I have left a few events in the last few months in somewhat of a hurry or with a different attitude to when I first arrived and it broke my heart doing that because what they did not see, was the consequences after I left.. which was the hysterical crying, numb legs, overwhelming fatigue, body feeling like lead and not being able to leave my bed the rest of the night or over the next few days.
So for those who do not understand this is my blog post for you. I have Chronic fatigue and I get tired really easily among other things. Here is an example, if it is an event or outing where I have to stay out late, or walk around for over an hour my body fights me. I may look fine on the outside but that is not what I am feeling on the inside. I know a flare is coming on when my body starts to refuse me walking and then I start to get frustrated, upset and really tired - because I am over working my body at this stage.
People may see that I get tired or see that something is wrong because I tend to go quiet, mainly because my body is fighting me and I am fighting to be normal and participate in whatever we are doing. I do not want people to think that I am just being a snob, or I am bored, sometimes I am just so fed up with this illness that I am ready to start crying but I do not know how to tell people this.. nor do I want to start crying.
How do you tell a complete stranger that you have a chronic illness? That it is taking everything in you to be where you are right at that moment. How do you tell the people you love and who you are with at that moment that you want to go home and sleep, or even just lay down. How do you tell them without them being upset with you for leaving early, judging you, or think you are overreacting?
Well honestly, I do not know. Yes I am good in the sense that I am creating awareness for my illness and educating those around me that I am not alone in my fight, because there are many people out there who suffer from chronic illnesses on a daily basis like me. What I have not learnt yet is gaining the strength to tell people that I cannot physically do what they want to do.
No! I have not learnt that strength yet and you know why? Because it is still hard to accept that I cannot do everything like a normal healthy person can and it breaks my heart having to sit down and admit that to people. This is my journey and my recovery and yes some days are good, I can go out, I am well, I have energy and nothing happens... but do NOT be fooled, because I have now learnt how to minimise flares. So though I am happy that I am having a good day, I am still trying to be careful and I am worrying at any minute I could end up relapsing.
In saying that, I am grateful for my good days (which will be talked about in depth in another post).. but it is still a struggle because I do not want to relapse when I am having a good day. It will always be a struggle for me when I am out and about... and one day I will accept that.
I still like being asked to go out because it makes me feel like none of my friends have forgotten about me and that you actually still think about me. Just I hope you understand that this is the reason I may say no, or I may leave early. I am fighting my illness and I am fighting to be a normal 19 year old.. and my god that is hard to do. So do not take my absence as a sign of weakness, because I am fighting a very heavy battle.
Felicity. F