Welcome back! If you’re just checking out TWR for the first time, welcome! We are one post deep into a four part series, so, if you’d like to check out the first post on Autism, click the title in the list below.
These are the topics we’ll be tackling for this short series, so, buckle in for the ride!
-Spoonie Life (“Spoonie” is code for those who live with chronic illness.)
-Service Animals
Now, if you’re unfamiliar with chronic illnesses, that is simply splendid and I am so happy for you! Chronic illness affects so many people and you are very fortunate if it has not touched your life in some way. If you are familiar with chronic illness, either by personal experience or via a friend or family member, I am so sorry. Chronic illness is difficult and I don’t just mean for the ones who have it. There are so many types of chronic illnesses and they affect the entire household at a minimum. Chronic illness can also affect someone’s workplace, places of recreation, places of worship, and more. Before we go much further, I thought it might be helpful to lay out the standard definition of a chronic illness. It is, in a nutshell, a longstanding health issue that affects a person’s way of life. These chronic illnesses may
have a long “active” period (where the health issues flare up) followed by a dormant or less severe period, or, they can be pretty consistent for months or years at a time….or lifelong. There can be complex causes and risk factors and there may or may not be effective treatments. Many treatments for these illnesses are just damage control or comfort measures, since the root cause either cannot be found or cannot be treated in such a way as to eliminate the problem. Some illnesses respond well to strict diets while other “spoonies” (a nickname many who suffer with chronic illness have taken, thanks to Spoon Theory, which is a wonderful analogy) notice no change at all. Wondering what types of health issues are classified as chronic illnesses? So glad you asked! These are just a few of the chronic illnesses that may be considered more common from the very, very long list of chronic illnesses that exist.
Arthritis, multiple kinds Asthma COPD Crohn’s and Colitises Depression and Anxiety, which can have physical symptoms Diabetes Epilepsy Fibromyalgia Graves disease Chronic migraine MS POTS And a multitude of chronic pain illnesses and diseases.
Again, that list is nowhere near a complete list. It’s barely a drop in the bucket. Now, as a
spoonie family, we’ve adapted and changed little things in our lives to make things a little easier as we can. One thing we are in the process of doing is training Service Dogs for medical alerts and responses. These can be for convenience/ease of treatment or for lifesaving measures. I’m looking forward to writing that post. For home life, many spoonies will have a “go station.” Everyone has a different name or place for it, but, it’s a place in their
home where, when they’re having a rough day, they can park themselves and still try to function until the worst is over. For a diabetic, that may mean a glucose meter and a little can of orange juice on their nightstand, to quickly get them up from a low glucose level or a fast acting insulin injection to get them down when they’re too high. For an asthmatic, it may be an inhaler and a humidifier. For someone with chronic pain, it’s probably where they keep all their emergency medications, a heating pad, and their favorite blanket. Even if a spoonie doesn’t have what they think of as an official “go station,” they still could tell you exactly where to get their most needed items when they’re having a harder day than normal. Fibromyalgia? They know exactly where their favorite heating pad and softest articles of clothing are. Arthritis? They know where their favorite cream or lotion is. Migraineur? They could tell you in a heartbeat where their noise-cancelling headphones and dark sunglasses are. Each chronic illness has its own traits and, much the same, each spoonie likely struggles more with a different aspect of their illnesses than someone else who has the same thing. Each illness is different. Each case is different. Each person is different.
