I just can't get out of here but at least we know why

I think I am feeling OK and go to get ready to go out and then find out I am too breathless to go as soon as I start moving around or else I try a quick lie down to regain some energy and fall asleep before I know it or I can't bear to drive any further so just end up at Golden Beach and pay full price at the local SPAR supermarket there.  It is certainly not the way to save money and gone are the days of being able to shop around according to what was on special where.  The same thing is happening for a tobacco run, ie. not making it to Rainbow Fuel where the cheapest tobacco is.  It is $4 a packet (the new tiny 25g pouches which aren't really that new) more at Coles.

Pain isn't helping.  I can't get on top of that either with the tiny amount of oxycodone I am on (in combo with naloxone) so my mood is pretty dead pan and no doubt I would be cranky if there was someone here trying to push me into "trying harder", "going for a walk just to the end of the street, or simply not understanding. But I will say it again......I feel like I have got the flu and it is so hard to push through that when you know you might end up worse off because you didn't rest.  I'm wondering if I get enough rest even though I don't do anything much except potter around because I still resist going to bed and just doing nothing.  I am always working on something even when my brain isn't working efficiently enough to do it properly, I have to keep engaged or else the pain will overwhelm me and it is only when it does that I lie down.  The horrible part is that when I wake up again I am usually in too much pain because the pain killers have worn off while I've been asleep although there are still times that sleeping will help reduce pain levels in the long run even if I wake up sore and wrecked for the first 2 hours.   It's also because my body creaks and groans into the new position of lying down and I can feel things either click into a different place as gravity seems to contract me into myself and things hurt.  I've always had pain from moving - that is easier to accept but I am also still feeling like I am putting things out in my back and neck and hearing things click in and out or just click whatever way and I know I have grainy knees and similar crackles in my neck just when I turn my head even when I am not attempting to lift my arms.  Just taking a top off the right way by crossing my arms before lifting the garment over my head, is enough to ruin the whole day.  If I get a migraine then it can often mean the end of my plans for the day and it seems like I have been planning to get out of this house since last year but can't get further than Golden Beach.  I have not even had a swim this entire Summer which is soon over.

I am glad I managed to talk Ange into getting out for her swim before Summer was over but she is confined for different reasons.  The thing is that she did it thinking that I was going to do the same thing down here but I didn't.  "Good idea woman" she typed.  I tried but by the time I was feeling half alright for it, it was cool and after dark and all I managed was another "look" at the water with a paddle for me and Milo thrown in after midnight so it wasn't even the same day that Ange went.

The Gold Coast team are moving along in leaps and bounds with regards to research into Chronic fatigue syndrome as defined by Canadian Consensus Criteria which means that at least post-exertion relapse is required for being defined as having CFS aka ME more correctly when using those criteria. Anyway they are discovering lots of things about people with ME/CFS (which is now more commonly known as CFS/ME - huge contribution to our understanding thank you researchers) thanks to grants from the Queensland Government and Fox I think the other main one is.

Here is an excerpt explaining a bit of it but I am not at all familiar with calcium ion transport in the body so it does not mean enough to me other than my genes should be able to confirm it if I knew which ones to look up on my genetic testing but I don't.  I think they are still picking out the best genes to look at.  Here is the excerpt anyway:

The breakthrough came after researchers from Griffith University identified that patients with CFS/ME were far more likely to have single nucleotide polymorphisms - DNA typos - in the genetic code for certain cell receptor.

This cell receptor is known as transient receptor potential melastatin 3 (TRPM3), and in healthy cells it plays a crucial role - transferring calcium from outside the cell to the inside, where it helps regulate gene expression and protein production.

But in several peer-reviewed papers published by the Griffith team last year, they showed that in CFS/ME patients, something seemed to be going wrong with TRPM3.

In the latest study, the team looked at blood samples 15 CFS/ME patients and 25 healthy controls, and found that immune cells in chronic fatigue patients had far fewer functioning TRPM3 receptors than those of healthy participants.

As a result, calcium ions weren't making it inside the cell like they should be, meaning cell function was impaired.

What makes matters worse is that TRPM3 isn't just found in immune cells. The team tested its presence on immune cells as they're easy to access in blood samples, but the receptor is found on every single cell in the body, which not only explains why CFS/ME has been so difficult to diagnose, but also why it's so severe.

"This is why it's such a devastating illness, and why it's been so difficult to understand," one of the researchers, Don Staines, co-director of Griffith University's National Centre for Neuroimmunology and Emerging Diseases, told ScienceAlert.

"This dysfunction affects the brain, the spinal cord, the pancreas, which is why there are so many different manifestations of the illness - sometimes patients will suffer from cardiac symptoms, sometimes it will be symptoms in the gut."

It's something that's confused doctors for decades, and has lead to much of the misdiagnosis of the condition - but the new research suggests that all of the common CFS/ME symptoms can be explained by these faulty calcium ion channels.

"We now know that this is a dysfunction of a very critical receptor and the critical role that this has, which causes severe problems to cells in the body," said Staines.

To be clear, the research is still in its early phases - all we know for now is that these dysfunctional TRMP3 receptors are involved in the disease, and there's a lot more work to be done.

But Staines suggests that the involvement of TRPM3 receptors could explain why so many patients appear to experience CFS/ME following a traumatic event or serious infection.

The class of receptors TRPM3 belongs to are also known as 'threat receptors', because they're upregulated when the body is under any kind of threat, such as infection, trauma, or even childbirth. 

Staines and his colleagues predict that it's this upregulation that causes the the faulty genetic receptors to get over-expressed and then take over, messing up the calcium transfer in a range of cells.

