Massive SPD/PGP update.

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Haven’t written a longer entry in awhile because things have been tough. I don’t know if any of you kids remember me writing about a month or so ago about how I’d had a bad relapse that hadn’t cleared when I got my period? I’m still in it. And it seems to have escalated ten thousand fold with the approach of another period.

I’ve been finding daily life more painful and restricting, and have been dealing with the ramifications of that.

One being that I spoke to the manager of this volunteer we have. She donates 2 hours of her time every week to our family, to help me take Snort and Coconut out to a local group. The manager is an awesome woman; I really like her. She came over one day to push the babies’ pushchair to the park – through snow and ice – so we could take them swinging.

Anyway, I shared with her that waaay back when, the spinal surgeon said I needed to consult with a pelvic specialist, and that referral had never happened. She suggested I get Crazy Lady (every family in Country B has a specialist nurse assigned to them for kids aged 0-5, ours is named Crazy Lady) involved. I agreed because Crazy Lady has sped up referrals in the past.

Well, weeks went by with no phone call from Crazy Lady. Then this week there was a knock on the door and she just fucking appeared. No forewarning, no professional bothering to call and make an appointment for her, oh no. She busts in during naptime with no regard for my sleeping kids.

She comes into the flat and starts demanding to know if I am depressed. ‘Are you depressed? You’ve been doing so well and I hear things are going down.’

I say, ‘Well, yes, physically things are getting pretty awful. I just needed support getting this referral, maybe speeding things up.’

She totally brushes me off. ‘Go to the doctor for that. Now, ARE YOU DEPRESSED? Be honest!’

I’m totally bemused by this and say no, I’m not depressed. Then she says she’s coming back next week for ‘a proper chat.’ No thanks. I will write a whole entry about why I’d rather pull out my toenails than talk to this woman. But that’s an aside.

So her visit upset me epically. I didn’t like someone just turning up, making assumptions, and ignoring the areas I truly do need support in. So I left a message the next day cancelling her visit this week. I also phoned up my favourite receptionist (holla! Tracy’s in da house!) and made an appointment to see my favourite doctor on a Saturday morning in a few weeks, so TMD can have the babies while I’m in the appointment.

I guess I’ll be asking for this referral. It’s to a private specialist, but I don’t think public healthcare has an equivalent, so it should still be completely free.

Yesterday TMD had to stay home from work because I couldn’t walk. At all. Even with crutches. And codeine. I was a non-stop sobfest because the pain was so intense I just couldn’t handle it.

Today is a bit better, but probably only because I’ve spent the whole day passed out in a drug induced stupor.

So, my plans. I know I never updated anyone on the whole Christmas weight loss thing, but I’d lost 33 pounds in total by Christmas. Not all in the three months, though, of course. Because I’m sane and realise 1-2 pounds per week is the ideal, though of course I’ve been losing much slower than that. I plan to continue losing weight.

I also am borrowing a Yogalates video from a friend who is hopefully posting it today (holla! Mamacrow in da house!). I know my core muscles are key to ever recovering. I need to not get all crazy and stay realistic. For me that means not going from zero to sixty. Once I have recovered from this truly terrible dip in my physical abilities – maybe this week? – and can do a bit of movement, I plan to do small amounts of regular work on my core. Another friend is posting me paper copies of all the Pilates exercises her physio gave her for SPD/PGP.

What would I do without kind people, hey?? Knowing I have people supporting me offers me a bit of cotton wool to wrap myself in as I try to continue to recover.

I also wish there was a way to go swimming regularly. Those of you who only know me as a stay at home mum may not know I was once Super Lifeguard, The Best Swimmer On The Fucking Planet! Swimming and pilates have consistently been the two exercises recommended to me by specialists. The key to swimming is getting my fucking driving license, which again will be the subject of another entry.

Core muscles are the name of the game. Mine were destroyed by twin pregnancy – my bump went out to my knees when sitting. They were then obviously cut through when I had a c section. Core muscles are what supports the spine and pelvis. I need to strengthen them before I have a hope of regaining a normal (normal for me, not for anyone else!) life.

My mom pointed out that I’ve been sitting around, mostly, and just waiting for things to suddenly heal and be better. She’s right. I have been. I have also been scared of trying and having things not work. Classic fear of failure.

I guess at this point, 17 months postpartum, I’ve got to be realistic and understand that recovery will require more active work from me. That will require me to keep strong emotionally and mentally, as well. So I may blog more about this stuff just to keep myself on an even keel.

Everything is hopelessly tangled. I think losing (more) weight is emotionally fraught for me because I’m just about at the point where I could eggshare again. And getting thinner without having another pregnancy? Would really upset me. I need to move past this. Whether we expand our family by me getting pregnant or not, nothing is possible until I am able to move again. And Snort and Coconut deserve that, TMD deserves that, I deserve that.

This weekend is going to be all about rest and healing, so that I can physically cope with next week. I’m using the ‘opportunity’ afforded me by being unable to walk to read more about spirituality, to think, to relax and refresh.

