Archive for the ‘disability’ Category


realistic fight

March 20, 2012

So after the last entry I went a bit “I’ll fight the world as not fighting is making me feel very trapped/dependant/down”. Top of my list was the children’s centre access and parking. But I very soon realised that I don’t really want to access the centre anyway as the breastfeeding group that now meets there still doesn’t feel very me, so I was fighting it on principle only… I don’t have the energy to be that principled.

I have been out and about with Jess in the car more. We’ve been to rhyme time twice (again not really my thing, but it’s short and sweet enough and local and free…oh and I can double yellow park outside) checked out the breastfeeding group again and done little errands shopping (admittedly overdone the walking there though, as manual wheelchair and sling really doesn’t work and the hoist takes too long). I have also been out with Jess in my temporary sling by foot, just a very brief potter and also in my powerchair for half an hour stints in the SUNSHINE!

Simon has had 2 days off this week and we’ve enjoyed some extra family time. We baked, went for a long walk/wheel incl picnic. I went to get my eyes tested and tomorrow pick up my new glasses (a new look is always good right? I’ve taken baths with Jess and enjoyed anything from 10 minutes in bed reading afterwards to tonight’s half an hour as she is asleep on Simon! That warm out of bath (fresh sheets on one night) cosiness is bliss especially after the giggles of Jess in the bath.

Pics at Lydiard Park Swindon

family walk

family picnic

She’s one amazing little girl and I’ve felt that even more since I’ve been looking out for me more.

I should be getting my custom opitai baby carrier next week… watch this space!


Calling a spade a spade

February 27, 2012

Except that that spade may be postnatal depression or ME & winter related depression. Who knows where what starts and stops. It’s definitely reactive though.

There’s been stress from (some) family, expecting more than I can give and not listening.

Having a baby has brought people out of their holes, once. stirring up mixed emotions but mainly that of how immaterial material things are.

Jess has had colic, cue screaming and screaming. Nappy free time, baths and slinging with music and walking helped as did introducing a dummy. She also has reflux, cue more screaming esp when feeding,
lots of sick, disliked her carseat (unless someone to constantly distract next to her)… but I was reluctant to medicate (haven’t) as it wasn’t every feed and the medication has side effects and medicating her for her thrush at the beginning was a battle in itself. I had to seriously limit vegetables until relatively recently tho!

I haven’t had the right sling (or the right weather) for getting out of the house in my wheelchair with her for quite a few months.

Cabin Fever! I won’t and can’t cope with screaming unless it’s unavoidable.

I’ve beeaten myself up for not coping better. A self perpetuating cycle. Also hated how little I’ve been able to communicate with those that matter with photo/video updates.

I’m exhausted (yet I also believe that breastfeeding is affording me more energy as is the case in some autoimmune/neurological conditions)

But I’ve named it. I’m grabbing the bull by the horns. I’ve spelt how I need Sy to help me (our relationship has def suffered as we’ve had 0 time). Jess is better (ish) in her carseat now so I’ve been to rhyme time last week, I have a temporary sling and one on order and damnit external stressors can go jump! Tomorrow a neighbour is popping in for coffee. I’m lifting my head out of the sand.

There’s so much good stuff but i’ve been shoving the bad stuff under the carpet and well there’s some of it-as much as my still baby & M.E. affected brain can cope with.

I have no idea how often this will get updated.


a little low

July 8, 2011

So this week hasn’t been the easiest. DH has had some medical investigations (investigation stress more than d/x stress) and then I had an antenatal appointment with the Dr instead of the midwife.

On my antenatal notes, plastered right across the top is Group B Strep. I had a positive test to group b strep IN my kidneys 16 years ago. At the beginning of the pregnancy the dr said “oh you’ll be offered antibiotics during labour”. I don’t do drugs well with my M.E. so I was a bit perturbed by this and after a bit of further reading questioned him again as my infection had been so internal and had never reoccurred “oh well it likely will during pregnancy” was his reply. Since then every time my midwife opened my notes she went “ooh group b strep” which was really beginning to annoy me, especially as reading up on it, it is a bacteria that a large proportion of the population carry asymptomatically and the risk of newborn infection and then death is VERY low and that antibiotics do not hugely reduce this risk and in fact carry further risks to baby (such as good gut bacteria being killed off, yeast infections making feeding hard, antibiotic resistant infections etc). So I wrote in my notes about how long it’d been since the infection, where the infection was and no reoccurance since. This stopped the midwife going on about it at all appts, but it still wasn’t clear if I’d be “offered” anti-b’s during labour, where I could labour… The midwife said it was a matter for the Dr.

