Friday, February 5, 2016

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.

Wednesday, February 3, 2016

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.

Monday, January 25, 2016

#Fibromyalgia and #Relationships

Often studies look at the impact of how fibromyalgia and chronic pain impacts the workplace and the individual but there has been very little to look at how it can affect relationships with our significant others, family and friends. We know the burden of illness on the individual is high in regards to fibromyalgia and we know it can adversely affect a person’s career and it is obvious the stress, isolation and guilt of these factors alone will carry forth into other aspects of the person’s life.

Recent impact study on fibromyalgia
A recent 40 question multiple choice survey was posted online for a two month time period through various fibromyalgia and migraine forum websites. The objective was to poll a large sample of adults with FM about the impact on their significant other, friends and children. Questions included were regarding their symptoms, their demographics, any comorbid mood conditions, the relationship impact (with Relationship Assessment Scale) There were 6126 respondents to the survey who had been diagnosed with fibromyalgia.

“Using updated diagnostic criteria from the American College of Rheumatology, 91% satisfied the criteria for fibromyalgia (Fibromyalgia Severity score ?13 and pain ?3 months).
Half of participants endorsed that fibromyalgia had mildly to moderately damaged relationship(s) with their spouse(s)/partner(s) or contributed to a break-up with a spouse or partner.

Half of participants scored as not being satisfied with their current spouse/partner relationship, with satisfaction negatively affected by the presence of mood disturbance symptoms and higher fibromyalgia severity.

Relationships with children and close friends were also negatively impacted for a substantial minority of participants.” Musculoskeletal Care, November 21, 2012

To someone with fibromyalgia or to family members this seems like an obvious study, but sometimes the obvious needs to be pointed out before anyone looks into it. People do studies on the workplace because that affects the financial bottom line, insurance companies, the economy and important factors like that which govern statistics that make the world go round. Whether or not a marriage, a friendship or a family member is affected or a relationship harmed by this syndrome does not rank up their in importance even though it has a significant affect on the individual and the family unit. Obviously this is not necessarily the case; we are just talking about a large, rather consistent stressor. One that is difficult on the individual. One that is difficult on a significant other. Together that can cause a conflict or at the very least a lack of acknowledgement of both sides of how difficult it is on both parties. Chronic illnesses are not isolated events which affect individual bodies; they are illnesses that affect individuals and relationships of all kinds. People can sometimes understand and give a great amount of assistance and sympathy for a disease that is curable and short in duration but struggle with one that has no end date, where they no longer know how to respond, how to help the person they have a relationship with or what to do say about it. It creates a tension and the person who suffers from the illness may believe the family member, friend, loved one does not care, does not understand or is indifferent to their suffering. Unfortunately sometimes there is no way to breach this gap. However, it is always worth the effort to open communication. To try and inform people about the nature of your disability so they can understand it better because while you have become more informed as you have gone along, they may not understand it at all. While you have learned to cope in various ways, they may not understand your process, your limitations or restrictions and until they do they cannot help engage you within those boundaries. You have to understand while you are affected by your illness, they are affected as well and therefore your relationship to them likewise is affected and must be adapted in some way. Not all friendships will endure. Not every family member will understand. Not every relationship will cope. However, the ones that do are the ones worth the effort because positive, healthy relationships are our support network that are necessary in ways we do not always even acknowledge but certainly when surrounded by negative, critical people we feel the difference. We should therefore try to nourish the good relationships and encourage new ones that are positive.

