This was written earlier this year…..
Despite living with this horrible disease for years, ME still manages to find ways to thrust some harsh realizations on us.
Today’s realization has me indulging in a pity party. Complete with tears.
We had an appointment about a possible treatment* for one of my sons. The treatment comes with no guarantees but has a decent possibility of easing some of his worst symptoms.
Since that appointment my son has been too wiped out to discuss or consider the treatment. Because of ME, he has been too wiped out to think.
Today (three days later though even this was pushing it for him to think or discuss things) my son was finally able to tell me that because this treatment is 5 days a week (with about 2 hours travel each day – I would do the driving) for 4-6 weeks – he doesn’t think he can physically handle it.
I suggested we ask about trying it 3 days a week over a longer time period.
He can’t manage that either.
My son knows his physical and cognitive limits better than anyone else, and certainly I don’t want him to push him beyond them.
It feels cruel that this illness is so incapacitating that he can’t try a potential treatment.
A treatment that might help improve his cognitive function and lessen his pain. And yet ME has limited him so much that he can’t handle the intensive treatment schedule.
If my son were a patient with cancer and were too debilitated to try a treatment, people would more readily understand how limited he is.
Even though ME “… has been found to be more disabling than MS, heart disease, virtually all types of cancer, patients undergoing chemotherapy or hemodyalisis. It is comparable to end-stage AIDS, i.e. to how ill and disabled an AIDS patient is 2 weeks before death.” (Hooper and Marshall), most people don’t know it or believe it.
The level of debilitation with ME isn’t improved with something like a transfusion…. instead it just goes on and on with no improvement in function, no improvement in endurance and stamina.
Right now I need to process that my son is too sick for a possible treatment. I need to process that ME obliged him to say no to a potential treatment. I need to process this unwelcome reminder that most people don’t have a clue how disabling, debilitating and extraordinarily difficult live with ME is.
Hence my pity party with tears. (I manage to limit these to about 3 times a year.)
So I will shed tears today.
And then I will focus again on helping to make a difference for people affected by ME.
* To our knowledge this treatment has not been tried in people with ME and for that reason we do not feel comfortable being more specific about it. But rest assured. It is not GET and it is not CBT nor is it related to either one.