Illness and self-confidence

Yesterday I found out I won an award. It's a two year PhD research fellowship from the Canadian government organization SSHRC (which stands for the Social Science and Humanities Research Council of Canada).

Of course I'm very happy. Honoured. Exited. Any way you look at it, it's a good thing.

In some ways it solves some of my issues. It's enough money to both pay tuition and live on. (Live on just, but most of us who have been scrounging and getting by on social assistance know how to live the frugal life).

I'm not sure if I will be removed from social assistance as a result, I have yet to make that call-but either way, I'm going to take the fellowship.

If I loose my social assistance and am still not well enough to make a living in 3 years, I'll just have to apply again. In the mean time, it will feel good not to be living off the government (although this is a government fellowship? hmmm).

And if I don't loose the social assistance, I'll be living above the poverty line!!!!!!

It also means I won't have to do a graduate assistantship this year. Although I've rarely had to work even near the 10 hrs a week required, the few hours I have worked will go towards PhD progress instead.

After getting the letter yesterday, phoning and emailing some people with the news, I realized I felt sick and needed to rest. Funny, getting a SSHRC didn't change the fact that I still have M.E and am sick.

In some ways I feel very undeserving of this award. Spending at least 70% of my day lying down, rarely leaving the house, feeling like I don't contribute much to society...it often makes me feel worthless.

Having spent a long winter mostly in bed, and for the most part house-bound, I find my self-confidence and self-worth is even lower than usual. Which makes it even harder to get my head around the fact that with all the amazing people I've met who are pursuing graduate studies, I'm given a fellowship???!!!! Like I said, it's hard to get my head around.

My plan: For the time being, continue with the PhD (instead of dropping out). However, I will continue to work only enough that I don't induce crashes. I will continue to work mostly at home and in bed.

I love that quotation, "the journey of a 1 000 miles begins with a single step". I will continue to take small, sometimes infinitesimal steps within the boundaries of the illness....and for now that's my plan.


HEALTH UPDATE: I'm tolerating the anti viral VALTREX well. Some minor headaches and digestive issues, but nothing unbearable. I'm up to 1 000 mg a day. I'll stay at this dose for the time being. However, I haven't seen much change in my viral symptoms. Sore throats, painful lymph glands, and low grade fevers continue, along with that feeling of illness and the chest-ache.

What I woke up to....

I woke up this morning to a snowy scene. A couple centimeters of fresh snow. It was beautiful and not unexpected for April. It's also supposed to reach 15 C and sunny this week. This is typical for spring in the near north.

I've been doing relatively well health-wise since overcoming my third cold virus of the winter. I've also been recovering from my trip south.

Overall, my energy has been OK with milder flu symptoms. I haven't been pushing it at all.

I wake up each morning and spend 1 - 2 hours working on my research proposal (in bed). It was due a week ago (thank-you doctor's note and subsequent extension).

Then I piddle around...rest in bed, eat a little, rest, watch TV, rest, play a game or two online. Not a very exciting existence, but do-able.

No side effects yet from the anti-viral - although I'm on an extremely low dose to start.

I was feeling well enough (maybe 50%) last night that I went to a one hour choral concert with my roommate. I made it through most of it, we left before the final number - I was feeling too wiped to make it all the way through.

Today I woke up feeling like I had.....well....M.E./CFS.

Similar to a very severe case of the flu along with weakness and the shakes (from weakness). Symptoms (throat, headache, painful lymph nodes, dizzy spells) are mild compared to the flu, but malaise (sick feeling) and weakness much worse. And it hurts to breathe (like I breathed in a lot of water) as per usual with a crash.

And immediately I plummet into depression. How do I endure another day of this? Really!!?? Seriously!

I talked to my specialist about being so down this winter and she thinks it's a case of what she calls reactive depression. She thinks if we can get me feeling better, the depression will also abate. It makes sense because on the days I'm not as sick, I am able to feel hopeful....its' just these awful sick days - days when I'm especially fluey.

Quick update - specialist appointment

I just returned from seeing my specialist.
I have to travel to see her. While I was south, I stayed with my folks for a few days before my appointment (to rest) and afterwards (to recover) before flying home. Plus it gave me a chance to check-in and visit with my parents.

I saw my specialist last in December.
I had some bloodwork done at the end of Dec. as well. This was before my crash/relapse.

Mostly, my bloodwork was normal (which in some ways is quite frustrating considering how very sick I've been all winter).

However, a reactivated mono (epstein barr virus) infection was present as well as low globulin and a high globulin-albumin ratio. Not quite sure what that indicates but I was told to increase my protein intake significantly.

