“Get up, stand up. Stand up for your rights. Get up, stand up. Don’t give up the fight”…… Bob Marley
I’ve written for this blog before, so was more than happy to do another one.
Right, where are we now and what is happening to me?
Well, let’s start with the health side of things, as they have moved along since last time. Here’s a quick reminder of my medical conditions;
- DIABETIC AUTONOMIC NEUROPATHY (GASTRIC, CAUSING UNPREDICTABLE AND SEVERE DIARRHOEA), GASTROPAERESIS (CAUSING UNPREDICTABLE AND SEVERE BOUTS OF VOMITING), DIABETIC RETINOPATHY, PARTIALLY SIGHTED (LOSS OF PERIPHERAL VISION IN BOTH EYES AND SOME CENTRAL VISION IN LEFT EYE), HEART CONDITION, CHRONIC KIDNEY DISEASE, VITAMIN B12 DEFICIENCY, ANAEMIA, HIGH BLOOD PRESSURE, HIGH CHOLESTEROL, UNDERACTIVE THYROID, CHRONIC TIREDNESS DUE TO COMBINATION OF MULTIPLE MEDICAL CONDITIONS, ASTHMA
I don’t do this for any other reason other than to just jog memories, although the more astute will see there are a couple of bits of info missing from the list, that is because there have been some changes.
Firstly, there has been an awful lot going on with my kidneys. I have a fantastic renal nurse who has been helping me with lots of things. What I am moving closer to saying is that I am going to be starting dialysis soon. I first have to have an operation to raise the vein in my arm. I could not have the “normal” operation as my veins in the lower half of my arm are useless, and there are none suitable for doing this with, so I have to have a more complicated operation, but it means I will have to start dialysis 6 weeks after this has been done, and another vein may not be available. As my renal nurse said “You’re damned if you do, and you’re damned if you don’t”. How did it make me feel? Daunted and shocked. Like a rollercoaster ride, full of ups and downs, hurtling towards the inevitable. It had been sat in the back of mind for a while that I would need dialysis, I just didn’t expect it to be at the front of it so quickly. I am preparing myself for it, and I will cope with it, because I have to.
Also I have to have an angiogram as I have a heart problem. All I know at the moment is that my heart is not being supplied with enough blood, so I cannot undergo an operation that requires deep anaesthesia. My renal nurse, (there she is again) has said she wants me on dialysis before the angiogram as it is 90% certain it will make my kidneys worse as the dye that is used damages them further, and she wants the function that I have left protected before that happens. I don’t like the thought of it, but unless my heart gets sorted out, I can’t have the transplant operation and that’s what it’s all about, after all. But, in the meantime I still have poorly kidneys. I was supposed to be having a double kidney/pancreas transplant, but it has now been decided to try for the kidney transplant first and do the pancreas one later. This came as a bolt out of the blue, so going to see the surgeon for an explanation of this, waiting for an appointment for this. So, currently the health road is still very much uphill, but it looks like there is a light at the end of it.
Now as for the benefits side of things. That’s become a thorn in my side.
My ESA is being stopped……………
Now, I have turned over in my mind how they can do this to me. Where it is going to leave us money-wise and what we can do about it?
The answer is; I don’t know.
I am no entitled to a penny more due to having a husband that works too many hours and brings in too much money.
I am worried and frightened, I do not see how they can just snatch this away from me. I am chronically ill and I am never going to get better, not even with the transplant will I feel better, all my conditions cannot be magically cured.
Also, I sent an ESA off a little while ago (February) and I have just forwarded lots more information that my doctor has compiled including some of my medical records and details about me going on dialysis and my other debilitating conditions. I sent this Special Delivery, I have tracked it and it has been received.
I fail to see how they can place someone who will be on dialysis, and in hospital 3 days a week with recovery days in-between in any group other than the Support Group. After all, where can I possibly work or even get involved in “work related activity”, anybody? No I thought not…….
That’s because what the government are doing is totally unbelievable. Stripping the most vulnerable of the essential benefits they need. No thought for the effect it will have. Just throw them on the scrapheap. Don’t worry if they can’t feed themselves or heat their homes, or pay for taxis to take them places because they cannot walk anywhere. No, that doesn’t matter, they are leeches on society.
The thing is, we are not. We need this money to have some quality of life, not scrimping and scraping to get through one month to the next, not being punished for something we have not done.
Nobody wants to be disabled or chronically-ill, it is horrible. So ill that you cannot even manage to make a drink, or get out of bed in the morning or even to enjoy what’s going on around you.
After 22 years of work, up to a stage where I was so ill I was away from my job, more than I was at it, my company had to let me go. I was costing them more money to pay me for being away from work than at work and I was only working 2 days in the end. I paid my NI for all those years, and yet the DWP suddenly have the right to call you and tell you that your money is being stopped because your year is up and you haven’t paid enough NI contributions. I’m sorry, but I have.
They can’t give you any advice on what to do next apart from “apply for income related benefits or go on jobseekers allowance.” Okay then, show me where the jobs are and which employer will take me on then? They can’t, and so we are back to square one again. How do we cope with this loss of money? They can’t answer that, apart from giving their very basic, useless and empty words of advice.
Read the words from the Bob Marley song I shared at the top of this article. And remember them.
We need to be passionate about standing up for our rights, and if we can make enough noise, and get enough people to listen then we can overturn the inhumane changes this parasitic government have made. If nothing else, we do still have hope and our rights on our sides………………..