Away with Pain: About Julia

My story and inspiration behind a way with pain:

From when my periods began at 11 years of age I was plagued with pain, and at 16 years of age I was diagnosed with Endometriosis following a Laparoscopy. I then underwent a series of Laparoscopies, Laser Treatments and scans combined with medications to try and keep the Endo under control. However nothing seemed to work until I was put into a ‘mock menopause’ using Synarel Nasal Spray along with HRT tablets to keep the menopausal symptoms down to a minimum. I took this medication for over five years in total during which time I underwent a series of blood tests and bone scans to check everything was ok and as it should be. The treatment gave me the freedom to work at a local hospital as a HCA and save up enough money to go travelling around the world for a year with my cousin when I was 26. This was a totally amazing experience and one which I shall treasure forever, but it wasn’t without its health difficulties! The Hospital where I worked prior to travelling were so supportive they even paid for me to do a couple of counselling courses too!

This was such a major achievement as in my teenage years, I often missed out on fun nights out with my friends, relationships were a no go, and it also impacted hugely upon my education to the point where I had to give up my degree in psychology in my final year and move back in with my parents. Shortly after this I secured a full-time job as a trainee veterinary nurse but just a couple of months in I lost it due to the amount of time I missed because of the pain.

Upon returning from my year’s adventure, I had to come off the Synarel Nasal Spray and HRT tablets because it was causing major hormonal problems. I later found a pill (Femodene) which actually worked and I have been on ever since as it does control the symptoms to an extent, although some months I do suffer from the most horrendous migraines which leave me completely incapacitated. This aside, I secured a job with a local charity in the January of 2003 and there I stayed until 9th July 2010, when clearly lightening would strike twice………….

I was so proud to finally be working fulltime and enjoying life, but whilst at work in the July of 2005 I had a car accident and from there on in I can honestly say I have never experienced a totally back pain free day. Quite soon after the accident I ended up being off work for over three months but by going to a Chiropractor, doing Pilates and having Physiotherapy at a fantastic local practice, my symptoms became manageable and I returned to work and got my very own first home!

However following a particularly bad bout of back pain in the Spring of 2009 I was referred for an MRI Scan which showed degenerative changes at L4/5 and L5/S1 with small disc protrusions at both these levels and small annular tears. I had a steroid injection into my right hip and carried on as ‘normal’ working a busy job and enjoying a good social life when time and pain allowed.

This was until May 2010 when the pain in my lower right-hand side of my back became so extreme I was left crawling around my flat on my hands and knees unable to stand up. A Physiotherapy session helped me to function once more, be it with a somewhat stiff back! At work I found I was having to sit tilted forward as my coccyx kept going numb when sat for any length of time.

By the end of June 2010 in addition to my usual pain, I became increasingly aware of some discomfort around the groin area on my right-hand side reaching into the top part of my right leg. Just over a week later the pain was considerably worse and now extended the full length of my right leg into the foot. Pins and needles were also present and driving became extremely painful, not good when a large part of your job involves just that!

From 9th July 2010 my life became a blur of hospital appointments and I was put on heavy medication to help with the pain, including: Tramadol, Co-Codamol, Ibuprofen, Diazepam, Amitriptyline and Gabapentin. My life felt as though it was spiralling completely out of control, the sheer pain and meds meant I could no longer drive, so I became totally reliant upon my recently retired parents to ferry me to my never ending stream of medical appointments. I could no longer manage living on my own so once more, my loving parents came to the rescue, took me in and became my carers. Not being able to work meant having to give up the home I’d worked so hard for, and my much loved and taken for granted independence evaporated right there and then. I felt like I was losing my identity! The impact too upon my immediate family was profound, especially as in the beginning of May 2010 my parents were nearly wiped off the face of the earth following a horrific crash on the M25 whilst travelling back from visiting family in Kent. It was a miracle they survived and even more so that they walked away with ‘only’ minor cuts and bruises. Naturally from such an awful experience they were still in a state of shock themselves, and this worry was the last thing they needed!!

After seeing a consultant I underwent the following procedures:

• 16th July 2010: MRI Scan, results of which were inconclusive.
• 26th July 2010: Facet joint injections and nerve root block – to no positive effect.
• 6th September 2010: Lumbar Epidural. Brought four hours of relief but then the pain returned with a vengeance!!
• 1st October 2010: Lower lumbar Discography which clearly showed toxic liquid had been passing from the disc out of the annular tear, and onto the nerve roots causing the pain.

Following the discography findings I had (in layman’s terms), my lower two discs removed and a spinal fusion carried out on 15th October 2010. Otherwise known as a ‘two level spinal decompression and interbody fusion.’

