Sunday, 27 December 2015

Sharp pains around battery & wires

For the past couple of weeks I have been having severe sharp pains in my abdomen, around the battery site and wires that go over my ribs. 
It was worst when I was running at the was so bad that I had to stop and was hunched over in pain! 
I have continued feeling this pain on and off randomly and get sharp stabbing pains of this too, that make me jump and wince.
All I can think of is that my stomach muscles are now pushing against the battery & wires and making them move. 
I really need to see my consultant but I have been contacting his NHS secretary since the beginning of December, via phone calls and email, but haven't had a response. I am supposed to see him in the new year, as he said when I saw him at the start of November. This time is truly urgent and I need a plan of action to help me physically and mentally. 
Currently I am stuck. Stuck in the same place I have been many times, over and over, but with work being less understanding or caring and with me more frustrated than ever before! I need to get on with my life, and manage whatever it is I can. I know family is more important than a job but I want to have that opportunity!

Today I have turned off my stimulator to see how I am without it. Mike, the St Jude's rep, suggested this back in November when he saw that I was generally down about it all. Well, all I know is that the stim definitely does something! Today I have exhausted, pressure in the back of my head and far more dizzy. 
At least I know it has been worth it for a little relief. I just need more relief to be able to believe I can control the worse pain better and therefore function when I need to. I also need this added abdomen pain and battery flipping issue to stop!
When will this all end!!??

Wednesday, 16 December 2015

Occupational Health are so understanding!

I have just returned from an Occupational Health appointment that was actioned by the OH nurse that called the other day. I have seen this doctor many times and he has always been fair and has ensured he has learnt about my condition in order to understand and recommend useful things.
Today, he could just tell something was different!

I know he has access to my medical records but he straight away mentioned the affect on my emotional state. He questioned me a lot on my mental health and that of my family and although he knows my situation is different, he shared that more recently he has had a dramatic rise in the number of teachers that are suffering unmanageable stress and anxiety.
He mentioned that I looked uncomfortable, anxious and that my body language was different to normal. He shared that I usually seem such a resilient person but that today I don't come across in the same way.
Basically, he just got it!

On top of all this, he discussed in detail how long term chronic pain can affect people's mental health massively and recognises that I have always had a positive outlook on my condition and future until now. He shared how when he attended train about chronic pain, held by apparently the pain management doctor that I am waiting to see at the pain clinic, they ensured the doctors attending the course truly understood chronic pain and its daily impact on people. He said they all were given a large, strong bulldog clip that they had to put on their finger and then continue listening to the training. He said every so often they were all told to leave the bulldog clip on, but that people were shaking their hand in pain and seemingly not paying attention to the speaker any longer. He said that if they put their hand under the desk, no one would see their pain, so therefore this was what chronic pain is like....every day....for people like me!
I found this truly interesting. That, one, this OH doctor really does understand, and that, two, there are people out there that understand pain and are doing what they can to help people like me. I am looking forward to the referral to the pain clinic now.

So, after masses of discussion about my family's mental health issues, my referral to mental health and that I am awaiting a review to hopefully get offered CBT, the school referral for counselling and the lack of support and understanding I face at work, he suggested that I don't go back into work this term. In a way, I am relieved that the decision has been made for me. Everyone has said I shouldn't go in before Christmas, but part of me thought it would help me make a decision before the new year about if I could cope and I would see my lovely class. However, the OH doctor said that until I have a meeting in place (which I asked for over 2 weeks ago....typical) and that a stress risk assessment is underway, then I shouldn't go into work. He also suggested that the CBT and counselling should really be underway too, so that I have some strategies to support myself through it. He mentioned that he will also recommend a case conference but that only my work can actually request it.

So there's that decision. Made. 

Overall, I feel an understanding that it is out of my control to take time off work due to ill health
That this isn't my fault and that the accumulation of everything my life holds has brought me, perhaps inevitably, to this point. 
There seems to be more agreement by others that my work place aren't making my life any easier and that that isn't ok.
And therefore.....perhaps I can stop beating myself up about not being at work. Stop trying to control things that I can't control. Just take each part of my life a little at a time and that's just how it will have to be until I know more about the next operation to potentially change the battery.

Perhaps I will look back one day and the decisions I am now being forced to take will be the thing that changes things for the better, or steers them in a better or more interesting direction.
Who knows???!!! 