For now, that's just a hypothesis. But it's a much-needed starting point for researchers to look into further.

Excerpted from http://www.sciencealert.com/one-of-the-biggest-myths-about-chronic-fatigue-syndrome-just-got-destroyed

Christmas is finally over for me

Brett and Kerry finally came to visit me to get the presents that I have been trying to give them and Cohen and the girls Kalisah and Lexi.  I did not go to HB because I got the message that Scott was not welcome but Scott assumed he was invited.  He said Roger told that's where he had heard about and short of telling Scott he wasn't invited and go alone, I decided to cancel the plans especially since Brett and Kerry informed me that they would be down to the Sunny Coast sometime over Brett's 2 week break and that they would bring Cohen.  It didn't happen.  Neither did I see them on Brooke's hen's night which they came to Caloundra for, nor Nick's buck's night which turned out to be a  Coochin Creek camp-out that Nick abandoned and went home leaving his invitees behind.



Anyway it is Mr and Mrs Nick Alderton now because Nick and Brooke were married yesterday and she has just found out that she is pregnant with number 2 for her and Nick.  Riley, a son to Nick from a previous relationship was in the wedding party so he sure has grown up.  See for yourself in the wedding photo. Anyway their relationship will never be perfect because Nick does things that Brooke doesn't even know about.  

I briefly met Brooke's mother last night because out of the blue at about 9:15 I was asked to pick up Brett and Kerry from the reception at the local Golf Club function room, but I did not know it was  her at the time but I should have guessed by the build which Brooke has developed since having her first child, the gorgous Ellie who looked like she was about to tackle the steep stairs which is why I ended up on the inside of the glass sliding doors.  She had on a big grin and was heading straight for me still outside waiting.  Needless to say it was past 9:40pm and Brett and Kerry finally emerged after the bride and groom packing up their cars so at least I got to congratulate them.  Nick and Brooke got married at the Bushland Botanical Gardens but I was not well enough to go and peak from a distance like we had planned - we being Scott and I.  Scott cancelled probably due to lack of petrol but he was not invited to the wedding.  It was Scott and Nick who were the original friends I thought but Scott has not been included since he went straight for lack of a more obvious reason.  Brett on the other hand has had little to do with him since he left the coast but ended up being best man anyway and Brooke latched on to Kerry so much that Kerry ended up being a bridesmaid and helper until the last minute when unbeknown to her she was expected to spend the night with the bride and came here to be with Brett who was staying here over night and that is how come I got to see them after all this time.  I had even left the Christmas presents sitting out for long enough to annoy me before I packed them up into a bag still hanging around the house.  I did not even dismantle the Christmas table fully until my Christmas was finally what I could call "over". That was yesterday.



The main thing that stuck in my throat over the whole Christmas debacle was Cohen not receiving anything personally from any of us.  Eventually Aunty Debbie's money was turned into a gaming voucher and delivered to his new computer in his room at Brett and Kerry's but he does not even live there.  I did not know that Stacey has had him closer to full-time than they have ever since her mother arrived to live in Harvey Bay.  She has a nice pool they can go and visit and I bet Cohen missed the pool greatly when they left the Domain village unit.  Cohen loved it  at the pool and all the freedom he had inside a gated community. So did Brett love taking Cohen to the pool daily until Kerry came to live there with two of her girls. Brett and Kerry became engaged on their 2 year anniversary when Brett popped the question.  It was a surprise for Kerry but it wasn't half obvious that she was thinking along those lines via her facebook posts for months.



Cohen should get his Christmas present from me and card with money in it from Mum (his great Nana) any day now when Kerry takes Cohen to school or from I guess. She has a new Praedo 4x4 to do it in now which was quite a big beast parked in my driveway.  Brett still has no license and can't even get it back until he pays all his SPER fines and it has meant that Brett has not been able to duck away any time by himself to come and visit Mum while he has been down this way but at the same time, when he is tired and he wants to go home, he does not want Kerry to bring him here at the end of a travel weekend either.  They both dislike the Sunshine Coast and would be quite happy for me to move up to where they are.  Brett complains about all his friends and how they have either changed too much or not grown up.  Even Nick.  In fact Nick has done some pretty bad things to Brett during the times that they are both drunk or drugged.  Apparently he caused Brett to have a seizure recently after choking him for a bit too long.  I'm disgusted.  Apparently Brett also has arthritis in his knees just as an aside.



But Brett's behaviour is still very childlike when he has been drinking despite him having a good work ethic the rest of the week. He has a live video of him working on Facebook posted just this week. I was horrified when he discovered that the electronic usb cigarette lighter that I gave him for Christmas was a ferocious weapon which he would not stop playing with....electrocuting himself over and over with almighty jumps.  The current even went through a carrot (the one hanging around for Milo to chomp on) so when we (Kerry and I) were yelling at him to put the thing away and use it for what it is meant to be used for (a lighter that the wind can't blow out) he kept begging us to let him do it on us!!!  They say it is the volts that jolt and the mils that kill so maybe it has some safety profile based on that but who knows these days.  It is a weapon that a woman could have in her purse if she could just press it on to her assailant and push the button, she would cause quite a decent moment of time when she could attempt to escape.  It would have to kept fully charged in your handbag rather than forgotten about.  It just so happens I bought myself a pink one so perhaps I will keep it in my bag.







Anyway as far as my pain levels and things working out with the times that things actually happened, they worked out OK.  By the time they arrived after 1am Saturday morning I did have the housework done enough after having to take naps in between.  I am always more alive at night time anyway so getting a call last night asking for me to pick them up (it was Kerry who actually asked) turned out to be OK too. Anyway, I am glad Christmas is over now.  Now you know why I hate Christmas these days.