As the saying goes, you only have so many hours in the day; and for each of those hours, each of us only has so much energy. There’s a wonderful metaphor used by people with chronic illnesses that equates the limited energy they have in the day to a lack of spoons. It sounds a bit wacky at first, but it makes a lot of sense when you get into it and really resonates with people for a reason. (Read the full explanation here.)

It’s easier to think of things like energy in terms of something physical you can see and count and comprehend. The article linked above theorizes that healthy people don’t have to think about their spoons or try and conserve them because they have an infinite amount. I’m not so sure on that count, but the rest certainly stands true in my experience.

I imagine a regular person (that is, someone without a chronic condition) to have one-hundred spoons per day – one-hundred being a round number for simplicity. It’s more spoons than most days require, with some left over at the end to waste on frivolity or throw away without needing to worry about them.

Relating this to my personal life: my husband – who I care for and who has a few chronic conditions that prevent him from working – has fifteen spoons on an average day; twenty on rare, extremely good day; ten on a bad day, and five on his very worst days. On the five-spoon days, all he can do is sleep, just about managing to eat the food I put in front of him at periodic intervals.

My own chronic condition is less severe and I usually end up with about forty to fifty spoons – much less than your average guy on the street but considerably more than my husband.

Bearing all that in mind, sometimes I wonder if I’m crazy for wanting a child. I’ve sat worrying, some nights, that people who know of our situation will judge us as being reckless or whatever to try for a family when we both have poor health. Sometimes I feel the need to justify our decision, but I won’t.

I am considering my spoons as I plan for the future, though.  Continue reading →

At the end of April, I published a blog post here about the nightmare my husband (and, by extension, myself) was facing. At the start of May, I wrote an update. Well, it’s August now, and we’re still facing the Same. Damn. Thing. It’s exhausting just thinking about it, but let me give you a recap:

When I met Steve, two and half years ago, he was already ill. He was diagnosed with diabetes maybe four years ago. Six months after that, he collapsed, was in a coma for a bit, and woke up to find he had the bonus condition of seizures. Fatigue came along for the ride, happy in its task of exacerbating his existing mental health issues (anxiety and depression) – I speak of all this with levity, holding fast to the old adage, “If you didn’t laugh, you’d cry.”

About three years ago, Steve moved back home with his parents and got a new job. He collapsed again, while at work, and had to be removed in an ambulance. There was just no way he could go back, so he did the obvious thing of applying for welfare. (I hate the word ‘benefits’ and the connotations it conjures up, but that’s a different rant for a different day.)

Continue reading →

To everyone who has shared and commented on my previous blog post, I want to give you many, many thanks. Steve and I really appreciate the love and support we’ve had from everyone.

I thought I should probably give a bit of an update on how things are now. I know not that much time has passed, but there have been a few developments.

Some of you asked if we have a representative to help us through everything and yes, we do. Although our appeal against Steve’s DLA decision was unsuccessful, our representative has told us that we still can challenge the decision at a higher level, so we have formally requested more details on that.

Regarding our claim for ESA, we now have a tribunal date and are in the process of preparing for that, having met with Steve’s GP today.

The past week has maybe been one of the hardest yet, as Steve’s health has suffered more due to stress and I’ve also started feeling burnt out again. We’re just trying to get through one day at a time and all of the kind messages we’ve had has really helped. I cannot emphasise that enough.

To answer another question we’ve received a lot, I don’t think there is anything else anyone can do to help us at this stage (other than the aforementioned well wishes). I have been toying with the idea of starting a petition to submit to the ombudsman, urging him to reconsider the DLA decision, but have been advised to hold off on that just yet. If it becomes necessary, I will share the link around and would appreciate it if people would pass it on.

A couple of local politicians have shared our plight and someone has been in contact to ask if the media can run a story. Time will tell what, if anything, will come of that. Steve is reluctant to draw attention to all this, almost, but it is important. We just hope it won’t be held against us somehow.

On a different note, I feel the need almost to proactively defend myself. I know welfare is such a contested issue and it engenders a lot of strong opinions. I would like to urge people to question things before they judge.

Maybe you’ve seen me post a status about attending the theatre in the past week, and maybe you think to yourself that it’s terrible we are pleading poverty while spending money on seemingly frivolous things. If that is what you think then to you I say that things are not as simple as all that.

As hard as things have been, it’s a fight to find positive things in our lives to focus on and keep us going. It’s vitally important now more than ever to make the most out of the good days.

We may have little money and an uncertain future but, to paraphrase something Churchill once said, if we stop investing in the good things in life, then what are we even fighting for?