18th December - visit to see my class for Christmas

So, I decided that I wanted to see my class for Christmas, as I had made then cakes and written cards for each of them.
On the way there though I was super anxious. I had the shaky leg thing again and had to get a friend to meet me at the entrance to ensure I made it in. I popped by the office to hand in my sick notes, but it was a fight with myself to stay! I felt sick to the stomach and all I wanted to do was run away! I've never felt like that before! I was scared! There is no way I could go to work feeling this way, as I knew at this point no one could ask me to do anything or expect anything from me! 
These feelings really worry me! All that kept me there was the chance to see my class.....who didn't disappoint! They were so excited to see me & obviously truly miss me. I am so in two minds. I know that I am a good teacher, who does everything I can for my class and they respond well to me! I am experienced and knowledgeable and the parents trust and like me...... YET I just don't feel I can do it as well anymore. Sharing my class is hard enough but having to fight my pain, my feelings and the constant battle with life etc, it just has become too much!

Monday, 14 December 2015

Not sure of anything much....

Thought it was about time to update on how I am doing pain wise and on stress levels.
It all seems to have calmed down, in both senses, due to not having to cope with work as well as everything else. My pain levels, although I do have off days, seem to have lowered enough to manage. My stress and anxiety is better than it was. I am sure I am not actually 'better' as just not having the unplanned and super stressful work aspect, makes a huge difference. 
I am attempting going back into work in a couple of days' time so we shall see if things are any better for me, I guess.

It all worries me massively, as I don't know what to do with my life!!
I obviously can't really manage my work at the moment, and again, as I am awaiting another operation to sort the battery issue and maybe change to a different battery altogether, then I am again stuck in limbo. Things COULD get better but who knows how much better and what that means for me life.
In the meantime, teaching just gets harder and more ridiculous and unmanageable for healthy, well people, let alone for me! And also I then have the battle of getting helpful support at work but also my own issues with not having a class full time to deal with.
To me, this all just seems to much to manage, especially workout knowing what my future holds in terms of pain and how much I can control that pain.

So, small steps at a time. 
I shall go to work for the last 3 days of term and see how I cope and feel.
I shall see if and what support is offered or changes made to help me cope at work.
I shall wait to see when and what happens in terms of the next operation.

So basically....who knows what the future holds for me, and that's what I HATE!!

After speaking to the Occuptional Health nurse that visited my workplace back in September to do a work place assessment report, she is suggesting a case conference so that my work can't ignore my situation any longer.
This sounds good to me!! Someone finally appreciates that I am losing the battle with my work, despite how hard I try. She also agreed that it could be a massive part of what is causing my anxiety and stress.
So I've got an OH appointment this week to see the doctor and begin the process. 

Saturday, 21 November 2015

Worst pain maybe ever!!

Recently I have truly been suffering.
I've had days where I moan from the pain or pace around because I don't know what to do about it! This is not good!

As I've mentioned, being in severe stress and anxiety is obviously not helping at all! Therefore I have had to make the difficult decision to stay off work for a little while. I didn't want to do that but it's one of the only things I can control that then takes a lot of stress and worry out of my life. It means if I sleep badly, I can lie in in the morning. It means that I don't have so much that other people put on me without understanding how I am feeling. It means that I can have the time to try and sort myself out mentally as well as try to manage my head pain.

I did have one moment though, where I used one of the new programs on my stimulator (the 10hz one) and I think it actually lowered my pain. I was super dizzy and in huge amounts of pain so I sat down and put this program on for 10 minutes or so. I could still feel the crushing head pain at my temples while it was on. But shortly after, and I mean minutes after, it was gone. The usual dull ache was still there but the worst was gone! I had also taken ibuprofen and paracetamol slightly earlier in desperation but surely they can't have helped like that! I'm sure I'll get to try out this program again soon enough.

Wednesday, 4 November 2015

Even more waiting!

After attending what I thought was a consultation appointment with my neurosurgeon, it turns out it was a reprogramming session. Luckily I picked up my remote as u went out the door!!
For the first time ever I was emotional! I held it together but I know my voice was wavering. He went to get Mr Patel to discuss my issues with the battery moving.
When he came in the room, I was slightly less emotional, as I always feel I need to be matter of fact with him. I explained that things have been worse and that I'm now suffering stress/anxiety due to everything in my life. He asked if everything in my life was difficult and not right, and I replied that the only right thing was my boyfriend!! He replied that that was something to reflect upon! I know he's right but at the momen it doesn't feel enough to keep me sane!!

