Friday's Notes

Well its Friday again. How fast are these weeks going? I think its a case of I move slower than time passes. I am no where near ready for the forthcoming festivities, but then when have I ever been ready? I really don't have to cook anything but I am the supervisor in this place. I see to the overall buying, cooking, cleaning and arranging for the big family lunch. It's at our place this year. Our second eldest had wanted to do the whole thing at her place but in reality it is just too hard for me to access her house and then get a comfortable seat.
I know it is disappointing to others when their plans have to be altered to suit me, but there is little else I can do except stay at home.

He menu for the lunch is as follows: Baked, glazed ham, turkey, roast potatoes, pumpkin, carrots, gravy.
Dessert is trifle, fresh fruit and if our eldest can she is making one of her very popular cheesecakes.
All in all there will be plenty of food, laughter and a lot of noise.
We will have all five girls here this year, the first time in four years. I must try and remember to take photos.

On Tuesday I went into hospital to have my second iron infusion. I had to wait quite a while while they found the doctor to insert the cannula. He told me that my veins were hard to detect due to my size and also because I was quite dehydrated. I never realised I was. Anyway after two sticks he managed to get it in right and I was set up with the iron. Lucky for me it didn't take as long as the first time. It does get boring sitting there. Lucky the bloke is adept at packing some nibbles for me and a lovely sanga for lunch. But by 2.30pm I was finished. I thought I would show off my battle wounds. This is the first stick that didn't work. Pretty colour bruise eh? Does not hurt at all though.

The bloke does not like being exposed to the world so this is the only picture I am allowed to put up of him here. But I do it so that you know he is real and not a figment of my imagination. I know he almost seems to good to be true. For all the things he does for his family and especially me I thank him. As my mother would say he is a 'Diamond in the rough'. Yes mum he is. :)

Talk to ya soon,

Final Episode

I hope you weren't waiting with excitement for my next exciting post cos I was AWOL for a couple of days. I was not feeling like writing plus was lucky enough to have visitors.
But this story will conclude today so it may be lengthy. Or not. I will see how I go.


My experiences of being pushed in a wheelchair are mixed. On one hand I was so pleased to be able to go with the bloke into shops and other places without wondering if I would make it. Well in fact at this stage of my life I most definitely would not have. I can walk a few paces with a lot of puffing and groaning. It almost takes all my breath and I do become quite anxious. It is a most horrid feeling to struggle for air. I am also a little more anxious because for the few years before my mum died she suffered with emphysema.
Anyway where was I? Oh yeah, on the one hand I had the safety of the wheelchair. That is if you dismiss the blokes uncanny knack of pushing me into any object in our vicinity, but on the other this was all done in the public eye. The first day I was quite surprised by my lack of concern at the stares, glares and pure stunned ogles. lol This is a big thing for me. I tuned out of others possible negativity and tuned into the happiness of the bloke and I. He was also pretty pleased at having me with him. He often says he loves shopping but he wishes I was with him, as that would make it even better. Gotta love him eh?
It is quite confronting to rely on someone else in this manner. I worked for about ten years in the disability sector. First as a support worker, then co-coordinator of an agency and then later on as the executive manager. And although I had great rapport and empathy I did not fully understand until I experienced similar things. Like not fitting in some shop doors, or down the aisles.

Well folks I have been writing this blog post for the past three days. I just didn't have the energy to complete it in one sitting. Yes things are that bad. I am not happy to report that I am still having issues with overcoming the claustrophobic sensation of the masks. I am working on it with desensitising or flooding as it is also called. There is another thing I am doing but honestly I can not remember what it is. This is a legacy of the brain being deprived of oxygen. Not a good thing. My brain is so tired that it is shutting down on me. Memories, especially short term is very much affected.
So with that I will leave it all there.
I really must give in to this urge to nap...

Till next time....

Wednesday-Part 3

Hello

Well today we get to the whole reason we went to Perth last week. I was referred to the sleep studies clinic to see how bad my sleep apnoea was. There was no question if I had it; my symptoms  quite clearly showed that with extreme weariness, lack of concentration, memory loss and irritability.
 I first met with the sleep specialist, a man of few words. I was booked to sleep at the clinic on the Wednesday evening and had to report in by 7pm as the technicians have to put all the recording devices on you. From the top of my head to the legs I was plugged in and very uncomfortable. I was also laying on my back on a three inch foam mattress; it was a recipe for disaster. I only ever sleep on my side as I have back pain and also it is easier for me to breath. I was unable to turn over in this slim bed and so was in quite a lot of pain. The bloke thank god stayed with me all night. Actually the staff asked him to so that he could attend to my needs as they don't have nursing staff in the clinic. He was assigned the next room to mine.
 If anyone has had this test they will understand how difficult it is to sleep. There is also a camera above your head to record any movements.
I moaned and groaned all night, was not able to sleep despite the blokes best attempts at massaging my legs and feet which usually does the trick at home. I eventually sent him off for some shut eye.
I had to ring the buzzer three times as the pain was intense and worsening and I was getting anxious and feeling ill. At 3am I decided to get the technicians to call hubby back in. It was decided that as I was unable to sleep they could let me leave. I was happy with that. Apparently even though I thought I never slept a wink they assured me I had slept enough for them to take data.
I was informed at the follow up appointment on the Friday that my case was quite serious and that I stopped breathing 196 times an hour! They issued me a cpap machine which I am to trial for 4 weeks after which I then return to the hospital so they can decide on the course of treatment which will likely be me having to purchase a machine of my own and use for the rest of my life. The following images courtesy of Resmed show the woman with the full face mask on. This is the one I was most anxious about as I am claustrophobic and this one as you can see encompasses both nose and mouth. I was anxious and hyperventilating when the technician tried to put it over my face. I took it from her and placed it on myself which made me feel more in control so a lot less anxious. The other mask worn by the woman at the bottom is the nasal pillow.  This was less cumbersome but still a presence felt over the face. I had thought this would be the one to use for me but after trialling both I am not so sure. So now I am alternating the nights and working out which one is for me. This is very serious for me and the health consequences if I don't use the treatment are rather dire. I am giving it 100% effort and if it fails it wont be be for lack of my trying. the other pic is the cpap machine. It is very not to large and very quiet. FYI the original cpap machine was a vacuum cleaner in reverse mode. They sure have come a long way since then.

