Queen of Sleep

Living with narcolepsy: a personal journey

Posts Tagged ‘cataplexy

Laughing – a complicated pleasure

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A few days ago, I really let myself go and laughed as much as could. I haven’t laughed like that for years, partly due to fear of loosing control of my body and partly because the electrical currents that roam around my brain hurt. It’s difficult to explain because it doesn’t feel like pain, perhaps more like a medium pained cramp and then it makes you absolutely exhausted. I am taking medication that is supposed to control cataplexy but it doesn’t so do it so well so I simply avoid genuine laughing, frustration, anger, centre of attention /surprise situations. In social situations, I don’t even think about it anymore – sometimes I just walk away, sit down or my speech gets slurred. People don’t tend to notice. My body reacts so violently internally on external stimuli and it’s hardly visible on the outside. Occasionally, it makes me feel strange – to carry around this burden (hidden disability) because so much in our contemporary culture exists on the surface.
Except from one or two, a majority of my friends have no idea how funny I can be. I would die of laughter ūüėČ if I didn’t practise self-restraint! I don’t have to vocalise my sense of humour to trigger an attack. It’s enough just thinking about it. Yes, I have had to learn to control my thoughts – how? I can hear you ask. Stop your mind racing – don’t think of anything. Or if something is triggering cataplexy think of the direct opposite. Not just think the thought – you have to feel and live the opposite thought so your brain registers it as reality. It helps me sometimes when I am in public places and I can feel my muscles start to weaken.
Anyway, so two days ago I had a friend over and I laughed hard for at least 30 minutes. I had to sit/lay in my bed because otherwise I wouldn’t have been safe. Laughing, having attack after attack after attack, then back to talking, laughing, more laughing and then attack attack laughing attack…. I got completely exhausted and my brain was hurting¬† but it was worth it. I was elated and deliriously happy in a way I haven’t experienced for years.


Written by Queen of Sleep

June 29, 2011 at 10:26 pm

Campaigners warn over incapacity benefit changes

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BBC News – Campaigners warn over incapacity benefit changes.This report is not a day too late. I have to go to attend an interview every 6month-1 year. It might not be very often but I associate the whole experience with extreme stress. Atos Medical Care Team as “professionals” who do not listen and the whole process normally sets back my progress with 3-6months.The more I attend the interviews the more I find out. This time I found that you can ask to be seen by a female or male doctor. I asked for a female doctor as they in general (in my case) have better communication skills and it helps me remain reasonably calm i.e. I don’t get a cataplexy or panic attack.

The form does not fit narcolepsy so it’s impossible to fill in. The doctors do not read the material from experts that I bring with me. In general, I doesn’t seem to matter what a specialist doctor or professor recommends because as long as you can lift your arm and hear from one end of the room you are able to work. I am not surprised that people are stressed. And yet I understand that the government is trying to get people back into work but is this really the way forward? Especially for people with mental health issues? I have spent time with the local mental health service – whilst they were trying to figure out if I had a mental health problem (how funny!). Everybody knows that lack of sleep will bring on hallucinations and living with narcolepsy is often extremely stressful and in itself can potentially push you towards an unstable mental health. Especially in a situation where (Atos interview) you are ignored and treated as if you were a number in a queue. Unfortunately, it’s always the people that are in most need that will suffer the most and the people that know how to¬† “work the system” that will manage.

The Guardian is also headlining the topic: Mental health experts warn against pace of incapacity benefit cuts, whereas The Times writes about elderly care and the Daily Telegraph covers E.coli and cucumbers.

Check out  The Somnus T-Shirt. It measures sleep patterns.

Wish you all a lovely morning and a lovely summer!

Written by Queen of Sleep

June 1, 2011 at 8:20 am

Learning to Balance Routines and Spring Sunshine

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The hyacinth gives off a lovely stimulating scent - perfect to help you wake up or focus.

It makes me so happy to see sun (spring) arrive and with summer¬† around the corner I feel “invincible”. The increased hours of sunshine makes a lot of difference to energy levels and to be perfectly honest I have been getting so carried away that some of my routines have slipped. I didn’t notice it at first but quite soon it became apparent that the quality of my sleep started to deteriorate. The last week has been really tough because I have only been able to “sleep” (to my knowledge) 1,5 hours maximum at a time and my body has starting to ache again. I started to¬† overestimate how much energy I have available over X amount of time. I also have been drinking coffee, diet coke and eating sweets and cakes.¬† I started to get so distracted by socialising¬† that my gym routine fell away.

