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Advice: When Do You Make Allowances For Yourself?

Tue, March 11, 2014 12:44 PM

Hello,

I'm a single woman in my 30's living abroad where I've been suffering from UC for the past four years. I'm currently on an experimental treatment which is controlling 85% of my symptoms but causes unpleasant side effects (flu-like symptoms, panic attacks, hot flashes, dizziness, burning mouth and feet, forgetfulness and confusion, headaches, muscle spasms, exhaustion). I'm also taking steroids. My kidney function has to be carefully monitored because one of the drugs I'm on negatively impacts this organ.

My only sibling is getting married this summer in the US, and I live in Europe. In order to attend the wedding, I would need to travel from Europe to the US and back again within the space of about one week. I would need to do this on my own with no travel companion. Prior to being diagnosed with IBD, I would have done this without hesitation. I had no compunction about traveling all over the world.

Well, what I'm wondering is: How do you balance chronic disease - (1) uncertainty about flares and (2) the side effects of medications - with living an "ordinary life"? In a nutshell, I'm not sure whether I'm right in thinking: "It's just too much to handle on my own!". When perhaps what I should be saying is: "I refuse to let this disease control my life!"

Am I "sick enough" to justify the fact that I feel I can't handle the journey on my own? I want to attend, but I'm uncomfortable and unsure if I can cope with the side effects of all the drugs in combination with long distance travel (sitting for 13 hours, no easy access and privacy to toilets, time change, change to timing of taking medications, making all the connections).

Any thoughts and advice are much appreciated.

tulip2011
Joined Jun 17, 2011

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