Posts Tagged ‘healing’

Hope.

April 29, 2012

My whole trip down memory lane had me clicking around my old blog, reading random entries. And I found one where my pal David asked me ten questions. One blew me away. Look:


6) If you had to choose between a life without legs and a life without children, which would it be?

I’m answering these out of order, and this one keeps catching my eye. It seems an impossible choice, and I can’t believe that I find myself leaning towards having legs.

In truth, I can’t imagine myself without legs OR without children. Except that I do know what it’s like to not have children, and I don’t know what it’s like to not have legs. I really believe disability isn’t a huge problem; this is primarily because of my first degree.

I’m not saying it isn’t limiting in some way, if you choose to see it as that, but in other ways it allows people to experience similar things in different ways.

I wonder what the limitations of this question are. For instance, can I foster children or teenagers? Or is that merely getting out on a technicality?

Essentially, I believe it’s possible to have a fulfilling life either way.

But…I guess I would choose having children over having legs. Except I WOULD totally get some bionic ones.

Children offer family, continuity, laughter, love. Legs offer a lot, but I would hope I would be adaptable and resilient enough to face life without them.

I hope, though, I will have both.

Shit. ‘Children offer family, continuity, laughter, love. Legs offer a lot, but I would hope I would be adaptable and resilient enough to face life without them.’ Have I? Have I exibited the grace and hope these words imply?

After all, while it sometimes feels I actually made the choice of having children over being able to walk normally, it wasn’t really a choice. I didn’t know it was a choice I was making before it happened. Who thinks they are going to end up with a permanent disability because they chose to get pregnant? It never entered my mind, which is why this past entry seems spooky and prophetic and….well, hopeful.

It reminds me that even if I HAD had the choice – mobility or my children – I’d choose my children. Every time.

Thank you for that, David from 2004. One again you have brightened my life. I love you.

Why does swimming give me headaches?

November 10, 2011

So. I got a swim membership to a local pool. Monday night I went swimming for the first time – and had a slight headache afterward. Woke up at 4 am with a full on migraine, including forty minutes of stomach bile vomiting. Okaaaaaaay. Didn’t think much of it, except for it being another reminder of why pregnancy might suck.

Then last night I went swimming again. After twelve minutes – TWELVE – I got a headache again. So now I’m thinking that swimming equals headache, which is totally weird as in a past life (ie before children) I was quite the swimmer and was even a qualified lifeguard for a number of years. Swimming is not headache fodder for me – or the old me, at least. If anything, swimming has magical powers. My last year in university I was the sole lifeguard in a grungy little inner city pool. I dry shaved my bikini line like every day and nothing bad ever happened. See? Magic.

So, why am I getting headaches?

The physical exertion? The new goggles? The what the fuck? Any ideas, because I’m going to keep swimming, folks.

(In semi-related news, it’s a lot easier to swim 56 laps the first time you go swimming. The second time, when your muscles are already tired from 56 Monday laps AND going swimming with your toddlers that same day? Not so easy.)

After you ride off into the sunset.

October 25, 2011

When I lost (and kept off) 60 pounds in my life before babies, I remember the weirdest part of starting a new job was that these people had never known me as fat.

I was just a thin version of me.

Today I met a bunch of new people, and the weirdest thing was them never having known me in a wheelchair or on crutches.

I was just this walking, driving version of me.

It felt odd.

Injections, take two.

September 12, 2011

As you read this, I’m in the hospital again. I’m writing on Saturday night, having just discovered I can write things and schedule them to post automatically in the future. Hopefully yesterday’s ode to past loves and dead birds posted okay.

Today – Monday – is my second batch of injections. It’s fair to say the first batch have made a significant difference in my life. The doctor said success would be a 70% reduction in pain. To me, success is that even when I’ve had pain, I have been able to walk every single day since those injections. Every day.

I’ve done more than I’ve done in awhile – though I still am not in the zone of what I would consider ‘normal’ – and I’m still waking up in the morning able to stand. Able to go on daily romps in the woods with my kids. I’ve only taken codeine a handful of times, and it virtually knocks the pain out completely.

If you’ve got a chronic pain problem – or a chronic fatigue issue, a chronic anything, actually – you’ll know about the tiring relentlessness of it. It just keeps coming. And I know I would resign myself to my ‘new normal’, but then another wave of depression or fear would hit and I’d sink lower than before. I want another baby. But I think, at this point, I want to keep getting healthy more.

When I failed my driving test – ohfuckityfuckihateyoudrivingtestisurelydo – I was upset because the first thing I’d planned to do with my saved money was join Weight Watchers. So I thought, ‘Oh, fuck you, driving test. I’ll join online instead. YOU DON’T OWN ME, LEGAL INABILITY TO DRIVE A VEHICLE.’ I’ve lost eight pounds since starting. So that’s thirty-eight pounds since baby A and baby B came out….and turned into two rocking two year olds.