It’s pretty clear that once the (healthy) routines are tinkered with, it affects the quality of sleep at night and from there the snow ball just gets larger and larger…I am, however,¬† not going back. Yesterday, I said goodbye to a friend at the train station and I realised straight away that I couldn’t be around crowds of people because the cataplexy electricity surged around badly in my head so that it felt as if I had mini explosions going off in my head every 2-3 minutes. I knew I shouldn’t have left the house yesterday (but I refuse to let it take over my life).

Diet CokeIt makes me cross that I have to reduce my coffee consumption. It’s easy for me not to drink. I don’t smoke and I am not into drugs. I love coffee. Decaf¬† is not at all an option, it tastes funny. I rather not drink coffee at all.

Right now, action and effort is required to get me back on track! Have realistic goals and start lightly to make lasting changes. I think that no coffee and no Diet coke (this is so bad for me! – I might even write a post on just HOW evil Diet Coke is – to get myself motivated) after 6pm, is a good start.

Written by Queen of Sleep

May 25, 2011 at 10:57 am

38 Degrees | Tell your MP to protect the NHS

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All of who live in the UK and care about the NHS follow the link below and tell your MP that you are NOT happy about the proposed changes to our National Health Service. All you need to do is watch Michael Moore’s Sicko to understand how lucky we are to have access to such amazing health care!

38 Degrees | Tell your MP to protect the NHS.

Written by Queen of Sleep

April 1, 2011 at 3:20 pm

Are you Narcoleptic or A Person with Narcolepsy?

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Sleeping girl

Tonight, while editing the about me page on¬† Queen of Sleep, I realised that I had used the word narcoleptic when describing “a person with narcolepsy”. I quickly browsed through some older posts to see if it had crept in elsewhere in my blog. It had. So why, all of a sudden I am worried about using this word?

A few weeks ago, I was sitting in a cafe discussing topics relating to narcolepsy with a friend when he out of the blue asked me if I minded being called a “narcoleptic”. I replied at the time that I didn’t really mind, had never really thought about it, but in general preferred “person with narcolepsy”. He asked me because his daughter (a teenager with narcolepsy) had expressed a clear dislike to being called a narcoleptic. Perhaps the reason why I hadn’t really thought about it was¬† because I am a non native English speaker/reader/writer etc. and sometimes I miss out on nuances in language. Even if I translate, I don’t know if I would have picked up on it. The issue seems to be entirely personal and political.

Narcoleptic defines the person with narcolepsy as a person who is defined by the condition whereas a person with narcolepsy puts the emphasis on the importance of seeing the person first and secondly the condition.

I am sure some people would continue to argue that “I have always described myself as a narcoleptic and I will continue to do so. I don’t care about being politically correct – It always changes anyway”, or similar.¬† The main reason for using “person with narcolepsy” is not¬† because it can come across as discriminative alternatively politically incorrect – it’s simply incorrect usage of English. A person cannot be narcoleptic because a person cannot be described using a medical condition. A person can have narcolepsy – a person can have cataplexy but cannot be narcoleptic or cataplectic. Only attacks or episodes are narcoleptic/cataplectic.


Written by Queen of Sleep

March 25, 2011 at 12:08 am

Laugh more Live more

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An extremely chatty and humorous friend is currently staying with me.¬† How do you stop someone being funny when you’re laughing so much it makes your knees weak? I love her sense of humour and spending time with her makes me more awake and alive because she is running her life on warp speed. Some people might find it exhausting but I think that together we achieve a good balance.

