Awful sharp pain

Today I felt the need to update as I'm experiencing such awful pain. Yesterday the back of my head was itchy and annoying me. The wire area was sharp when pressed and I had to keep rubbing it to take away the annoying feeling. Today I am getting a continuing sharp pain when I move my head or rest it against anything. It literally feels like someone is poking the back right side of me head with a needle. It's sharp but a very small area.
I can only think that this is due to being so busy and not getting much rest. I have been so busy declaring Christmas cakes, wrapping presents and shopping and all these things take their toll on my and my pain levels. It just goes to show me how much not working really has helped my avoid more of this. As I have still been sleeping well, about 10 hours a night, yet doing that little bit extra is obviously still too much!!

While I'm here, I'll update about the ill health retirement and work stuff.
I haven't received anything about the application for ill health and I sure there is still a form I need to complete and sign. Therefore I doubt the application has been sent off the Teachers Pension Scheme.
I have contacted the DWP. THAT was ridiculously difficult! I answered a million questions over the phone and eventually was told to send in the original of my doctor's note. The next day I got a text to say that I am entitled to Employment and Support Allowance! It's about £72 per week, which I can't really sneer at. I am now on half pay but with the extra it work out as just under three quarters of what I usually get per month. For now, that will do.
In terms of the dismissal meeting from work, that I was supposed to be told about mid December if the ill health application hadn't been submitted, well....I haven't heard a thing!! To be honest that is disgraceful! It's stresses me out enough worrying what is best and what will come of it, but to not stick to what they said really bothers me. I ended up emailing to say so, knowing no one will get the email until the new year, but I feel like they can't pull the wool over my eyes. I know what is going on!

So....it seems that for now I am waiting to hear about dismissal and ill health retirement. I can't move on or move forward until this gets sorted.
Yet the longer this takes the more I realise how work really does affect my pain levels and therefore what will I be capable of in my future??

Concerned is the least I can say about it all.

Ill health retirement update

This seems to be truly dragging on AND ON!!!!

I keep getting constant emails from work asking me about the medical reports, but obviously I have no control over when these are completed.

When I saw my GP on 31st October, she mentioned that she had just completed her report and it was with the Practise member of staff who would return it to Occupational Health.  She ensured me that she has mentioned my mental health issues and how my condition plays a large part in adding to my mental health issues, if I am trying to maintain my 'normal' life pattern of teaching.

I also got a referral for the Pain Clinic.....finally, as well as a referral to a clinic that has physio etc on offer to help my upper back pain. She also prescribed me steroid cream to try and ease the itchiness and pain around my chest scar. Sadly, this turned out to be dermovate, which I had as a child for eczema, but I'll give it a go.

Yet today I get ANOTHER email from work to state that they have been in contact with occupational health, who have contacted my GP and consultant to request the reports. As of yet they still haven't received them!

I really don't know what I can do. All I can do is wait. But if I keep getting bothered about it it adds to the worry and stress of the whole process. The process that I can't control!

I truly hope this all comes to an end soon. I can't continue with all this adding to my life.

I have come to conclusion, with a lot of support from friends, that the sooner it is over the better. This will avoid having to attend a meeting about dismissal from work. 

I also got a letter that I have to take to the DWP to claim incapacity benefit, as my SSP is about to come to an end. This makes me cringe. I have never had to do this. I don't get the process, it is totally alien to me. I know that I am entitled to it and that I deserve it, but it just feels so strange.

So I guess I will continue whiling the time away trying to keep my mind off all this and hopefully one day soon I will begin to know this is all coming to an end. 

Until then I feel my purpose in life is moving further and further from my reach. What am I going to be able to do? This is in someone else's hands and who knows when that choice will be made. I can't plan for my future until I know. So I will just wait.......

More reprogramming

After I had emailed the previous update, I didn't hear anything, even though I thought it was obvious that I needed more reprogramming, so I contacted my consultant's secretary for an appointment. She went round the houses, saying that i couldn't have an appointment until January, but the rep stepped in nay sorted it for the next week.

So last week I had more reprogramming.

Even though I told him that generally the pain has halved from a general 6 to a 3, I explained that the break through pain is worse and now more piercing and sharp, causing me to twitch and jump with the intensity of the pain. Also this pain is in two distinct areas on my head; low down right hand side and nearer the crown of my head. This seems to incorporate the original ON area and now the newer one that started since my most recent operation.

I expressed that I feel like I am left without much to turn to, as I have limited choices of programs that can be set and most are unusable for a day to day setting. The rep explained that with occipital stimulation, most patients only have 2 or 3 settings and that some are just for when the pain is worse and not intended to be left on whilst continuing daily life.

So we set about creating new programs based on the 10htz version that is the only one I can use.

We created a tonic version of this program, where sensations can be felt. 

