How my PIP assessment went

N.B. Personal Independence Payment (PIP) is a benefit in the UK that helps disabled people cover the extra living costs they incur as a result of their impairments, such as needing to pay for a care team or buy pre-cooked food.


My PIP assessment was actually a positive experience. Yes, you read that right. It was a positive experience for me, and I am stunned.

While I wasn’t anxious or stressed in the days leading up to the appointment, I didn’t have an ‘everything will be fine’ attitude about it either. I was definitely not expecting to feel relaxed, or like the assessor had an understanding of my cerebral palsy, and yet, that is exactly how I felt throughout.

My assessor was lovely, apologised that some of the questions were a bit personal and kept telling me that my answers were good or understandable; like when I told him that although my impairment mainly impacts on my lower body, I still get pain in my neck and shoulders because of poor posture. I felt like he understood the nature of my pain and that made me feel more relieved that I thought it would. Looking back now I was definitely worried that my pain levels might be brought into question, and they weren’t.

He referred to things written on my form and medical evidence a lot, which made me feel like he’d read my case carefully. I mentioned depression and anxiety in passing on my form, because the medication I take for that means that I can’t take ibuprofen as pain relief any more, and he told me that he wanted to explore that a little more so he didn’t miss anything.

I felt listened to and believed. I thanked the man at the end for making me feel comfortable. I have friends who have found their own assessments very distressing, and I’ve heard many similar stories on social media too. I am aware that this makes me lucky in a way that it shouldn’t have to because everyone’s experience should be like this.

As daft as I know this sounds, I’ve spent today in a bit of a daze. I can’t quite believe that it’s all over, and how much better I feel for it. I feel so grateful to have had such a positive assessment. I feel sad and guilty that so many don’t feel the same way about their own.

Of course, the PIP application process isn’t over for me just yet. The assessor now has to write a report that will be sent to a case manager who will decide the outcome of my claim.

The important thing for now is that I feel like the assessment went as well as it could’ve done.

I just have to hope the outcome is in my favour.

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Do I seem anxious to you?

“You’re not anxious, are you? You always seem quite confident.”

My jaw must’ve hit the floor, “Oh, yeah,” I replied, trying not to laugh, as I often do when I’m shocked. “I’ve had anxiety for years, I just manage it with drugs and therapy.”

This is a genuine conversation I had with someone this week after I mentioned something triggering my anxiety. I wish I could remember what I’d actually said. I’m pretty sure I only meant for it to be a passing comment, but the person I was talking to seemed genuinely surprised by it.  In the end, I’m not sure which one of us was the most shocked; them in learning that I have anxiety, or me in learning that I’m managing to control my current ‘wobble’ well enough for it to not obvious.

Admittedly, this person has only known me for a couple of months, and hasn’t yet seen me when I turn into a fidgety, muttering mess who can’t stop washing her hands and has to ask someone ‘will [insert current worry] be all right?’ more often than a two year-old asks ‘why?’.

There’s no shame in being so anxious that it stands out more than my electric blue walking frame, but it was reassuring to know that, even though I feel like I’m slipping downhill a little bit at the moment, it clearly can’t be as bad I was starting to think it might be. It would have been impossible for me to relax at all a years ago, and I couldn’t help but outwardly show how I was feeling. This, of course, made everything worse. It led my family shouting at me in public out of frustration, and me not being able to see my friends without texting them afterwards to apologise, even none of us were sure what I was apologising for.

I’d spent most of the weekend prior to this conversation either in bed with the duvet over my head hoping the world would go away, or reading aloud to myself in an effort to stop myself falling into worry-cycle. It must have done me some good, I guess.

Even though it wasn’t meant as one, I can’t help but take this person’s surprise as a huge compliment. I take this to mean that, even on days when I’m feeling ‘worse’ than normal, my self-care routine and day-to-day coping strategies are helping.

There was a time when I was genuinely concerned I’d never manage to control my worrying and hand-washing ever again, but clearly I can.

I came back from my lowest place, and knowing that is the biggest confidence-booster of all.

Mental health update for #MentalHealthAwarnessWeek2019

It’s been a while since I’ve given you an update on how my mental health is, and this week is Mental Health Awareness Week 2019, so now seems like a fitting time to bring you all up to speed.

A bit of background about my mental health

Long time readers of this blog might remember that I’ve struggled with anxiety which manifests itself as what I call ‘OCD-type tendencies’ since I was about eight or nine years old. It started out as me constantly worrying about germs and constantly washing my hands. Over the years it’s taken a few different forms, like uncontrollable worrying, worrying I would eat too much and be sick, an even more intense fear of germs that had me washing my hands before, during and after a trip to the loo and changing my clothes after every visit to the bathroom.

