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My Pain Story- Part One

I have had a very slight worry in the back of my mind for years that one day my posture issues would get a lot worse.  Having had previous issues with my posture in various ways I knew that it was only a matter of time before they would flare up again.  So I kept up my physiotherapy exercises for it even after my previous shoulder and back issues had died down.

Previously in my mid-twenties I had a frozen left shoulder that caused me some real problems for a couple of months or so.  Weekly physiotherapy including the use of an ultrasound machine used for massage helped a great deal, alongside doing daily exercises.  Since then I have been back to physiotherapy for shoulder and neck pain that I wanted to prevent from getting worse. 

However, the exercises only keep the problem at bay for so long before they flare up again.  Now I have major pain down most of my left side.  I have had minor twinges and aches most of my life, but last June was when I noticed things getting significantly worse again.  I was having more than my usual amount of sore hip muscle issues and the pain was a little different to just muscle weakness.   Then when my back became agonisingly painful on my usual walk home from town I knew that something was not right.    

So I booked an appointment with my GP.  She thought it could be the curve in my spine pushing on a nerve sending pain across my left side.  I was told to book with physiotherapy and to come back in if I felt I needed stronger pain medication than over the counter stuff.  Even booking with physiotherapy was easier said than done, with the self-referral system we have in our area, and when I did get an appointment they were so busy it was a wait of almost a month to actually see them.

Meanwhile my pain issues were getting worse.  Not only did my lower back and hip area hurt, but the pain was spreading.  Firstly down my leg to the ankle, then to my shoulder and neck and then my arm and even my left hand started to hurt.  The last straw was when my left hand became so weak I could no longer fully use it without pain.  This was the point I decided I needed stronger pain medication and went back to the doctor.  I was given Gabapentin tablets, which are specifically for nerve pain. 

I eventually had my physiotherapy appointment.  The physio agreed my posture is bad, but was unsure that I actually had scoliosis and was not sure that it was a nerve issue.  She referred me to orthopaedics since I had never actually seen them about my back and posture specifically before.  That meant more waiting for another appointment. 

I knew Gabapentin tablets take a few days to have much effect, but after nearly two weeks I still had no relief from them.  I decided the physiotherapist was probably right and it might not actually be a nerve issue, as the pills do not work on other types of pain.  I managed to get a phone appointment with a GP for different pain killers.  I ended up with prescription strength codeine based medication, which is helping my pain, although not as effectively as I would like.  I also worry slightly about being on them too long as they are an opioid and opioids are seen as quite dangerous to be left on long term. 

By the time I had my orthopaedic appointment it was September.  The orthopaedic specialist confirmed it is definitely not nerve pain and not scoliosis.  He suggested one of my issues could be tennis elbow, which to me sounded a bit odd as my elbow is one of the few places I do not have pain.  He seemed to think I have a series of different things which may be triggering each other.  He told me I have over reactive reflexes, but never told what, if anything, this could mean.  So after a thorough examination from both a physiotherapist and an orthopaedic specialist I was left with tennis elbow and over reacting reflexes, not really all that helpful.   

I was advised to attend the pain clinic.  However to do that I needed a GP referral, which meant waiting two and a half weeks.  What was even more frustrating was when I finally did hear from the pain clinic I had to ring them just to confirm I still wanted an appointment and to pick the hospital I wanted it at, then I was finally put on what I gather is a rather long waiting list to see them.  So I still do not have my appointment with them yet!

Then my right shoulder started to hurt.  I put this down to either sleeping on it badly or over compensating for the left, but the pain did not go away.  When it spread down the arm and to my right hand, with pain exactly like my left side I knew my pain was no longer isolated just to my left.  As frustrating as having a painful and weak left side was, now both sides are bad it makes daily functioning really tricky.  So far my right leg is pain free, and hopefully it will stay that way as my left leg has always been worse due to my hip issue and tends to be more sensitive.

