Happy New Year.
If you may have noticed, I am not here that often. Trying to rework my presence on here and the other platforms I write at. Check out nalubaaletales.com (Trying to curate all things Ugandan on there)
I am a year older this month. And for me, growing older has taken a new meaning. Because, I literally take one day at a time. I like to plan ahead, to be sure but even though I always want to have certain things in place, I am always mindful that things may not go as planned. Because life is capable of happening.
20 months ago, I got diagnosed with Lupus an autoimmune illness. It came as a relief, because I had had so many unanswered health questions for awhile. The first unofficial diagnosis was done by a Student – Dr friend of mine who suspected that it was an autoimmune illness and that I should see a doctor. And I remember her saying : Brace yourself. Lupus is no joke.
I remember thinking, what could possibly go wrong? And boy, was she right. It has been a rollercoaster since then. The kind that keeps you on your toes. I think it’s now that I feel, I am beginning to find some sort of balance. But even then, I can’t be normal. I have had to chart my own path, create my ideals and new normal. Hard, taxing but has to be done, if I am achieve any normalcy.
Lupus mainly affects my gut, my joints and muscle tissues. I remember that I used to be given muscle relaxers by a doctor who didn’t understand what was wrong with me. I would show up with tales like my body hurts. I would be hurting all over for days, and I was always told – Fatigue
Because Lupus affects my gut, I have had to change my diet. I am on Whole Food Plant Based (WFPB) diet. I will occasionally add local chicken (which is very legit in Uganda) and fish especially salmon. (I am not a fan of tialpia or Nile perch, which we have in plenty.) I also eat Gluten Free. Plant based means absolutely no dairy. Thank God for Uganda’s huge variety of food, I have a lot to pick from. When I travel, I stick to whole foods as well, and lots of vegetables.
This is my ideal food list :
Oats (naturally gluten free unless contaminated) I have them with chia and flax seeds
Eggs (organic – no probiotics)
Vegetables (Cauliflower, Carrots, Makati, Spinach, Broccoli
Vegan Sausage (Store bought ) – not very tasty.
Irish potatoes (Because Medical Medium)
Celery + Apple + Cucumber Juice
I use Stevia or honey for sweetening. My system very quickly reacts to Gluten. But, I am working with ‘alternatives’ and that’s a good thing. Kabalagala or Paani are what I indulge in, once in awhile. Snacks made out of cassava flour and bananas. I have also found someone that can make Gluten Free cake from sweet potato flour and with vegan butter.
For the Joints, exercise is key. And it cannot be strenuous exercise. I have now found that brisk walking for about 40mins a day, 3-4 times a week is what I can sustainably do. I do have an Xtrainer at home, bit it’s manual and while, it helps to raise my heart beat – It does little for flexibility and mobility. I used to Spin, but would have very stiff knees. So, I am reluctant to get back to that. Anything where I have to over exert myself may mean I am too tired to do anything the next 2 days. And that is not good at all. I am trying to get rid of the steroid weight, but most importantly be active.
For example : I once took a walk and I was in great mind. So, instead of the usual 40-60 minutes, I went 90 minutes. I got excited and pushed myself. Let’s just say : I couldn’t sleep that day because I had overexerted myself, so my body went past being tired to another mode. My joints hurt for days and so did the soles of my feet. I realised that I should have stopped when I was supposed to, at 50 minutes at most. That way, I feel a good tired and then get a good night’s rest.
For me, the most important and sometimes under rated part of this journey is the mental battle that comes with it. It’s important to be of well mental health. Because Lupus (and most auto immune illnesses and) can be very hard to live with. You have to stop paying attention to pain and fatigue and live life. But also, be mindful and listen to your body — for longevity. If your body says stop, hold on, wait, breathe – listen to it. But the pain and fatigue shouldn’t stop you from living life. (It shouldn’t but it can)
It is also very frustrating to explain to someone, what the problem is. Because it’s not just one, it’s many things. Various symptoms presenting themselves at different intervals. What ails you today may not be what ails you tomorrow – and there are constants : the fatigue, muscle ache, light sensitivity etc depending on the severity of your condition. So, having colleagues, family and friends that understand and are willing to give you space is rare. It’s not impossible, but rare.
As I grow older, I can only hope to get better and to be able to manage Lupus better. It’s not easy, but it can be done. And I am thankful to have the opportunity to do that.
I hope to keep coming here to document my Lupus journey. To talk about my other regimes, my trials and triumphs. I hope I can make this a healthy habit.
Now, let’s eat some cake – It’s gluten free and naked, just the way I like it.