Yesterday, she made me laugh so much I almost collapsed on the street. I can’t ask for help because I can’t speak. All I can do is attempting to focus on something else, something really sad (usually works) and most of the time the cataplexy will withdraw. It travels from the back of my head, to the jaw and down towards my arms. At this point I have a few seconds to find a chair – if there is none within my immediate surrounding, I try to lean on a table or a wall. Then my leg muscles disappear and I will either slide down the wall or crash. In some cases I can use my legs as poles and lean onto¬† wall. It might work if the attack is short. If¬† it is a repetitive attack, I become defenseless. Yesterday, my legs went but I was lucky there was a road blocker on the pavement and I held onto that until my friend realised what was happening and came to my rescue. She held me for 5 minutes as I tried to recover as fast as I could. The whole episode makes me feel incredibly vulnerable but I am not in the slightest frightened. I only feel experience a level of fear if I am all alone and it happens out in public which is incredibly rare. When I am on my own minding my own business, I don’t get into discussions or dialogues with people who have the potential to trigger an attack. I have to admit, I do get annoyed from time to time by mundane occurences but I just leave the situation behind as quickly as I can and steer my thinking into another direction. 90% of all cataplexy attacks are triggered by people who are close friends of mine, people I genuinely care about and that I keep close to my heart. The medication, a regular lifestyle and sleep pattern helps but not all the time. What can I say I have some really amazingly entertaining and caring friends and family and I would rather continue to have attack after attack than to ever even consider replacing them.

Laugh More Live More

Laugh More Live More

Written by Queen of Sleep

February 2, 2011 at 8:16 pm

Healthy Anger?

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A few days I ago I wrote about my inability to express anger and how I recently have been able get properly angry and stand up for myself when I feel that others are being disrespectful. If the person who was disrespectful was someone close I would just cry or I would get so surprised/defend the other person (in my mind), give them reasons to why they behave like they did and just take it or simply walk away.  Now, I pick my battles and let it flow over me like oil on water.

My therapist told me that anger is the most misunderstood of all the emotions, and that anger in its essence is not bad. I always thought anger was really bad and a sign of weakness, an inability to control one’s emotions. To be on the receiving end of someone’s anger is certainly not a pleasurable experience and it feels like a verbal and physical attack. Anger involving abuse is obviously never a good thing but anger that motivates, focuses and helps you to move forward can be brilliant qualities to possess.

Resolve your anger_Whilst I was researching anger I found an article in a supplement called YOU from the 23/01/2011. I am afraid I don‚Äôt know which paper it’s supplementing which probably means one of the conservatives ones (ha-ha).

The article is called ‚ÄėSteps to Anger Management‚Äô and basically is an extract from a book called: ‚ÄėResolve your Differences: Seven Steps to Dealing with Conflict in your Relationship‚Äô by Andrew G Marshall. It will be published on the 7th of February by Bloomsbury at 6.99 pounds.

The article lists all the negatives forms of angers such as: sudden anger, habitual anger, shame-based anger, paranoid anger, deliberate anger and moral anger.

It helps you recognise behaviour and how to deal with the different types of anger.

Towards the end a small column is dedicated to: Healthy Anger. What is interesting here is that marital therapist Andrew G Marshall does not show us how anger can be used in a positive way. Perhaps that was not the purpose here, after all, the book deals with relationship and anger and not personal development and anger. Still, I feel that for a relationship to function and develop each party has to go through, will go through voluntary or not aspects of personal development (it’s a bit difficult to get away from life and experiences) and the implications that comes with supporting each other during, potentially uneven, personal and relationship growth.

The marital therapist advises us to stick within these parameters in order to reap the positive benefits of anger:

1.     Your anger is treated as a signal that there is a problem that needs to be addressed

2.     It is expressed in moderation

3.     The goal is to solve problems rather than just express the anger or let off steam.

4.¬†¬†¬†¬† You take responsibility for the anger, I am angry because‚Ķ‚Äôrather than ‚ÄėYou are making me angry‚Äô.‚Äô

5.     You express the anger in clear ways, so that your partner can respond accordingly.

6.     You let go of the anger once the problem has been solved.

It‚Äôs not always easy to solve the problem that once made you angry which gives you two options. Either you keep the anger inside of you and add it to the already filled to the brim container of kept anger or you let go of the whole thing. It is easier said than done to let go but I always find it useful to use my body in helping to shed the anger for example take a walk, go to the gym, meditate or create a personal ‚Äúlet go‚ÄĚ ritual to carry out in private.

Written by Queen of Sleep

January 28, 2011 at 11:47 pm