Review: of #MedNexus heath search site

Today we are looking at MedNexus for patients. It is essentially the search engine for your health. The idea is to narrow your search right away. The problem with Google in this area is the you have to weed out all the cure sites, scam sites and sites with little to no informational value to find what you were actually looking for.

And knowledge is power for the patient. Often we are forced to be informed about our disease or condition. We need to know what sort of treatment options there are and what our doctors are recommending... if that is the way we want to go. We need to be aware of what is currently going on in research and medications. Often we end up knowing more than our doctors and this is inevitable. We have the disease... they have to know hundreds. So we know all the details, the research and the nuances of it all.

So this is geared to the patient to enable the patient to be able to find what they need faster.
What I like about this search site is that it is bringing you to reliable sources of information. It is so common people get misinformed by sites that just throw information out there without bothering to fact check or keep up to date with research. These sites though are journals are sites of authority. And this is vital. We want sites of authority so we can trust the information. Trust me when I am doing research for an article I find a lot of sites that are garbage. I wouldn't share them on my Page for sure. So much of that is floating around because they are just looking for traffic and use clickbait to get it.

There are search engines out there like this. Geared towards specific topics so you don't have to weed through all the crap. This one is useful to us: The patient.


MedNexus is easy to use and navigate. From my screen shot when you put in something like Fibromyalgia it comes up with some possible inquiries such as 'What is Fibromyalgia' . It sorts it into areas of research and then comes up with how many are in that category, for example is it a health, research or forum discussion. And I like that they did this because I for example am looking for studies in journals so that research section is very important to me but someone else might just want something more of a straight answer on a specific health topic. Results are sorted by Most Relevant and Most Recent. So you can sort through all the results and look through each of those returns. When you search, to the left left on this image, will come up with narrow down search features to narrow your topic. I like the general structure of it. The narrow down your search could have more options in it though.

The results you get as I said are quality answers and sites. That is obviously important and good to see. What I love to see is the research section. I have to dig research out of google when I am looking for something specific, this could be  a very useful tool.

I would have liked to see more results in the Health Topics. I found just what I was looking for in a research journal but the corresponding Health topics was way of topic and there were no others. I am not sure if they could add source to create more information, but I can tell by the searches I did I am not getting the depth I would need for the sort of research I tend to do. However, Some of the research I do comes up in the Research section which means it would be an easier way for me to search for studies on a specific topic.
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The company is still looking for feedback if you want to check it out and then answer their survey https://www.surveymonkey.com/r/2D5ZR58

The #work #limit



There is a fundamental contradiction when you are not working. This idea that you Can indeed work. You get this notion because you are not in fact working so you are managing the pain better and sleeping better. Things seem... better. Not awesome, but slightly better. Just enough that you yearn to be productive.

I have plenty to keep me occupied with my blog, my Facebook page, helping out with the Misfits page on migraines and my fiction writing. I am productive.

I even have gotten over this notion that my self-worth is tied to what I do. Sort of worked that out in my head. Especially since a lot of people in this area have been struggling to just work due to the decline in oil prices, and that is what the local economy is dependent on. So people are losing their jobs and taking anything as a substitute. A person said that jobs change, financial situations change, but you just get through it and when you are not doing well you make the best of it. I think then so many people are not glued to this notion that a job is their self-worth. And then my psychologist had said a great many people would desire to downgrade their work if they had the choice to. So I get it. I am more than my work.

The notion appears because I simply want to work. I want to daily activity. I want the routine, due to the fact without it my body has no comprehension of what a sleep cycle even Is. I want the interaction. I want the financial stability. I want the goals. The ambition. The Striving.

So I say to myself there is No reason why I cannot handle a desk job full time. I convince myself of this. I convinced myself of this when I returned to work full time when my insurance company cut me off last time. I knew it was a bad idea, but I was certain it would be better than the time before, and the time before, and the time before that. Because I Want it to be.

I desire something my body literally cannot supply. My mind says I must be able to do it. That it is conceivable.

And every single time my body states otherwise.

And even now when I have this overtly optimistic thoughts I am smacked down by a long pain streak that reminds me how horrific it is to work through that. How little sleep I get. How that makes the pain worse. How I get locked into a viscous cycle.

Then, once again, I understand I cannot work full time. It is not that I am a slow learner, although clearly history would suggest in this area I am, but that I am meeting a limit. I am meeting a limit and resisting the fact it exists. I desire and want for it not to but it does not in fact change the fact the limit is solid, a firm line, a solid freaking wall a smack into and not going anywhere any time soon. A limit that if I desire any wellbeing and quality of life I have to exist within and not exceed.

