Posts Tagged ‘disability’

Invisibility.

May 25, 2013

The hard thing about being around close friends/family who were not around during my pregnancy is that they only know the old me. Someone healthy, without pain, with no mobility problems. My disability is mostly invisible. I don’t need a wheelchair anymore, and I often do not use crutches. The only things that are easy to see are that I am exhausted and not as active as I used to be.

To someone uninformed, I guess I could look lazy.

But when I have explained the situation, that I can’t lift heavy things, I have to stay still if I can’t walk well, etc…..well, if I’ve explained and you keep calling me lazy, then I suppose that’s the part where I should tell you to fuck off. Or ignore you.

Instead I am slowly being driven crazy, and very hurt that someone I love chooses to only see the worst in me, rather than the difference in me. I’m not the person I once was. I have to take care. Even on a good day, even if I’m walking for miles after taking my meds, I have to always watch myself. It’s very easy to do too much, or to take one misstep and reinjure myself. To prevent a total inability to walk, I have to take it easy.

Right now I need to readjust myself. I can’t force someone to not think I’m lazy, but I can try to use this as an opportunity to regulate my emotions around the issue.

I guess.

I know a rational conversation about it is what is needed, but I am close to snapping and saying very hurtful things I don’t want to say. So I keep my mouth shut. I love these people who think I am making my wife do everything, who think I am an awful, lazy person. I keep my mouth reined in because most of the time, it’s good. We have fun.

But I am feeling very strained, and last night I was very scared about my mobility. This disability is never going away. Neither is the related exhaustion and decreased physical ability. I’m pretty okay with this, trying to accept it and work with it. Most of the time I succeed. Now I just need to realise that I don’t need to be so hurt by this. Does it bother me that someone thinks I prefer sitting on my ass to helping out, even though I physically have no choice? Of course. But I guess there is no point getting so upset about it when I know the truth, when TMD knows the truth, when the way we do things makes sense for us even when other people think she does more than me. And of course she does, but again, that’s not always down to choice.

SPD is a real, true son of a bitch.

February 22, 2013

My symphysis pubis pain came back this morning out of nowhere. It is extremely painful to walk, even with crutches.

I hobbled back to bed and ate Cheerios while laying on my stomach, as I need food before I take hardcore pain relief, and I couldn’t sit up. Imagine my joy post Cheerios when I realised I was stuck. Like a beached fucking whale. I literally could not roll from my stomach to my side/back.

Now TMD is all trying to figure out how she can take the day off. She has no annual leave left because it is all being used for this adoption shit. Her mum won’t come here to look after the children as ‘they’ll just keep pestering me anyway if I am in the house.’ I’ve never heard such a lame excuse in my life.

I’m hurting so badly, inside and out.

And the most awful thing is poor Coconut. She was due for gymnastics today. Her confidence and joy in the gym is finally back in full force after her broken wrist/arm, and she’s asked every day this week to go there. She spends most of her time upside down in handstands, and often says, ‘Welcome to the amaaaaaaaazing Coconut!’ I guess TMD is going to have to take the day off, as I can’t move even with the ruddy crutches. Hopefully she can take both kids to the gym.

If I’d been like this last night we could have action planned and just had loads of fruits and snacks the kids could serve themselves from today. We do have loads of workbooks, YouTube, toys, etc but it is still probably physically beyond me to look after them.

But no, I’m the mother who scared her little boy. He came in this morning to ask what was wrong, if I was okay, and it was when I tried to roll over to talk to him that I involuntarily yelped/screamed. He was so scared and backed away. I called out, ‘Honey, I’m sorry, Mama is just hurt. You didn’t do anything,’ but he was already shutting the door behind him.

I can’t stop crying. Fuck this pain.

I could really use some cheering up.

January 21, 2013

Well, for the .02% of you who missed my posts about symphysis pubis dysfunction, this one’s for you.