Most recently I went back to physiotherapy as advised by the orthopaedic specialist.  I have been given some wrist and hand exercises to do to try to tackle my possible tennis elbow or whatever it is causing me pain in that area.  So now I do three lots of exercises that I have been given over the years for posture, leg strengthening and now hand and wrist.  If nothing else it could help to keep me functioning somewhat even if the pain is not lessoned.

I am pretty sure my posture issues stem from my hip issue causing me to walk with a limp and rather turned out gait for years and having spent a long time using walking aids in the past.  Perthes Disease might be described by experts as a childhood hip issue, but it has definitely affected more than just my hip and has left me with life-long issues.-

I am still waiting on my pain clinic appointment and will see my GP again next week.  It is all rather a tedious lot of waiting for appointments and so far not much progress, but we will see.  I will be coming back to this topic again when I have more to tell you.

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Perthes, Long-Term Effects

‘Perthes is a childhood disorder which affects the head of the femur (the ball of the ball and socket joint of the hip). In Perthes disease the blood supply to the growth plate of the bone at the end of the femur (called the epiphysis) becomes inadequate. As a result the bone softens and breaks down (a process called necrosis). Over several months the blood vessels regrow, and the blood supply returns to the ‘dead’ bone tissue. New bone tissue is then laid down and the femoral head regrows and remodels over several years. This is similar to how bone reforms and remodels after any ‘normal’ fracture or break to a bone, but takes longer,’

(https://www.perthes.org.uk/what-is-perthes-disease/)
As this quote says Perthes is a childhood condition that affects the hip in growth. However, I often come across adults talking in various social media groups as if they still have Perthes and some even swear blind they still do have it. Technically no one can have it as an adult, but you can have the after effects of having had it as a child. The after effects for me where Justas bad as the Perthes itself.


Not everyone who has Perthes will go on to have such bad after effects; some will have very little at all. It is said that the younger someone has Perthes the better the chances of a full recovery with less side effects, particularly those aged under five. I was diagnosed aged seven and my hip never seemed to grow back fully in the right shape or size.


Pain and hip replacement


I almost always had some kind of pain coming from my hip area, be it the hip itself or the weak muscles. The pain did not go away after the Perthes was said to have run its course due to the damaged state the hip was left in. Not all Perthes patients carry on having pain like I did; it depends on how well the hip grows back to its proper shape. In a lot of cases the ball of the hip does not reshape to fit the socket well, which can lead to a faltered ball, creating significant problems later.


It is said that patients who had Perthes are at higher risk than most of having osteoarthritis, one study of sixty people with Perthes put it as high as over fifty pecent and often at a younger age than normal. I was told I was developing the early stages of osteoarthritis in my early twenties. This eventually led to me using crutches on a daily basis as weight bearing on the hip became too painful. Then aged twenty-five I had a total hip replacement.

According to a fairly recent study ‘LCP patients had a significantly higher risk of THR surgery compared to sex- and age-matched control persons’ (https://online.boneandjoint.org.uk/doi/abs/10.1302/0301-620X.92BSUPP_IV.0920594c)

After my hip replacement I had a lot less pain from the hip area, but my muscles were very weak from lack of use over many years. Once I started doing more with the leg the muscles became sore. Pain after Perthes is very common in muscles suddenly being used more than they are used to. I have found physiotherapy very helpful for strengthening my muscles again.


Leg length issues and posture


Leg length discrepancy is common amongst those who had Perthes due to bone growth not being complete or loss of height due to flattening of the head. Also, some surgeries such as femoral varus osteotomy can contribute to leg length discrepancy, making it a now less preferred treatment for some surgeons.


I had a 1.5 cm difference in leg length before my hip replacement which caused me to limp. A long term limp is not good for your posture. I ended up having posture related issues. I had back pain off and on since about the age of eleven, nothing server, but early signs the way I walked was not good. Then in my late teens I started to get neck and shoulder problems which gradually got worse, till one day aged twenty-four I woke up with a frozen shoulder, which took weeks to get back to fully functioning again and still has twinges now and then.