Too abled to be disabled?


This quote has stuck with me for some time because I am 'too abled to be disabled.'

All my life it has been. Hypermobility syndrome... exercise. FM, you can still be fine to work and for many years considered two young to even treat. Chronic migraines? You can't work full time, but surely you can still work. It was always about how to get me to work. How to get me back to work quickly. How to keep me working. And only recently at the pain clinic and acknowledgement that I simply cannot work full-time... took someone over a decade to realize this. After a decade of me struggling to push through the pain to work and failing too many times, enraging my employer, all the threats and ultimatums. Going on short term leaves, and my doctor asking when I was ready to come back... pushing and pushing. Going on a long term leave... insurance company pushing to get me back full time. And you realize, other than family and friends, no one in society accepts the limitations of chronic pain disability in youth and people in their working years.

People insist it isn't a challenge. That the pain isn't a limitation. Even as we are told to moderate our activities and limit what we do in a day. We are told this and then expected to do the exact opposite.

When you are too able to be disabled they will pressure you when you are on insurance for when you will return. When you comply with the things they ask they will say you are cured. They will say you are improved because they want you off the books. When you ask for accommodation from work they will think of you as a problem, as a complicated employee causing problems when they don't need to. I actually had it said to me accommodations were for people with 'physical' disabilities, like could not walk, not what I have which she said isn't really classified as a disability. What I want is job-sharing which is offered on the HR site but no one ever offers it. In fact everyone says no, you cannot do anything but work full-time in that position. Impossible to do otherwise. I know it is a lie. But clearly they think I am too able to be disabled. They must think I exaggerate this pain. That I love the guilt that comes with not working. That I love to feel unproductive and worthless.

Sick, but not sick enough. Invisible illnesses can be doubted. And sick but not sick enough means we have to fight stigma all the time around the fact our illnesses cannot be seen and Known.

Why are you fine one day and not another they ask? Well, you see I am in fact not fine one day. One day my symptoms and pain is manageable or functional and other days it is intolerable and nonfunctional. Pain varies. And sometimes just my tolerance varies. Days of 8s in a row will drain a person down.

What do we do when we are too able to be disabled? I believe I crossed the line into disabled but I firmly believe society sees me as too able to be disabled and that perception affects a great deal. Affects my work a great deal. How they will or will not accommodate me. Insurance companies insist you are fully functional and can work your job, despite the fact all evidence suggests you can't. You give that evidence to them and I think they just shred it or something.

They clearly want us to be Disabled disabled. They want to See it. They want a real reason to say this employee fits under that category and if we have to accommodate them then at least we know why we have to. Then they can pat themselves on the back for being all-inclusive. All the while those of us with disabilities they discount are having a hell of a time working in that enviroment with no flexibility at all for our chronic conditions.

I know full well there are good employers out there. I just never my fair share of bad ones. Sick of this pervasive view that I can't be disabled because it is not visible. Not something they can see. And anything else is insignificant.

There was a time I came to work, under threat of being demoted. So I had to come. No matter the pain and symptoms. Well it was vertigo and it was nasty. And it made me nauseated. I threw up in my garbage can four times because I could only make it till the customer left my office with no time to get to the bathroom. I had to go to the bathroom all day. You see it was not just a 9 migraine with horrific nausea and vertigo. It was also the diarrhea from the migraine. I had discovered I could not take pepto for it as that made it a crapping horrible pain instead. So a lot of running up and down the stairs. Going to the bathroom, throwing up, and back into my office to try desperately not to do so with my customer, a few times excusing myself for a second anyway. Anyway, I started to get ill. All that loss of water fast caused shaking and trembling and dizziness. To the point that I had trouble being upright. I could not drive home at lunch, because I could not drive. I had to curl up in a ball on the couch in the basement and rest. Near the end of lunch I went, all shaky as hell, to buy a Gatorade to get my electrolytes up. In other words I was at that danger zone in dehydration from getting sick, which I wouldn't be if I had been at home handling it and I have a few meds to help with that, and a drink to drink to resolve the issue if I get that sick. I mean customers were pointing it out. It was embarrassing. I had to say I had the flu. I ended up in the ER after work to recover from the vomiting and diarrhea. As a result of course the migraine persisted into the next day. I was so damn weak that didn't surprise me.

I wonder if someone had the stomach flu and was the violently ill... would they have been forced to work? Makes me wonder. The examples I could use, but that was a very unpleasant shift. And I think people will relate if they ever had severe food poisoning before. Anyone want to work like that?

But enough of the ranty rant for today!



