Friday, 25 October 2013

I've been wanting to write about my experiences of having both mental illness and a physical disability for some time but I've found it quite difficult to articulate what I wanted to say. I have cerebral palsy, which is predominantly a physical disability, and I also have anxiety and depression. Over the past year or so I've gained valuable insight into how both my physical disability and mental illnesses overlap and interact. I confess that I used to think that they were totally separate from each other and were two distinct problems. I've really come to understand that they're interlinked and do share a relationship. I'd like to share with you what I've learned. 

 The biggest thing I've realised is how the pain and fatigue I experience because of my CP impacts on my depression. I suffer from chronic pain because of my disability and experience a lot of fatigue and this really feeds a low mood, and also anxiety. I've found that since my GP has given me adequate painkillers my pain is a little bit under control so it's not hammering my mood as much. I think pain triggered my anxiety because I felt like it was spiraling out of control and so I was catastrophising. Now it's a little bit more controlled it's lessened my anxiety considerably. The fatigue is harder to manage because you can't just pop a pill and feel better. Instead, I've had to make myself realise and accept that fatigue is part of CP and that I'll just have to adjust my life around it. Rest days are just another form of treatment, like wearing splints etc. 

I do think being ill with depression really affected my ability to cope and manage my disability. I've only realised this since I've started recovering from depression. When I was really ill with depression, I thought goals since learning to drive, getting a job would be unachievable because of my disability.  Depression really hammers your self esteem and often makes you believe you can't achieve things. This is the case of people with depression who aren't physically disabled too. I can't deny that my disability makes goals more difficult to achieve, I need a lot of support and often have to find alternate ways of achieving them. Depression honestly destroyed my self esteem so much that I didn't have the ability to figure out how I could achieve things and I thought I was totally incapable. Looking back, it was quite distressing, as I've always been a determined, ambitious person, and depression masked that. I just felt like my life was going to be a failure. Take learning to drive for example, I know it will be more difficult to do, I will need adaptions etc. When I was really ill with depression my way of thinking was 'CP will make learning to drive more difficult, you will probably fail, so to avoid feeling like a failure, it's best not to even attempt to learn to drive'. I had completely written it off before I'd attempted it because depression eats at your self esteem. Since my depression has improved so has my approach to my goals and my way of thinking. I guess what I'm trying to say is that I feel like depression really impacted on my mental ability to adapt to the challenges of my disability.

I've spoken a few times about how people with cerebral palsy are at an increased risk of mood disorders, although the reasoning behind this isn't clear. I have come to accept that my mental health problems are likely just another part of my CP, and so I've stopped thinking of my physical disability and mental illnesses as separate entities. It's really helped me to accept my MH problems by viewing them as just another facet of my disability. My anxiety can definitely be attributed to my hemiplegia because I had behavioural and emotional difficulties as a child, which is a known complication of hemiplegia. I think my anxiety is just an extension of the same problems I had in childhood. Accepting my MH problems are part of my CP has really helped me manage them better because I've stopped fighting them and trying to 'cure' myself. Instead, I've concentrated my efforts on strategies to manage them better. I also view my MH treatment no differently to the treatment I receive for my CP.

 I do think these realisations are important in the sphere of my recovery and acceptance of both my physical disability and MH problems, and being able to move forward with my life. I think it takes time to understand how physical disability and MH problems interact, and by understanding them both better it makes them easier to manage. 

Thank you for reading,

Amy X 

Sunday, 13 October 2013

What Hemiplegia Awareness Week means to me.

October 14th-18th is hemiplegia awareness week. Hemihelp, a charity which works tirelessly to support families, children and young adults with hemiplegia, have a great series of initiatives this week designed to raise awareness of hemiplegia. As a person with hemiplegia, I feel it's only right that I add my two pence worth. I wanted to discuss what hemiplegia awareness week means for me personally. 

