Just a couple of months after I met my partner, I went away for a week to do some voluntary work.
During that week, I joked about being “halfless”, which is to say, missing my other half. The thing is, it wasn’t a joke. We both knew pretty much right away where our relationship was headed. We were just at the right stage in our lives and those lives slotted together naturally very well.
Steve has changed my life and, in a lot of ways, I couldn’t be happier. In one way, though, we really struggle.
For those who know us personally, you’ll know that Steve is sick and unable to work. I don’t think most people really understand just how sick that is, however. He spends most of his day asleep, exhausted from seizures, fluctuating blood levels, and mental health issues. The hours he is awake, he has no energy, no motivation, and now, very limited government help.
Since moving in together, I have become Steve’s carer, making sure he eats and takes his numerous medications besides a ton of other seemingly insignificant things that add up to constitute a full-time job.
To do this, I have cut back on my client work and am now only doing a couple of hours a week towards being self-employed. I do this gladly because I love Steve and I don’t resent a moment of it. I’ve had to get better at recognising when I’m becoming burnt out and finding a way around it.
But back to the government help thing. Last week Steve had a tribunal in which he appealed a DLA decision that said he didn’t need care. We went together and explained in person to a room of six people his needs.
And they upheld the decision. They consider him not in need of care or the financial help to provide it.
It took a year for us to reach that point and to say we’re devastated is an understatement.
Three days before our wedding, we heard that Steve was losing his ESA (a different kind of benefit that we use for all kinds of crazy things like food and electricity). So we then began a second round of the appeals process.
It took them over a month to decide to pay us while that process is ongoing, meaning we had to use money we received as wedding gifts to allow us to live.
The stress has been unbelievable, and it’s not over as we wait for the ESA tribunal date to be decided. Part of me doesn’t want it to come, because we have no backup plan for if it fails. There is no possible way we could have a backup plan, as the (reduced!) amount they are currently giving us doesn’t allow any spare money that could go into savings.
Meanwhile, my awesome, lovely husband is forced by stress into ever increasingly bad health and I miss him. I love him to bits, and we spend a great deal of the day side by side, with me awake and him out of it.
As things are, he isn’t able to focus on getting better.
Not wanting to end on quite such a bleak note, I want to instil within you the importance of voting out the cruel, uncaring government who has put Steve and so many other thousands of people in this position.
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I wish you both well.
I’m involved in the Label Lit event for #PoetryDayIRL and I will be labelling at Stormont.
One of my labels reads
“So should we pay more attention to welfare reform?
In case that Benefit Cap becomes our uniform”
We rarely pay attention to these changes unless it impacts on us directly at the time, only to find out later that the necessities we thought we ould be entitled to are beyond our reach.
I hope you get this all resolved; soon.
Thanks, Karen. You’re so right.
This is a dreadful situation, Ellie. What you say about the cruel, uncaring government is so right.
God Bless you both I know how horrendous this situation is as I live with PTSD and MS and how no one in government cares less about the daily suffering and struggle the sick or their careers go through. I pray for you both that God intervenes and his will be done. You both deserve to enjoy this special time of your lives without all this worry. Love and hugs Bev xx
Genuine solidarity. My ESA was sanctioned last August because I couldn’t go to a medical assessment. I appealed. The appeal process takes a ridiculously long time and you don’t get any payments during that time. The tribunal – one lawyer – upheld the sanction on a legal technicality. He found me “not unfit” for work despite being able to see that I can barely walk and am paralysed down one side. I have reapplied for ESA from scratch and been awarded it, thus they recognise that I am not in fact fit for work. It was a punishment. I told them that I am a single parent and that it’s cruel for my son to be punished by poverty for my illness. They saw my illness and my son as irrelevant. This was about me not attending a medical assessment. The distress and trauma of being mauled and degraded by the system which is supposed to look after you, makes you even more ill. It’s despicable. I commiserate with you, and wish you the very best with your ESA tribunal. Be sure to get someone to represent you. I hope that help comes to you from many other places and people.
It’s despicable, isn’t it?
Scary how many people have been through the same situation.