I started this blog to document and share what it’s like to be diagnosed with Lupus. I had never heard of Lupus before my diagnosis so I knew that others must be living with symptoms and not know. It is so important to raise awareness about Lupus so that more people are familiar with the symptoms and can potentially receive a diagnosis quicker, and I want to improve understanding of what it’s like to have and live with a chronic disease like Lupus. Part of that is being really honest about what I’m going through, what I’m feeling and what the impact has been on those around me. Sometimes it’s really hard to write about and I write things in my blog that I would struggle to say aloud. If I want to achieve the things that I do, it is essential that I’m honest. I will always be honest and I won’t be ashamed or embarrassed to speak my truth. But in order to keep my head I have to temper this with a little light-hearted humour, so in contrast to my early post here are some of the things I no longer feel guilty about following my Lupus diagnosis.
Eating two or three avocadoes a day – now I LOVE avocadoes but before Lupus I would always feel guilty if I ate more than a half an avocado per day. I’ll do a blog post on Lupus and diet at some point but I’m currently trying an auto-immune protocol diet which aims to reduce inflammation and the production of antibodies through the food you eat. Clearly this goes hand in hand with medical treatment but it makes sense that you are what you eat so I’m giving it a good go. One of things it recommends is to get as many raw fruits and veggies as possible, including as much as three avocadoes a day. The fat is avocado is good fat high in anti-inflammatory properties and it tastes amazing. I don’t need to be told twice!
But also, eating a copious amount of anything really – I’ve lost over 1.5 stone since being diagnosed with Lupus which is quite a bit for a woman of my stature. This is really typical of an inflammatory disease so it’s nothing to worry about and I’ll return to normal as treatment kicks in. I joke that it’s an excellent wedding diet with great results for minimal effort but I wouldn’t recommend it! Because steroids cause this insatiable hunger that can lead to rapid weight gain I’ve been really careful about what I’m eating but not the amount I am eating. At some points I have no appetite and can’t stomach much at all but I also go through periods of a few days where I can eat for England and I’m just rolling with it. I eat a breakfast of fruits and seeds and nuts; open rye bread sandwiches with beans, greens, spreads and veggies for lunch; and vegetable pasta or curry dishes for dinner. I eat as much raw, fresh fruit and veggies as humanely possible in one day and you would not believe what that looks like – I’m basically keeping Tesco fruit and veg aisles in business! I also eat a lot of dark chocolate because it has anti-inflammatory properties and I’m an addict OK!
Asking for help – to start with I just didn’t have a choice, I was too ill to do anything myself. Now I am learning what I can do, what I can’t do and what I need help with. Sometimes it changes and that’s OK but whenever I need it, I ask for help. This has been especially important for the wedding. I know that in order to be well for the wedding, Henry and I can’t do everything ourselves either now in planning or in the build up to the actual day. The reality is we need help. More help than most couples and more than we thought we would, but the reward is seeing us getting married and me being healthy to enjoy it! Luckily we have the most amazing family and friends so if there’s something that can be delegated we just send a text and it’s off our list. Sometimes it’s other things I need like a sweaty arm to lean on when I’m Bambi-on-ice on the hottest day of the year; a chat down the phone; or a glass of water. The point is, if I can’t do it myself I’m not afraid to ask.
Saying stupid things – I forgot my DOB the other day when I was having a blood test. I just stared at the phlebotomist blankly until he said “do you need a clue?” A few minutes later, when he asked me again to confirm the labels on the vials, I was concentrating so hard on my DOB that I forgot my name. To this he said “are you sure you’re OK?” to which I replied, for some completely unknown reason, “I think it’s the weather” before hurriedly fleeing the scene. Although sometimes infuriating, I am trying to see the humour in the brain fog moments. And anyway, I’d be fibbing if I said pre-Lupus-T didn’t have ‘blonde moments’ but now I have a disease and strong medication to blame so happy days!
Watching YouTube videos of cats and dogs obsessively – this is just a favourite past time and brings me great joy. My absolute favourite is the cat dressed as a shark on a Roomba. It’s literally the funniest thing ever and is sure to lift anyone whose spirits are low. My current obsession is greyhounds and I have watched almost every video featuring a greyhound, most multiple times.
Only washing my hair once a week – anyone that’s ever been ill knows how hard it is to shower. To start with I couldn’t physically stand in the shower without fainting or being sick, and climbing into the bath was too painful on my joints. Now, it just requires so much energy and takes a good few hours out of my day that I simply would rather do other things. Let’s say I have ten ‘spoons’ of energy per day at the moment, on a good day. Well having a shower uses at least four of those, six if want to wash my hair. That doesn’t leave room for much else so I usually end up on the sofa for the rest of the day or back in bed. Sometimes I want to use a spoon to go for a walk or sit in the garden or read a book or chat to friend or cook a meal. So, sorry if my greasy hair offends you. Actually I’m not.
Livin' La Vida Lupus 