In case you're new to this blog, I have left hemiplegia. It is a type of cerebral palsy, which I was born with. Physically, it means I have zero function of my left hand, it's paralysed. I also have partial paralysis of my left leg which means I walk with a limp and walking is slow and painful. I also have reduced sensation in my left side (I can't feel my left arm burning when sitting in front of the fire). I also have kyphoscoliosis - abnormal curves in my spine due to weak muscle in my torso. My hemiplegia also has cognitive and invisible symptoms, I have lifelong anxiety (more recently depression) and visual perception difficuties, fatigue and spatial awareness problems. My hemiplegia is caused by brain damage to the right side of my brain. 

Raising awareness for hemiplegia is incredibly important to me. Hemiplegia is not an uncommon disability, it affects 1 child in a 1000. Chances are that you will meet someone affected by hemiplegia in your life. I also believe that if we want society to be more inclusive of disabled people and for disabled people to be treated equally, then awareness is key to making this happen. I'm aware that cerebral palsy has a lot of common misconceptions, and this has had a negative impact on my experiences. I've had people assume I have a learning disability once they hear of my cerebral palsy diagnosis. I've had people assuming I must use a wheelchair. Breaking down these misconceptions is important, because misconceptions and ignorance often lead to discrimination, intentional or otherwise. 

Another reason why I support a hemiplegia awareness week is that hemiplegia is a more complex condition than people first realise. So many people assume that hemiplegia is just a physical condition affecting the arm and leg. I must confess, that until I started talking to others with hemiplegia I didn't realise how complex it was. i just assumed my unseen problems weren't part of my hemiplegia and were just me. I think by having an awareness week that talks about the invisible symptoms we may help others with hemiplegia understand their condition better (and parents too). 

I would also like to use hemiplegia awareness week to talk about the psychological impact of living with this condition. I feel like sometimes it's not okay to say 'living with hemiplegia is tough'. I feel like you have to put on a front and pretend that it's easy. I want to bring a healthy dose of realism to the proceedings and put it out there that having good and bad days with this condition is perfectly normal and it's okay to talk about it. I feel this is really important from a mental health standpoint. I know that my hemiplegia and mental illnesses are inextricably linked. I'd be keen to open up discussions about this link, I believe that it needs to be talked about more. 

I think it's particularly important that adults share their experiences of hemiplegia. Currently, it's very hard to access healthcare for the ongoing needs that hemiplegia presents to adults. It's viewed as a childhood condition, most people are discharged from their specialists once they have stopped growing. Healthcare professionals largely believe that the condition remains static. In my experience, I've needed more treatment as an adult than ever as a child. I know my experiences aren't unique. So I do think adults with hemiplegia should share their experiences to change the perception that hemiplegia is a childhood condition. 

Lastly, participating in hemiplegia awareness week is an amazing reminder of just how far I've come with my disability. A couple of years ago I didn't know anyone with my disability. I never talked about my experiences with this disability to anyone. Now I am a proud member of Hemihelp and regularly talk about my experiences, helping parents and teens out with their questions and problems. I'm a trained mentor for Hemihelp and in the future I hope to be helping out young people adapt to the challenges living with hemiplegia presents. I've met people with hemiplegia, and I've made really good friends with a couple who I know will be friends for life. Talking to others with hemiplegia has helped me cope with this condition more than I can say. It makes living with it less socially isolating and more 'normal'. I'm particularly lucky to have become friends with Steph (twitter @steph1990m) we're the same age and our hemiplegia's are scarily similar, so she has become a great source of support. I wouldn't have these great opportunities and friendships if I hadn't of realised that it's a positive thing to talk openly about my disability. 

I think I've rambled on enough, but i just wanted to write down some words ahead of hemiplegia awareness week. If you have ANY questions about hemiplegia please feel free to tweet me (@thisisamy_)

Tuesday, 1 October 2013

Things I have learnt about having cerebral palsy

October 2nd is world cerebral palsy day. I think this is a great initiative, cerebral palsy is the biggest cause of childhood physical disability. It affects more 17 million people worldwide. Yet, despite it being such a common condition, I feel that there's a lot of common misconceptions about cerebral palsy, and I think it's quite misunderstood among the public. As a young woman with cerebral palsy I feel that it's an endless learning curve. I am always learning new things about this condition and how to cope with it. 
(some general pointers about cerebral palsy (source - world cerebral palsy day)

Today I want to share with you some of the things I've learned about having cerebral palsy, just to show you the complexities of this condition, and to help others understand it better. 

