Night Terrors

Hi all,

So, I’ll try to keep this short, but do any of you have trouble at night? 

For the last few years I’ve been having hallucinations, night terrors, psychosis… I used to think that I was just really susceptible to nightmares, especially when the depression was bad. But it’s definitely more than just nightmares. 

I tend to have 3 or so specific hallucination scenarios that occur, I’d say 3-4 nights a week. If you’re squeamish, perhaps stop reading now. 
1: Bugs – I’ll see a mass of bugs that look like beetles, coming at me down the walls.

2: Spider type things – Similar to the bugs, they crawl toward my bed, up and down the walls. I’ll see webs and spiders all over.

3: Branches – This is the most vivid one as I feel like I hear things with it. Branches start coming toward me really quickly from the other side of the room as if it’s trying to trap me. 

And last week, I had an absolutely terrifying moment where I ‘heard’ a voice whisper Shhhhh behind my head. I was the only person in my room. 

They are incredibly vivid and incredibly realistic to the point that I’m jolted out of the hallucination through fear and panic and I’m terrified to fall asleep again. 

I don’t ever feel like I get into that true restorative sleep and this just makes my fatigue worse. I can be up between 2 and 6 times a night. Another strange thing is that lets say I get up 5 times in the night, each time I go back to sleep, I’ll have a super intense dream (most are recurring) each time I fall asleep. Once I’m awake, I can recall pretty much everything that happened in those dreams, how I felt, EVERYTHING! And that’s 5 individual dreams that I remember. When I get up in the morning, I feel like I’ve been on a roller coaster of emotions and I don’t feel rested. 

At this point, my doctors aren’t sure if it’s the Lupus, the Fibromyalgia or medication. One thing I will tell you is that it’s terrifying when it happens. I can’t tell you if I’m asleep, on the cusp of sleep, awake, I just don’t know what state I’m in when it happens.

I’ve had brain scans, brain tracing, I’ve had my eyes checked, spoken to a psychologist and we’re still none the wiser.

It’s a situation where I get frightened to sleep because the hallucinating is inevitable. Perhaps I need to go to a sleep clinic!

If anyone else has a similar experience, please feel free to comment below or on the SOL Facebook page!

Thankyou for reading, Incidentally, I’m going to bed now…


What It Means To Be Sick

Hello everyone, I’m back! 

I’m so sorry for leaving you so long, especially those of you who subscribe. I’ve been quite unwell and inbetween I’ve been working and trying to pace and plan. I’ve had a hospital stay, X-Ray’s, an MRI and a few minor health issues for good measure. 

Thanks so much for sticking with me. I’m back with a little blog to ease back into writing. This is a short blog about life with illness and how being sick differs from how you perhaps viewed illness pre – diagnosis. It’s really just a quick summary of my observations of late!

When I was little, being sick was very occasional and also very easy to deal with. When you’re a child, you understand that if you’re sick, you need to rest, to take medicine (if you’re lucky, the sugary strawberry kind) and your mum or dad would take extra special care of you. You also knew that it was temporary and in no time you’d be back to school. Most importantly, when you’re little, there really isn’t a fear that comes with illness. 

But once you get older, things change. 

Here’s how.

1. The medicine is nowhere near as yummy:

I can’t remember exactly what I took the medicine for but I remember that it was always an orange or a strawberry flavour that tasted a bit like liquorice and you could always feel the sugar grains on your teeth! 

I remember the very first time that I was given any medication for Lupus (though neither myself or the doctor knew I had Lupus!) I was given anti inflammatories for joint pain and then a few weeks later, steroids for pericarditis. 8 weeks later, they told me I had Lupus. 

Lupus is incurable but as soon as you’re diagnosed, the medications come hard and fast. The cocktail of medications will vary for each individual patient and it’s extremely likely that you’ll tally up an impressive number of pills and sometimes even intravenous medications.

Medications for Lupus can be pretty brutal, namely chemotherapy. It seems unbelievable that we’re treated with such toxic medications for an illness that can’t be cured. Is it worth it? 

2. You’re responsible for yourself:

Regardless of how much support we have, this illness is happening in your own body. The pain, the fatigue, the anxiety, the fear, everything connected to Lupus is happening to the person with the disease. You’re the person in charge of knowing everything about your medications; what they are, when to and how to take them. 

You have to create a life for yourself that almost revolves around being sick. Pain and sickness occurs whenever it wants to.  It doesn’t care if you work full time, if you’ve planned a holiday, if you’re a parent, wife, whatever. This unwanted diagnosis is constant a saboteur but we and we alone are responsible for the daily fight.

Sometimes the fight gets too hard and all you want is to give up. However, there will always be a reason to keep fighting. For me, I have the responsibility to be strong and brave and to be there for my friends, family and my special little goddaughter who only sees me as Shari, she has absolutely no idea that I’m sick. I fight for them.

3. Explaining sickness is complicated:

Rarely do I tell the truth when someone asks how I’m feeling. It’s just a bit too complicated to say, “I woke up this morning with pain in my legs and was too tired to make it into the lounge. Chest pains began at lunch time and my meds are making me nauseous, I also can’t shift this headache and I’m a bit breathless….”

Another thing that’s hard to explain is the concept of never really getting ‘better’. The perfect example is taking a sick day/week/month from work and upon your return, people thinking that you are better. It’s so hard to explain that with lupus, you never get to 10 on the scale of wellness. 

4. Describing pain and sickness varies. A lot:

Stabbing, crushing, sharp, dull, heavy, tearing, sore, arthritic, bruised, piercing,  achey. Also; nauseaous, irritated, swollen, excruciating, dizzy, tender and the old classic, “I think I’m going to be sick”

5. Your diagnosis can impact things you haven’t even thought of:

Where do I start? Travel insurance, applying for a loan, mortgages, life insurance… companies in particular seem to have a problem accepting people with chronic illness. Even the insurers that claim to specialise in helping ill and disabled people draw the line when met with specific conditions. Premiums skyrocket as someone sat behind a desk decides that you are too much of a risk to be insured. 

6. Illness can change you for the better:

I’ve said in previous posts that although chronic illness is devastating, we’re given a really unique perspective on the world. We are able to appreciate the things that healthy people take for granted. A moment without pain is a moment that we are grateful for and  a day without symptoms is like a holiday! 

We don’t sweat the small stuff, in fact, we’d happily trade the stress of planning a party or finding the perfect outfit over our health issues any day.