#Migraine #supplement #offer from Nature's Nectar

 

 Today I found a Migraine Supplement deal after talking with the owner of Nature's Nectar!

 

 

  I know a company online with a migraine supplement they sell through Amazon that is willing to do a campaign with me. It is Nature's Nectar's Migraine Relief Supplement. He is willing to give it out for $1 dollar to try out the supplement yourself if you email him (support@naturesnectarlimited.com) for the special code. *

There are a few supplements that have been looked at and are recommended for migraines. Products that have them all in one just makes it that much more convenient for us, since they we don't have to go out buying a whole bunch of bottles. I have seen some that say oh we will 'cure' you and I have been asked to try those out and review them, but 'cure' grates on my nerves. Other companies are flaky, you wonder what they even have in there with the terms they use to describe their product. I want something straight forward that I know exactly what is in there. And does it have the potential to be helpful for me?

 This particular one has magnesium, B2, Feverfew and Butterbur in it. All of which are commonly used supplements and vitamins in migraine prevention and treatment. All of which I have used, but not all at once. 

So if you currently take these and want to try a combo here is your opportunity for a deal. Or if you would like to try a supplement for the first time this gives you a trial month to give it a go. It is a pretty good deal to give them a try. I was pleased I was able to promote the offer

  Here are the main components of the Nature's Nectar blend and I must admit it has exactly what you want in a migraine supplement. All the ones I have taken or do take are on this list.I in particular take B2 and magnesium regularly and consider them to be part of my consistent migraine treatment. I have FM as well, so magnesium is a pretty important one for me. I have tried Butterbur and Feverfew individually but not together and not combined into one package. Like I said, more convenient for sure. I have not been able to try a sample of this one though because I determined I was allergic to butterbur, which was unfortunate.  

*Disclosure* Always remember to tell your doctor of any supplements and Vitamins you are taking.  Remember that supplements also have side effects and to be understand there are risks involved with them. If you have questions you have ask your pharmacist as well.

Butterbur:  

Butterbur has some research behind it. The substances petasin and isopetasin are found in Butterbur. They reduce spasms and inflammation. This is thought to help prevent migraines and reduce frequency.

 Study

A study in 2004 discovered Butterbur worked better at relieving migraines than placebo treatment. These migraineurs said their migraine attack frequency was reduced by :
  • 48% with Butterbur 75 mg
  • 36% with Butterbur 50 mg
  • 26% with Placebo

Only Ever used Butterbur that is PA free. There is concerns related to the liver with Butterbur so talk to your doctor before taking it, especially if you have liver issues.

Feverfew: 

Feverfew has a substance called parthenolide, which helps relieve smooth muscle spasms. It also helps stop the brain’s blood vessels from contracting and prevents inflammation.


Magnesium:   

"Some research has shown low brain Magnesium levels during a migraine. Also, because Magnesium is needed for proper nerve function, it is thought that Magnesium deficiency and migraines may be related, making it an important vitamin for migraine aura and a natural remedy for migraines."Migraine.com

In a 1996 study of 81 migraineurs compared the  600 mg of Magnesium every day for 12 weeks with a placebo pill. Of those taking Magnesium, 18.6 percent had diarrhea and 4.7 percent complained of stomach irritation. Here are the results:
  • Reduction of migraine attacks from weeks nine to 12 : Magnesium 41.6% , Placebo 15.8%


Riboflavin

Often used in combination with other treatments. Or other B's. Riboflavin is necessary for growth and for the production of red blood cells. Riboflavin also helps with how our bodies gets energy from carbohydrates, fats, and proteins. Migraineurs may not have enough Vitamin B2. It is a potential often with other supplements.

  Source: Migraine.com Also lists side effects of these supplements.

*(offer limited to 200 people)


Best laid #plans...



A fiend calls you up to go to a concert, or to a dinner party or to go drinking? A family member invites you out of a family social gathering?

Do you go? Do you bail out on it because you fear you will be struck down with a migraine anyway? Do you hope you won't be and on the day of decide one way or the other whether you can go or not? Do I go out for drinks with fellow staff members after work? Do I do that 'volunteer' work at work for charity/festive events?

Should I? Shouldn't I? The question we face for any number of things every single day.


If we refuse: if we constantly refuse it is not good for us to be honest. It increases that sense of isolation. And socialization (Yes, even in introverts) helps with our moods. If we keep refusing, well, eventually people stop asking. And that is how you become a hermit like me. So for the friends you love you might want to find ways that work for you to hold onto them.

I will also feel guilty that I did, but not if it was a choice that I literally could not do. Guilt can be a factor if it was something important and I wanted to go, but could not. But there is no guilt if I say no to a heavy metal concert. I love heavy metal but I can no longer go to a concert like that. Not without a wicked migraine being triggered.