Physiotherapy has helped a lot with my posture issues. Initially several sessions of massage using ultra sound with the physio gave me great relief, followed by doing the exercises she gave me every single day. I still do some of those exercises years later. The exercises prevent my posture issues from getting even worse and help a lot with the pain.


During my hip replacement my surgeon made sure to correct my leg length difference as much as possible, this has almost removed my limp entirely (apart from when my hip muscles are very sore).


Another thing that can be done is to have an orthopaedic lift fitted to your shoes or an insole used for less server discrepancies. An orthopaedic specialist can advise on this.


It is important to make sure any walking aids such as sticks and crutches are the correct height as this can also be a contributing factor for posture issues. I feel that years of using a cane did not help my back, leaning to one side.


Fitness and fatigue


Due to pain when using my hip much before my replacement I had a poor level of fitness. When you struggle to even walk well it can make exercise tricky. Swimming was about the only proper exercise I found that was not too painful. It made recovery from my replacement surgery slower as not only were my leg muscles weak, but I had become used to not walking very far at all. I had to build up my fitness levels again. Physiotherapy, aqua fit classes and walking more helped with this.


Another reason I was so unfit was the fact that I was tired most of the time. Constant pain is exhausting. Pain can affect your sleep, making it hard to get comfortable and fall asleep. I found when very tired my hip hurt more, making it even harder to get to sleep. I was also on some strong pain medication which probably contributed to how tired I was feeling. Fatigue made getting much exercise and doing much at all hard work.


Surgery outcomes


According to my research it does not seem to make much difference if Perthes patients have surgery as a child or not long term. Recent studies are now showing that surgery seems to be a short term solution and that in fact some surgeries such as osteotomies can make later surgeries trickier. In a lot of cases it is hard to know if the hip would have grown back and recovered anyway given time as it sometimes does in those without any surgery.
http://www.harboursidephysiotherapy.co.uk/Injuries-Conditions/Hip/Research-Articles/Hip-Replacement-for-Adults-who-had-Perthes/a~4365/article.html

Pedestrians and Roads

Image result for road crossing disabled

A lot of disabled and more vulnerable people do not drive.  This can be due to being physically unable to, learning difficulties or costs.  I cannot drive, so chose to live in a small town where most things are walking distance and the public transport links are good.  However as a pedestrian I often feel that walking is less safe than it should be when it comes to roads.

Crossing the road can be very tricky at times.  Some drivers seem to drive like they are the only people in the world that matter or that no one else could possibly exist outside their own car, at least that is how it can seem at times to me.  Some drivers act as if the rules of the road are there to pick and choose from as they like, that or they forget some of the rules as soon as they pass their test.  I am careful when crossing the road, looking both ways and waiting till it is clear.  Although it does not matter how careful I am if a car comes careering around the corner without slowing down when I have already started to cross.  I can dash out of the way if I need to and step back, but for some this is much harder.  Some people with mobility issues can struggle to get out of the way in time.

I can decide it is safe to cross as the car is clearly going the other way, but then it turns out they are coming my way, they just did not indicate.  An awful lot of drivers do not indicate at turnings.  On very busy roads this is a problem as I can wait a very long time for there to be no cars at all and it would help to know I can cross when cars are going the other way.  I am sure other drivers would also appreciate if other cars indicated as they should.

Where possible I will use a crossing such as a zebra or pelican crossing, as it usually makes crossing the road far safer.  Most drivers are good at stopping for them if someone is waiting, but I have known drivers to ignore crossings, especially zebra crossings.  This is rude and dangerous.  I also do not like drivers who creep up closer and closer to me at crossings as if to get me to hurry up and walk faster.   I may be walking as fast as I can already, since I get days when my leg muscles are more stiff around my false hip and lots of people struggle with walking fast.