Then after a few trials we found another setting that felt like it might be helpful and we made tonic (with sensations) and a burst (no sensation) of this.

So now I only have 6 programs, although program 1 and 3 are the 40htz and 20htz programs from before. 

He also discussed that maybe having the program on 24 hours a day could be overloading my occipital nerve, so turning it off at night mig be worth a try.

I guess, it's getting to the end of what I can gain from this now. Hopefully having at least another program to alternate with, so that I feel I have an alternative to go to if required, will help enough to gain control when I need it.

Update on new stim programs

When I last saw my consultant and St Jude's rep, they both asked me to update them on how it was going with trying to the new programs.

It's easiest to just copy the email I sent;

I was doing ok with the 10htz burst setting until I had a lot of added stress from work, who called a dismissal meeting because of my attendance. This is when the pain levels worsened and I couldn't control them using this program so worked my way back through the others. The tonic programs now don't seem to do much in terms of pain control in comparison, so I didn't stay on those for long. I then gave both the 40htz and the 20htz burst settings a chance by attempting to leave them on for a few days. The 40htz one feels pinchy and irritating within a day so I switched to the 20htz version. This I managed to leave on over 2 days until it became pinchy and annoying. The stabbing pain wasn't being controlled well and the numb feeling I have at the back right side of my head became more tingly and felt a higher degree of numbness and spread over a larger area.

I made the decision to switch back to the 10htz version as it seems to give me the best control that I can get from the programs I have.
It again took a few days to settle and help control some of the higher levels of constant pain, but I now have more sharp stabbing pain and tingling (like pins and needles) at the back of the head, than I had before the added stress from work.

I think maybe another reprogramming might be worth a try, although I'm not sure what you have left to work with, as I now seem to only have one setting now that I can use successfully without causing more aggravation or irritation. 

Ill health retirement

Although I have tried to make this blog about my journey with ON and not about my work, there has become a massive overlap...as my life just cannot exist the way it is and that is because ON does not mix with working, especially as a a teacher. 

I have been meaning to write all this down for a while, but it has taken a lot of effort to bring myself to begin to explain all this today.

Back in May, I was advised by my union that because of the nature of chronic pain conditions and that I cannot be cured, and that I have also exhausted every possibility with medication, surgery and work adjustments, I am highly likely to be approved ill health retirement through the Teachers Pension Scheme. With all the CBT that I underwent, I knew that I couldn't manage my job any longer, and the term I worked before my operation in June proved this to me. I was told to apply after the summer once I had recovered from the surgery.

So during the summer holidays I set to work writing my statement. It is over 2500 words!!! This is to explain my condition, what I have tried and the outcomes of these. Also to say what adjustments have been made at work and how this effects me. It was scary to read this, once I had written it, as I realised how much I risk health and safety of myself and the children just by being there. I am now at peace with the fact that I can no longer work as a teacher. I have seen the truth.

Once seeing occupational health in August, who of course fully backed my application for ill health retirement, a letter went to school to say that I am unfit to do my role and that medical reports and files were now being sought to add more evidence to my application. 

I had spoken to my GP and consultant before this to let them know that I was applying. They were both very supportive too. With all these medical experts agreeing, I know that I am making the right decision and that the final decision in the hands of the Teachers Pension, as they decide if I meet 'not working as a teacher again' OR 'not managing any gainful employment'. I, for once, am leaving this up to them. What happens will happen ...and I will work out the rest of my life after that decision has been made.

However, the union case worked who checked through my statement believed that I would be eligible for the higher tier, despite not many people meeting the requirements for this. This actually scared me, as I started to realise that I am worse than I have pretended I am, for a long time. I have been fighting teaching not even thinking about over jobs but the more I think about it logically. How can I know when I am going to feel ok to work? How can I ensure that my attendance isn't poor anymore? I can't manage sitting at a desk but yet I can't manage a physical job either! Still....I will try and worry about that when I know for sure.

So at this point I thought that, on occupational health advise, I now just await the form along with medical reports and then I compete my part of the form.

BUT......is my life ever that straight forward?

So a few weeks into the new term, with me signed off work while the application is compiled, there are some issues from my employer. I can't really go into the ins and outs, but let's just say that it is uncalled for, irrational and unsupportive. Enough to make unions VERY angry.

So I am now feeling in more of a bad place mentally and this obviously effects my pain levels. 

Time will tell what will happen but for now I have been advised to not take phone calls from work but just contact via email. This helps me cope a bit better, no one can enter my space without me choosing to look at my email.

However, this is the last thing you need, when you have made a difficult decision to end the career you have wanted to do since the age of ten. Every part of your school life was working towards getting to university, then ending up in massive debt to train for your dream job. Then working for the past 14 years doing that job....ending all this is not easy!!

