A Spine Saga

A little history first.

When I was quite young, pre-teen certainly, I noticed my back curved in. When I was 9, I was being yelled at by my ballet teacher for "sticking my bum out" when I felt like I was standing up perfectly straight. By the time I was about 12, I was regularly watching myself "lean backwards" side-on to a mirror in the bathroom and seeing that my bum and lower back would pretty much meet (I did have a bit of chub by then but still, it worried me) I would have "flash visions" of my back just snapping in half there. By 15, one of my party tricks was to show off that I could stand against a wall with bum and shoulders touching the wall, and by all outward appearances to be standing as straight as I ever do... and then comfortably get both arms completely behind my lower back.

By 17 I was occasionally complaining of back pain, but it was "nothing all that serious" to my already developing pain tolerance, and only bothered with painkillers when pressed by my mother as to what was wrong. It was sufficiently rarely that bad, I didn't get it really looked at then.

By this point I also had chronically knotted shoulders, which I thought nothing of, blamed on my ever increasing weekly hours of fencing training, and treated mostly with heat and an occasional massage.

In my late mid/late 20s during a job which involved upwards of 4 hours driving a day 6 days a week, my neck eventually siezed up so badly I couldn't turn my head - I took a week off on medical leave and the doctors I saw then said they thought it was referred pain from my hyperlordosis, but couldn't recommend doing anything about it other than rest, heat, massage and painkillers. More of the same. Eventually it eased, I went back to work.

Through this time, I've always felt better on long journeys or during long periods of sitting if I can have something rolled up behind my back, but could *manage* without. From 28ish onwards I can remember starting to bring a pillow for any journeys over an hour or so, even if I was driving. Some trips were made without, but they were the exceptions rather than the rule.

Last April, I woke up one morning with my lower back "on fire". I was away from home, and a friend was able to hook me up with some co-codamol, but it didn't really help much. When I got home I talked to my GP - I was told my back had spasmed, to take painkillers (including an initial course of diazepam for a week) and to gently excersise to ease it out. I took the drugs. They worked, but the relief lasted barely another week after I stopped taking the diazepam, and they'd spaced me out so badly I'd been able to do little else but stare at the walls for that time. Over the year that followed, it became gradually more painful to sit for any length of time, and I started to notice that I wasn't bending the lumbar section of my back, favouring a hip-hinging motion to pick things up and so on. 2 more trips to the GP through that year eventually got me referred to a physio in February. I had sessions 3 weeks apart with the physio, nominally to deal with general stability issues surrounding my HMS diagnosis rather than specifically for my back. The length of time between sessions, and the fact that by then I was really in too much pain with my back to keep up with the entirely unrelated excersises, I wasn't expecting what happened next.

On the morning of my fourth physio appointment, I woke up in excruciating pain. It took me half an hour to get dressed, another ten minutes to put my shoes on, and was almost in tears from the catch-22 of the bus trip: my legs didn't want to hold me up to stand, but my back exploded with more pain if I tried to sit. I was late, and when I explained to the physio the state I was in, and begged her to look at my back rather than my knees that day... she threw me out. Not after a bit of poking and such, but basically she told me I needed to see a doctor TODAY, and not to come back until my back was fixed. She had mused on our first meeting that with my lower back so completely locked up it was likely a disc issue, but hadn't pressed the point then to get it looked at. I kinda wish she had.

So began a series of trips to first, the hospital out-of-hours doctor (since my GP can only schedule emergency appointments placed before 9:30am for the same day) and that followed by the GP the next day, private consultant the next week to schedule an MRI a further week later... which confirmed the diagnosis of a herniated disc. A week after those results came back I went into hospital as a day case to get nerve block injections on the left side of the disc. And I hoped that was the end of it.

After a couple of days being happy I was able to sit up again, I was utterly beside myself with relief and joy when, a week later, I even managed to put away my walking stick for an evening out to sit through a special cinema showing of Labyrinth. That was last week.

Today, I'm miserable again. On the way back from a short walk to the shops, I started to feel the pain in my thigh and hip begining to return - exactly the feeling that went away with the jab. It's not crippling yet, though the hard ball of ache and tightness in my spine never really went away (it's not what the injection was supposed to solve anyway) and is also getting worse again. 2 days out of the house in a week and you're going to tell me that's too much? That's not a fix. That's barely a bandaid. Even on my worst weeks with HMS I could manage that. To be crippled by something so small when I'm living with something so much bigger every day... I feel betrayed by my body and by my mind. I can feel a new kind of depression creeping in... one that has nothing to do with the weather, the season, or past tribulations. It has everything to do with that intense feeling of betrayal, and the boredom from being bedridden that's barely tempered by the deep worry that this may yet lead to surgery, which likely will also only be a temporary fix, followed by a lifetime of crippling back problems.

The worst part of it is, dispite having a photo, right there in black and white showing that disc totally flattened and bulging out onto my nerves, I still feel like a fraud, a wuss, a pain in the ass... like I'm somehow doing this for the attention. Because now more than ever I need to know I have people who care about me, and I am leaning SO HARD on my friends, I worry that even with a real thing they've actually heard of for a change, they will somehow still turn away, decide I don't need them, that I'm taking liberties, using them, something. It seems so ironic after my last post to say that, and perhaps with that one friend I've moved past this fear. I made the decision to be open about my problems this time. And it terrifies me every day that there will come a point where it becomes too much and everyone just.. walks... away. It's happened before.