Thursday, February 13, 2014
Hello dear Spark Friends,
Greetings from what has been an extremely hot Adelaide since the start of the year. There had been the odd short break but then we've had temperatures back over 40 degrees Celsius. Add on night temperatures that don't fall below 20 Celsius and our house feels like a furnace. Everything inside cupboards and wardrobes is hot when you take them out! If you have kept up with my blogs you will know that for structural reasons, installing extra airconditioning isn't an option. We do have ceiling fans in our bedrooms, though it gets like a fan forced oven and we're drenched in perspiration through the night if we actually manage to fall asleep. I know how ironic this will sound to those of you who have been faced with Arctic freeze conditions!
The heat also aggravates my Allodynia condition, so a lot of the time I have the sensation of my back being on fire, and though I take pain medication, this only takes the edge off the pain. While that medication makes me sleepy, it had been a challenge to get a restful sleep of late. Hence I am rather exhausted and drained from it all, and have had more trouble than usual being able to focus on anything.
My assessments at the Pain Clinic were yesterday and on Tuesday. I was scheduled to see 3 different people on Tuesday, and 2 yesterday. When I arrived and filled in the forms, I was told the one with the nurse was not going ahead since they were short staffed in that area. They did have someone doing a fellowship in pain management and he was going to sit in on the assessments, though. I saw the psychologist first, then the physician, where a lot of prodding and uncomfortable testing took place. That would have been it for the day, but the physio had a cancellation, so I was offered the appointment with her if I wanted to wait for around an hour. I decided that was a good idea - otherwise I would have had over a 4 hour wait from the end of my first assessment with the psychiatrist yesterday, and then seeing her as was originally scheduled for later in the day.
I found the psychologist personable, the physician so-so, and the physio also personable and very helpful. I told her I had tried what I considered a basic level of exercise (including chair exercises), but anything I tried aggravated or triggered more pain. I was both surprised and relieved that she understands the VERY basic level I am at, on account of continual pain restricting my ability to function on a daily basis. She showed me some very simple exercises, and said not to worry about trying to remember them as I'd had enough to use up my energy till I go back next week for the panel's review and recommendations, when she will give me a list of what we went through. I felt a glimmer of hope that what I expect most people would laugh at as 'child's play' in terms of how simple the exercises are, actually sound doable and not as taxing as I would have expected.
Then yesterday I saw the psychiatrist who I had trouble 'connecting' with, and left feeling a bit down. I also had not had a wink of sleep due to the heat, so I already started off 'on the back foot' and found that session very draining as it seemed like I hardly had time to catch my breath in between all the questions, plus I seemed to be in a state of 'brain fog', so that would all have contributed to my feeling it was a 'trying' session. Plus it was 43 and 42 Celsius on the respective days, and even just the taxi ride there and back is challenging for me. Anyway, it will be interesting to see what they all come up with next week, and where it all goes from there.
We finally have a break in the weather this morning and after another night of poor sleep, I am going to catch up on some more sleep soon. I wanted to get this blog written beforehand though, as I knew it would be less likely to get done the longer I left it.
I notice I have some email notifications of some of your blogs, and I will do my best to read and comment on them as I can.
Blessings and hugs till next time,
Please accept this as my thanks for taking the time to read my blogs.
I appreciate all your support and friendship - and may many blessings grace your day.
Sunday, January 05, 2014
Hello dear Spark Friends,
Thanks so much for your lovely comments on yesterday's blog. Still feeling a bit 'under the weather', but while watching today's broadcast of the cricket from the Sydney Cricket Ground, thought I'd write a blog about "Jane McGrath Day" and change my background picture.
Jane McGrath, wife of retired Australian cricketer Glenn McGrath, suffered from breast cancer and later bone and brain mets before her life was tragically cut short at the age of 42, in 2008. In 2002, Glenn and Jane founded the Jane McGrath Foundation, a charitable organisation dedicated to raising money to fund breast care nurses in rural and regional Australia, and also to raise breast cancer awareness.
To date, the Foundation has raised $12 million and funded 100 McGrath Breast Care Nurses, who have supported over 25,000 Australian families affected by breast cancer.
