Hemiplegia and Mental Illness...

Hi, first off let me say a huge thank you to everyone who gave me amazingly supportive feedback on my blog post about hemiplegia. I was overwhelmed, and honestly never expected it. So, as you know I'm writing my thesis on the psychological impact of cerebral palsy, for which I'm doing a lot of background research. So I've been inspired to write about the link between my type of CP and mental illness. This is something which I have a wealth of experience on, so I figured I'd write a bit about it. 


Let me start off and say that if you're not already aware I have both depression and anxiety. The anxiety I've had ever since I can remember and my depression has come on more recently. I'm currently receiving treatment for the depression and it's helped me massively. The anxiety tends to wax and wane, depending on what is going on in my life. However, I'd say I do have an anxious disposition. 


So anyway, I did some research looking at how frequently mental illnesses, mainly mood disorders coexist with hemiplegia and the results blew me away. One study by Goodman (1996) found that in their sample of children with hemiplegia 61% had some form of psychological problem, which is huge. Let's not forget that this number may be under represented as not all people feel comfortable talking about their mental health. There's also been research showing that kids with hemiplegia tend to have higher rates of psychological problems compared to other kids with different types of CP, and also those who are similarly disabled but not by hemiplegia. This seems to suggest that there is also damage to the brain in the part controlling cognition and emotion as well as damage to the brain which results in hemiplegia. Of course, because mental illness is largely invisible and sometimes difficult to diagnose it is harder to establish the link and causality. Needless to say, I was shocked when I read this. A part of me was a little angry and relieved at the same time, because it would have helped if I'd known sooner that there was a convincing link between hemiplegia and mental illness.  If  the results are repeatedly replicated I'd say that mental health screening would be a good way to go. As well as publicising the link between hemiplegia and mental illness.


I do of course think that there are other reasons as to why mental illness seem to be more prevalent amongst the milder forms of cerebral palsy like hemiplegia. It's quite difficult to word this and get the tone right. In my experience, I've always been compared to able-bodied people. I went to mainstream school, I've done very well academically. Sometimes I've struggled to come to terms with having a disabled identity and the fact I do have limitations. Partly because, throughout my childhood I was like every other child. Ok, some things were difficult/impossible due to my hemiplegia but for the large part I was 'normal'. It's only as an adult, that I realised it was a struggle to keep up if you like. I hate to admit it, but my independence does have a limit. I'll always need help with certain things like tying shoe laces, with meal preparation, domestic chores,  I could go on. I've realised it's going to be tough out there in the workplace for a graduate, let alone one with a disability.  Due to fatigue, I've realised working part time is probably my most realistic option. I've realised that if I have children, I'll need a lot of help caring for them. If I learn to drive, I'll need an adapted car. So my disability does have a major impact on my life, however much I try to deny it. I'd be lying if I said this wasn't difficult to accept when I was in my teenage years. It can be quite anxiety provoking knowing that you rely on others for help, yet are expected to fit in and participate in the mainstream environment. 


I think my card has always been marked mental illness wise. My anxiety has always been with me. Even as a small child. I tend to be quite irrational and I do have a tendency to catastrophise and blow things out of proportion. My anxiety was probably at it's worst when I was around 16. My anxiety was centred around my health. I was constant convinced I had a serious illness. I get  frequent pain because of my hemiplegia and the muscle tightness it causes. I also get repetitive strain injury in my right hand frequently as it does so much more stuff than it probably should. At the time I didn't realise it was my hemiplegia causing such pain, I was googling my symptoms (never do this!) and getting horribly scary results. The doctor's didn't tell me it was my disability causing the pain but I figured it out for myself eventually. 


When I went to university I did have counselling to help me get to grips with my anxiety (CBT has stupidly long waits) I'd say it helped me understand why I have anxiety but long term it hasn't really helped. I have accepted now that I will always be vulnerable mentally. Like having hemiplegia, having a mental illness is a constant learning curve. I've been told that having hemiplegia does put me at increased risk of depression and anxiety because my brain is more sensitive to changes in brain chemistry. I suppose it makes sense. Having depression has took  me on a journey of self discovery and is teaching me life lessons. It's okay to ask for help if I'm struggling. There's really no shame in it. My self esteem took a bit of a battering thanks to depression. For a long time I thought my ambitions to be successful were unrealistic. Now I realise that's really not the case. 


