Sunday, April 26, 2015

Make it a great day #HAWMC

Life is full of ups and downs. Sometimes, the type of day we have is out of our control, but other times, we can influence how our day is going. Come up with 5 tips for changing your frame of mind when you’re having a bad day!

There are times when we have some control on how we react to pain. We can react in a way that re-frames out pain in that moment, such that it is not a negative experience at the time. We can in effect take what could be a bad day and make it into a good day. Not always easy to do, but it can happen.

In a work situation to help me with pain and stress I do this:

  • I do not multitask. It has been show to be detrimental in all people, but with chronic pain when half the brain is thinking about pain, it is even more so. Your concentration is impaired. So I do not do it. One task at a time.
  • I eat little snacks through the day to keep my blood sugar up and it helps with brain fog.
  • I do a walk about the office every twenty minutes to reduce levels of pain from sitting too long
  • I utilize a reference book I have made, so if I forgot something I can refer to it without being stressed out about it and trying to remember. (Although since I started back I have not had that, I have to go get it from the other branch... because I Need it).
  • I use note taking. Reminders on my phone. In the system at work. It is less stressful to me to have ways to remember tasks I have going on. At work I use a tasks work sheet for tasks I have pending. 

The fact of the matter is for better stability, bad pain day or good, it is better to stick to routines. With brain fog, concentration issues and pain routines can reduce a lot of stress on us. Focus on one thing at a time. Finish it move onto the next. Take reminder notes to yourself. Have a calender app you can plot things into. Keeping organized as you can really does benefit us. It takes a lot of the stress away on a bad day when things are already that much harder to accomplish. 

Saturday, April 25, 2015

Word Cloud #HAWMC

Use Wordle to make a cloud full of words that come to mind when yo u think of your blog, health, condition, interests or community. Pro Tip: Use a thesaurus to make the branches of your “tree” extend further.

I didn't use wordle as it seemed to disagree with my computer. So I used Tagxedo which I have used before.

 This one is made from words from my blog

And this one was words that I chose.

Friday, April 24, 2015

Fitness Friday #HAWMC

Tell us about your how you maintain a healthy lifestyle. What is your favorite type of exercise? How do you manage fitness with a chronic illness? 

This is a hard one. When I was not working I was exercising 20 minutes about four times a week on the stationary bike. The pain clinic had wanted me to do aerobic exercise so that is the method I chose. Prior to that I had been walking and doing yoga.

Working through has sort of cut into my energy and already I have been exercising less. I find it difficult to combat the fatigue inherent with working fulltime. I do mediate to relieve the stresses of working. But having the energy after work to do Anything has been difficult. So I have been trying to exercise on my days off.

And it is important to me to exercise because it is part of the routine set up by the pain clinic to help me with the chronic migraines, which have been very difficult to treat. So primarily it is medication, meditation and exercise. To cut one of those out and I could have adverse affects. Something I do Not want to see while working.

It is in fact a very difficult balance to maintain. All the things we do for our health... and working. When I am not working I will do anything for my health, within my very limited financial means. They ask it of me, I will do it. I want improvement. However, you show any slight, every so minor, not even statistically significant improvement and you are Cured and off to work you go. And then somehow you have to manage to do all those things that may have caused that very slight improvement without having work itself causing a massive decline. Complicated? Very. Something in the past I have never managed to succeed at. But then I never managed any significant improvement either. Not that I had any improvement this time, but I will say the meditation does help a little so that is something. Will it help enough? Hard to say.

So finding that extra oomph for exercise is difficult. I had a difficult time with it not working. I had to work my way up to 20 minutes. Slowly and consistently over time. And I was supposed to keep on with that progress. And also keep up with my physio regiment.