Mr Patel then discussed the questions he'd been asked to respond to by my work, saying that he was, as always, non commital but clear that there is every hope that I will be able to get back to work as normal but that the operation to implant the stimulator was not a 'silver bullet'!!! He said that he explained that it needs a lot of manipulation in order to get the best from it.
This made me feel that he had done what he could to support me in all this.

We then discussed the ON. I said that things had been far worse and that the stim hadn't been much help over the past couple of months. He asked (playing devils advocate) how would I feel if he was to take it all out. I didn't rush to say "no" but I did say that I wouldn't want that as it would hard to get it approved again. He talked about having it moved to over my ribs, which I said I wouldn't want as it would be in the way. He explained that in that case, potentially the best option would be to suture it down in the hope of securing it in place. Then he went on to say that if he was to go in, it might be that he contemplates a change of battery type, to avoid having to operate again. 
He said he'd make an appointment for a couple of months time for me to see him then and discuss all this. 
I don't really see why we have to wait! I'll have the same issues then as I do now, and it just means waiting longer and suffering more!

Mike, from St Jude's, then explained that the new type battery works differently and uses different waves so that the patient didn't feel the 'annoying' tingling feeling. He also went on to say that he might recommend adding a new and different lead as well, as this could allow the frequencies to be lower as the lead isn't a paddle but the contacts go around the whole lead, meaning that only a small percentage is emitted to the main nerve.
I guess at least there is still some hope for this. Having a plan for me is critical, and I did say this. So let's hope they find the right answer soon!

Then I had to go through the reprogramming. He seemed a bit lost as of what to do, but set two new programme that are a replica of my first setting but using higher frequencies, 10hz and 20hz. He then said that after discussing these kinds of issues with a professor who works at a hospital in Queen's Square, they find that 70hz seems to be most useful and that's where they start with every patient. Therefore, he set the same programme but with 70hz.
So 3 new programmes to try out for a little while.  

I'm not really sure how I feel. 
On one hand, I HATE waiting! I'm not coping now so why would waiting help. Also, it's just putting it off.
On the other hand, at least there's a plan. I don't know if it will happen or even if it will help but at least there's something.

So guessing, once again, time will tell. But in the meantime, I've got to somehow manage and get by, and also see how I cope with work! Whoopee!!

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!

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?

Wednesday, 26 August 2015

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.

Thursday, 2 July 2015

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! 

Tuesday, 23 June 2015

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!

Sunday, 14 June 2015

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.

Sunday, 7 June 2015

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!

Sunday, 3 May 2015

Waiting on next appointment.....

So, after a lot of messing around with appointment dates, I have now got a date to be reprogrammed as well as to see my consultant about the battery flipping issues. Not too long to wait, as is the 6th May!!
I really don't know what to expect from the appointment. I just hope he doesn't suggest its something I'll have to put up with, like he has with the other little issues like the ear numbers/pain and the raised scarring. I can not live with this!! I am already becoming used to the awful feeling and the potential for it moving constantly. I have noticed that I often hold my stomach now to help stop the battery moving forward! That is not something I want to do forever!! I have also discovered that my hip seems to hit the bottom of the battery which also pushes it out when I bend forwards. 
I guess I shall just have to wait and see what is suggested.

I am also going to get his opinion on potentially going part time. I know he feels that his patients should be able to continue with their life as before, but my job is so much more stressful than it was 7 years ago and so reducing stress surely reduces more of the triggers for my worse ON pain days.

I'll update after the appointment in a few days time.

Wednesday, 8 April 2015

Update on scars

Apart from still suffering from the battery flipping and the wires stabbing, most of the scars are looking really good.
My abdomen scar is fantastic, especially remembering how unhappy I was originally. It is barely noticeable now and really flat.
I guess the rosehip oil is doing a great job here!

My chest scar is still the same. The raised keloid part is still just as raised. It still itches and hurts a lot. It is often really itchy but due to it being so raised, it hurts to itch it. The other half though looks really flat and barely noticeable. How annoying!

My head scar is great and has always been very thin but the loop of wire is getting more obvious and sticks out more. It too is often itchy and sore. 
It really difficult to get an accurate photo but you can see here that the loop of wire is obvious and it goes directly under either side of the original scar.