The night before I printed off the research I’d found (shout if you want links-they are nicely scientific) and highlighted the areas (oh yes I’d already given a copy to my midwife, who understood from that that I really wanted a birthing unit birth and no antibiotics). I was a bit of a wreck, what with low energy from the previous few days, pregnancy (incl the tmi symptoms**) and was also playing a childhood favourite CD (well we had it on LP when I was a kid, but just got the CD ready for bump!). Tim HartRalph McTell’s Sally the Seal had me sobbing!!

I felt calmer on the morning of the appointment and enjoyed knitting in the waiting room, watching some toddlers play (cars are universally the favourite toy there!). Went in to the dr who it turns out was seeing me to ascertain an M.E. update, check my left sided weakness stuff again… I apologised about writing in my notes, but explained why and then I asked if this meant I could not birth on the birthing unit (instead of the medical unit-which incidentally is 1 floor down!) and was told that there was NO reason not. He did say I’d be offered anti-b’s but when I said I’d prefer not, he chipped in that it wasn’t a foolproof system anyway (wish I could remember his wording!). No fight needed, no presenting of research needed. It’s my choice. He did later put a few “what ifs” at me, but when I said that of course if there are complications that I would weigh up the issues then, he complimented me on being open minded and pragmatic!

I get to see him again next week, nothing to do with the above, but because he thinks baby may be breach. I am having a scan to see… I don’t think it is, but if it is will just wait and see… Am going to have to make sure the sonographer knows we still don’t want to know the baby’s sex!

I finished baby’s second “baby leg” (legwarmer) today ๐Ÿ˜€ … so that’s 2 pairs of socks and 1 pair of baby legs. I plan on starting a sweater for it over the weekend.

๐Ÿ˜€ typing this has been quite calming ๐Ÿ™‚

** a side note, almost literally. To avoid aggravating the piles, I am spending a lot of time lying on my side instead of sitting. Lying on my back is out as I feel too ill (pregnancy). i can browse the internet/read/watch tv in this position, but cannot type/knit/write which has led me to be very bored indeed.

ETA: another low was seeing a photo of me and bump sat in my wheelchair. I just look fat ๐Ÿ˜ฆ -photo was taken at a choir performance which I didn’t particularly enjoy though so…


A new venture.

April 2, 2011

So once upon a time, this blog was set up as a creative journal… I wasn’t the best blogger and then it ground to a halt completely. My husband got a new job, we moved house, DIY started all over again.

I am now hoping to start writing about creatively parenting… why yes, I’m pregnant!!(planned cos someone’s bound to wonder)!! Why creatively parenting? Well living with a chronic health condition requires lateral thinking at the best of times, but the prospect of parenting will require even more!

I’d like to link to The Spoon Theory and ask you remember that you are seeing snapshots of my life. Chances are you’ll see the best of my best days, but not the worst of my worst days or the mundane day to day, that’s the type of person I am. I’ll vent after a meltdown, but rationalise it and be smiling again, even if healthwise I’m still pretty crappy. Am basically a private person, who getโ€™s on with lifeโ€™s ups and downs instead of writing them down forever moreโ€ฆ


Spring sprung

April 10, 2010

Before Easter we’d had the joys of snowdrops and the daffodil were looking willing, but this week has seen the daffodils burst out and come the end of the week, warm sunshine came along on Thursday too. I was very glad of that sunshine as my limited energy was beginning to bug the hell out of me. Getting outside to the patio (a few feet from the sofa) to photograph some projects proved that the sunshine was warm enough to be outside without being wrapped in tonnes of layers too. So after unsuccessfully being artistic (my snapping had to happen from a seat) I grabbed my knitting and sat outside for an hour to knit.

Pic of what could have been more artistic if I’d got the snap angle better: Still, a pretty daffodil and cheerily bright socks.