Ground breaking..!!! 😳

I have just got back home after seeing my consultant and the St Judes rep at the hospital. It was a bit of a rush appointment, as I only got a phone call yesterday asking if I could attend. It exactly 3 months since the operation today, so I bet they have to have seen you as a follow up by then! 

Anyway, first, as always, I saw Mike from St Judes and after reminding him of whee I was last time I saw him and how much pain I was in, I told him what I had done with the programs and the outcome of leaving the second burst one on and he was literally jumping out of his seat with excitement!!!!!!

Apparently, the person that had spoken to at the conference just before I last saw him, did say that he had experienced 3 days for the program to help the pain levels. Also the excitement was that usually they say to use the standard burst setting which is 40htz but this was the one that I said was more aggregating. The program that has been helping me is only 10htz. This apparently is super exciting and ground breaking in that for people like me that can't cope with the sensation of the normal tonic programs, it wasn't proved yet what level would help. He would have said to use a lower level (such as turning it down to 60% of the strength it comes in at, whereas I was using at at 70-80%) but by me saying the lower frequency seems best, is exciting!!! 

Mike was so astounded by this that he rushed off to get Mr Patel to tell him what has happened and begged to speak first before I said how I was!! So it MUST be something amazing I guess.

Mr Patel was excited too and really glad I had found some relief. He joked that they were worried that I was coming in today as they didn't know what the news would be. 

Both of them asked me to contact them on the next few weeks or so to let them know how I am getting on!

Out of research purposes, Mike has set up a 20htz version of the program and wants me to retry the 40htz version keys to see how it goes, and also the 20hts version.

If the 10htz version is best, then he wants me to try it lower than I have been using it. He thinks this can help the breakthrough pains that I have been getting. Although he says that with any stimulator it will always be the case the there is some stabbing pain due to the nerve being stimulated.

Overall, he is hoping the 10htz version is the best for me, cos that will be the ground breaking find that it seems no one else has managed.

He said that only 2 of us have the prodigy stimulator for occipital neuralgia, so there hopes are on me to see what works!!!

Glad to be of service!!!

3 months post op

It's been a total roller coaster.

As always your brain forgets how bad things actually were, but I know they were bad. I was losing hope a little bit and thinking I would never see a normal day.

However I have had a couple of weeks without much bad pain, just the standard low level pain that I can manage. I still find it painful to put my hair up and I still have a numb yet painfully sensitive area on the whole right back side of my scalp.

The last few days haven't been so good. Not the severe sharp pulling pain I had but now a quick sharp stab occasionally in the middle of the right hand side of the back of my head. This goes make me wince or move but it is gone very quickly. I also have a developing sense of ache, that feels like I have been frowning continuously. It begins to hurt the front of my head and forehead area, and gets wore as the day goes on!

I am now worried to change my program setting, as i haven't even linked up to the remote since then. I was worried that I might lose the good setting I have going. I know that is crazy, as I can surely just put it back into the program and level I have it on now and essentially it will be just as good. But it did take 3 days to settle and help, so I feel like I would have that wait again. And I don't want that!

All least things are better than they were. I just couldn't see the end before and was worried about to planning anything.

Now I can see that there is hope.

Annoyingly the stimulator was the key to sorting out that hideous pain that I had since the operation but it just felt so new and different!!

Anyway, now I can move forward and know that things can be better than I hoped. And maybe when I get the confidence to play with other programs, then I might find something even better!

Who knows??!! 

Update on incisions:

My stomach scar is really good.

I have recently been on holiday so happily allowed the sun to help disguise the scar and blend it in. It can barely be seen in any photos and it doesn't cause me much trouble. Occasionally I feel that it is there when something presses into it, or I lay a certain way on my tummy. It's not pain but just a different feeling.

My head incision is ok. It's not very noticeable but it is more lumpy than the previous scar. It is raised more at the top. The circle of excess wire is far less protruding than before, so that's good. However, it's still difficult to itch that area because the wires cover a large part of the neck here.

My hair is growing fast. But is quite an annoying length now. Can't put it up and it's noticeably cut! Oh well, it will grow.

My chest though is a different story....it really aches and hurts when anything presses against. Lying on my stomach for a massage or on the beach was really sore, as it pushes my breast up into that area which seems to push the implant up too. This hurts!

Also the actual scar isn't great. There is a small part in the middle which is normal but the rest is hypertrophic. This means the scar tissue has overgrown due to too much collagen. This makes it super sensitive, which twinges and gives stabbing pain when anything brushes against it, or sometimes even just on is own. I have always rubbed rose hip oil onto it, but this hurts. I guess it is healed now but it doesn't look great.

I am going to mention this to my GP who I am seeing this afternoon. I hope there is something more than the healan tape I tried last time!