On people with chronic illness who are well enough to work full time…

This might be a bit of a controversial post, but certain people on social media are stating the fact that they can work full time isn’t because they are less ill. Which makes those of us who are unable to work at all or full-time feel shit about ourselves. What magical just push-through skill do we not have? I was the queen of just pushing through. Being reliant on the benefits system is my biggest fear, and I think it ultimately put me where I am now.

Relient on benefits.

I get the “Oh I have to work out of necessity I can’t afford a life on benefits.” But can anyone? The basic UC payment for an under 25 is £263 or something like that. It’s a bit more if you are over 25. I’ve just turned 25 so I am hoping I’ll benefit from the extra. You then get housing benefit based on the LHA rate. If you are under 35 and not on PIP this is a shared room rate. Where I live the rate is around £304. You cannot find somewhere to rent for £304 here. It’s a cheap area of the country but not THAT cheap.

So I ask again. Can anyone afford life on benefits? With a backlog of up to 18 months for work capability assessments, many people have to appeal PIP.

I get that the “We’re just stronger” “We’re not less ill” thing was based on comments made by other people on social media.

But consider this. Maybe you aren’t less ill, but you have better management and support in place. A lot of people I see able to work full time are on strong pain medication. The pain medication I can’t take the every day because I have chronic migraine and medication overuse headache is a thing and yes potentially having medication overuse threatens your access to appropriate treatment on the NHS. Even for people without conflicting medical condition dilemmas, tramadol in quantities to take daily is hard to access from a GP. Especially if you are young. A lot of us don’t have the relief that may allow us to work full time, or at least work more hours. Access to better management and treatment is a real thing, especially with the NHS being such a postcode lottery. I think instead of trying to make those of us who can’t work feel bad, people who can need to admit that maybe they do have better access to treatment than some of us can obtain.

That doesn’t mean that they are less sick. It just means that symptoms are better controlled.

We also need to realise that maybe you are less ill if you can work full time, or have a job with all the accommodations in the world. That doesn’t mean your illness isn’t valid, it just means a lot of chronic conditions are spectrum disorders. Some of us experience it worse than others.

We do just generally need to stop the nastiness on both sides. Those of us who can’t work aren’t all privileged enough to be able to actually afford it. I know I’m not. And those of us who can are still valid in having chronic illness.

Grief

I feel like I am feeling grief over many things lately,

The very real and obvious grief of losing my childhood dog just over a month ago.

The grief of friendships that you feel are no longer. The kind of friendships where people expect everything from you but give you very little back. The realisation that I need to, at least for the most part cut these people out of my life combined with the all consuming loneliness that comes with that.

And then there’s the grief of having severe daily chronic migraine and not knowing whether you’ll ever be able to go back to becoming a solicitor. Or scratch that, to just living a normal life again. Especially with the EDS worsening as a result of spending the year largely bedbound.

It’s a very real feeling of loss. Loss of what your body could do. And wondering, if maybe you hadn’t pushed so hard to be at work at the start, maybe it wouldn’t be this way now. Maybe if you hadn’t pushed so hard you would be better. You’d still have your job. Your joints wouldn’t have got worse. You’d be able to figure skate again.

It’s a hobby that is expensive so even without the practical limitations of getting to the rink, managing pain and dizziness and the PEM that would undoubtedly come after 2 hours on the rink and a journey of just under an hour each way the money I get on benefits wouldn’t cover. It doesn’t cover climbing, which is by far cheaper as the wall offers monthly and yearly memberships. Although the state of one pair of climbing shoes may disagree. Luckily I used my final pay check to get my other pair resoled though so I’m good for a while with shoes.

It’s the grief of the fact that you need to nap after leaving the house for a couple of hours. The loss of the rest of the day. Even low energy activities being too much. I love to write, read, watch TV shows that are my special interests. But a lot of the time, music and podcasts are all I have.

The loss of cognitive function also carries a lot of grief. I used to be creative, intelligent and now a lot of the time I am neither of those things. Wading through a thick fog in my brain.

Then there’s the loneliness. The loss of your soul mate in dog form. Coming home for Christmas to a house without her there. The loss of friendships, realising that actually people don’t really care. Feeling insecure. Having so many thoughts constantly running around your head but no one to share them with without being annoying.

Grief is hard. Especially when it is grieving the life you once had.

Thoughts on 25

Well, it hurts when your two closest friends don’t even acknowledge your birthday with a DM, text, instant message, Anything.

In reality I’ve felt like I’ve been drifting away from these friends for a while. Like they’ve cared more about me helping them with their problems than me. Friendships are give and take and I’ve felt like I’ve been giving for nothing. So I don’t know what I expected really.

I didn’t really want to celebrate this birthday, make a fuss of it around people because quite frankly this last year has been my own personal definition of hell.

To get your dream job and then have chronic migraine and EDS ruin it. To be largely stuck horizontal, fighting with the benefits system, feeling like no one believes you. Being desperate to work but not being able to find something that suits how dynamic and complex your chronic illnesses are. Knowing it’s only a matter of time until you are in poverty.

So to say the least it has been a rough year,

25 is a weird age. Some people have their lives together, have families, pets, jobs they love. Other people don’t.

And right now my life is very much not together.

It hurts to feel like you have wasted potential.

Potential that is wasted because of the volatility of your health.

Whilst I have done things this year that I never thought I’d do and do have some brilliant memories, for the most part I’ve felt stagent.

It has been a bit of a lonely birthday because postal strikes mean birthday cards sent by some family members haven’t arrived yet. I am literally still waiting for a jumper that was dispatched over a week ago though so not a surprise. I do support the strikes but it does have an impact.

I did however get to borrow a gorgeous dog on my birthday which was great fun. Doggo cuddles and play time solves all of life’s problems.

I have no idea what this next year of life will bring. Hopefully, me sorting my life out or at least accepting that until I get my migrsaine injections and they work it will be hard for me to find the right job.