At 4.20 this morning, when the pain woke me for the tenth time, I realised that I’d overdone it yesterday. In what felt like a return to the bad old days, I got up, put my heat pack in the microwave, dosed myself up with more tablets and waited for the pain to reduce from excruciatingly unbearable to excruciating.
I got to thinking, about how, although I’ve posted at length about how much progress I’ve made, I’ve not actually spoken much about what it’s taken to get to this point. This is, by no means a woe is me post, It’s merely a post to illustrate how far I’ve travelled in the past year and how my mindset is gradually changing. I’m no Pollyanna unfortunately, although I try to see the silver lining and to make the most of things, I often fail (as Mr RR would attest) but I’d like to think I’m turning into the type of person who, when life hands them lemons, makes them into lemonade.
The traversing of the rocky path started in December 2009. We were parked at the side of the road, I had severe PMT and was arguing with Mr RR about what type of Christmas tree we should get. I was turned towards him, safety belt off when a car hit us from behind. The driver was driving about 40mph, and claimed just not to have seen us. Although I was in shock, having never been in a car accident before, the pain was near enough instantaneous. I did the obligatory trip to A&E in the evening, was told it was whiplash, take these tablets, you’ll be fine in a month.
Christmas came and went, New Year’s Day the same, and a month later still the pain persisted. The movement in my neck, shoulders, back, hips and knees was also severely restricted. I ended up taking time off work, going to see my then GP, who said it was whiplash due to the accident and that I would be fine in another month or so. March came and eventually I managed to strong arm my GP into admitting that some kind of treatment was necessary, the restricted movement clearly wasn’t going to resolve itself otherwise.
I was referred to a Triage service in April and from there, to an NHS physio. The Triage service suggested that the pain could be due to nerve damage caused by the accident, but that as the movement increased, the pain would be reduced. I’d be fine to go back to work in about September, and in the worst case scenario, if there was still nerve damage, an operation to burn off the nerve endings would be possible.
I first saw the NHS physio in mid April. She was fantastic, she gave me exercises designed to increase my range of movement and was generally lovely, however she became concerned that, by August time, although my range of movement was increasing, the pain wasn’t being reduced. I asked to be referred to the Pain Management Clinic locally to see if they could assist me with dealing with the pain.
At this point I couldn’t understand how I was in as much pain as I was. With the exception of my husband, noone seemed to understand the depth of the pain and how it was affecting my life. The pain was simply unbearable for the majority of the time, the prescribed painkillers I was taking reduced the pain slightly but not significantly. Night times were the worst, I would wake every half an hour with the pain, I couldn’t move in bed and I spent a lot of time sobbing to Mr RR. If I got 3 hours sleep a night, I was incredibly lucky. I couldn’t understand how my life had got to this point. I was a relatively nice person, what had I done to deserve being in this much pain without ever having any respite?
At this point I was predominantly housebound, most days not moving very far from the sofa and when on the days when I did feel a bit better, I pushed myself so hard that I’d cause a flare up, making the pain worse and trapping me into this cyclic pattern. People made helpful comments such as “You just need to push through it”, “It’s all in your head” and, the one I love the most “You don’t know pain. You want to be in as much pain as I am.” This from someone who didn’t even take paracetomol for the pain in their shoulder joint, whereas I was in pain throughout most of my joints and despite taking in excess of 14 prescription painkillers a day, the pain was still excruciating.
At this point my mood was beginning to suffer. I’d gone from being talkative and bubbly, to not wanting to speak to anyone or to interact with the outside world. I began to wonder if the pain WAS all in my head, maybe I was imagining it, maybe others would be able to deal with it better, maybe I was just a wimp, the list of maybes were endless and with each one I sank deeper into Depression. I wondered what was the point of me living, if this was going to be it for the rest of my life? I felt that my world, so previously filled with hopes, dreams and so colourful, had turned to a non descript shade of grey and try as I could, nothing I did stopped the pain. I took no pleasure in reading or watching a good film, I didn’t want to chat to friends as it felt so unfair that their life had remained the same while mine had changed so drastically. I was 28 and had to ask my husband to help me to wash my hair, to help me dress, to put my shoes on, the list was endless. It wasn’t supposed to be like this. I was so frustrated that my life had changed in such a way and this frustration was accompanied by a great deal of guilt. I started to suffer from Anxiety which accompanied the Depression but wasn’t willing to admit that things had reached that point. In all truthfullness, I don’t think Mr RR was willing to admit it either.