Things to thing about:
a) See no evil: Sometimes family members or friends will simply pretend there is nothing wrong with you as if by the simple denial it will go away or become less of a problem. They feel helpless to actually do anything about it so they simply believe if they ignore it; it will make it easier for you to ignore it. Yet this apparent disinterest seems like lack of caring and can really make a person feel stressed out like the entire burden is one the to pretend they are ‘all good all the time’. As someone with chronic pain it is important to understand your family does not want to see you in pain and it is frustrating for them to see it and be unable to help. People have different ways of coping with that. Open communication is always quite important.

b) Acknowledgement: In a relationship sometimes we might feel that our partner does not comprehend how difficult it is for us to function and to complete daily activities. Yet we feel guilty if we do not do our share or some part of the routine tasks of the household. When we do them and our partner does not acknowledge the toll it takes on us this can develop into a feeling of isolation and resentment. Likewise our spouse may take on more of the household duties to compensate and feel that we do not acknowledge the extra effort they are putting in. This effort they are willing to put in but takes more energy and time on their part as well. If they bring it up it can make us feel guilty and immediately make us defensive because of that guilt. The need for communication is vital between partners so that resentment does not build up and an argument over these situations does not develop. It is important when communicating with your partner to not be defensive and understand your partner is not blaming you for being ill. They have valid frustrations and feelings and it is important to acknowledge their struggles with them and their extra efforts. Be open to suggestions on ways to accommodate chores and housework in ways that work for you.

c) Hermit: Friendships can be difficult to maintain over a long illness. Friendships are a two way street and when a friend feels they are always the one making plans that you have to postpone or cancel, or you never seem up to socializing or have as much energy to go do the things you once did with them they may feel they are giving all the energy into the friendship. They may feel you no longer have the time for them or they may simply give up on putting all that effort in. Maintaining friendships are great for getting us into the outside world, socializing and preventing that hermit mode of isolation that can increase fatigue and encourage depression. They play a far more vital role in our mood regulation than they perhaps realize. Communicating how much you value spending time spending time with them and how important it is for you to remain connected to them can help prevent that disconnect. You can suggest ways to encourage communication with them on days when you are unable to leave the house or suggest a short home visit instead. Help them understand that small ventures are easier for you to cope with, such a going out for coffee or lunch, rather than large plans that take significant amount of effort, planning and could be prevented depending on pain levels. Remember you can make plans with friends that are more costly to you energy wise and pain wise as long as you plan carefully, pace yourself and give yourself the time to recover afterwards. Positive friends should be encouraged and maintained and they will understand your limitations and restrictions if you explain them. Friends that do not believe the extent of your illness or are a constant negative energy drain however you might want to consider rethinking. People with introverted personalities tend to retreat when they are in pain, stress or depressed and also tend not to have a strong need to be around people or socialize, which makes them more likely to go into hermit mode and decreasing all socialization. It therefore might take a little more effort for an introvert to maintain a friendship however it is well worth the effort to do so.
d) Owning emotions: Family members and loved ones can have a lot of emotions to deal with of their own. Emotions they have a right to. It can be difficult to deal with all these yourself. Some can be simply a matter of a) acknowledgement. But there can be resentment, anger and even more. Then with children it can be even more complicated and difficult. Sometimes it is better to do family therapy for a bit to get all the cards out on the table so everyone can say their own perspective. Once it is all out there it will be a relief and from there a therapist will help in ways to cope with those feelings and how to get through it. You can also find ways to find out what you are capable of doing that might work in your household that would help with your family members and not be detrimental to you.

letters to normals
There are some sites that have Letters to Normals. These are letters to explains chronic pain or firbormyalgia to friends, family or spouses so that they can understand what it feels like a little better. It is something you can have people read or have them check out that might help start a communication between you and them. You can also print of a FM fact sheet from the internet as well. With the facts and one of these letters you have a good way to get a conversation going.

And here is a site for a spouse living with someone who has FM: Living with someone who has Fibromyalgia or chronic Fatigue Syndrome

finding umbrellas.

The original quote here is 'life isn't about waiting for the storm to pass, its about dancing in the rain'. And I was like but what if the storm never ends, so this is my take on that.

Chronic pain isn't about waiting for the storm to pass, it is about realizing life is now the storm ... and finding umbrellas.

We have to understand the situation we are in. In a clear and realistic way. I get hoping for a cure in the future, because we all want that, but we have to live in the now. So live with the body you have. Prepare a life with the body you have. Adapt if things get better. Adapt if things get worse.