If we go: We may feel like crap when the day arrives and have to cancel. Or we may feel pretty bad, but tough through it for our friends, family and loved ones. We have to be prepared though. We have to bring an abortive and a rescue. And something for nausea. Sunglasses of course.

And what we choose to go to should be things that are not going to overly assault us with lights and sounds. I make choices based on how far do I have to travel, because it will not be fun getting home with a wicked migraine. What are the plans for? Because if it is something I can do; dinner, cards, game night, movie (sometimes) then I am more inclined to say yes.


Now there should be no guilt involved in this process. What it really is our own little cost vs benefit analysis. How much is this going to cost me in pain to what sort of benefit there is to be gained.

Concert:  

Cost: Loud, flashing lights, screaming crowds, smoke =High cost in pain.
Benefit: No benefit due to inability to focus on music. Music itself hurts. 

Playing cards: 

Cost: light in room, 4 people= minimal cost
Benefit: Having a good time with company, laughing, enjoyment, socializing with friends.


We have our limitations but we are aware of them. We should use that as a guideline to accepting plans, spontaneous plans or making plans. If we can't do A, we could do B. The idea is not to do anything at all, but to find things within your limitations to do with friends, family and loved ones or choose things within those limits you get invited to.

I was a real hermit and most of my friends had drifted off from the whole saying no to every invite, then there were none. So starting to socialize again is difficult and slow... for an introvert. I began with going out for coffee with my mother regularly. We then went to my spouses Christmas parties. There we mingled and met people. We had a few BBQs. Some of them we play cards with regularly. A dew helped us with our fence building and flooring. It took some time but we slowly collected a few friends again. And now we have to maintain them. Which means making plans I can agree to. Declining offers for things I know I cannot do.

When I realized we were hermits and that this then affected my spouse. I decided to just not say no to things. No matter how tired I was. As long as the pain was within its tolerable range I would say yes. This enabled us to explore options and meet people. Just sort of pushing myself a little to get the gain I was looking for.

Most often now when I make a plan I say 'I should'. I made it. I'm doing it. I prepare by making sure my pain levels are managed. My migraine is managed as well. And I bring things with me if they suddenly become unmanaged. And yes, sometimes it gets very bad and I have to leave early. But not all the time. And more than once it was a 9 pain day and I could not go out at all so I had to skip those ones. Pain does not stop me from going out, because the pain would be there anyway and as long as what I am doing is something just moderate, then I'll be fine to cope with it. The pain is always going to be there, it should not stop me from seeing friends. It does, of course, at the very high pain levels, but there is nothing I can do about that. As long as your friends and family grasp why that is, it is a non-issue.

Bad days happen and we cannot, absolutely, Cannot meet every plan we make to socialize with friends and family. We want to, but when the pain gets up into the 8 or 9 range we are useless to socialize with. I am dull as dirt. Barely there as a human being to be honest. And the migraine makes me dumb as a doornail. I don't laugh as much because I only half-ass even listen to what is going on around me. I am no ones idea of fun. Just sort of sit there wishing I was not in pain. So there will always be days pain flares and epic migraines will cause disruptions to plans. And we can't feel guilty about it. It is what it is.

We should remember that our social welling is also important just as our mental and emotional wellbeing. And having the enjoyment of friends and family does in fact help us cope. Gets us out of our head-space for a bit anyway.I personally only socialize once a month or so, but it is enough to feel less isolated. Once a month works for me because too often and that would mean too many cancellations. Once a month though? Most of time I can handle tolerating a few hours if I am prepared.

Recent Acupuncture study on FM


I have seen another acupuncture study that says it helps improve FM.

At 10 weeks, six months and 12 months after treatment, patients were asked about perceived levels of pain and depression and their physical and mental quality of life.
One year after treatment, acupuncture patients had an average 20 percent drop in their pain score, compared with a little more than 6 percent among those who had simulated therapy, the researchers found.
Scores on the Fibromyalgia Impact Questionnaire, which measures how the condition affects patients' lives, also differed between groups. Reductions were seen of 35 percent at 10 weeks, and just over 22 percent at one year, for those given real acupuncture, compared with 24.5 percent and 5 percent, respectively, for those given sham acupuncture, the researchers said.
In addition, pressure pain and the number of tender points also improved more in patients given real acupuncture after 10 weeks, as did measures of fatigue, anxiety and depression, Vas said.
However, although taking less pain medication, acupuncture patients were using higher levels of antidepressants after one year, which may have artificially boosted the positive results, he said.
The report was published online Feb. 15 in the journal Acupuncture in Medicine.
Dr. Allyson Shrikhande is a physiatrist -- a doctor who specializes in physical medicine and rehabilitation -- at Lenox Hill Hospital in New York City. She agreed that antidepressant use could have been a "significant contributing factor to their continued improvement."