I've also realised I don't always have to put on a brave face when it comes to my hemiplegia. Living with a long term condition can be tough and frustrating at times. You live with it day in ,day out, there's no respite. I've always felt there's something wrong about complaining about my hemiplegia and if it causes me pain. Purely because I used to get told 'there's always someone worse off than you" While yes I agree, saying things like that is wrong on the basis that it makes you feel guilty for how you feel and to dismiss real feel feelings as trivial and selfish is harmful long term. No-one is super human when it comes to dealing with their problems. 


Sorry if this seems an overly negative post. I just wanted to highlight that mental illness commonly co-exists with hemiplegia, and to explore the reasons why this may be the case. Of course, there's no shame in having a mental illness, they are extremely common and are treatable. I think exploring why mental illness appears to be so prevalent in hemiplegia cerebral palsy is important. I think in doing so, we can maybe tackle the causes and hopefully this may reduce. I am perfectly okay talking openly about my mental health. Mainly because I think it encourages me to be a more open person. Also because talking openly helps break down the stigma which wrongly surrounds mental illness, and it may help others. 


Thank you for reading,


Amy.


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Public Transport and Hemiplegia.

Public transport seems a terribly dull subject to write a blog post on, however, as a person with a physical disability it is a bit of a big deal, so bear with me. Now, a couple of months back Channel 4 launched the 'No Go Britain' campaign with the aim of highlighting how difficult public transport can be for people with disabilities. Now a lot of this campaign focused on how wheelchair users were very often subjected to discriminatory behaviour. It's scary how seemingly ignorant our society can be at times. Today I want to highlight my own battles I've faced whilst using public transport. Just to give a perspective from someone who is on the milder end of the physical disability spectrum, if you will. The issue of public transport for me is more complex than at first it appears. 

I rely a lot on public transport as I'm yet to pluck up the courage to learn to drive. I find that buses present the biggest issue for me. Put simply, I don't think hemiplegia and buses are a great combination. My hemiplegia means that my balance is very poor and I'm unsteady on my feet. Therefore, I feel it is safer for me to sit right at the front at the seats allocated for elderly people and people with disabilities. However, I don't use any walking aids and unless I had my splint on you would not notice I had a disability when sitting down. This isn't as great as it first appears. I quite often feel awkward sitting there because if the bus is busy and there are elderly people getting on I can feel people glaring at me for not being polite and giving up my seat. Believe me, if I could, I would. So I just kind of sit there and stare at the floor. If I was asked to give up this seat, I would simply reply that I'm disabled and so it is not possible. 

I also have to sit at the front for the safety of the other passengers. My hemiplegia means that I can't control the movement of my left arm, and due to the spasticity my arm is constantly bent. I find that if I sit further back, my left arm will often knock people as due to my balance issues as well I find it difficult to walk down the aisle. This is really embarrassing when this happens as it's not as if you can stop ans explain to every passenger you knock that it's because of hemiplegia. Another issue with buses which makes me really cross is the impatient bus drivers. It is seemingly unacceptable to press the bell and remain seated until your stop. The bus drivers will  not wait for you. So I have to risk a fall and get up early or risk missing my stop. No matter how many times I do this, it always provokes anxiety. It can be really difficult to remain upright when trying to walk whilst the bus is moving. Plus the fact I'm one-handed means that I can't hold on for support and I'm also trying my best to not knock someone out with my left arm. This is why I sit at the front of the bus! 

I hear you say, why don't you just get a taxi? well, taxis are expensive! I typically only use taxis if I'm travelling at rush hours. I find it's not worth the hassle of the bus during rush hour. I'd never get a seat and I'm not confident in asking someone for their seat. I also use taxis if I have bags to carry because bus travelling here is physically impossible. I  use taxis if I find the place I'm going to is a long walk from the bus route. Taxis are my favourite way to travel as it eliminates the politics of bus travelling and the stresses of worrying if I'm going to fall. 

