Too tired to move

Fatigue is not just a fancy word for tiredness.

Fatigue is a symptom.

For the first year or so after dx, I was not good at dealing with fatigue. I wrote "When exhaustion hits, the fatigue is absolute and sometimes crying is the only relief / thing I can do." I rarely cry about it now but I do sit unable to make myself walk the few yards from my settee to the kitchen. I once felt the fatigue wash over me whilst stood at a supermarket check-out. I had to wait for it to pass. Thankfully, it was a minor fatigue sea otherwise I wouldn't have got my shopping home.

As I write this, I'm sat wired up to a portable ECG monitor. I need to take it off but I'm too tired to get up and do it. 

I am glad to be wearing the monitor because it means I have restarted the trial. I'm back on the (to me) miracle drug which has replaced my horrible self-injections of Rebif.

I hate failing but I have never been so happy to be deemed a failure as when I was told one of the reasons I could join the new DMD trial is because I am a clinical failure with Rebif. Not because I had a relapse but I did have continuing injection problems such as site reactions, pain and difficulty injecting.

This drug is a one-a-day capsule. Easy. I was unfortunate to start the trial but then immediately be hit by a horrendous viral infection which became a bronchial infection. Chest infections/problems are a known side effect of this new drug. I developed the problems far too quickly for them to be associated with the drug but severely enough that I had to suspend taking it.

Now I’m back on the drug and I’ll be able to continue as long as this ECG doesn’t show any problems. I’m lucky that the hospital didn’t make me stay in for the six hour monitoring. Protocol says that I have effectively had to start the trial again from the beginning. This would normally mean a long day at the hospital being tested, monitored and examined followed up by being sent home connected to a 24hr portable ECG monitor.

Fortunately, my blood pressure on previous monitoring has been excellent. All I have to do now is take the blasted monitor off but I’m too tired to move.