This takes me to September, to what would turn out to be a turning point in my recovery to date. The NHS physio referred me to the Pain Management Clinic where I had an hour assessment with an Occupational Therapist and a Senior Physio. They diagnosed that I had Depression and offered me a place on their next Pain Management Course, starting mid September. Whilst they couldn’t wave any magic wands to magic away the pain, they could offer me techniques to enable me to manage it more successfully.The course covered every aspect of living with chronic pain, from the well meaning folk who would offer “But you LOOK well” to how to manage activity to prevent flare ups, how to successfully medicate, how to use relaxation as a brief respite from the pain and how to handle the Automatic Negative Thoughts and low mood which often go hand in hand with chronic pain. The other bonus was that it would get me out of the house once a week for three hours.
To start with the three hours were torturous. I couldn’t sit in the chair for more than 10 minutes at a time, I was constantly having to change my position due to the pain increasing, having to increase my medication dosage and to cut short the amounts of time between each dose, just to enable me to get there. I tried everything: sitting on the floor, lying on the floor,standing, walking, perching, I’d have done anything some weeks just not to have to go. I persisted though, sometimes being a stubborn devil has its own rewards and I was supported by Mr RR, who throughout this long and arduous journey has been my rock.
I’m glad that I persisted. I walked away with a folder full of useful tools to enable me to start to get my life back: stretching exercises, flare up management, relaxation, managing low mood, sleep tips, in short everything to help you to manage chronic pain. I was dubious, I must admit. I couldn’t see how doing sit to stands (where you sit on a chair and stand up) was going to help me but, towards the mid November, I decided I had nothing more to lose. My way of working wasn’t getting me anywhere, I might as well organise my folder and read it through.
I started doing the stretching exercises, starting off with just one of each exercise with no hold. I started to keep a diary, noting the relaxation methods I’d used, how many sit to stands I’d managed and within a month I’d doubled the number of sits to stands, doubled my standing and sitting tolerances and had made progress in most of the other areas, including driving. This gave me the impetus to carry on, I felt for the first time since the accident, that I’d actually achieved something.
My early Christmas present following a re-referral to The Triage department was that this could last for the rest of my life, that no drug save morphine could take away enough of the pain to enable me to live my life as I did before and that stress and anxiety worsen my condition. There is a last ditch referral to Rheumatology to see if they can help at all, but the last resort, the operation to burn off the nerve endings, has been mooted. The damage is in too many areas as my neck, shoulders, back, knees and hips have all been affected.
Three months on, I still keep a diary detailling my physio exercises, stretches, standing practice, sitting practice, relaxation used, driving times, medication, and added something to focus on; to help me for when I get back to work and also something that I enjoy. The last few days it’s been neglected somewhat but writing this has reminded me to make a concerted effort to fill it in again.
So, this is me. The last 15 months have been incredibly hard but I’m still here, plodding on trying to make progress as and where I can. I’ve learned how to relax properly, have discovered a passion for photography – a creative stream that was previously untapped, our marriage is stronger now than ever before, I appreciate my husband more than ever and I’m learning to look for the silver lining in life and to take pleasure in the smaller things.( Glee – Britney Spears tribute episode, I’m looking at you.) I’m also learning to like who I am and to be more assertive. I can’t say in all honesty that I’m glad that the accident happened, as the pain still shadows me night and day but I am glad for the lessons it’s taught me.
So, today is my day of standing still. Of reflecting on how far I’ve come and reminding myself that although the pain is worse today, it will go back to “normal” soon and then I can press forwards and make progress again.
I don’t write this for people to feel sorry or to pity me, my only hope is that one day someone who feels like I did will happen upon this blog and realise that things can get better. The rewards on offer may have to be hard won, but they’re damned worth fighting for.