Two Saturdays ago I went for a Bowen treatment. My new therapist is so good, and I’ve been mostly cured for so long that we both thought it might be a good idea to have an appointment every two or three months as a maintenance thing, rather than waiting till things were at crisis point before going in. So I went. And it totally jacked me up.

I went back Saturday for a free treatment to try to fix things. It was helping, right till the end when I got two monstrous and surprising bolts of pain in my symphysis pubis. It was scary, but I didn’t think too much more about it. I was fine yesterday and today….right until I had some twinges in the joint. Zoom forward literally only two minutes and I was unable to walk.

So here we are again, unable to walk even with crutches, fully doped up. My Bowen lady is coming for a home visit on Wednesday. I am fed up and terrified and hurting. And surprised. It’s been so long since I’ve had this pain.

My period is due soon- today, really, though the ivf has messed me up so badly it might not come for another week or so. While my period hasn’t affected me much in the last five or six months, I am hoping that its arrival will help ease up this pain.

And, also, how am I supposed to watch the kids tomorrow? It’s all fine saying I can stay on the couch all day until you remember pesky little details like the fact they need to eat, and we are missing a kick ass birthday party. Fingers crossed I’ll feel more able in the morning.
So. That’s it.

Tearfully yours,
Me

14 st 5. 41 pounds lost! And musings on disappearing disability.

November 25, 2012

Two pounds lost this week, though if I’m honest this has been the hardest week so far to control my eating. I’m falling back into my chocolate-salt-chocolate love affair, albeit with much smaller portions. But it is a bad slope, a hard to control slope, and one better avoided. I am sure it’s not a coincidence that I got my first headache yesterday since this new determination of weight loss (now many weeks have I been doing this? Someone please tell me. Maybe four?).

Tomorrow we go away on holiday. This will be tricky. When I was in weight watchers before I remember the leader saying we had three choices on holiday: still lose weight, relax a little and aim to maintain weight, or go fucking crazy because you are on holiday and just lose the weight when you get home. He said all three were valid choices. I think I will aim for number two.

I am still strongly in the mindset of getting this weight off. Interestingly, my knees have started to hurt. Bowen therapy is doing such amazing wonders for my pelvis (this new lady I have is like a miracle worker) that I think my body is starting to allow me to feel other pain that the hardcore pelvis pain has drowned out. I remember how good it felt to be at a good weight. I remember the total absence of hip and knee pain. I remember how good it was to walk into any shop and be able to find something cute, in my size, in minutes.

And, damnit, I remember wearing overalls/dungarees. Over here no one wears them, except perhaps butch lesbians?, but I wore them. And I miss them! Not sure I could wear them in public again, but oh…..I want to return to dungaree living.

I remember it all and I want that again. The freedom of movement, the comfort of clothes, the lack of pain. I was emailing, uh, Lady, and said to her that I still can’t believe I’m not in that wheelchair. In my mind, I remember the total emotional pain and complete inability to walk. It lingers. Yet I’m still surprised to see a picture of me in a wheelchair almost a year after they were born. In fact, the last time I used a wheelchair was only this past March.

I still have physical pain, still have days where walking is tough and scary, but I also get glimpses of my old life. My life pre disability: the particular way I used to cross my legs, ankle to knee, when I sat. Wearing a crossbody bag. I do these little things again, mostly without noticing or thinking about it. And it makes me wonder about a third life, a post disability life. Is that possible? Can it be possible?

I’ll always have the arthritis from the SPD. I’ll always need to return to Bowen therapy to help maintain my careful, still very new, balance. I’ll always be getting older, one day at a time, with bad genes that tend toward knee replacements and lower back pain.

But. But.

But.

On the pendulum of pain, life, joy….is it possible to swing ever closer to the side of my old physical capabilities, away from the extremes of not walking and wheelchairs? For the first time in years, a small part of me really believes the answer is yes.

