Disease Fatigue and Macular Degeneration

Yes, disease fatigue. I think that I just made up a new condition. Just did a search and it wasn’t there.

What do I mean by disease fatigue?

Chronic fatigue syndrome? Of course, and a bunch of other links to sites that talk about fatigue as a symptom.

Disease fatigue is something else. It is when you get tired of having a disease. The dictionary definition of fatigue: where it is tiresome because of length or dullness. BORING.

I have hit the point where my macular degeneration has produced disease fatigue.

My disease fatigue symptoms

It has been at least 3 years since my diagnosis. I’m not quite sure how long it has been. Should check the date but that seems to give it more importance than warranted. It seems like forever.

It is not that I have given up eating lots of tomatoes and leafy, dark green vegetables, and salmon. I still make those the main stay of my diet. It is just that I had an Italian sub the other day and didn’t flagellate myself when I got home. Ditto with a cheese Danish.

Still wear sunglasses and a hat when I go outside and take my supplement as prescribed by my retina specialist. It is simply that I don’t think the world will end if it is at 10 a.m. rather than 8 a.m.

I am accustomed to always turning on the lights before going downstairs, checking for the height of a curb and all the other things I’ve learned to accommodate living with my macular degeneration.

It is all so tedious.

A compliant patient

One thing I do not skip is the appointments for intravitreal injections. Have not and will not. That is the one thing I know will keep my vision stable.

Patient compliance – getting us to following treatment plans and physician recommendations – turns out to be a real issue for people with chronic diseases, and macular degeneration is a chronic disease.

Data on compliance

Based on a study of data from 9007 patients who received anti-VEGF injections for treatment of neovascular age-related macular degeneration (nAMD) performed at an urban, private retina practice with multiple locations, 22.2% were lost to follow-up (LTFU).

LTFU was defined as at least one interval that exceeded a duration of 12 months; patients with multiple intervals required only one interval to exceed 12 months to be considered LTFU.¹

In the study, several factors correlated with people not attending follow-up injection appointments, including age, race, socioeconomic status, and proximity to the clinic.¹

"We found a high rate of LTFU after anti-VEGF injections among patients with nAMD and identified multiple risk factors associated with LTFU among this population. Although our results may not be generalizable, data on LTFU in a clinical practice setting are needed to understand the scope of the problem so that interventions may be designed to improve outcomes."¹

Other studies showed that injection anxiety (afraid of pain and complications), issues with trusting their doctor, a lack of improvement in eyesight and a dozen other things were also involved.²

Surviving the first year

I count myself lucky that I have none of the barriers affecting my ability to keep my follow-up appointments. Here is my personal list of reasons I have been compliant with my injection appointments:

• My eyesight is stable. I know that this may not always be true but so far so good.

• The alternative is that my eyesight could get worse. That’s the great fear, isn’t it.

• It is the best option that I know.

• If I even mentioned not going my husband would drag me there. How embarrassing would that be.

A record to beat

Someone recently said that she had been having injections for 16 years. Wow. That’s a record I want to meet or beat.

What keeps you going back? What would make you stop?