Home Alone

I feel no one cares and that's the truth, there are numerous health professionals doing their jobs, but do they actually care, no I don't think so. They don't see the need half the time and then they promise you the earth and nothing happens. Its been a month since the 'right OT' came by our house and assess it for adaptations. Since then, nothing, zilch no communications whatsoever. I know she works part time, and I know shes been on holiday but it would have been courteous to maybe just drop us a line and say I have done A B & C. At least we would know if anythings going on, if the application has been made, can we expect anything at all? I'm so sick of tired of coming across people who make you believe they have your best interests at heart and yet you end up battling for every bit of help you need. Its no wonder Ive always shrugged my shoulders and shrugged on. I'm fed up of being made to feel that I'm asking the earth when Ive paid taxes for 20 years or so and taken hardly anything from the state before now. I'm sure there is something called 'middle class-ism'. They come to your house and see its nice and middle class and clean and everyone is looked after and go away because you are well spoken and educated and you know all about your condition etc etc. the truth is if we lived on some inner city estate and I only ever gave my kids chips then the whole world would be round like a shot. Because we choose not to have that life no one thinks we need any help with anything, they assume we have resource's, they assume too much. I do not have one person I could call on in an emergency, not one person I could ask to take the boys for an hour, not a single soul to help out. How awful is that yet of course we are fine and middle class and educated and don't forget totally on our own.

The Jolly AquaJoy

Well I have a brand new super piece of equipment, its a bath seat thingy. Actually its the very posh AquaJoy Premier Plus bath lift. Hmmm like the name huh?! So its sitting in our kitchen in a very big box with a huge red sticker saying Do not install yourself, or something terrible is going to happen, which is a bit like Santa coming and then saying you cant open the presents for another week, as I suppose Ill have to wait for someone to turn up and show my darling husband how to get it in the bath.

Now Ive been offered these gadgets for the last couple of years and like the bloody stubborn fool that I am Ive always said Oh no thank you, not for me, I can manage etc etc. Yeah right! Last years pregnancy was a reality check in so much as it made me realise just how much I cant manage and how there is no shame in taking a hand from people. Now I tend to shrug my shoulders and just go OK, whatever,.. sounds like a good idea. If it makes life easier so be it. The path of least resistance. And its also the right path to be on most of the time. Here's a picture of a lady getting much joy from her bath, obviously I too will be equally joyful as I recline with that book I'm getting through at the moment, a glass of wine or a mug of tea, Yes I'm sure the AquaJoy will be making me laugh too!

Rectus Abdominals

Oooo-Er Missus, my Rectus Abs are really sore!!!!!!! Ok I know what that sounds like but in reality these muscles are the ones that run down the front of your stomach, and men everywhere try to turn into a '6 pack'. Well of course Ive not had a 6 pack or even prominent muscles, ever in my life, never actually been interested anyway. However over the last week or so, these muscles in particular have been very sore, you know, like when you had to do that bloody awful circuit training in school and all those dreadful sit ups... So what do the Rectus Abs do? The rectus abdominis is a key postural muscle. It is responsible for flexing the lumbar spine, as when doing a 'sit-up'. So I suppose thinking about it, mine must have been working overtime lately as Ive had a lot of high back pain and the Abs must be working hard to keep me upright.

Informed Choice

When I made a positive decision to have an indwelling catheter, eyebrows were raised to say the least, most Dr's prefer not to use this option for a lot of reasons, but having battled gamely on with intermittents, I just knew it was the right choice for me.

When I was a teenager I was one of those girls who was always getting bouts of cystitis for no particular reason, and this continued into adulthood. Boy I suffered at times, Id never wish it on my worst enemy frankly. Like I said no one ever knew why I got it, there was no obvious reason, it was I guess, either the way I was made, or something to do with the flora in my gut and/or bladder. So when I found myself in the situation of having to use catheters, at first life seemed a lot better, only that didn't last long, and for the majority of the time I have suffered with pain, infection, discomfort, leakage and general misery. It hasn't helped my quality of life one bit, and despite reassurances from my urologist, I just knew it wasn't, and wouldn't work for me.

My urologist wasn't at all happy about my decision, and reeled off 1000 reasons not to have an indwelling, but hey its my choice, and add in the ongoing hand complication over the last 6 months, it meant I wasn't actually finding it an easy procedure to carry out anyway. I need some quality of life, I don't want to smell, ( paranoia creeping in there) I want to feel better. It was with some reluctance that she agreed to it, and now I can change it myself, and have control of my own body. I feel better drinking more and have noticed that the infection Ive had forever seems to be clearing up slowly without the use of antibiotics anymore, and do I feel better? Yes I feel 100 times better, I feel lighter, more comfortable, that horrible stinging pain has gone, and my life has improved a zillion times because of this.

So its all about patient choice I guess. At the end of the day we know our bodied best, I have taken a rational decision based on full knowledge of the facts, and while it may not be the best option for many, so far it has worked brilliantly for me. Life is all about quality and by making a different choice I have improved mine in countless ways.

Couch Potato

Im not one given to longing around doing nothing as you may have noticed, but my husband was asking me about what would make my life better. So as we have talked ad nauseum about domestic matters, I said what Id really really like is a tv in the bedroom. You know so you can coze up and watch a film or something. Seems really decadent I suppose its just that I dont get much time to do these sort of things and by the time I do Im ready for bed. So its a good compromise, well I think so anyway. I was really surprised he jumped at the idea. Great, brilliant he said and is in the process of trackin down a wall mountabe flat screen tv a a good price. Its amazing what you can find on the net. So Im sort of looking forward to the whole experience. Is this a sign of getting old perhaps?

