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!!

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!!!!

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. 

Irritated.....

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!