When I was at my worst around five years ago, I was unable to sit still and would often pace my house crying and mumbling to myself to try and quiet the din in my brain. I struggled to get a job after graduating university, which made me depressed at the same time. Some days I struggled to get out of bed. I felt worthless and everything felt pointless. The world seemed grey for a long time. I went to the doctor, started antidepressants and started therapy again.

How my mental health is as of May 2019

As of May 2019 I’ve been on antidepressants for roughly five years, during which time I’ve altered dosages and changed tablets until I found what seems to be the right fit for me. Medication was not a magical cure for me, and it certainly hasn’t taken away my anxiety completely, but it definitely has made a difference in my case. In truth, I can’t really remember a time when I haven’t had anxiety, and I’ve accepted that it is something I’ll have to manage throughout my life. I’m sure there’ll be bumps along the way, but I feel like a have a deep enough understanding of my triggers and the things that help me manage the blips, to nip things in the bud before they reach the levels I’ve been at in the past.

Up until a couple of months ago my anxiety levels were feeling pretty, well, level. I’ve not felt quite so ‘comfortable’ of late, but that’s something (in my case) to be expected, given that I’ve recently started another new job and am in the process of applying for PIP. I’m aware of how I’m feeling and I’m monitoring it. The people close to me know I’m feeling ‘unsettled’, and I’m using some of the coping strategies I’ve learned through various stints of CBT.

I’ve been in full-time employment since January 2018, and I don’t think I’ve seen a therapist since the September before that. I always used to say as soon as I got a job I’d pay to see a therapist privately on a constant basis. Of course, the support I’ve had on the NHS has been amazing, but as anxiety especially is something I’ve struggled with since childhood, I feel like being able to have support from the same person as and when I need it for as long as I need it, would be massively helpful to me.

And yet, since I’ve started work I don’t actually feel like this is something I need to do. Not yet anyway.

It’s taken a long time, and a lot of hard work, but I think I’m mentally in a good place, and have been for a while.

 

#ThingsILearnedtoAccept

The above hashtag has been trending on Twitter today. I soon as I saw it I knew that I just had to contribute. The differences between how I think and feel about my disability, and perhaps more importantly, how I thought others think and felt abut my cerebral palsy, have changed drastically over the past two years since I started filming Employable Me.

It’s been a year since the series aired now (yes, really) and people still stop me in the street to tell me how watching my journey impacted them. Yes, the series ultimately led to me getting a job, but it changed my life in so many other vital ways that there is no way I could do them justice in a single tweet, so I thought I’d blog about them instead.

The only person who expected me to be at my physical best all the time was myself

Perhaps the most important thing I learned was that no one expected me to have my ‘best days’ every day. People know that there are some days that I might need to move around less than others, or stretch more. They are okay with that. I was the person who wasn’t. And by trying to keep my pain to myself; to struggle doing things on my own just because I can usually, was just making my life more difficult unnecessarily.

No one actually minds if I take stretch breaks in the office

I used to worry that people would think I was being lazy or weak if I took a stretch break in the office. No one does. They prefer it because then I can concentrate better and actually perform better because of it.

Asking for help with the little things whenever I can actually makes life easier

Guess who actually asks bus drivers to get the ramps down on the bus if they don’t offer themselves? This girl! Guess who doesn’t feel guilty about it? Me again! And, best of all, guess who can actually admit that it annoys her if they don’t automatically ask me?

I know this sounds utterly bonkers now, but I never used to feel like it was acceptable to feel annoyed when things like this happen, or when a building doesn’t have and lift or ramp, or when there isn’t a dropped-kerb on the road so I can cross without having to lift my walking frame.

I used to feel like there was pressure to just accept these things without complaint. It turns out that vocalising these feelings in a polite way actually helps people understand the challenges I face in day-to-day life and the help I, and a lot of other people in similar situations, need.

My anxiety is something I’ll have to manage for the rest of my life, and that’s okay

I’ve struggled with anxiety, that often manifests itself as being afraid of germs, since I was about eight years-old. I’ve been in and out of therapy for it since I was about 10. I used to get incredibly frustrated that it was something that I couldn’t get away from, or ‘cure’ myself of completely.

Just when I thought things were simmering down, something would happen to trigger it again, which in turn would make me even more anxious to the point where even sitting still became impossible and I’d just pace the house muttering to myself and crying because I was worrying about so many things it was the only way I could focus on one thought at a time.

Accepting that flare ups are just going to be something that happens to me every now and then takes away that extra layer of anxiety, and ultimately, makes me it easier for me to manage my mental health the rest of the time.

There are so many more that I could mention, but I think this post is long enough for now, don’t you?