The third day of the test match at the Sydney Cricket Ground each year is now known as Jane McGrath Day, where money is raised for the Foundation. The ground becomes a sea of pink, as spectators, commentators and the cricket teams show support. The commentators are decked out in pink jackets, ties and Akubra hats. The Ladies Stand is renamed the Jane McGrath Stand for the day, and the Members' Village Green transforms into the Village Pink.
The Sydney Test is also known as the Pink Test.
The Australian cricket team players are each given a pink version of the traditional 'baggy green cap' that they all sign. Led by the Australian captain, they come out to the ground wearing the pink caps, which they hand one by one to Glenn McGrath. The background picture you can see on my page is that of Australian cricket captain Michael Clarke giving his cap to Glenn McGrath.
The opposing team are given a paler pink version of their own caps, which they sign, and also give to Glenn McGrath as they come out on the ground. The caps, along with the shirts worn and signed by each Australian player, are all auctioned to raise further funds for the Foundation. At the time of writing this, it was announced that so far just today, $450,000 has been raised, and of course more will come from the auction of the pink caps and players' shirts, plus further donations from the public.
Here are some pictures for pink fanciers everywhere...
The Jane McGrath banner is unveiled in front of the Members Stand:
Breast Care Nurses - and one patient, who is furthest left:
The SCG is awash with pink:
Getting into the spirit everywhere:
Australian Captain and Vice-Captain hand their caps to Glenn McGrath, watched by Jane and Glenn's children James and Holly:
I thought it was a pertinent subject to so many Sparkers and my Spark Friends, so I wanted to share some information about this special sporting day.
I send my prayers and thoughts to all Spark Friends who are touched by any form of cancer, in the hope that you all get the support you need, and God's blessings for recovery and that each day may improve, or at least be as good as possible.
Till next time,
Blessings, big hugs and love to you all,
Saturday, January 04, 2014
Hello dear Spark Friends,
This is just a quick update...
If I'm a bit slow catching up with you this week, it's because I have an upper respiratory tract infection.
I suppose one could call it a 'Summer cold"... This is day 7 of mostly unrelenting symptoms. The worst part is difficulty breathing from all the chest and nasal congestion...I'm taking a de-congestant - it just seems it has a lot of hard work to do! I'm doing all the right things, so with rest I guess it's just a matter of time for it to clear up. If is doesn't get better in the next week I'll see a doctor. Since most of these things are viral, I don't want to be taking antibiotics unnecessarily should their effectiveness be reduced any time in the future - I had to have 3 lots of antibiotics last year, so I'm very wary of this. There's no lack of distraction though - being a sports fan, there is plenty of cricket and tennis being played in Australia right now.
I forgot to mention in my last blog that I have a bit of good news... I had been placed on the waiting list for the Pain Management Unit at the Royal Adelaide Hospital a long time ago. It's taken 3 years, and late last year I finally received a letter advising me of a series of assessments they have booked for me in February - much to my GP's relief, as she has been very concerned at me being looked at by a someone who may be able to do more to help with all my pain issues during the past year. There are such long waiting lists for specialists, that I wasn't able to see anyone when I really needed to last year. So we'll see how it al goes in February!
I hope you are all keeping as well as possible.
Sending much love, hugs and blessings to you all,
Tuesday, December 31, 2013
Hello dear Spark Friends,
Greetings to you all! Are you sitting comfortably? Do you have a cuppa at the ready? I am asking because this has turned out to be a much longer blog than I expected!
As 2013 draws to a close, I would like to wish all of you many blessings for 2014, and thank you for your friendship this past year, and specific ones among you for ‘hanging in there’ with me, despite your own challenges. I was fortunate to meet Mel and Wendy in 2012, and we have kept in contact personally – thank you both for this, as it has helped to sustain me during my own challenging year….to Susie, who I haven’t met, your warmth and love shine through in every blog or page comment and when you are able to be in contact personally. To Anna, thanks for all your support during the year. Thanks also to my ‘overseas’ Spark Friends – to Chelsea, for stopping by to say hello or ask how I am; and to Shari, whose strength and grace are such an inspiration.
