Life Changing Injury; in which I start using the Kubler-Ross ‘Stages of Grief’ Model.

I’ve finally been able to be assessed. Ten months after the start of symptoms, and nine months after beginning to use my wheelchair, I was finally assessed.

It sounds like someone was negligent, but they weren’t. It made perfect sense, they were previously unable to assess the damage to my joints because of the inflammation and the pain it caused. They could see the functional effects of the joint injury, and treated for that.

But this week, I was assessed. The woman who assessed me (a physiotherapist) was great at putting me at my ease, and at delivering the intervention she had to. I was able to trust her to try to push my limits and to explore the range of motion I now have. I even let her assess the symphasis pubis- the centre of all the pain. The results are in, kids, and it’s not pretty.

She tells me that the symphasis pubis has ‘joined up’, but that one side is an inch elevated higher than the other side. This has a knock on effect on all my other joints- the sacro-illiac joints at the back of my pelvis, both hip joints, and the lumbar joints on the spine all show damage. All the associated muscles are wasted. Pain that I experience now extends throughout my pelvic and lumbar region, through both hips and down both thighs. The pain is of different qualities, from the sharp burning pain at the symphasis pubis, to the dull ache I constantly have in the back, to the muscle fatigue I have after even a little activity, to the pain which travels around the whole area. To further complicate matters, she says I have nerve hypersensitivity. This is when the nerves have been signalling pain for so long they don’t remember to switch off. So even if I didn’t have the injury I could be left with the pain.

I can now walk short distances without crutches, in an upright position, provided my pain is managed appropriately. I think I could walk about five metres. When I am having a bad day, when I have overdone it, when my painkillers haven’t kicked in, I can’t walk without my crutches, and I walk stooped over with a waddling gait. And I reckon again, no more than a few metres. My physio. assessed this, and agrees about the limits to what I can do. To leave the house, she insists I use the wheelchair to get down the steep slope to the road, and for any trips out. She would like me to walk only short distances on even, flat ground without crutches. For times that I am sore, to use crutches, and to take them with me on trips out if I plan to get out of the wheelchair for any time. I’m to avoid carrying weight except, when necessary, my baby. I’m to transport her in the sling on stairs so that I have hands for banister and crutch.

She has told me that I can expect my final level of function after rehabilitation to be somewhere between a full-time wheelchair user and a person who can walk short distances outside without crutches. Where I end up on his scale will be determined by my motivation to engage in rehab. (good), the demands on me due to my role as parent (err, good except between 3pm and 6pm), the number of times I travel by road, jiggling my joints around (okay), the amount of healing (REM) sleep I get (surprised me, this one,) and factors which are not predictable (luck- with which I am not particularly blessed, currently).
I have been doing the exercises I was given months ago. I can now do side knee lifts (about fifteen cm, increased from three), and now do thirty reps where once five was a struggle. I can pull my knee up towards my chest (yeah, right- that’s a way off) using only my hand, I no longer need to use a tea-towel. I am walking between the living room and the kitchen without crutches as much as I can. I do my pelvic floor, and lying pelvic tilts.

She has given me a load more exercises to do, to loosen all the muscles and joints much more. I am going to do them religiously. She also gave me really useful advice about the quality of pain I can work through and the type that means I have to stop and rest. My problem is that my pain threshold is high and I am also quite driven- as a result she is more worried about me pushing to too far than not doing enough.

So since then I’ve been reflecting on what this all means, sometimes by talking, sometimes by being alone and sometimes having a little sob. I know that I have to adjust to all this information and this period of adjustment includes working through the Kubler-Ross ‘Stages of Grief’ Model (Denial-Anger-Bargaining-Grief-Acceptance). I think I’m going round it on almost a daily basis. I may be feeling the gamut of emotions, but realistically I think I’ve been pretty stuck in ‘Denial’ for most of the last five months. And I’m probably not out of it yet. I don’t think any of this has actually sunk in.

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11 Comments

  1. Damini

     /  January 25, 2011

    I hope one positive aspect out of that is that this is further evidence of DLA entitlement, and that your appeal [you *are* appealing, right?] will be successful.

    IIRC Kubler-Ross said that the stages of grief were not in themselves entirely separated, and that one may shift between stages, sometimes very quickly. That would certainly fit with my experience, both pro- and “lived”, of it.

    Glad you’re back to blogging and hope it helps you with all of this.

    Much hugs as always

    Reply
    • Thanks Damini 🙂 your kind wishes and hugs are lovely, as always.
      I’m working on a post telling the whole sorry tale of the DLA story- which I aimed to have ready for #ombh but wasn’t able to finish. It’s a tale in itself. Will Tweet you when it’s up. x

      Reply
  2. Trish

     /  January 26, 2011

    So sorry to hear the assessment wasnt particularly positive, on the up side at least u know wat to aim for and to an extent wat to expect. On the downside it is very upsetting and annoying to be told u will never have the same levels of mobility again, i know how that feels and u do go through the denial, anger etc before reluctant acceptance set in.

    U do av to b careful with overdoing it, i av a high pain threshhold as wel, its sumthng i think u develop wen the pain is alwys there and it is easy to ignore it and do too much, until the next day wen yr body lets u know.