Now, if you don’t have a chronic illness, what can you do to help someone who does? Well, that I can’t tell you. I know that’s not what anyone likes to hear, but, that’s the fact of the matter. As I said above, each illness, case, and person is different. The absolute best thing you can do for a loved one with a chronic illness is ask them what THEY need. I could give you every trick in the book that we use in our home, but, if it isn’t what your friend needs, it’s of no use at all and may even make them worse, so, just ask them. If you’re looking for a good place to start, I can offer some helps that are commonly useful for many or most chronic illness are:
-Meals—healthy and easy to reheat is best, since their body needs all the help it can get to get back to a functional level of whatever their “normal” is. Be careful of allergens or ingredients that may exacerbate their individual health issues. (E.g. Asthmatics may need to limit dairy intake, as it can encourage production of phlegm and make breathing even more difficult. A dinner that is largely composed of white rice, pasta, fruit, or other high carb ingredients could be more harmful for a diabetic. Meals with raw vegetables, corn, nuts, and more could cause someone with Crohn’s or colitis to get even sicker.) -Childcare or child entertainment—if your spoonie has kids, trust me, they NEED your help! If you’re not able to watch their kids for a couple hours so they can rest or go to a doctor’s appointment, drop off a new toy or movie on their door step or send them a surprise on Amazon. Books, educational movies, fun (healthy) snacks, etc. are great distractions. Do be considerate of the spoonie’s health issues, though (noisy toys aren’t great for encouraging rest and relaxation in parents). -Run errands—chances are, if they’re feeling poorly enough that they need some help, they likely don’t feel like running all over town to go grocery shopping, to the pharmacy, taking Fido for a vet visit, etc. Ask if they’d like to order groceries or their prescriptions online for you to pick up or if you can play chauffeur for their adorably furry friend. -Take them something fun—they’re bored. Plain and simple. When you feel like garbage and you don’t feel like doing much as often as a spoonie does, you get tired of Netflix and Pinterest and the same books that have been on your nightstand for a month. Take them a new sudoku book or an old classic on DVD. Text them to check in and see how they’re doing. Send them some funny memes on spoonie humor. Laughter is good for the soul and a merry heart truly is like a medicine. They may not be well enough to hit the gym, but, you can help them work out their funny bone, even from the other side of the world, thanks to technology. Even someone who may not typically suffer from depression can have a hard time staving it off when they’ve been bedridden or housebound for weeks on end. Many chronic illnesses bring along a side of depression (among other health issues) in their carry on bag. -If they’re hurting, take them something to help with the pain (and, if you can, make it
good). If you're good at gentle massages, offer them one or volunteer to drive them to the chiropractor or massage therapist. If they're not up for that, a BIG heating pad is amazing. Most heating pads are about 12 inches by 15 inches. That’s great, but, if you’re a chronic pain spoonie or dealing with something like kidney or gallbladder issues, you want something that can cover your entire pained area. A 180 square inch heating pad doesn’t cut it. Thankfully, there are multiple options for larger ones, if you’ve got the budget for it. Amazon has a couple that are 561 square inches (33”x17”) and 480 square inches (20”x24”). (These are affiliate links. Click here for more on that.) -If they’re your significant other, PATIENCE—they undoubtedly hate feeling like a burden. You may not consider them a burden, but, they need to know that. Love on them. Ask if they need a massage or a nap or to sit outside for a bit. Sunshine works wonders on the disposition, especially when you’ve been trapped inside for days or weeks. Set up a comfy chair by the window or on the porch. If it’s cold, grab a warm blanket and some hot tea or cocoa. If they’re up for walking, ask if you can walk them around the block or even just to the mailbox and back. They may not be feeling strong enough or stable enough to walk much alone, but, having you there to lean on, physically and metaphorically, can make all the difference in the world.
Now, if you ARE the spoonie, let me just say, I am so sorry you have to bear this burden. A surprising number of chronic illnesses are invisible and people can be so insensitive (non-spoonies, keep in mind that a sensitive heart and mind go a long way). Try to be patient with them and with yourself. Trying to rush back to “real life” isn’t going to do anyone any good if you’re right back in the same place in a day’s or week’s time from pushing yourself
too hard. Hydrate, rest, laugh, and nourish yourself mentally, physically, emotionally, and spiritually. There are more parts to the body than just the physical and they all need to be as healthy as possible. It may be easier said than done, but, if help is offered, accept it. If you need help and it hasn’t been offered, ask for it. I know. That’s a hard one, but, your loved ones would much rather come scrub your toilets and wash week old dishes than have you getting sicker and sicker from trying to do more than you’re able. If you haven’t already, join a FB support group. Seriously. No one understands your struggles better than someone going through the same thing. These support groups are great for getting tips on how to cope with your particular illness, commiserating (Don’t knock it! Misery loves company and it can be cathartic.), and laughing at things non-spoonies would never find funny or would feel bad laughing about with you. Try looking up a generic spoonie/chronic illness group or groups specific to your illness.
There is so much more information on chronic illness that I wish we had time to delve into, but, something tells me y’all don’t want a 50,000,000 word post to read. If you are curious about a chronic illness someone you love has, I’d recommend a quick internet search. It means a lot to a spoonie when someone takes the time to learn about the condition they’re struggling with. I hope this has been at least a little eye opening for non-spoonies and I hope you spoonies will help others help you.
Have a restful weekend and conserve those spoons!
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