So they admit here the use of antidepressants may account for the improvements and not the acupuncture. Medications make a difference in a study. Sort of have to take this one with a grain of salt as a result. That is one issue with this study. But I am not sure if acupuncture if confirmation bias or placebo effect because studies vary. Not a bad size study though. And a good time frame. In this study a good bit over placebo as well.

What I do know is that it causes no harm in trying. Like all alternative treatments, other than vitalins and supplements, there is no risk in trying these things. Unless you are afraid of needles. We have no idea if they do anything or not, but at least there are not a hundred side effects with it. If we get even a mild result it is something we can add to our regiment. We can even get a stress relief benefit. So nothing wrong with trying.  So there is that.

What I also know is insurance companies barely cover this sort of thing, if they even do. You at best get five treatments of anything on the plan I am on. So I used to pick and choose what to try that year. Massage? Chiropractor?  So out of pocket for the remainder. If you have out of pocket to spend on such things. I often do not. So there is also that.

I tried it back when I tried everything and I had a bad reaction. Which I doubt is common since you don't usually have a reaction. The acupuncture itself gave me vertigo. I have migraine associated vertigo. It trigger it. Severely. For about 20min after I could not drive or walk. For the rest of the night the bout was about moderate with spinning rotational vertigo and disequilibrium. It could have been a random bout so I went again. Same thing. It could mean that the acupuncture was in fact Doing something and my brain had a reaction to that, which means more than placebo is going on there. After all, I was there for a migraine treatment and I had a migraine response. Or it could simply be the slight tilt on the table threw my vertigo through a loop. Either way, had I wanted to pursue it my insurance would only have covered going a few times, so there was little point in the experiment anyway.

The attitude to make or break



Our relation to pain and how we think about the pain experience, adds its own flavor to that pain experience. "your attitude towards them that will make or break the rest of your days."

I have wonder about this because I suffer a lot. There have been times in my life where the pain was the same, but the suffering was lower. As in I was handling that pain better than I was later on, or at other times.... because the suffering became a problem. The depression also became a problem, which magnifies the suffering.

However I met this woman in my pain 101 class at the pain clinic who had CRPS which causes significant constant pain and she was coping exceptionally well. Well, we all had days where coping was difficult. The pain caused insomnia and such. But her attitude about her pain and her life was awesome. I remember thinking if she can do it, so can I. But I can't because my attitude about pain is all doom and gloom.

I have another example. Lately things have been an issue with my insurance company. It is making me stressed, depressed and in more pain as well as some serious nausea issues. But a problem comes up and my mind is all panic and worst case scenarios and over thinking. My spouse comes home and I tell him... he gives me a short, practical response with none of the woe is us that I have.

Do we see pain as inhibiting our life? Or as something that makes us live our lives Differently?
Do you think your pain took away what you could have been? Or do you look at all the things you are now in your live that are also meaningful in different ways. Do you think your pain takes away your future? Or do you have hope and possibilities in your future? Does pain stop you or just caution you?

Anyway, suffering is about the only thing I have control over. The pain clinic said there is only so much they can do for pain and the rest is teaching you to learn to live with it.

#Hypersensitivity to non-painful events and #Fibromaylgia


The problem with being sick is sick a problem


You`re sick.

But that is not the problem.

The problem is that you had the audacity to be Chronically Ill. And that simply is not socially acceptable.

People want to know when you will get 'better'.

They wonder why you 'don't look ill'

They want to know when you will be ready to work.

They want to know how it makes 'sense' you can do things one day, and not another.

They don't want to work with you. Certainly don't want to accommodate you. Being forced to leaves a bad taste in their mouths. Why should they have to conform when clearly you can't 'handle it'?

And why do you decline all those invitations? Or never get any plans done when you say?

Why don't you conform to what a sick person should. Do everything you can to get better and you will, don't you know that?


I wonder if they are uncomfortable because I represent weakness? Weakness they could have someday? Am I the frailty that looms ahead of them? Does it frighten them to see even the slightest sliver of the impact illness has on my life such as they imagine what it might do to their own? Or is it simply they believe it is my fault. My weakness that lead to my demise via illness. That they can save themselves the same fate. Is that why they believe all those little 'cures' will help us? Because they have to believe we are not doing enough to help ourselves and if they were ill they would do everything they could... and it would make a difference?