Road side parking is also an issue drivers need to consider with pedestrians in mind.  Parking on the pavement can be a serious problem for some disabled people.  I am able to walk around a car, either by squeezing past it, or by walking onto the road, but a lot of people cannot do this.  Wheelchairs, mobility scooters and walking frames can make it impossible to get past a car or anything blocking the pavement.  When it is a busy road I dislike having to walk on it and some less able people find it very scary.  Parking in front of drop down curbs can also prevent some disabled people from getting to their destination.  When a driver says ‘I’m only going to be five minuets’, that is no excuse.  That five minutes might make the disabled person late for an appointment or miss the bus.  Anyway, why should they have to wait for you?

I do not totally blame drivers; some roads are poorly designed for the pedestrian.  It can seem on some roads as if adding a pavement was an afterthought and the need to cross the road never even occurred to the planners.  In my town there is a road I often need to cross that has four directions a vehicle can come from and I cannot even see one of the directions clearly.  Then there are roads where the pavement just runs, so if you do not know the road you can end up in a very difficult situation.

Another issue planners often fail to think about is adding any kind of walkway in car parks.  Having to cross a car park on foot can be hazardous with drivers not always fully paying attention yet, doing up seat belts or setting sat-nav.  Even at 5mph being hit by a car hurts.  There are quite a few places that have car park right in front of them that you have to cross in order to get to them, often railway stations.  Having been hit by a car in a railway station car park, I know I am lucky that I only got bruising to my leg, but some disabled people might not come off so lightly.

Some pedestrians could help themselves more.  I have often seen people cross down the road from a proper crossing just to save walking a few extra yards, even on very busy, fast roads.  Some people have music on far too loudly in their headphones preventing them from hearing oncoming traffic.  On some roads you can hear traffic before you can see it.  Pedestrians need to pay attention when walking by roads and especially when crossing.

Drivers need to pay attention to what is going on around them outside of their vehicle.  This includes in car parks and places you may not expect to see a pedestrian.  Drivers need to think when parking, can a wheelchair get past?  Is there a drop down curb I might be blocking?  It is important to remember a lot of less able people walk and need to get where they are going safely.

The person behind the blog

About-me.png

I thought it would be good to share more about me and my personality so you can get to know the person behind the blog. These are words and phrases I associate with myself.

  • Total Hip Replacement/ Perthes Disease– As of August 2011 I have had a false left hip, done aged 25, made of plastic and ceramic with a metal stem. I had it done due to osteoarthritis in the hip brought on early by childhood hip issue Perrthes Disease.

  • OCD– Obsessive Compulsive Disorder, diagnosed aged twelve.

  • Autism/ Aspergers– I was diagnosed aged thirty-one, but have suspected I have it for years.

  • Disabled- I am less physically disabled now than I used to be thanks to my hip replacement, but know that it will not last for ever. Also my mental health can make me feel somewhat disabled at times. Autism is not a disability as such if you see it as just a different way of thinking, but it is often classed as one such as when applying for benefits or educational support.

  • Social Housing– I live in social housing,which is what used to be known as council housing in the UK, but now run by different housing associations. I have been living in my one bed flat since Easter 2016 and I really like it.

  • Benefits– I receive government benefits. Currently I get Employment Support Allowance as for various mental health reasons I can not work full time right now. I also get housing benefit to help with my rent. I have in the past had Disability Living Allowance, now changed to Personal Independents Payments, but I am not eligible for it at this current time.

  • Volunteer– I have been volunteering for various local charities and good causes since I was seventeen. It helps me to get out more, make friends, learn work related skills and add to my CV. I currently help a community craft shop, do administration work for my local community centre and help another charity run their Facebook page.

  • Drama Degree– I graduated the University of Lincoln with a BA (Hons) Drama degree in 2011. I really enjoyed my three years there.

  • Sister/ Aunt– I have one older brother and am an aunt to his two children, a nephew and a niece. I love being an aunt.

  • Devon– My home county where I lived all of my life, apart from time away for university.

  • Crafting– I have been making cards to send people for years. I now also make small things to sell under the name The Gothic Butterfly. I have a small shelf in a local craft shop and a Facebook page. I decorate gift boxes and bags, make gift tags, book marks and other small objects.

