Monday, 24 October 2011

Monday, later.

Sorry for the tears guys, but this is what it is like. I pay a hefty price for even getting out of the house. Not that i begrudge doing it, i know how important it is for us all to be out of the house in the fresh air and it really did the children good to be able to run about and ride their bikes and scooters properly.

Taking the nasty medicine now, hoping for a doze. 

Half term vlog week.
Monday (am).

Sunday, 23 October 2011

Sundays - pills and worries.

Sunday is pill day, the day my tablet organiser has to be refilled. I hate even having a tablet organiser, but i found that having to get all the various pills out four times a day was a real hassle and i'd often forget to do it. That is a Not Good Thing To Do. Pain likes to sneak in and bite you when you don't take the pills.

That right there is a lot of pills. Especially for someone who uses medication as a last resort. If i had a headache? I'd have a glass of water, try to lay down for a while. I'd only take a paracetamol if no other method was successful. 

These are a last resort though. I cannot move at all for pain unless i take these, i get nauseas and vomit, i get dizzy and faint from the pain. Sometimes it gets that bad even with the pain relief because I've done too much. Still, I take the minimum amount i can cope with. It leaves me an option for when the pain is worse, before resorting to calling out the Big Gun.

Morphine. Or to be more precise, Oramorph, which i think is more dilute than morphine itself. Either way, it certainly isn't jelly beans (and tastes like liquid evil).

A lot of people have joked about the pain relief i take. Well meant, i am sure, but still somehow it makes me feel they aren't taking my pain seriously; "You must be floating along all day on all that!", "Damn, if you ever have any to spare i'd buy it off you (wink wink)"*.
 If you are taking pain relief and it is getting you stoned, it is stronger, or a higher dose than you need. Though my pain killers can sometimes make me drowsy when they initially start to work, they have never made me 'high'. 

All this does worry me though. I should have recovered by now. Why isn't my pain lessening, why hasn't my mobility improved? I certainly want to be better, i try to push myself to see if i can do things yet, but invariably end up hurting myself because nothing has changed, nothing has improved.
A doctor i had never met recently decided i was ok to start physio (once i have seen the pain team to try and do something to control my pain). He told the OT that i *should* be fine by now and that there should be no movement in my pelvis any more.

I would like that doctor to experience my day. Even just a morning when i have laid just a little too far on my side. Because when i do that, the bones at the front of my pelvis overlap (so much for no movement, right?). They overlap and then at some point, they UN-overlap. This is so painful it leaves me in tears, and you can actually hear it when it happens. A rather stomach turning 'CRACK'. 

I am going somewhere with all this. 

This week i got my Atos form. I still haven't been able to even read it. 
I will read it, and fill it in, it has to be done. But the whole thing fills me with dread, i know i will have to be 'assessed' by a stranger who will judge me, even though he or she will know nothing about me or my situation. My own doctor wrote on my sick note "back pain". I think it's a little more involved than that, but will Atos understand that? Will they see the struggle that is my daily existence? Or will they just judge me to be a scrounger, afraid of work?

*I have never, and would never sell on (or give away) any medication prescribed to me.

Friday, 21 October 2011

Fun at the Fair.

So, yesterday we went to the Fair on our village green. Myself, all five of my children, my friend K and her two children.

It was the first time i had been out in the village in my wheelchair and i was so self conscious as to actually feel nauseas. You see, since the SPD kicked in at week 12 of Johns pregnancy (18 months ago), i have rarely been able to leave the house. There have been a few hospital appointments, some trips to the library while we had the motability car, some food shopping trips, but all of these things were in the nearest town or further away.
 And in all the time of me being mostly housebound i can count on one hand the visits made to me by 'friends' (other than K and C). So, understandably, i feel a bit awkward going out around here.

On top of that, I'm in a wheelchair. It draws attention and i really don't like it.