So, I'm not sure what the future holds with all these issues.
I still haven't heard back from my consultant, although the St Jude's rep called a week ago as he had been told there was an issue with the battery. I explained the problem with it tilting forwards and he of course said I would need to see Mr Patel, but that he felt from experience I may need to have the battery replaced slightly. I really don't want another operation!!!!!!! But I can't put up with this happening for much longer. The other day I bent over to put something away on a drawer and it flipped 90 degrees forward and got stuck. I had to push it back in! Utterly hideous feeling and it happens more and more when I bend over or put my right leg up. So unfair!!!!!

Update: 14th April 2015
I have had a letter through with a date for a neurosurgery follow up appointment, but I have no idea if that is to see Mile from St Jude's to reprogram the stimulator or to actually see Mr Patel about the battery and wire issues. I guess I'll just see when I go. It's not until 13th May, so I've got a little while to wait now. That's annoying but at least I'll be back to full time work by then, so will have truly tested it all out properly! 

Tuesday, 31 March 2015

Battery flipping and wires stabbing!

I have been putting off updating about these current issues, as I was hoping they would sort themselves out!
It's been about 4 weeks now, so I guess not!!!

First problem:
Since that start of March, so just after I saw my consultant (typical) I noticed that my battery seemed to flip forward when I bend over. It seemed to happen when I had trousers where the waist line was on or below the scar site. It doesn't happen with my gym leggings or work trousers, as these are high waisted. 
It then seemed to almost get caught in the forward position and then catch on my ribs. A couple of times I have more or less had to push the battery back in as it is stuck. This not only feels hideous, it makes me feel sick for a split second. 
I now fear this happening everytime I bend down or over and so am starting to hold the battery site when I do bend over.

I know this photo isn't pretty, but this is me being able to hold the battery forward with my finger behind the top. This isn't normal and didn't happen before I pulled the wires off my ribs.
The wires are still off my ribs and haven't scarred back down totally! To me, this shows that there is now excess wire so the battery must have moved upwards slightly.

Second problem:
Since 13th March I have also been experiencing sharp stabbing at the back of my head, but where the excess loop of wire is. It happens for a few seconds but is often so intense it stops me in my tracks. It feels very sharp and quite often that area is also very sensitive to touch and hair movement.
I have been keeping track of this and it seems to last for a few days and then go for about a week and then continue that cycle.
I am not sure what is causing this. Whether it is more disturbed nerves (due to my over sensitivity) or it is the actual wires causing this feeling! Who knows!!! 

So over the past two weeks I have left two answer phone messages with my consultant's secretary and emailled but only just heard back today. Although, she seems to have not understood, as Mike from St Jude's phoned me thinking there was a problem with the battery. I explained the issue and he thinks I may need to have the battery replaced further down as I have already experienced this for four weeks, which is long enough for it to scar back down. 
I REALLY don't want that, but also I can't put up with this awful feeling and worry whenever I back down!
He is suggesting an appointment be made with my consultant for after Easter, as he is away at the moment.
Guess we shall wait some more ....and just see what he has to say!!! Grrrrrrrr!!

Thursday, 12 March 2015

Link between menstrual cycle and head pain??

For a long while I have been keeping an eye on when my worst pain seems to happen, and many times (not all) it seems to be the day after I start my period.
It comes on suddenly that day and lasts a few days without any let up at all! Nothing seems to help at this time, I just have to wait for it to go.
I have researched this and asked other people with ON and many say the same. The pain management doctor I saw last week also said it is very common.
It seems that the lack of the 'pill' controlling my hormones makes the pain worse. I was advised to take more than one pack in a row, but I have always taken 2 packs together and my body gives up if I try to take more! 
I'm not sure how to deal with this. I guess it is possible to consider a different type of contraceptive that stops periods altogether but others have said that what would be their 'time of the month' is still when they experience worse pain. Also, hoping to start a family some time soon ish then I am going to have to come up contraception altogether.
I don't feel there is much benefit in changing things and maybe solving the issue just to make it potentially ten times worse soon. By still having done worse pain, I can continue to experience this and get used to it, rather than feeling well and then throwing myself right back into the worse pain! That seems worse to me!
Basically, I don't feel I have an easy answer to this at this time in my life!!!