  • Colouring- Now it is very popular to do adult colouring, but I was doing it before it was so easy to even get adult colouring books. I find it helps me to relax and distracts me from my anxiety.

  • Theatre– A life long love of mine is going to the theatre to see many kinds of performances. I love musicals, plays, ballet and modern dance. I also enjoy some opera and stand up comedy, although I am a bit more fussy about which of these I would go to see.

  • Pub Quizzes– I enjoy going to various pub quizzes regularly with a group of my friends. Not only is it fun to take part and test out how much general knowledge I have, it is a good way to socialise.

  • Writer– I have always enjoyed writing and have had good feedback for my writing more so than anything else in my life. As well as this blog, I write a daily diary which I helpful to explore my thoughts and feelings. Writing for me can be kind of therapy. I also have pen pals around he world I write letters to.

  • Internet– I love the internet, it is somewhat of an addiction for me I admit, but it has been such a help to me during low periods of my life I do not care. Social media is for me a tool that I can use to express myself and keep in touch with friends which as an autistic person I always find quite tricky. I mainly use Facebook, but I also occasionally use Instergram for photo sharing. I obviously use the internet to share this blog and like most people use email. I also use the internet for a variety of other functions which I have written about before in a previous post.

  • Cafes/ Coffee Shops– I really like to drink coffee and hang out in coffee shops. Although I do go to pubs sometimes, I tend to spend more money and time in cafes. I often get quite tired from my mental and physical health issues, cafes are a good place to go and recharge my batteries when out. I like the relaxed, often friendly atmosphere of a cafe. I also really like coffee and cake.

  • Television– I watch a lot of TV. I find it helps with my mental health to distract me from my own anxious thoughts and not over think negativity about things in my life. I also really enjoy certain programs. I really like Call the Midwife and Doctor Who. I like some documentaries and have learnt a lot from watching many on the BBC. I also like some sitcoms and animated comedy such as American Dad.

  • Music– I enjoy listening to music a great deal. My favourite bands are The Rasmus, a Finnish rock band and Train, American soft rock. I enjoy the music of old bands such as Pink Floyd, the Kinks and the Mamas and the Papas. I like a lot of funk music from the 1970s and 80s. I like a lot of musicals show tunes. Also when in certain moods I enjoy classical music.

  • Cheese– A life long love of mine is cheese, I even ate strong blue cheese as a small child. I am yet to find a cheese I do not like (apart from goats cheese, which has an after taste I dislike).

  • Dark Purple– This has been a colour I have been drawn to all of my life. I like it in nature, in things that I wear and around my flat. I am not sure why this is, but I remember liking purple things from a very young age.

Writing this you would think would of been easy, but it was harder than I thought it would be.  I had to work out how much I wanted to reveal about myself and what things I even do associate with myself.  Other people may associate different things with me, but this is how I see myself.

Common Sense and Respect for the Disabled Please

This is a rant, a rant about things disabled people hate, at least some disabled people. Not everything on the list will affect all disabled people and these are just what I have experienced and observed.

People who judge others for using disabled facilities such as toilets and parking spaces without knowing them. I used to have a disabled parking badge due to not being able to walk very far without getting tired or in pain, but I did not always use a walking aid. Sometimes people would stare at me as if to say, why have you got a badge when you can walk. I got the same look sometimes when I would come out of a disabled toilet. They did not know me or my situation and it was none of their business why I needed to use disabled facilities, but even a look can make you feel judged. I have heard stories of people getting notes left on their cars for parking in disabled spots being accused of using someone else’s badge when it was their own!

