I must first say sorry because I haven't written for so very long. This has been an incredibly hard year for our family and I have drawn all of my courage and strength inwards to keep us all going as we have supported one another through the year.
At the beginning of the year I was 3 days shy of 7 weeks in hospital, I went in because I was starving, It had been over 6 weeks since I was able to hold anything down and in the last few weeks before admission even water wasn't staying down. Whilst I was in hospital I had double pneumonia twice and very nearly didn't pull through. Whilst I was in hospital my beloved Grandmother passed away, whilst I was my most unwell with the pneumonia under the care of a nurse from ICU and I wasn't able to go to her funeral. Now I know it is nothing in comparison (it really isn't) but 2 weeks later my lovely 3 legged bunny Zapper died and another 2 weeks later my wonderful cat Toby, whom I considered my guardian angel and one of my soulmates in life as he also lived with a chronic disease (FIV) and came into our lives (after a life on the streets) the very week I first became disabled passed away. My heart broke when my Grandmother passed and just kept breaking.
All of that in itself would have been traumatic enough but in January my husband started to notice he was having to go to the toilet all the time. Off he went to the GP who told him he had an enlarged prostate and put him on some medication that you had a to take for a month before introducing another medication which you had to take as a combination for a month and then be on for an additional month before you can state that your symptoms hadn't improved or are worsening (he got worse continuously) In June he was diagnosed with bladder cancer and we learned he had 6 large tumours in his bladder, he was booked in for surgery but they couldn't do it until August. We were told that they would remove what they could but may need to take the bladder which he would have to travel to a different hospital for. All this time we didn't know if the cancer had spread or how aggressive it was. When the surgery came round in August he had 8 large tumours and we were under the impression that they had taken what they could. A month later in September we sat in the consultant's room only to be told that actually they had only removed half of one tumour because there were so many they were just going to refer him to the hospital just over an hour away to have his bladder removed. I cannot put into words the stress, fear, torture and devastation all the 'not knowing' does to you, as with any health crisis this has brought our family closer together but it has been horrendous. Just horrendous.
When we went to meet the new consultant the old hospital had sent over no notes on my husband and whilst at the time this was really frustrating it turned out to be a blessing in disguise. Up until the day of his surgery we didn't know if he would be removing tumours or need to go on to take the entire bladder but he vowed because of my husband's age he would do all he could to save his bladder. In an hour and a half he removed all 8 tumours and although we won't know until January if there is any regrowth his prognosis at this point is really good!
I just wanted to explain that before I continue because I'm sure it will help you understand the impact of my words.
I don't like Theresa May and I despise the Tory government. Look, I grew up in a Labor household the granddaughter of a welsh miner and the daughter of teachers (who lived and worked through the 80's and Maggie's rein but this distaste (although the word is hardly strong enough) for our current government has nothing to do with my upbringing. This is personal.
As you know if you read this blog I live with a debilitating chronic disease, chronic pain and my husband is my full-time carer. I know we are incredibly blessed to live in a country that has a benefits systems otherwise we would be out on the street but the level of corruption in our government is disgusting, for instance Boris Johnson ''forgetting'' to declare $52,000 worth of income, that is what I call corruption. (Please excuse the dollar sign this laptop doesn't have a pound sign! We brought it a few years ago and it was refurbished, I can't say I thought to ask to look if there was a pound sign!)
There are more people using food banks then ever before and yet the Tory party can only talk of the positive handle they have on issues of poverty and homelessness. If they talk about it at all.
They make the rules up as they go along and can cancel their vote and yet deny ours. Brexit has thrown this country into turmoil and sadly it is our children and grandchildren who will forever live with the fall out.
Theresa May has been caught in almost as many lies as Donald Trump and yet her precious party won't put through a vote of no confidence.
This though, this is personal. In the last 3 years despite being granted PIP for 3 years I have been assessed and reassessed 3 times, the first time there was no disabled access into the building but we were told if we didn't attend the appointment our benefits would be stopped so my husband had to carry me into the room. Apparently disappointed that they were unable to reduce my points the last time they insisted on sending a nurse out to my home. The invasion of privacy is mind-blowing and I can honestly say, as for anyone living with chronic disease this constant speculation about your illness does nothing but compound the feeling that you aren't good enough and should be able to work through the agony, illness and dislocations.
I am meant to be under the care of 2 consultants in London and travel between 2 and 4 times a year however we cannot afford to pay for the hotel or train fair and whilst we can get the train fair back you have to pay for it upfront and we simply do not have the money.
We have to use a food bank and countless times this year have quite literally had not a penny in the bank. This is the reality for so many disabled and chronically ill people. My husband and I do not buy new clothes so that we can keep our daughter in new clothes as she grows. My husband and I do not spend any money on hobbies and alternative therapies for me so that our daughter can have piano lessons and as a treat we can take her to the cinema or swimming when we can. I do not know what it is like anymore to not worry about money. I do not know what it is like to not be afraid that we can't afford this that or the other and Lord protect us the day our car finally gives up because we won't be buying a new one that is for sure!
Our weekly family treat? We meet with our wonderful friends in Morrisons cafe on a Friday night for dinner because the children eat for free and as I can't eat (I am tube fed into my stomach) we only have to pay for my husband's dinner which costs less then a fiver.
This is hidden poverty, it is being able to pay your bills (although we have to use all my PIP which is meant to help to pay for me to manage my condition) but have absolutely nothing left over.
With Christmas fast approaching this year we have had to do the ABSOLUTE bare minimum, my husband and I aren't exchanging presents and we are receiving a Christmas food hamper from our local church (I was actually part of the original team that set the bank up never thinking I would become so reliant on it myself.) We had to borrow money from family to buy our daughter presents. I have to choose between food for my daughter or presents for my friends. I think you can guess what has won.
I have honestly put off writing this for so long because here's the thing that the Tory government have done under Mrs May charge. They have compounded the shame that comes with poverty, they berate, they target and victimise those living in poverty and it is for all of those reasons that I haven't shared my story any sooner but my God something has to be done and whilst I am sure this isn't going to change the world if someone who politically sits on the fence or doesn't choose to vote reads it and changes there mind then I have to write it.
Already I am looking forward to January as my daughter will be turning 10 but December's PIP, which covers the bills must pay for that Birthday.
It is so easy for people to fall into the trap of complaining about Christmas shopping but I implore please don't. Everything screams at you at Christmas "buy this!" but for the people who can't it is heartbreaking. I must admit I like to make donations to charity's in people's name rather then buy physical presents (haven't we all got enough stuff?) but that is my Christmas shopping, that lovely warm feeling you get when you know you're all done. For someone who is living on PIP or a single parent on universal credit this is a really really hard time of year.
That is why I don't like Teresa May, not because I am greedy and want loads of money but because she is robbing people of life experiences, she is robbing people of security, she is robbing people of happiness, she is robbing people of their mental health, she is robbing people of laughter, she is robbing people of adequate food in the house all whilst walking around in shoes and an outfit that cost hundreds of pounds!
Poverty in the UK doesn't look like it does around the world and for that we are blessed but that doesn't mean that it is any less real or that people don't feel it's effects. It doesn't mean mother's don't weep because they can't afford to feed all their children and pay all their bills, it doesn't mean that men and women aren't sleeping rough on our streets. We live in a Western society with western poverty and that isn't being acknowledged at all by our government.
Theresa May has never experienced poverty nor does she take the time to try to understand it, to visit it, to try to make positive changes to prevent it. She is soul destroying and I for one think she should be utterly utterly ashamed of herself.
