Reprogramming

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?

Summer update

It's been a while since I last posted.
Nothing has really changed. I am still having trouble with the battery flipping and the more weight I lose, the easier it catches when I turn over in bed, waking me up and I find that I subconsciously am holding the battery area, as I do when it flips. I am still suffering severely higher pain during my periods, mostly on the second day for a day or up to three. Sometimes this doesn't occur though.
I also seem to get worse pain without rhyme or reason. After a week abroad in which I had a pain free week. I didn't once get out my remote to change programs and didn't really think about it all much. But two days after returning, today I am in so much pain. I tried to ignore it but eventually it started making me feel sick, making me stop what I was doing completely and sit down for half an hour or so. The pain didn't ease, but the sickness did! So I carried on with what I was doing, as I do, to try and take my mind off the pain.
I still don't have a program that helps during this heightened pain.
At the start of the summer holidays, just past the middle of June, I had a voice mail message left from the pain clinic offering a date within a few days to be reprogrammed. As it was my last week of school, things were pretty crazy and on returning the call at lunchtime, I had to leave a message. I asked them to call back to confirm. They never did. I tried calling again but couldn't ever get through at the times I was able to phone. Since then I still haven't heard anything at all!! Disgraceful really!

I have a GP phone call in place next Wednesday lunchtime to get the sick note to allow me to work 3 days a week. Am hoping this all works out, as the GP I saw is not able to call me and has no appointments until 14th September!

So 9 months on, I am glad I have had the permanent stim but now accept that my life won't get back to 'normal', the way it should be. I realise that I need to fight to get appointments and reviews on my progress, as no one seems to bother creating appointments without me asking for them.
So my next step is to see my consultant again to discuss the prospect of another operation to sort out the battery issue, and to get an appointment to be reprogrammed in the hope of finding better program to help with the worse pain levels.

Found a decent GP at last!!

I never used to go to the doctors for much. I never needed to. But for the past almost 8 years, I have gone more times than I can count!

Most GPs have sadly been utterly useless and a waste of my time. Many stating that they just don't know about or understand my condition. Some getting annoyed with me. Others think I'm wasting their time.

But this one....she listened and despite the 10 minutes you are allocated did what she could in that time.

I had chosen to see her as she was young and am guessing new to the profession. I therefore hoped that meant enthusiastic and thorough. I think I got it right!!

I explained the problems I have been having with worsened pain and little support at work, and mentioned the days I've had to have off recently. Of course I said that my consultant had advised that I go part time temporarily.

I explained that I didn't want to do this so close to the end of term. Annoyingly she showed me that you can not forward date a sick more, yet she then offered to write a letter!! I was astounded! I have never felt so thought about and with clear understanding of my needs. She wrote a letter explaining that I will be getting a reduced hours medical certificate in the autumn term and that this will reduce my days to 3 instead of 5 and that this should be at the start of the week. 

She did say that they do not have to follow the recommendation for which days, but she added it to help me out. 

I also asked her to check my chest scar. She said it was unusual but within the 'normal perimeters'. She advised keeping it moisturised and agreed oil is probably best. So I will continue with the rose hip oil. Basically, she thinks it will go durn and stop being so itchy and sensitive over time but to come back to see her if no change by November (one year after the operation).

I will definitely go back to see her in September for the sick note! And she will now be the doctor I ask for! 

Can't believe I'm back to this feeling....

I haven't felt this bad for a LONG time!

Constant severe head pain with random stabbing in the temple and back of head. I knew my dizziness as getting worse and more often but I am back to breaking point, where my work is now affected and I spend my evenings trying anything to help relieve the pain I am feeling! 

This is no life!

Today at least two people said I looked tired/exhausted/unwell. I guess I at least feel that it does show when I am at my worst and some people, who look carefully, do notice. Usually people hate to be told this sort of thing, but it reassures me that I am at my worst.

At point usually is when I have to take time off work. I am begun to feel so bad in class that children start to notice that I am holding my head, or I need a moment because I am dizzy. I start to take out my pain on others, by getting annoyed at nothing in particular and letting things frustrate me, that wouldn't normally.

I am so trying to get to the end of term but as things are, and trying to manage full time, I have already had to take one day off last week, just to help me through. Sadly, I see that this may be the only strategy I have available.

Apart from more reprogramming, and hoping we find a useful setting sometime soon, I'm not sure what else is going to help me now, in terms of combatting the breakthrough pain.

To help my pain levels not to reach this high so often, I am awaiting the GP appointment to discuss reduced hours for the start of next academic year. This is now my only option. 

I am willing to give this a go and I really want it to work!

Lack of understanding

Recently it has become more and more evident that so many people, despite all my efforts, just have no understanding about ON!

My friends who ask and listen have a deep knowledge of the effects as well as how my life has changed BUT it seems that my employer doesn't want to do so!

At the moment I am not coping well with full time teaching. It is draining and exhausting, causing me higher pain levels and more persistent dizziness. This happens in class frequently and it is become an issue.

