Caregivers in Chronic Fatigue Syndrome
Chronic Fatigue Syndrome
Chronic Fatigue Syndrome is a severe illness often mistaken for a lame excuse to stay in bed and be lazy all day. There is nothing more emotionally painful to realize your friends and family do not understand what you are going through and brush you off with a simple "you'll be fine" "it can't be that bad" "you just need to exercise" or "just be positive". I can assure you though, suffering from Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) should never be underestimated by anyone or taken as a light matter.
What exactly is ME/CFS
You do not know the meaning of the word "fatigue" until you truly experience it flesh and blood. It may last months and even years and it may never go away. Suffering from profound fatigue for more than six months is the first symptom that will raise a red flag and make you realize that something is truly wrong with your body. In profound fatigue is usually accompanied by many other symptoms that worsen the condition. In ME/CFS you have your really bad days, and your not so bad days and I don't want to sound negative here, it's really not my intention, but rarely will you have good days (physically speaking).
The following are a few of the symptoms I have personally gone through at some point in time. Keep in mind that symptoms vary from patient to patient, from day to day and hour to hour.
- Exertion will lead to extreme muscle weakness and recovery will take 24 hours or even more.
- Sleep is not refreshing anymore, leading to hypersomnia during the day.
-Increased headaches in intensity and reoccurrence
-Impaired concentration, difficulty expressing in words or numbers, loss of balance, emotional strain
-Dizziness, feverish feelings, feeling like you are always sick with the flu or cold
-Sensitivity to food, upset stomach
Every aspect of a person life is affected by ME/CFS. At times I have felt like the quality of life I am leading cannot get any worse, and then it does. People who suffer from Chronic Fatigue do not look ill so the lack of understanding from those around you make it worse when they want to make you think "it's all in your head" . Usually, those who suffer from ME/CFS are people who have responsibilities of family and work and are either unable to tend to their needs until it is too late, or end up failing at their responsibilities due to the condition. The overwhelming feeling of fatigue makes you feel angry, sad, and even guilty. In many cases, isolation is a better answer than having to explain something people will not believe or understand.
Caregivers in ME/CFS
As a ME/CFS sufferer the one thing I truly appreciate is the understanding and emotional support that very few people have given me; and when I say few, I mean very few. Although ME/CFS can impair you physically and leave you bed bound, that is only in extreme cases. The usual case may not require a caregiver to do things for you as someone in that situation. However, caregivers can be family and friends who understand what you are going through. Those who are not judgmental. Those who can be good listeners and who understand that plans may be cancelled due to a situation originated from the condition.
On the extreme cases the caregiver will have to be there every moment. There will be tasks that patients with ME/CFS cannot complete such as getting dressed, or even standing as well as paying bills or balancing checkbooks.
Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) is a reality. I cannot stress that enough. It is a multi-symptom condition that does not let you be you. It affects your social capabilities and even your personal and sexual life. It is not something that goes away with a visit to the doctor, as there is no cure for it. A little understanding is all we ask for...