The Trouble with Spoonies and Fun

Prepping for a Concert and the Flare to follow

Every Spoonie out there understands the consequences of doing too much. I think most of us try to balance work and home and any fun we do so it won’t stress out our body and we won’t have a flare. But sometimes flares are unavoidable. There are things in life we have to do, even fun things that we want to do and we weigh the options and go for it despite the likelihood of a flare. For instance, a recent early Anniversary gift from my hubby that I have known about for months: Evanescence and Lindsey Stirling tickets. The concert was this past Saturday and I’m still recovering. It was well worth it the seats were amazing and I enjoyed every minute of it, but the venue was difficult for me though it is a beautiful place. It is outdoors, the grounds are sprawling and unfortunately, I found their accessibility lacking. Handicap parking was first-come-first-serve and even our very early arrival, several hours before the first set, we still found nothing. The venue is out-doors and from the drop-off point to the actual pavilion where the concert takes place was quite a walk for me with my cane. It is also August, in Texas, which means it feels like you are just a few inches from the surface of the sun and I fall into a category of people whose body is not agreeable to the warm temperatures. I am not sure if I am in the minority, especially when you are talking about the heat here in Texas, which I think could offend even the most tropical of people but, I seem to fare better in cooler weather. I think I must have sweat about a gallon, no joke, even after 8pm when it was dark, it was still around 85 ̊. Even after living here almost 23 years, the heat just takes your breath away. You don’t get used to it, you just tolerate it and are grateful that most of the time you are in a/c. After the concert there was some difficulty in picking me up because I had wandered too far in migrating with the throngs of people leaving and I ended up having to walk around quite a bit in meeting up with the hubby, who ended up having to park in BFE. This post is a combination of two things that occurred to me afterwards: Things you can do to ease a flare the day after and, how you can prepare for an event (like a concert) better than I did.  I don’t go out much, in truth, so I suppose that is why I’m pretty shoddy at preparing. But where I fail, you, my friend will reap the benefit of hindsight!

5 Ways to Prep Before a Concert

1.)   The Venue: Do your homework! You can’t determine where a concert will be held but you can recon the venue so when you show up it’s not all a big -inconvenient- surprise.

2.)   Parking: Make sure you know where the disability parking is if you are able to use it. If you don’t have a placard or plates, try to find the most convenient place to park that day.

3.)   Call the venue: This one is the most challenging for me. I don’t like feeling like some prima-donna who needs special treatment. Don’t be like me. I mean it. I may have suffered quite needlessly all because of my own stubbornness something that may have had a solution had I called. Having a disability and needing special accommodations doesn’t make you spoiled. You are just wanting the same, reasonable access as everyone else. So, call the venue and see if they offer any services that can assist you in getting around better.

4.)   Clothing: Make sure you are comfortable for the event and season of the event, if it is outdoors. I must have changed four times before I settled on something that I felt would keep me the coolest and I am grateful I did. The black leggings that was my first choice, while comfy, would have been the death of me in the heat department. You want to enjoy yourself so don’t sacrifice comfort for style.

5.)   Ear Protection: This is huge. Typically, we always bring ear protection with us but this time we forgot and by the end of it I was not alone in my ear pain. Not to mention it triggering a migraine that luckily, I had brought meds for just in case. We use the squishy ones for the shooting range and they do not impair your hearing of the concert, just your ears. Even two days later, I am still experiencing ear pain.

I’m sure there are more ways to prep before a concert that I haven’t addressed. Please, feel free to share them with me.

5 Ways to Self-Care the Day After

1.)   Rest: This is the biggest and most important thing you can do for yourself. There is absolutely no shame in it and your body will recover faster if you take the time out for it instead of just trying to jump back into life.

2.)   Crock-Pot-Rescue: When you plan your meals for that week of, make sure to include a crock-pot dinner, or something equally easy, for the day after the concert. This is part of self-care and resting.

3.)   Netflix and Cuddle: Or Hulu, or Amazon or Crunchy Roll! It doesn’t matter, just grab your favorite cuddle bug, sprawl out and indulge in your favorite movie snack and relax. It’s amazing what cuddling can do in combination with relaxation.

4.)   Bath or shower: Grab your favorite essential oil or bubble bath and sink in. If sinking in is not an option you can still drop some essential oils into the shower and just luxuriate in the hot water and soothe muscles and psyche while inhaling the fragrant scent.