2019: A new year, a new job and a new wheelchair on the way

Hello everyone, and Happy New Year. I actually meant to write this post way before now, but those of you who’ve been reading this blog for a few years will know that New Year is a massive anxiety trigger for me, what the all the pressure to become a better person, achieve more, eat less chocolate, blah, blah, blah; so I decided to lie low on social media until all the fuss had died down.

Anyway!

Things have been pretty busy in Nicland over the last couple of weeks. My family and I made it through the festive season without any arguments, I finished in one role at work and started another, I officially got another year older (happy birthday to me) and I have a new wheelchair on order.

I’m not sure how long it will take for my new chair to actually arrive, but I’m already thinking of new names, and wheelchair services has give me new wheels and brakes on my current one to tide me over.

2018 was a busy one too, and in amongst it all I said goodbye to my walking frame Ivy and am now the proud owner of an identical one called Netta. It took me a long time to settle on a name for this one, but people at work helped me choose and now I’m pretty pleased with it. She moves so smoothly compared to Ivy, whose wheels were starting to hang by a thread, that I feel as though I have to practically jog to keep up with her.

In other news, I’ve also renewed the domain name and re-mapping on this blog too, so it looks as though I’m sticking around for a while longer yet!

1am

It’s 1am and here I am, unable to sleep for what must be the third time this week.

I have no idea what’s keeping me awake tonight. One night, it was feelings of ‘What am I doing with my life?’ another time it was because I wanted to write. Last night pain decided to climb into bed with me and make getting comfortable impossible, but today…
It’s been one of those weird days today, where I haven’t felt unwell exactly, but I’ve not been myself either. I could tell things would be like that as soon as I woke up because I felt anxious to my tummy. All churn-y and whatnot.
I’d already planned to work from home, which was probably a blessing. I sort of feel like I’ve been in a daze all day; not down the grey pit of depression, but not fully engaged with life either.
I suppose I’m probably just over tired. I think I should try sleep now. I hope i can. I’m sure things will feel better in the morning…

4 years on antidepressants

The other day while I was in the shower it hit me: February marked four years since I started taking antidepressants, and as well as wondering where the time had gone, I realised I wasn’t sure how I feel about this. I’m still not.

Before I go any further with this post, I want to make it clear that right from the first couple of weeks of taking my meds I knew I’d done the right thing. It’s actually the best thing I’ve ever done. I have no regrets.

But I still remember how I felt in my doctors appointment that day. I’d been offered meds before in the past and refused them, but this time I knew I’d do anything they suggested. At the time, my anxiety was more of an issue than depression, and, as dramatic as I know this sounds, I was genuinely scared by how bad things had become.

I couldn’t relax, couldn’t sit still, and my germ anxiety was so bad I changed my clothes every time went into the bathroom, even it is was just to scrub my face. I washed my hands before, during and after using the toilet.   I laugh about this last part now when I bring it up to show people how far I’ve come, but honestly, I don’t find it funny in the slightest. I find it terrifying.

Then the doctor told me that he’d like me to be on them ‘until I’m feeling a bit brighter, plus another six months’.

I felt like the bottom had just fallen out of my world. I wanted to take it back. I wanted to take it all back, even the CBT I’d agreed to try instead of counselling like I’d had several times before (I’ve actually had CBT since then too). I’d agreed to give over at least half a year of my life to taking these meds. That was way too long! I’d made a huge mistake! I couldn’t take it back because the prescription was already in my hand.

I got home and paced my room as I listened to Twenty One Pilots in my earphones as loudly as the volume would let. This, as trivial as it sounds,  is actually quite significant and proves how angry I was with myself. When someone bought me my very first tape walkman as a kid, I hardly used it because I was so afraid it would make me go deaf, and on the rare occasions I did use it, I would spend at least 10 minutes after I’d taken the headphones off repeating everything my parents said back to them so they (and I )  could check I hadn’t gone deaf. I had to do this for quite a while to prove that my ears were’t playing tricks on me for the first few sentences…

I’m over this particular worry now, but it’s always in the back of my mind whenever I use my earphones.

Anyway…

Fast-forward to 2018 and I’m taking antidepressants way, way, way more for depression than anxiety and I feel strangely okay about it. I’ve had so many ‘dips’ in this time that I know I’m not ready come off them yet. They’ve not been a magical cure, I’ve had to switch tablets once and raise my doseage more than once, but most of the time they keep me level enough that I can drag myself out of bed, even on my ‘bad’ days, and can actually distinguish one thought from another rather than being sucked into a rabbit hole of thoughts and worries.

I feel like I’ve hit rock bottom at least three times in the last four years, but I’ve found my way back every time. When all is said and done, that’s what’s important.