Welcome to my blog! Today we’re doing a bit of a different post, as we’re not going to be looking at writing or reading, but chronic illness!
As anyone with a chronic illness can tell you, it affects pretty much every part of your life. From what you eat, to what you wear, where you work, what your hobbies are, and even who you make friends with.
Obviously, when chronic illness is framed like that, it can sound like it’s all there is to my identity, but really it’s not. Accepting that something affects my life is not the same as letting it rule my life. So, with that in mind, let’s have a look at my top ten things that help me focus on other things–whether that be dogs, horses, writing, reading, or work!
Also, as a quick disclaimer. This list may have things that aren’t suitable, or won’t work for you, even if you have the same illnesses as me. Always talk to your health care professionals if you aren’t sure about something 🙂
Hot Water Bottle
I have no idea where I would be in life without my hot water bottle, it’s a lifesaver. I live in an area where the temperature varies drastically from winter to summer. It can go above 45 degrees Celsius in summer, and occasionally gets as cold as -10 degrees in winter (thankfully this isn’t common, but nights easily get down to -3 or -4). And of course this wreaks havoc with my chronic pain.
Luckily, my hot water bottle comes charging gallantly into my life to save me from some of that pain. They work great because they heat all of me up, but they can also be placed on specific sore areas. Heat works by increasing circulation and blood flow to a specific area, which helps decrease discomfort and improves muscle flexibility (you can read more about how heat and cold therapy works here) and these all work together to reduce chronic pain and stiffness.
So for cold days, or days when my leg is aching more than usual, my hot water bottle is a must have!
Long Heat Bag
Ordinary heat bags are great, but long heat bags are just…the best thing since sliced bread basically and they have so many uses. The heat bag I have is about the size of a small scarf and it’s stuffed with silicone beads. I have two main uses for it. One is to use a heat therapy scarf, where I heat it up and drape it over my neck and shoulders. My chronic pain specifically targets these spots, so having something more mobile than a hot water bottle or traditional heat bag is really good.
The other thing I use it for is wrapping up my leg or ankle. Since I fell off a horse a few years ago, I’ve had a leg that aches on and off. With the wild weather we’ve had lately, it’s been aching like nothing else, and my long heat pack is great to wrap around it, and then wrap up in a blanket.
My gloves are indispensable, especially in winter! I suspect I have Reynaud’s Phenomenon, which is a condition where blood vessels in the hands and feet restrict. This makes the hands and feet very cold and numb, and this is something I experience almost every day (particularly in winter). You can read more about it here.
Unfortunately, there’s not a lot that can be done about it, but gloves certainly help. I have two pairs I wear frequently. One pair are fingerless, which I wear for dog training, typing, or other things that require a bit more dexterity. The only problem with these is that my finger tips are still exposed and still get quite cold. My other pair have full fingers and I use them for very cold days when the pain is bad.
If you have similar problems with the cold, definitely look into a high quality pair of gloves, because these have been an absolute game changer for me.
Comfortable Shoes (With Orthotics)
Orthotics literally changed my life, as did buying comfortable shoes that actually fit properly. After falling off the horse as mentioned above, I had to have several months of physiotherapy, because I stopped walking properly, which then messed everything up royally. I ended up getting orthotics to help put my foot back in the proper position (I’d started walking on the outside of my feet, which obviously isn’t great). I still wear them, because my feet very easily drop back into their terrible old habits.
Beyond that, buying shoes that are a good fit is also important. Most cheap manufactured shoes are based on one very narrow type of foot, and don’t fit very well. As someone with wide, flat feet and chronic issues as it is, these sorts of shoes really mess my feet up. Which is why, if you know me in person, you’ll know that I only have three pairs of shoes which I wear on constant rotation. I also very rarely (like, once a year rarely) wear thongs/flip flops, or high heels, for the same reasons.
Up until a few months ago, I’d been a lifelong dancer (unfortunately, my school closed down due to covid, so I’m currently dance-less) and strapping tape was a must have for any hardcore exercise.
As you may have gathered my muscles aren’t the greatest and tend to sprain very easily (over my life I’ve had….hmmm, getting close to ten major soft tissue injuries?) so strapping tape helps keep them supported and where they should be. And it makes a real difference too, it’s definitely prevented me from getting a lot more than ten soft tissue injuries.
Also, it comes in funky colours. Personally, I have purple, skin coloured (boring, but necessary for dance shows), red and blue tartan (to match my kilt and jacket)
I’m only including basic, over the counter medications here, and I know they don’t work for everyone, but for me they are a lifesaver.