Bus drivers who refuse to let a disabled person on as it would mean them having to get up to get the ramp out or having to ask someone with a push chair to fold it and move seats. The space at the front of a bus is not for a pushchair, the signs clearly state it is a disabled space, yet some drivers do not seem to enforce this. Bus drivers who refuse a disabled person are discriminating against them. A recent court case that went all the way to the Supreme Court found in favor of the disabled claimant in that ‘the court said the company should consider further steps to persuade non-wheelchair users to move, without making it a legal duty to move them,’ (http://www.bbc.co.uk/news/uk-38663322). So it is an ongoing battle with some drivers to get a space on a bus.

When a disabled toilet is used as a storage area or left out of order for a long time. Sometimes it feels like the disabled toilet is only there as a legal requirement and the company do not actually care if you can use it or not. For example a pub near me uses their disabled toilet to store things. You can still technically use the toilet, but the rails are blocked by things, and a lot of disabled people need the rails. My local supermarket has had an out of order disabled toilet for about a month now. Businesses are being short sighted when it comes to disabled toilets sometimes as it could lose them business. For example when I am on a night out with some of my friends, some of them are very disabled and we would choose to not go to a bar that we knew had bad disabled facilities. This would mean them losing out on not only the disabled persons custom but all their friends custom as well.

Shops that give little or no thought to disabled customers. Really heavy doors can be a  problem. When I was on crutches I used to use my body to push the door open, but with heavier doors this was tricky. For those with arthritic hands and wrists heavy doors can be impossible. Automatic doors are better for disabled customers, or at least a lighter door. Then once inside the shop the lack of space between rails or shelving can be an issue. Some clothing shops have over full rails that are too closely packed for a wheelchair user to get past. I used to knock things off sometimes in crutches if I was not careful. I have noticed that some shops have too much stock piled up on the floor between shelving units which can mean no space for a wheelchair or walking frame to turn around. Without the space to move disabled customers will shop elsewhere.

Poorly maintained pavements and walkways. Loose paving slabs and crumbling tarmac can be a trip hazard for anyone, but even more so for those with walking aids. I used to trip up on loose slabs when I was on crutches and this could hurt my hip quite a lot. People in wheelchairs can fall out of their chair if the wheels get caught up on loose slabs or in pot holes.

Dog waste and rubbish left on pavements and paths. It is unpleasant for anyone to have to smell and see, but for the disabled it can be very annoying. Dog waste can get on the wheels of someone’s chair and it can mean dragging it around. It is not always easy to see the ground right in front of your wheels to know to avoid it. Blind people also have obvious problems with dog waste since they cannot see it to walk around it. Rubbish can also be a problem since it can get caught up the wheels of a chair and then cause the chair to not move smoothly. I have noticed a significant increase in both dog waste and litter in the last few years and this shows a lack of respect for both other people and the environment.

People who park in front of drop down curbs on pavements or park on the pavement. A disabled person may not be able to cross the road without a drop down curb and may have to go an awful long way to find the next one, which could take them a long way out of where they want to be. There is a convince store in my town that people often park outside to pop in quickly, but they often park in front of the drop down curb. They often say they will not be very long, but what If the queue is long or they get distracted by something else? Parking on the pavement is just as bad as it means a disabled person may not be able to get passed. Often this means a disabled person will have to go back on themselves for ages and divert a long way round or simply not be able to get where they want to go. I have often had to walk into the road to get around a car and some disabled people simply cannot do that.

People who talk for you or to your companion about you when you are right next to them. This seems to happen especially to those in a wheelchair, it is as if because your legs do not work nor can your mind to talk properly. This is patronising and rude. When I was younger if this happened when I was with my parents I would just start talking anyway and join in showing them I was more than capable of talking for myself, in fact they might have more trouble getting me to be quite! Sure some people do have learning difficulties that come with a physical disability, but even then it still does not mean they cannot talk for themselves in most cases.

Poorly designed disabled toilets. Not all disabled people are in wheelchairs and want the sink low, in fact after my hip surgery I needed the sink not to be low as I could not bend far, but needed the rails and raised seat of a disabled toilet. Some disabled toilets are far too small for the needs of some disabled people who may need a carer to come in with them as well as space for a wheelchair or walker. A lot of disabled toilets also seem to lack a mirror which assumes disabled people do not care what they look like, which is wrong, disabled people are just as likely to want to check their make up or hair as everyone else.