Last week, the day after my follow up appointment, I had my third programming session with Mike from
St Jude's Medical that provide the implant. 
I desperately needed some programmes to try and help my worse pain days, as nothing was breaking the pain I had last week! On the appointment day it was the third day of severe constant pain. This was the longest I had suffered since the op.
We set another 4 programmes that are all extremely low frequencies, all at 2Hz. I obviously seem to know the ones that are too much for me, as I mentioned the programmes set from before that I hated and made me have goose bumps immediately and these were set at 150Hz, so we are never going that high again!!
There is one setting (program 13) that seems different, as it spreads out the higher it gets. It's strange though as you can feel the tapping through my skin, close to my ear. It's more or less at pulse band width, so it pretty slow. Apparently I seem to like these most!
Although I spent as long as possible, day after day, with this setting up pretty high. I still couldn't break the pain. It eventually subsided 5/6 days later! 
I'm not sure it was the implant though, I think it had just been long enough.

I am continuing to leave the stim on day and night on my low setting (program 8) as I barely feel this one.
We shall just see what happens, as always, I guess! 

Tuesday, 3 March 2015

Follow up appointment

Today I had an appointment with the pain management doctor at the Pain Clinic. I was expecting this to be discussing my pain levels and a check up of my incision sites.
Well I have to say, it was the oddest of hospital appointments ever!!

After waiting 30 minutes, a lady collected me and introduced herself as Lucy, another of the pain doctors. She questioned that I have an appointment with my consultant tomorrow as well, and when I confirmed this she says he was also here today. Now I didn't realise this at all! 
I entered the room and there was Mr Patel and Dr Love-Jones, the pain management doctor I was supposed to be seeing, or so the letter had stated. (Also she has been my anaesthetist quite a few times).
So they basically started asking me questions about how I now felt, if I was glad I had had the surgery, what percentage did I think the pain had improved, whilst making notes about what I was replying.

I mentioned that I had noticed a pattern with some of my worst pain episodes, and that they link with my periods. Dr Love-Jones said that is fairly common. We discussed having less breaks between packs of contraceptive pills. She also suggested leaving the stim on overnight so that maybe it will help not have the worse days as often. 
I said that I felt it had improved my pain by 60-70% as every day is great but the worse days can't be controlled by the stimulator, although these episodes are less often than they used to be. Mr Patel said that I would be meeting with Mike, the St Jude's rep, in the appointment tomorrow and that I obviously need some new programmes for those times. 
He also asked about if I had got back into my fitness and how the wires that has been moved were. He was really happy that I was back at the gym and that the wires were now settling back into place. 
Dr Love-Jones asked about what causes the worse pain episodes, to which I explained it seems to be tiredness and stress which is what my job is all the time! Mr Patel mentioned that is had many phases returns to work. I said that I was hopeful that I would get to full time but that I was considering part time, as now I've had this operation I can see what I can manage longer term, and he thought that was a good idea and that the implant wasn't going to fully improve my life!

I also mentioned about the change in the feeling if my right ear and that it is almost painful when hair or anything touches it. Mr Patel thought that this should return to normal within about 6 months. 
I showed them my chest scar and explained about the sensitivity and pain and that I had been using the Haelan tape. Dr Love-Jones suggested not using it anymore and if in 6 months to a year it was still painful, then maybe silicon gel (that plastic surgeons use) may be helpful. Mr Patel suggested using caipsin (the chilli stuff) to help distract from the pain. I've got tiger balm still from many years ago, so maybe I'll try that!!
Mr Patel also said that I have become very sensitive and sensitised which is common for people who suffer from chronic pain apparently. So the extra things I am dealing with are because of this over sensitivity.

And that was it!!!!!!!!!
No one checked on my scars at all!
So I'm guessing it was a chance for them all to find out how it has worked for future reference. I guess I'm a bit of a guinea pig and they are keeping notes on how it's good and if it's worth it for others. 
I don't mind at all ....but it would be nice to know what was going on. 

Update on my scars

I've been meaning to do an update on how my scars are doing and what they look like over 3 months after the surgery. 
My head scar looks pretty much the same, as it healed pretty quickly and neatly. I think the loop of extra wire is now more obvious than it was, as all swelling has gone now.
My hair has now got to an annoying half stage, which it's too long to be unnoticed but too short to pin up or wear within my ponytail!

My chest scar is still very lumpy (well, half of it) and the sensitivity is still high when brushing on clothes or if my hair touches it. 
I have now used the Haelen tape for about a month but I can't see any improvement or difference in how it looks at all. It is still just as raised, just as red and shiny and just as sensitive. 
Immediately after taking the tape off, the scar does seem flatter and the skin around it is paler, almost white! This calms down overnight but then the scar raises back up again too. Sometimes whilst wearing the tape, the area become very itchy and the tape seems to pull on the area. At most it seems to helping with clothes touching it during the day, but there are times when I feel it needs to have a rest and so I leave it open for the day, with just some rosehip oil applied. 

