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Sunday, June 26, 2016

Exercise and chronic illness

I know exercise is a curse word to a lot of people in the chronic illness community. We are in pain. Why would we want More effing pain? But it is an important part of our treatment. The one I outline above is one I read about for chronic pain especially. It is re-training your brain to push back that alarm of pain, essentially creating a larger pain tolerance. Other would exercise and stop before the point of fatigue or pain. 

So I am writing this now, particularly, because I have begun to exercise again. I stopped when i went back to work full time because I can't do the two together. Too much pain and energy. Then I went on leave and when I came back I went to part time. So now I have more energy and time. It is now the time to add the exercise back in.

Turns out I am back at square one. With FM and hypermobility syndrome back at the beginning is essentially the entire time is painful. Grinding, gnawing horrible knee pain the whole time from the get-go. So I do that for about 2-3 minutes and stop. And this will be my routine for the week until my body begins to adjust to that and the fist minute will not be as painful, then it will be outrageously painful for the remainder of the time.

Took me 6 months last time to work up to 20 minutes of activity, and there was still a lot of pain involved in the beginning, but once your broke through that you could keep going to the Alarm pain. Because the pain is caused by different things. Hypermobility issues for the pain right away in the joints causing me immediate issues. And FM pain causing pain from just doing.

I know exercise is a difficult task. I know it adds pain when we are already in pain. That we don't want to even do it because we know it will be painful. That with exercise intolerance it is draining beyond belief. 

But this is a lifestyle choice we can make. It often shows in studies as improving various things from insomnia, to mood, to migraines and FM. I'll take it if I get a result on just something. 

  • But it is difficult- overall it is. But in slow increments it is easier to attain.
  • It adds pain- The idea is to not add pain, so you never want to get to that point of pain. Just feel it and stop. 
  • It add pain the next day- Which is why that is a down day. You can on this day do gentle stretches to ease the muscles and take an Epsom salt bath.
  • It causes immense fatigue- if this is the case, exercise to the point of fatigue and stop. Let that be your set point. 
  • You don't think it has a benefit- It does have a benefit to your health. Chances are it is going to change something for the better. Maybe the thing your doctor even said it would. Maybe something else. It certainly will not hurt you, if you do it carefully and slowly.
  • I feel like it might hurt me- If you feel that you might injure yourself doing exercise then you should go to your doctor and ask to be sent to phyio where they can give you are routine to build up specific muscle groups to help with your exercise.
  • I lack the motivation- I generally reward myself each week of success have have with something simple. Helps encourage me. Other people exercise with people as that tends to help. Or have online exercise buddy to motivate each other.
  • It isn't fun- Nope it is not. Therefore it is best to play some music you enjoy. Or do it in front of the TV. If you go for walks music or audio books is great. For the stationary bike I prefer music.
Also remember:

  • Be patient- it took me a month of riding a stationary bike at 10 minutes to get past that point from a pure muscle fatigue point. Not even to the pain issue. My timeline I was given to get to an hour of exercise was more than six months of consistent exercise by the pain clinic.
  • Allow yourself pain days- there is no point in exercising on high pain days. And no reason to feel bad about ‘ruining’ the routine. As far as I can tell I have no routine but I still manage three to four times a week. Just so happens it changes a lot to what time of day and which day of the week it is. Nothing wrong with that.
  • Don’t let anyone say you are going to slow, not doing enough, not doing the right sort. Any activity is actually good activity when it comes to chronic pain. It is all beneficial to us. Maybe not what some doctor read in his study, but you know I read a study that said 20 minutes of walking had a great deal of health benefits.
  • Never compare your progress to others- other people have different bodies, different levels of different conditions, different timelines. I know of some people with fibromyalgia that can exercise a lot and I am vastly impressed given my awesome start time of 10 minutes on the stationary bike but it is what it is. I have more than one pain condition and my pain is just at that point. I have to look at my progress day by day and not anyone else. Then when I got to 20 minutes I did a happy dance because it seemed like an insane improvement to me, relatively speaking.

