Bad

dehydrated, shattered. Pretty well slept since midday, ache, dreading the hoist. Everything hurts.

Bad

Ridiculously hot, stomach cramps, back pain, foot hurts and my dongle fell out before the end of the girl with the dragon tattoo.

Good

meds taken, washed, fed, joked with daughter. Speedy response from catheter team, booked 2 gigs, plotted the revolution on line!

Bad

Pretty much slept all day. Raging headache. Sweats. Catheter blocked. Pain at night. Urine painful and concentrate. Back ache.

Email exchanged with Dr Gu

Rachael sent an email to Dr Gu saying her catheter was completely blocked and requested an appointment to amend.
Dr Gu responded advising Rachael to get the District Nurses to try a "wash-out" and will arrange catheter change with OPD.
Dr Gu emailed back later on saying a catheter change appointment had been set for 14/12/10.

Take a deep breath!

Tuesday 9^th November 2010. I was admitted to Hospital for a Supra-Pubic Catheter insertion. The anaesthetist was amazing. Even my inappropriate giggling (emotional lability) as he injected my spine, didn't phase him. I haven't been called bach for a good many years, it was comforting. Eventually I was given midazolam and sedated. The anaesthetist explained the added risk, inherent in sedation, for patients with MND. I had every confidence in him.
Both before and after the procedure, the Respiratory Team under Dr. B put me on a Non Invasive Ventilation Machine ( NIV ). This afforded me enormous relief.

Ordinarily I struggle with extreme tiredness and headaches. It takes such an effort to breathe in and out that I am exhausted and fatigued before I even attempt to do anything else. I do not feel the benefit of a night’s sleep and wake already feeling shattered. When I am tired I have a weak gag reflex, causing me to choke frequently. I also find it difficult to speak or use what little mobility I have left, including control of my power wheelchair or Eye-Gaze computer. Breathing is effortsome and tiring. Often in order to catch a breath I need to jerk my head backwards. As well as being dangerous, this places strain on my neck muscles. I already have a neck brace to assist in holding my head up and need to avoid unnecessary trauma.

When I used the NIV I did not have to make the effort to breathe. I was able to relax and woke feeling refreshed and strong, in a way that I have not felt for a very long time. This effect lasted for a good few hours after a relatively short session of less than an hour.

The only other time I feel anything like this effect is being driven in the car with the windows down. This effect however only lasts as long as the car journey and is a poor comparison.

Despite the results of my Blood Gas Tests being consistently within acceptable parameters, I felt such benefit from the NIV that I would like the opportunity to use one at home. I am confident that having access to an NIV would greatly relieve a number of my symptoms. Used regularly, perhaps overnight, I should wake feeling refreshed and energized without the sluggishness and headaches that I currently experience. With an NIV at home I would also be able to alleviate symptoms when my breathing and speech becomes laboured and difficult.

Neutral

up and cleaned just a back ache now. Looking forward to a shower