My name is Jodie and I live in Western Australia. I am a nurse and have had a really bad run physically which has left me in the state I am currently in.
Initially I hurt my neck and shoulders at work in 2004 and had ongoing pain for 8 & 1/2 years until a pain specialist suggested a rhizotomy which miracles of miracles left me pain free and able to live a normal life for the first time in a very long time. During the time I had been injured my life had changed significantly and whilst I had learnt to cope my life had shrunk from someone that was active, fit and outgoing to me being what I now know to be a spoonie (the spoon theory). Each day I had to measure my limits and try and fit my life around what I could and couldn't do.
To his credit my partner, who is also a nurse, stuck with me through thick and thin and during this time we got married, brought a house and settled into somewhat of a routine, despite our lives being dramatically effected by my injury. My husband was left with a wife he was afraid to touch and a sex life that went from romping to barely once a quarter. things improved slowly and we learned ways to cope so that we could live as close as possible to "normal life" again. Then all of a sudden I was free to be my old self again. I was happy, felt on top of the world and like I could take on anything.
14 weeks after I recovered from the rhizotomy I suffered another injury at work, this time a lower back injury, from a simple accident that was unavoidable and had nothing to do with me or what I was doing at the time. I prolapsed 2 discs and had nerve compression to boot. My world crumbled. I knew this path and there was no way I wanted to go down it again. I was only new at my job and because of my previous injury I had been given a 6 month contract to prove I could do the job. Needless to say despite trying my best to get back to work I lost the job. And because my boss thought I was faking the insurer took 4 months and 2 conciliation sessions to approve the workers compensation claim, leaving me without treatment during this time.
This was all 2 years ago, I have had severe pain, incontinence, difficultly walking/sleeping/sitting, unable to do basic tasks like cleaning, cooking, having sex or XXXXXX, in essence being normal. In March of 2014, after 6 months of fighting with the insurance company who refused to approve the procedure because (without any medical knowledge or expertise they decided they didn't think it would work) I had a nerve stimulator implanted.
For the first 3 months the implant worked perfectly and I was completely pain free, I thought my life was back and it was miraculous, I was starting to get my life back after 14 months of lying flat on my back. And then one night, whilst giving my husband a well deserved neck massage (he was sitting between my legs on the floor while I was on the couch above him) I lent back mere millimetres and something went snap, instant excruciating pain, like I had prolapsed my back again. for the next 3 months the stimulator seemed not tow work any more and I started getting severe pain again and some rather unsettling side effects from the stimulator.
After further scans it was discovered that the lead in my back had slipped. They reprogrammed it but the side effects from the stimulator persisted and worsened. It appeared I was now suffering what the exerts call oversensitivity to hyperstimulation. Grand result of which is if I leave the stimulator on too long I get severe migraines that last for at least 48 hours after the stimulator is turned off and are not affected by any medication that is given either orally, via injection or intravenously. I also get severe twitching that can't be stopped, similar to parkinsons, restless leg or what are called myoclonic jerks which again don't stop till 48 hours after the stimulator is turned off and don't allow me to sleep or rest. I have spent months working with the specialist and the representative of the stimulator to try and find a solution to the problem.
I worked hard to recover and finally, against all odds, got to the point I could go out and get a new job (2 years after I injured myself), against all odds I found an employer who would take me on and I worked hard to get through each day. I spent days working and evenings and weekends recovering to go back to work the next week. Thinks weren't perfect but they were slowly improving.
Then disaster struck, I slipped down a stair at work and jerked my back and then, within 2 weeks slipped on a wet floor at work and severely jerked by back again. This was all just before the Christmas break. I have spent the entire Christmas break in severe pain, unable to walk or move well, and having to take heavy pain killers with very little result. I also have suffered some nerve damage as I have lost some sensation in one of my leg. I am still in the probation period of my new job and I am petrified that I am not going to be able to get back to work after the Christmas break, let alone keep the job. I can't handle the pain and can't see a way out. Feeling desperate. None of the medication techniques or CBT techniques I have learned are making any difference. I am in pain constantly and am not getting any sleep. I am desperate for help, any help, to prevent me losing it all again.
I found the spoon philosophy about 6 months ago and showed it too my husband and at the time he seemed to get some idea of what I was going through but he is at the point that he is just over it, and while he is trying to be supportive he is frustrated that I keep cancelling plans with our friends and that we can't be intimate (no sex for 2 years does wear a bit thin for both of us). He has been really supportive but I am scared he is at the end of his patience and that I am going to lose the only support mechanism I have left. We talk about it and he tells me it doesn't matter to him but when we fight (as all couples do) its the one thing he throws in my face and it completely devastates me, never mind that I XXXXXX he is missing out and he is sick of it. He always apologises but it still hurts and the injury is ruining our marriage. I have urged him to get counselling but he is resistive. I feel like I am looking down the barrel of potentially being on disability for the rest of my life, losing the man I love and our plans for a life today, especially having kids which is now completely off the table.
So how do I cope with this situation. I have lost so much and am now facing losing everything. Anyone have some suggestions on how I can cope. I live in an isolated area, My nearest family member is 1200km away by car (which I couldn't drive even though I want too) and I can't move in with them as they have a young family. The house I am in now is linked to mine and my husbands jobs. The pain is overwhelming and I am struggling to make it day to day. I haven't got enough spoons to make it to midday let alone to the end of the day. I see my specialist on the 13th of January and need to find a way to hang on till then.