Thursday, June 23, 2016

Knowing your genetic risk

"I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. "

 I had this great opportunity to do a genetic test with Futura Genetics to test predispositions to specific conditions genetically. Of course, there are a lot of other factors but it is interesting to know your genetic risk factors as that is a rather embedded risk factor. I have always wanted to do this. My mom had done one once and I have been fascinated since then. Hers by the way showed a genetic risk to breast cancer and she recently just won her battle with breast cancer.

So why did I want to know? Essentially for me it is a knowledge is power sort of deal. I am chronically ill. And I know that this does not prevent me from gaining other illnesses. Quite the contrary it seems to me. Seems like comorbid conditions just spontaneously crop up in bundles.

1) The family history you didn't know: There are some risk factors in my family history I know about. Some I have no idea if they are risk factors for Me. While others may be there and I have no idea. This sort of gives you an idea of the history you are not aware of.

2) Know your risk factors for prevention: Knowing enables you to engage in prevention you might otherwise not have considered. Simply put if you have no idea you are at risk for a certain disease genetically or otherwise, why would you even engage in preventative measures specifically for that condition?

3) Watch out for early signs and symptoms: This is an important one for some diseases. Early signs and symptoms means early management. Just being cognizant of certain potential conditions you are more at risk for means in the future certain symptoms may not slip your notice. Being chronically ill... well I generally do let some symptoms simply slide if I don't rank them as important enough. And some other ones if they are pain related I just simply assume they are related to existing pain conditions. Others I may wait to 'see what happens'. But if I am aware that a condition is a risk factor for me, I will put more emphasis on its importance in regards to mentioning it to my doctor.

4) Informing my doctor: This will be a tool for my doctor to use in regards to my future risk factors.

How it is done:

Monday, June 20, 2016

Tips for when you are in The Flare

I am in a Flare. The pain arching through me right now is difficult to describe to be honest. It is a deep, bone deep, throbbing ache that is at around a 8 on the pain scale. It is extremely distracting. It is gnawing. Grating. And that is when I am not moving. Moving is another story altogether. 

In this particular case it is from weather changes. We have been having hot weather and flash thunderstorms so the pain as a result as been pretty intense. Migraines, as you might expect, following suit.

It isn't only the specific keyed up areas of pain though. It is the body aches as well. Feeling just run down. And the extra bonus of fatigue. Not your normal fatigue... more bonus fatigue. Like the extra bonus pain. A flare-up is just FM Plus.

I am currently on tramadol slow release for my actual treatment, so I have nothing for a flare-up per sa. I have to work tomorrow so rest is out of the question. As is stress avoidance. So I'll be waiting it out. The approach I most often take, unfortunately. 

For me most flares come with overdoing it. I have limits, I just sometimes am not positive where they are or ignore them. Or, worse, the limit changes. One day I can walk for an hour with no consequences. The next day 15 minutes causes extreme pain and that pain increases exponentially the more I walk. So I engage in an activity, in moderation, expecting it to be fine and it is So not fine. FM can be unpredictable like that. 

Poor sleep is another common one for me. But it is unpredictable. Often is is more than one day of poor sleep that flares me. One day? That is par the course. And yes, it causes aches. But not flare-up pains and aches. Not FM Plus. But a few days of severely deprived sleep and I will flare big time. Even laying in bed to continue trying to sleep is too painful then.