I’m also thinking a lot about what I want life to look like, and trying to figure out why I always, always, always avoid doing the big things I need to do, why things scare me. Finding my courage is sometimes easy, sometimes hard. But follow through? I lack follow through.

Any comments welcome on any aspect of this post, though be aware I’m virtually confined to bed so don’t necessarily want anything that’s going to be upsetting. So by ‘any’ comments, just this once, I mean ‘nice and uplifting comments, suggestions, commiserations.’ Hehe.

Thanks, for reading. For being.

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11 Responses to “Massive SPD/PGP update.”

  1. saralema Says:

    I followed your tweets when Crazy Lady first came over and was shocked. Who wouldn’t be at least a little depressed by the continuing pain you are experiencing the lack of help or the extremely slow response from the medical establishment?? Between your experience and Steve’s, I am left to wonder if the medical community does more than basically shrug their shoulders in cases of chronic pain/illness beyond the well known varieties.

    Have you checked out Youtube for more core muscle strengthening videos? There seems to be quite a few clips from what I searched.

    Great job on your weight loss. Future pregnancies or not, it’s good to shed the excess so you will be able to live the life you hope with TMD and the babes once you are feeling better.

    Keeping you in my thoughts and prayers.

    • existere Says:

      YouTube – what a good idea!! Am going to have a look this evening and see what I can find. Can’t believe I didn’t think of it myself, seeing as I spend so much time on there looking at Sesame Street videos.;)

      I think chronic pain and conditions that can’t be cured DO mess with medical people’s heads. Would write more but need to go lie down! Thanks for the idea about online vids, though!

  2. sara Says:

    I was in a car accident a while back, and was injured and disabled for a long time. Chronic pain is just as debilitating as the actual injuries, and is just as hard to live with. I’m really sorry you’re going through all this, and I applaud your decision to take control and begin working on your path to recovery. It is much harder to do this than it is to try and ‘live with the pain’ and you are a brave woman to stand up for yourself (and to yourself) and continue on that difficult upward path. For me, there definitely was an element of depression, and it made it hard to do the neessary work to heal. Took a long time, but I’m as healthy as I can be considering. I know you can do this; you are strong and beautiful and above all MOTIVATED by your fabulous family! Keep going chickie, I’m rooting for you! xo

  3. littlepiecesofwood Says:

    I caught some of this on twitter.. I haven’t any super duper words of inspiration or any answers.. but just wanted to send you a big hug across the internet and say hang in there.. it will get better.. and as for Crazy Lady.. well you only wanted nice and uplifting comments, so I’ll carry on berating her privately!! Stooppppid woman.. ooops, that slipped out – sorry! x

  4. Lauren Says:

    I can relate to you being scared of trying to recover and it not working… When I was still pregnant and the pelvic pain was getting worse by the day people assumed I couldn’t wait for pregnancy to be over. The truth was that I wasn’t fed up with being pregnant, because I was so scared that I’d still have pain post-partum. Ivy is now 15 days old and I’ve barely been able to move today because I walked about 10 minutes each way to have a cup of tea with some Mums yesterday.

    I don’t know why I am telling you this, I don’t think it will make you feel better, but I wanted to reach out and say that I can relate. I’m scared I won’t ever be able again.

  5. Gnome Says:

    I would highly recommend the Alexander Technique. I have been doing it for about seven years, and it is the most helpful therapy of any kind that I’ve ever done. I’m happy to discuss it further if you’d like to. More info here http://www.stat.org.uk/

  6. tia Says:

    no words of advice, but i do love you & hate that you’re in constant pain & i wish that there was something i could do to make you feel better.

  7. mamacrow Says:

    oh sweetie (((HUGS))) that totally blows goat 😦

    I did indeed post the dvd today, but in the afternoon which means it will go Monday so should be with you Tuesday. Ish. I hope! xx

  8. Jennie Says:

    I had a Crazy Lady of my own, so I can relate to that aspect. Lots and lots of well dones on the weight loss to date, you really are my inspiration! When I think of how much you’ve had to put up with, and yet you’ve *still* managed to lose weight, I can only conclude that you must be a very strong willed lady, and I hope to emulate that over the coming months! Although my paltry 15lbs doesn’t compare with your magnificent 33, but there we are!

    As to the pain, I so much wish that there was something I could do other than express the same sympathy and wishes for recovery over and over again. I just wanted you to feel as much online love and support as possible, and so I figured that my useless ongoing sympathy might count a little towards that. Oh, and also, you ROCK! (and have totally adorable kids, but you knew that!)

  9. Winnie Says:

    I don’t know how to help in any other way besides sending hugs and good thoughts to you… But I know you’re strong and strongwilled and YOU CAN DO IT! After all, you are SuperMommy to two of the cutest kids in Country B! 😀

  10. Katie B. Says:

    *hugs* I love you! You can do this.

    Fear of failure is as nothing next to fear of success.

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