My two favourite anti-inflammatory meds, which are available to everyone–ibuprofen and diclofenac sodium (using their generic names because I’m a pharmacy tech, and also because I know they have different brand names in different countries!)
Ibuprofen is usually taken as an oral tablet (and for my Aussie friends, you’d probably know it as Nurofen or Hedafen) and it’s a basic painkiller and anti-inflammatory. I personally find it works quite well for my pain, so I take it whenever I have a particularly sore day, or if I can feel a flare coming on. I also make sure I carry some in my handbag and work backpack so I always have some on me (which has also come in handy for other people as well!)
Diclofenac Sodium comes in an oral form, but I don’t think it can be bought over the counter. What can be bought over counter is its gel product (in Australia, it’s called Voltaren), and it’s great for helping with specific pain because I can just rub it straight into the skin. I use it all the time, particularly on my neck, shoulders and wrist and it works brilliantly.
To go along with OTC meds, a lot of people with chronic illness benefit from prescription meds. Obviously, these have to be prescribed by a doctor, so talk to them if you think you could benefit from some form of prescription painkiller.
Personally, I take 25mg Amitriptyline, which has worked wonders for allowing me to function every day without unbearable pain and fatigue. It’s not perfect, because I still experience flares, and still deal with day to day pain, but it helps a lot. I’ve almost been on it for a year, and the changes its made (especially as my levels of pain/fatigue have increased) have been wonderful!
Amitriptyline is the base line medication that most doctors start by prescribing for chronic pain, but it also doesn’t work for a lot of people. There’s plenty of other options though, such as gabapentin, duloxetine, and venlafaxine. Your doctor will be able to help you decide what to try and what will work best for you specifically.
I get dehydrated very easily, and that has major affects on my fatigue and pain levels, and causes other issues as well, such as severe headaches and sensory processing issues. But I was finding that even drinking lots of water wasn’t helping that much. Then my mother hit on the idea of electrolytes. I mean, she didn’t invent them, but she might as well have, as far as I’m concerned.
And they’re so good, my friends. If I actually remember to drink them, I’m far less dehydrated than I used to be. They do taste kind of gross, but I pretty much just get used to them and live with it. As a very active person, I also sweat a lot, so replacing those electrolytes is super important.
My final note is that sports drinks are not really that great, since they usually contain a lot of sugar, as well as artificial colours and flavours. For that reason, I use electrolyte tablets, which have only small amounts of sugar and flavours. They don’t taste as good as Gatorade, but its healthier. (Also, if you’re confused about what electrolytes are, or want to see some myths busted, Healthline has a good article on the topic)
Yoga Mat and Block
Now, if there’s one thing that gets a spoonie riled up, it’s the phrase “have you tried yoga?” This phrase usually comes out of the mouth of a middle aged woman with either a bob or pixie cut (probably died platinum blonde) and it’s either genuine in it’s intent, or maliciously gleeful.
Yes, we’ve tried yoga, and no it didn’t cure us.
However, there are a lot of benefits to yoga (and other exercise forms, like Pilates and gentle dance). Yoga helps stretch the muscles and improve flexibility (important for those of us with chronically stiff bodies), it also helps improve strength and balance, and has benefits for mental health as well (there’s an article here about several more yoga benefits). No, it’s not a cure, but it’s a legitimate part of pain management.
Obviously, you do need to be careful with yoga, particularly if you have chronic pain. Some of the routines aren’t chronic illness friendly (and I’ve given myself a couple of flares and pulled muscles from choosing the wrong routines) and like anything it has the possibility to cause damage. However, YouTube has hundreds of tutorials which are particularly geared towards people with chronic illnesses, and as a general rule, bedtime routines, beginner routines, and meditation routines are safe. My advice is not to try out the “Energizing Morning Wake Up Without Coffee!!!” routines. Because they hurt way more than I’m willing to admit.
Last but not least, we’ve come to soft clothes. And what do soft clothes have to do with chronic illness? Well, everything.
Many chronic illnesses have sensory issues as fun baggage which can make clothes absolutely awful to wear.
Fortunately, I am not advocating for us all to go around naked. For one, if I did that where I live, I would promptly look like a boiled lobster. However, finding soft and comfortable clothes that don’t trigger my sensory issues is of my paramount importance to me.
Certain types of material are pretty safe, like rayon dresses and soft cotton shirts. Other things are ok on certain days, and sometimes I just need a ratty, but comfy old shirt and track pants.
So experiment around a bit, and find what’s comfy for you, and what you makes you feel just a little bit better about life.
What are some things that help you with your chronic illness or disability? I’d love some tips! Are you going to try any of these items? Would you like more content like this, or would you prefer I stick to fiction?