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Surviving Each Day


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#1 ToxicWaffle

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Posted 25 February 2013 - 06:19 PM

So, I'm new here. And I actually don't have narcolepsy. But, I do have a disease called Idiopathic Intracranial Hypertension, meaning that for some unknown reason my cerebrospinal fluid pressure is way too high, compressing my brain and the nerves around it. Well, for most people, the most debilitating symptom that comes with this condition is the nasty high pressure headaches. But for me? Fatigue. If fatigue is a word I can use to describe this awful, awful thing that is taking over my life. I know you all know what it feels like, which is why I came here. I've asked around a few different communities for people who struggle with daytime sleepiness/chronic fatigue, so I figured I may as well come here, too.

 

So, I guess what I wanted to ask is, how do you survive in general? What do you do to manage your exhaustion? I know a lot of people with narcolepsy take scheduled naps, but are there other things you do? What do you do if you find yourself drifting off during a time where you really can't afford to be sleeping? What about work or school? What do you do when you're having a rough day, worse than usual? And what would you say has helped you the most, if anything, at coping with your symptoms? 

 

Thanks in advance for your answers. :)



#2 SleepyDays

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Posted 26 February 2013 - 09:10 AM

Hi there and welcome to NN,

 

I'm so sorry to hear you are struggling with fatigue. It's such a struggle to do the every day things and people who don't suffer from it....don't fully understand how it feels....so I can totally understand why you came here to talk about it.

 

Are you able to take stimulants? They are a big help, even though they have some negative side effects.

 

Before I went on stimulants I pushed through the tiredness.I went to university, held down a job etc, etc. At one point I had four jobs at one time! Not because I needed to....but because I was pursuing four things at once! I was a fine gardener, a data analyst, a clinical research assistant and I was teaching a class at a community college. (gosh, it was crazy....but wonderful at the same time!)

 

I was determined to keep going.Looking back now, I'm not sure how I did it.But I think it mostly stems from doing the best with what you've got.And I'm stubborn.I also believe in myself and my ability to accomplish what I set out to do. I guess I could describe it as loving yourself and pushing yourself at the same time.

 

How did I do that.....well, I took care of myself as best as I could, but I also pushed myself to keep going. It's a balancing act. Eat regularly.Keep yourself moving....canoeing, walking, whatever it is you LIKE to do. Choose to do things you enjoy is the key. Pursue things you're sincerely interested in for school, career, hobbies, etc....Don't let yourself get bored.

 

On the other side of that...be gentle with yourself...not all days are the same....if you're having a tired day....change your plans to something that doesn't expend so much energy. I find for myself, it doesn't have to be a nap....even just sitting and reading a book. Or sitting to write an email. Or listening to music or watching a movie.....There are other ways to rest and recharge.

 

To get through university, I took a lower course load than most students.I was still full time, but I took 4 courses per semester rather than 5. This gave me more time to work on projects, have a nap, etc, etc. It also helped to relieve the stress of too much going on at once.

 

I work at a computer most days now. I found I had to have a job that kept me thinking and engaged, but that wasn't super stressful. Find something where things change a lot, not in a stressful way, but in an interesting way. Tips to stay awake at work: drink sips of water or tea or eat something crunchy like celery or carrots, chew gum, call someone on the phone, put on the radio, get up and walk to a bathroom on the other side of the building, do some stretches, go for a walk outside, go talk to a co-worker. It only takes a couple minutes and it helps to break up the day. Keep the temperature of the room a bit cooler, if you are able to. Hot=sleepy.

 

All that said...I have to say that there has always been a limit to what I could accomplish outside of a workday. I gave the best part of myself to the 9-5.There wasn't a lot of energy left over at the end of the day. But I accepted that. And I worked around it. So...for example, I normally wouldn't visit friends on weekday evenings, but kept it for the weekends. I would do relaxing things in the evening after work to re-charge...like read a book, watch a movie, etc, etc.

 

I've been on the stimulants (Ritalin) for approximately 8 months now. It isn't perfect, by any means. And it took me several months to get used to it....especially the focusing effect of the Ritalin. But what I like about - I don't have to FIND the energy to keep going. So that part of my life that was spent pushing myself just to get going every day has been taken care of. So...for example, without the stimulants, I would wake up and drag myself out of bed. I would medicate with caffeine and have a shower to wake me up. By the time I left the house to head out to work....I was exhausted....and I hadn't even started my commute to work...not to mention work 8 hours and then commute home, make dinner, etc, etc. It was like walking around with lead weights on my legs. A lot of my day was spent pushing to get past that tiredness PLUS do all the normal daily things. Now, I get up, take my medication and within an hour I "feel" awake. I leave the house ready to start the day, not tired and draggy like I used to be. I still use all my stay awake tips above....but I actually have energy in the evenings now to socialize, work on hobbies, take an evening course etc, etc. The meds aren't perfect....but they help alot. I compare them to riding an electric assist bicycle.....you still peddle the bike yourself but when you get to a big hill you have the electric assist to give you a boost to get over it.



