Thursday, 9 March 2017

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.