Effity eff eff

August 9, 2012

Following the jinxed post of how great my pelvis is, I feel compelled to share that for the first time in months, I am completely unable to walk. Every day since I got kicked (!) in my sacral iliac joint, it’s felt worse and worse…and then suddenly this afternoon, I can’t walk.

It’s nice. I just used crutches, lots of drugs, and my wife to get to the toilet and I couldn’t help but scream a few times.

Right now I’m trying hard to remember that it will not always be like this.

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.

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.

And the beat goes on.

August 5, 2010

I’m getting closer and closer to being a ‘real mom.’ I don’t mean to discredit the mom I am now. Being disabled does not make me less of a mother, but it sometimes feels like I am able to offer Snort and Coconut less then they deserve. Not on the love side of things, but on the ‘there’s a whole wide world out there’ front.  I also think I will feel happier if I get out with them every now and then, and that’ll certainly make me a better parent.

Enough with the preamble.

Snort woke up from his nap this morning, and Coco’s not taking one, so I thought I’d take them for a little walksie. In the back of my mind was the 0-5 playgroup around the corner, but I decided to just walk down the street and up the hill to see how far I could get. I’ve got a friend with newborn twins up that road and was curious to see if I could make it to her house. I couldn’t, but turned around and saw the path leading to the place I thought hosted the playgroup.

I thought, ‘What the hell’ and took off down the path. I ended up at the backside of what appeared to be a deserted building, but saw a lot of cars in the parking lot so went round to the main entrance. A little sign was up reminding people that this group was for kids 5 and under….so I knew I had the place.

I went one step braver and decided to go inside to see if they had a leaflet with a schedule on or something. I managed to yank the buggy through the first door without scraping off too much paint (shh!) but could not get the double buggy through the second door, and also couldn’t figure out how to open the adjacent door. At that point I decided to give up – and as I turned around to leave a worker ran at me with a santa claus’ elf smile and asked if I needed help.

I got to chatting with her and found out their schedule – and she also mentioned a baby rhyme time I would need to get the bus for….and that they would come to my house, help me get Snort and Coconut on the bus and to the place, and then back home. WTF. Awesome, no?

I also got a kick ass goody bag (what it’s all about) featuring a keychain, magnet, pen, leaflets, the awesome bag itself. GIRL. I felt like a celebrity. Back stage. I was high on life, motherfucker.

But of course this means that once a fortnight on Thursday mornings I am going to go along with the babies to this place. It’s during a nap that I think might be able to be dropped once in awhile with no dire consequences. Coconut was so pleased to be there; she was flirting with the two workers, smiling, waving at them, chatting. Snort was happily just kicking his legs.

The big room looked to be half a harder floor filled with those cars toddlers can ride in, and half soft carpet filled with playgyms and stuff for babies. I’m pretty excited. Just to be able to get out of the house of my own volition, with nobody’s help, and get to a playgroup is like some sort of fucking miracle.

There was also a fierce looking squeezy toy shark in the freebie bag. I’ve named him Sharky the Fierce Shark (you see what I did there?) and may adopt him as some sort of ornament for the buggy.

Because I can do it.

I may not be able to do the things other moms take for granted, particularly those who are able bodied and only have one baby, but I can do this. Considering I was in a wheelchair full time about ten months ago, this is pretty fucking good, you know?

Broken.

March 6, 2010

I miss my children with a fierce pain today. I stood in the kitchen, hunched over the crutches, the reality of my situation a physical pain – and not just the body side of it, but the parenting side. It’s Saturday. I want to cook for my children, I want to play, I want to go for a walk.

Instead I’ve just got back from treatment. The pain is such that I am wearing a support belt to keep my ligaments from stretching, my bones from rotating and shearing. I am walking uncertainly, crutches barely reining in my wobbles.

I sob in the kitchen. It is soundless, my face frozen. A tear falls into the refried beans. I lean against the refrigerator, TMD comes in and holds me, tries to keep me from my growing hurt and grief and pain.

