Five years ago I was diagnosed with my first chronic illness. Fibromyalgia. Two years later I had various tests as I believed that my body was telling me that something more was happening underneath. I was told that it was all just down to fibro, and from then on, everything was down to fibro.
Fast forward to now. For the last six months I have been in and out of hospital, fighting my way through dismissive doctors who see the FIBROMYALGIA stamped on my medical records and dismiss me as a hypocondriact or a drug seeker. I have ended up having to educate myself in medical terms to fight my case and prove doctors wrong, and guess what? The condition which I queried having three years previous and was dismissed as “Just being fibro” is actually something more.
Lupus. LSE. Connective Tissuse Disease. An auto immune condition hard to diagnose which can affect the tissues, organs and functionality of your whole body. My gastro doctor proudly stated that I did not have Crohns Disese and was confused when I was upset by this – it wasn’t upset, it was frustration. Crohns is treatable. Even if you live with a stoma and end up having your bowels removed, you can live a very normal life. It’s not debilitating, it does not come with a reduced life sentence and the risk of further medical problems, but yay! At least I don’t have crohns!
My stomach problems which have been ongoing for six months is actually colitis, a secondary symptom of Lupus. A blood test which checks for the sedimentation of red blood cells, ESR, most recently came back with a score above 60. For my age it should be below 24, so the current age of my body and it’s functionality stands somewhere around that of a 100 year old.
Of course I’m not 100, I’m 37. I have to wait for my next round of consultants appointments to happen to find out what happens next, and until then, I have to manage. Anyone with a chronic illness or auto immune condition will know that there are certain items which you need to keep close at hand to get by in life, so here is my guide to how to survive with chronic illness.
Most people in this day and age would say that they could not survive without their phone, but mine actually is so much more to me. Not only do I use it to keep in touch with friends and up to date on social media, I also use it to track my condition via various apps. Samsung phones have a built in health centre which can monitor your daily step count, oxygen saturation, heart rate, stress monitor and more. Combine the heart rate monitor with some advanced technology and you can even monitor your temperature using the phones camera. My phone also holds my full medical history and my emergency contacts in the ICE (in case of emergancy) function which is accessible from the lock screen. By using these features I can easily see what triggers certain flares or if I need further medical help.
Yes, another electronic device. But this one is for entertainment only. Many hours spent in hospitals or in bed mean I read my fair share of books and get through binge watching tv shows at an alarming rate. My kindle fire 8 is easy to pop in my bag, it holds its charge, and has everything on I need to keep my mind busy.
My bed is my safe place and where I do spend a lot of my time. It’s only right that it should therefore be as comfortable as possible. 15togg feather duvet which is even on during the summer months (it’s common that our body thermostats do not function like normal), thick mattress topper, plenty of comfy pillows of varying thickness and texture because what works one night, may not be the same the next. A few blankets and throws, because I am always either too warm or too cold. Basically my bed is a giant marshmallow. It’s needed, my body thanks me for it!
DoTerra essential oils have become a huge part of my life in the last year. Not only can you use them in a diffuser to smell amazing and transform your home, they can be taken as supplements topically or even internally to help with all sorts of ailments. I carry peppermint beadlets and on guard beadlets in my handbag at all times. Peppermint helps alleviate stomach upsets, heartburn and indigestion, as well as reducing a temperature when I start overheating. On guard is the perfect sanitiser without chemicals, it kills bugs and germs plus smells like Christmas.
This is a recent purchase but one I would not be without now. Sometimes when the pains and flares of chronic illness get so bad, it’s hard work to even attempt to fill the kettle to make a cuppa, let alone pouring it after waiting. With the push button machines such as Nespresso, tea and coffee can be dispensed by the push of a button, it’s the perfect temperature so the risk of burns is reduced, there is no lifting and it’s instant. I purchase tea pods and coffee pods in bulk from Amazon.
It can be dangerous having Amazon prime, especially late night shopping when bored with the one click purchase option which can get pressed “accidentally”. But it’s also a life saver when it comes to being able to shop from the comfort of home and get items the next day, or in some places the same day. Emergency purchases of loo roll, cat food, clothes, gifts. Anything really. Amazon has it.
With everything else going on, comfortable shoes are a must. We go for comfort over style on most occasions but for me Hotter shoes are hands down the best for my feet. In winter my Emu boots keep me warm, but I always return to my Hotter shoes.
They look just like fingerless gloves but actually are a medical glove which helps with arthritic pain in your hands with the added bonus of keeping the heat in too. The ones which I have purchased are great for cold mornings, especially when driving or if I wake up to find that my hands just don’t want to work.
Friends that truly understand what you mean when you say you are having a bad day, the ones which know what a flare is and will bring you take away food or chocolate in the middle of the night and not care what you look like or the state of the house. Those people mean the world to me and keep me going.
Ear plugs and sleep masks
Not just for hospital stays but for every night as sleep is an important part of recharging and recovering. Even the slightest noise on my worst days will keep me awake, I have had to make sure that now I have no cats in with me at night and I use ear plugs and sleep masks to make sure I get a decent sleep.
Notebooks and stationery
Being organised is a must as anyone with a chronic illness will know, brain fog can hit us at the best of times. I keep my Personal Planner and various notebooks to hand so I can keep track of what’s going on when. Also having copious amounts of stationery, stickers, books and the like to play with brings me joy, and those moments can brighten up a dull day.
Have I missed anything? If you think I have, I would love to hear about what you keep close by in the comments or on my Facebook page.
Love, hugs and fluffy blankets
Please note: This post is not sponsored in any way, links in this post relate to other posts I have made on my website. I have not been provided with any products or paid to discuss any items in this round up post.