There’s been better days. Diary entry: Thursday 20th July.

I've been dealing with a headache for around 4 days now. It seems to change in intensity throughout the day, going from what I'd call mild to intense and sometimes it's just a pressure headache – like my brain is expanding or someone has my head in a vice. I've talked about those headaches in past posts, I call them Red Queen headaches because the Red Queen has a massive head and that's what it feels like.

This past week has been a struggle with fatigue. I'm always tired but the last few days I've been asking myself "is 7pm really to early to go to bed?". My evenings have literally been spent clock watching. I mean, I really should just go to bed when I feel I need to. My body clock is already all over the place so I don't want to mess it up more. Either way I can't win, the end result will always be the same: tired.

I woke up today feeling generally okay, well, as best as I could but things went downhill pretty quickly. I'd say within in an hour or two of waking up I started flaring. This is what I dislike the most about this illness – it changes with no warning, you think "today feels like it's going to be alright" then the next thing you know, you're curled up in a ball on the sofa wondering where your 'alright' day went.

It started with a throbbing pain in my right knee, the throb was accompanied with a sharp pain. Then it quickly went to both elbows, the only pain I really get in my elbows is a sharp pain and the pain travels down my forearm like electric shocks. It's very typical of my knees and elbows to hurt, it's the joints my Lupus affects the most. Pain in my shoulders is less common, but today I had the worst pain in my right shoulder. It was a burning sensation mixed with a sharp pain, it started so suddenly and out of nowhere (like nearly everything this illness throws at you). It was the burning sensation that made it unbearable, fortunately the sensation didn't last long but the sharp pain decided to stay for the day. It's also sending a dull ache down my upper arm. So today, my full right arm has been affected – not so helpful when you're right handed!

I was sitting waiting to see if any of the pain would subside but nope. It wasn't letting up and I couldn't sit in pain any longer so today has been a codeine day, which I'm sure my headache will thank me for later. And by that I mean, I'll probably wake up with a blistering headache tomorrow, what's new? I'm due another dose in an hour and a half and it can't come quick enough. It's helping but not fully, it's just taking the edge off it all.

It still mind boggles me how any part of my body will start hurting, it's as quick as turning on a switch. Some parts of my body hurt briefly, like the soles of my feet but then it'll move to my legs or fingers. Although I'm writing about my joints, because those are the areas that have consistently hurt, nearly my whole body has been affected today. It just gets tiresome when there seems to be no break from pain.

I spent the day curled up on the sofa with
a blanket and my dogs in a codeine haze, having little cat naps and drinking tea…all whilst trying to get my head around the new season of Orphan Black…that's not a show you should watch whilst on codeine.

What a day! There's always tomorrow. As always, thank you for reading xo

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From the outside looking in

What do you see? I know what you see, you see someone who works full time, probably goes to the gym after work and then goes socialising. 

Appearances are decieving. That girl was medically resigned from her job, she doesn’t have a gym membership and she doesn’t socialise all that much. That girl has a disease that, to put it frank, can kill her if it wanted too. That girl has heard her mother say the words “it frightens me” because she doesn’t know if tomorrow, her daughters organs will shut down or if tomorrow she will race against time to get her to a hospital in time due to a blood clot or internal bleeding. 

The point of this post is because some people don’t take it seriously because I look just like my peers. Have you ever been in a situation where you said “I feel so unwell” and a colleague/friend/family members replied “you’re fine” do you remember how annoyed you were? Because you feel so unwell but somebody just told you “you’re fine“? It’s annoying isn’t it. Imagine going through that every single day of your life, because well, you look just fine. 

I have people close to me who think just that. They believe I should go out to work, do more and socialise more. And the truth is, I physically can’t do it. I just can’t. I wish I could, I wish I could step back in time for just a day to be the old me but I can’t. This new version of Emily looks just like the old one, people can’t wrap their head around that and that’s why they believe I should do all of the above. But, unfortunately she’s long gone and I highly doubt she will return. 

Explaining how Lupus feels is extremely difficult, some days I can compare it to a sickness bug, but there’s days I can’t compare it to anything. I can describe some symptoms, for example, my head today feels like someone has repeatedly swung a pan around it. But, for the most part it’s too difficult to describe, it’s such a unique illness to each sufferer and affects everyone differently. The levels of pain are different, sometimes it’s dull, sharp, throbbing or a mixture and sometimes it’s an unexplainable pain that even I can’t detect what kind of pain it is – it just hurts. 

Lupus opens you up to a new kind of loneliness. Although I have stated that my father and I share the same illnesses, we feel it differently. There is nobody around me who feels the exact same. I’m surrounded by ‘normal‘ people who say “they understand” and I appreciate the support but they don’t. I’m sorry if that sounds ungrateful and blunt, but that’s the truth. It’s like saying to an amputee “I understand”. 

It does nothing but anger me when I see people judging me. You can’t judge someone based on appearances or how they act. Yes, you see me smile but you’re also seeing me smile through pain. Yes, you see me out of the house, but I can’t stay confined to the same four walls 24/7 and when you see me, I’m still in pain. You’re looking at my life from the outside, you don’t see me curled up crying because I don’t think I can take anymore. You don’t see the dark cloud that’s constantly above my head. Although I say “it’s okay, I’m okay” quite regularly, I’m not okay. I have fears, in fact I have regular fears that something terrible is going to happen to me. I hand on my heart firmly believe I won’t live to a grand old age…there has been nights that I have had such high anxiety over the pain I was feeling that I thought if I went to sleep I wouldn’t wake up so I stayed awake all night. 

That’s the harsh reality of my disease, so please, do not judge me based on how I look or because I’ve had Lupus for nearly two years so I should be back to my normal self by now.

“There’s nothing wrong with enjoying looking at the surface of the ocean itself, except that when you finally see what goes on underwater,you realize that you’ve been missing the whole point of the ocean. Staying on the surface all the time is like going to the circus and staring at the outside of the tent.” – Dave Barry.