My stomach scar is just becoming less purple and healing well. It is straighter than it was and does not seem to be wonky or puckered! Even though I am not back at the gym properly and losing weight again, this does not seem to affecting the scar's look or shape.

Sunday, 1 March 2015

Metal detector experience

So I said I would share my experience of going through the airport security avoiding the metal detectors, as I've been recommended to do.
I have to say the experience at Bristol airport was so easy and I did not feel like I was being annoying at all. I explained to the nearest member of staff and showed my card (which, to be honest, they didn't really care about seeing). They let me past the metal detector, through a gap and a female member of security patted me down. I was then asked to stand on a circle and raise my arms, turning slowly in a circle. I can only guess that this was a different type of scanner but it wasn't really explained, just that I was fine to go in it. The female security then chunked a couple of areas (bra and belt area) and that was that! It took slightly longer than my boyfriend going through normally but overall not too bad!!

It was a lot trickier abroad ....especially as it was Egypt, which is a military airport!! We asked spoken to out Thomson rep on the return transfer and he says he would speak to security for me. 
We joined the queue and before we got to the end he had spoken to the security at the scanner. They made a gap between the luggage X-ray and the metal detector (by lifting and moving the conveyor belt across slightly) so I could just squeeze through the gap. The other side a female member of staff patted me down and that was it! This was very easy and not too much fuss!! 
The problem was that this airport had another security area with more metal detectors after check in. We were on our own here without the rep and been unaware that there was another security area. So, we tried to explain to security on our side of the scanners but the man says he didn't understand!! We were now panicking!! There were no gaps between scanners and no one else our side to talk to. I sent my boyfriend through first to try and explain to someone on the other side. Luckily this worked!!! They understood and allowed me through a scanner that was turned off down the end. No one escorted us there, so we just moved something to make a gap, which again I squeezed through. As I walked back up to the other scanners, a member of female security patted me down and that was that!

Overall, I think it will be pot luck when abroad if someone understands your issue or not. It would be so much easier if the card was a standard one for any implant device so it was internationally recognisable. 

The worst experience of all though was at the hotel!! 
You know what it is like when you arrive, tired and grumpy, after a long flight. You get ushered into the entrance of the hotel to check in and to your rooms as soon as is humanly possible! So the front door is opened and a fair few holiday makers enter before us. We follow, but without any warning, or sign, or anything, we find ourselves immediately walking through a metal detector with a security man sat with his desk right up to the edge of it. As soon as I walked through I realised and I felt a massive thump to my stomach area, where the battery is. I now can't work out if that was reality or panic and anxiety about going through the scanner but all the same, it was expected and totally invisible, especially with loads of people walking in ahead of you.
I tried to explain to reception staff at this point but they didn't understand. I used the word 'dangerous' but they took this the wrong way and got stressed about it. Instead I went to our room and immediately checked the implant was working properly, which luckily it was.
I decided the only thing I could now do was to inform the Thomson rep so that other people don't have the same issue in the future. 
I hate going to rep meetings on holiday, but I suffered all their spiel and waited until afterward to speak to them. I spoke to the English rep, as I presumed she would have more chance of understanding about my implant. She didn't!! I told her the issue and she just looked at me blankly. So, i reiterated the problem and what this can mean to someone like me and she stared at me then casually said she would suggest the hotel put up a sign. No apology. No understanding. No humanity at all!!! I basically left that meeting knowing that things are always going to be difficult for me to get people to understand and see things from my point of view. 
Funny enough, no surprise, on leaving the hotel at the end of the holiday, there was no sign, no warning, no change. The security man was still sat with his desk more or less touching the edge of the metal detector. I tried to explain I couldn't go through it, so that I cook take my luggage outside, but he basically laughed at me. He had no idea what I was talking about. So I had to squeeze past him, whilst he laughed, which made me feel so uncomfortable! 
I think this is probably a bad experience compared to other places or holidays on the future but it has shown me how vigilent I need to be and how difficult it may always be to explain, especially whilst abroad. 
Since my return I have read loads of advise from other people with similar implants, saying that they have been told they can go through metal detectors, but I think I'll stick with avoiding them. Not only am I sure I felt a jolt, but apparently the implant may turn off (which I guess for this type of implant isn't a massive issue) but also I have heard that it could wipe all the programmes off the device, which would leave you essentially 'without' a device until you could get reprogrammed.  
Life is never going to be easy!!! 