I’m losing weight. I’m getting injections. I’m exercising more.

I’m doing what I can to heal physically, while still trying to heal mentally and otherwise – still realising my life is forever changed by this disability. I’m unlucky I followed a hunch to cross a road and not walk to a designated crossing. Fine. I did that.

Now I’ve got to do this.  I’ve got to do what it takes to keep walking. If any of you could send me daily reminders to do Pilates, that’d be good. These injections are a stop gap. They don’t last forever. While the pain is reduced I’ve got to get those core muscles in gear so they can start doing their job. So my ligaments can heal. So my life can keep expanding.

Have a good day, anyway. I’ll be reading this in hospital, so feel free to write me nice comments, since I’ll be all trapped lying down in bed in a room with five other women who are also trapped in bed.

Yeah.

The sun’ll come out….

August 10, 2011

….tomorrow!

Tonight is my last night with two fabulous one year olds. Tomorrow at 2 18 and 2 19 pm I have two TWO year olds.

I hope I’m home for the afternoon. I’m just packing my hospital bag for the morning. Robe, kindle (thank you, sister, for your awesome hand-me-downs!), phone charger, etc. I’m using our Onbag, so all the babywearing mama power comes with me to the hospital.

It’s been a long three years of constant pain. Yes, literally constant.

I want to walk properly again. I want to go hiking next summer. I want to go to the zoo and not need a wheelchair. I hope tomorrow, and the subsequent injections a month later, are the start of something good.

I’m kind of afraid to hope too hard, so I’m sort of blase. I welcome your hope, though.

I may make Bowen my bitch. Or vice versa.

January 29, 2011

Don’t want to jinx anything (ah, my old therapist would be rolling her eyes at the concept of jinxing), but my Bowen treatment today was awesome. Felt a change even before session had finished.

Two sessions left.

Think I am going to wean quickly from the pain med I started six days ago. Doctor told me it works by damping down nerves’ pain impulses to brain, and I think the nerve-brain connection is quite key in Bowen. I can always restart the meds if needed.

Apparently my pelvis was wacked up (my words, not hers) and is less wacked now. I’m feeling hopeful. I think it has helped a bit, but at the very least I found it deeply relaxing and enjoyed the session. Looking forward to next week!

PS. Anyone who may have information on Amitriptyline and any contraindications with Bowen therapy- or not- please do let me know. I’m interested.

Resolve.

January 22, 2011

Saw The Best Doctor In The World this morning. She’s pretty hardcore awesome. In a system where most appointments are scheduled to take 4 minutes, she spent the better part of 40 minutes with me.

She’s going to try to refer me to the private specialist, but thinks that in reality she will have to refer me to the local pain clinic. They may offer an MRI, but in reality will be trying different techniques to manage the pain.  If they feel my case is too specialist or they cannot treat me, they will be the ones to get the funding to refer me to and pay for private treatment.

The original surgeon I saw recommended denervation. Yes, it’s like what it sounds like – effectively killing off my nerves in my SI joints. (There are two joints in the back of your pelvis, called sacroiliac joints. There is one in the front, which is the symphasis pubis joint. I get pain in all three joints, and also in my hips, as a result of my condition: pelvic girdle pain.)

Apparently with my super stretchy ligaments – that will never go back to normal, sigh – it’s not just my pelvis bones that are able to wobble about and go crazy. It’s my fucking nerves. They are not being held in position, which means they are being pinched and twisted, which causes part of the pain I have.

I said that I was the sort of person who preferred more gentle, less invasive treatment – that I didn’t want to kill off my nerves or have surgery until everything else had been tried. She agreed.

I’ve been given a prescription for something that was originally developed as an anti-depressant (ah, as so many medicines have been) but now is used to treat chronic pain. It essentially stops my nerves from giving such loud pain impulses to my brain. She said this is better than codeine, as codeine only dampens down the pain. She also said this is a longterm, take it every day medication. I take one pill an evening. If it doesn’t make me too sleepy the following day and is not working, in a few weeks I can double the dose at night.

She also said this is a medication the pain clinic will have wanted me to try, so by getting started now it makes my case more ‘serious’ to the doctors I’ll see, as I’ve jumped through most hoops of conventional pain relief.

My PGP/SPD essentially is something that can never be cured, but the pain can hopefully be managed. I still do plan to do core exercises – maybe not today as I’m still recovering from this recent horrible flare of the last couple of weeks – but soon. I am also starting Bowen therapy next Saturday. I’m currently taking Arnica (homeopathic medicine) and wearing my ‘magic’ necklace.

It’s like making a quilt. I am taking good information from every sort of specialist I’ve seen, and stitching that information together to create something tailored to me. I’m trying to incorporate as much as I can, because I do not want to live like this. I do not want this to be my life.