Oh society, how foolish you are.

This is an earned wisdom many of us achieve as we age. Some of us, sure, hit our goal young. But illness comes to us all.

It is unfortunate that all us chronically ill who are ill at unacceptable times. When we are young. When we are in our working years. Have to put up with the large extent of the stigma here. I suspect as I age, my ailments will not present such a problem for society. It will be acceptable. Finally. One thing to look forward to. The permission to have a chronic illness. As far as I know, no one is pushing a 90 year old to work or conform to healthy standards even though they are chronically ill.

What I like to stress about #ChronicIllness

IMPACT

For me that is what I most consider when I think about my invisible illnesses. For example I have asthma and hypothyroidism which are both invisible illnesses but for me they are very well managed. I discuss them for time to time and they do have some impact when you look at the whole health picture but overall I cope with them very well because they are managed. On the other hand, I have chronic pain conditions of fibromyalgia, chronic migraines and peripheral neuropathy and add those together and the impact on my life is significant.

Some of our invisible illnesses can have a significant impact on our lives. And, by the way, no rule that specifies we can just have one health condition. Rather think that is uncalled for though. One should be the rule and then you are good for life. Should be in the rule book.



The impact on our lives can be seen in all facets of our life. Our divorce rate is over 75% and we know the extra struggles and issues we have to overcome there.



We have a higher risk of depression and suicide.

Often you see stats on the cost to a country but the fact is there is a cost to Us. Education is affected as well as careers. Our income levels are affected as a result. I fought very hard to keep a career but in the end I have been on a long term leave for two years because I was not able to function working full time. We have a risk of becoming isolated. I call this the Hermit factor. It happened to me. It is a slow process that happens when we are in too much pain or too fatigued to go out, so we decline invitations, until slowly the invitations stop coming. Friends drift away and you do not have the energy to try and stop this from happening. Until you are a hermit.

Migraine Impact information
That is a lot of impact we have to deal with. We actually can deal with a lot of life stress caused by our invisible disability to be honest.
  • Work or not to work that is the question- Sometimes we need to reassess our work situation to see if it is working for us. It may not be. We may not be functioning very well and this may be causing a great deal of mental and emotional stress. If so we have to think about our options. Talking to our employer about accommodation, about flex-work, about less hours or about work from home options. If this is not available then going on leave might be the way to go. Although it might be worth your times to explore other job types that might work better for your health as some are a better fit. Or you might look at downsizing to part time and going that way. Again sometimes it is good to look to see how you might be able to reduce the pain and suffering caused by the full time work.
 
  • The Hermit factor- Like I mentioned this occurs with us not even noticing it right away. We are fighting our health, trying to get things done and just getting through the day. So we might miss this social life of our slipping away. However, getting out of the house and socializing actually is good for us mentally and emotionally. It is a good idea to start slowly picking up a social life. Which, I know, is difficult when there is nothing to start with. It had been recommended to be when I started to go for short walks, to get me outside. To invite people, even family, for coffee at the house or a coffee shop, so that it was a comfortable short duration. From there I updated to a game night where we play cards with co-workers of my spouse. But start slow and by inches enter society on your terms and in your way. Some people like to join like art therapy classes or other classes like pottery to get them out and commingle with people, does count as socialization.
 
  • Relationships- Of all sorts can be a topic its own I have already written about. Suffice to say issues come up with chronic pain relationships that do not come up in others. We have to understand what caretakers feel and go through. We have to understand what friends must be feeling. We must understand how some family members just do not know what to say. They key is always communication but differently for each group. The problem is that without it resentments can manifest and bitterness can develop. But we can foster good understanding by explaining how we are grateful to our loved ones for what they do for us, for being there for us when they need us, for being an ear to talk to, for being understanding. We can also explain our limits and suggest compromises. No, I cannot go to that large gathering on Saturday because I will not be able to handle it but I can meet you for coffee on Sunday to chat.
So those of us with chronic invisible disabilities have to deal with a lot of Impact on our lives. We have to cope with that as well as our illness and try to manage that. When it is difficult that stress can make it harder to cope with our illness.

Embrace the turtle.


It seems difficult for me this concept of 'having a life' and having chronic pain. I can comprehend we have to make compromises and may not be able to have the career we wanted. A decision that is complicated, comes at a cost but can be beneficial to our health when we were exceeding our limits.

I mean it is difficult to be not a hermit. To have the desire or energy to do anything at all. The motivation to even want to do anything at all. The pain itself, well, here is how it goes...