Wednesday, 18 February 2015

Consultant gives me a call

As I did have my consultant's secretary's number, I did leave a message yesterday and this morning I got a phone call from my consultant himself! 
I explained what had happened abd said that the battery area was tender yet the implant all still works properly, and he said he wasn't too worried about it and that it would be fine for him to check things over on our follow up appointment on 4th March. I asked if I shouldn't have been stretching at the gym, and he said I should be able to do that and not to worry about doing those things in the future. 
He asked how the implant was working and I said that for everyday it works really well and that I don't feel the pain but when it is really bad pain I haven't found a program to help as this doesn't happen often enough to try lots of programs. 
He suggested that he will contact the rep to reprogram on the date I have the follow up appointment. 
So overall, my worries are relieved and again he is very easy going about what I can do, which is perhaps why I didn't really get any advise at the hospital.  

Saturday, 14 February 2015

Oh no!!! The lead has pulled off my ribs!!

Uh oh!!
I think the lead has pulled off my ribs area as now you can see a bump when I move in certain ways and can feel the wire and even move it!

The only thing I can think is that I recently returned to the gym to begin a rehabilitation back to exercise again. I was just using the stepper and walking on an incline but my personal trainer got me doing some work on the step and with 2kg weights (which is nothing compared to the 5kg I was using before the operation). 
I didn't notice that day or even for 2 days later, but I was in a lot of muscle pain around the back of the ribs, which was just from the exercise itself.
Not sure what to do about it! Surely it will secure itself back down again with new scarring?? 
I have got an unrelated doctors appointment on Tuesday so maybe I will ask about it then. 

UPDATE: Tuesday 17th February 2015
Well that was a waste of time!!!!
I explained the problem and she asked to see. I lifted up my top and showed her, I even put my finger where to wires sticking out were but she said she didn't know what she away supposed to be feeling as she doesn't know what the wires feel like. I asked her to touch gently, but press down, as then you squash the wires and won't feel them, but she didn't do that. 
She then quizzed me about what I'd had done but didn't really ask why or how it was, or even check my scars at all! 
She then palmed it off on me calling my consultant's secretary and printed off letters which I have a copy of, with out of date phone numbers due to the hospital changing sites last year. 
So I am none the wiser about what is recommended or advise for the future. Great!!!!! 

Monday, 9 February 2015

Chest scar

As you can see, one half of my scar is flat and really neat but the other half is raised and overgrown from the original incision size. I discussed this with my GP over the phone and he wants me to see a nurse tomorrow about it. 
I will update once I have been to the appointment.

Update: 13th February 2015
It was an interesting visit to see the nurse the other day. She was so bemused by the scar that she got another nurse in to look at it too. They couldn't work out why half is completely perfect and the other half raised, especially as it is completely healed at this stage. 
She agreed that it is keloid like (but can't diagnose as a nurse) and really understood just how sensitive it is! 
After a bit of googling to find out its name, she prescribed my Haelan tape. It is a thin tale, much like sellotape, but is impregnated with a steroid. She felt this might not only protect from clothes running it but also press the scar down whilst hoping to improve it with the steroid.

I've now tried it for 4 days, just during the day, and it does seem to lighten my skin temporarily which of course make its all look better. By morning the colour has returned to normal but I think the scar is slightly flatter than it was. 

I have had some redness from wearing the tape but it isn't a rash so I am continuing to use it daily.
We shall just see what happens now.

Wednesday, 21 January 2015

Reprogramming my implant

Just felt like it's time to give an update on how things are as well as to share how the reprogramming of my implant went.

In terms of the actually surgery, I am getting there now, I believe. I am gradually building up stamina and getting strength back but I am more or less able to do what I usually would do, just with a slight stiffness and uncomfortable feeling in my neck when I look sharp right, and if I bring my new to my chest or bend over far, then I can feel the battery pack pressing into me. 
The thing I am most worried about is the dizziness I am getting. I am sure it is more often and more severe than before the operation, as I get it every time I bend over or get up quickly.

I have begun training back at the gym, but my personal trainer guy won't let me do anything that means bending over or putting my head down (which seems spot on) so I've only really used the stepper, treadmill and weight machines. Not what is like to be doing ideally, but it's better than sitting about doing nothing and it meant I have begun to care about my diet again too!

