Grief

Sometimes people grieve when no death is involved - except maybe the death of a dream.

It's not uncommon for parents to grieve when they learn their child has special needs and won't be able to have the life they'd imagined.

Or if someone learns they have a disability or chronic illness themselves grief is a normal reaction.

As when someone dies, it's usual to go through the five stages of grief explained by Elizabeth Kubler-Ross (sorry I don't know how to add umlauts to her name.) Those stages are denial, anger, bargaining, depression, and acceptance and people may cycle through them for a long time or return to them long after they've come to terms with the situation. The same thing is true with the sort of grief I'm talking about, and any of the stages can re-occur at any time.

If they do, it's perfectly normal.

My CFS Journey Part 6

Years after what I mentioned in my last post a doctor wanted to give me Hormone Replacement Therapy because I was at risk for osteoporosis but all those meds had inactive ingredients I was allergic to. Finally he discovered an injectable form of estrogen and one brand of progesterone pills I could use. I got the injection, but when I tried to fill the prescription for the pills the pharmacist said they had been discontinued that same week.

I had horrendous side effects for nearly eight months. Besides having to go through menopause all over again with much more severe symptoms I was constantly getting cramps in my hands, feet, and legs that kept waking me up at night. It was a horrible experience.

But at the end of the eight months my CFS symptoms had disappeared!

That was nine years ago and since then my energy level has been perfectly normal, although I still have all the allergies and have gotten a few more. I haven't been tested again for mono so I don't know if that virus is completely gone from my system or not.

Last year my allergist had me try eating the foods high in sulphur and within two weeks the CFS kind of fatigue had returned mildly, so apparently I'm not completely over the disease. Obviously I'll never eat those foods again. But otherwise, except for the allergies, I've been fine.

No doctor can figure out exactly why and I'd like this to make sense, but I'm extremely grateful for the best health I've had in decades.

It's not likely that doctors will give other women estrogen shots without progesterone and obviously men can't be given those hormones so, unfortunately, what helped me so dramatically probably won't help many other people. But perhaps hearing about it could help researchers figure out what causes Chronic Fatigue Syndrome and what can be done to help others who have it. I'm sharing my story in hopes it will get to someone who can use it to make a difference.

New Research

Many people with chronic illness are delighted to see news stories about this newly-released scientific study: http://www.wpinstitute.org/xmrv/index.html. It's about a retrovirus called XMRV that has been discovered in most of the subjects tested who have Chronic Fatigue Syndrome, Fibromyalgia, and similar conditions. Of course it will take time to see if anti-viral medications can cure those diseases, but at last there is hope.

Since the same virus has also been found in people with certain kinds of cancer, it's possible that XMRV is not the cause of the diseases but simply takes advantage of damaged immune systems. But even that is helpful for people with CFS/ME and FM since it proves those illnesses are real and not just psychosomatic. It's hard enough to live with debilitating chronic illness without being told "It's all in your head" and having to struggle to find a medical practitioner who believes you're really sick.

Half Full or Half Empty

Once my daughter Annie's fourth grade teacher held up a glass of water and asked the class, "Is this half full or half empty?" My daughter, thinking it was a trick science question, raised her hand and replied, "Neither. It's all the way full; half with water and half with air."

I was suffering with chronic illness and pain, and my daughter's words said made me realize my life was like that glass. It was filled to the brim with blessings others couldn't see, like a greatly increased appreciation of things other people take for granted, and the immediate bonds of friendship with others who have chronic conditions because we understand each other at such a deep level.