Bad joints. Ouch.

Psoriatic Arthritis (PsA)

I have been in increasing pain over the last six years and to be honest being offered a diagnosis was a relief. Because i also have bipolar and ptsd doctors took the road that I was imagining my pain.

 

          I am still learning about the disorder but it is clear to me that it is incurable and progressive and aggressively attacks joints. The worst of it isnt even the pain at this point. Its the fatigue. Needing help all of the time isnt actually as depressing as the pure exhaustion.

 

         Before this disease hit I was fairly active. Now I have had to curtail most activities and that sucks but its not as bad as constantly feeling exhausted. 

 

         I will document my journey with treatment but today i need a nap and my evening dose of cbd and codeine. I just want to sleep and actually wake up feeling like I have slept!

Looking for peace in a restless world

Hey people. I am victoria, but call me tori, only my dad calls me Victoria!

             Over the course of this blog I will tell my story, how I came by my diagnosis of ptsd and bipolar. How I have regained control and happiness in my life, and how I cope with the day to day challenges of living with a chronic physical illness.

             I don't write this blog looking for sympathy but to offer a window into the life of someone battling these disorders for those who want to learn more, and to provide a sense of community for others facing the same challenges.

           I hope you find my blog informative and engaging but most of all I hope it helps, helps people to find commonality in experience and to know they are not the only ones to have faced such experiences. Above all I want to show that there is help available and hope for the future.

             Have a great day, thanks for reading, and come back for future posts as I update my online accounts daily. 

Psychological education results in endless pieces of helpful paper.....

Back to school, imaginary cars, and mental illness.

Not regular school. Although I do study at home. Currently I am doing a mindfulness practitioner qualification.

           Part of recovery from chronic mental illness is education. In the UK many areas offer classes on learning to navigate many mental illnesses. Later in this blog I will be writing extensively about tips and tricks you can use to keep your errant mind in check.

          Education is essential. You cannot recover if you do not know what is happening to you. If you don't understand you feel more confusion, more fear. If classes are not available to you there are multiple self help books available and if you have the money or insurance, therapists.

            Reading blogs. Accredited medical websites and joining support groups on Facebook are free and easily available forms of education. They will help you feel less alone. Understand the bare bones of your disorder and why you (for instance) have to stir your cup of tea thirty times to feel comfortable.. Yeah. I do that.

           In the classes I attended I was given multiple handouts. The one above shows how to manage fluctuating energy and resilience levels. It simply explains a very wordy concept in one image. A picture is worth a thousand words.

            All of those pieces of paper, and clinicians, and medicines, added up to me.. Present day. A very different person to who I was when I was having thirty to sixty flashbacks a day, getting randomly angry (those feelings still bubble up but now I can manage them better) and feeling suicidal because my ignorant family was adding to my pain and suffering, not helping.  This is distressingly common. You don't have to be a good person to give birth. You don't even have to be a person.

             I can't magically transport you all into a psychoeducation  class, but I can share these magical little pieces of paper now and then. With their wisdom and nuggets of priceless knowledge. I can tell you how I learned to manage and recognise my mood episodes and flashbacks.

             Learn. Education is salvation for sufferers of chronic illness. Maybe you already are and that's why you are reading my blog. Maybe your diagnosis is fresh and you don't know what it means for you.

               Maybe you have, like me, realised that having a chronic illness is a bit like owning a car you never wanted. It 's not a great car. It breaks down. It takes maintenance to keep it on the road. And it needs refuelling often because for some reason even though you filled the tank yesterday it's like you are never running on a full tank.

                The kicker is you don't get a new car. Ever. You get the same crappy car with all its faults and you have to drive it for the rest of your life. But you do still have a choice. Do it up and drive a hotrod. Or make no effort to improve matters and  drive a dangerous rustbucket. There is always choice. And a helpful mechanic for those who know little about cars.

              

I should stop thinking "I should"......

I shouldn't "should"

I was handed this sheet of paper and didn't even read it for a month. Now there is something I actually definitely should of done sooner! 

         We all do this to ourselves. We write a laundry list of things we wish to achieve, large and small, in our heads or on paper. Everyone does it. But did you know it's horribly bad for you?