I want to paint the walls in the bathroom.
It needs to be done.
I want it to look better
I am very aware it will be painful while I am doing it.
It will trigger a migraine while doing it.
I am extremely aware the heightened pain will last for days afterwards.
So when can I do this so that I can suffer the consequences with no interference?
Then I do it.
And I suffer the consequences of it.

But here is the thing. Sometimes I weigh those scales of want vs consequences and I just don't want to pay for that extra pain. So how is a person to have this 'life' with chronic pain when we always have to pay for it? And be willing to pay for it? Sometimes when I look at that scale I only do the things that are need and consequences, instead of want vs consequences. And this leads to a lot of isolation because it becomes only what needs to be done, such as work gets any attention.

So psychologists push you in this area. For a reason. Socialization is good for the mood. Activities and hobbies... good for the mood. They say, you will always have pain. Therefore choose to do those things that bring balance to your life Anyway.

But it always hurts a boat-load more. What about That little fact of life?

Do those things... socialize, activities, hobbies... whatnot but only within your limitations. Moderate all things in your life. Never exceed your limits and get into the boom and bust of pain. Where you do too much and have a flare of pain lasting for days, and fatigue, and then do it again when you feel able. Instead always avoid that with moderation.

When we say we exist instead of live. We are exceeding our limits. Hard.
The lifestyle we aim for is one of moderation in all things.

What it seems like to me is that we are aiming to be more mellow than the rest of this fast paced society. We have to take our time getting things done, and that is all fine. We take the time to read and meditate because we know our hobbies and mental health are just as important as our physical. We don't work hard and play hard. We play gently.

We are not the rabbit people. We are the turtle. Slow and easy is our lifestyle. Embrace the turtle. (Now my title makes sense, eh?) Or embrace the tortoise if you prefer.



Thoughts on Journals.



We didn't ask to live in the land of pain. That is what we got. These thoughts are the thoughts of my pain. Pain gives me some seriously negative thoughts. I think about the fact I am in a lot of pain today. For the most part, very low functioning as well.

We really do have to confront this overloading negativity because it has an in. It has the pain to console its thoughts out.

We have to be the ones fighting for the other side. But we need to work through it. Get the bad thoughts out. Get some good things in there. And I find working through this is a lot easier on paper.

To be honest this negative and trying to get my brain around thinking that way is done on paper every night. I find journalling to be really beneficial in getting things out, but also for noting the positive things in your day... despite the pain, you can usually find something decent to say about a day. But it can, on other days, be damned hard. Which is what makes it an important undertaking.

What I do at the end of the day in a journal is:


  1. I look for 3 things I ma grateful/thankful for. Grateful we had a showing on our house (we are trying to sell). Thankful I managed to shave two massive knots out of my eldest cat (Looks scraggly, but he feels better). Thankful my spouse bought me a Booster Juice after all our running around early in the day. 
  2. Then list 1 think you have accomplished that day. Just one simple thing you have done that you wanted to get done. Helped shave Frank to get rid of his bad knots.
  3. List 1 goal for the next day. Laundry
  4. pain levels: so for me migraine: 8 FM: 7
  5. Three main symptoms aware of: nausea, dizziness on standing, earache. 


Then since it is a journal you can write a blurb about anything you are thinking about, is bothering you or you want to remember. You can add any sort of daily topics you want for yours, these are just my general ones. The first two are to help us focus on the positive aspects of our day and studies have shown it helps with mood. When I am exercising I also keep track of my minutes and days.

Personally I think writing down negative thoughts gives them less power. And writing down the good things about my day and one thing I accomplish, makes me feel better about that day. Generally I see nothing positive in a day wasted from pain, so I have to work at it a bit to find anything I am grateful for. But there often little things.


Yes I have #pain. No, I don't always mind when people don't 'get it'



What I was saying in the beginning of this image was that there are just going to be people who just don't get your illness. And that is fine. It doesn't in any way invalidate your illness. We do not need to prove it to them. We have that illness. We don't need to definitively prove it to any naysayers like it is on Us to show the evidence we are in fact sick.

AND... that is where the second part comes in. Because who needs those people in our lives anyway? Dealing with all that argumentation and doubt? None of this changes the fact you have an illness, but might change the amount of time you spend with that person. But, whatevs, you never liked that douche nozzle anyway.




We really don't have to get drawn into these arguments. Someone does not believe you are as ill as you say, as chronic as you say, or have the right diagnosis.... that is on them and whatever reason they have for doubting medical professionals. It is not on you, to have to validate its existence to them. So random person A doesn't get it? Random person A can walk in and out of your life just never knowing the answer.

Frankly you could say this for every one in your life that doubts your pain. I have it. I don't need to validate its existence to you, just because you cannot see it, feel it, understand it yourself therefore doubt it. It is enough I know it and will treat and manage it.

