UPDATE - sorry I've been away for so long!

Firstly, let me apologise about being away for so long.
Mainly Apple have stopped updating and supporting the app for this blog, so it is REALLY difficult to find a way to create new posts easily.
Also, life has got in the way (in a lovely way) and I am now pregnant and due very soon!

So.... in as simple way as possible, let me update everything that has been going on for me in my ON world.

The pain clinic were mostly unable to help me. They offered me some physiological support and created a new Pain Course that I was one of the first people to attend. It was specially for people suffering chronic pain and mental health issues related to the pain.
This was really very interesting, and was mainly based around mindfulness and 'being kind to yourself'. It was a good way to meet other people in similar situations, however of course there was nobody else there suffering from ON. I felt very "different" as they were all still under Consultant gaining treatment and support, and for me I was at the end of the line and therefore not seen regularly by anyone at all.

However, I tried to put the mindfulness in place during my daily life and it helped a little...just to calm me and allow me time to relax. I still have bouts of terrible pain that can not be lowered by anything, and I have to just ride them out.

Throughout all this time, my husband and I were trying for a baby, despite the struggles and difficulty that may add to my world, I do not want ON to stop me from trying to be a Mum. There are ways through everything, and this was something i was willing to find a way through.
Coming off contraception was awful. The hormones they give do help the pain occur less often, but I needed to brave this. The pain clinic were unable to help with this, as everything they could offer "contraindicated" against falling pregnant...ie. they would not allow certain treatments in case I was already pregnant!!

so....fast forward a looooonnnnnng time later. I am pregnant and due very soon. The hormones of being pregnant have helped massively. I literally don't think much about my ON at the moment, but am pretty sure that won't last. Still, i am enjoying it for the time being.

The only other small issue I have had, is that the lead/wire behind my ear that is looped out of the way has gained some excess scar tissue surrounding it and so now shows through the skin. My Consultant has seen this and is not wiling to do anything to correct it, in case it impacts on the quality of the leads, as one is still working perfectly. This is not to say that the programs I have set on it work well, as now isn't a good time to test it out as I am barely experiencing ON at high levels.

I am seriously wondering what life will be like as a new Mum with ON and very little medical support.
So I guess, as always, time will tell.

Finally got into the Pain Clinic!!

So, I FINALLY had my appointment with the pain clinic.

It was really useful and interesting. The doctor totally understood my issues. I never felt belittled or like I was waste anyone's time. That makes a change, to be honest. 

I knew there wasn't really anything that could be done for my ON, but needed some help for the awful scar I still have. It doesn't look any better than the last photos and it is just as painful, itchy and annoying. My GP had tried to get funding for steroid injections but was turned down because of cost. I was going to go down the private route to get it, but the pain clinic have created a plan.

He is referring my onto the clinics physios, as I mentioned I saw the community physio once, and have some exercises to do, but he said these are specialised and would understand more about what is suitable for me to do to help my shoulder and upper back pain.

He then went on to suggest a medicine/drug that I haven't tried before, duloxetine. I double checked that it doesn't cause weight gain, can't have that with my wedding so close. I have to wait for my GP to get the letter from them and then I will get it from there. It is a nerve pain drug that should help both my ON and the scar pain, as apparently that pain is neuropathic too. The incision has caused some nerve damage that is causing the pain. That's the first time that has been mentioned but it makes total sense. 

I just wish I had been referred to the pain clinic years ago.

He also suggested that after a while of that, to use a capsicum (chili) cream to rub on the scar to help the pain. It will work like a distraction. It can be used as many times as a day as you like. 

Then the plan is to see how that is going and if it isn't enough there are options of patches that are put on for half an hour at the clinic or even after that to try PENS, much like I had for ON, to help interrupt the nerve that are cause the pain. He suggested this as it won't damage the skin around the scar. An injection, such as a steroid injection, could cause more keloid scar tissue to form. I learnt such a lot is so little time.

I then had an examination. He used a piece of cotton wool. First he touched it to the inside of my wrist to show me a normal sensation. Then rubbed it across the scar, then the same area of my chest but the left hand side. I had to describe the feeling across my scar compared. It was like a rough Brillo pad had been brushed over my scar rather than a soft cottony feeling. He then did the same with a small blunt needle. The feeling over the scar was REALLY sharp and the sensation stayed there for a long time. The pain clinic nurse was the one to ask about if I could still feel the sharp feeling. She knew all about ONS which was nice to know. I felt 'at home' where people understood me.

So now it's just to get that first prescription and see how things go, I guess.

Been a long time...

I know it has now been over 2 months since I updated. I really should have sooner but there has been such a lot going on.

January was taken up by me ending my employment and career as a teacher. It was a very difficult decision but I have to admit that I cannot hold down that job any longer and to look after myself I need to find a job that is more manageable. Teaching hours are long, the job is physical and the needs of yourself go our the window when you are responsible for children. I tried everything and anything to make it double, but it just isn't. So as of the end of January, I am now unemployed.

This feels very weird. I feel guilty, but it is my own guilt. I know it is for the best and my health will hopefully have less bad days without the stress and tiredness but it is the first time ever that I have not havd a job or a plan. 

Anyhow, a couple of weeks into February I set about launching a small cake business. I have been making cakes for many years and feel that this way I might be able to control my work and when I do it. I can choose to take on an order or not. I can work when I feel well enough to. My thoughts were that if I took a job working for someone, I would again be at the mercy of a timetable and my pain doesn't work like that. It comes on strong when it wants to. Working for myself seems a good start. I at least don't feel like I don't have a plan and that I am achieving nothing. The guilt has gone, even though all I am doing is creating a social media buzz and trying to get out to people.

Recently I had a week of really bad pain. I got a little cold and this always knocks my pain up about ten notches. I had to ride it out, as I still don't have a program on my stimulator that helps me control or lower it once it has started.

So not having work hasn't really changed the frequency of the bad pain but I do feel a weight has been lifted. I can't let people down so much and I don't have a huge sense of responsibility to the children and the rest of the staff. I don't have anything to prove. The stress is dramatically less and I ave space in the brain for other things.

I really feel like myself again, but the new version.

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.