I'd like to say I will succeed in establishing that balance as I know it is important but adapting to work has been difficult and hard on the body. That being said if I cannot I may go back to what I had been doing; walking in the evening and on alternate days doing some yoga. Less strain on the body and more relaxing to be honest. I feel that exercise is important for managing pain, but I am not set in stone on aerobic exercise like the pain clinic is. Especially since I read the study they are getting it from and quite frankly I was less than impressed. I understand their reasoning, just that I also see the value in any exercise, period.

Thursday, April 23, 2015

Painsomnia #HAWMC

Health Activist Choice Write about whatever you like! Got a great story, opinion, or tip to share? Tell us here. 

 I will use this topic to discuss painsomnia. When you have chronic pain it can quite easily lead to insomnia due to pain, worse when you already had insomnia to deal with to begin with. I have always had insomnia, since I was quite young. I had pain from hypermobility when I was a kid and developing insomnia from that is apparently quite common. Fibromyalgia just made it worse. When the chronic migraines developed well Then I had a Problem because lack of sleep is a migraine trigger, then an acute migraine at night made it even more difficult to sleep, leading to very little sleep, leading to a migraine the next morning... and that is the cycle I got stuck into.

So what do we do about painsomnia? here are some of the things that I do.

  • It is recommended to avoid electronics like the computer and cellphones before bed due to the blue light interfering with sleep. I like going on the computer before sleep as it is quiet and I can use it as my down time. The solution is putting a program called F.lux on your computer so that it changes your screen when it starts getting dark to a rose tint so we do not have the blue light issue.
  • I do mindful meditation right before bed, in bed in fact, to get me ready to sleep. I am all hyped up before sleep. My heart rate is rapid. My mind is wired. As a night person this is full alertness going on. I need to tame it down a bit. So I do some mindful mediation in bed for about 15 minutes and this puts me in a state that is prepared for sleep.
  • I take a sleeping pill. I have been on a sleeping pill called zopiclone (similar to lunesta) for a few years now. I was put on it because I was sleep deprived and getting numerous morning migraines as a result. In order to get some sleep at least I was put on this, and it does get me some. It is something to ask your doctor about if it is right for you and your health conditions.
  • Melatonin- I have been taking 3mg of melatonin at night in addition to the sleeping pill. I tried 5 mg and 10mg and they didn't work. I read a study that found that 3 mgs can work better on people where the 5 and 10mg did not work. And the 3mgs seems to work for me. Helps make me drowsy with the sleeping pill and I am able to fall asleep faster than normal (normal with a sleeping pill is an hour or so, without is two to three hours).
  • If I cannot sleep at all and I am tossing and turning and getting frustrated. I get up go for a bit of a walkabout, go to the bathroom, maybe read for a short bit and then go back to bed. Sometimes this relaxes you and you go back and find just a good position and are comfortable. It is a good trick and works for me.
  • I have tried the theory of only going to be when tired... does not work for me. I have insomnia for one and that would mean going to bed too late to get up on time. Secondly does nothing about the pain inhibiting my sleep.
  • I also drink a nice herbal tea before bed. A sleep time blend or a headache blend. Both are very relaxing and I doubt they do much but they have no caffeine and can't hurt.
So here is to a good, quality nights sleep!

Wednesday, April 22, 2015

Hobbies #HAWMC

Running and 3PM dance parties are some of our favorite hobbies at WEGO Health. Tell us, what are YOUR hobbies? Love to crochet? Can’t stop collecting rocks? Take photographs of everything? Share your favorite past times. 

I think hobbies are a pretty fundamental coping strategy to be honest. We all need our pain distractions and things we can get really into. Things that are just for us, not necessary things we Must do, but things we enjoy to do.

For me, I'm all about introvert hobbies.

I have been an avid reader since I was a wee kid. I love fantasy fiction novels. I consume books. And hoard them as well. Although the Kindle has helped with my hoarding tendencies slightly.

I also love writing. I write fantasy fiction novels and self-publish them. I am working on the third in a series right now. Nothing better than reading fantasy than writing it. Getting absorbed into a world of your own creation. I write non-fiction as well and those tend to be health related articles. However, fiction is a true pleasure of mine.

