Posts Tagged ‘recovery’

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.

Something you *don’t* know.

February 19, 2012

I get to do daily accupressure in my vagina. Aren’t you jealous?

Walking again.

February 10, 2012

Was walking without crutches or pain meds last night! Of course, it hurt a bit and our flat is really small, but it is a 6000% improvement over last Sunday.

Don’t know how I’ll do walking more than a handful of steps at a time, and I’ll be keeping my crutches close at hand, but still. Tis awesome.

It speaks well for my jacked up joints, ligaments, muscles, and bones that I have recovered so quickly from such a serious relapse. Of course, most props to my wife. She had to take the whole week off work to look after the kids, allowing me total rest. I’m sure this made things heals a million times faster. She’s lovely.

A Zumba plea.

February 7, 2012

I’m laying here wondering what I can do. My specialist who actually understands spd has no appointments till March 26. And I’m already on the wait list for cancellations.

The hospital emergency room will not know enough to scan my symphasis pubis to see if it has separated. And even if they did, and it has, there isn’t anything they can do.

I’m pretty okay (though still in sharp pain) while laying in bed, on codeine and ibuprofen, icing my crotch. I’ve run out of arnica though.

But let’s be real, I can’t live my life with an ice pack strapped to my crotch and trapped in bed (watching awesome tv series, granted). I want to get Zumba dvds as a personal symbol that I am going to be fine. Fine. Maybe even walking just like normal next week.

(Damn these injections for wearing off. Damn me for believing I was fixed because they are so amazing. *Were* so amazing.)

Any of you buy Zumba and decide it wasn’t for you? Going to give them away anyway? I’ll give you my postal address. I am not kidding.

I just need to focus on the fact that I am going to improve, so I can stop thinking about wheelchairs and how I currently cannot physically care for my children.

Geometric proofs.

June 7, 2011

1. My grandmother loved jalepeno peppers. Like eating them by the forkful directly from the supersized jar love.

2. Coconut looks a lot like my grandma. And acts like her. There have been nervous jokes about her being my reincarnated grandma.

3. Coconut just tried her first jalepeno. I think her reaction conclusively shows she is not my grandmother.

(in other news, we took our first big kid bus ride into town. Snort went nuts at the bus station on the way home, going up to every bus, trying to get on, and sobbing uncontrollably when I wouldn’t let him. Yet the hope on his little face at every new bus pulling in!

Eventually our bus came. By ‘our bus’ I mean the bus we accidentally got on which added 50 minutes to our journey home (regular time required: 10 minutes). He sobbed when we got off. That’s a bus lover. )

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.

Again.

December 8, 2010

Just took a six minute walk at a very slow pace.

Sometimes it feels like I’m starting over again…and again….and again.

But I guess life can be like that. I’m lucky I have the chance to begin again – and maybe one of these times, it’ll be the last time I have to start from scratch.

Time to stop fucking around, methinks.

December 8, 2010

Sleeping post IS coming, but just needed to get this off my chest:

ARGH.

ARRRRRRRRRRRRRRGGGGGGGGGGHHHHHHHHHH.

Ready to hear me whine? Because if not, I’ll be honest with you: skip this post and just read the next time I write. I won’t be offended. Honest.

It’s just that things are so bad, my pain is so bad, and I’m starting to feel my emotional health taking a dip. It’s the old fear about this being ‘it,’ that there is no recovery for me.

I had a relapse about four weeks ago, and it hasn’t gotten better. Now I’m in the week before my period and…oh. I may cry.

It’s so bad, guys. So, so bad.

Last night I had to go to the bathroom before bed, and I got fucking stuck sitting up on the edge of the bed. Literally could not move without ripping pain that was making me cry out – even though I was lip biting and trying to keep quiet. Tears were rolling down my cheeks, and I felt the urge to do ‘little kid crying’ – you know, big hiccuping gulping sobs.