I apologise for not being able to keep up with everyone’s blogs this year. For those of you who have commented on my occasional blogs, thank you so much.
My sporadic time on SP is on account of trying to deal with escalating multiple pain conditions. This recap is partly a bit of background, and partly ‘filling in the blanks’ of the past year – as Shari would say, not to get your sympathy, rather it is just stating facts.
In March 2012 I was officially diagnosed with Fibromyalgia (FMS) and Allodynia (skin sensitivity and pain). I thought dealing with this was tricky enough last year, and was still unprepared for what was to come this year. I was officially diagnosed with Arthralgia in January (though I have had it since my teen years, it wasn’t as much of an issue till the onset of FMS). Neuropathic pain joined the list as well.
The combination of these 4 types of pain curtailed every activity you could think of. Everyday things that most people can achieve and seem common-place are now a big deal for me.
Most days I would wake feeling as though I had been run over several times by a semi-trailer. Simple things like getting out of bed, washing my face, or eating a meal were either painful or took so much energy, or both, much to my disbelief. The Allodynia pain increased dramatically from February onwards – I have been unable to tolerate any sunshine on me, and most times only able to wear the loosest possible night attire or footware. The pain is like being on fire, or wrapped in barbed wire, or both. Trying to wear a bra is like putting on a hot iron and vice at the same time….and water can feel like it is stinging my skin when I wash my face or body. The higher temperatures of our summers (like today) increase this pain as well.
I had a few ‘episodes’ of other issues that took some time to ease: a run of 2 months’ worth of daily back spasms that began in March - which triggered 2 moths of both daily nausea (due to medication issues), and daily IBS problems; in August a run of 2 months also of daily head pain and head aches where I couldn’t even bear the sound of the birds outside (I thought I was going crazy then!)…and a flu/virus that took 6 weeks to shake.
Then there was the daily FMS pain that took various forms...I often said to Mum that if I was to write about it all, nobody would believe it because even I couldn't get my head around how extreme the pain could be. There were many days when I could not sit, stand or lie down comfortably and wondered if I would stay sane or make it to the end of the day.
In the middle of the year, the neuropathic pain hit like a literal lightning bolt – with ‘electrocution’ type pain starting in my back, going through my shoulder blades and arms into my hands and fingers. At its worst, I could not hold any cutlery and needed Mum to feed me.
With all this going on, I was housebound and socially isolated as well. Personal friends would stay in touch via email to varying degrees, but with busy lives, and living fair driving distances away, I hardly saw anyone. The main reason I went out of the house was for a medical appointment, and that was in my PJs and dressing gown. I forced myself into ‘normal./street’ clothing in May/June for Mum’s birthday and Mother’s Day; and a catch up with some interstate visitors…however any ‘outing’ would take so much out of me, it felt like I ‘crashed’ for weeks afterwards…also CFS (as well as IBS) often end up accompanying FMS…
My medication can cause drowsiness, and I often found myself falling asleep during the day, sometimes several times. On the funny side, I might attempt an email to a friend and fall asleep, only to wake and see a ‘paragraph’ of random letters where my fingers had ‘stuck’ to the keyboard. I found the pain and tiredness were so bound together…with something like an email, I would have numerous stop/starts, partly because of the drowsiness and partly because my hands would get so painful once I made a start.
Unfortunately, tiredness and CFS symptoms come into play as well. Even with a really good sleep, after getting out of bed I would mostly feel like I hadn’t slept at all. I regret the drowsiness and tiredness also meant a lot of things had been started but not finished – with something like reading, I would either lose concentration and focus or just fall asleep! However, I am trying to accept things as they are. I have had to accept that I need to live within my limitations and let go of what I ‘used to be able to do’. My reality is quite different now, and my expectations need to be adjusted accordingly.
Mum and I had started to box up some things in the hope of moving house, but with my conditions worsening, that all came to a standstill. However, it is a pressing issue, as our family home is cracking even more and we hope to get out while it is still standing (on account of the way houses were built here 2 centuries ago on very reactive soil, the corners at the front of the house have been sinking badly). My wish is that we both find the strength and energy needed to attend to all that is needed to get the house ready to be put on the market.