Today Simon needed to head out for DIY supplies and so I tagged along and we went for a walk along the river on the way back. I’d originally thought of parking along the ringroad, but we headed to waterend instead and headed west (out of the city). We’d previously done the river walk from waterend into town or from town out towards rowntree park, but this bit of the river walk (up to the park and ride anyway, beyond that the ringroad invades the senses too much) is my new favourite bit. I managed all the kissing gates in my chair-albeit not easily (the one the other side of the ring road was a NIGHTMARE-felt like I could’ve ended in the river at the slip of the joystick)-I didn’t brave the cattle grids as if the jockey wheels swivelled (and they do) I’d have been truly stuck. Radar key gates like on Hobs Moor would be welcome York council (hint hint lol)

Decided that if I were to do the walk by myself parking at the park and ride wold be a better choice as the hoist for the wheelchair is troublesome on the hill at waterend (although could go a bit further and park on the street). While checking out parking t+cs atthe park and ride Simon went to the loo and came out, KNOWING I’d be sat on the swings at the playground (no kids prevented from playing, the place was empty!)

Two pics of Simon (I had the camera) on the swings. The first-helicoptor spotting as only he knows how!

Since being home I’ve been thinking about how great that river path would be to cycle. Last year at the cycling festival (Simon’s a keen cyclist, MTB and commuting) I tried a handcrank bike (I’d also tried one in the peak district when we camped there. It’s a wheel that attaches to the front of a manual wheelchair lifting the jockey wheels up and it has pedals that you “crank” with your arms). Loved it-it killed me. Which is why when I was given the opportunity of trialling a handcrank bike indefinitely and for free I made the very sensible decision to turn it down. I’ve got where I am by being sensible though and I love my chair…

Sensible or mad I’ve also been considering ripping back a sweater I’ve had LOADS of compliments about (and the most hearts on ravelry), because honestly I’ve only worn it a handful of times.

I used the “wrong” cast on for this and it’s a little tight at the bottom (knit bottom up, no yarn left over) AND I feel very self conscious of my wobbly tummy in it. Plus I’ve come to the conclusion that illness affects clothes choices more than I’d realised. Tight things can hurt and I need temperature variations (usually options to be warmer)…

So yes frugal knitting is making me think of reusing the yarn for a garment I’d wear more often. I’ve not forotten about photographing the grey reincarnation, but I need a photographer to do that ๐Ÿ˜‰

Next sensible choice is to shut up, hurry my hubby out of the bath so we can have a beer and some food together.


another brief un

April 5, 2010

got a stinker of a cold after the last post. Then had several weekend commitments… Easter’s hopefully seen the last of my energy disappear down the plug hole-onwards and upwards and hopefully on to some photos!!!


Design in the mobility world

March 3, 2010

As you’ll have been able to tell from my house entries, I enjoy living in aesthetically pleasing surroundings. Aethetically pleasing to me is about texture, materials of the items, lines and colour. This needs to be mixed with a good dose of functionality too. Hence I’m looking for a sideboard that will offer the same storage space we currently have in ours, but in a better layout, made out of solid wood and clean unfussy lines. I’ve been looking for a while, as my budget is also constraining choices, but I know what I want exists and if we have to save up longer for it, so be it.

However when it comes to an item that spans 4m, gets used several times daily, choice does not appear to exist. I’ve been researching a new stairlift. Bogstandard stairlifts are made of this beige, grey plastic and sometimes you get the choice of upholstery colours (usually beige, blue or red) and usually vinyl or bus-seat scratchy stuff. Thfey invariably have office carpet on the footrest-the grey corrugated stuff? The rail is now often quite sleek compared to older versions, powder coated cream or stainless steel aluminium (I meant in colour not material) -major dust gatherers, but relatively easy to dust/hoover. Talking of dust, there are some many difficult to reach bits on the stairlift chair part… major design flaw. When parked up, stairlifts usually require folding up, to allow other stair-users better access. This means the arms fold up, the seat folds from mid seat and the footrest folds up too. Giving you a sea of the grey-beige plastic and some odd shapes. Mum and I tried making a fabric cover for my stairlift, but due to the folding and other parts (swivel levers and on off switches) it really didn’t look good.

Googles best efforts brought up one website showing a nicely upholstered chair, but still the nooks and crannys for dust and a slight improvement on the grey-beige, but not much of one. When folded though, this chair looks uglier than most!!

This is not the first time I’ve stumbled upon a massive gap in the mobility market. I’d love to have a team of welders, electricians etc to hand to design something from the end user point, whilst CONSTANTLY considering cost, as mobility products carry a high price. form and function.

in the meantime, back to swatching for a gorgeous cardigan.