Finding those umbrellas that make the storm less powerful are vital. Useful coping strategies. Exercise routines we can handle. A good psychologist we can work with. Hobbies we are passionate about. All the things to help us in the storm and decrease our misery in its midst.

Saturday, January 23, 2016

Tope 5 favourite #Somecards I made on #Illness

These are my top five Somecards I have made based on how many times I have seen them posted other places. And they had to have been posted on to count on this list.

 1st place goes to my Lack of Social life meme. It is one of the first I did and it very well liked, you have likely seen it make its paces on pages and groups.

2nd place one is popular in the migraine community and is also old. These days you may see the original or the ones that have been copied using their own photo and my words... so a few of them about. Always loved the way I phrased this.

3rd place one I have seen a few times, not as common a favorite. But individual people like it enough to post it various places.

 4th place I see this one in blogs and in other meme collections like this and posted here and there. People still use this one on a semi regular way.

5th place  one is not a common as my number one, because it is not shared nearly as much but I see it from time to time.

Runner ups:

Friday, January 22, 2016

Medical #Marijuana and #Migraines

I am on a new prescription medication for migraines and FM. The pot pill. Yes, the pot without all the fun stuff. Interesting enough some recently reserch just came out of migraines and cannabis from the University of Colorado.

In the study 121 adults with the primary diagnosis of migraine headache were treated with medical marijuana.
The primary outcome was number of migraine headaches per month with medical marijuana use. Secondary outcomes were the type and dose of medical marijuana used, previous and adjunctive migraine therapies, and patient-reported effects. Migraine headache frequency decreased from 10.4 to 4.6 headaches per month (p<0 .0001="" 14="" 48="" abort="" aborted="" acute="" also="" and="" being="" cause="" common="" commonly="" compared="" controlling="" daily="" decreased="" difficulty="" dose="" edible="" effects="" experienced="" for="" form="" forms.="" forms="" frequency="" headache.="" headache="" in="" inhaled="" intensity="" it="" marijuana.="" marijuana="" medical="" migraine="" more="" most="" negative="" of="" one="" only="" other="" p="" patients="" positive="" prevention="" related="" reported="" somnolence="" than="" the="" timing="" to="" treatment="" use="" used="" using="" was="" were="" which="" with="">
So there was a reduction in attacks. Unfortunately this was marijuana itself and not the pill. There is a difference in what is being processed. So I will see if the pill does anything before moving on to other methods.

Rhyne and her colleagues believe that cannabis offers a natural solution to the neurological disease. Earlier studies have linked chronic migraines to deficits in a person's endocannabinoid system — a group of receptors that regulate mood, appetite, digestion, motor coordination, development, and reproduction. This system also responds to components of marijuana known as cannabinoids.
"I believe this finding helps support further research for the endocannabinoid system and a deficiency in that system, potentially resulting in cannabis offering benefits in patients with this deficiency," Ryne said. What does marijuana does to migraines

Once again Insurance screws with me.

I heard back from my insurance company about my Long term disability leave from August till now. They will pay me from August 24 to Oct 14. last year. And no further. Leaving me quite short from October to January in funds.

This of course would Not have been a problem at all had they not screwed up in the first place and put me on short term instead of long term. I was well into it before they discovered their mistake and said I had to apply for long term, well appeal my long term. I had to return those funds. And it made the process that much delayed. Over $4000 dollars of money in delays I had to put back... before the long term process could even start. Had it started right away it would be done and I'd be back at work already.

I might have to contact the ombudsman about this one since their error cost me thousands of dollars in workable time. And I am not to blame for that. So why should I have to pay for that?

The next issue is the insurance company doesn't see my health as that big of an actual issue, as why they think I should only be off till October of last year. So I assume they think I am find to work full time again, although they didn't say it. But my doc, two psychologists and specialists thing I explicitly cannot work full time, only part time.

