This Lupus Life

I am the dancer and Lupus is my music. I want to make it look beautiful

Bedrest

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I write to you from my bed, late on a Saturday morning. Usually about this time I am finishing up my first class for the day at the Private Education Centre I work as an Education Assistant at.  About this time I would be documenting progress on student folders, ensuring all stickers had been handed out and preparing drinks for the teachers for morning tea.

But I am not doing this. I am in bed. I only just woke up from a twelve hour sleep which was so deep I barely moved. In fact I could easily find the line on the page in Animal Farm by George Orwell that I had been reading before I fell asleep. Yes I had held the book open all night. My thumb is in pain for it.

I am still in bed because I am recovering from my trip to hospital.

‘A hospital trip?’ You think to yourself.

Yes, I’ve been in hospital again. I have had another anaphylactic-style allergic reaction. Gee I hate that my description of an ‘incident’ is so long winded and ambiguous. Unfortunately I am still working through this particular illness and why it is occurring. The story goes as follows:


7:30pm Thursday 19 March – I walk in to B-Dog’s (my brother/housemate) room and bug him about dinner. I have run out of money and had had a big day and forgot to organise dinner. He promised to buy it for me. Burritos, I like eating them so I’m happy. We get ready and head out.

8:00pm Walk back in to the house. We decided to bring the food back so we could be lazy and watch TV while we eat. Don’t judge please.

8:30pm I go to the bathroom for a shower and to get ready for bed. He is just out of the shower and getting in to bed himself.

8:35pm stomach cramps start. Eyes tingling and itchy. Palms of hands feel hot and itchy. Tops of feet follow soon after. Cheeks start to tingle. I check my lips and eyes in mirror. The water is running in the shower so I turn the hot tap off and walk under it to see what effect it has (by this time I’m guessing the next part of the night but hope that cold water will fix it-crazy but true)

8:45pm I’ve dried, and dressed in comfortable throw away clothes. My satchel is packed for an overnight stay (book, socks, clean underwear, phone charger, eye mask and bus pass). I walk to B-Dogs room, the light is on because he reads in bed. I knock twice.

‘Hey,’ I say through swollen lips and teary eyes. ‘We need to go to hospital.’

‘Is this another one of those things?‘ Comes the reply through the door. He means my allergic reaction.

‘Yep.’ I whimper back. The door opens and he is in his pj’s but getting dressed. Man of action. We are out of the door in less than two minutes. I felt confident this time. The diarrhoea hadn’t set in, I hadn’t had soup for dinner. Maybe this wouldn’t be so bad, we were out of the door quicker and I wasn’t feeling light headed. I was sure we would be at the Emergency Department (3 kilometres down the road) before I was in trouble.

I was wrong. A third of the way in to the trip I started to feel light headed and explosive in my gut.

‘We won’t make it unless you run some red lights.’ I hated to have to say that to him, I know the cost of my words and the risks it meant.

‘We need to stop at HJs.’ I meant Hungry Jacks, which you may know better as Burger King. It was two thirds of the way between our house and the hospital. I was ashamed of how quickly my body betrayed me. But my shame would be worse if we didn’t stop.

Eventually we were on the road and turning in to the new hospital’s new Emergency drive. I had sweated more in five minutes than I did all of the last two weeks (it’s still very hot in Perth.) B-Dog pulled up in the drop off lane, I hobbled in while he parked. We figured it may take a while, like it always does when multiple people are sick in one area of a city.

What a difference a day makes. I am back in #hospital for my mysterious #anaphylactoidreaction. The #injections I received made me the worst patient I've ever been, trying to roam through #EmergencyDepartment without control of my limbs or speech function. I was a little bit #emotional as my brother drove me high speed to #FionaStanleyHospital, his response and help were such #blessings! I was much less controlled after he had left and I waited out the sweats, cramps, swelling and itchy rashes. I was more prepared this time (#thankfully!) Also staying conscious helped until I was admitted. Now to sit and wait for tests and doctors. Bless my excessive required reading for fun and #uni! #9Gag #readingchallenge #bored #unwell #Lupus #lupuslife #SLE #SystemicLupusErythematosus #autoimmune #anaphylaxis #allergy #allergicreaction

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But this hospital is brand new. one month old. How often do you get the opportunity to go to a brand new hospital? Rarely ever. I was admitted two minutes after walking through the front door. B-Dog went home to bed, although I was treated before he even walked in the front door of the house most likely. They gave me a 50mg oral pill of steroids, sat me on a commode (in case) and pulled up my file.

Yes I have a file.

I was actually amazed I had a file. All my illnesses, with dates, was there. All my doctors with contacts. Some of my medicines and some of my past treatments. They even had my private health and medicare details listed. After another 20 minutes they had my canula in and taken a lot of my blood. They replaced the blood with Phenergan, lots of the stuff and lay me on the bed.

Things were hazy from then on. All I recall is that I WAS A BAD PATIENT. Obnoxious in my own quiet way, unresponsive, I could barely speak above a whisper, sporadic fit episodes, desire to walk about the hospital with limbs that couldn’t coordinate to function even at half capacity. They restrained me and had someone sit by me until I passed out completely after about half an hour. I woke up to the breakfast tray in a ward somewhere else in the hospital and a pretty tattooed blond girl asking if I wanted tea or coffee?

The day crept by slowly after that. I tried hard not to listen to the lady next to me in our two-room suite as she discussed her woes with doctors. I tried hard to recall my history accurately to my doctors. I finished my book by mid morning and hated that I hadn’t brought a second book. I tried to get up to date on my sleep and correspondence with friends. I contacted all the people that would need to know I was in hospital.

My room had no TV, that was the only complaint I had from my stay. The staff were amazing. Everything ran like clock work. The food was good and I was able to sustain my coffee addiction. I heard from a doctor that we had one of the best views in the hospital, but the lady between me and that view was having such difficulties I didn’t like to draw back the curtain to see it more clearly. I just sat by the window when she was out.

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Oh, and I slept A LOT. The one great thing about three autoimmune illnesses is that there is no limit to the amount of sleep I need or can get. I was discharged exactly in time for B-Dog to pick me up on his way home from work. We had pasta for tea that night and mused over what might be wrong with me.

I haven’t discussed my health to give you an idea of how in the dark I am about this. What you know is what I know.

Except it’s not a food allergy.

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Author: Chevron Spots

I am in my mid twenties and fighting my battles to discover who I am and where I fit in to this zany, beautiful world. I was diagnosed with Lupus in in 2008. This takes up most of my focus, as I want to share the experience of trying to live with and rise above chronic invisible illness, so to speak. I would like to stress very much the information regarding medications, medical procedures and illnesses are discussed from my point of view, and with my understanding, colloquialisms and metaphors. I do not attempt to be legally and precisely accurate for the general population, rather I try to be emotionally and descriptively true to my experiences. I hope I can help in understanding others with chronic illness by providing one more personal recount of just how spontaneous and difficult these lives really are. One day I hope to visit every continent, climb some pretty high mountains, sleep in an ice cavern, marry a wonderfully understanding man, have children and teach more children. Mostly, I just want a simple life, you know the house with a husband and kids. Oh, and no pain.

8 thoughts on “Bedrest

  1. So sorry and hope you are feeling better soon ❤

    Liked by 1 person

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