This is my writing blog: The Hermit Also feel free to check out the novels I currently have posted on Amazon. This is the first in the series; an urban fantasy fiction novel White Witch Where Art Thou? If you do pick up a copy feel free to review me on Amazon, as it is hard to get readers to review and I could use some reviews since I dropped my pen name.

I also love blogging. I have developed this blog for many years. Cultivated it. Grown it. And I think it is getting better every day. It is something I am passionate about for sure. Partly for raising awareness and partly because I enjoy the act itself. I would not consistently be doing it if I did not enjoy it.

Finally, part of my raising awareness is running my Facebook Page Making Invisible Disabilities Visible and also helping admin Migraineur Misfits Page. Part of that is finding research to post on them. But I also create images, memes and posters... and this I think is a creative outlet for me. It has become an interesting hobby for me. I could just share images from other sites, but I take pleasure in creating my own. I also from time to time write poetry and put that to images to post to either of these pages.

You might notice none of these hobbies require me leaving the house. As I said, all my hobbies are introverted ones. I make a fine hermit really.

Monday, April 20, 2015

Travel Time #HAWMC

If you could travel anywhere in the world, where would you go and why? Maybe you’ve already traveled to an exciting place and want to go back. We know travelling with a chronic illness can be challenging, so any tips for others that you can share would be great! 

 I have always enjoyed travelling to Scotland. I have family there. I love the history. I love the nice, cloudy, rainy weather... sun and migraines just do not get on so well for me. I have been there twice in my life and would love to go back. I have also taken a short trip to Ireland and would also love to go back there. In my books you can't do better than lush scenery and ancient castles. Just my thing.

When it comes to trips it is very important to remember these are to be enjoyed. This is a time to de-stress, relax and enjoy yourself. And that means trying to reduce all the stresses that come with travel.

  • Medication: travel with all the medication you will need, then some, and all the OTC medication you May need because your body is more stressed than usual.
  • For migraines: Always travel with hats and sunglasses. A major Must.
  • Stay hydrated at all times.
  • Take plenty of breaks. And pace yourself.
  • Never feel like you need to rush. This is a vacation not an expedition into the great unknown. I tend to want to take my vacations at a mellow pace. One to two events per day, with extended breaks in-between. And I take my time doing things. I do not fear taking breaks.
  • For me in particular I cannot just go out into the boonies and camp. I need amenities near by due to my rather delicate digestive system. Camping I have also found to be too painful even with air mattress and foam overlays. So instead, because I do enjoy nature a great deal, we choose to go into the mountains and rent a little cabin for a few days. You have to choose to adapt your vacation to your illness and needs. I enjoyed that mountain trip immensely even though I was sore from walking a bit too much and had to take breaks due to migraines. Camping though, I do not enjoy so much. It is too much of a strain on my body and I cannot relax at all or enjoy myself.
  • I tend not to fly but when I must I give myself recovery time, because I Will get a migraine and I Will get vertigo from the flight. So need some immediate down time.\
  • I prefer road trips but even with them I do not do drive through the night type trips. I take my time. Spend the night at motels. Give myself the time to get where I am going and make the journey part of the trip, because rushing is painful. Sitting down too long without stopping for walking breaks is very painful for me. So the journey itself must be paced.
  • Above all enjoy yourself.

Sunday, April 19, 2015

#Stress awareness month #shakeitoff #HAWMC

What’s the best way you deal with stress? How do you like to let loose to escape common stressors? Share with us your favorite ways to shake off the stress. 

 I think stress sticks to people with chronic illness like static and it is in our best interests to do all we can to shake it off. A difficult thing to do at the best of times I think, since chronic illness itself and chronic pain itself Causes stress to our bodies.

Get in the groove: Every night before bed I put on some tunes. Music can really boost the mood and I think in itself be a way to cope with stress. Shake it off a bit.