Now onto trains. I use trains quite a bit from travelling to and from Shropshire and Liverpool. Due to my visual perception issues I would never be able to go somewhere unfamiliar alone on the train, as I would get lost. This took me a long time to accept, however I'm lucky to have an amazingly supportive boyfriend and family who will accompany me on journeys to unfamiliar territory. In general the visual perception difficulties mean that going to new places means a trial run there and back a couple of times to get my bearings.  I find that due to only having one functioning hand, I do have to limit what I carry on train journeys. Although, you can't go wrong with a backpack. This meant that in my undergraduate days, my Dad used to have to make a 100 mile round trip to pick me up with my stuff during Christmas and Easter holidays as I couldn't carry things onto the train. Like buses, I also avoid trains during rush hours. Purely because I get panicky in crowds as I feel vulnerable like I'm going to get knocked over or something. If I'm carrying bags I find it impossible to use the escalators. The ones at Liverpool Lime St are massive so I really have to concentrate using these. Luckily, I find Merseyrail staff ever so helpful and they have asked me a number of times if I would like assistance. I'm always grateful, and never offended when people offer help if they notice my disability, as at the end of the day, kindness makes the world a better place.

I think that's all the issues I've encountered whilst using public transport. I think it's made me want to learn to drive! But yeah, I guess I wanted to highlight how something as simple and everyday as public transport can present a wealth of issues if you do have a disability. It can be anxiety-provoking at times. I guess it's more the fear of what may happen, such as a nasty fall, or if I hurt someone accidentally by toppling on  them. Also it's also my own insecurities such as not feeling I'm disabled enough to sit at the allocated disability seats, and the fear that people are judging me.  (the universal sign for a disability, is a wheelchair user, so go figure) 

Anyway, I think I've rambled on for long enough about this subject,

Feedback and comments about my experiences or your experiences as a disabled passenger are welcomed of course!

I promise I'll blog on something more interesting next time!

TTFN 

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Hemiplegia.

Adam and I at our graduation, July 2010.

Today I want to blog about the condition I was born with, left hemiplegia cerebral palsy. My inspiration behind this idea was that for my MSc degree, I'm currently writing a thesis on how cerebral palsy affects the self esteem and identity of adolescents, and it put me in a reflective mood. I don't often think about my condition, as I'm so used to having it, it's my normality. 

Cerebral palsy is the most common cause of childhood physical disability, affecting as many as 1 child in 400. My type means that my left side is affected. It's effects mean that I can't use my left hand, I can walk, but I walk with a visible limp and walking is slow and tiring. People with CP use 5x more energy to move about than 'normal' people! My posture is also affected, I sit very slouched putting all my weight on the right side and I do have a curvature of the spine called kyphoscoliosis, this means my back is hunched over and curving to the right. This is caused by muscle imbalance between my left and right sides. My muscles on my left side are affected by something called 'spasticity' which basically means they're very tight and if they're not stretched out my joints can get stuck in contracture. Which usually needs surgery botox injections or stretching plaster casts to rectify the situation. I also have a leg length discrepancy which is apparently helpful for me I also have some quirky fingers on my left hand, they're double jointed so I can bend them right back, secretly I love this as it freaks people out. I also have reduced sensation on my left side. I can sit in front of the fire and not get feel myself burning. When I was small, I broke my left arm and it went undiagnosed for eleven days, rather scarily, I still had my regular physio and stretching during these days. 

My hemiplegia also has unseen effects that if I'm honest with you, I find more difficult to cope with than the physical effects. I have anxiety (and now depression) that has been with me ever since I can remember. I also have visual perception issues. This one is tricky to explain. Basically I can't do things like read a map, following directions. I can't do certain things in maths like algebra or symmetry because my brain cannot translate the information. I'm still adapting to this one, as I only found out from talking to others with hemiplegia that this was related to the condition. I thought it was me just being stupid. I guess the unseen effects are harder to deal with because it's difficult to get people to understand, as it's invisible. 

My hemiplegia was diagnosed at 9 months, after a relative noticed I wasn't using my left hand. It's not known what caused my hemiplegia. I only weighed 4lb 4oz at birth. I was a tricky delivery too - an emergency C- section, I also had to be resuscitated at birth a few times. However, one Dr suspects my CP is the result of a bleed on the brain when I was still in the womb, because of a seatbelt injury or something. I don't dwell on the cause because frankly it does not change the result. I do have a curious mind though, and would like to get a brain scan one day as I'd like to see how my brain is different.

