A Letter…

Posted: April 9, 2012 in Uncategorized

To Whom It May Concern,

Your actions today could have caused me to be upset. But they didn’t. They could have caused me to become angry. But they didn’t.

I feel nothing but pity.

Pity for your ignorance. To the fact that even when offered the opportunity to find out more about something you so obviously know nothing about, you turned away.

But perhaps it’s not your fault. Months ago I tried a simplistic explanation as to my “can’s” and “cannot’s” where perhaps further explanation would have been a better approach.

If you continue reading then perhaps I can clarify things…

Contrary to what I said I am not “allergic to light”. I have a problem whereby when my skin cells are exposed to UV light they die (just like in “normal” people) but where in you they are effectively cleared away perhaps leaving you a little sunburnt, in me they are not. In me an immune response is generated and my body begins to attack itself.

The same could be said for even the simple task of walking. The wear and tear on the joints will cause the breakdown and decay of cells which in you will be effectively removed. In me, as above, it will generate an immune response.

These immune responses that attack my body are not “localised” to the area initially damaged. They effect my kidneys, liver, heart, lungs, brain… anything. Sometimes I recover and sometimes permanent damage is done. The more I have these reactions the greater the risk of permanent damage.

If I catch an infection, the same rules apply. My immune system attacks ME not the infection.

This is called Lupus and it is the primary complication I have.

I say primary because there are also secondary complications too.

Fibromyalgia has some similar symptoms to Lupus. Pain, fatigue, sleep disturbance, joint stiffness…
The above also applies to Vitamin D deficiency. But where vitamin D deficiency is treatable with a single tablet twice a day, there is no treatment for fibromyalgia. If it hurts (and it will hurt) I put up with it and rarely show any outward problems.

But it doesn’t stop there…

Raynauds will mean that slight changes in temperature cause the blood vessels in my hands and feet go in to spasm and the blood slows and sometimes stopping altogether. As you start to warm up and the blood rushes to get round you get a burning sensation. If it’s a really bad attack there’s a risk that the circulation may not come back soon enough…

Osteopenia means that if I fall I’m a lot more likely to break a bone than you are.

I’ve tried to keep it fairly simple and yet accurate but perhaps these considerations may help your understanding.

Consider that your day revolves around what tablets come next out of the 25 you are taking.
Consider that everytime you walk out the door you must put on suncream no matter how late you may be.
Consider that every flight of stairs seems like a small mountain and when you get to the top you’re so out of breath and in pain you’re at risk of passing out and falling straight back down.
Consider that everything (and that includes the smallest tasks) need careful planning and, in some cases, need completely writing off at the last minute.

I would write more but unfortunately I’m now too tired to focus on what comes next but I do want to point out that this isn’t a dig and it’s certainly not a sympathy plea.

I do not anticipate a response,

  1. Gloria McCready says:

    So Bren, I am curious about your response that day I came to visit you at work and you screamed at me that just once you would like to have a visit with your sister with no problems. Can’t remember the exact words but this letter certainly applies to people with PH and Crest Syndrome and all the things that come with them.

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