This Is M.E
Most of you (my friends and family) know that I have Chronic Fatigue Syndrome (CFS). It is also known as Myalgic Encephalomyelitis (M.E) and Chronic Fatigue Immune Dysfunction Syndrome (CFIDS). A new name that has been put forward in recent times is Systemic Exersion Intolerance Disease (SEID) (love it or hate it as you may!). This illness doesn’t even have one name that everyone can agree on, which is one of the many frustrating aspects of living with this multi-faceted illness.
As part of International ME/CFS/Fibromyalgia Awareness Week, I have made a list of 5 things you may not know about me (in general) and 5 things you may not know about my life with CFS / ME.
Have a read and see if there’s anything you didn’t know. Awareness Day is about creating awareness, so through these questions and answers, this is my way of creating a little more awareness about CFS / ME in my own personal network of friends and family. If you wish to pass this on to anyone, feel free to do so. It will create more awareness of this debilitating illness if you do. Thank you!
What is your name & how long have you had ME / CFS?
Where do you live? (Country, State, City – however detailed you want)
Age (if you’re willing to share)
Tell us 5 things about you that the people in your life probably don’t know (non-illness-related):
1. I love gardening. Every Spring I sow fruit and vegetable seeds in order to grow my own throughout the Summer months. There’s something rewarding about growing your own food, and generally it seems to taste so much better than the supermarket bought items!
Tell us 5 things about you that the people in your life probably don’t know about your life with CFS / ME:
What one thing do you think most people wouldn’t know about living with ME / CFS that you’d like them to know?
It’s a constant challenge. It often feels like you’re struggling to keep your head above water; every time you see the slightest hint of improvement it can be cruelly snatched away. There are many times you feel like giving up altogether. You question the point of living a life when so much of it seems to be wasted on doing nothing, resting, in the hope that by doing that you will recover to the point of being able to live life again. You spend the majority of your time just existing, unable to join in the things going on in other people’s lives. But you do your best to live your life to the absolute max of your ability. That might not mean the big things other people would think it does; it could just be getting out of the house for 10 minutes, or going to one shop in a wheelchair. While doing that you hope that one day your absolute max will increase to mean the big things it does to everyone else.
What is the most frustrating aspect for you of living with ME / CFS?
There are so many frustrating aspects it’s difficult to pick one. I think the most frustrating aspect of living with this illness is my dependence on my parents – financially and otherwise – at 22 I should be washing and dressing myself, earning a living, cooking for myself. Basically being a lot more independent than I am, yet this illness has left me completely dependent on them for seemingly everything. I am immensely grateful for the fact they do so much for me, stuff no parent should have to do for their 22 year old daughter.
Anything else you’d like to say before finishing?
I can’t remember what it is like to be healthy. To be pain free. To be fatigue free. To not have to carefully balance activities and rest in order to maintain the current level of health. I cling on to the hope that one day I will rediscover what it is like to be healthy.