Getting A Service Dog.


Have been away for a while running a regime of three week cycles - toxins that kill healthy cells pumped in and roll through horrendous side effects for the the rest of the cycle, medications to reduce side effects which have their own side effects. Hair is gone, face is round like a balloon, skin is breaking down into sores, constant lesions inside my mouth that make eating a bitch, blood noses all day every day, clogging into clots while I am asleep and small infections developing all over the place. I have gained 12 kgs of fluid and have no appetite. I sleep like 20 hours a day, getting up to drink, take K out for breaks for five minutes here and ten there. She's stressed out so have been sending her to a trainer who has two old dogs she can boss around and steal their beds lol...

Brain fog. I my brain. I have difficulty remembering what the hell broccolli was called one day whilst staring at it for possibly a minute? I write everything down, because my memory has taken a big hit. Migraines, stealthy low grade headaches a constant reminder that I do have a head and it has got a brain that doesn't like being steeped in poison.

I'm still managing to hang on to my job but probably only because it would be hard to sack me, being a government job, and not a great look for the area I work in. I think they are amazed each day I log on. I have a touch of gallows humour when they are like ultra politically sensitive... neither seems okay but it never would be I guess. Nobody knows what to say and so I have told them over and over to not say anything. I am okay with that but there is this imperative that they must say some inane comment that is supposed to be interpreted as meaning they understand and this is truly not something any of them has experienced themselves or in their families so it's just okay, not to understand and it's also okay, not to try to pretend to understand and end up making up shit that isn't real and leaves me with ten seconds of silence whilst I scramble for the hundredth time to say hey I am here, I am working, I am okay today... or now... so what's going on that relates to work today - lets talk about something we can all do?? The work I do manage to do, in=between naps is worthwhile but obviously not anywhere near as productive in terms of hours. I just have to log off and lay down. My body is at war, the toxins, the disease and my every failing immune system are having a fight. Some days I feel like I'm winning and other's nowhere near.

The nausea is not so bad because the drugs are good these days I am told and they seem to be holding for me. But the fatigue is staggering. I have not sat, laid down on the couch or bed so much in my entire life. My muscle mass is diminishing, I need to start walking again but I am exhausted standing for five minutes waiting for the kettle to boil to make a drink.

I am not allowed to swim, my most wonderful exercise that I loved the most. Infection risk is too high. I am devastated because even just holding onto a kick board and using my legs to push myself along would have massive benefits for my back and muscle strength/mass. I ask over and over like a child, and they patiently explain that it is not possible and would be life threatening all on it's own. They gave me these stupid rubber coloured bands and told me to do chair exercises with them... green - easy, yellow - medium and red hard. Omg I have not even taken them out of the stupid bag. I am my own worst enemy I swear.

They have rehab at the hospital where if I could go, I'd be able to learn a bit more but it is on one of the few days I can put in a full day of work. Without that day, I'd definitely lose my job and so I cannot got to rehab.

Infection control remains a constant concern. I am still wearing N95 masks whenever I leave my home and that is not often. I am in my own little permanent lockdown with trips to the doctors, nurses, pathologists, radiology, hospital in a crazy loop each week or whenever my diary says I go. The rest of the world are not wearing masks and yet to the best of my knowledge covid is still here as is a mighty big influenza season. I have had my fourth dose of vaccine and will probably have a fifth in a couple of months.

We have major floods all around at the moment and unless this latest weather front brings me undone, I have truly dodged a bullet with not being flooded. Most other places have. I am not sure exactly why my area didn't flood, maybe the ground was really thirsty. Tonight I saw light rain falling again but it was pooling quickly on the surface so we don't have dry ground anymore. I have had flash floods go past but they didn't reach my side and quickly abated. My family has hundreds of head of cattle stranded inside a flooded river locked property. For decades, just like funerals, when it floods we all gather and swim the cattle out, calves slung over the front of saddles, pushing the herd on to the stock routes. I have many siblings, they will have to work it out without me this time round... and I am almost past caring and cannot worry about the rain. Not one moment of worry ever stopped one drop of rain. If it was me making the big decisions, I would have transported the herd out about two weeks ago and set the cattle down on dry land and saved the drama of swimming them out. But, most farmers are eternally optomistic and nothing has changed.

I haven't told many people I am sick. I told my sister and though she lives far from me, she's been calling me to see how I am travelling. She doesn't know what to say but she is a former intensive care nurse and very scientifically minded so she doesn't need things spelled out. I've now told my sons and both had polar reactions, one freaked out completely and I was trying to calm him down, soothing him, and the other was hyper positive and off the charts with silly platitudes like 'think positive' and you will overcome the disease lol.... I've told him to google it because it is insulting to be told a positive mindset can cure a disease. I didn't get this disease because I had a negative mindset, in fact for the first time in two decades I was kicking some major life goals, bought a home, renovating, got my beautiful dog, got a job, bought a new car... finally... I was leaving long, glacial bouts of depression behind - not entirely but more often than not I swung my legs out of bed with purpose... and now this disease. Negativity was not the cause and silly positive notions are not the cure. He's since googled it and has stopped that stuff.

