Before M.E I had a challenging career I loved, socialised regularly with family & friends, rode my pushbike & rambled miles for fun, played a very hands-on role with my grandchildren, rarely sat down to watch t.v preferring to garden, clean the car or do housework. I rarely slowed down!
Almost three years ago it seemed like my whole world stopped. I developed a severe viral illness leaving me bedbound, several weeks later my GP diagnosed Post Viral Fatigue Syndrome. Being bedbound, unable to eat or toilet myself, my husband took care of me and the household while trying to work full-time. While I slept the days and nights away for months on end, he battled with his emotions, not knowing what was best to do for me and not knowing if I would ever get better. Life had turned on its head for him, our family and close friends.
Six months later I returned to work on a phased return. Within six weeks I had relapsed badly & was bedbound again, fully dependent on others to support me, history was repeating itself. Weeks later and after no progress, my GP referred me to a Chronic Fatigue Clinic. Three months later, blood tests, examinations, x-rays and Q & A’s began at the clinic before they confirmed I had Post Viral Fatigue Sydrome/Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (different names for the same illness). I was referred for Graded Exercise Therapy and put on their waiting list for Cognitive Behavioural Therapy (ME Association standpoint on G.E.T and C.B.T). During this time I had lost my job, friendships & everything I loved about my life before M.E.
After 9 months of no progress with G.E.T, the antidepressants I had been put on seemed to stop working leaving me in a self-destructive hell. I became angry with my lack of progress and the illness that had robbed me of my career, friends, independence and spontaneity, my freedom to enjoy
life with everyone and everything around me. I also felt immense guilt for the pressures my M.E symptoms put on my loved ones, especially my husband and children.
Some friendships faded, leaving me feeling worthless in their eyes as well as my own. A lot of the healthcare profession don’t understand M.E so what right did I have to expect friends to understand it and support me? There were weeks when I withdrew from everyone, angry that I was feeling sorry for myself with an illness I couldn’t control. I had every M.E. symptom (and others) listed, I’d tried to stick to ‘Pacing’, get through ‘G.E.T’, tried alternative oral treatments, stuck to regular bedtimes/get-ups but found they didn’t work for me. Not being able to achieve these things just intensified my depression, anger & guilt.
I stand by the saying…. it doesn’t matter what prescription you take to give you a better quality of life, it’s the quality of that life that counts. I have tried various antidepressant medications whilst having M.E. and thankfully the past month or so has been most……… restful. Being able to let go of the negative feelings that had taken hold has meant that I’ve begun to understand my M.E. body & mind. I rest and sleep when I need to and use medication for my fluctuating symptoms. I have shared the depth of my depression with a couple of my strongest friends, whose support is gentle and encouraging, helping me to become more peaceful and accepting of my M.E symptoms and my changed circumstances. M.E is a long, bumpy road; sharing it with them has relieved both some of the pressure from my husband and the guilt I had from putting so much on his strong shoulders. M.E may have forced my world to slow down, changed it without giving me any choice but I know I feel better when I don’t fight it, easier to role with it, enjoy and appreciate the simpler things open to me and take one day at a time.
Here are a few things that were helpful to me and mine:
The Spoon Theory by Christine Miserandino www.butyoudontlooksick.com
Chronic Fatigue Syndrome/ME Support for Family & Friends by Elizabeth Turp & M.E Association.
I use loaned (Occupational Therapy) and privately purchased equipment to help me manage day to day.