I also had concerns over Mum’s health during the year. She had the renal denervation procedure in April, and follow up studies. Her blood pressure was not lowering and our GP was telling me that Mum was a high heart attack risk, which spun me out completely. Mum’s cardiologist ordered a series of tests, which all turned out okay, thank goodness….BP has improved slightly though lower readings would be even better. I still have concerns with Mum being in more pain herself lately, with arthritis and aches impacting on her too.
On the plus side, I have religiously maintained a pain/health diary. I was hoping to be able to work out any patterns or triggers (other than increased activity, there hasn’t been any clear trend – some kind of pain has been there pretty much every day, along with the tiredness). It did however help my GP to monitor my pain levels and medication. A few months ago, Lyrica became available on the Pharmaceutical Benefits Scheme, so I could finally afford to trial it. However, each time my GP increased my medication level, it seemed like the pain kept 'outsmarting' it. i'm now close to the maximum dose, and though there are still a lot of days when it doesn't do enough for the pain, and I need to supplement with other medications if it's bad or I have gone out, I feel like it is no worse than it has been at other times of the year.
I am also a bit more composed emotionally than I was this time last year. Christmas is the time of year my father died, when I was 14 – it’s a long time ago, though some years feel sadder than others. Last year was one of those – we had also had 3 bereavements in 13 months, so that contributed. As last year progressed, I also found myself concerned as to how I would cope emotionally without Mum, and physically as well, if she were no longer here. [For those of you who are unaware, I am the ‘end of the line’ of our family, and of our mother/daughter lineage – there were 5 generations of us when I was born. My brother (who lives interstate and has kidney disease) is the only other immediate family member left]. This time last year it was all very confronting, and I was very emotional and crying a lot. While I still have concerns as to how I’d cope without Mum, I am thankful that I am calmer at the end of this year than last, and doing my best to focus on the positives of having Mum in my life, and that we get along so well.
Other positives are that I managed to do some things I had wanted to do in the past 2 months: visiting Wendy when she was in Adelaide having major surgery; going out for a quiet dinner with Mum for my birthday, and for our Christmas lunch; and even catching up with a few local friends. I find myself getting excited when I manage to get out…and then need to deal with the ‘crash’ that comes afterwards! (After the flurry of pre-Christmas shopping with Mum and going out for lunch, I've had another reminder to pace myself, as my immune system is putting the breaks on me - I currently have a phlegmy throat and raspy voice).
Since I have found myself less able to be active, I have tried to focus on what little I can do. Praying for others including my Spark Friends, was often what helped me get through the worst times. Otherwise I would try to be the best I could be: the best daughter and as easy to live with as possible; and the best friend I could be, even if it was just listening or lending moral support.
On that note, thank you all for bearing with me and reading this blog. It has taken my all day, with a lot of breaks in between...and I am all 'done in'. Please forgive me for what will still most likely be sporadic connections on Spark – I will do my best to keep up with you as I can, and read as many blogs as possible. Many thanks for all your support throughout the year.
To all my dear Spark Friends, and all your loved ones, I wish you many blessings in the coming year. May happiness light your days and peace calm your nights, and may you all have many happy moments to reflect on at the end of 2014.
God bless you all.
Much love, blessings and big hugs,
Tuesday, December 24, 2013
Hello dear Spark Friends,
It is 9:30 pm here in Adelaide, South Australia, and Mum and I have not long ago finished our traditional Christmas Eve celebration, when we have Borsch soup followed by a fish/seafood meal with salads.
I wish all of you all the blessings of Christmas.
Many of you have been through great trials this year, in various ways. Thank you for sharing your journeys with me, and being an inspiration throughout the year.
For those who have endured personal losses, or missing loved ones who are away, please know I am thinking of you and wishing you a Christmas that is as good as it possibly can be.
For those who have the special joy of sharing Christmas with children or grandchildren, may their wonderment highlight your day.
Wherever you are, may the true spirit of Christmas light your day and night and fill your hearts with love and peace.
Blessings, love and big hugs to you all,
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