A month ago I mentioned that I needed support to manage full time until the end of the school year, especially with the added expectation of school reports that need to be completed. It has taken until now for someone to get back to me about this and in the meantime I have suffered such stress that I have been in tears almost every day. I even went to a member of senior management and told them this. 

In the meeting I made it clear how unsupported I feel and the response was "but you've had a phased return!" Do they not recognise that this only helps you back to work not to stay at work!

I truly feel that this condition is so hard to get across to people because they are not interested, probably because you look "well". There are other members of staff with other more well known chronic conditions, who get support to manage at school, whilst I get nothing!

Sadly, I know I am going to have to see my GP and get a reduced hours sick note in place as soon as possible, ready for September. This is the only way I can get across that I am not coping!

I guess I might have to admit to myself that I might not ever manage full time teaching again, but I am not ready to totally rule that out just yet! Partly because of routine and stubbornness but also because I don't know what else I would do! 

I am sure that a different job would be more manageable with ON but I just don't know!!!

Scars and wires

Thought I'd update on how my scars are doing, as feel like I haven't for a while!

I have been on holiday recently and wasn't bothered by my stomach scar at all! In fact you can barely see it now I'm tanned!! Am pleased with it, especially considering how upset I was with it initially.

It will be ultra annoying if I do need another operation to anchor or move the battery, as I'll be back to square one. But presumably my stomach seems to heal well! 

My head scar isn't bad, as I've said all along, it's just the loop of wires that bugs me and is far more obvious than the scar itself.

You see the round circle of excess wore and its this area that protrudes and therefore itches and annoys me, as I feel it when I put my hair up etc.

My chest scar is still just as bad, in my opinion. The flat half is barely noticeable but the raised half is pink and taught, meaning it itches, is sensitive to clothes touching it and is obvious even through clothes with mesh or lace at the top. I really want something to be done about this scar. 

Forget the ugliness, it's more abut the over sensitivity that I am annoyed by more. This is constant and isn't getting any easier!!

As I have mentioned before, I have had an issue with the battery and wires moving since February. The wires are still noticeably lose and the excess loop can still be seen. I am sure it has moved slightly to move over my ribs than the space underneath. 

This proves to me that the battery has moved upwards.

Update about appointment and issues

I have been so crazy with work since returning to full time after my phased return, so just haven't had the chance to update.

I have found it really demanding and pain levels have most definitely been up high a lot more than before. The stimulator still isn't taking those pain levels down easily and I basically have to see them through.

After seeing my consultant on 6th May, I am basically in a bit of limbo. He was understanding about the battery movement issue, so much better than I expected. He said he may be due to muscles building up behind the battery and pushing it out of place or may have happened anyway. Again, he didn't suggest stopping going to the gym, which I'm glad of as I still feel it helps to strengthen my muscles. I feel much less shoulder and lower back ache than I used to.

He also suggested that I may need to have surgery to place the battery somewhere else. He still agrees that the chest is not the right place for me, but suggested over ribs on the side (which I don't like the thought of, as surely it ca be knocked easily and it will protrude through the skin) or in the buttock area. I did say that I liked where it was, just want to stop it moving and asked about somehow securing it in place. Apparently it can only be secured on side, but he was outwardly talking about using a mesh, like in hernia ops to do this. If I have to have surgery, I hope the latter choice can be done!

For now though, he has asked me to use a waist belt to help keep the battery in place in the hope that it will scar back into place. This one is all I could find that seemed to be what I was after, and that wasn't too tight so I could move in it.

To be honest, I don't use it everyday, as I have clothes that keep it in place. I do wear it when teaching PE particularly, as tracksuit bottoms are lower than my work trousers and so push the battery from the bottom constantly.

I have found that wearing dresses actually doesn't make the issue worse. I thought that having no clothes to hold it in would make the issue worse but actually it seems that clothes are a big part of the problem. They seem to be the thing that pushes the battery and flips it. I have realised that I now seem to bend or squat over in a different way to try and avoid the battery moving though. 

So it is happening less, but due to my changes. If I try to grab the battery, I can still hold the top away from my body, which I shouldn't be able to.

My consultant also agreed that going part time, even temporarily, may be the way to go. He said that the stimulator was never meant to get me back to how I used to me and that it is only a way to manage and reduce the pain, not eliminate it. He said that I am the best judge of what I can manage!!

I therefore, spoke to my work about this but that I don't want to do this until maybe after the summer. I feel it's not fair to my class to make changes in the last term of the school year. This was over 3 weeks ago and I still don't know the plan. 

The first day into work this term I had a break down about the stress and overload of work. I broke down crying at home and couldn't stop. Before half term I had 3 moments at school where I had to stop myself crying due to the stress and pressure. I don't feel myself at the moment. I am not coping well and the pain levels are high more often than they been for about half a year! All I can do is wait and hope that I get the support I need from work. 

It is so wrong that this condition can be so misunderstood and ignored!