it’s my birthday and i’ll sleep if i want to.

Yes, it’s my birthday tomorrow! I plan on taking it easy in preparation for my jam packed evening. Going to see a band called The Brian Jonestown Massacre then on to a live surf music night, so I need to conserve as much energy as possible during the day. Will let you know how it all goes in a few days, after I’ve spent most of time recovering in bed! I find it okay staying out late every once in a while but can’t handle late nights too often. I pay for it in sleep the next day.

I’ve got a few updates:

– I’ve finally got an appointment with a neurologist who specialises in Narcolepsy and Cataplexy at a hospital much closer to where I live. No surprise when they told me the earliest appointment was end of September! They’ve had a cancellation so now have an appointment end of July which is so much better. I’ve been going through the whole referral process from one hospital to another since January and somehow I managed to slip through a gap so it was only last week I was put on their system. Hoping to get my meds sorted pronto before my Cataplexy gets any worse. The Venlafaxine that I take has absolutely no effect on my C but gives me nasty side effects especially when increasing/decreasing dosage or if I forget to take it one day. I was reminded of this recently when I ran out of pills and couldn’t get more for 3 days. The first day was fine, minor trembly hands but nothing else. Day 2 I felt spaced out, dizzy, queasy, headaches, teeth chattering with intermitted jaw clenching and general body shakes which worsened as the day progressed. Oh and not forgetting the rapid onset of cold sweats, shakes and itchiness together with the feeling of wanting to take your own skin off. Tears were streaming uncontrollably down my face. I don’t know if it was out of stress, frustration or something but I didn’t feel like there was anything to cry about at the time. It’s a feeling of total discomfort and almost unbearable not being able to do anything about it.  I don’t even know what I should do in that situation – I was sipping on cold ginger beer as ginger helps settle an uneasy stomach but other than that, I just rode it out for a few hours. I was able to start the pills the next afternoon. I took a half does to ease back into it. I feel about back to normal now but still want to get off these drugs because I’m not getting anything beneficial out of them, only bad stuff.

– I had a wonderfully productive day yesterday or the day before (well, productive for me anyway). I collected my medicine, folded and put away clean laundry, made a hospital appointment and defrosted my freezer! In between each of these tasks there was of course the inevitable napping but I still managed to get things done.

– My ESA has come through and thankfully backdated to March. I celebrated this moment by paying the water bill! Woo Hoo!

 

Inky self portrait

 

quick update

Thought I’d post this little update while I still remember!

It looks worse than it is.

 

I get so many flies in my flat it drives me mad. The were about 50 flies just swarming in the middle of my living room – when I say ‘the middle’ of the room, I mean the whole room because it’s only small! I was trying to swat them away with a tea towel but I was so frustrated and maddened by them that I had a Cataplectic attack. It’s was only my legs that buckled, so I could still open my eyes and move my arms about. Being able to move your arms really helps if you’re falling, (obvious I know, but often a life saver for me!) it means I can prevent hitting my head or causing a worse injury.

 

I’m still not totally sure what bruised my shin or what I cut myself on as there were no sharp table corners or anything nearby. The only thing I can think of is that I was holding scissors because I remember using them at some point that day. My short term memory is horrendous! My cut is pretty cool though, it looks like something you’d see in a comic book. So that’s a bonus I suppose!

another month. another black eye.

Sorry for my long blog silence. What can I say, I’m a sleepy person! I had a little tumble a couple of weeks ago from Cataplexy but didn’t get round to blogging it when it happened. So here it is, just a bit late!

