Thought for the Day:

Hope is the thing with feathers
That perches in the soul.
And sings the tune
Without the words,
and never stops at all.

- Emily Dickinson

Wednesday, March 30, 2011

Feels like spring....

Just thought I'd write a little update. I think (and hope) that perhaps this second crash of the winter is abating. Fingers crossed.

It's interesting to me how sick I've been this winter. It's so hard from year to year to have a good perspective on whether I've improved overall with this illness. While the first two years I had my lowest lows health wise, I also think I had my highest highs (or weller periods). But when I'm laying in bed feeling as weak and fluy as I have most this winter, it's really hard to remember and compare.

I've heard people talk about M.E as a progressive disease, as a fluctuating disease, and as an illness that improves over time. My guess, or instinct, is that it's all three. Perhaps some people improve or get better. I know a couple of these people. My specialist seems to think that most (not all) of her patients improve over time, but that no one is ever really "home free". That is, even the recovered need to be careful not to push too hard.

It seems like I have a fluctuating form of the illness - I've never been well since day one, but I've had some periods where I can function to some degree, and periods where I'm pretty disabled. I've never had really long period of either (long being more than a few months).

This time of year, the place where I live is pretty ugly. The snow starts to melt and everything is brown. The garbage and trash under the snow reveals itself. It's wet and muddy with brown piles of slushy snow everywhere.

Since I've spent most the winter home-bound, I haven't been taking photos. My roommates did take me on two drives (separate occasions) in Feb so here's a few photos (along with one of Teagan sitting on the front porch). I live on a huge beautiful lake (largest fresh water lake in the world). I think the boats frozen in the ice and the grain elevators capture a "snapshot" of this industrial city surrounded by natural beauty.

8 comments:

  1. Thanks for the photos....I think you are so right, upnorth....these diseases affect people differently...some improve, some get worse, some stay the same some go up and down. That is one of the most frustrating parts of it all....Wishing you continual better health.

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  2. I have wondered if it is a progressive type of illness myself as I find myself constantly trying to access my own state. I know I am definitely better than when first dx, so perhaps there still is room for improvement.

    I hope your crash is in fact passing.

    Love your dog :)

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  3. I definitely feel worse in winter - and my winters have been spent in a relatively mild climate compared to where you live. I hope that warmer weather will help you feel much better.

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  4. Brilliant dog! Yeah, the progress of the disease can be so slow it's hard to keep perspective on whether you're recovering or not. I rely on other people to tell me 'you're better than you used to be'.

    Hang in!

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  5. Renee,
    I think we're right (about the various forms of illness) and my thoughts are just coming from listening to everyone I know when they talk about it or tell me about someone they know. Glad you enjoyed the shots - just broke me camera so I'm going to miss taking shots for a while.

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  6. At home on the rock - I DO HOPE we both improve overtime. Even after almost 9 years I'm hoping for improvement.

    Nicky - for some reason late winter hits me the hardest - not sure why....just found out my D levels are low, may be a contributer, or the molds that emerge when the snow melts - do you get snow where you live?

    Jo - The dog is lovely (but don't be decieved by how cute she is, she uses that to her advantage). Can't imagine my life without a dog.

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  7. Hey Upnorth,

    I have my fingers crossed for you x

    Your area still looks lovely!! What a cute dog. I have been wanting to get one for a good while now. But I don't feel ready for it financially or with the exercise part. I don't have a garden...

    It really is hard to know how much progress one is making... That's for sure... I was with my ME/CFS doc today who I hadn't seen since starting my treatment with other docs. He was asking me how much I've improved, and really as I was explaining I felt I haven't really much. I'm sure he thought the same. I'm certainly the same level as when I started with him. However, I did go quite a bit down hill from last July until a couple of months ago. I certainly have improved since that dip, but really I'm just back to where I was when I last saw him... I am finding my better times are overall better though.

    I hope you start to get out more. I tried looking for an email for you to have a little chat sometimes if you wanted, but I see you don't have one?? If you continue to be housebound or just want someone of similar age to chat to, you can email me : )

    Enjoy your weekend xx

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  8. Thanks Treya, I'll go to your site and email you there.....I would like to chat sometime.

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