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What gets you through the times of pain/fatigue or just plain, can’t do?

Posted Jan 11 2009 3:05pm

I had sinus surgery last Monday. Six days later and I’m very tired and not “myself”.

Well, there’s a silver lining. After living with chronic illness for 30 years, I’ve been healthy enough over the past 5 years to develop a baseline for normal. Only if you’ve lived with chronic illness that waxes and wanes could you appreciate that.

When the multiple sclerosis (MS) was active (I’ve been in remission for almost 7 years) and when I lived with ulcerative colitis (an ileostomy cured it), every day was up for grabs and no day felt like another. Living with lingering disabilities from the MS, I feel fine most of the time. It’s only when I have a “hit” on my body (like a virus or the chronic sinusitis I’ve had for the past 3 years) that bad balance, incontinence and fatigue kicks in to remind me that chronic disease like MS never really goes away.
The sinus headaches … Hey, I’ve been a trusty weather predictor (of changing barometric pressure) but they also come when it’s come when it’s cold, windy or in allergy season — in other words, any time. Clients have sent me links to natural healers (mandarin oranges! ) and other resources. I’ve practiced good sinus self-care, including nasal irrigation (yuch!), humidity in the winter and windows closed in allergy season, steroid and other sprays and acupuncture. The only thing that gave relief from the headache and intense fatigue that set in was percoset or Afrin (neither a good long term solution). And nothing I did prevented them from coming on.
Which is why I chose this surgery. An article written by Judy Foreman in The Boston Globe ( a sinus sufferer chooses surgery) about her own surgery convinced me. Although a CAT scan showed that my sinuses are structurally fine, the specialist said that in his experience 90% of the people who describe my symptoms, feel better after this.

It was a relatively easy week of recovery. Thankfully, this doctor had given me an accurate idea of what to expect: exhaustion. Don’t plan to work or do anything other than sleep a lot. I canceled all client calls and scheduled this while our youngest daughter could come home (school vacation– last year in college), so my husband didn’t need to take time off from work.

After many years of long periods of ‘lost time’ being sick or incapacitated, I don’t like spending whole days in bed. As I’ve written here, work is my antidote to bad health. But I was too tired to work and by the 3rd morning, I was pretty down. I’d spent the previous day sleeping but I felt I had to push to do something I could manage. Or I’d get more depressed.

Luckily, I’d ordered some great videos from NetFlix and was able to watch two that day (Black Book, A Very Long Engagement, Beaufort). The next day, I looked at my laptop and read my email (it took two hours — I wasn’t very efficient), watched 3 videos and very importantly, was able to knit (something I love to do and gives me a sense of accomplishment).

This month’s Headache and Migraine Carnival theme is: What gets you through the hard times? Here’s what I’ve learned:

  1. Having some sense of why the pain/fatigue/inability is happening gives me some sense of “control”
  2. Being able to prepare as best as possible for when things will get worse (whether the sinusitis or migraines or surgery) so I’m able to respond with as much “ammo” as possible
  3. Being able to find something that I can do that distracts me from the pain/discomfort/fatigue and doing it in a way that I can see improvement in the situation, even slowly.

Rosalind


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