When I was severely affected by M.E. I didn’t have relapses. I was just sick every second of every day. Some days were worse than others, but on the whole I was so ill I felt like I was dying and didn’t know how I would make it through the next hour let alone an entire day.
After about 6 years of being almost totally bedridden I began to start making improvements. They were so small at first I didn’t really notice them, but eventually I realized I was clawing my way up the greasy pole and by year 10 I no longer felt I was severely affected by M.E. and changed my status to moderate. Now 20 years on, although still moderately affected, I’m usually very stable and only have a symptom flare if I’ve seriously over-done it, or get a cold or other viral infection.
My improvement hasn’t been a one way street however. I’ve had my share of relapses, where one minute I’d be well enough to get dressed, make meals, drive, use the computer, speak on the phone and watch as much TV as I liked………….. and the next minute I’d be curled in a ball, deathly white, shaking, freezing, sweating, puking, with the world spinning, the slightest sound piercing my head like a knife, unable to rest let alone sleep, speech slurred, brain poisoned, and with my whole body wracked with fiery pain.
Relapses are absolutely terrifying because you don’t know if you’re ever going to come out of them. I sometimes used to think I’d prefer to just be sick all the time like I used to be, rather than have a glimpse of a better life only for it to be snatched away again. The physical symptoms were bad enough but the accompanying emotions were worse: paralysing fear, heart-palpitating panic, tidal waves of self-pitying tears, deep dark never-ending nights and overwhelming depression. Suicide during these times took over my every waking thought as I simply didn’t think I had the strength to get through another unrelentingly hellish day.
Usually I could pinpoint my relapses to a specific event. For example, I had a 3 minute chiropracty appointment for my back pain and knew within 10 minutes of leaving the office I was having a major relapse. That time I ended up being blue-lighted by ambulance in the middle of the night as it was thought I was going into heart failure and it took 9 months for me to return to my pre-chiropracty-appointment self. Another relapse occurred after having cranial osteopathy, which put me in bed for 3 months in a semi-coma. And then there was my attempt at simple yoga breathing sitting quietly cross-legged on my bedroom floor, which put me in the neurological rehabilitation unit of my local hospital for 3 weeks with seizures, followed by a year long relapse during which time I could barely speak or stand. Much as my current homeostasis sucks, all hell breaks loose if I try to change it which is why I totally ignore all the well meaning advice given to me to try this supplement or that drug or some other therapy.
The most terrifying relapses were, however, those for which no trigger could be identified. I’d feel myself sliding downhill, totally unable to stop the decline, until one morning I’d wake feeling like someone had overdosed me on chemotherapy then beat me with a truncheon while I slept. Every time this happened I felt like I simply couldn’t go through it again. And every time I survived. I AM A WARRIOR who has triumphed in battles no-one should ever be asked to fight.
As I slowly, slowly became stronger (and stopped doing daft things like trying acupuncture or Echinacea) my relapses became less potent. I still had them, but they were much less severe and of much shorter duration. My last serious relapse was 4 years ago and I bounced back in about 8 weeks, rather than the 8 months it used to take. I still live every day with the fear that I’ll relapse again and this time I might get stuck there permanently, but that only gives me an added incentive to seize the day, every day, and do as much as I can to live my life to the full while I have the chance – which is something we should all aim to do, as none of us know what’s around the next corner.
My friend and follow blogger Elizabeth Milo is currently having a really serious and scary relapse. I’ve been there……….many times………and my heart is just full of empathy, understanding and love for her. I’m sure she’s terrified she’ll never get better, but I have absolute faith it is just a set-back and she will absolutely pull out of it. This song is for you EM: