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!

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.

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! 

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!!

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!!!