Can't take much more!!

I literally am at the end of my patience! I can't cope with the endless waiting, alongside the lack of help for my ON as well as this new pain around my battery site. 

This new pain has been much worse the last 3 days, and randomly causes sharp, stabbing pain lower down in my abdomen and sometimes is tender to touch. If clothes brush over this area it feels 'odd'. I can't explain the feeling properly but it just feels different, more sensitive I guess.

I don't know how to manage all this!!

I have also developed a hacking cough and this is causing my stomach muscles to work a lot and much more often than usual, this definitely causes some of the battery site pain, as I can feel it when I've been coughing. 

This, again, doesn't help.

I feel lost. Like it's all hopeless. I'm waiting patiently but it's going on too long. Even when I finally get to see my consultant next week, I undoubtably will have another wait, for who knows how long! I am going to have to be truly honest about what I feel and what I need. 

An answer would I be a start. And a date of when things can be done!

Here's a photo update of my incision sites and tender battery and wire area.

The wire can clearly be seen as a loop at the base of my ribs. This protrudes more if I twist the top half of my body to the right, whilst the bottom leans left.

This photo clearly shows my abdominal muscles are alongside the battery area, as the battery area is very flat and the rounded dip is the muscle that pushes on it. I am also sure that when I sit down the battery is pushed over my hip bone and the sticks out. I can feel lumpy tissue thy has grown into the battery at this point and it is uncomfortable. 

Here is the awful and still tender scar on my chest. It is very red and lumpy and itches and often has a 'spiky' tingly feeling if something brushes on it.

Here you can see the looped extra wire in my neck. This also itches still and is very annoying and in the way. It's very difficult to scratch because of the amount it sticks out.

Here's another view. You can see the very neat scar here but the loop of wire is still clearly visible.

Trying to hold on!

So the same old things continue.

I think the pain I am experiencing in my abdomen is happening more often, yet is very sporadic. I can't make it hurt but it seems to happen most days. Sometimes the stunning pain has literally taken my breath away and often shocks me. Atother  times it constantly feels uncomfortable, almost like a minor stitch feels. 

I am pretty sure it is related my build up of muscle. If it is, it's the transversus abdominus muscle, which is more or less the love handle muscle that meets the six pack area of the central abdominal area. I  can feel that this muscle is very strong and can push behind the battery easily. If I feel the opposite sides muscle, it is used constantly for walking, moving, bending...everything! Therefore it makes sense that is happens so often and also matches with the strength I have gained. I believe that if the battery hadn't moved back in February, then maybe this wouldn't have happened, as I bet that it is in the slightly wrong place.

My head pain has been awful for the past couple of weeks. Everyday has been higher pain levels and I wake up knowing that the pain is there, when mostly I can wake and not realise until I am up and on my feet.

I am using my stim programs a lot, despite the fact that they aren't helping much. I still believe that if I use it when the pain is unbearable (when I don't know what to do with myself) then I am distracted enough for it to calm to a more manageable pain level, although this is still high.

My anxiety and stress levels are still pretty high. I am always on the moderate to severe level on the questionnaire. I believe it is very much work related that has just impacted on my everyday life too. 

To add to this stress, I had an email last Thursday from my Head to say that my role would now change to PPA cover. This was only following an email to say about the new pain I was experiencing and that I was going to stay off work until I saw my consultant at the end of the month. In total, I would be off for 8 weeks! I wasn't consulted about this at all and it turns out that people, including the children and parents, found out before even I did. And it wasn't made clear that this change was for the rest of the academic year, meaning I won't get my class back! Ever!! 

I am obviously devastated about this, even though it may seem this is the best thing for the class. It would have helped to be told personally, even if I couldn't have changed the decision. 

I feel like I am being pushed out of my job! This, of course, is a massive stress to add to how I already felt.

The issues seem overwhelming.

I am now attending a 6 week course on managing long term health conditions the wellbeing services thy are supporting me with my mental health issues. This may help me see things in a different way. I would like to think that I will be able to se work as 'work' not a reflection of me, my intelligence, my achievement, my life or who I am!

I need to find a way to manage my feeling about all of this. It has made me an angry person! A person who sees the worst constantly and is in a constant battle.

My health can't change if I don't make a change. I don't know quite what that is but I've got to do something.

Currently I can't think of that plan until i know the plan to help my ON and added issues from the surgery a year ago. I see my consultant on 27th January, so 8 guess my fate is awaiting that response.

One supportive thing that I have managed to track down in my GP. Although she can't help with my new issues and states that honestly but empathetically. She always understands my problems and listens to them. She cares. And I know that whatever i need from her, that is in her control, I will get and I appreciate that massively.

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 gym....it 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!!??

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???!!! 

Update:

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!

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!!

UPDATE:

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. 

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.

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!!