everything has changed…

This post is part of a Patients For A Moment  blog carnival that Lorna is hosting. This month’s PFAM blog carnival topic is “change.” 

When I first got diagnosed with lupus at 16, after 6 months or so of testing, I got really lucky and the first round of prednisone pushed it into remission. The doctors were surprised, but obviously really pleased. As a result, though, I didn’t really have to learn to live with the condition until it flared back into existence 5 years later. For the purposes of this post, I’m going to focus on the changes that have occurred in my life from that point forward.

To say “everything has changed” might sound a little melodramatic, but the truth is that very few things are the same as they were before. Every hour of waking time is different from what waking time was like before. Sleeping hours, when I manage to sleep in the first place, are also a whole different situation. My relationships – with friends, family, and potential partners – have all changed too. People think that dealing with a chronic illness means just dealing with the physical illness and maybe its mental effects like the frustrating brain fog that makes me forgetful. Oh and maybe the inconvenience of swallowing lots of medications.. but there’s a lot more to it than that.

First there are all the things that I can’t do because they’re too physically challenging. Contact sports are out, and I can’t run because it makes my knees swell so anything that requires running is out too. I get tired too easily to be on my feet all day, but sitting in one place for hours is rough too which makes long distance travel difficult. This means travel is hard in general (for many reasons, of which this is only one). This impacts hobbies and outings with friends as well as travel and family events.

Changes in weather prove to be a huge problem too.  I think sudden changes in weather are a problem for everyone to an extent.. outdoor plans get cancelled, you suddenly need an umbrella, or a hat, or a sundress, etc. However, changes in weather for me can be debilitating. Rainy days make my joints achey. Extreme heat or cold also leave my body aching and often drain my energy. Plus, sudden changes in temperature have similar effects.

Then there are the changes to life plans. When I went into that flare, I was in medical school. I was forced to leave that program, and won’t be able to go back to medical school. So now I’ve had to reassess the rest of my life from a career standpoint. There are some careers, like medicine, that I can’t manage not only because the rigors of the education required to get there are more than I can handle, but also because the hours and time on my feet involved in the career itself wouldn’t be possible.

Even eating isn’t easy anymore. With all the meds that I take, I have to arrange appropriate food at appropriate times to coincide with not only the timings of my medications doses but any requirements for what they need to be taken with. I also have a lot of trouble with nausea, which makes eating hard. Sometimes my pain levels contribute to the nausea too. Then there’s the fact that gastroparesis makes it difficult to eat much in the first place, and end up throwing things up fairly often. Plus there are eating restrictions – like I can’t have soy milk.

It’s changed my relationships with my family members too. Dealing with a child’s illness is an awful lot for a parent to deal with, and my parents sometimes deal with denial or denouncement. My sister tries to help when she can, but sometimes too many offers of help can be frustrating too. I feel like a burden on my family, which is something I never had to deal with before.

Making plans with friends is hard, because there are a lot of things that I just  can’t do anymore. Oftentimes, I don’t know for sure that I can make it until the last minute which means that I flake out without much warning. While most of my closest friends are understanding overall, it still strains the relationships. I feel unreliable, and it’s hard to make plans very far ahead.

Having a chronic illness also has a huge impact on my love life, or lack thereof. Dealing with all the ins and outs of a chronic illness is a lot to ask of a person who doesn’t know you all that well yet. It makes dating hard (see plans with friends above). It also makes it hard when you start talking about what a life together would be like. I’ve found that it’s a deal breaker for a lot of people. And while I know I should be holding out hope for that one person who won’t care, it’s a frustrating experience all around in the meanitme.

All in all, pretty much everything has changed.

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2 Comments

Filed under blog carnivals/grand rounds, community education, introspection, rant

2 responses to “everything has changed…

  1. marykatbpcsc45

    This message is so important to raise awareness. Dealing with a CI is like living in an alien world. So very few people can relate. I know how you feel. My help comes from above. Thanks fo sharing. I so glad I met you as part of the PFAM carnival.

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