Talks you may enjoy.

Here are some videos posted on the website for the National M.E./FM Action Network in Canada.

http://www.mefmaction.com/index.php?option=com_seyret&Itemid=211&task=videodirectlink&id=115

They are from the IACFS conference that took place in Ottawa, Canada in 2011.

I had fun watching the one with Dr. Bested (my specialist) who talks about pacing, and even sings a song at the end (sound recording is terrible so hard to get through). But it made me smile.

I always love watching Nancy Klimas, she is always so upbeat and positive and even if I'm feeling jaded and cynical about having M.E. and the plight of sufferers, and the abominable funds allotted for research, I feel uplifted and hopeful when I watch her talk about the research.

The great thing about these talks is they are short (20min) so you can watch them here and there. I was especially impressed by Staci Stevens who talks about the physiology of exercise and activity intolerance in M.E.

In fact, it made me feel pretty badly about my tendency to overdo so much when she puts it in the terms she does - a broken system, an inability metabolically and aerobically to create energy. I wish some of this knowledge and research trickled down to the hands of physicians so we weren't told to "exercise". And in Stevens' talk she outlines some ideas for building strength and endurance and she obviously understands the disease and lack of functional capacity.

I also picked up some useful coping tidbits from Fred Friedberg, I wish I could have him for a phychologist.

Final decision: It's a virus.

It's so funny how similar M.E. is to a viral infection....it really makes me think. Either M.E. is an infection, or else something very closely related (at least in my case).

My roommate came down with a nasty cold last week and stayed as far away from me as is possible in this house (partly because my labs recently showed a mildly low WBC).

So all this week I've been a little more achey than usual, with a l.g. fever, and pretty bad chest ache - all symptoms I get with M.E. It seems like every hour I changed my mind "It's just M.E., no, it's the cold, no, it's just M.E.". Yesterday I went to bed deciding that it was "just M.E." due to the fact that I have not had any congestion....only to wake up with a productive cough.

Turns out I have a cold virus. It seems to have seated itself in my chest from the get go which is unusual for me. Well, it makes me think that M.E. for this individual must be VERY VERY closely related to a virus.

Another interesting find that I've been pondering this week.

When I get low grade fevers (probably 5-10 days a month) they tend to peak in the afternoon and go away in the evening. I was considering how strange this is so I googled it and guess what? It's typical of a mononucleosis infection.

While there is still debate whether or not Epstein Barr virus (the virus that often causes mono) can be chronic or not, it was the infection that triggered my M.E. My specialist thinks that I often have what she calls a "reactivated infection" and I think, despite the contradictory science, that I'm in agreement.

I haven't felt inspired to blog here, partly because my life is pretty dull at present. I lay in bed, play computer games, read, watch TV, rest....not much to write about. Hope all who read this are relatively well.

Recent photos and the brick wall

I've decided to post some photos. I take pictures, in part to have subject matter for my art, but I also enjoy the art of photography. Unfortunately, my inexpensive digital camera is acting up and

I'm having trouble getting any decent photos lately. So I'm posting some photos from the early winter (pre-camera funkiness).

The photos are from little outings I've done close to home. One to my favourite city park (with a creek and trails through the woods) and a couple from an overlook down the road.

I'm really enjoying being alone here at home (my roommates are away). I'm resting lots and also getting things done (I'm reviewing a piece of writing for an academic journal)...While I would probably get lonely over the long term living alone, since my one housemate's been off work, I'm almost never alone. I find both the lack of social interaction, the quiet, and the chance to create my days as I go, very stress free.

I continue to be healthier than I was in the fall, however, I still have hours and days that are awful. Some of it is self-induced. If I'm feeling OK, I'll take the dog for a short jaunt, run a quick errand, or sit up longer than I should (seriously, sitting or standing too much can cause a crash). Sometimes it hits me a few hours after activity, but more often 36 to 48hrs later.

I can't tell you how ANGRY this illness makes me sometimes. I get so frustrated. If I have an even somewhat decent day and I try to do something, I get punished. For a logically minded person, it really makes no sense?!! How can going for a very short walk, or out for lunch, cause me to spend a day or three feeling like I have influenza: weak and sick?

Honestly, how does this make biologic sense? Clearly I have a immune reaction to activity. I got a sore throat, swollen glands, headache, breathing ache, and dizziness from working on a puzzle too long. I thought I was coming down with a cold, but realized after resting that it was just the same old M.E. symptoms - symptoms that eased once I lay in bed for a few hours.

What bothers me even more is that I've been attentive, lately, to how deconditioned and weak my body is after 9 1/2 years of illness. For someone who was so physically active, in fact, had a job that involved continual physical activity, it is such a hard thing to observe in myself. And yet when I try to do little things to recondition, I collapse 1 to 2 days later with the inevitable crash.

Do you ever feel like you are banging your head against a brick wall? I sure do and yet I can't seem to find a way around, through, over, or under it?

Cysts and stuff

About 5? years ago during a physical, my specialist thought I might have some cysts on my thyroid. The ultrasound revealed two cysts and I was then sent for a scan.

The Dr. who read the scan was odd to say the least. I remember him coming in with the scan and in a very accusatory tone (almost yelling) saying "What are you doing here!?"...It took me by surprise. I responded "um, they found some cysts on my thyroid so they sent me for a scan". He was dismissive and rude. When my NP got the results it indicated some goiter but no cysts. She said we should recheck it in a year or two.

Five years later and I recently went for another ultra sound. Surprise surprise there are still two cysts on my left lobe of the thyroid just as there were 5 years ago. Most likely the same cysts (the ones the scan didn't pick up - or my guess - that the Dr. reading the scan didn't pick up). The plan now is to send me to the local endocrinologist. She said there is only one for the whole region so it will likley take at least few months.