Social Care

I thought until recently I had this all cracked, that the disabled life was all fine and dandy and that I was this super wonder woman. So when the OT said, We need to get someone in in the mornings to get you up, dressed and into your chair, that made me feel like the most disabled person in the world. My first reaction is along the line of What me?!! Are you kidding? But actually she wasn't. Then the more I think about it the more I sort of have to acknowledge she is right. I'm not great in the mornings as the whole thing is quite an effort. It will get considerably worse as I get further along in the pregnancy and my husband will in September have to get me up, a toddler and the eldest to school by 8.45. Come October there's an extra baby as well. So although he may be totally marvellous, he isn't Superman to quite that extent and she is quite right in thinking that if only for him and his sanity we will need an extra pair of hands sooner rather than later. So as I think about it, its not so bad having a stranger do all those things that have to be done, all those personal little things,........I suppose. As a friend said to me, you know if you were a millionaire you'd have helpers, servants wouldn't you? And of course if I was rich Id have every bit of help going without blinking, so this of course isn't really any different it just feels it. But from now on I'm just going to pretend I'm a millionaire and that this is all my choice.

My back is KILLING me!!!

Its no exageration to say that my back is killing me. Over the past 5 days Ive lost movement and everytime I shift Im shouting ARGH as its just so sharp! I cant bend forwards or swivel my trunk and its as if my back up to my shoulder blades has totally seized up. Im even having trouble pushing myself around. I spent the afternoon in bed today as its about the only relief I have. Could it be spasms I wonder? My trunk seems to be very rigid. I can hardly do transfers or get in the car and Im having to rely on my husband for everything. Its so very painful and came on quite suddenly. I cant think Ive done anything energetic to cause this. To be honest I dont wnt to go and see my GP as I know she will either refer me on to someone else again, or decide she cant prescribe anything anyway. So unless I really have to I dont want to go. For the next few days anyway Im just planning to relax, relax, and relax.

Whats in the Box?

In our bathroom we have a large walk in cupboard that is absolutely wonderful for storage. In particular its great for hiding all my 'personal' items. But having a look at all the boxes yesterday I decided it was no good, it was time to get everything out, and have a tidy and see what supplies I really have.

Every time I see my urologist, the nurse there always presses upon me a bag of samples to take home. I suppose every health company in the country sends her stuff and so she obliges by passing it on to us the customers. So to start with I have samples by a multitude of makers. Colorplast, Bard, Manfred Sauer, Simpla, LoFric, and so on. Ive got every type too. There are Foley's, Intermittent and Compact, big bags, small bags and night bags. There are also spigots and lets not forget bum plugs. I have enough alcoholic hand rub to start a business and also endless supplies of KY jelly and handy disposable bags. Oh yes its a cupboard full of unimaginables. Its also the one place that really reminds me of my disability and how no one ever expects life to be like this. Still having said that I could probably sell it for a nice sum on Ebay, its just a pity I have actually use it all really.

Poor Chap

So my back is absolutely killing me. Its so bad I don't want to talk about it as its cutting right through me. I think its mostly caused by having to pick up a large baby all the time. Hes cutting his teeth and poor chap has a terrible cold and looks both hot and pale at the same time. Hes crying a lot which in itself doesn't actually drive me mad but I'm sad for him because hes usually such a happy little soul. So I'm cuddling him a lot right now, and its doing me in I can tell you!

Anyway Im trying to catch up with my emails to friends. So if you havent heard from me I havent forgotten you Im just burning the candle at all ends at the moment.

Getting the work done.

So I finally got a visit from the right OT. She seemed nice and helpful and I'm trying to feel positive that we will get some useful work done on the house. Of course I'm trying to remain pragmatic as well. So many times Ive thought 'Yes this is it' and then been let down by the powers that be so I'm waiting to see what happens next. She now has to go off and get the appropriate funding whatever that may be so how long that will take I have no idea. I just hope it doesn't take too long because I will be stuck at home with 3 small children sooner rather than later.

Yawn!

The reason I haven't posted much is that Ive been really really tired for the last few weeks. I mean unbelievably drained both physically and mentally. I haven't really felt like doing anything that required any mental effort at all. And physically I'm just pooped through and through so Ive been getting early nights when I can. Its a sort of unbearable fatigue where I will say to my husband, I have to go and lie down NOW!!! because I'm knackered! And I mean now, not in 20 minutes times. Its the sort of fatigue that makes you feel as if you are going to collapse, and I hate it.

Ive also had uncomfortable spasms which is probably my body telling me that something is going on or my UTI has got to the point of not coping with it anymore. Either way Ive had one running from my backside down the back of my leg. Sort of like when you get cramp when running, or pull a muscle, very uncomfortable. Ive also had one in my left knee. Its very sharp, continuous and makes me mutter OUCH. Its like someone banging the side of my knee with a hammer. Sore indeed.

So if I had my way Id take to my bed for at least 6 months, but somehow that's not going to happen is it!!?

Dont say what you like

Children are like buses, you wait half you life for one to come along, and suddenly 3 turn up in quick succession. Well so it seems anyway. I still cant believe we are having another addition, but we are so I will have to get used to it. Unfortunately Ive had some negative reaction from family and I feel suddenly less inclined to talk out the whole thing. Unpleasant comments about my/our ability to parent seem uncalled for at best and actually I think I'm a pretty decent parent actually. Anyone who meets my son seems to think so anyway. Lets just say I'm a bit down about it. Just because I'm not as physically able as some doesnt mean to say I am incapable. But then it probably does to some. So I don't really feel like telling anyone else much. Its one of those things when even if you are surprised, like us, you really want people to say That's wonderful, marvellous, congratulations! Because the creation of life is isn't it? Because of my disability I think some people think they can say anything they like to me and my husband and actually it hurts a bit.................sometimes.