5.)   Pamper yourself: Pick that one favorite thing you never indulge in and do it. It doesn’t mean you have to go out anywhere either. Love getting your nails done? Grab your favorite color and set up a comfy spot and paint your nails. Never have time to read? Here’s your chance! Make a nest on your bed and curl up with that book you’ve been meaning to get to. Sky is the limit and remember, you don’t need to wait for a flare to do these things either. Self-care can be any day of the week.

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The Injustice of Multiple Chronic Issues

Dealing with one chronic issue is enough, but many of us struggle with two or more chronic issues. I am one of those people and it often feels overwhelming. It can also make a situation where you are already wondering, “Why me?” feel even more despairing. It can also make some people more inclined to feel as though their situation is somehow worse than the person only dealing with one or even two issues. I have seen this on many social media groups for chronic illness/pain and have watched as people from both sides, if you will, and also male and female, be reduced to this childish argument over who hurts more or who is in worse shape. I am here to tell you that we’re all in the same boat of injustice, where we are the lucky winners of chronic illness/pain for probably, a lifetime. It does absolutely no good to anyone, to argue about it.

The Snowball Effect of Chronic Illness

The majority of my life I have dealt with some chronic conditions, like asthma and bipolar, as I shared with you in my previous post, Chronic Pain Un-Filtered. However, these issues were, for the most part, well controlled and it never weighed on me the way my current situation does. In the beginning, what started out as hip and back pain seemed to snowball into this overwhelming list of issues that was accompanied by an even bigger list of medications. I remember distinctly feeling like “Why me? What did I do to deserve this?” I felt like I was a relatively good person in the grand scheme of things and actually contemplated some reasons for my ill-health as my not being Christian or having neglected myself over the years with diet and exercise. But these are no more valid reasons for why I have some of these chronic issues than it would be to say that hurricane Harvey was the result of people’s diminished belief in God or some decline in morals over the years. I am not altogether certain why I have so many chronic health issues, but I do and what is important for my future health is not to place blame on myself and something I failed to do, but try to do things which will improve my quality of life for the future.

My Chronic Illness is Worse than Yours

I’m sure when you read this you will hear how silly this is but I think some of us and me included, have felt like this at one time or another. Now to be fair, there are some chronic issues that are worse. They can inflict more pain in someone than another person or require far more hospital visits or doctor visits, but even pain is relative and while one person may feel pain on a 3 level, another person might feel the same as a 7 level. Which then only leaves the argument of doctors and hospital visits, and because there are multiple chronic issues going on, you have the potential for all sorts of problems. Medication interactions that might be bad, flares that can stress on the body of a patient with multiple chronic illnesses and which might wreak havoc with other issues. Ultimately, this argument is moot. Even though we might share one, two or three chronic conditions, we are not the same. Which is why one treatment may work for your friend who has the same chronic illness but may not work on you. I think it is imperative for us to stick together. In solidarity, we have a better chance at bringing to light chronic issues and perhaps encouraging even more research. In solidarity on social media and groups for people with chronic issues, we can show one another support and raise each other’s spirits rather than breaking them down.

Moving Beyond the Personal Injustice

I want to stress here that we are all human. There are going to be days when we feel angry and sad and betrayed by our bodies. There is no getting around that and I am not here on some high horse to say that I never feel like it is unfair that I have multiple chronic issues. I probably feel that way at least once a week and maybe more when it gets really bad. But the important thing is to recognize it and give you reasons to get past it. No one ever said life was easy. No one ever said it was going to be sun-shine and roses all the time. I think the very nature of being human is very, very difficult and we are always going to find ourselves in difficult situations where our spirit and our ability to be compassionate are put to the test. I think what is important is that we strive to keep going even when we feel diminished and defeated and that we try to extend our compassion and understanding to those going through similar things. I also feel that when we do these things we feel the effects just as readily as when you give someone a hug and it makes you feel better too.

Tips and Hacks for the ‘Chronic’ Life

I try to keep things positive here. I try to leave everyone with a sense that they can do anything and everything they want to, it just may take longer or, you might have to become creative. Chronic Illness, whatever it might be you are struggling with, doesn’t take a break, doesn’t go on vacation and it doesn’t bargain with us. But life continues to tick onward and we can’t stop our lives because of chronic illness. I am hoping that some of these little hacks might help you suceed in your day to day lives so you can live it as much as possible and not feel so trapped by your illness and even your limitations.