         I want to make it clear that I am not advocating doing nothing at all. But people need to understand that when they do this they are placing pressure on themselves. If you are mentally or physically unwell your "to do" list can become an unhealthy focus  in your life.

          Why is it unhealthy? Well, partially because if you are ill any extra pressure makes you feel less able to cope. But also because it sets you up for failure. If you don't get your list done you have failed at something. And you created the whole episode yourself which is the kicker. And some of us do this to ourselves every.single.day and then wonder why we feel bad.

           And it's not just housework. It's at work. It's in how we interact with people. Sure you need a structure in society otherwise all is chaos but that structure already exists. You don't need to create a list of tiny things you should or should not do socially because that will cause you to feel social anxiety.

           I am living proof, when I forget to tame my mind I often find myself thinking "I shouldn't of said that... What do they think of me? They must hate me" which is a lovely combo of "mind reading" which I will post about at some point, and that awful list of things I should and shouldn't do weighing me down and hurting me.

            The problem is the expectations. If we fail to live up to our own expectations we are far harsher on ourselves than we are on other people when they don't. We let them off the hook "x is only human" "we all make mistakes" and so on. But we do not extend that Grace to ourselves. We mentally review our horrible ten ton list and think.. I'm a failure. I failed. I'm useless.

            Being aware of when you are applying this rule to yourself is the the first step to breaking it. Because believe me, it is a bad rule. When I am having a heap of flashbacks and my joints are absolute agony spending all day worrying about what I cannot do is pointless. The better answer is to do what you can. And if that day it's nothing, then you have still done what you can. 

               Physical pain or mental pain is bad enough without flogging yourself relentlessly because of what you can no longer achieve. You are here. You haven't given in. That's a massive achievement. I know how big. On my bad days I can't do much other than sit on the couch and periodically take pain relief. But I am learning new things every day thanks to online learning. My bipolar is stable. Those things are achievements.

 

             The hoovering can do one today.

       

Argh!!! Nooooo!

Raw chicken and smoke alarms. Or... Weird ptsd triggers

What does raw chicken have to do with smoke alarms? It's simpler than you might think! 

 

        When my psychiatric professional asked me what triggered distress my list was stupidly long. You see, when you have ptsd you often go into avoidance. You try to escape the things that cause you pain, a natural response. Except....

         If you have ptsd this actually makes it worse. You avoid what sets you off religiously but this just ups the ante. The list of triggers starts to extend and you avoid more, and so it grows, through lack of confronting it (which I do not recommend you try without a professional to help you through it).

        I started off being afraid of certain places and men who looked like my rapist. But ended up being petrified of raw chicken. How?

 

          My psych explained it like this.

 

 

when you have ptsd you become hypervigilant (extremely alert to threats) and the closest analogy is that you have a broken smoke detector in your head. When it works it knows the toast is burning and may set a fire and goes off. But your smoke alarm is hypersensitive. So much so that if it knows the bread is near the toaster it goes off IN CASE it sets on fire.

 

             That's how I became afraid of raw meat. And air raid sirens. And being in a car on the freeway. And police sirens. And pictures of nukes going off. And and and....

 

              You see, raw chicken is literally the most dangerous raw meat. And I'm vegetarian. I don't even eat it. But my brain subconsciously processed that it was very risky and that smoke detector went crazy and the next thing you know I'm breaking a sweat in the chiller aisle.

 

              That's how are things like chicken and smoke detectors are linked. And for the record. I make slow cooked chicken for my family now. I might have to wash my hands a bit overly vigorously but I can bring myself to touch it without having a panic attack.

 

 

   

         

Hi!

Hi everyone..this is me.

Or rather its my knees.

they look pretty bumpy don't they..not great looking knees.

this is due to my auto immune disorder. PsA. Psoriatic Arthropathy (or arthritis). It is attacking my poor knees right now causing lots of inflammation. It really hurts. It makes it hard to walk. Its damaging my joints.

 

My knees don't always look this bad. Normally they look like fairly average knees. But my auto immune disorder is having a party at the moment so normal is not right now.

 

my solution? Long skirts!