I NaNo, you NaNo, we all NaNo. Okay, so NaNo is not exactly a verb, in reality it is an acronym for National Novel Writing Month (NaNoWriMo or NaNo for short), but it should be. Once a year for the past ten years, people across the world come together to write 50,000 words in 30 days. I am also one of those crazy individuals who enjoy the madness that is novel writing, but this year there is a snag in the game - my MS is relapsing, which means it is rearing its ugly head. So, how do I plan to cross the finish line? With a cane in my hand and 50,000 words saved on a flash drive.
Having a disability, such as MS, should not stop you from achieving a goal; it just takes a little planning and forethought. This year, the plan includes:
1. Making sure that my desk and chair is arranged to have maximum comfort so hours behind the keyboard (still working on a good layout) are not quite so hard.
2. Get as much plotting done as possible. Trying to remember is hard at times (cognitive function), so if I have a direction to go, things should click into place or at least remind me where I got lost.
3. Notebooks for writing down ideas as they come as well as those ideas that I want to include in the novel. Again, cognitive function is slowly losing grip with reality (For those who know me - no jokes LOL - we know them all already [ha-ha]).
4. Comfortable pens. I know it sounds strange, but having a pen that is too thin or too thick, hurts while writing. I have different pens of varying thickness to coincide with my gripping capability.
5. My medication in the daily box. A pillbox that holds what I am to take is a constant reminder of my medication. In addition, I am making sure that there is enough headache medication to help battle my constant headaches. This holds true for general pain medication.
6. Comfy bed and “Writer” my teddy bear. The bed so I can rest and the teddy bear (who have been with me for several years) to listen to my writing woes.
Well, I think I am ready (even have the munchies and caffeine set up). The best advice from one crazy disabled NaNo writer to another is listen to your body seriously. Health is more important that 50,000 words. See you at the finish line - I will be the one with the bronze dragon head cane holding a first novel draft in my hand. Together we will celebrate with some sort of beverage - your choice.
Pharmaceutical companies go through extensive testing of a medication before the FDA will approve it and many of those tests involve human subjects - count me as one of them.
I dislike shots (I say “dislike” because hate is such a strong [yet accurate] word) and unfortunately, MS medication involves needles and you have a choice: (a) once a day; (b) three times a week; or (c) once a week (but this needle goes much deeper into your body - ouch). I was on option “b” until a month a month IV was introduced - that was two hours of my day (not to mention travel time). It should be noted that none of the current medications cured MS; they only delay its progression.
Now I have no health insurance, so I am not able to get my meds and if I do, they are in excess of $1,000+ for a one-month supply - not feasible. So what does a person do? Enter in the medical study or clinical trials.
I was accepted into a two-year double blind study (which means only the pharmaceutical company knows what I am getting) for an oral medication. There are good points and bad points to a study such as this.
The good: (a) free medication; (b) doctor appointments to make sure nothing is seriously wrong; and (c) no health insurance needed.
The bad: (a) the medication because one cannot be sure of what they are getting; (b) traveling to North County for a doctor’s appointment as they can take a large chunk out of the day and become extremely fatigue inducing; (c) not feeling as though anything is happening and only becoming aware of anything if it should be something major.
There are risks (as with all medication) and they are fully explained before you start as well as a ton of paperwork to fill out at almost every visit. Even some of the other location I go to (such as my MRI) email me a questionnaire after the visit.
The point to this rambling is that if you do not have health insurance, it might be a good option to look into a medical study to help you with some of your medical needs. You can google “medical studies” and find the one that fits you. They have studies for every major health issue.
The medication that I am taking, I have no idea if I have the real deal or not. However, I look at it this way - even if I do not have the real deal, at least I am helping those down the line.
Ah, summer – bbqs, sun and lemonade (or a cold beer) with friends and family. Sounds so Norman Rockwell – a picture perfect day with no worries. But, having MS can askew your view of things. The heat (from personal experience) can throw a large monkey wrench into things. You might thing that the wrench cannot be removed, but with a little planning, one can enjoy summer to a certain degree.
I could put in big bold letters – keep cool – but that is a natural given (not for just people with MS but for anyone). How does one keep cool? Fans and air conditioning while indoors. You can also make a cooling unit with only three things: 1) a fan; 2) 5lbs. of ice; and 3) a tub to hold the ice. To start up your system: a) make sure it will be in a location that will not be damaged by condensation and put your tub (you can place the tub on towels to help); b) place the fan behind the tub; c) open the ice bag and pour into tub; and d) turn on the fan to keep cool. The fan blows the cool air your way to help cool you down.
Even if you are out and about, you can still keep cool: 1) try to accomplish your errands in the early morning before the heat sets in or after sunset; 2) Drink cool water and keep hydrated; 3) Shade – find some. Even with a slight breeze it can help; and 4) purchase cooling packs. The Multiple Sclerosis Foundation (http://www.msfocus.org/) offers a chance one a year to get a free pack – either a) a vest with blue ice inserts or 2) hat, scarf and wrist bands. The hat and scarf are soaked in cool water until the water beads are swelled. As the moisture evaporates, it helps keep you cool. The wrist bands hold blue ice packs over your main vein on wrist – blood is cooled and sent back into your system.
I am sure there are other ways to cool down such as a cool bath or shower, even lounging in a pool (though you have to be careful of sunburn) can also help.