Cooking

• Make a Menu: This takes time but it will help you in the long run. Not only will it save you money but it will save time in the grocery store wandering around and tiring yourself out when you could be getting back home. Also, this helps with my next step, cooking in batches because you can figure out what days might work best for you.

• Cook in Batches: You know yourself better than I do; is there a time when you feel better or worse? When you plan your menu, which can also be altered depending how you feel, you can figure out the days you are going to double recipes or precook some items you might need. You can pop in two chickens or even more and spend the day cooking if you feel up to it and then like magic, you have a couple pounds of roasted chicken to work with the rest of the week. If you can’t manage roasting, throw some chicken in the crock pot and cook it for 6-7 hrs and then you are done. The same with ground beef. If you know a couple of menu items need ground beef just cook it all a head of time. A lovely little hack I learned if you have hand or wrist issues like me, use your food processor to ground the meat.

• I think ground beef and chicken are the easier to cook ahead, in batches and in large quantities but you can do this with stew meat or pot roast or even a brisket.

• You will need a few kitchen helper gadgets. A food processor can help with just about every cooking need. A crock pot is essential.

• Strategic development of meal plans. I cannot say how important menu planning is, even if you can’t predict how you are going to feel, having a menu allows you to play the swap game with meals as long as you shop for or make sure you have ingredients on hand.

• Freezer meals are an excellent way to give yourself a little break. You can take them out of the freezer and defrost it a little and toss it in the crock pot. Let it go and rest or take a hot bath or whatever else you enjoy until you are ready to eat.

• Double recipes and freeze half. That way you always have something on hand for those days where you really can’t even get up and cook, all you have to do is reheat.

• Grocery shopping wipes me out. I don’t suggest you grocery shop and cook on the same day unless you have extra help in the house with you. To make grocery shopping easier, make sure you are armed with a list and have already searched out coupons if you use them. That way you are not shopping and then looking for coupons. I organize my list according to sections of the grocery store so I am not buzzing around for hours, because I move slow, and I can really go into the grocery store like a well trained soldier and just grab everything I need. If you can grocery shop in half the time, I think it’s worth it. I also try and shop for two weeks. I shop for the first week all ingredients and produce and for the second week, I shop for all the non-perishable’s I might need so when I go back to the store I am only getting fruits and veggies and things like that. It really helps.

• I would also suggest in your menu planning that you have a combination of crock pot meals/freezer meals, a meal that you double, a casserole dish that’s like dump and go, toss in the oven and a couple of easier meals for days you don’t feel as bad and then, rotate them for the next week, maybe swap out one or two for something new, but the idea is not having to go out and get a bunch of things, because you already have the majority of ingredients on hand.

• If you can, keep your gadgets that you use, like crock pot and food processor on the counter. It might not look pretty or it might clutter things up but it’s really helpful, especially if you live by yourself and may have trouble reaching down to drag out appliances.

Housework/Chores

• Bite-size pieces. Ever hear the expression “biting off more than you can chew?” Well, that is exactly what I don’t what you to do. It’s very easy to try to do everything in one day when you are feeling pretty good, but as you know, it only leads to a world of hurt later. You may say well, at least I got it all done, but it’s far kinder to your body and your mind to parcel out chores.

• There is no such thing as perfection when you struggle with chronic illness, and that is okay. Shoot for doing your best, and forgive yourself if things aren’t tidy as your mind might like.

• If you have kids, it is never too young to start doing chores and even a small child aged 3 or 4 can start to learn to pick up after themselves. It will save you a lot of irritation and grief if you can get all your kids, no matter their age to help you out.

• A light-weight vacuum cleaner is a great investment. If you have a two story house, buying a second hand one to keep up stairs would be helpful too. These are also good for quick passes in the kitchen to help tidy up the floor, or even wood flooring if the model has that setting for bare floors. You can also get a long handled dustpan, the kind they use in stores for cleaning up. It saves you from needing to bend down. Also, a bag-less vacuum to help reduce allergens and pet dander. It also makes easier and faster clean-up.