When having a flare-up here are the tips:

  • Taking breaks- since they tend to occur during high stress we tend to not engage in self-care. If we just push through, we pay for it. We should try to help from others, at work as for extended deadlines and reschedule the things we can. Try to reduce the stress factors we Can. Take breaks during the day. Take short naps.
  • The say 'no' tip- In times of Flares it is really important to conserve your time and energy reserves. No, you can't take on extra work. No, you can't do that favour for a friend or the school. No, you an't babysit at this time. You don't need to use an excuse, because you don't need to validate your illness, just a polite not at this time. You just cannot take on any more at this specific time.
  • Sleep- Sleep is always a factor for us. And adequate sleep is more important during a flare. Keep to a regular sleep cycle. Get 8 or 9 hours. Only take short naps during the day, as to not disrupt night time sleep.
  • Relaxation- Take time for mindful meditation, relaxation breathing or biofeedback... whatever works for you. As well as any pain distraction methods you use; like soothing music, reading or binging on Netflix.
  • Pacing- We can keep doing activities, at a slower pace, which has been found to be better than no activities at all. But we need to know our limits. Slow and steady. We can incorporate some very gentle stretching, walking or light yoga. If you have an exercise routine already, consider decreasing intensity during a flare.
  • Pain management- Use your medications following the schedule you use to manage pain. If they are not sufficient ask your doctor about breakthrough medications. Use alternative treatments you might find effective; acupuncture, massage therapy, biofeedback and other therapies to help with pain management.
  • Support- Flares are an emotionally heightened time and can be difficult to deal with and sometimes talking about it helps. So utilize any support groups you belong to. Either online, in real life, or the people in your support system like friends and family.
  • Baths- I always recommend a nice soothing Epsom salt bath to ease some muscle pain.

Generally you want to engage in your Self-care. You don't want to stop your routines, but be gentle and careful. Self-Care is vital at this time. Take things more slowly and methodically. Be gentle with yourself. Pace yourself. 

Saturday, June 18, 2016

The Fibro-Fix Summit reminder post

So the Summit is almost on us. Time to sign up for free now if you want to attend. I will be posting the speakers on my Facebook page as the days come up so you can see who to check out.
SUBJECT: Misdiagnosis and improper treatment of fibromyalgia is rampant!
At The Fibro Fix Summit, you’ll learn why proper diagnosis and treatment of fibromyalgia (FM), as well as other fatigue- and pain-related disorders, is a neglected and poorly understood niche in medicine. These experts will discuss FM and the many disorders improperly labeled as FM, to provide real action steps and solutions.
Your host, Dr. David M. Brady, is an internationally recognized expert in fibromyalgia and a staunch patient advocate for those who have been struggling because of a medical system that is ill-equipped to deal with the problem. Join him and 30+ experts for this iconic event that could change your health and your life!
Register for FREE now at the following link:HERE
Own all of the expert talks to watch at your own pace:HERE
Attend The Fibro Fix Summit if you are suffering from:
  • Body-wide Pain
  • Persistent Fatigue
  • Unrefreshed Sleep & Insomnia
  • Depression and/or Anxiety
  • Irritable Bowel Syndrome
  • Thyroid and/or Adrenal Dysfunction
The Fibro Fix Summit is online and free from June 20-27, 2016!
Register for FREE at the following link today:HERE
Own all of the expert talks to watch at your own pace:HERE
I’ll see you at the summit!

Friday, June 17, 2016

6 things for the heatlhy in our lives to know about chronic illness

It isn't always easy to be a friend, loved one or family member to someone with a chronic illness or chronic pain. It isn't easy to forgive plans missed. Or when they seem to never want to engage in activities. You wonder if it is you. You wonder if they are becoming too reclusive. You might even tell them they need to get out more.

Frankly the truth is getting out and socializing is very important to us. It helps us with our mood stabilization and sense of isolation. Sometimes though it depends on what it is the plan is for. We may very well say yes to playing cards at a house, or going for coffee or having a BBQ... and no to going to a concert or the bar. Depending on the day one thing may be too much. Desire isn't always the factor we have to consider. We want to be out and about. To see our friends, spend time with our partner and spend time with our families. If you take anything from this, never doubt that.

We have immense guilt when we feel we are failing our loved ones. When we miss plans. When we feel we are not being there enough. When we are just not Enough.

It is really easy to understand a person with chronic illness and chronic pain if you know a few things.