For me – I have three fans and an air conditioner at home and accomplish most, if not all, of my errands in cool morning hours before fatigue sets in (I can last for a maximum of two hours [and it is not just because of the heat, I had other problems with my MS]). If I am out, I find shade and hope for a breeze. I also have a cooling set (hat, scarf and wrist bands), but only use them on extremely hot/bad days. (Important note – do not freeze as they will get a slimy coat and no longer work as well, but keeping in the refrigerator is fine [makes is a lot colder]. If I get too bad, I will lay down in a dark room with fans and take a quick nap. (Naps are another topic completely)
No matter how you keep cool, a person who has MS can enjoy summer while waiting for cooler weather to come back.
When your laptop decides it is ready for retirement (read: die) when you are in the middle of a project or just surfing the internet – stress comes into play like a hard fast bodyguard trying to keep you out of an exclusive club, throwing the entire day out of whack. And if you have MS – it just makes your day a whole lot more “interesting” to say the least.
Stress actually acts to protect you (thus the bodyguard analogy) by releasing chemicals – a hormone called cortisol - into your body that helps make your reactions faster and your mind sharper, but for a person going through MS it also can make the symptoms more pronounced (sometimes referred to as an exacerbation). Stress can make anyone feel worse, be it an upset stomach to knots in the neck; however, if you have MS you also get to experience such things as the “MS Hug” (a girdling sensation around your torso) to speech and walking problems.
While there have been a lot of studies about the effects of stress and MS there is still no conclusive evidence that stress causes exacerbations, but try telling that to a person who is experiencing both at the same time – it is not a pretty day or picture.
So how can one avoid exacerbations that are caused by stress? Unfortunately there is no hard fast way or answer. We all live with stress in our daily lives, but at times something throws you a curve ball – like a dead laptop – and you get to experience the hormone rush. As things begin to calm down, the stress is released. When a person with MS has their stressed released, the fatigue that is prevalent throughout the course of MS can be more pronounced, but the other symptoms that had been exacerbated lessen becoming less troubling and/or less severe.
Relaxation has to be learned and practiced from modified yoga to simple meditation exercises – they all can help relieve stress and keep things on an even keel. As always, speak with your physician before starting any form of meditation or exercise.
So how did I relieve my stress from my dead laptop? I bought a new one and spent three hours getting everything back up to speed and then fell into a deep hard but restless sleep. Today, I feel better, but fatigue and the residue effects will linger for a few more days. One day at a time that is the only way to handle stress and MS.
Ah, the “joys” of Multiple Sclerosis (MS) – well, that’s an oxymoron – but hey you have to keep up a positive attitude no matter what, right? So, on the fun loving note, today I am going to be discussing some of the rarer symptoms that may occur during the progression of MS. It is widely understood that MS is different for each person – one can experience one thing (such as change of gait) while another person may not have that effect at all. At one point in time a person may run the gambit of all the symptoms (another blog for another time). So let’s get to some of the rarer symptoms:
Trigeminal neuraligia: Neuraligia means “nerve pains”. This symptom causes severe shock-like or burning pain in the face lasting up a few seconds up to a few minutes per episode and usually along the cheek or jaw line. Some feel a numbness or tingling before the episode. This is actually one of the more common or the rarer symptoms.
Gloss-pharyngeal neuralgia: These severe pains show up in the tongue, throat ears, and/or tonsils (if you still have them) as shocks or burning sensations. These can last up to a few moments for be as brief as a few seconds. These symptoms can be brought on (triggered) by chewing, laughing, swallowing, speaking or coughing.
L’hermitte’s sign: This symptom allows the person to suffer from sudden “electric” sensations that run down their spin and legs when the neck is flexed (bent forward, looking down). This pain confirms that there is demyelination in the neck area. I suffer from this and do have demyelination in my neck – I just call it my personal wake up call every time I look down. It is not that bad and you do get use to it.
Paroxysmal symptoms: These are sudden and momentary spasms of an arm or leg and often confused with seizures. Sometimes they are can also occur in the muscles used for speech or swallowing. They are a result of abnormal electrical discharges in the brain that have been damaged or scarred.
Pseudobular affect: commonly called an emotional incontinence and is characterized by uncontrolled laughing or crying that follows no emotion reasons or feelings. This is a result in damaged to the area of the brain that controls emotions. Further, it can cause a person suffering from this to become withdrawn or isolated because it can be embarrassing.
Pruritis: “itching” along the lines of “dysesthesias”. This form of itching is neurologically (nerve) based, it will not respond to normal topical ointments. It further can occur on any part of the body, but mostly on hands, arms, legs and feet.
If you begin to experience any of these, you should speak with your doctor as there may be options that can help you overcome these symptoms and continue on with more important things. Until next time, smile when you want to, cry when you need to and laugh whenever possible.
…Sounds like a good place to start. I was diagnosed with Multiple Sclerosis (MS) in 2004 [although I mistakenly wrote 2003 in previous articles – chalk up a mark for the disease/disability]. I continued to work but MS took its toll. All was not lost, because of the MS I was brought back to my one true passion – writing.
Yes, there is a reason behind this blog – I am in hopes that others who suffer with Multiple Sclerosis can find solace and maybe even learn something new or even learn to laugh despite all that they are going through or facing.
To help you on your way, I have included five links to the non-fiction articles I have already published:
I'm naught but a wanderer of this realm. My passion is discovery and my interests many. Not just your average wanderer, but one of history and time. My writings vary as I am truly interested in many things from the mundane to the outlandish.
The Dragon with MS does not receive compensation for the books, shows, products I may happen to endorse in my blog. I do not accept items for free to review and I do not review items/books/etc for pay on this blog.