The doctor pointed out that while I am missing ‘the fun stuff’ with my kids, they will have received more psychological good stuff – stuff that needs to happen to infants for the first two years, stuff that is more important than going out all the time. She reminded me I am giving them a good sense of self, building their self esteem, etc. She said my kids would probably be getting more of this good self-building stuff because of my disability.

That’s nice. It is. I just want to give all that good stuff to my kids, without having to be housebound. Or bedbound, as is the case of the last two weeks or so.

And on that note, I’m going to have a rest now. I’m hoping to be able to go along with TMD, Snort, and Coconut this afternoon to meet my new niece, and need to rest from going out this morning.

Sigh.

Still, I’m feeling more positive because at least I’ve got this new medicine to try. At least I’ve got Bowen therapy to try. At least I’ve got the core exercises to try.

I refuse to believe that I will have to live with chronic pain and be disabled for the rest of my life. I refuse.

Do you hear that universe? I am going to get better. Maybe not right now, maybe not this year. But I will.

Choosing to move forward.

January 19, 2011

While our volunteer was here playing with the babies this morning, I made a few phone calls. I ended up chatting with a Bowen therapist and booking three sessions. Starts not this Saturday, but the one after for three weeks.

I got a good discount for booking three, and am cautiously hopeful. Been reading about Bowen stuff, and it appears three sessions is often all it takes. Hmmm. Guess we’ll see. Doing my best to go in with an open mind and heart.

I knew I needed a therapist I connected with – just plain liked – and on the phone this lady reminded me a bit of Kleinette.  So I followed my gut and will be sure to let you guys know how it goes, especially as I know some of you have pelvic problems, too.

This lady knew what spd was and treats lots of women with pelvis problems, so I’m looking forward to meeting her.

I’m on my own with the babies this afternoon – first time since last Thursday. Yikes. But our volunteer has offered to come again tomorrow morning for an hour. I am always amazed, grateful, and humbled by the way people can pull together to help someone – me, in this case.

I want to move positively forward. Tiny steps (literally!).  I’ve been thinking when I have three consecutive months pain free I’ll consider myself ‘cured.’ I am happy that today, as hard and painful as it is, I am still able to look forward to counting the days in those three months.

Who knows, day one could happen soon.

xx

My multipronged plan of healing.

January 18, 2011

I’m going to come at this from all sides. Not like a major campaign of war, but like a gentle and persistent approach.

One -

I’ve just ordered a necklace. Nothing special to you or anyone else, a cheap, small pendant on a chain. But it is an ancient Egyptian symbol of healing and protection. Scoff if you’d like, but I see it as a tangible way I can focus on healing – a sort of daily reminder to focus my energies. And hell, if it comes with its own innate superpowers, I’ll take ‘em.

When I knew we were going to do IVF, I ordered a ‘fertility necklace’ that had some fertility related gemstones, silver fertility related charms, and a tiny piece of paper with a positive spell on it. Before I put it on I made TMD (against her cynical judgment!), hold hands with me, I said the little spell and visualized myself with a swelling belly, and then baby, and I put that necklace on. It did not come off until the day I gave birth.

Two -

We’ve not had our post today, so that means that Yogalates DVD may still come or it’ll be here tomorrow. Again, core exercises. I need to strengthen them, because mine are so weak it’s crazy. TMD points out that I often say rash and grandiose things like, ‘I will do exercise every day!’ and then if I don’t, I stop. Sort of an all or nothing kind of girl. That’s got to change.

Even if i do five minutes of these exercises two or three times a week….well, quite frankly, it’s more than I am doing now.

Three -

Someone mentioned the Bowen Technique to me. I’ve been googling and having a good old nose around – turns out that one of the world experts in SPD/PGP (a specialist physiotherapist, she actually writes all the articles on SPD for the major charities who support sufferers) recommends the Bowen Technique. My mom has just offered to pay for me to have this sort of treatment, and it turns out there are three or four practitioners about a half hour away. I’m going to write up a list of questions, ring them, and see if I vibe with any of them. Also if they work on weekends, because otherwise I won’t be able to have it.

Four -

The other non SPD/PGP related thing that may help, that does require a rash and grandiose commitment: writing. I’m going to commit to writing 500 words a day, which is nothing, really. Especially as I like writing. But it does fall by the wayside because I am so tired in the evenings – and like now, it hurts to physically sit up. So I’m going to get over this current Bad Time and then get back into it. I figure it’s a nice outside interest that is actually very inside me – and a nice reminder that I am capable of great, awesome things. (We hope.)

I feel like there was a ‘five’, but these first three things are really what are sticking out to me: belief, hard work, and help from others.

(Oh yes, there is a five. More on that later. And a six – weight loss, weight loss, weight loss. But for right now, and say it with me: belief, hard work, and help from others.)

Massive SPD/PGP update.

January 15, 2011

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.


Follow

Get every new post delivered to your Inbox.

Join 132 other followers