1) Think Tortoise: You are the hare. We are the Tortoise. In this lovely fast paced hectic society you can keep pace, we cannot. We have to pace ourselves. We have to take breaks. One example; have you ever cleaned your house in a massive clean-a-thon? We would never be able to do that. We have to pace all housework. A little each day. Some days, bad days, none at all.

2) Think Moderation: Ever thought well, on the weekend I will catch up on the housework, take the kids out to the beach and then go visit the parents... just pack in some things for fun? Not us. We moderate our lives and that includes all activities. Think of it like having a full tank of gas vs having a 1/4 of a tank. You can get a lot father than we ever can, so we are careful of what we plan because we only have so much energy to get there with.

3) Think worst day ever: If you imagine the worst you ever felt. Like maybe the worst stomach flu ever and times that by 10 you might imagine us on a bad day of a chronic illness. With chronic pain, well lets just say that is epic pain level days. We have these epic bad days. And on these epic bad days we cannot function.We may have made plans and we may have really wanted to do those plans but suddenly we cannot do a damn thing.

4) Think exceeding your limits: Imagine you have not exercised in a decade and then you went to the gym and did a 2 hour workout. Imagine how you felt the next day. Every muscle on fire and walking like Frankenstein. If we do not follow 1 & 2 we exceed our limits and when we exceed our limits we end up Flaring and that is what it feels like. Like your body just said Nope and suddenly you are in 3 and having a really bad day all because you didn't follow the chronic illness rules of pacing and moderation and limits.

5) The life: And this is the life. We always have baseline pain, fatigue and symptoms that are bothering us. Sometimes they are worse than others. Sometimes much worse. And the best we can do to cope is do our best to maintain. Pacing. Moderation. Not exceeding our limits. We do this and we have a life, but like I said, we are the Tortoise, man. We plan do do things when we have down time after. What we plan to do depends on many factors; how taxing it will be, how much energy it will take, how far always it is because drive time takes energy and what medications we will need to bring just in case.

6) Lifestyle: As long as you understand the above you will understand why we miss plans. How we set out plans up. Generally how we pace ourselves when we do things. Why we turn down somethings but not others. How careful we have to be. The other aspect to our lives is all the things we do to help manage our condition. These vary from person to person but can include: alternative treatments, vitamins and supplements, exercise, physio, meditation, biofeedback, psychologists who specialist in chronic illness and coping, medications. This is the Lifestyle. This is all the things we do to help maintain as best we can. We don't need advice about it, because we have likely done it. It is merely the things we have established with the assistance of our doctors to help maintain the best quality of life that we can.

Never stop caring. Never stop loving. Never stop inviting us into your lives. Just understand we live the chronic illness lifestyle and it is just a little more careful, energy conserving and has some defined limitations we have to manage. But we want a life. And we intent to have a life with out illness.

Wednesday, June 15, 2016

Touch of madness

I used to say it is literally insane to try and function through the pain. What I really meant is it is insane to exceed our limits because society demands it of us. Doctors, insurance companies, family or loved ones may demand it of us. And it is impossible to cope with riding that edge of pain like that. Insanity. Something needs to be adjusted in order for us to cope with that. I personally adjusted in a few ways but one of them is not working full-time and that is still pretty damn taxing.

But I have decided that a touch of madness is needed to just plain adapt to the insanity of functioning through pain at All really. We have this amazing capacity to adapt to pain. I mean, I exist in pain levels that my younger self would curl into a little ball and refuse to move under. While this isn't exactly an awesome superpower it is a fundamental adaptation if you have chronic pain. As far as I can tell I wouldn't get very far curled up in the fetal position all day long. 

So what do we do? How do we Do this?

1) We sort of lie and nudge ourselves along- We lie to ourselves a lot. And we make ourselves believe it long enough to get through that thing we have to do. Just need to get out of bed and it will be all right. Just need to get dressed. Just need to get to work and once I am there it will be fine. Just need to get through this hour. Just need to get to lunch and I can have a break. Just need to get through a few more hours and I can get home. Lie, lie, lie. Sort of just nudges to get ourselves to certain goal points really. 

