As I sit down to write my first advice for self-care, I realized that this advice must necessarily come with a caveat.
Patient to patient advice tends to be frowned upon, though when you have a disease most doctors are wholly ignorant of with a small percentage even still believing it’s a mental disorder or Munchausen at its best, you learn how to take care of yourself as best as you can. You also learn to do your own research, engage with other patients to compare symptoms, drugs, treatments, supplements and simply commiserate. Sometimes, holding the hand of another patient, working to balance your illness together, you learn things you never would on your own.
You help yourself because no one else knows how to help you. You help yourself because you have more co morbidities than any one doctor can treat, will listen to in a single appointment or simply because you can’t bear to add one more specialist to the roster. Besides, your Medicaid, medicare or even employer sponsored insurance won’t pay for a podiatrist or dermatologist for example, without so much red tape that they might as well admit they simply won’t cover the service.
In the process of accumulating all this knowledge and know how, I began to itch to share this wealth of information with people who can benefit from it. In the 7 years I’ve been housebound, I’ve researched every autoimmune and neurological disorder—no matter how terrifying or unlikely—trying to understand my disease and confirm that ME/CFS is truly what ails me.
I also wanted to know what lies ahead for me. Many ME/CFS sufferers are diagnosed with new disorders as their illness progresses. For example, Multiple Sclerosis and cancer are just two diagnoses among several that are common for people with ME/CFS. Organ failure is also common, as is the occasional ALS diagnosis. Some people argue that in these cases ME/CFS was initially a misdiagnosis, but these people don’t know the disease as intimately as they should.
As much as ME/CFS is autoimmune in nature, it’s equally a central nervous system disorder. ME/CFS causes lesions on the brain, which almost always triggers an automatic diagnosis of MS when coupled with the right symptoms, symptoms which are already present in most people with ME/CFS; hence ME/CFS’s classification as a neuro-immune disorder among those who study and understand the disease best.
What I intend to share here is practical advice and effective treatments that I’ve found along the way. No, I’m not a doctor or medical practitioner and you should not take it as medical advice. Instead, take it as one patient talking to another, a patient who hopes that all her valuable experiences and knowledge can help someone else.
Much of the advice I make is applicable to many diseases, which is why I named this site Disability Depot instead of ME/CFS Depot. I neither have a miracle cure to offer anyone, nor do I believe they exist, just practical advice on how to care for and comfort many of the co-morbidities that go along with chronic illness.
Please, treat this advice as you should from anyone, including your doctors; with a heaping helping of caution: Because if there is any advice I would give to any and all sufferers of chronic illness, it is to question EVERYTHING about your illness and any treatments offered, be your own advocate, DO YOUR RESEARCH before engaging in any new treatment, trust in your own body, and use common sense in choosing what treatments are right for you. It’s your body and you and your doctors should be making these decisions together.
So take my advice with a grain of salt. Talk to your doctors or medical practitioners about it, consider all the reasons it may or may not be right for you. You’re your own person, you have control over the decisions made about it. If you haven’t taken control of making the decisions about your disease in coordination with your doctors, there’s no time like the present.