I decided that it was about time for me to share with you my life as a sufferer from chronic nerve pain. This isn’t going to be glamorous or anything to do with fashion so if that’s why your reading stop now, it’s just my story.
What do I suffer from?
I have chronic coccyx nerve pain which means that I have constant and I mean never ending pain in my coccyx (kind of the top of my bum). So I can’t sit or stand or lie on my back or lie on my front or walk for particularly long at all.
How did it happen?
Christmas of year 7 I fell over onto my coccyx or “tailbone” ice skating. I had a couple of weeks in a lot of pain and then the pain subdued to the point that I just couldn’t sit on a hard surface for too long. I assumed this was normal. Last May I went to Lourdes with some of my school on pilgrimage. We went by coach and it was 26 hours each way- not good for a child with a bum problem. And from around that time my health degenerated. Although it wasn’t the coach ride that made me ill, I think it just accelerated the process that was going to happen at some point. My physio described it as everyone’s body is like a set of scales and when they are even you are at full health. But I probably have a slight deposition to back problems (when I had my first examination the doctor thought my coccyx moved just a tad too much) so all of my life my scales have been slightly tipped. When I fell ice skating I tipped them further but as I healed I went back to almost normal. Yet when I went to Lourdes my scales started to tip again till they became more and more uneven – I was uncomfortable in lessons, and then all day at school, then sitting on the sofa at home too and then waking up in pain and going to sleep in pain- till one day they broke and I stopped being able to do anything normal, I couldn’t even dress myself. My world started to slowly crumble around me and then the deversation became more prominent, faster and faster my life fell around me until I was left with rumble that barely resembled anything I knew. I feel like when you read this you may question whether I am just a wimp and could grit my teeth and bare the pain. I did. For a long time. I thought I could deal with it and soon enough it would sort itself out. I couldn’t. I spent the first 4 1/2 days of year 11 at school sitting, standing, crouching and crying all on strong painkillers. That Saturday my back first went into spasm. My back basically went into shut down, it couldn’t deal with the pain anymore, so the muscles in my lower back went into spasm so much as to turn my back into a right angle. The doctor couldn’t believe his eyes and I was sent to hospital. On my 16th birthday I was told that I had to put my back into spasm twice a day everyday otherwise one day I’d stand up and the spasm would snap my spine. I’m now on nerve blockers that mean that this isn’t necessary anymore. But it is still what happens if I do too much. So I have to push myself more everyday just not over my absolute limit. That’s how I’ll improve (along with a lot of medical procedures that I won’t go into).
What has it meant?
Obviously all this means that I haven’t been at school for over a year now. When you’re not at school, not only do you miss so many wonderful social and educational opportunities, you feel invisible, sort of out of sight out of mind. Luckily I had my family and two wonderful friends called Will and Loz to fill me in on all of the school gossip. But not all my friends were as good and it got to the heart-breaking point where I had to tell my girlfriends that I wanted to see them more, I was really lonely. This one conversation, which everyone around me had being telling me to do for months, both made and destroyed friendships I held very close to me in one sweep. My friends Emily, Ruby and Abi all apologised and I am happy to say we are closer than ever. But my other friend, who will remain nameless, hasn’t spoken to me since- apart from awkward pleasenatries when we have bumped into each other. This still kills me I thought that my life had changed enough but no, there was one more important part of my life that was taken away from me. There are days when I feel like texting her and apologising and then I remember, I need not say sorry for my actions. I told her I wanted to see her more how could that have been a bad thing? If there’s one thing I’ve learnt is that when times get tough some people surprise you and some really surprise you.
But it’s not all physical. I have become petrified of people as, as my skin is also so sensitive now, if someone only brushes past me it causes me pain. Consequently going out has become scary especially by myself. That is what my occupational therapist helps me with. I have to try to go out by myself for tiny amounts, increasing this time by equally tiny increments when I feel comfortable to do so. However even then I hate it if I ever see someone I know especially people from school whilst I’m out because I assume that they must question why I’m able to be out by myself yet not be at school. They simply don’t understand my recovery and that upsets me.
What not to say to a seriously ill person-
I feel like this has been a very self-absorbed post so I thought that I would throw in this great (and kind of funny) video of examples of what people say to ill people:
But it doesn’t include one of my favourites:
‘ I know exactly how you feel’
‘Really you do that’s amazing that you’ve been through the same things as me and I never noticed. It’s so great because it’s really lonely having no one know exactly what I going through. Wow.’
The Guardian has a really good article about 10 things not to say to someone when they’re ill too.
How am I dealing with it?
At the moment I am spending my days tackling A levels at home with tutors from the hospital, being as sociable one can be from one’s living room, writing this blog which helps so much and fighting my body. I will not let it ruin me. Don’t let anything however big or small ruin you.