Tuesday, 20 October 2015

Lost my way!

Over the past few months I have beaten myself up about "not being me", knowing that I don't appear to cope with things the same way as usual. 
I seem to get really annoyed and angered by things easily. This can be because of change (which I hate at the best of times), people, choices, planning or organising things. I even seem to be running my life by time limits in which I should have finished or completed something, even simple things like shopping.
Recently this has culminated in me having crying melt downs, often before work in the morning. And just to make it clear, I am not normally that type of person. 

Anyway, after much support from friends who insisted I saw my GP, the appointment I made weeks ago finally came round. 
I didn't know how I would explain or how it would come out, but it seems I rabbited on about everything and got very emotional.
This was the GP I had sought out to be understanding and supportive ....and she was! 
She believes I am suffering stress and anxiety, which is also making my OCD worse too. She agreed with me that it seems to be since returning to work after the operation, back in February/March time. She also said that anxiety often comes alongside chronic pain, that's it's not uncommon. 
I have been referred to the pain clinic, in the hope that CBT may help me get myself back again. 

For me, now I've thought about it, this has been going on a long time. I fight it, and have been a lot, but really I know that's not the normal me. I think that it's because I feel I haven't got that hope to fight for/wish for/wait for, as I have had the operation, the permanent stimulator, that was my best hope! I always had something, in the future, that I was waiting for, whether that was a nerve block, PRF or the stim. I always had the next plan. I just had to be patient. I just had to make it to then.
Now, I don't know what the future holds. I don't know what I am holding on for. I don't know what is going to happen anymore. 
So therefore, I am lost!!!!

Friday, 16 October 2015

Waste of time :/

After building myself up to the telephone consultation...writing down notes of what I needed to say...and thinking that I would know the next steps on this ridiculous, long winded, repetitive journey behind, it was all a complete waste of time!

If it wasn't stressful enough to try and arrange cover for my class, make sure they actually turned up, then run around grabbing my belongings to be able to get to my car to have phone signal and some privacy to be able to take the call, it turns out a 45 minute wait is perfectly acceptable!!!!!
I basically waited in my car for 35 minutes before I phoned my consultant's secretary, but I had to leave a message. Being a teacher, I had to go back in to have lunch to allow me enough time to also have everything ready got the afternoon. Whilst sat eating my lunch, they phone and I have to answer the call in a cupboard, to ensure I'm not interrupted!!!
Frustratingly it wasn't MY consultant phoning, but a member of his team AND it turns out to just be a follow up on how the permanent stim is going!
Biting my tongue, I explain that I'm having trouble with the battery moving still and yes, I did try the abdominal belt. I explain that Mike from St Jude's has said there may not be many more settings available to me either and that these aren't helping the worst pain at all, and that these are happening more often. I add in extra bits about the wire stabbing, he suffers it's scar tissue but would need to be seen.
He asks out my work asking for some questions to be answered and how supportive are they, so I reply honestly that they aren't supportive and refuse a lot of reasonable adjustments that are requested.
He also asks if I wanted a telephone consultation. When I say no, he states that it would be best, with what I've said about work and the issues, if I came into see Mr Patel himself.
YES!! That's what I would have expected before now!

A couple of hours later, his secretary calls to make an appointment for 4th November to see him at the hospital. 

So I guess making any plans is again on hold but just for a little bit longer!! I truly hope I get some answers next time. I need this trauma to get sorted the best it can so that I can somehow deal with it and move forward

Monday, 5 October 2015


Recently I have generally been irritated by my stimulator, no matter what program I use!
I tend to feel it a lot more than I used to, even on low settings, and it is really quite annoying. Because of the low frequencies I use, it feels like a heart beat or pulse in the back of head! It is pretty disconcerting. I used to get this if I rested my head against something that pressed on the lead but now it happens when my head is not resting on anything at all!
I have also noticed that the left end of the lead seems to stick out more than it used to. I'm not sure if this is due to weight loss! Can you lose weight on the back of your neck??

I am still having the battery flipping issue too. 
I am awaiting a phone consultation from the consultant on 14th October. I guess this will be to discuss the issues with the battery and where to go next. I am Hong though that Mike from St Jude's had filled him in on the potential end of the line of settings to try with my stim, as I feel that this is also a big issue that I need to know what options are available ....or not!!

A couple of weeks back I had a coupe of days where I had weakness in my right hand. I have no idea if it is related to my ON but it seems pretty coincidental. I basically went to write something down and I couldn't physically hold the pen with any control. I was unable to write properly and my hand would spasm at points, making my handwriting look all over the place. I continually tried to corvette this issue through practise, but I had little fine motor control for almost 12 hours!! My hand and arm felt heavy and odd and I couldn't generally control it. It was so strange, but it hasn't happened since. 

I have been experiencing higher pain levels for a longer period of time than usual and throughout this have had extreme dizziness to combat too.
The programs I have set on my stim at the moment don't appear to be helping in any way. I either can't cope with the pulse or it is pinchy or too strong, or it is just my everyday program that doesn't break through the worse pain levels. I have usually been riding it out and it drops in intensity within a few days, by this time it hasn't and has lasted well over a week at this pain level!