Living with a Chronic illness long term

I can’t believe I’m writing this but it’s been almost a year since I first became ill. My symptoms started in November 2017. Everything was brilliant before that. We had just had our first family holiday, we’d moved into a new house and been busy decorating and getting it ready for habitation. My weight was under control, I was working two jobs I loved in equal measure. We were happy, content and just getting on with it. How quickly things change. And it puts it in perspective how brittle our health and our lifestyle is. Things can actually change overnight. I never imagined for a second that a chronic illness would tap me on the shoulder and become a life long companion.

It took a while to settle in. The annoying thing is almost 12 months down the line, there is still no treatment or explanation as to why I’m in daily pain. Some days, I wake up and I feel brilliant. This morning is a prime example, I’m buzzing. Got a early wake u call from mini tornado at 5:20 but I got up made him breakfast at 6:20, hardly any pain apart from slight stiffness, had cuddles, took the elder kids to school. Even did some posting and now I’m writing this. I’ve even cleaned! But I’m angry. Angry that this THING affects me so much some days. That it takes my happiness away from my kids. Really, I don’t want to be remembered as this touchy, snarky arsehole who shouted at her kids and couldn’t get off her sofa.

Changing seasons

I love autumn. But the recent cold snap has had me struggling with pain. It’s strange Rheumatoid arthritis shouldn’t be weather reliant. This time last year I was in Spain and walking miles, and miles every day. I’ve always been quite physically active, and yes when you’re bigger you get the achy legs but it’s a lovely ache of knowing your legs took you to see things a car could never.

I was stuck in the house A LOT over the winter. Not because of the weather but because I just couldn’t get up. Physically (and this was a month and a half after being able to walk 5 miles plus a day) I had to bum shuffle over to my bathroom from my bedroom. A whole 20 meters. And the journey felt like climbing Snowdon.

This Summer, I’ve tried so hard to keep going, but have only managed two maybe three longish walks. When I work a long shift at work my feet feel like I’m walking on broken shards of glass. My toes get numb. My arms are full of pins and needles. This is pain I live with most days. It’s changing me, and I don’t like it.

Sudden onset

It’s been A LOT to get used to. Definitely accepted it now, but I will not accept these limitations it’s putting on my life. It will not make me unhappy. If I feel like crying I’ll go do it somewhere the kids can’t see me. But, the sudden onset has had a huge effect on mental health. Never have I been the girl to say I can’t. Now I am the girl who says, I can – BUT it might take me some time. This cam on over night.

Medically I’m still no better off. Even though I’ve seen a Rheumatologist, who confirms I have RA but the levels are too low to cause the amounts of pain I’m in. I pushed back saying, OK then, what’s causing my pain. Because this isn’t my normal. Everyone has a different normal. Some people get used to ailments, and this is theirs. I suppose that this is now mine.

I’ve also pushed back on the doctor. I’ve had to book another appointment next week because what he prescribed last time didn’t even take the edge off pain levels.

Been thinking so much, is this just in my head? If the doctors can’t get to the root pain of why I have to drag myself along my hallway to pee some mornings, then is it my brain playing tricks? NO – because I was absolutely fine until November 2017. Should I have seen it coming?

Applying for PIP

This wasn’t done lightly. Believe me I hummed and hah’d for months. Applying for anything from the government feels against my nature. It also means in my head that I’m actually admitting I have a disability. It’s not a disability payment. It’s a personal independence allowance. The forms went in in July, and I still waiting to be interviewed. A word of warning, if you are thinking of applying, it doesn’t happen overnight. The form requires a masters degree to complete, and I am not looking forward to meeting the adjudicating officer.

They will drag through your medical records. What do mine show? That I have low levels of Rheumatoid Factor, that I’ve moaned to my doctor, who gave me CO-Dydamol which didn’t do anything? That I’ve been a constant bee buzzing in the system for the last year? Meh. They’re going to ask me about my worst days. The days where the toilet feels miles away. Where I can’t get dressed or undressed without help. Where I’m ashamed to say I’ve hidden under my duvet to just sleep it off, only to be woken up by pins and needles and cramp.

I don’t think I’ll receive entitlement. But you know what? Days like this make it worth it. I’m ok. I’m happy. But I wish they were more often and that I didn’t just feel like a survivor without a cause. I want answers. Just feels like I’m getting fobbed off.