 
Well if your still reading good on you. Not to sure if this has been interesting reading or not but it is my experience and all that I find.
If your still keen I will be back for a final part and some exciting news, for me anyway. :)
 
Thanks

 
 

 

Part Two-Tuesday

Hi, as promised I am back to report on last Tuesday's activities. In the weeks leading up to the trip I had researched and located a business that hired out equipment for people with disabilities. I was able to book a large wheelchair and we were to pick it up early on the Tuesday morning. Of we set with map and address . Of course the search for the place was made that much harder by the ever present road works. The street we wanted was blocked by bitumen trucks so we had to detour, but with some good driving and detective work by the bloke we found the place and quickly loaded up the very large wheelchair. We then headed for the nearest shopping mall which was Westfield Carousel. Leading up to this day I had been very worried about how I would cope going out in public after a few years at home. I worked out that it had been about 7 years since I had been into a shopping centre. After sitting in the chair, I made sure that my skirt was covering my legs so that no-one would be affected by a flash of my brilliantly plump legs.

pic from bariatric product catalogue


I steeled myself for the expected looks, comments and rudeness. As we bumped across the car park (yes we had parked on the outskirts of the car park as the ACROD bays were all gone I wondered if the bloke was going to tip me out of the chair or get me run over. We made it to the doors and as they slid open my senses were assaulted by the noise, smells and visual smorgasbord. We were in. First stop was the chemist where I purchased a new pair of sunglasses. My reasons for doing this was I had misplaced my sunnies and I felt that if I wore the glasses it would help shield me from the stares. Yes a bit of ostrich like thinking there. ha ha.

 Then I saw that they stocked the toiletries that we use so we bought those before heading further into the mall. Of course I noticed that people were staring. I expected it but the surprising thing for me was that I was so happy to be out and about buying able to buy some things for myself. The magazine kiosk with racks of colourful goodness drew me in like a moth to a flame. So much choice. I was in heaven.

 The bloke pushed me from one end of the mall to the other and the poor thing he did a great job as it was hard work to push someone so large. I couldn't get over the amount of food stalls in the food court. The blended smells of various artery hardening products made my stomach to flip flops. After a couple of hours or so I asked the bloke to get me out of there. The noise, the piped Christmas songs, the crowds, the hustle and bustle the overwhelming plethora of shopping temptations had taken its toll. Oh and when we went into the Telstra shop I was left unattended when I was sitting right in front of the counter waiting to be served. The young man didn't appear to see me or the bloke standing there. He looked to the young girl behind us and asked her if he could help her. I was stunned and turned to look over my shoulder and then saw the look on the blokes face at the same time as he muttered we were here first. I am not sure thought whether he genuinely did not see us, or if he was put off by the site of the fat, middle aged woman in a wheelchair. Never the less when he served us he was business like and helpful. Turned out he couldn't help us as I had not taken the ipad in with me. Oh well that happens.

The medical appointments were to follow later that same day but I will leave it here as I am shutting down in the brain department now.

So until tomorrow, take care and thank you for your interest.

Part One-Monday

Hi I have returned. I have so much to tell. However to prevent my news becoming bigger than a novel I will break it down into different parts. Please don't get too excited, it's not the stuff of nail biting climaxes, rather some observations on my experiences.
To start with the tip to the city was as expected. I was only in the car for fifteen minutes when the pain started. The knees, feet and lower back were all pinching me very unkindly. Panadol offered no relief. There were quite a few stops so that the bloke could lift my leg out of the car and allow me to stretch it. I am so grateful for his help. My legs have lymphodema and they get worse when stuck in the car like that, very swollen and harder to move them.

Anyway we made it to the city but before we booked into the motel we had to head toward the city to pick up my ACROD permit. For those not in the know, ACROD is the organisation who organise the permits for those who have a disability of some sort to access buildings.
It took us ages to locate then find a car park in this busy suburb, but finally we had my permit. The only reason we had to pick it up was that they did not send me a renewal and so had to be reissued and it was easier to pick it up.
After unpacking the mountain of stuff the bloke went in search of a few supplies as this unit was not self contained and we needed to buy brekky and snack foods and fruits.

It was so good to stretch out in the cool of the air conditioned room.As I pondered on the upcoming appointments I wondered how I would cope with the wheelchair I had arranged to hire. I have not been able to access shops or anything much for some time and in fact we think it is about 7 years or more since I have been inside a shopping mall.

Stay tuned for part two, hopefully tomorrow, but please forgive me if I don't post as I am very tired.