Wednesday, September 17, 2014

#Scent sensitivity and cleaning

With chronic pain I find some things difficult to do. One of those things is cleaning the house. I do it in a sort of slow rotation. I do know this though, it is cleaner than it ever was when I was working because I was never capable of much at all while working. All that pain tolerance just to get through work and nothing left over to clean or cook or move. So it is better. I'll say that. But by the time you get through any sort of rotation, you need to start over again and nothing is ever as clean as it could be. But you do the best that you can and I am glad for that fact.

You also have to be insanely careful of the cleaning product choice. Scent sensitivity will get you every time.

With chronic migraines and fibromyalgia both strong scents just do not help the situation At All. I have a brand I use and I stick with it. Cannot stand things like lemon scented cleaners for example. Or bleach, that is horrific. But occasionally if you clean too much it is just inevitable it will be an issue.

Now I have company coming to stay with me next weekend so in preparation for that I have slowly been cleaning a little more than I usually would each day. It has already caused some issues. Today I woke up with a unrelenting migraine that got worse as the day progressed. Because I made it worse. I did some light cleaning knowing I would be unable to exercise so I might as well accomplish some of my cleaning goal. But the smells, oh the lingering smells got to me good. I swear I can still smell it all. And my head cannot handle it. I tried to treat the migraine earlier and it was not going for it. One thing about scent issues is nausea. The nausea just gets to you. So I have this 9 migraine and a lot of nausea. Not sure it was worth the light cleaning to be honest but with chronic migraines I always feel like if I do a little something each day then that in-itself is an accomplishment. Some days though, I know, I should just rest instead because the pain intensifies too much.

Still I did attain some good progress yesterday towards my goal so that is something. If I do a little each day then the house will be tidy at least. And key areas will be clean. And that is all I can ask for to be honest.

Monday, September 15, 2014

Cats know what I am feeling #rest #days...

There are days...

When I just want to be a burrito...

There are days...

When I want to find a dark place to hide...

There are days...

Yes, there are days,

When I just want to be alone.

You know what I mean?

Friday, September 12, 2014

National Invisible Illness Awareness Week: That time was a good one #invisibeillness

I am blogging for National Invisible Illness Awareness Week. The topic for today: just one memory you made that you treasure, despite how much pain you were in.

I have more than a few memories I treasure despite the pain. There are times when we do things even though we know the consequences of those actions. Or times when we want to establish memories with our family because it is important to us.

I look back at a time in my life that was very important to me but also quite difficult in terms of coping with the pain. I was newly away from home which is difficult to adapt to on its own but adds a new edge to coping with pain as you try to establish limits and moderation. Not to mention I was developing migraines on top of the fibromyalgia at the time. This would be for my undergraduate studies at a small university in a small city near to where I grew up.

I treasure this time for many reasons. Mentally I thrived in that academic enviroment. So the experience is something I will always remember fondly. The knowledge something I will always value. The life experiences something that I really rather enjoyed. I may have had to live within limits and moderation... but I lived. I enjoyed. I had some fun in my twenties with my peers.

It was also when I met my spouse so I will always remember that time fondly. Those are all extremely good memories to me. It can be difficult to meet someone with a chronic illness. To figure out how to even date them in a way that works within your limits but we did and it worked for us. We went out on days when I could. Stayed in we, with my roommates, would play a card game called canasta instead. I know, wild and crazy nights. Understand though, I had to live within moderation then and now.

My spouse and I took a trip together to Halifax back then which is another memory I quite enjoy. There was pain. I remember that from all the walking. There were migraines. I remember that from timing when I could take a triptan. However, there was also a lot of fun stuffed into that visit as I met his family and childhood friends as well.

When we look at the past nostalgically it is not always 'I can no longer do want I once could' or 'look at all the compromises I had to make' or look at all the possibilities I had to loss due to my health'. Sometimes we can look at our past and see what we could do with our health. The good memories. Our family. Our friends, Our spouse. How we were able to work with or around our illness. How well we coped. Or how we were able to cope better. The new coping tricks we picked up along the way. The fact is we learn all these ways to cope and utilize them, never looking at how much better we get at it... we always look at what we fail to do, not at the successes.

Tuesday, September 9, 2014

#triptan and heart skipping not fun

While on holidays I had one hell of a migraine day that required two triptans to even just somewhat manage. I have issues with triptan side effects. More so when I take more than one a day or for more than one day in a row.

It did come to some surprise though that while on the road the next afternoon while driving home I got that skipped heart beat sensation. A lot. As in it just kept happening. It would not stop. In the middle of nowhere of course. It kept at it for hours. Then seemed to slow down, but kept happening all night long. And then the next day. The key thing I think about it happening the next day though was that the triptans should have been well out of my system by then.

However, I discussed it with my doctor today and while it does seem odd we cannot think of what else it can be from. I do get that reaction from a few other medications, but not any I have taken in a long time... because of that side effect. So, not that.