2) We create facades- We create entire alter-selves in order to cope with functioning. Because pain sucks and having to cope with pain while out in society sucks even more. So we adapt by presenting ourselves in a certain way. My favorite is I created a stronger sense of humor. I smile and laugh. This puts me in a good mood. Makes me believe it as well. It masks the pain incredibly well. I am able to function better. I don't put all that negativity on myself, which inevitably makes me feel worse when I am in pain... so I am essentially faking myself out. Like that study that said even faking a smile makes your brain release the same happy chemicals as a real smile... I just presented myself that way until I felt that way. Makes my day better than the sarcastic, negative person I generally am. Because That person doesn't cope with pain quite as well. 

3) Gallows humor- We all seem to develop wonderful gallows humor. I once had someone ask me why I laugh at myself and my illness the way I do. Why I make 'such jokes' about my illness. What can I say to that? Almost want to quote Lincoln on that one. "I laugh because I must not cry. That is all". I find gallows humor about my illness funny at least. And for some reason it just pops out. Can't say everyone finds it funny. That is just too bad. If you can't laugh at yourself, who can you laugh at? If you are in a hard situation long enough... you learn to laugh about it. But generally that sense of humor about it is truly only enjoyed by others who suffer as well. 

4) We do weird things in the name of pain- We will damn near do anything if it helps with our pain and screw anyone that thinks we are weird. I slather this Japanese mint oil all over my forehead, temples, and down my jaw. I constantly smell of Japanese mint oil. It is now my official fragrance. I meditate. And while that isn't weird... I would never have meditated a day in my life if it were not for pain management telling me I had to. We pick up hobbies to distract ourselves from the pain. New hobbies we never had or even thought of before... just because focusing on something Else helps. Like knitting. Suddenly becoming a knitter. Or coloring. Which is a fad now, so we seem cool doing it but we are just trying to mellow our brains. We will try anything that helps the pain and anything that distracts the brain. Imagine for a moment if you listed all those things if someone asked what you like to do for fun? "Well, I meditate, color, Netflix binge, took up painting, do poetry, blog, write novels and I was thinking of picking up a hobby."

5) and finally we have a touch of madness for the routines we have to cope with pain.- We exercise. Meditate. Do physio work. Maybe biofeedback. Take vitamins and supplements. Take our medications. Take walks when we can (to get some fresh air they say). Special diets. 

But you know I think it is just that touch of madness, that spark of insanity, that gets us through the pain. We have our own way of existing in the world for sure. And I think it takes this to get though a mad world. To survive a mad world, and function in it, we need our touch of madness to get us though. Madness that say I can cope today, because I coped yesterday and I will cope tomorrow because there is that thing I want to do. Madness that says you will cope or Society Wins, and can;t have that now can we. Madness that says this is my life and I deserve to live not survive. Madness that says pain should be treated not ignored. That touch of madness knows society is insane, we just have to have a touch of madness to endure it.

Tuesday, June 14, 2016

Things I want people to know about my invisible pain

My pain may be invisible but I am not. I am a whole person aside from my pain who deserves to experience life.

1) I want doctors to understand: I want to have quality of life to be able to function in enough capacity to live a decent life. And I fully expect them to assist me with proper pain management. I understand pain is complex and the treatment of it is likewise complex. I will do all in my capacity to follow their instructions and do what I need to, to manage the pain and reduce my suffering. If they are willing to assist me do this.

2) I understand the invisibility: I get that people cannot see the pain. I have been called stoic so often it isn't That amusing. It is simply a matter of this: with acute pain there are some obvious behavioral pain indicators people are tuned to pick up and with chronic pain we lose those. We lose those because we are in pain all the time. It is the name of the game for us. Those become redundant. However, we have a new set of pain indicators unique to us if you Know us. For example I rub my neck with a migraine a lot. I shift position with Fibromyalgia pain frequently or begin to move slower. I wear tinted glasses inside and sunglasses and/or a hat outside because of the migraines. We have our tells. They are just different than the other ones.