So, back to the fair.
The children had a great time, we were cold, overexcited and half deafened by the noise. Just like a fair should be really. Tommy spent most of the time with his (girl)friend and her Mum, trying on some pre-teen mock independence. Nathan, Ellie and Lottie had a fantastic time, going on any ride that would allow them on, as many times as i'd let them go. John was bemused and very patient with our frivolous activity, only wanting freedom from the pushchair just before we left.

It was the first night time excursion in my chair and the green was quite dark, not to mention criss-crossed with cables and such. I pushed myself about 90% of the evening so I'm pretty impressed with myself - i still don't have any gloves for wearing in the chair (mental block i think, buying accessories to use with it is like accepting it's here and i have to use it, you know?) and the wheel rails got pretty damned cold.
 Candy floss was consumed by all, i love those sticky grins when i (very rarely) let the children have junk and i think it completed the experience. By the time we left we are all pretty frozen (except John who was rather layered up) so we bought fresh chips to eat, just perfect.

There were a few uncomfortable moments, bumping in to (or being pointedly ignored by) people i'd rather have not seen (gossips, friends of Ex Husband) and i have paid heavily today for the exertion - my pelvis crossed again last night and the pain of it uncrossing had me openly weeping this morning, and in turn it has set off my back again - but it was worth it to be out, to see the looks of delight on the children's faces, and the triumphant glee on Lottie's face as she scaled the highest inflatable slide and threw herself down it.

I'm only sorry i forgot to charge my phone and the battery was too low to let me take any pictures.

So, a little catch up for any new readers.

I am Becki, i have five amazing children and i am disabled. There are, of course, plenty of other facts about me but these are the most pertinent for this moment.
 I had another blog (Pelvis, Interrupted) my first ever, but i never managed to get into the feel of what i had made for myself. So, after a particularly turbulent time in my life i have decided to leave my caterpillar blog and move on to a new place, which i hope will become my butterfly blog (if you'll forgive the clumsy nature reference).

My youngest child, John, is now 13 months old. He is crawling, trying out speech and days away from his first proper steps. During my pregnancy with John i suffered (though never officially diagnosed) with DSP (the more severe form of SPD). By 12 weeks i could barely stand, and yet somehow i carried on. I couldn't accept what was going on, the horrid pain or my increasing dependence on my husband. By the time John was born i couldn't lie to myself any longer, i needed help and i needed pain relief.

John, attempting escape.

Over the following 13 months very little has changed for me physically. I am getting around a little more, but that is simply through sheer stubborn stupidity. My pain is constant and sanity defying. I am on a cocktail of pain killers but still the pain is often enough to have me heaving and in tears. I live on the sofa as i cannot make it up the stairs.
 People have a lot of trouble understanding my pain and the mobility difficulties that have arisen from the damage to my pelvis. To try and give you an idea of just how loose the relaxin made me, my shoulders are still loose now, as are my knees, ankles and neck. The main areas of injury though were my pelvis and my back. The doctors are at a loss to explain to me what is going on but i think ive managed to figure it out. I think my loose pelvis did something to my back, it makes sense if you think about it.
 I had an MRI and the doctor that read the results was insistent that i have "an old injury" to my spine. I've never had a back problem before so all i can think is that he misunderstood the scan somehow.

It's all academic anyway, as whatever the doctors say, whatever anybody says, i'm still in pain. I still can't bear my own weight, i still cannot sleep for the pain, cannot do what i need to get done.

And now, i am single again.

And it is hard.

These are my experiences.

Thursday, 20 October 2011


Hello there new and not so new readers.
Thankyou everyone who has followed me over here, i appreciate your patience and commitment.

Pelvis interrupted was good for me for a while, but so much has happened and so much has changed over these last few months that it just didn't feel like 'me' any more. It got harder and harder to post, all the while i was more and more determined to have somewhere to express my views and experiences and chronicle my (our) life.

So, this seemed the best option to me. To quote a good friend; "A change is as good as a rest".

Becki xx