When I was diagnosed, I had to learn not only about Lupus and it’s manifestations but also how to make myself as comfortable as possible. When I’m not comfortable, Lupus strikes back at me causing unwanted suffering. Sufferers get a lot of help and recommendations from each other, which is exactly why I’m doing this post, here are the staple items in my life that I cannot live without.
The Heat Pad: This was at the top of my 2017 Christmas list, I originally wanted it to alleviate my often severe Raynaud’s. However, it has been used more to help my Lupus aches and pains. Overtime, I have realised my pain responds well to heat. The pad itself is soft, almost a fleece material and it’s flexible, meaning it can be wrapped around the affected joints. It has 5 heat settings, I usually have it on the highest setting (5). The pad is on a timer and after 3 hours, it will turn to standby mode and it’s also machine washable, which is great when your puppy decides it’s a great place to pee (evil eyes at Fifi). In recent months, I’ve had a lot of back pain which varies in severity, the heat pad has proved most helpful for this. I have of course used it for Raynaud’s, I place it on my feet when I can no longer feel them and I place my hands on it when they become too cold. It’s used daily and I highly recommend one if your pain responds to heat…or to just feel super cosy!
Hot Hands: Like stated above, my Raynaud’s can be severe, especially in my hands. If I go out without gloves, I almost instantly start to lose the feeling in my fingers. It causes great pain and distress, causing me to find any excuse to stay indoors for much of the winter months. I was going to a Christmas market, something I was excited but nervous for due to Raynaud’s, I found the Hot Hands online and decided to try them. Once you take them out of the packaging, the air starts to activate them, and the results were life changing. I was out in minus temperatures for a few hours, holding cold cans of Coke and with barley any Raynaud’s symptoms in my hands. Although the packaging states they stay hot for 10 hours, I’ve found they can last up to 14. I urge any Raynaud sufferer to at least try them, I couldn’t live without them and now I can leave my house knowing my hands will be warm and comfortable.
Heat Holder Gloves: I spotted these gloves on a cold snowy day whilst shopping. The thickness and 2.3 tog level pulled me in and I ended up buying them. Like the Hot Hands, they have been nothing short of a miracle. They feel like duvets for your hands, they are unbelievably soft and warm due to the fuzz in them and the tog level. I double them with the Hot Hands. I highly recommend for those who have Raynauds and to those who feel the cold.
Tiger balm: Think Deep Heat but stronger. There’s two versions, white and red, I use red which is the stronger of the two. I put it on my elbows, wrists, knees and ankles. I find it most helpful for throbbing pains, it definitely dulls it down. It works even better when doubled with the heat pad. I have tried Deep Heat and even freeze gel/sprays but none of those products come close to Tiger Balm. The only downside is it can stain light coloured clothing. But, I’d rather have stained clothes than sore radiating pain through my joints.
Memory Foam Pillow: It might sound odd, a pillow helping me. But, my memory foam pillow serves as a place to rest my joints when they’re sore and swollen, especially my elbows and ankles. I’ve found usual pillows flatten when I prop my feet upon it but the memory foam stays firmly in place.
Central Heating: A cold house will encourage my Raynaud’s to rear it’s ugly head and the cold air will cause my joints to seize and become painful. I have found 23.5 to be the perfect temperature, it constantly stays at this temperature and very rarely gets lower.
Making sure my medication is organised is a must for me. I also need to be able to keep track of what pills are running out and what isn’t, so I can put the correct medication through on my prescription.
The Bag: Once upon a time, it was used to hold make up and hair products for on the go. Now, it holds painkillers such as paracetamol and ibuprofen. I keep prescription pain meds such as Codeine and Tramadol in there too. It also houses eye drops in case I need them on the go. I keep it in my handbag but also carry it around the house. Most people have seen me with ‘the bag’…I’m the best person to come to if you have a headache!
The Note System: I either keep notes on my phone or in a note pad. I jot down appointments or meds that need re-stocking. Due to brain fog, I can’t rely on myself to magically remember, especially dates and times.
The Trolley: I found this trolley on Amazon and for a great price. I use the two top drawers to store my meds (although I’m really pushing the 2 drawer thing, I think I actually need 3-4). The first drawer is used to store my meds that haven’t been sorted into my monthly medication box, such as my Hydroxy, Azathioprine and meds to stabilise my other conditions. The second drawer is used to store painkillers, mostly prescription pain meds, but there is also back up Ibuprofen and Paracetamol. I like how the trolley is a subtle way to store medication, most people would look at it and think beauty products are stored within it, not medication.
Monthly Pill Organiser: This was another great Amazon find at a cheap price. I’ve used weekly pill organisers in the past, but I felt like I was constantly refilling it. It’s so much easier to have a monthly one, it takes around an hour to fill. I could never go back to a weekly organiser after having this.
Since being diagnosed with Lupus, I’ve had numerous skin issues. But, with a lot of trial and error I’ve found the perfect products to somewhat settle these issues.
Body Butters: I suffer with itchy skin, it feels like millions of insects crawling under my skin. In the past, I have scratched my skin until it bled. I have tried creams from the doctors but they either came with unpleasant side affects or had no affect. I started using body butters which oddly helped the most. I love The Body Shop body butters, my favourite being Almond Milk and Honey. I have to moisturise at least once a day to make the itching bearable or none existent.
Liz Earle: For some unbeknown reason, when I commenced my treatment for Lupus, I developed horrendous acne. I had tried everything I could within a decent price range but nothing helped and my skin was getting worse. I bit the bullet and bought Liz Earle. It definitely works and the price of the products reflects the quality. Due to how sore and broken out my skin was, my GP decided I should start antibiotics. I can balance my skin with the two, I still break out but my face remains somewhat clear and pain free.
Having a Chronic Illness can be isolating and lonely. I’m a person who enjoys their own company but being alone for most of the week can take it’s toll. When my family leaves for work, I can become anxious because I’m alone and overthinking. I have numerous things to occupy me, so I can get through the week without feeling too lonely. Here are few examples:
Netflix: I despise daytime television, I find it brain numbing so I sometimes flick to Netflix. I absolutely love documentaries and will sit through pretty much any (unless it’s the animal documentaries that show animals chasing and eating each other). But, it’s no secret that my favourite things to watch is true crime and anything medical.
Reading: Sometimes I like to read, if my brain fog and concentration allows. My mother has recently got me into thriller books. You can pass hours if you’re engrossed in a book.
Dogs: When I first got poorly, all I had was my little Theo. And because it was just me and him, we formed a unique bond. He wouldn’t leave my side and has licked the tears off my cheeks numerous times. Since then, we have added 2 more dogs. Just hearing them around the house keeps me settled. Animals are a great therapy and without having them around, I think my mental health would have declined.