Needless to say, I want a response on that issue as well. However, it is causing me to immediately apply for jobs. In this market, next to impossible to do. There are jobs, just not many part-time non commuting jobs. I had heard there were way more part-time but when you look... not at all.

Wednesday, January 20, 2016

Brain grey matter atrophy in Fibromyalgia

There have been brain scans on fibromyalgia patients that have shown atrophy in specific areas on the brain. Does this suggest premature aging of the brain? We have to remember that these are not long term studies. They cannot determine for example if these areas were smaller to begin with which mean they would be more of a risk factor than an indication those areas are shrinking in size. Secondly they do not know the cause of the atrophy in the area. It is seen in other conditions just different locations of the brain. Stress and pain seem to be common factors but what neurotransmitters or mechanisms are causing the atrophy to occurs? Thirdly they do not know the rate of change over time. They have not taken individuals and looked at their brain changing over time and looked at how they are functioning. However, what it does tell us is what areas are being affected by FM and where the symptoms of FM are coming from and this is quite important for future research. They are looking to the brain. Studying it and seeing the differences and what effects that has. Researchers are looking at the where.

The game plan
The study published in The Journal of Neuroscience, 11 April 2007, 27(15) set out to use a voxel-based morphometric analysis of magnetic resonance brain images it see if there is brain atrophy in the brain of people with fibromyalgia. There was reason to believe so based on previous studies. Changes in the structure of the brain like this have been seen in other pain conditions. Since there are similarities with those conditions the researchers believed there might be similar atrophying as well. In particular they endeavored to find out whether FM subjects have atrophy in brain grey matter, in areas that would be involved with stress, pain modulation and pain perception.

The study: Accelerated Brain Gray Matter Loss in Fibromyalgia Patients: Premature Aging of the Brain?
The study included ten patients with fibromyalgia and ten healthy subjects of a similar age. It excluded smokers, use of recreational drugs, alcohol consumption over three times a week, pregnancy, and any major medical, neurological and psychiatric conditions such as depression. The FM subjects were not taking anticonvulsants or antidepressant treatment for their condition.

There was no difference in volume of white matter or CSF in the brains of FM subjects and the healthy controls. The study results indicated that fibromyalgia subjects had significantly less grey matter volume and in fact demonstrated 3.3 times greater age-associated reduction in grey matter. Every year o f fibromalygia being equal to 9.5 times the loss in the normal aging process. The specific areas FM subjects showed less grey matter density where the cingulate, insular and medial frontal cortices, and parahippocampal gyri. According to the study the “The neuroanatomical changes that we see in fibromyalgia patients contribute additional evidence of CNS involvement in fibromyalgia. In particular, fibromyalgia appears to be associated with an acceleration of age-related changes in the very substance of the brain.” The Journal of Neuroscience, 11 April 2007, 27(15
Clearly this study shows fibromyalgia patients have grey matter atrophy that is more than three times the age matched controls. If this were the only study we might be inclined to say it was too small to be demonstrative but it is not alone in its conclusions.

In conclusion
It is a structural change that seems to be a response to how the brain is responding to chronic pain and stress. There are a many conditions (lower back pain, chronic fatigue syndrome) showing similar results but affecting different areas of the brain. What areas atrophy might help determine what the different symptoms we see in these conditions and it might even lead researchers to the mechanism behind the atrophy. Researchers in this study suggest a possible explanation might be “excitotoxicity and/or exposure to inflammation-related agents, such as cytokines.”
They also state it is interesting to note the grey matter loss occurs in areas “related to stress [parahippocampal gyrus and pain processing [cingulate, insular, and prefrontal cortices, which might reflect their long-term experience of these symptoms. Because cingulate and prefrontal cortices are particularly implicated in pain modulation (i.e., inhibition and facilitation of pain), structural changes in these systems could contribute to the maintenance of pain and symptom chronification in fibromyalgia. Furthermore, gray matter atrophy in areas such as parahippocampal and frontal cortices also appears consistent with cognitive deficits characteristic of fibromyalgia.” The Journal of Neuroscience, 11 April 2007, 27(15