I've had various treatments to help me cope with the physical effects of hemiplegia. I used to go for weekly physio from my diagnosis until I was 14. I've wore splints on my leg and my arm for most of my life. I have a real hit and miss relationship with them. Sometimes they help, other times not so much. I've had countless amounts of botox injections. This stuff had medical uses before the beauty industry waded in. I had amazing results the first time I had it in my hand (luckily I have general anaesthetic for the jabs!) my hand was straight for the first time in my life. Not ashamed to say I cried tears of happiness. Previously, my hand was completely bent under. However, I think I've now got an immunity to botox as the effects have lessened considerably.

I've had numerous operations to get rid of contractures. I've had my achilles tendon lengthened, with amazing results. I used to tip toe walk now I do not. I've had my calf muscle stretched - this was a failure. As an adult, I've had a wrist fusion done - my hand is completely straight now and does not bend at all. This surgery was the best decision I've ever made. I've had my bicep muscle lengthened, mostly to ease pain that my elbow contracture caused me. In February this year I had the tendons lengthened in my fingers and muscle removed from my thumb to stop it pulling inwards so much. Unfortunately my finger tendons might need re-lengthening as they're pretty determined to stay curled under. I'm now waiting on further surgery on my leg, I'm having my calf muscle re-lengthened and a tendon transfer to correct drop foot. I'm feeling pretty excited for this surgery, as it promises big results. All being well, I'll be free from splints forever! I've been warned by other people that the rehab is pretty brutal and long winded but I'm up for the challenge! 

I think having hemiplegia has contributed considerably to who I am as a person. I've had no choice but to be a determined person. I might have a degree but my proudest moments in life are learning to swim and riding a bike without stabilisers. I was told by my physio these would be impossible. To be able to prove to people that they're wrong is a great feeling. 

It's only in my adult years that I came to see myself as a person with a disability. I guess as a child I thought nothing of my parents helping me do stuff like cutting up my food, tying my shoe laces, doing my physio. I thought it was 'normal' it was only after I wanted to go to university that it hit home that I do need help everyday I suppose I took my Mum's help for granted. However talking to other people with hemiplegia, this seems a common trend. I guess you go through a journey with this condition, you develop as a person and the way you see yourself changes. I often get greeted with the word 'sorry' when I tell people I have CP. I can hand on heart say I've never wished my life was different. To me, it is completely normal not to be able to use a hand. If some miraculous surgery to restore it's use was available, I would not take it. I can't even explain the reason why I wouldn't take it because I don't know why. 

my super straight arm after surgery last year. 

Having hemiplegia is a constant learning curve. For the first time in my life I'm talking to people who have hemiplegia on the internet. I'm a proud member of the Hemihelp charity, and through them I've met people who are like me. This has helped me so much, as it can  be quite socially isolating not knowing anyone who has the same medical condition. It's great to interact with parents of kids with hemiplegia and to help them understand how their kids feel. I'm also constantly learning new things about hemiplegia as it is a more complex condition than it appears on the surface.

I'd be lying if I said I didn't worry about how hemiplegia and my future fit together. I worry about how it impacts on my career choices, I don't think I'd be able to work full time due to the sheer exhaustion I'd experience. I want children, but I constantly think how I'd manage. I think it's only natural to worry though, and talking to others with Hemi definitely helps calm my fears. 

I know I'll manage. When I was younger I could never have imagined me being in a relationship for six years, moving to Liverpool on my own. going to university, never mind studying for a Masters degree, so I guess the other things in life that I want will happen just as these things did! and as I said before hemiplegia is a journey, and it's great to reflect on the progress I've made, makes me worry far less about the future.

Thanks for reading. 

Feel free to ask any questions. 

TTFN

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Depression : ultimately a positive thing for me.

Today I thought I'd do a post about depression. I have two reasons : 1. it's good for me to reflect on my journey with this illness. 2. By talking openly about what depression is it's breaking down the unacceptable stigma which surrounds this illness.