Although I had been chasing the pain clinic to arrange an appointment to meet Mike from St Jude's Medical again, after Christmas and new year were over it was relatively easy. I saw him last week and after I described how the programs were pinchy and I could only used one, he had a look and agreed that they would feel like that as they were fairly strong. So at least I feel like I do know how things should feel, without feeling like I know anything at all about how this all works. 
Mike said that probably my lead is very close to my nerve, which makes me very sensitive to the stimulation, so therefore I can only cope with low frequencies. Most people have 4mhtz but I am working between 1.2 and 1.4!!!!
He set up 5 more programs that seem to work further up my neck and towards my ear and therefore aren't causing the muscle to spasm which is what the pressure feeling was. 
He did say to leave my stim off for a little bit as I was very zapped for an hour during the reprogramming. I actually suffered a headache for a day or two after the appointment, so that's something I'll have to remember from now on! 
I tried out the new programs two days later but none of them particularly felt normal enough yet to leave on for any length of time. I then found it extremely difficult to get back in the routine of turning my stim on in the morning, as I felt like it would take a while to get the setting right, so I put it off for a week. I feel bad that I left it so long, so as I haven't had much benefit from it yet, I just don't feel reliant on it. I guess these things take time and I am going to take time to figure all the out!! 

My next venture of going on holiday!!! It will be my chance to see what happens at airport security and how I cope with the implant whist away from home. I'm not particularly worried, as feel I need this time away to relax and chill in the sun to aid my recovery and well being.
It will also make sure I get over showing my scars freely to people I don't know! To be honest, I'm not as worried about that as I thought I would be. 
I'll update when I get back!

Friday, 9 January 2015

Rosehip oil trial

Whilst randomly reading information about scarring, I read that rose hip oil is a great treatment for scar tissue. 
I first tried Palmers skin oil with rosehip extract but found it a bit oily to use, as it went all over my bra and when my hair went over my chest it ended up oily, as well as the neck scar just coating my hair in oil.
So, being as my mum is a complimentary therapist, I used her about it. She says that they use it at her work a lot and she has heard good things about it being used for scars and skin. So she got me a sample and I have been using it for about a week and a half, twice daily.
I have to say that as it is a dry oil, it doesn't make my hair or clothing oily, which is great!! It feels nice to be treating the scars with something and it is very gentle to use on them.
 I feel that the scars have lightened in colour and don't look so purpley/red along the incision, as before using the rose hip oil. 
My head scar is barely noticeable and now doesn't have the lump where the staples were holding it together so much. Although it means that the loop made with the lead protrudes more and is still very itchy. This is mostly under the hair line so can't be seen in this photo.
My chest scar still has the lumpy thick part to it and I am really hoping to see a change in that at some point. 

I am definitely going to continue using the oil, if little else, to moisturise and lightly massage the scar tissue regularly but hopefully to see more rapid improvement.

Recovery is in sight

It's been a couple of weeks since my last update and I can now see that the odd feelings, pain, uncomfortableness will eventually disappear and I should not notice the incisions, battery and wires in my body at some point.
Things are much more comfortable now generally, although my stomach is still tender and wearing tights or jeans done up all day is too much. At night I often undo them or take tights off.
My neck is still a bit tight and turning fully to the right is pretty stiff. I don't force it too much as I don't want to cause any damage.
My chest incision out often pretty itchy and the muscle there still aches a bit, particularly when I stretch across my body to the left.

Overall thought I am now managing to do little bits of normal things. Although if I go too much, I do feel that my leads inflame the area surrounding it, particularly in my neck and chest and my stomach becomes more tender.
I did go to the gym just for 25 mins the other day. I only did low level exercise, just to get slowly back into doing something. I worked on a low impact program on the stepper and walked an incline on the treadmill. To be honest, that was pretty difficult and I had to rest half way through, after only 5 minutes!

My implant though still seems to be doing very little. My head pain has been getting worse and lasting for days at a time and the programs I can cope with don't appear to help. The other programs are still too pinchy for me to cope with for any length of time. 
I have been battling to try and get hold of someone at the pain clinic to get an appointment to see Mike, my rep, and finally today was told I can meet him next Tuesday. Hopefully we can set up a wider selection of frequencies so that I have a bit more choice! 
We shall see, I guess!