Tuesday, 15 September 2015

Scar update

Thought it was about time to share how my scars are! 
Overall they are really good!
My stomach one is the best. 
You can barely see it now! Only problem is, I am almost certain I am going to end up with a new incision there, to sort out the battery movement issues. Shame really!!

My chest one is still irritating. It's looking slightly better but still very obvious compared to the rest, and the other half of it. 
It is still really itchy and sensitive when clothes or hair touch it. I am constantly itching it but it hurts to itch on it, so I am always trying to scratch around it. I am sti using rose hip oil on it, but really it just soothes it temporarily as I don't think it is making it look any better anymore.

My head scar is very fine and barely seen but it's the excess wire loop that is noticeable.
I do wear my hair up for the gym and that is manageable but I have worn my hair up for work a couple of times and by the end of the working day my head is tight and achy, so I can't keep it up any longer.

Sunday, 13 September 2015

Work place assessment

Finally, after years of seeing Occupational Health and the same doctor recommending me having an assessment of my workplace, to see if there is anything that could be done to support me at work, I had this on Thursday 10th September.

Typically my school weren't prepared for the arrival of the registered nurse undertaking the assessment, which annoyed her no end! 

She came into my classroom for about 45 minutes and then I chatted to her whilst the class were in assembly! I then had to organise someone to take them out to break (in the middle of my meeting) and then had to interrupt once again to ask someone to organise cover for my class for a further 15 or so minutes! The nurse was outraged that cover hadn't been sorted beforehand, as it was supposed to have been! I tried to explain that this is usual for me! 

Anyway, she was thrilled by my teaching and pleased that I had done what was under my control to ensure the classroom was suitable and that I could use areas with as much ease as possible, and that I endured I didn't twist my head too much whilst using the computer at the front of the class. She was appalled that I had a rickety old desk that I had had to provide myself and that my chair was broken and therefore not supporting my back efficiently. 
She also recommended that I undergo a stress risk assessment, as obviously in a highly stressful job, she is aware that this has an impact on my condition. She kept saying "remember it is just a job" and "one day at a time"! It was great to here these things from someone who was solely there to think about my welfare. 

I then showed her where we do our lesson planning when out of the classroom.....and she was disgusted!! She couldn't believe that anyone, let alone me, was expected to use that area to plan on a computer for 2 hours at a time. She wrote many things to add to her report here, including lack of adjustable chairs, broken keyboards.

I am so looking forward to reading the final report. It will make an interesting read. And I wonder how many of the recommendations will actually be sorted or taken up??

Monday, 7 September 2015


So after a fair few days of feeling utterly awful, super dizzy and often feeling sick and just 'not right', this reprogramming seems to have been at a good time.
Today is also the first day "signed off" under reduced hours on a medical certificate, following my consultant's advice a while back.
Due to a mess up from the pain clinic in July, I haven't seen Mike from St Jude's since March, but saw a different rep back in May. I filled him in on the fact that I am only really using the same 2 programs that I have done since he set them at least back in March and that nothing makes any difference when there is breakthrough pain, and that I just have to ride this out. I also mentioned that these episodes have risen in frequency, despite having the summer holidays without work they still occurred fairly often.
Mike reminded me that as my lead is very close to the occipital nerve, I am only using very low frequencies of 2hz. He explained that during the operation Mr Patel goes down to the point if seeing the nerve, to ensure the lead rests in the correct place, but that usually this still has a small distance between the actual nerve and the lead. He believes that my lead is literally sitting on the nerve, which is why it is so sensitive to the stimulation. Also every contact on the lead gives me sensation, when usually there are points where nothing can be felt. He explained that this makes it more difficult to find a setting that is comfortable and also cuts down the scope for creating a range of programs for me to choose from, as I just won't get the range other people would. Therefore, he feels that it is getting to the point where there isn't that much more that he can do.
This is not what I expected!!!
I understand what he is saying and I understand technically what he means, but I just can't get it! Why is it always me?!! Other people won't have this issue as they would get far more range of frequencies that can be chosen and used.

So, he decided that we NEED to try some higher frequencies, as we aren't getting the best results from sticking to 2hz. Also, apparently if we use lower frequencies that are slower, such as 2hz, we are more likely to stimulate small nerve endings nearby, which cause the pinching I often feel, meaning we can't use certain setting or turn the up higher in that range.
After a lot of fiddling around with frequencies and me getting tweeked and twinged a fair few times, we managed to find a setting that allowed 10hz and then one with 20hz. Mike feels that these might give me something new for the nerve to feel when the pain is at its worst. He is interested to see if I can use these settings and whether they will be useful on a lower range for working and moving around, or if they can only be used when inactive, due to the intensity.
At least I've got a bit of hope still. These could be the answer. If I don't try something different and out of my comfort zone, then I am limiting the benefit of the stimulator. Hopefully these will give me something else to use when needed.

After a little thought, I know it is all just how the cookie crumbles, but surely if the lead wasn't so close to the nerve and was raised up a little, then I could handle higher frequencies and give myself more of a range of programs that I could cope with.
Would Mr Patel be able to change where the lead is in the future?