So I'll start at the beginning of this journey. I was formally diagnosed with depression at the beginning of April this year. Originally I went to my GP thinking I had anxiety (I've suffered lifelong on/off with anxiety) but after much reflection it turns out it was actually depression. With the beauty of hindsight a diagnosis of depression makes perfect sense. I reckon my depression crept up on me slowly for at least 18 months. The symptoms were staring me in my face. I remember right in the early days in April, one health professional said I was textbook depression/anxiety. 

The scary thing about depression is that the symptoms can be subtle, until one day it can get too much to deal with.  Upon reflection, the symptoms I had were constant worry. I would worry about everything, even small seemingly insignificant things. When I look back it was totally out of hand, for example, I wouldn't answer the buzzer to my flat door because I was scared it would be someone trying to attack me, now when I look back this is totally bizarre as I had no evidence. My worries would snowball until I'd be blowing everything out of proportion.  Loss of interest in my hobbies. I'm a massive F1 fan, I love it. However, I found myself not really getting excited for the new season. I also love cooking making new recipes, however in the months preceding April I found myself not wanting to do any cooking, and not trying anything new. My partner Adam would just be lumbered doing most of the cooking. I would also make excuses not to go out and see people. Putting myself down constantly with negative thoughts. I'm talking all the time. I used to have negative thought patterns that studying for my degree was a waste of time as I'd never amount to anything. This is out of character for me as I'm a very ambitious person. I never normally put boundaries on myself. However, from at least 2010 (since I finished my under grad degree) I was telling myself that I was just a burden to everybody. This kind of thinking is exhausting, and ultimately it's like a self fulfilling prophecy. If you think bad stuff, bad things will happen. Aches and pains. I definitely had physical symptoms, I got loads of back aches and just felt generally tense. I also had a knot in the pit of my stomach the whole time. These were my main symptoms. You have to remember they built up very slowly so I thought these were just my personality, not an illness.  

When I look back, it's not surprising I got depression. 2011 was a pretty horrendous year for me. I had two operations, a load of failed botox injections which meant I had to go back onto the waiting list for more surgery. My parents separated and my Grandad passed away and I moved house. Studying for a masters degree. All in the space of twelve months. I didn't allow myself to cry over these things I literally just said 'It'll be alright in the end' so I guess in April my mind just kinda said 'Look Amy, you need a break love' So basically in April I got the most severe bout of anxiety yet, I couldn't sleep, I couldn't eat. The GP put me on anti-depressant medication. The first lot of anti-depressants actually made me worse, but I've found my perfect medication now and it's helped me massively. Those few days were the hardest of my life as I felt like I was never going to feel normal again, but somehow I pulled through.  I also had to leave my university course temporarily to recover.

Depression has taught me a big life lesson, I'm actually grateful that I got it. I feel relieved in a way that I know symptoms I experienced were just because depression is an illness and it's not my personality. It's taught me to just let things happen and to live in the moment. I no longer look as far ahead as I used to, because depression has taught me in life unexpected things can happen. Worrying is a waste of time. I cannot emphasise this enough. Worrying is wasted energy. Why worry over things that might or might not happen? Might as well deal with it if it happens. Put yourself first. Yes, because in sometimes in life you have to put your own well being first. I spent so long listening to everyone else's stresses I forgot about my own needs. I've also got my passion for baking and cooking back and I'm more passionate than ever before. So ultimately I do think depression can be a positive experience, because if I hadn't have sought help then I would never have fixed these problems. At last I'm enjoying life and being 23.

I'm not running before I walk though. I do still have bad days, but they're outnumbered by good ones. I still get a bit doubtful over whether I can complete my degree, but I know deep down I can. With the recovery of depression you have to give it time and small steps at a time. I'm a little nervous about relapsing, but know I know the symptoms I'll get help much earlier. I've also got a big operation in August and my mobility will be compromised for a while after, so I worry I'll get low after, but I'm working on a plan to keep me occupied. I think as long as I remain aware that to be mentally healthy is as important as being physically healthy I'll be okay.

Thanks for reading. I do urge you to get help if my symptoms ring any bells with you. There is no shame in visiting a GP about mental health. 1 in 4 will suffer from mental illness (that's just the diagnosed cases!!)

TTFN

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