#3 Megssosleepy

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Posted 26 February 2013 - 03:25 PM

Sleepy Days,

 

I couldn't agree more about everything you wrote above.  Once again I wish we had a "Like"  button! 

 

Thank you!



#4 sk8aplexy

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Posted 26 February 2013 - 04:15 PM

Wow, Toxic Waffle.  That diagnosis sounds rough, I feel for you, and I hope you are content to some extent and able to manage it perhaps well...

May I ask; how it was discovered and by what sort of Doctor?

 

I have both Narcolepsy with Cataplexy and what is called Idiopathic Central Sleep Apnea (which I think relates somehow directly to the Nw/C)...

Was told "the brains of persons with Narcolepsy actually function different from the average person/s"; by a top notch Neuro at a world re-known clinic. 

Such was obvious, to me and for me, in my own mind already.  No diagnosis had been made till age 30, and my Mother recently acknowledged that she remembered as an infant I'd stop reacting to being tickled, and would just stare off into no where.  As a kid, my arms would not respond, when being tickled and around 20 I began collapsing or becoming very weak when pleasure struck, laughing/joking/silly-ness typically triggering such.

The MRI's all came back 'normal' (whatever that means?  I can't begin to believe such a thing actually exist) , yet there was all sorts of wording within; regarding cervical disc degeneration and developmental, and more.  The comment above by the Neuro was their response to me, and that something seems perhaps musculo-skeletal...

 

Always have had serious headaches which feel like my brain is swelling, throbbing, bulging, like waves of ache squeezing around my entire head; usually radiating from either my eye balls back down into my neck and shoulder/s or vice versa.  Too much heat and/or sun, over excersion, or just allergy-like sensitivities (perfumes and/or certain strong smells, cigarette smoke) all can trigger such; even juices - sugars likely...

-Icing my neck and/or head, eye/s, helps with the headaches; I used to take tylenol/advil/alleve/excedrin and more, but it all began to just cause rebound headaches later and sometimes worse.  Anymore, it is rare that I'll take such, unless things are long.  Some headaches I've had have lasted days, and in a fierce 'come and go' manner.  I've had times where I'm so used to having a dull headache that when it eventually dissipates, it is shocking like to not have it.

 

-I take it all day to day.   Meds = none; because they've only worsened matters, be it this or that.  Taking Vitamin D and Fish Oil, 16oz Coffee,  plus a lot of food (medicine) ingredients like Lemon, Turmeric plus many other Indian spices, Cinnamon, Cocoa, Mushrooms of all sorts and also all sorts of herbs.

-Recognition and understanding seem to have helped tremendously, yet just to a point; being able to note something for what it may actually be and/or relate to, rather than just letting it occur without being able to connect it with anything.

-Paying close attention, as much as I can comfortably, to myself and the atmosphere/s or environment/s which I go in, has helped with the above.

-Following a pretty 'normal' routine and schedule, nothing too strict but keeping things in order basically, has helped to a point.  That really is just, trying to both go to sleep and awaken, within the same couple of hour/s span day to day (falling asleep between 11pm-1am and awakening between 9am-10am).  Allowing myself to go out of that now and then but, really trying to not nap at a point that will throw that off.

-Eating in a similar way -schedule wise.-  Also, cooking around 90% of what I do eat, going both Gluten-Free and 'mostly' Dairy-Free; has been hugely beneficial.  Doesn't appear that I'm necessarily allergic to Gluten, nor dairy, it just seems the food tends to either be of a higher quality and/or simply with less 'refined/processed/additive'd' substances (which just make things cheaper and/or longer lasting).  So much inflammation seems to have left; yet unfortunately, such may now just present itself in different manners and/or ways, here and/or there...

-The above has helped the fatigue, perhaps sort of return to tiredness.  For years, prior to discovering what it was going on, fatigue had plagued me.  Also, I see an awesome Korean D.O. who does both Accupuncture and Cupping, which along with the diet now for around 8 months, have done wonders.

-Stress and anxieties can severely effect my stability (not to do with walking), so I try hard to avoid them.  This is basically, being best friends with a computer and not socializing hardly, only in comfortable places and not out in public hardly. 

-Having a career has never been manageable for me, yet I tried so hard and when it seemed to be approaching the Cataplexy interfered.  If the right thing appeared itself somehow, only 'perhaps' could I manage; and such doesn't seem likely either way. 

-Being thankful for what I do have and knowing things can be, and are worse for many others, helps me.  Really just paying a lot of attention to whatever I'm interested in, yet trying to stay in a safe boundaries at all times, and remembering that alone by just being within the comfort of what is still so much 1st world versus 3rd world; helps me get by...

 

The best of luck to you Sir.  And, don't hesitate to ask anything.