Also, my specialist gave me Valtrex (an antiviral) to take for a 3-6 month period which may help some with all my viral symptoms. I have tolerated low doses of valtrex in the past, so I hope it does help. Plus, I'm at a point where I just need to try SOMETHING! ANYTHING!

I'll blog again this week when I'm feeling a bit stronger. Lucky me, I also came down with a cold virus the first day of my trip which has me feeling extra exhausted.

Hope everyone is well.

Invisible Awareness - April

Dominique, a woman many of us know through the blogging world has started a great site with the goal of getting stories of M.E. sufferers out there - in order to both give sufferers a voice, and create awareness.

Each month the site features someone's story. This month my story is featured. http://invisibleawareness.org/2011/04/12/march-2011-mecfs-story-gail/

If you haven't found this site yet, check out the other two well written and moving stories from February and March.

Despite being very ill at present, Dominique is still finding ways to advocate for those with M.E., an invisible yet disabling chronic illness. It's inspiring. Thanks Dominique!

You can find her blog, 4 walls and a view here: http://www.4wallsandaview.com/

NIH meeting on ME/CFS

I watched much of this two day meeting sponsored by the NIH (National Institute of Health in the United States) looking at M.E./chronic fatigue syndrome: https://www.infinityconferences.com/InfiniBase/Templates/157557/Agenda.htm

I won't go into great detail because you can watch it all online - the talks will be posted with video files. Here's a few of my take away thoughts:

• I was impressed by much of the science as well as many of the scientists (who are also obviously patient advocates)


• It made me sad to see how varied and heterogeneous the understanding is, and how far it seems we are from adequate treatment of any kind.


• My specialist uses the analogy of the blind "men" and the elephant. All these researchers are describing the part of the elephant they "feel", but none of them understand the whole. Luckily it seems many are willing to colaborate and/or use systems approaches.


• The patients who spoke - some of them brought me to tears.


• I thought Nancy Klimas was amazing - she shared important work, has a handle on treating patients, and also had an agreeable and cooperative attitude. I also really enjoyed Alter's sense of humour. He did well dealing with the contenious issue of XMRV research.


• In all politeness I won't mention the scientists I was unimpressed with, but there were obviously those there that won't be collaborating and considering other's research in order to understand the big picture and move things foward.

One question that was asked (of patients) was that if one aspect of their illness could be treated, what they would want targeted? I'm going to make this the next poll here on my blog.....but feel free to comment and elaborate if you want. In all honestly, I would expect we all answer that we want to be "better", not have only one aspect of the illness treated.

Now, on a personal note, listening to these talks completely exhausted me and I've been feeling quite ill anyways. However, I couldn't seem to keep myself away from engaging, despite the fact that at times I was too dizzy to look at the screen.....so stupid. And I'm supposed to be writing a paper.

The Good Things....

Having been so sick all winter, it's been hard to see past the never ending flu, weakness, dizziness, chest ache, low grade fevers, and fatigue.

During my first couple years of illness I underwent a lot of losses: I lost my job/career, home, community (was forced to move, thus also lost daily contact with friends). I lost my physical health which meant losing almost all my hobbies.

While I was going through these losses, I got very depressed. One way I dealt with it was to keep a journal as an outlet. Many days I started my journal with a list of things to be grateful for, or things I hadn't lost.

Having endured another long winter of illness, I have been feeling the heaviness of depression for all those things I can't do (work, hobbies, exercise, socialize etc.), and all the continued losses (career, many of my friends, having children, etc). I thought it would be both nice (and healthy) to focus on a few of the things I'm grateful for:

1. I have a wonderful, funny, entertaining and loyal friend in my life - Teagan, my dog.

2. My cousin and her husband (both good friends) live with me so I'm not completely isolated and I reap many benefits including company, help with groceries, errands, and physical tasks (drives to appointments, taking out the garbage, vacuuming etc.).

3. I didn't get sick until I had just turned 32 so I had 32 healthy, physically active years. I traveled many amazing wilderness areas, and worked with interesting and sometimes inspiring teens and youth. My co-instructors were usually adventurous and compassionate people. Some people never get to work their "dream" job and pursue their passions the way I did before I became ill.

4. I have a home - which is huge since I was virtually "homeless" for the first 3 years of this illness - surfing from couch, to spare bedroom, even living in a tent trailer for a while.

5. I have an amazing specialist. I realize this is not the case for many with M.E.

6. While I've lost friends through distance and time, I still have some good, supportive friends.

7. I'm still able to read (which is a huge pass-time for me).

8. At this point, I am still well enough to pursue graduate work part-time, although that is being re-assessed at the moment.

9. I live in a great country.

10. I live in a beautiful area, so those few times a year I'm up for it, I get to enjoy amazing views, swim in clear, clean water, observe some incredible wildlife, etc.