June black eye

I was in the flat alone (boyfriend was in London playing a gig with his band) and needed to go to the shop. I planned my journey so as most of it was on the bus and minimum walking time so I had less chance of falling. It’s only a few minutes on the bus but I have a national bus pass which allows me to travel for free on any local bus service in England, even London! I’ve tried to take advantage of my pass to get me out the house, even if the whole time I stay on the bus. It’s better than sitting at home doing nothing! Anyway, back to the story. I got on the bus at the bottom of my road, then only had to walk about 30 yards to the shop. On my way back to the bus stop I felt a sudden stabbing pain in my back – it had started a few days before, went to the doctor last week who said it was sprained ribs/pinched nerve. I was prescribed some wonderfully strong painkillers and my back has been feeling much better recently. The pain only lasted a second but it was like a 9/10 on the pain scale. My head dropped forward while my legs buckled and my arms melted. It was more of a flop than a hard fall so I didn’t hurt myself too badly this time. Only a small bruise under my eye that healed completely within a fortnight! I have learnt that pain is now also a trigger for my Cataplexy, along side anger, surprise and sadness. Fortunately laughter hasn’t been a trigger for a couple of years now, thank god! Here’s a collection of my recent inky artworks. I never used to enjoy doing portraits so haven’t done one in years, but I thought faces would lend themselves nicely to my ink style. Check it out below:      

Portrait of a friend

Portrait of another friend. This one is more terrifying, similar to what I see during Sleep Paralysis.

 

Same person, different result

out and about

I had a lovely, unplanned evening recently. My boyfriend had a spare ticket to see The Sonics because a friend couldn’t make it and asked if I would like to go with him. Obviously I really wanted to go but wasn’t sure if I would have the energy as I was having a particularly sleepy day. I’m not very good with big last minute changes to my evening like this because I plan my day around naps and need more naps if I’m doing things. I was relieved to find that we had arrived as the band were taking the stage so I didn’t have to stand around waiting. I felt so tired after the first few songs that I was starting to think I’d have to go home early. Fortunately, I found a fold up chair just to the side of the crowd. I could still see the top of the guitarist’s head whilst sitting so it was alright!

I stood for the last few songs, then we headed to the beach because I wasn’t feeling especially tired and wanted to make the most of that feeling. My boyfriend and I edged our way along the groyne where the pebbles meet the sea. The sea was calm, the moon shone brightly on the water and the air was mild. We lay there for a bit and I managed to sneak in a quick snooze!

I had a wonderful evening that didn’t consist of staying in watching films because I don’t usually have the energy for anything else. It was a nice change.

I’ve also been messing around with inks and water recently. Spending time dabbing ink on wet paper seems to make me happy and helps for de-stressing. Now that I’m doing it a little bit every day, I’ve noticed a boost in my general mood and motivation and my boyfriend has too. Check out some of my inky creations below.

I’m pleased to have learnt from the other night that it is possible to adapt to last minute plans and sometimes you can get Narcolepsy to fit as best you can around the things that you want to do. (I did spend most of the next day sleeping though!)

 

scars add character.

 

So last week my social worker came over to help me with another load of forms for ESA (which still hasn’t come through!). It took longer than I thought, so I was late in taking my afternoon nap. I get hallucinations because of my Narcolepsy and they tend to get worse when I’m especially tired. I was in the bathroom, home alone as my boyfriend was still at work, and I could have sworn I heard knocking on the bathroom door. It definitely wasn’t the front door so I freaked out. Cataplexy kicked in and my knees buckled, causing me to collapse to the floor, smacking my face on the sink on my way down. I felt a sharp stabbing pain in my cheekbone that spread as a throbbing ache through my skull. I’ve got an absolute corker of a black eye now!

I get so many looks from people in the street but I’ve had so many bruises and scrapes on my face, I’ve got used to it now. This is my fourth black eye this year – one every month since January! All Cataplexy related I might add. I do feel sorry for my boyfriend though; he gets some disapproving looks from strangers when they see my eye. I know as humans we’re naturally curious but some people are just rude and stare for way too long.

Here are some more photos of injuries I’ve had from Cataplexy in the last 18 months.

 

 September 2012 hit my nose on a metal shelf in a pub. 3 stitches, two of which I had to take out myself.

 March 2013 Cataplexy from not seeing a car as I was crossing the road. Just a scraped cheek.

April 2013 Broken wrist falling from car horn. Fractured two knuckles on my other hand the week later. I was waiting to get my cast changed in a minor injuries unit when a nurse came round the corner quickly, gave me a shock so I collapsed. She then ran over my hand with a man on a wheelie bed. The same nurse did a shit job at changing my cast (didn’t even know how to use the machine to take the old one off) and had to go to a larger hospital to get it fixed!