3) I understand the confusion: We become less invisible during flares and severe pain levels. This is often when people think we are in pain. We try to explain we are always in pain. But they say we were functioning one day, and not the next. We were smiling one day, and then all pain faced the next. Pain has variability. And we ourselves have pain limits. We have baseline pain that is always there. We have pain we consider functional with. We have pain that is hard to function with. And we have pain we Cannot function with. Pain that is tolerable and pain that is intolerable. Just understand we ourselves cannot handle all levels of pain we experience. We cope the best we can, but there are limits to that.

4) Coping isn't quite that easy: Frankly I want people to understand coping with pain is extremely difficult and sometimes I do not cope well. It is an endless battle with no victory and I get tired. It is an unseen battle and it is exhausting frankly to live in a society that is not paced for the life I have to lead. Coping isn't a linear event where you work your way to acceptance and just settle in for the ride. Life isn't like that and neither is coping. We can get caught up in depression bouts. We can get angry and frustrated. We can even go back and start with denial all over again when we insist we can do something we want to achieve, even though we know we have limitations... then this leads to angry, frustration and depression when we ultimately realize we simply can't. This is not to say we can't overall be in a place of acceptance. It is just that life is complicated and so is coping. There are rough days and times. Pain is a demand on the senses and it demands attention. It demands a lot from us and this can be extremely taxing.

5) Facade: I want people to know I fake being well all the time. I mask the pain and I do it very, very well. Primary for the benefit of others. For employers, co-workers and customers because at work you have to have your game face on. And for loved ones, so they do not see the extent of suffering. For my doctor so I do not get stigmatized as a drug seeker, a chronic complainer or as exaggerating. In a sense this does contribute to a sense of isolation and the fact that no one can see my pain, but it is the only way to function in society with chronic pain.

6) Depression complicates things: Depression from pain can occur due to the fact pain is difficult to cope with. Faced with an indeterminate lifespan of pain (decades and decades....) having already experienced decades it is easy to feel hopeless. High levels of pain can really cause deep depressive episodes in me and really dark thoughts. I see a pain psychologist for this and take medication as well because managing my moods is an important factor in managing my capacity to cope with the pain.

Monday, June 13, 2016

A paint nite out

I went to a paint nite with a friend and it was quite fun. We unfortunately picked an intermediate painting for beginner skill level, on my part at least. Not to mention with my never damage I suspect I will never be a true to form painter... more abstract will be my thing I suspect.

Nevertheless if they offer art therapy here I have decided I would go for that based on this very interesting experience. But they, of course, do not.

It was social and relaxing. And I realized being the perfectionist I am I would never realize the perfection in my mind... and I was cool with that. You paint based on an image, you see, and this is my sort of distorted representation of that image. They give you steps up to a point anyway. Then it is just use your creativity. And thus my masterpiece.

I decided to do this because I wanted to get out and socialize for one. And I thought it would be fun to experience. And it was.

Yes, I indeed had a migraine and, yes, my FM has been acting up lately. But this is not a reason to prevent me from doing something I have always wanted to try. Just to try it. Had my pain level been extremely high that would have been a different matter. But it was in the range of 7ish and I can tolerate that just fine. I had after all made it through work. Why not do something I would enjoy? Or at least hope to enjoy?

I feel it is a majestic piece of artwork because I made it. And I am going to damn well hang it on the wall as well. I believe my friend to the left on this photo did a much better job than I... some serious talent consider neither of us have ever done this before. She has a better eye than I do. And steadier hands as well. Either way, it is great to have that time to spend with friends.

Sometimes you just have to understand the pain will be there no matter what you do, so do what you please... within moderation. If you choose an activity you can do, all the better. This is an achievable activity for me.

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