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.