Finally I thought I was getting somewhere and for a short time after the major surgery I appeared to be doing well. This was confirmed by the post op X-Rays. My thoughts started to move towards the excitement of going back to work, regaining my independence and getting my life back on track. However six weeks post op I began experiencing pain once more in my back and down the right leg, at this point I had no flexibility at all in my back and this continued despite regular Physiotherapy, doing exercises in the pool, and walking everyday twice a day as part of the recovery programme. After everything I’d been through, it all seemed as though it had been in vain and the initial optimism post op was now a distant memory……just feelings of hopelessness, loneliness and despair prevailed despite a loving family, great friends and my faithful cat Milly (although some friends drifted away as time went on and no recovery insight). I felt totally useless, a complete burden on everyone and quite frankly an emotional basket case! I found night times to be the worst, as they seemed so long and I couldn’t sleep for the pain. I was lucky if I got a couple of hours sleep so it wasn’t long before the effects of sleep deprivation kicked in, and I found myself turning into a person I hardly recognised anymore, so irritable and angry.

So it was back on the Neuropathic painkillers as well as the Tramadol, Diclofenic and Paracetamol. This time Lyrica which had no positive effect for me. So it was back to the Gabapentin and Amitriptyline (now replaced with Trimipramine which I find more effective at inducing sleep and has less side effects for me). I tried other drugs during this time too but nothing seemed to really take the endless pain away. I was so tired and exhausted both physically and emotionally. Mobility wise I was just so restricted that even the simplest of tasks such as tying a shoelace or cutting my toenails was now impossible!

On 14th February 2011 I had a further nerve root block to no avail and following a further MRI Scan I was put on a ‘short sharp’ course of steroids, which yes allowed me to do more but the blasted right leg pain remained! It was during this time that my dear Nan who I shared a very close bond with passed away, I was with her when she died.

Towards the end of 2011 I was referred to a Neurologist and following yet another MRI Scan in early 2012 it was concluded that my pain was Neuropathic Pain (caused by ongoing damage to the nerves), and it was now affecting my left leg too. So despite a wonderful Consultant and Team I was referred to a Specialist in Chronic Pain. The Pain Consultant was so supportive but I was beginning to realise that I had to face facts, pain would always be a part of my life. I’d always wanted a family and being single I worried ‘who would want to be with me now like this’ and what about if things were to get even worse in the future? Everything just seemed so far out of reach. I also experienced problems claiming ESA despite overwhelming medical evidence supporting my claim, I had to go through two Tribunals (soon to be three!). My experience of claiming benefits that I should be entitled to has been a total utter nightmare and has not helped me at all with the long and slow recovery process. I have been made to feel as though I am lying about my condition and the extent of it, however from doing some research into this, I am certainly not alone in how I have been treated! The Tribunals placed another enormous pressure on me when I was already struggling to cope, especially since I have always had and maintain a strong work ethic.

I needed help and luckily help came……My Pain Specialist recommended a Pain Management Introductory day, which has led to having six much needed sessions with a Psychologist who has helped me to come to terms with things as much as possible. Alongside this, I explored other avenues including: Hypnotherapy, Yoga (including Yoga Nidra), Relaxation classes, Meditation, Gong Baths, Angelic Massage, Reiki, Oesteopathy and the Bowen Technique. These have all helped me enormously alongside the traditional drugs which I still need. I still have flare up’s and find Tramadol helps with the nerve pain flare up’s, and Diazepam is great when the back pain becomes unbearable, although I try and avoid using these drugs where possible, due to their addictive nature and side effects. I still struggle to deal with the flare up’s but I am slowly accepting that they do and will happen on a fairly regular basis, even with pacing myself. Although now when they happen I am kinder on myself and try to just roll with it, after all, it’s a flare up and it will eventually pass. I realise worrying about it will not help but potentially prolong it, although this is hard to hold on to at times! I also find it exceptionally hard to get my head around the fact, that with Chronic Pain it does ‘not necessarily mean harm’ I remind myself of this on a daily basis or whenever the pain feels different.

I have had to change my car to an automatic and can only drive short distances aided with a coccyx wedge cushion and lower back support. I cannot sit back into chairs as my coccyx and lower back feel like they are crumbling and the nerve pain increases to an unbearable level, I also need to lie down several times a day which helps ease the pain. The slightest sudden or awkward movement can trigger horrendous pain in my lower back so I have to be careful how I move. I have no idea how I am going to be from one day to the next and therefore have to take things one day at a time, sometimes even one hour at a time. Often things get cancelled, but despite all this I am slowly gaining some control back into my life, I guess I am what they call ‘work in progress.’ Looking back I can now see that I was going through my own bereavement process, I had to let go of the life I once had and focus on the life I have now; which is a new beginning. I think (and sincerely hope) that people see me as ‘Julia’ a character regaining her lust for life just at a different pace, and not just someone with a bad back. No one wants sympathy just acknowledgement and understanding. People do find it very difficult to understand and I have encountered hurtful and prejudiced comments, however I cannot blame them for these, as after all, without walking a day in my shoes, how could they?!

Julia Kelly (aged 37)