It also occurred a few times today, but sporadically. When I went to the pharmacy I checked my blood pressure and it was 106/47. Another theory might just be blood pressure related I suppose given when the second number drops below 55 I start feeling pretty rough.

There is little point to try and catch triptan side effects on an EKG though for two reason. A) they are sporadic. Sometimes it is a crazy flutter every half hour and that is not something they are going to catch. Sometimes it goes nuts for a half hour and by the time I would get to the ER it is done its little hissy fit. While other times, well, it can be more enduring. B) my doctor and I both agree that being taken off the triptans altogether is a bad idea, because triptans Work. They work substantially better than anything else. So she just told me to continue to use them rarely and to Not use them twice a day again.

I have in the past worried a great deal about triptan side effects because when I use them twice in one day or in consecutive days I can experience some pretty freaky things. Really not something you want to deal with. Especially when you 'don't want to make a fuss' and go to the ER. Now there have been times, where, yes, I have gone to the ER in the case of angina and times where I have not. Generally though most triptans, aside from Imitrex, do not give me That kind of angina. More commonly I have breathing issues, which let me tell you is not fun waking from a dead sleep with. Fast heart rates or slow heart rates. Palipatations and skipped beats. All of which vary in intensities. Thus when I take two... gets worse.

I have seen an improvement by taking them rarely. I still get very run down because it does affect me to some degree every time but I have no cumulative effect going on.

I think what always concerns a person is what if something like that is not in fact a medication side effect? What if it is just an actual effect? Of something else entirely. I think in this case no way to know that sort of thing to be honest. Unless that sort of thing happens when I have not taken the triptan at all. Even so, I find it pretty suspicious I keep having this particular skipped heart beat sensation 'side effect' 'medication sensitivity' lately. I think the only way to really show one way or another is to document it, but like I said, that is tricky. I suspect I will have to wait for another event like this last one and go to the ER about it, no matter what, just to have it on file.

#invisibleillness week: Advice to those with #migraine brain pain

I am blogging for National Invisible Illness Awareness Week. The topic for today: just one bit of advice you would give to someone with a recent diagnosis.

When it comes to chronic migraines my advice would to be proactive and aggressive with your treatment. When you have episodic migraines they are well managed but then while they go into that process of becoming chronic we become well aware they are not. However, we do not know what to do about it. We often do not have that much knowledge of migraines at that point because we did not need to know that much.

The biggest mistake we often make is that we believe our doctors, or neurologists, when they say 'this preventative will reduce the frequency or intensity of your migraines'. They neglect to say it may do nothing at all and you may have to try many more to get any effect. They neglect to say when you do find one that does anything at all it may only last for a few years and then fade off. They certainly neglect to mention that preventatives At Best have a fifty percent reduction rate with migraines, and very rarely do we see Best. So often, we remain chronic. They definitely neglect to say that. So we have this assumption they will give us an effective medication and we will go back to having episodic, manageable migraines. Only to find out that is not true. Only to find out that we cannot even take the medications to treat the migraines we actually get often because there is a defined limit on the amount of those medications we can take in a week, no matter the type... meaning many migraines must be simply endured.

What does that mean? It means in the beginning, right when your migraines go chronic, if not even before when they are high episodic be very aggressive with your treatment. Do not be afraid to research on your own. Do not be afraid to try as many alternative treatments as you can like biofeedback and meditation. Ask about lifestyle changes you can make right away and make a plan to achieve those goals over time, because trust me, some of them can be very difficult at the daily migraine stage. Do a migraine diary that thoroughly tracks your migraines, including food triggers, because this will become more difficult the more migraines you have... but eliminating some of those hard to find triggers can be beneficial. My advice is try to approach chronic migraines on many platforms and angles because just medication rarely cuts it.

When you are high episodic you should already be aware of preventatives, but the fact is some of us go on them very late, which is also not good. Being on them as soon as your migraines get into that regularly monthly range is a good idea. I believe they recommend at even over three a month. I was not put on them until around ten a month. So early treatment is better treatment. However, there are few preventatives that are classed as being moderately effective to be honest. That would be those with the best case scenario of 50% reduction to frequency. And I have rarely encountered anyone who achieved that success rate. It does happen though. However, people also have success with exercise, diet changes, trigger management, biofeedback and mediation and many things combined. Trying to find the combo though is a lot of work, so the earlier the better.

Monday, September 8, 2014

National Invisible Illness Awareness Week #ChronicIllness

I am blogging for National Invisible Illness Awareness Week. The topic for today: just one decision you made that was good (or not so good)

I think when it comes to our health this topic could go on for quite a long time as I have made very good decisions and very bad ones.

So I will go with the most recent good decision.

