ME/CFS - When hope hurts and only "now" matters

Sliding goals
Many ME/CFS patients spend years in total darkness unable to leave their rooms. Not quite that extreme for my son.  But housebound and  cut off from all social contact for six years since the age of 18 is not place that any of us can really imagine.

Yesterday morning I spent several hours dealing with a crisis of hopelessness. We are at the end of a long, withering process. For two years after 11-Jun-2001 there was "I'm not sick", "Well maybe just a bit. I'll be OK". Basically - just push through it. Then the acceptance that some things needed to be different. The path to law school was obviously no longer going to be by staying on accelerated schooling and the normal channels. Then there was acceptance of the need to look at much more moderate careers. 

This sort of compromise is normal for what - 100% of the human race? What happens with chronic, incurable illness is the goals just keep sliding to a lower level. Soon the goals move from compromise but still normal life, to "making the best of" life. A wish for some independence, friends etc. Then the line moves further back - a wish to be able to enjoy some things in life even if it is not a full, normal life. Then it becomes a wish to get through each day and be able to do at least one or two things you like. Drawing was one of those. Gone 4 years ago. No longer possible with the ME/CFS. A year ago he had just been prescribed Lyrica. The first few doses were miraculous. Out came the drawing equipment and a few masterpieces. Sadly it waned in a few weeks.

Now - Just wanting relief from Pain
Life has become for him never ending pain. And a hope that he will get maybe a couple of hours each day where he might just be able to sit and enjoy watching something. Or read something interesting. Or play a computer game. Not exactly high expectations. Yesterday frustration took over. He took very high doses of his prescription medicines. "What is the point of normal doses. They help me cope but leave me unable to do anything. At least this way I get a couple of hours to do something I enjoy". Sit, relax, enjoy, read. It has been about 7 weeks since he was able to do that.

I discussed what happens after this. eg. if he uses up his medications before time. It no longer matters. His willpower is burnt out and used up. The wish to somehow get to university is years old. The thousand more modest goals are years old. The wish now is, to enjoy just a couple of hours hours without being in pain. Nothing else matters.

When your brother suggests you should think of ending your own life...

Yesterday there was an exchange between the sick son (24 yo) and his brother. The younger brother suggested to him that he should think of ending his life. 

Make no mistake, this was not done in absence of care. For the younger brother there has been trauma in seeing his older brother, since he was a kid, get sicker and sicker. In more and more pain. To see his brothers physical suffering move from week by week, to day by day, to hour by hour.

Time has moved on. The older is now 24 years old and housebound. It's been nearly 12 years since the 11th of Jun, 2001 when he caught his CFS/ME. In that time hope has faded. 

The point the younger brother made was: we've lost the life savings looking after him. The family has no life - (that's mainly me - 18 hour days working and caring for him). And it's getting time for his older brother to consider ending it for the sake of us.

Too Much Pain - for both the Sufferrer and the Carer

Well I started this blog and posted not much. Too painful. So I thought rather than try and organize everything logically I should do what I said the purpose of the blog was:- to reflect the emotions and bleakness of this situation rather than try and convey anything.

Last night was a shopping trip search of codeine. We are not supposed to go shopping for it like this. But since there seems to be a total taboo on getting anything stronger what else is there to do but buy up Codeine and extract it? I don't understand all the hype about "too freely available narcotics". Seems to me you would need a limb hanging off before you were considered for it. And limb hanging off  is unlikely to be near the pain levels of CFS / Fibromyalgia when a "full body" migraine takes hold.

Today it was trying to ward off his feelings that life was just too hard and he wanted it to end. Well if I were him I think I would have ended it long ago. How many years need to tick by for a 13 year old? No growing into an adult. No university. No girlfriend. No life. Just a few school friends who "knew me like I used to be" that are still around. But 11 years has ticked on.

I have to look on. Able to do nothing.