We really do want loved ones to know and understand our chronic illness though. The more understanding they have of how our illnesses work the better caretakers they are when we need them. The better assistance they are when we need them. If a spouse does not get it, you want to try an educate them. If they refuse to read up on it, listen to you or your doctor... then that can lead to serious relationship hardship and coping.

Lack of #Motivation issues




You see with chronic illness we have a life of inches, I think. A slower paced life. It takes a lot more effort to achieve any goal. It takes more energy to achieve any goal. So we should be proud of our inches. Here is the thing though. We want to live this life of moderation. We want to do things to help our health. Have a social life. Yet with chronic pain and illness comes this decrease in motivation. Part of that is pure pain. High pain motivated someone to not move much during it.



Lately I have been having troubles with motivation. Which is something that can be a common issue for the chronically ill. We all have obligations in this life. We all have particular health goals we want to achieve as well. But some of us have pain. Some of deal with fatigue. Sometimes it is more one that the other and sometimes it is both. Not to mention other symptoms, but pain and fatigue compromise our motivation to accomplish tasks. Both sap our energy and give us only a finite amount of energy to play with.

In fact according to a previous study I have already written about "So that sensation that you have no motivation to get through the day, to attain the goals you need to or even attain the goals that are seriously meaningful to you could have little to do with the pain aspect of the chronic pain... but is part of the persistence of the chronic pain itself. We no longer have the sense of their being a reward for our behavior. We no longer have a sense of pleasure from our accomplishments. It has been dulled." (Motivation? What motivation.

So there is study. Either way we have these motivational issues.

It seems to take immense motivation to achieve Any goal, let alone consistently maintain an activity we choose. Day in and day out.
I know there are factors we can do to improve the situation. Get some good sleep. (I vehemently wish this to be possible)  Exercise, since that helps with fatigue, both mentally and physically. I have been told this over and over but I have actually not yet experienced this elusive effect. I have experienced some metal clarity from some mild exercise, but as soon as I got to moderate exercise that disappears and physical fatigue, well, that remains the same.
The fact remains we can struggle with maintaining routines and this is fine. It is all right to have days when it is not possible to achieve our goals. We should never feel guilty for this fact. We just have to continue on the next day. That is exactly how I see exercise. I cannot maintain a routine. It is impossible, but I do get in the weekly requirement. Simply by doing it on the days that I can. There are days when I can only do a little. Days when I can do more. And days when I cannot do anything at all.
Another thing we should always remember is we will not improve at anything by leaps and bounds. Rather we must take our time to establish new routines. If we want to make any change at all to our lifestyle for any reason we should adjust it carefully, slowly and understand it takes about three months for any change to become habit. I like the rule of 1% for the chronically ill. Never go I need to improve 100% at anything. No, rather say, I need to improve 1%. I need to choose one thing and adjust it slowly. In this we can achieve our goals without hitting too much pain, too much fatigue and inevitable failure. I am going to use exercise as an example again because it is an easy one. When I began exercising using aerobic exercise I first established my limit. That fatigue and pain barrier. Not too far, but just hitting it. And that was ten minutes. From there it was just a matter of my little bit of improvement a week. So from ten minutes to eleven minutes. Slowly by inches working my way up. I had no set goal. The goal was improving on the previous time. If one day I was back down to ten, so be it. The next day was a new day. We can do 1% improvements on any sort of goal we want to choose for our health or well-being.
 
It is also important that we do not choose several goals at one time. It can be very difficult to achieve just One thing more onto the rest of what we have to deal with. Lets be honest about that. So do that One thing. When you have consistently achieved that goal then you can consider adding to it. Too many things and we will get frustrated, flustered and eventually just want to give up on all this changes. Studies have shown humans are not designed to be multi-taskers. And I think those of us with chronic illness should think of this more. We have focus issues to consider and fatigue concerns. Focus one thing at a time. Take on less not more.
Now that is for goals. But I have issues with motivation to get up on time. To do anything at all. So on bad days I have a rule with myself. I achieve one productive piece of housework. I write one piece of work on the computer or pages of work. And I cook supper. As long as I do those three things a day I consider it a success.
Keeping up motivation for all the other things I need to do? I write lists. So I don’t forget them to be honest. Then I knock off one thing at a time and feel like I am getting somewhere every time I do, even know the darn thing keeps growing on me.
Still there are days when the pain and fatigue win. And there will be days like that. We have to accept that and not feel guilty about it. We need our rest when we are like that.

Still other days where the depression wins, because there is no motivation on these days.





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