I need to vent.

All my life with CAH I have been tired, verging on exhausted. When I was younger I would have energy but used it up quickly and would flag...but then it was never acknowledged as being anything to do with CAH.  The impression I also got from my mother was, just get on with life and don’t give in to tiredness. She is now in her ’80’s and has always outdone me and my CAH sister, (but not my other sibs), in terms of energy.

The last few years have been hard for me, as I always seem to gets the most weird and unusual illnesses. The last six months now my legs do not want to work very well and I have a lot of foot, hip and leg pain and stiffness. I have spent the last six months trying to get to the bottom of this problem, visiting my podiatrist, chiropractor and osteopath. If it can’t be solved I will have to give up work, as standing and walking on concrete based floors is really detrimental.

I also cannot be bothered doing anything much at home. Keeping the house running well does not interest me anymore. I do the basics but not with much enthusiasm or energy.

Sometimes I think that for some of us who are older with CAH we have missed out on quite a few of the newer approaches to CAH. We have missed out on optimal dosing in our early days and had mega-doses of cortisone, we missed out on improvements in fertility treatments and remained childless, we missed out on acknowledgment of requirements for stress dosing during illnesses and muddled on somehow etc etc.

In seeking to find research on the ageing CAH patient I am forced to accept that there is no research being done. Therefore I see the future for us older CAH people as being bleak. No doubt they will start when it’s too late to benefit us.