constructive, doing things that wouldn’t wake the family or reading up to 3 books a night. The reason for my restless nights was easily explained, I thought. Each night, an hour after I fell asleep, I was awaken by full body, muscle spasms that not only constricted my body, but hurt beyond belief. One night, I even begged God to either manifest a healing in me or take me home. Home as in Heaven. I couldn’t take the pain. I’m not even embarrassed to admit it!
Buster was my rock through it all. When I broke down crying, he must have thought some ‘thing’ was hurting me. He ran literal circles around my body as I lay on the floor. Growling and barking at invisible force that was hurting his mommy, he, too, spent the last couple weeks without sleep. I so love him. But, this isn’t something Buster can chase away. No, it was time to admit that I needed serious help.
I should add that my doctor ordered a battery of tests back in January. I have found every reasonable excuse to not get the tests done. Then, I began to rationalize that some magical blood test held the cypher to my pain. Of course, they didn’t. But, on Thursday of this past week, I got the tests done. Having a lab in her office building allows my doc to get results fast- usually the same day. But, again, I procrastinated until yesterday. I called and was told that yes, she had the results and I needed to speak to her.
Initially, all was good. She called right away. My A1C has dropped to a non-diabetic level. Sweet! My cholesterol was great. Awesome! Then, she asked as she always does, how I felt. I took a deep breath and told her the whole ugly truth. Being that she has a heart of gold, she didn’t say ‘I told you so’ or ‘Duh’ or any thing even close. She simply said, ‘Are you ready for some help?’. Yes, yes I am.
She knew right away that everything I am feeling is PD-related. So, we had to take a step I hadn’t been ready for at this point. I am going to start taking meds specifically for my disease. Am I happy about it? No, no I’m not. Am I scared? Yes, yes I am. Mostly because I know that once you begin a dopamine regime, you’re stuck with it. There’s no turning back. No second thoughts. My body doesn’t do it’s job in the dopamine arena. So, now, it’s official and real to me.
I had to tell my husband, who didn’t take it well. I know he’s worried about the future. So am I. But, the sun still rose this morning. God is still on the throne. He can still manifest a miraculous healing in me. Even if I have to wait for complete healing until He calls me home, I’m holding on to that promise. I will have my weepy days and my pity parties. But, I will take one day at a time.
It always amazes me what society deems acceptable for one human to say to another. At what point in our world did someone decide that ‘fat’ was an awful thing to be?