Month: April 2021

I see the DWP are threatening claimants again.
They will it seems be monitoring people not only parking near their homes and filming them but also monitoring social media and recording conversations.

Now I have issue with this on many levels. Why? Well firstly chronic illness and disability means that every day is a challenge for people. It means that they have to adopt means of trying to live a normal life that others observing them will have no inkling of.

For instance I have various chronic health issues including crohns disease, out of control diabetes, neuropathy, Fibromyalgia, COPD, asthma, anxiety, depression and PTSD, to name a few.

My crohns means life is not easy, it restricts not only my diet but all my life choices. I need to plan journeys with toilets in mind, to be prepared for worse outcomes. At the moment I am in remission but that is due to taking extremely strong medication that damages my body and removes my immune system. One of these meds is listed as a poison.
Can you see that? I think and hope not.

My diabetes means I have to take insulin. I have to monitor myself all the time. My blood sugars can go from 2 all the way to 32 in the space of an hour. I can be having a hypo where they are dangerously low to a hyper where they are dangerously high. A hyper can bring on keytoneacidosis which is the very thing that ultimately killed my 35yr old brother a year and a bit ago.
The diabetes can not only effect stability, mood….swinging from happy to angry to agitated to frustrated, but also my consciousness. Luckily I can feel the signs of a hypo reasonably early on and treat it in a suitable way, which is the only reason I am still allowed to drive.
Can you see that? Sometimes maybe.

Neuropathy and retinopathy are both side effects of poor controlled diabetes. Why is it poorly controlled? Well the diet for that and crohns are at odds with each other. It means choices of whether I risk days, weeks or months of being attached to the toilet or I have the same periods of low and high blood sugars and keytones.
The neuropathy is nerve damage that causes pain which also means I get tired, sleep deprived, can’t stand the feel of clothing or bed sheets and do not always feel pain through damage especially to my feet. That can lead to sepsis and ultimately amputation.
The retinopathy is ongoing damage to my eyes. Can you see that? I doubt it.

Fibromyalgia, well what can I say about this? I thought before I personally had it that it was a made up condition. That it was in people’s minds. How wrong was I?
Fibro more than any other illness has stolen my life from me. It is this that means I am in constant pain, and I mean constant. Not a second goes by which is pain free but it’s how manageable it is at that point. Some days I can cope with or even without the fast acting painkillers I am prescribed such as codeine, morphine and oxy. Other days, the days you will not see me I cannot. I also daily take other meds that run in the background to combat the pain.
Fibro means I feel like I have lava and ice running through my veins at the same time. It is a constant ache, but the word ache does not come close to describing the pain.
Alongside of that, is exhaustion, it come in waves and can last a few hours to several weeks. There are times people do not see me for weeks on end because I am at best housebound. This exhaustion means I can’t think to do basic tasks from cooking to toileting. Housework becomes a no go.
Brain fog is another effect that hits me. I can be in mid conversation and forget everything I am talking about. Think how frustrating and embarrassing that can be. Think how hard that makes having the confidence to leave the house. Yet I do when I can.
Fibro means I cannot walk without pain, my muscles are weak and my senses can be dulled. The constant pain means a constant state of fight or flight within my body.
Can you see this? Occasionally maybe but likely not.

I have a diagnosis of COPD, but this along with asthma have improved with 10yrs of not smoking, of ensuring I have my meds with me, but even so I am often breathless and cannot venture off to places I would have loved in the past. It can be scary and when I get an attack which now thankfully is rare I can panic even now.
Can you see this? When I am having an attack yes.

Anxiety, well people truly have no understanding or often empathy for mental health issues of any kind. Anxiety is surely just being a bit nervous at times, flighty even? Anxiety can’t kill, can it?
Think again. Anxiety is horrific. It makes you over think everything. It is living in a constant state of panic, from seeing a car parked outside and imagining you are about to be attacked, robbed or being erm…spied upon by the DWP, to hiding when the mail comes and refusing to open any letters.
A knock on the door can build to terror and there can be days I don’t open my curtains in an attempt to hide from the outside world. It means sleep may not come despite not being able to escape from my bed. It can mean I do not communicate through suspicion of who may say what to who. Scenarios build in my head causing my vivid imagination to become the worst of enemies to my mind. Anxiety causes extreme stress, and yes stress does kill.
I try to rationalise myself out of anxiety but that then has an adverse effect upon my depression.
Can you see that? Probably not.

Depression, well its just being a bit down isn’t it? Just a simple need to pull myself together, chin up, think happy thoughts?
Sadly not. Infact all of the glib sayings are not only unhelpful but are damaging, so please think before spouting them.
Depression is not a state of mind, it is not a mood. Depression to me often becomes a huge dank castle of despair as real as my little bungalow.
It’s damp grey black walls covered in wet moss and grime. It is a place of no easy escape. A place where hope falters and despair becomes my only companion.
Depression can hit me at any time, it has even enveloped me in a dark fog simple walking across the market to get a bag of chips, and has meant I lost all idea of time and direction. People became shadows. Buildings disappeared.
I cannot ever hope to describe all of the effects of depression, because as with trying to convey the greatest of love, words do not quite cover it.it is as I said loss of hope, it is darkness, it is losing sight of any path forward or indeed back. Reality becomes enveloped within it. Time has no meaning and it finds ways to undermine any form of lucid or rational thought. Depression physically hurts, it brings on immense pain from within. It steals all positivity, all emotion save the dark ones. It drains motivation and at times, all too often for me and so many others it steals our worth from us, we see the world as improving if we are no longer resident within it.
It matters nought who cares or love us, yet we crave reassurance, warmth and contact.
Depression likely is the greatest killer of humans upon the planet and certainly has come close to taking me more than once. It is my constant companion and triggers without obvious cause.
I know this enemy all to well and battle it constantly.
Can you see it? For many no.

PTSD, well this was a direct effect of holding my departed brother in my arms. It is a constant reminder of the resuss room, of holding him in my arms and feeling his sweat upon my skin.
PTSD triggers every single day and though often I can pretend to ignore it the hurt is so hard to bear.
I cannot describe this beyond pain and tears. It has elements of guilt, of regret but in my case is a longing to have him back, to be able to tell him again I love him. To see him help his young son grow up and develop.
As I write this last part my eyes are welled and the pain once more has triggered.
This likely will never leave me but in an odd way does keep every detail of Robert clear in my mind. I just wish it did not hurt this much.
Can you see this? I hope not and hope you never experience it.

These are my personal reasons for being angered at the constant announcements of being watched, monitored and spied upon. Another reason is that this tactic of government to lay blame for economic ills upon the most vulnerable within our society again distracts from the very real and huge amounts the governments own corruption robs our country of. Ministers, their families, corporations and even foreign governments all benefitting from their dodgy dealings yet they seek to lay blame, instill hatred against the sick and disabled making them feel guilt and self loathing for trying on their better days to have some scant enjoyment of life. To make their existence to amount to more than wake and sleep within the prison of their illness.

So yes on my better days I may choose to live. You may see me as being ‘normal’, you will not see my pain, my exhaustion, my fear, my anxiety, my despair, my trigger. But I assure you it is all there, it will be simply upon this day, the day you see me I will be hiding it better than others.

Jonesy.