28 March 2014

Pig of a day. One of the foot supports on old smokey broke the other day. I bodged it up until it can be repaired on Monday and the repair keeps giving out. Fiddled around and hopefully it'll last. 

A good friend has been dodging bullets after surgery. She's allergic to most common antibiotics so when she got an infection post-op it was touch and go but seems to be on the mend now. Has a catheter in that may be a permanent fixture. Don't think she knows that I do intermittent self-catheterisation. Maybe it'll encourage her. Not sure. Will have to try to judge if there's a right time to tell her. People can be so judgemental when you're different. 

26 March 2014

Today was an exciting day. I thought. Another day on the Tysabri trial at Kings. 

It didn't start well.  I told my pa that I needed him to come at 9.30 to help me dress. 9.45 and no sign so I battled with my socks and gave up on my shoes, taking them with me. This was the 12-weekly walking test so I had my FES on, but some problem meant it wasn't firing right. Tried moving the electrodes and it seemed right but each time I got up it wasn't right.  The longer I stood the more fatigued I got. In the end I gave up. Frustrated and tired and plain bloody angry. Need to take the orthosis in future as a backup. Grrr

26 March 2014

What does fatigue feel like?  It's easier to say what it's not like. It's not feeling tired. Tired is what I feel most of the time. I wake up after a good night's sleep and still feel tired. I drive down motorways and see the signs "tiredness kills"; if I didn't drive when I felt tired I would never drive. But then if I didn't get out of bed because I felt tired, I'd never get out of bed. 

Fatigue is beyond tired. Fatigue makes me lose concentration. Fatigue makes me drop a lighted cigarette because I can't feel properly. Fatigue makes it near impossible to walk. Or even stand up. 

Fatigue is impossible to predict. It means that I have to set off for home a couple of hours before I judge that my energy will be exhausted to make sure I will be able to get myself to bed. 

Fatigue is the biggest threat to my living independently, because it sometimes leads me to slowly collapse to the floor. Once that happens I cannot get up unaided. Unless I wait for as long as it takes for my energy reserves to recover enough for me to haul myself up. 

When I first started feeling fatigued I was prescribed modafinil. I still take them and without I find it difficult to function. Although a few cans of red bull is a poor substitute. 

My neurologist told me that modafinil isn't prescribed any more for fatigue. And there's no replacement. I'd be very interested to know if any neurologists or pharmacists or pharmacologists have MS and what they'd want to take for fatigue.