Fatigue....I could quite literally leave this post there couldn't I as there really isn't any way to even start trying to describe what fatigue is. However as it is one of the most distressing symptoms of many chronic illnesses I am going to give it my best shot and give you some hints and tips for how I combat it...well at least try to.
Starting with what fatigue actually is....
My biggest problem when trying to describe fatigue is that so many people just believe that it is tiredness; that feeling of being slightly exhausted by the end of the day. Out of all of my symptoms, this is probably the one that I get most frustrated about - especially when people say "you will feel better after a good nights sleep".....Oh if only you knew.
The closest I have ever been to being able to describe what fatigue feels like is to use the flu as an analogy. I know so many others use this, so I will take a different approach. So, here we go, close your eyes and try to imagine this. You have woken up with the worst case of the flu. On top of the runny nose, shivers and horrendous cough, you feel absolutely drained of all energy. Your joints ache, your head pounds and you cannot eve get the energy to roll out of bed to the kitchen. We have all felt this at some point and it's particularly unpleasant.
Now imagine that you have also just finished running the London Marathon. You have completed the 26 miles, your body has given up at the finish line and the flu has kicked in. The feeling of utter despair that you cannot function, keep your limbs moving, make a sentence legible and keep your eyes open. You have really pushed yourself to the limit.
The above is how I wake up feeling every single morning of every single day. You may think I am exaggerating, those of you who know me will tell you that I will never answer my phone after 10pm because I will be fast asleep, I leave nights out at around 7pm because I need to sleep oh and then there was thee time I fell asleep next to a speaker at a festival. Every morning when I wake up I feel the same amount of exhaustion that I had when I went to bed; there is no relief, I do not feel refreshed and that doesn't change if I have 8,10,12 hours sleep.
Dealing with the fatigue and living my life
Everyone's disease progression is different and with it comes a whole host of different symptoms, however in the majority of chronic diseases, fatigue is there. It is by far the hardest symptom for me to cope with, worse than the pain, worse than the constant nausea. This is the one that stops me doing the majority of the things that I so long to do. So over the years I have developed strategies to try and combat some of the fatigue in order for me to have a life that I want to live, not one that Lupus dictates I live.
The first tactic I have is timing everything that I do. I know this sounds weird but by knowing how long it will take me to do things on a good day, gives me an indication of how long I will need on a bad day. For example, getting to the train station in the morning. On a good day it takes me 5 minutes to walk to the station and 20 minutes to walk to the office at the other side. It is because of this, that I know on a bad day I need to add an extra 20 minutes onto the overall journey. It is because of this that I pick a train that gives me time to get to work on a bad day and still be on time.
Taking breaks when breaks are needed
One of my issues it that when I get really fatigued I struggle with my joints stiffening up, especially if I am sat at my desk for long periods of time. Now I know you may look odd getting up and having a little walk every now and again, but there are ways to hide this. For example, at work I am the one that loves to make the tea, not because I enjoy making tea, it's because it gives me the chance to have a little walk around. This gets my blood flowing, combats some of the fatigue and keeps me from the pain a little longer.
This is a tactic that I also use when at home or out and about. Giving myself an hour of activity and then 15 minutes or more of rest. It is the only way that I can last a full day of doing anything and although it doesn't beat the fatigue, it certainly helps me to keep it in check.
I change my diet on bad days
I am not one for telling people what to eat and when, actually I get quite annoyed when people tell me that Lupus can be cured by diet - wouldn't it be great if it was that simple. However there are some days that I do adjust my diet to help lift the fatigue.
Starting with the amount of coffee I drink. Caffeine is actually one of the worst things you can have to combat the fog, I know that sounds counter productive, but caffeinated drinks will cause you to crash. I do have a coffee addiction I am pretty sure, which is not healthy but I enjoy it, so on bad days I limit myself to one coffee in the morning and that's it. I substitute caffeinated for decaf if I want a Costa in the afternoon and for the rest of the time I stick to tea.
Then there is meat, that is the strangest statement to make. I was a vegetarian for years until doctors made me aware that I was lacking in certain nutrients, however even to this day I find that if I eat too much red meat I become more fatigued. Instead, on the days that I have really been struggling to stay awake I turn to fish and vegetables. I basically chose foods that I can digest easily, saving some energy to watch some TV in the evenings instead. Plus being bloated and fatigued is a terrible combination.
Along with the diet changes, I also do light/gentle exercise when I a at my worst, even if this is only a ten minute walk in the fresh air. I find being outside wakes me up enough to keep my brain going, even if my body has given up. Plus it helps the blood flow and as Lupus can affect the heart I am adamant that I will keep my cholesterol and blood pressure in check.