 

September 2013: Bizarrely, an identical deep cut on my nose over the first scar and it happened exactly a year before, almost to the day! Cataplexed from an alarm in the supermarket, ambulance was called. I can’t move or talk when I have a cataplectic attack, so I couldn’t tell them I was ok and would be sitting upright in a minute. I felt awful for getting the paramedics over unnecessarily and leaving a pool of blood on the shop floor. No stitches this time, only tape to hold it together as it started to heal.

March 2014: There was a fuck up with the delivery of my meds for EDS so I was practically in a coma for 4 days. Tripped purely due to tiredness! This photo was taken about an hour after it happened.

April 2014: This is my eye a week later, loads of lovely greens round the side but healing nicely!

 

bothersome forms.

I wish I was able to work so I wouldn’t have to deal with the whole benefits system. I’ve had so much hassle with it all lately.

I started receiving Disability Living Allowance (DLA) last year, when I had to stop studying at university. I don’t think uni was really for me anyway so that didn’t bother me too much.
So, I was surprised to find out that my DLA stopped in February because I hadn’t received a renewal pack in the post. I moved house in September and didn’t think to tell the DWP (Department of Work and Pensions) straight away. And of course, it had to be September when they sent out the renewal letter.

I’ve had to make a new claim for Personal Independence Payments (PIP) which is gradually replacing DLA as of last year. These forms are a total nightmare and always take ages to go through the system (often months) so I’m without money at the moment. As you can imagine, I’m not exactly over the moon. I know it’s worth it in the end but I hate filling out these kind of forms because the thickness of the wad of paper is so daunting and all the answers require so much detail. Fortunately, I now have a lovely social worker who comes to my flat to help me with forms and other things I tend to put off!

I applied only a month ago for Employment Support Allowance (ESA) because at the beginning of my DLA no one told me I was eligible for it. I had a letter at the start of the week saying my claim has been successful so really hoping that money will come through soon.

Hopefully my luck will change and you’ll be reading a brighter blog post with a lot less moaning!

 

hello.

I’m a 20 year old girl and I was diagnosed with Narcolepsy and Cataplexy nearly 4 years ago. Although I’ve lived with this condition for a while, I haven’t got all my symptoms under control or to a manageable state yet. I’m still adapting to my new life with Narcolepsy and I do sometimes get frustrated and upset about it, but I’m trying to not let it take over my life and stop me doing what I love doing. I don’t want to spend the rest of my life under the covers.

My symptoms started about 6 months before my diagnosis, when I was suffering from Glandular Fever. A major symptom was Excessive Daytime Sleepiness, which I never really got over even after I had recovered from GF. I also started feeling weakness in my muscles and knees buckling when I laughed, got excited or angry. This was the start of Cataplexy. This has been the most debilitating, frustrating, scary symptom, and the most harmful to my body and social life. It was tough finishing school with all this going on and not knowing the cause of my sleepiness or collapses.

Cataplexy, for me now, is when I get a surprise/shock, upset, angry or scared my whole body collapses and I am unable to move but I can still hear and feel everything going on around me. I recover naturally after a few seconds to a couple of minutes. Sometimes it just affects my face, head and neck or just my arms or legs. The thought of having a Cataplectic attack outside makes me so anxious that I don’t like to leave the house on my own, for fear of falling and hurting myself. I’ve had so many injuries caused by falling from Cataplexy it looks like I’ve taken up boxing or enjoy the odd bit of fighting in the street.

I currently take 200mg of Modafinil twice a day for EDS and 300mg of Venlafaxine after breakfast for Cataplexy. The modafinil has really helped so I don’t get sleep attacks anymore, I only fall asleep if I’m sat down and not engaging in anything. I have a 30min nap every day after about 4 hours of being awake. I haven’t been successful in finding any medication that even slightly reduces my Cataplexy. I’m in the process of being referred to a different hospital to see a better neurologist (hopefully!) so I want to talk to them about starting a drug called Xyrem to help with my Cataplexy.

So that’s where I’m at now. This blog will be like a journal of my ups and downs living with Narcolepsy and Cataplexy.