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General health and well-being Informative posts Studying at University with Disabilities Uncategorized

Acceptance: Learning to Thrive

Hello there. I hope you’re having a wonderful day. It’s been fairly productive today which is really good for me; I’ve managed to get some work done, gone food shopping and done general errands, but as a result I’m now slumped on the sofa desperate for bed. It sounds like I’m being a little dramatic, but doing the ‘everyday-stuff’ – you know, the boring Adult stuff – can often be the hardest for me.

I can cope with my university work; I do a research degree at my own pace. I can cope with my occasional volunteering and of course I love writing this. But it’s the everyday things, the essential things that are becoming more and more difficult to keep on top of. Washing clothes, hoovering up, cleaning the bathroom, cleaning the kitchen, preparing and eating meals…these just take me ages and completely wear me out.

By the time I do all these things, my university work  and social activities, I’m pretty much exhausted.

When I was younger I suppose I didn’t realise just how much I relied on my mum and family to do things. Loading the washing machine for example leaves me in agony. I struggle to use both hands, so even just washing pots and pans and hand drying them is a gargantuan effort. Hanging up clothes to dry and then folding them away when you have half a body that doesn’t cooperate as you wish is physically draining.

And don’t even get me started on how I feel emotionally about all this. I can guarantee it wouldn’t make for cheery reading.

When I started university I realised that living independently is difficult. There’s lots of little things that need to be done during the day and when you don’t feel up to it – because of pain, or tiredness, or low mood – it’s all too easy to leave. And thus you enter a vicious cycle of accumulating mess/paperwork/laundry and no one wants that.

I started seeing an occupational therapist for the first time ever this year. I don’t know why, but despite my cerebral palsy diagnosis I’ve never seen one (and the repercussions of that belong in a different post entirely!). Seeing occupational therapists has genuinely changed my life. I never realised I was entitled to living aids. I never understood why I found everything so hard, but it was all explained to me. Seeing occupational therapists has been genuinely fantastic. Initially it was extremely daunting having someone come round to tell me that I needed extra help and things to help me around the house, and I found this hard to admit.

Someone once told me that getting help was giving in, and that’s always stuck with me.

Only recently have I come to realise that getting help is far from giving in; they enable me to live more independently. Using aids – a seat in the shower, a rail on my bed, a perch stool for cooking – lets me do the everyday things when I’m too exhausted to stand up or when I’m in severe pain. I can cook knowing I can sit down. I can grab a rail and get out of bed even when my body is resisting. It’s amazing.

The occupational therapist who visited my flat gave me a catalogue full of helpful living aids and I’ve been flicking through it circling the amazing things available. There’s chopping boards with spikes on so you don’t have to hold food whilst chopping it, and ‘easy reachers’ that mean I can pick stuff up without bending over and being in unnecessary pain. I’m realising I’m finally ready to accept this; I’m finally ready to accept that by getting these things to make life easier I’ll be living my life to the full.

It is not weak to accept help.

I don’t want to limit myself and my choices in life. I want what everybody wants; I want to happy.  I am taking the steps towards acceptance.

I am learning to thrive, and I will get there.

I hope you’re having a fantastic evening,

Heather x

 

 

Categories
Mental Illness Things Cerebral Palsy and Scheuermann's Related Uncategorized

Meds, Appointments and Pain…

…are just a few words to sum up the last few months. It’s really strange. I worked out the other day that I haven’t had a single week free of hospital appointments since I moved back to uni. That’s three months with at least one hospital appointment every week (but sometimes up to four a week).

I am exhausted.

Being perpetually tired is something i’ve had to get used to as of late, and the worst thing is I don’t know what it is that is leaving me so run down. The other day I had my occupational therapy appointment. For anyone who doesn’t know, they basically help you to ‘do’ things better. So in my case – cerebral palsy (right hemi) – they  help me to make sure my hand has ‘reached its full potential’ in terms of coordination and control. As it turns out, I have a pretty powerful grip in my palms, but I find controlling my fingers and other fine motor movements completely frustrating. I can’t pick things up with my fingers  very easily at all, or do up buttons, or cut up my food at dinner, or use my right hand when my left hand is full (getting on the bus with the change in one hand/ticket in the other/personal belongings balanced somewhere on my person is incredibly challenging).

As is the case for many with a disability you learn to adapt to difficulties, and you manage to find a way around the more challenging daily activities. This isn’t always a conscious effort, and as my occupational therapist pointed out I won’t realise I’m making these changes. The adaptations one makes with CP aren’t ‘natural’; they’re not energy-efficient or ‘easy’ movements because they’re not the movements the body is designed to do. I had always read that people with CP expend between 3-5 times more energy than those without but I didn’t quite realise this until the other day, particularly with regards to my own CP.

My therapist gave me a simple task to complete with my right hand; I had to place plastic pegs into holes on a board. This wasn’t a trick and there was nothing sneaky going on: it was just a simple, easy activity.

But not for me.

As I tried to gain control of my fingers to pick up the pegs I dropped them. I then struggled to get the pegs at the right angle if I managed to pick them up (very awkwardly). My elbow was pointing outward, my wrist was curled under, and my whole posture changed; I was so, so intent on completing this activity my head felt like it would explode. Everything about my body was fixated on trying to complete this one little meaningless task, and it completely exhausted me.

and, most of all, I felt like a failure because I couldn’t.

I’ve never done these tasks before, and I’ve never seen an occupational therapist until this year. Treatment was mostly focused on my leg (physio, the occasional neuro and consultant) and my walking, as I had an operation to enable me to do so when I was very small. I think my hand just got a little bit left out on the way, and as a result I’m finding all these tasks impossible and ridiculous and a little bit of a shock to be honest.

Of course I’ve always known I haven’t had good control over my hand, and I often deliberately avoid using it because I drop things and have in the past been made fun of for it (kids, eh). But this exercise drove it all home to me.

It’s hard to live with a brain injury. It’s frustrating when your body doesn’t behave in the way you want it to. And it’s tiring, because not only is it physically taxing but mentally frustrating.

We had a long discussion about Everything, and it was so refreshing because I felt like she really understood me. We discussed the fatigue, and really it’s probably a variety of things combined into one; med side effects, pain-related tiredness, depression, anxiety, CP…and for now that’s something I have to work through. I need my medication. I can’t just stop doing things. And unfortunately neither my pain nor brain (ha!) can switch off for very long.

But most importantly what my therapist made sure I knew was that it is okay. It is okay to feel this way. It’s okay to take rest days, and it’s okay to have a break.

Living with a disability isn’t easy.

It is not okay however to make myself feel bad about all this, and feel bad about the fact I’m tired, or think of myself as a failure, or less than worthy. Because those thoughts just add fuel to the fire.

Having the depression and anxiety on top of the CP/spinal problem really doesn’t help (and I spend a lot of my day feeling sad/empty/guilty/horribly anxious as it is) but I do not need to add to these feelings.

I am not a failure, because I will learn how to do things differently. I will thrive, because I’ve already come this far without the help.

Getting used to everything is taking time, but I think I am getting there. It’s just going to take time.

I am sorry because this is a really rambling, ridiculous post, but (as always) many thanks for reading if you got this far. It means a lot.

Take care of yourself whatever you’re doing; we could all do with a break every now and then.

Heather x