• Make your own cleaning products. It may sound like a real pain, but in the long run it helps keep you healthier by not breathing in the chemicals from manufactured products. I have done this in the past and will be picking it up again so stay tuned for some actual recipes on DIY cleaning products. I use vinegar as a base, but you can infuse them with lemon peels and orange peels to cut the vinegar scent (which is still better than bleach scent) and will leave your house smelling lovely. They are just as good, they are chemical free and cheaper than buying store bought products. Win Win.

• Go minimalist. You can use this rule: If you don’t love it, if you haven’t used it in six months, worn it in six months, give it away. Reducing clutter not only makes your life easier, it streamlines your actual space so you have to clean less and it has an effect on our psyche and makes us feel better.

• No shoes in the house and make sure to have a good floor mat. No shoes means less tracking of dirt into the home and less to clean. Floor mats mean that guests can also clean their shoes before even getting into the house which means you don’t have to clean that area.

• Line the oven with tin foil to protect it from possible spillage when cooking. It makes for easier clean-up and fewer times you have to grab that spray and clean it.

• Microwave clean-up can be easier if you slide a mug in there with water and microwave it for a few minutes. Top two-minutes. This creates steam and helps get stuck on stuff off. If that doesn’t work, try spraying the inside with vinegar/or your cleaning product and let it sit. Then wipe it away. The goal for us is always to work smarter not harder.

Self Care

• It may seem backwards, or even perhaps cruel, but wake up as early as you can to give yourself enough time to actually get out of bed. I generally wake up sometimes between 6-6:30am so that by 7-7:30 I can roll out of bed and start to move around.

• Comfy clothes are a must. Whether you buy LuLaRoe or some other brand, it is essential to be draped in softness. I just feel fabrics and now I know instinctively what to get. Leggings and tunic blouses are my thing.

• Music therapy. This is no joke. I actually have a play list for high pain days. It helps to be distracted and there is a lot of scientific data that suggests music can alleviate pain.

• Heating pads, mattress toppers, jackets and even heated shirts and car seats. Heat is sometimes your best friend and if it can help, I would keep it close by.

• Sometimes family and friends need a little help when it comes to things we can do, so we can still be a part of their lives. I think it is helpful to send out a kind of memo to friends and family with those activities that you can do and would like to do with them, based on pain levels. Ex: When my pain is at a 5 on the pain scale (1-10, ten being the worst) I can still go to the movies, as long as I don’t have to climb too many stairs to find a seat. OR When my pain is at a 7 on the pain scale, you could come over and we could watch Netflix and binge on chips or popcorn. You come up with activities that you can do when you have less or more pain.

• A Spoonie Kit: This is where all your immediate needs stuff goes. You can make it as an elaborate a box you want, or not, and just use a plastic container from Target. Keep things like prescription meds, Advil/Tylenol, ice pack, essential oils and fuzzy, warm socks.

• Showers: This is rough for a lot of us. Some have a worst time of it than others, but I think it is something we all have issues with. Here are a few tips on how to deal with it and make it easier.

• Use your time efficiently, getting as much done in as little time as possible.

• Install a shower bar if you have balance issues or might become dizzy or faint in the steam. You can even get one with suction cups so it’s no effort to place in your shower. If you can’t fit one, chances are you can fit a stool. Same idea.

• 2 in 1 shampoo/conditioner. This saves the extra time for those of us with long hair that need conditioner. If you can get away without it, go for it! One less step.

• Keep everything close by. A shower caddy that you don’t have to reach to get everything you need or, use a cleaning caddy that some might use for cleaning supplies, to tote your shampoo and soap. Keep it right by the shower where you can access it easily or even in the shower.

• Transfer your shampoo’s and conditioner’s into pump bottles that makes it easier to use for those with joint issues. This is one I am going to do ASAP because it’s genius.

• Terry cloth bathrobe to dry off is also genius. Getting out of the shower can be hard enough, drying off exhausting, so just throw on a robe and wrap up your hair in a towel and just dry off comfy on the bed.

• The biggest hack I will leave you with: Not showering everyday. They also make a dry powder that you can use to refresh yourself with those days you just can’t. Or just doing spot cleaning is okay too. You are the best judge of how you feel and what you can do on any given day. Don’t get pressured and wipe yourself out because you think you should shower everyday.