I recently had to go on a long term leave from work. The process of which required me to choose to find a adequate doctor who was interested in my health needs. It required me to find a psychologist to help me with coping with the chronic pain. It required going on short term leave and then going through the process for long term.

It was a decision that had a lot of factors that were out of my control in fact.

However, the fact remains that I needed to not be working. The fact remains that I was not functioning at work. I had about five or more short term leaves in seven years there. That is not functioning. I averaged a minimum of three sick days a month... not a year and that was in a Good year. That is not functioning. My mental and emotional health was extremely low. And that is definitely not functioning. Yet for years I pretended to function because I felt that is what was expected of me and that is what I needed to do.

However, to survive I needed to not work full time with that company. So that is the best set of choices I have made in a long time. And that set of choices and decisions has led to better treatment and to being at a pain clinic and a new neurologist.

It is not an easy decision by far. It is difficult to not work. One has to cope with the guilt. With trying to find new meaning in your life. To reassess ones self-worth in new ways. It changes how you view your identity. I am told I may be able to work part time in the future so I have been trying to think of ways I will be able to do that.

Sunday, September 7, 2014

gastrointestinal symptoms, #IBS and #FM

Often when it comes to gastrointestinal complaints and fibromyalgia we get diagnosed with comorbid IBS with little investigation into it but there can be other underlying causes.

Fibromyalgia syndrome is characterized by chronic generalized pain accompanied by a broad symptomatologic spectrum. Besides chronic fatigue, sleep disturbances, headaches and cognitive dysfunction that are extensively described in the literature, a considerable proportion of patients with fibromyalgia experience gastrointestinal symptoms that are commonly overlooked in the studies that are not specifically dedicated to evaluate these manifestations.

Nevertheless, various attempts were undertaken to explore the gastrointestinal dimension of fibromyalgia. Several studies have demonstrated an elevated comorbidity of irritable bowel syndrome (IBS) among patients with fibromyalgia. Other studies have investigated the frequency of presentation of gastrointestinal symptoms in fibromyalgia in a nonspecific approach describing several gastrointestinal complaints frequently reported by these patients such as abdominal pain, dyspepsia and bowel changes, among others.

Several underlying mechanisms that require further investigation could serve as potential explanatory hypotheses for the appearance of such manifestations. These include sensitivity to dietary constituents such as gluten, lactose or FODMAPs or alterations in the brain–gut axis as a result of small intestinal bacterial overgrowth or subclinical enteric infections such as giardiasis. Prohealth

In my case I was diagnosed with IBS initially with little investigation then years later, after having a ulcer with NSAIDs and a continued NSAID sensitivity afterward they looked into the IBS more because it presented as IBS-D and not as one might commonly see as fluctuating IBS or the more common IBS-C. In which case I got to experience the barium test again as well as a colonoscopy. But they also tested me for celiac and for lactose intolerance. That does not mean to say I could not still be gluten sensitive, as that does not show on that test, or that a FODMAP diet could not benefit me but that they did not look into those issues. 

You do have to wonder at the cause of this symptom though. I will say it was not an initial symptom of mine. It came a few years past my actual diagnosis date, which means well after onset of the FM itself. But when the onset did occur it was pretty consistent from there in. We definitely do have a comorbid IBS occurrence but whether there are further issues at play is hard to determine.

Took a trip into the mountains

I took a road trip into the mountains with my spouse and family for a week to a cabin that my uncle owns. The drive itself was awesome. I love the scenic route into the mountains. The only issue I had was that the drive gives me vertigo well into the next day, so for most of the trip actually I had lingering vertigo but not much I could do about that. and we broke the trip into an overnight stay. The cabin is right lake front. Lovely area.

from the deck

Me on the lake from the canoe
from the dock

It was clouded over one day, which my brain rather liked. My spouse took me out on the canoe and everything. The next day, man it was bright. Great for everyone but me. We went out on the lake again but this time I got a massive migraine. Two triptans, a pain killer and a nap later and I sort of got it down to a dull roar. Even went for a short swim. But it came back. Sunlight is a brutal beast for sure. Still I got out there and got a nice tour about.

My spouse and I found Skaha National Park in Pinticton and took some of the trails there. For a short little walkabout anyway. I can't walk too far but it is nice to get some of my exercise in there in a nice scenic route. This was the overcast day so it was good for it.

On the way home we took two days to get home, taking a stop over as well to break the trip up. This is because I do not drive due to the vertigo situation and my spouse does all that driving himself. We stayed in a nice motel up in the mountains close to Jasper because we wanted to go on the Glacier Sky walk. It is something they built recently that hangs out over the mountains and has a see through floor, so you can see right down. Awesome view as well. 

It was a good trip. Nice and mellow really. We relaxed mostly. Even played some cards to just chill. I read a good book. Got some good activities in there when i could as well. But there was a lot of migraine activity on this trip for some reason. Not sure why. Maybe just sunlight.