  • Cerebral palsy is non progressive, but the physical symptoms of this condition aren't static. I have spastic cerebral palsy which means my muscles are affected by spasticity, this makes them tight and can cause contractures and joint deformities. Sometimes my muscles are less tight than normal, depending on my treatment regimen. A good example of this is when I have botox injections, these temporarily make my muscles less spastic and tight which means that my pain is lessened and physio is easier to do. The key thing here is that although treatments help me manage my symptoms better and improve my quality of life, they don't give me an increased level of functioning, my impairments remain.
  • Cerebral palsy isn't just a childhood condition. Now you're probably thinking 'well obviously, there's no cure for CP.', but in my experience with healthcare, it's clear that it is viewed by many healthcare professionals as a childhood condition. I think this is because growth spurts present big problems for managing CP - in CP muscles grow slower than bones which creates complex problems. I think many medics (and parents and patients) believe that once a child finishes puberty the effects of CP will remain more or less the same and so no more treatment is required. In my experience, this wasn't case. I was discharged from my consultant aged 17, I was told I could stop wearing splints, physio was no longer necessary. Lo and behold, aged 20, I was back under the care of a consultant, my muscles had shortened to the extent that I needed four surgeries to eliminate contractures and I have accepted that I will need splints and stretches for life to try and manage my CP. Of course, what makes this difficult is that healthcare for adult CP patients is sparse. I currently see a paedatric consultant due to the lack of adult CP specialists.  
  • Everyone is affected differently. I really cannot emphasise this enough. In the past couple of years, I've spoke to a lot of people with cerebral palsy through the Hemihelp (twitter @hemihelp) charity, having previously never known or spoken to anyone with cerebral palsy before. In August, a few of us met up in London and the biggest thing I took from it is how varying our hemiplegia (my type of CP) was. I'd always just assumed that everyone with hemiplegia had the same functional abilities and limitations. So I'd say that be cautious about making assumptions about how someone with cerebral palsy is affected and remember that our lived experiences of this condition will be different. Cerebral palsy is caused by brain damage, and the brain is one of the most complex things in the universe, so it kinda makes sense that CP will vary widely. 
  • The non-physical symptoms are just as important. Cerebral palsy is primarily a physical condition - it's physical effects on movement, function and posture are apparent and often very visible. However, CP very often comes with non-physical, invisible symptoms which often get overlooked. For me, I have visual perception issues which mean I cannot go unfamiliar places on my own as I cannot visualise the route I need to take. In school, I struggled with certain bits of maths which was incredibly distressing. For me, it was only as an adult that I realised that these were caused by my CP (thanks to the wonderful Hemihelp). However, these things have just as much impact on my daily living as my physical problems. I also have considerable fatigue and pain because of my CP, that makes it very difficult to function. 
  • Never understimate the importance of a support network. It's only as an adult that I've realised the importance of the support my family and partner provide. It enables me to do just about everything I do. I've also found talking to others with my condition invaluable, because it reassures me that I'm not alone, others understand what I'm going through, and can give me advice. 
  • Cerebral palsy doesn't define me. I am not just my cerebral palsy diagnosis, I am a person in my own right. I can still have similar ambitions as others my own age. For me, the past three years have been spent going through surgery and other treatments, I've had to put my life on hold that I sort of felt cerebral palsy was dominating my life. I've come to accept that there will be times where CP makes my life tricky, and it can be a headache trying to figure out how to manage it and get on with life, but it's important to remember it's not all that I am. 
These are just some of the lessons I've learnt about cerebral palsy in the past year or so. Feel free to tweet me (@thisisamy_) if you have any questions.