Zen out: Likely the most productive tool I have right now to combat stress is doing meditation when I can, every day, sometimes twice a day. It helps combat the pain and relaxes me. Helps me cope to be honest.

Nap it off: Generally if you have insomnia you should not nap and if you do it should be before noon and short in duration. However, I feel that there are exceptions to this rule and the exception to this rule is when I feel mentally and physically run down. I am in pain, there is no way to treat the pain. I am tired and fatigued. A nap sometimes is something that is beneficial when my body is feeling exceptionally stressed. I do not do it often because I do not want to overly affect my crappy sleep cycle, but when I do I fell better for it.

Take a soak: I am more of a shower person because hot baths make me dizzy and tired. Just have wonky low blood pressure. But there are times when i am sore and stressed that I want to have a good soak in an Epsom salt bath for a bit. I find it very relaxing.

Distract the brain: I likely utilize this more than anything because stress for me often comes with overthinking about things I can do Nothing about. Therefore it benefits me to do an activity that takes some brain power away from that over thinking. Like maybe just reading a good book. Or writing. Anything that actively distracts the brain.

#Survival #mode and my little rant

I have been in survival mode before. For years in fact. I am not at this moment, thankfully, but this poster struck me.

When you are in survival mode it is very much a life by inches. You are living moment to moment just trying to get through the pain. Time ceases to flow in a proper manner and it is hard to remember events clearly as it all gets tangled up in the pain. You do things all the while thinking 'Just have to do this, and this, so I can get home and suffer in peace. Just in peace.' It has a quiet desperation to it. A silent scream.

It is not meant to be how you live. No one can survive like that. Or want to. And I should put that distinction in there... you don't want to survive like that and really are just making up excuses to live at all day to day, or reasons not to.

At this point it should be of utmost importance for medical professions to really, Really put some significant effort into improving your quality of life. They ought to know that pain itself is a suicide risk after all. Yet, time and time again, I have had and others I know... 'Sorry, nothing more I can do for you.' Or they ran out of ideas. Or they don't know what to do. Or maybe they will send you to a specialist that will take a year to see and He will not have any idea what to do. No one has a clue so no one does anything and you just have to grin and bear it. Just push through the pain. Until you can't. I remember one time when I was immersed in this survival mode a neuro I had seen for a few years told me he ran out of ideas and there was nothing more he could do for me. I cried when I left his office. Just felt consumed by a sense of hopelessness. And we need hope. Even a sliver to get us by. We need something to aim for. Sometimes all that Got me through was knowing I had a neuro appointment coming up, even if it was a year away... thought if I could just get to that he would do Something.

It sort of ticks me off when I think of how many years I lost to that level of pain. And at any moment could again, but lets hope not. Think of all the things you simply are not capable fighting high levels of pain every day. The level of fatigue that comes with that. You just become incapable of socializing of pretty much anything beyond the essential and necessary. Mind you, I wasn't doing so good with the essential and necessary either. That is because the whole 'push through the pain' only actually works for short durations, or durations with a pain break and not for long extended periods of time. It takes too much of a toll.

It should not be acceptable. I think about this opiate pain crisis and what I think about is all the pain patients that will be denied treatment because their doctors are now afraid to prescribe medications. People seem to forget that pain needs to be treated. Treatment is complex and more than just medication, yes, but it is also medication. To allow people to just suffer and fall into this survival mode is horrific. It is saying that as a society we find it acceptable for people to suffer. For pain patients to kill themselves because they were in too much pain for too long with no hope of treatment.

Maybe survival mode should be instead that point where you get aggressive treatment from medical professionals. Multidisciplinary treatment that covers all aspects of chronic pain treatment. That helps people survive. Helps to save lives. That would require, of course, more doctors being educated about pain. More pain clinics. More pain clinics with well planned Multidisciplinary treatment programs for pain patients. Specialists at those pain clinics who understand the role of medication and do not have a fear of pain killers.