'Tis true that. (Source)
By the time I got to my Humira review appointment yesterday afternoon, I was already feeling fragile. I was exhausted and brain fatigued from driving all the way to the city outskirts (the furthest I have ever driven with chronic fatigue). I met Papa Bear at work and he drove me the rest of the way into the city to my appointment. Bless him!
I was already upset from my little morning meltdown. My clothes no longer seemed to fit me and for the first time in my life, I didn't like what I saw in the mirror. The weight I'd stacked on due to a long period on prednisolone finally hit me, along with the realisation that, given a few more weeks on this stuff, I'll need a whole new wardrobe.
Medication induced acne wasn't helping things either. I felt fat, disgusting and ugly. And the first thing that was brought up in my appointment was my medication induced weight. I wanted to cry. Yes, I know I have beefed out and I am aware that I am rockin' a nice fat moon face BUT I don't need it pointed out to me. On the contrary, I guess it did need to be noted, because I sure need to get off this medication before it does serious damage.
There is nothing quite as motivating when weaning yourself off a drug as a doctor telling you "I see you've got the prednisolone moon face happening".
And if my self esteem wasn't already suffering enough, I got quizzed on what I was currently doing with myself and what my plans were for this year.
I'm struggling to keep my shiz together just managing to get through each day. I'm struggling just to get simple things done at home because I am frustratingly fatigued. And I'm suppose to have great almighty plans?
I mentioned my success of exercising two times a week, and I stressed that I was struggling with the fatigue from it. I hesitantly admitted that I wasn't working my retail job because of brain fog, but to keep what little dignity I had left, I made it known that I was researching online childcare courses and making some inquiries, but that I was doubtful as placement is a real problem at this point in time.
The advice I received I thought was ridiculous but true.
I was told that if the course that I want to do doesn't work out- to just pick something and study it.
"Don't do nothing".
By the time I arrived home, I was a sobbing mess. My Rheumatologist is right. I can't just do nothing this year like I have for the last five years. But what am I to do with my life if I have this monster, chronic fatigue, punishing me for everything I do? How am I going to keep up with study when I find it hard to keep up with this blog and simple things like laundry.
And I don't want to study something that I don't even love. Studying just for the hell of it seems pretty silly to me. I don't want to settle for second or third best, but I'm afraid I'll have to.
I don't have many options. It's already February, so I guess it's time to start looking at what little options I do have. Returning to retail is top of the list right now, but standing for three hours scanning barcodes, and serving customers whilst battling brain fog, feeling faint and fatigued isn't my idea of fun, but I don't think I have much of a choice. The post pain and fatigue from whatever I end up doing isn't appealing either.
Being fragile to begin with, being told to stop doing nothing really got to me. I felt as though I wasn't doing a good enough job. I felt unworthy and worthless. I felt that the effort that I am putting in to try and get myself well isn't acceptable, and so, by the time I got home the water works began.
Cry me a river? I've cried a freakin' ocean.
The past twenty fours hours have seemed like an eternity. I have sobbed on the stairs, I have drowned my sorrows in the shower. I have consoled myself with a huge bowl of icecream and chocolate, and have cried some more. I have saturated my pillow. Heck, I have cried while writing this post. My eyes sting, they are sore and swollen and I can't help but think how unfair this all is.
I am trying to be positive, oh how I am trying, but right now I just need to have a good cry and eat some chocolate.
Right now I just need it to be OK for me to not be OK. I am sad, I don't like my life right now. I don't like feeling dreadfully drugged up. I hate feeling like shit every single day. I hate having stupid illnesses (namely chronic fatigue) that aren't properly understood. I hate feeling pressured and I hate being expected to function like everyone else. I hate going to bed at night exhausted and in pain. I hate waking up in the morning feeling stoned out of my mind. It isn't fair. Oh Lord, it isn't fair.
I hate the fact that driving and attending a twenty minute appointment has me struggling. I hate the fact that brain fog knows no bounds. How am I going to do something this year if I already feel beaten? If I already feel defeated? Throwing myself into something that I'll struggle to cope with or will have to sacrifice so much for is breaking my heart. It's tearing me apart.
I hate that I'm told that the fatigue will get better.... when? WHEN? They've been saying that for the last five years, and that's suppose to make me feel better? And in the meantime I'm just expected to live with it and get on with my life. I hate having debilitating fatigue that not even doctors understand.
Sometimes you just need to have a good cry and eat chocolate....