I wipe my face before I go back into the lounge, put a smile on my face. My children look at me with expectant faces, joy lighting their eyes. I hobble past them, one shaky, jarring, tortuous step at a time, and the tears start again. I turn my face away and move into the hall, my mouth opening again, freezing, water pouring down my cheeks.

After treatment they went into the library, the family… minus me. I walked about ten steps before the pain was so bad TMD gently suggested I returned to the car. I grabbed the keys with no comment. She walked into real life with them, to books, to people. I turned to head back to the car, and the pain was so sudden and deep and ripping a cry came out of my throat and I wasn’t even embarassed about it. I struggled back to the car, but the pain fogged my mind and I couldn’t remember where we’d parked and I stood in the middle of all those cars, forcing a perplexed, fake smile on my face when all I wanted to do was sink down and sob.

It all feels unfair today.

My children are alive and upright and happy. They eat broccoli and chatter and wave their toys around. TMD bakes and plays with them.

I am on the bed, alone, aching, wishing things were somehow different. Everyone and everything in my life is perfect, except for me.

I am broken.

SPD bringing me down.

January 16, 2010

On Wednesday I cracked up a little. Okay, a lot.

You see, everytime someone is supposed to come over and can’t make it for whatever reason, I find myself losing my shit, utterly and completely. You know my friend Aussie? Well, she lives in the city just south of us, where we used to live for years and years. We’re just north of that city now, and she lives in the very tippy tails of the south end, so she’s about an hour and a half drive away from us. (sigh, sob, etc)

We made plans for her to start coming up every Wednesday – until, of course, I have healed enough to actually leave the house. This past Wednesday we woke up, snow was everywhere, and I was like, ‘Fuuuuuuuuuuuuuuck.’ So she was snowed in, yet TMD still left for work. (Though I went a little bit Rage Machine on her, bless her.)

I was so crazy that TMD took Thursday off so we could get out of the house. I never ever leave the house, you see. Someone asked in a comment what SPD stood for – it’s Symphasis Pubis Dysfunction. Basically, because of pregnancy, my pelvis swings in the wind….or even a slight breeze. Your pelvis is like a ring of bones connected at the front and back by little ligaments. One joint is located under your pubic hair (sorry, no way to say it and be graceful), the other on your back. The left side of my pelvis is stable, but the right side offers no resistance and moves freely. Your pelvis is not designed to move, so that’s why it hurts like a little bitch. There is no cure, but time usually gives your ligaments time to heal and things get back to normal. Usually.

We ended up going to a local mall-ish place and out to lunch.  We had to use the pushchair because I can’t walk very far with a baby on me, and TMD doesn’t wear both of them. While I felt down about this, the upside of pushchairs is that you’ve always got a place to put all your shit, and you can have a lunch while babies snooze next to you – so no worries about dropping hot food on them.

I did bring slings, so I got to wear Snortie in a ringsling and take him to the changing room to sort out his nappy. I felt like a real live parent, out in public with my son and changing his diaper. This was so exciting.

This little outing was like my life had been opened up again. I had such fun doing, well, nothing. Coming home I suddenly felt very blue and said, ‘What if I don’t get better? I’ve always thought I would, so it makes things manageable. I can say, you know, next summer we’ll go hiking with them.’ TMD sighed.

If I don’t heal, my life will be very circumvented. I can’t think about being permanently disabled, because it makes me feel inexpressibly sad. Yes, I’ve been ‘broken’ for about a year now (what with getting run over, and then the SPD!). But I have always thought of this in terms of a temporary illness or disability – one that will take time to get better, sure, but that I will recover from.

Now I find myself doubting, and it’s scary as hell. I can’t imagine a life where I can’t walk more than five minutes at a time. Where I can’t go out with my kids, where I can’t work again (not that I want to right now, but, you know!), where we have to carefully consider and plan every outing so that the minimum of movement is required. Where I have to pick restaurants based on the type of chairs they have, for fuck’s sake.

What if this doesn’t get better?


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