To be honest, neither of us think it's cancer, however, better safe then sorry I guess. For one, the cysts are small and the ultrasound report suspected they were fluid filled, but the technician couldn't say for sure. However, due to the fact I've been more ill than usual this past year, my NP and the Dr. she consults with wanted me to be seen by the endocrinologist just to be sure. The endocrinologist will decide whether or not to biopsy them or send me for another scan.

I see my NP again in just over a week. Hopefully at that time I will also get my first B12 shot due to low levels. I'm quite excited and hopeful that this will give me even a temporary burst of energy.

I've spent the last week and a half resting up from my stressful travel trip south to see family. I've been doing nothing much more than resting, reading, surfing and a short gentle walk most days.

I'm feeling quite ill, especially in the afternoons (my usual pattern). However, it's in no way as awful as the September - November relapse I endured in the fall.

I also think that perhaps my immune system is on higher alert than usual. It could be it's responding to fighting off infections or it could just be an immune flare. I've been having lots of pain and itching in my axillary lymph nodes (arm pits) and my tonsils are quite swollen and sore. No, it is not a virus (unless M.E. is a virus). These are classic M.E. symptoms for me.

It's strange to be on leave, not working on the PhD (although I still have some tasks I'm working on). I wake up each day and am unsure quite what to do? I'm hoping to delve into a little art this next week while both my roommates are away. And I'm still contemplating what type of goals I want to set for myself this year (outside of taking extra care of my health).

What keeps you going?

Hi friends,

I've been pondering today what keeps me(us) going? Every day I wake up and feel ill. Some days are better, some worse. I've been stronger since the beginning of Dec. so I can enjoy little outings here and there (although often with consequences).

Today I'm living the consequences of going to an art opening last night. A local printmaker was opening a show called "wilderness". Right up my alley. It did inspire me to do more printmaking (something I already want to do more of this next few months).

Today I woke up worse than usual - fluey, exhausted, weak, and just now eating lunch, hand tremors trying to hold my spoon.

Sometimes I wonder what there is to wake for each day? (how depressing right?). I really really don't want to wake up sick for the rest of my life, but after almost 10 years of being sick I don't feel much hope that things are going to change.

Mostly I try to live in the moment and not think ahead. Just find the most joy in this hour I can. But when I feel shivers of illness with every breath it's hard. I'm so frustrated with trying. I feel like 8 times out of 10 trying just results in punishment. At the same time I don't want to live life in bed, I want to do what I can...make the most of my limited life.

As I start a new year I want to set some realistic goals, something to work towards, something to live for. But I'm struggling. I look at last years' list which I thought was unambitious and I didn't even achieve 1/2 of it. Although from the glass 1/2 full perspective I did achieve a fair amount of stuff - so perhaps I can be happy with that.

So what keeps you going? What do you wake up looking forward to each day.

For me it's:

- My dog - she's fun, good company no matter what my mood or level of illness

- The thought that I might feel a bit better today

- Sometimes trying new recipes if I have the energy, or looking through recipe books if I don't

- Ideas for prints or art I might try

- The chance that I might get to the woods or lake today (the beauty of living where I do - natural splendour, it's all so close)

More importantly, how do you endure the worst days, days where you feel like you can't survive another day of this terrible never ending flu?

A New Year

There's something about a new year that brings hope. Especially after the year I just had, hope is something I'm in need of. It was a miserable 2011 overall. I'm going to find ways to make 2012 better if I can.

As you've probably noticed, I haven't posted for a while.

After Christmas at home, which was very relaxing (I recovered from a 6 day stomach flu just in time), at the end of December into early January I made the journey to Southern Ontario to visit family.

It was a very difficult visit. While my family knows I'm sick, they are not always understanding of how sick I am. I often have to endure ignorant and insensitive comments and I'm encouraged usually to "do more" and "push through". (The exception is my mother who seems to understand that push=crash). I usually visit my brother and his family (they have a 6 and 7 year old) and my parents, who are getting on in years and struggling with their own health issues lately.

At my brother's I pushed myself considerably to play with my niece and nephew and visit. There were several times where I just collapsed in the basement guest room in private tears wishing I was home. I had trouble sleeping and got sicker the 4 days I was there. On top of it, they were priming and painting the basement rooms adjacent to mine - can you believe it? I don't think they have a clue how ill I am and that while I don't exactly have multiple chemical sensitivity, fumes can exacerbate my symptoms. After more than 9 years of being ill I no longer attempt to have them understand, but I was a little surprised to say the least.

By the time I left my brothers I thought I had an awful cold. My throat was so sore I could barely swallow and my body so achy and fluy. However, it turns out it was just the M.E. (I think) because no congestion or cough developed and some rest eased the symptoms although I endured a few days with a low grade fever (around 100).

My stay with my parents was more restful, but still stressful as there are some real issues there. Also, one of my parents smokes continually and that is difficult - I react badly to the smokey air.

On the positive, I was happy to have spent some time with my niece and nephew. That was very fun and they are such sweet kids. I love spending time with them - we always have such a good time. My brother and I got a little visit in and I did get some small pockets of quality time with my parents.

However, it was at the edge (or more honestly over the edge) of my capabilities health wise and not having adequate rest and continually trying to ignore how sick I felt in order to attend to all the other needs was tricky and doesn't make me want to visit again for a long time.

It seems that my parent's needs will only grow in the next few years and I wonder how much a chronically ill daughter can do for them? Another area of my life where I feel that I'm useless and/or inadequate to the task.

I'm very very much looking forward to these hours in bed recovering over the next week or so.

And over the next couple weeks I want to set some realistic goals for the year ahead.