I couldn’t walk. Again. Was unable to have any weight on an individual leg, so resorted to crutches and shuffling my feet along the floor. When I got into the bathroom, I couldn’t bend over to pick up the toilet lid. It was literal agony, and I think I can say with a fair degree of confidence that my pain tolerance is pretty fucking high – especially after dealing with chronic pain for the last two years.

I finally got the lid up, but the act of sitting down was like I was being stabbed by rusty knives in my lower back, my hips, my spine. I couldn’t stop crying.

This morning it’s not really any better. I’m back on a full dose of codeine and this other ‘super’ anti-inflammatory. It’s not doing anything. Or maybe it is – though I can’t imagine more pain than I am currently in.

This will go away, right? Last month I was so happy when I got my period, because that usually heralds some relief, but it just stayed.

I had gotten used to my new ability/disability levels. It was my new norm. This latest foray into ever deeper pain is really testing me, because it makes my usual chronic pain look like happy little sprites eating pizza on a rainbow. I feel like I have hit bedrock and begun to tunnel into the bedrock.

I can deal with pain as long as I can carry on with my ‘new normal.’ The problem is, this extreme pain is meaning I can’t do things.

When your child looks up at you and holds out their arms, wanting you to pick them up and hold them – and you cannot do it – oh, that hurts the worst of all.

Christmas Challenge Weigh in…week four? three? five? I think four.

October 18, 2010

Monday update!

Weighed in yesterday and was very pleased to see that my weight had held steady. Considering the shit week I had, this was the best I could expect.

Last night I got back on the horse and went out for a half hour walk, so I’m going to try to make that a nightly thing again. Still feeling at the tail end of being sick, and having some pretty intense pain (but very localised and not all the time), but I think walking is really helping. This is the best month/cycle I have had since before I was pregnant in terms of pain!

I know I really need to get going, because a week of doing nothing whilst sick means I feel sort of like I’m starting all over again. But instead of giving up like I would in the past, I am carrying on. This is one time I choose persistence over the easier route.

So rock on this week, and I’ll check in with weight loss again soon!

Hope is a four letter word, too.

October 6, 2010

Typing with one hand,  so this won’t be as fluent as it would with two. Though I have acquired the skill to type quite fast with one hand (thank you, motherhood), I still can’t keep up with my thoughts.

As I type, the bottoms of my trousers are wet from the grass. Both kids are sleeping, and we’re all on – where else – the couch. The patio door is wide open (in October! Gosh, living somehwhere truly temperate is nice sometimes) and I can hear the trees swishing in the wind, our chimes, the odd car on a faraway road.

We went to storytime this morning – thank god for the volunteer. She carried the babies to me so I could change them, pushed the buggy nice and slow as I hobbled along on crutches, and got people to help carry them in so I didn’t have to. When we got home she walked in circles in the garden till both Snort & Coconut were asleep.

Why is she doing this? Why am I on crutches?

Because it’s That Time Of The Month. Halfway through my cycle, just post ovulation. The magical time when all my PGP/SPD symptoms come back in full force and hang around till the blood flies again. I know it’s shocking every month, but this month with all the walking, my symptoms in the first half of the month were essentially gone. Gone.

For the first time in, well, ever, rather than feeling hopeless and depressed at the return to semi-immobility, I just feel more determined. And hope is still there. Hope that if the first half of the month was so good, maybe the second half won’t be so bad.

I feel hope because I had help to get us out and about this morning, because we just booked a family holiday (and this morning I did period math and hopefully – fingers crossed – this holiday falls in a good part of the month), because I have been walking and losing weight. Hope because I ordered FitFlops, hope because the sun is shining and that feels like a little miracle.

But mostly, hope because of you. Because I know someone, somewhere is reading these words and having a reaction, even if they never tell me so. Hope because that makes me feel connected, and like I can do this.

I can pick myself back up every month, and I can do this.

I can, and I will.


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