    Its awful all this has happend esp with all the hard work u put in getting yr qualification and
    job

    Can u put in for a disabled bungalow, it wud make life easier and you must have sum priority considering yr probs and where u live. Hopfly u’l get the dla as well, can u claim esa, u shud av enuf contributions or are u stil on mat pay?

    Reply
  3. I have a pelvic-back injury causing moderately severe back pain as a result of the birth of my second child. I’ve been berating myself for taking so long in my recovery, when it took me six months of pain before I finally admitted I needed treatment.

    I wish you well in your journey and will follow your progress. Ah, that sounds so clinical. I wish I had a better way to say it.

    Reply
  4. Thanks so much, Trish and Aimalyn. It’s amazing how many of us are out there- and I’m so grateful that through the internet we can make contact and support each other!

    Strangely, Aimalyn, a Mum approached me in the wheelchair at my daughter’s school yesterday and confessed that she had the same issue after her second child. She said it took her well over six months to not need crutches any more, and now, nine years later, she still has pelvic pain and can only walk short distances. So I think we are not alone- perhaps birth-related mobility problems are all around us? I hope you can get some physio to help with your back pain. It’s tough, especially when you have kids running about, needing stuff all the time! My heart goes out to you. Keep in touch.

    Reply
  5. Hi Claire
    Was telling my friend about your injury – she was saying here in NZ, that once hormones returned to normal they would consider surgery – breaking and realigning the symphysis pubis and using external fixation to hold in place until healing had occurred? Have you not been offered something similar? Sounds like you have a brilliant physio that has helped you to understand the sources of the various pains? I’m sure you follow Bronnie adieumus blog as well – another brilliant source of information/support around chronic pain?

    Reply
  6. Hi Claire. I just came across your blog today. Thank you for sharing – it is so interesting to read your perspective. I am so sorry for pain and disability you are going through. I had pubic symphysis pain after having my children too, but it sounds like nothing compared to what you are going through. It did take a very long time to heal, but the good news is that it did continue healing for a long time. My youngest is almost 5 and I now just have occasional small pains when doing the wrong movements, which I have gotten pretty good at avoiding. My theory was that creating a miracle was bound to take a serious toll on my body. It sounds like you are doing everything you can to work on it, and that is bound to go a long way. Good luck with your recovery journey!

    Reply
  7. Thanks, Linda- it’s actually incredible how many of us there out there- I keep finding more and more people who “come out” to me about having this issue (admittedly most of them recovered a little easier), but one common denominator is that they have all had to make long term lifestyle changes, and still experience pain on occasion, years later. Thanks for reading my little blog, and please bear with me as I learn a few skills along the way!

    Reply
  8. Fiona

     /  May 15, 2011

    Hi Claire, I developed spd while having my DD at 18 and she turned 10 this feb past, so after 10 year I am still use crutches to walk any short distances outside, and I use a motorised wheelchair for long distances, I try not to use the crutches at home as I have developed very sore wrist, elbow, shoulder from my use of the crutches over the years but does not always happen as we know, I ended up falling couple of years ago due to my unbalanced body, I had the joy of cracking my tail bone which has continued to cause me pain when I sit most of all and always have to use cushions now so much so that I cant even remember when I try and sit with out a cushion or with one which part of the pain is due to spd pain or tail bone pain.

    Any way I kinda platoed at around two years after I had developed my SPd, I am sometimes I am a bit better with my mobility than at that point but alot of the time “due to me never saying no to myself” I’m worse than I was at that point due to be being like a very stubborn person / high pain threshold combined with ‘ trying ” to looking after a house well anything above waist height that’s not to heavy to lift it would make me fall /kids/ everyday life i.e. just showering even with being blessed with a wet floor shower grab rails and shower seat is just bloody exhausting and lets not talk about pain my shower is exactly 10 steps away from my bed and sometimes I have to count them down to just slide one foot in front of another to get there = body makes you pay for every physical movement you make today : 2moro sometimes I can be very lucky and its not to bad a day or 3 bed rest and other times the amount I did does not correlate with the amount of sheer recover time involved to recovery back to what we call normal, trying to keep a pain dairy at the moment but it so depressing after a few days of 10 level of pain or more which the iPhone app does not have I just cant write it for next few days, that’s as close to blogging I get lol !

    So just to let you know your so not alone and their is light at the end of the tunnel just sometimes we are on different train tracks than b4 and going different places and at different speeds than b4 with different forms of transport when we emerge, but we do finally emerge! Lots of hugs and spoons

    Reply
  9. Thanks for your post, Fiona. It is so descriptive, how you talk about counting the steps to the shower- it’s great to hear from people who have the same issues!
    I’m doing so much better than immediately after the birth, but I too have plateau-ed, I don’t know if for good. Have been trying so long, it’s hard to keep motivated with the physio even though I know how important it is.
    I’m interested to know more about the app you’re talking about- is this part of a pain management programme or is it something you’re doing yourself? I would like to learn more about managing chronic pain since I seem to be stuck with it. Although I’m not too proud to take my painkillers- don’t know where I would be without them!
    I’m so sorry that you’ve had such a long battle with the pain, I hope you’ll keep in touch and maybe we can take some comfort in knowing that we are not alone. Thanks for commenting.

    Reply
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