My mother now knows because I trusted a relative with my health information and she promised me she would not tell a soul. It is my private health information and it is my preference to inform those I wish to, not others to decide for me. But, they say to keep a secret, a secret is for only one person to know. And that's true because she told her sister who then told a closer relative of my mother. So, my mother needed to be informed before it was dropped on her via a gossipy phone enquiry which would have devastated my mother. She's not good with bad news. Anyway mum has now told me that she cannot care for me, she cannot support me, she cannot talk to me about it, she cannot do anything but more importantly straight on from that, she asked me who would be? I let her off the hook by telling her that I had no expectations of her caring, supporting or talking to me about my health and in her eight decade of life, this would seem reasonable to even the worst sceptic. And I also told her I had no idea what or who was going to look after me when things got really too hard for myself... probably hospital and hospice or end of life care places. Idk... I need to look into it so I qualify for somewhere decent when that time comes. That was an enlightening conversation.

I might defy the diagnosis and prognosis and live to be grumpy old woman = more so than I am now. That is the goal and why I have another four cycles of this therapy to get through. Then I start immuno-therapy next year after I recover a little bit, Managing each cycle is like carrying a rock up a mountain only to tumble down the other side and find a even bigger climb ahead. I am so tired but each cycle whilst it is killing off good, perfectly normal cells, is also, hopefully killing of diseased cells. That's the 'silver lining' I tell myself in the hardest moments. Smash you little f**ckers right out and never come back.

Thank you guys - for your lovely words about me and my time here with you on this board. I have watched you all do such amazing things with your lives, battling one of the most insidious mental health conditions we have. You all endure and strive for ways to manage and resolve every problem that comes along with courage and tenacity, humour and pathos, humbleness and pride. Crazy angry moments stirred through with triumphant joyful perspectives. Argumentative, robust, and intellectual and thoughtful and kind. The ptsd does not always win the day and I see most of you take away more wins than losses over the very long time you and I have been here. I have learned so much from you all and I have leaned on you many times and I have kept coming back because you offer comfort and support every time. How a group of people over the internet could become one of my most trusted sources for help with pstd is more amazing than you will ever know because I lost all of my trust to in real life human beings through the circumstances that led to my acquiring of ptsd. So thank you doesn't seem enough but I am thanking you all anyway.

Not sure when I will be back, time is blurring for me at the moment. Take good care of yourselves. x


Thank you for trusting us with what is personal & difficult.

Fatigue really IS what the flying f*ck ((I would swear more but appear to have to sleep 3 times before I can finish this sentence, because you know, woke up and had to pew, woke up and forgot what I was saying, woke up and… that’s RIGHT! This f*cking nonsense can kiss my OMFG. I just don’t have the <nods off> ))



Thanks for checking in! I've been wondering how you were doing. Once again, I wish Shimmerzville was a real place, where we could help each other as much as we can, and not more than that, and no one would have to deal with stuff alone unless that was what they really wanted to do. (Can't remember if you were here for the Shimmerzville thread. If you weren't, it was one of my personal favorites. Check it out someday when you feel like reading.) Wishing you good luck for the dealing with all you're dealing with. Hope to see you around here again!


Hello friends, belated Merry Christmas or holidays or whatever you do this time of year. I hope you are all well or doing something nice for yourselves.

I am sitting in my house half way through the day and still in my pj's - debating about returning to bed. The fatigue is still a prominent feature of my life but I am sure I have noticed that it is not crushing me the way it once was.

It's super-hot outside and it is New Year's Eve day here. Tomorrow a new year will commence and I have a few thoughts on that. First I hope it is a lot better than last that - strike that let's say the last three years. My father's death, Pandemic, floods and disease - so I am hoping for something a bit less dramatic. Actually I am hoping I survive the year mostly. I was grateful to survive to Christmas. Without the surgery and the treatment I would be either dead or near to it....

I finished my treatments - just.... The toxicity of the drugs had to be reduced because they were making me too sick and my doctor said it was important that the cure did not kill me. I thought that was important too. 😌 He also increased my steroid doses and I am here to declare that whilst they are wonder drugs in one sense they are horrendously evil drugs at the same time. The side effects are still with me and will take a long while to abate I am told.

I have collapsed veins on both arms now and next week I start infusions of immunotherapy... I don't know how they will find any viable veins anymore because the last two treatments took several goes each time. Every three weeks for a year - this new treatment. I was given more information on them and the side effects read like an A to Z list of nightmarish problems. I am told a good percentage of people experience nothing too bad so am holding out that I will be one of them.

I have taken a couple of weeks off work - just could not keep it up and had a few precious days of annual leave accumulated.

I am still in self-imposed lockdown and rarely venture out.

My little K is doing a sterling job of looking after me. She sleeps when I sleep, sits and watches me when I am awake and we play a few games now and then to break up the day and night. Without warning she rises from her basket and flops on my feet and somehow I end up massaging her belly with my foot.

My hair is growing back. It is now approximately quarter of an inch long in most places and a little longer in others. It didn't fall out evenly and the final bits were buz cut. Some parts have not resprouted though so I am waiting for more to grow. I miss my hair.

In a few weeks I will be permitted to return to the pool so long as I handle the new treatment okay and the current surge of covid doesn't become any worse.

I hope you guys are all okay. I have to go and have a sleep now. I know that a lot of you may be experiencing really bad weather - my thoughts are with you and I hope you come through it okay.

Take care