People who say ‘you’re doing so well considering’ or call disabled people brave. They are very patronising things to say.  How do you know I am doing well? For all you know I am having a really bad day and on a good day you would not even notice I was disabled. How is it brave that I left the house and got on with my life? What am I supposed to do sit at home and rot? I cannot live my life not disabled so I just get on with it the best that I can.

Being accused of being a benefit scrounger. This is the big one that all disabled people hate. The media often make it seem like an awful lot more people are scamming the benefits system than actually are. The vast majority on benefits are on them legally with a good reason. Most people would not choose to be on benefits if they could help it. Having to prove yourself as ill and jump through the hoops they require to get them would put most cheats off. Being on benefits does not make me lazy or pathetic. You should never judge someone for being on benefits or any kind of welfare without knowing the full facts.

Disabled people are on the whole sensible and understand that sometimes some of these things cannot be helped under certain circumstances. What we ask for is to not let these things be issues when they do not have to be. A bit of common sense and respect is all disabled people want. Disabled people can be an active part of society, if society lets them.

My Perthes Hip Story

This is what I can remember of my Perthes hip journey.  I may have missed some things out and got some of the exact dates and ages wrong, but it gives a good idea of what I have been through with my hip.

  • I was diagnosed with Legg Calve Perthes disease in my left hip aged seven in 1993. I was referred to an orthopedic specialist who used x-rays to diagnose me.  I was told to reduce heavy impact activity on the hip.  I was never very much into sports anyway, so did not mind having to give up things like PE in school.  However I was disappointed to have to leave my ballet classes that I really enjoyed.  I remember my mum pushing me to school in a large buggy to save me walking.
  • When I was seven or eight I spent a week in hospital. My left leg was put in traction for the week, meaning it had weights put on the end to pull the hip joint out more in preparation for surgery.  They were going to put me in a broomstick plaster, but when they opened me up for surgery they decided my hip was past the point they could do anything and nothing was done.  I think it was both disappointing and a relief to not have the treatment, as those plasters look very difficult to deal with.  It might have been good to try the treatment, but having heard stories of people who were in them for ages still going on to have hip issues later it sounds like it may not have been much use anyway.  After my hospital stay I used crutches for a number of months, possibly a year or more, and then moved onto a walking stick.
  • I had for a few sessions of physiotherapy. I did the exercises they give me at home some days, but probably quit doing them far too soon and did them too sporadically.  It is not easy to get an eight or nine year old to do daily exercises.  Some days the exercises hurt too much anyway.  My mum took me swimming more often on the advice of the physiotherapist. Swimming is one form of exercise I actually enjoyed as a child.  Swimming is less painful on the hip as the water takes the weight off it.
  • Aged about ten or eleven my hip was less painful for a couple of years or so. I stopped using any walking aid and managed to get about better.
  • My hip got more painful again and I started to use a walking stick aged thirteen. My doctor prescribed me with pain killing tablets that were at a dose not available over the counter.  I go back for more physiotherapy and a few sessions of hydrotherapy.  After the sessions end I do the hydrotherapy exercises at the regular swimming pool for a while, but again probably not often enough.
  • Aged fourteen I got a wheelchair for use on my worst days pain wise. It was not for everyday use and I used it when I had to walk long distances or was in a lot of pain.
  • In my mid to late teens I started to get mild shoulder, neck and back pain. My posture started to suffer due to years of walking badly.  My limp and slightly sideways gait have made my back very slightly curved and my shoulders somewhat rounded.
  • In my early twenties I find out the pain is now due to osteoarthritis brought on at a much earlier age than normal due to the damaged state Perthes left my hip in, which I gather is fairly common in people who had Perthes. I attend a pain clinic at the hospital to try and learn to manage my pain better, but they do not tell me much I did not already know.
  • I saw an orthopaedic surgeon and ask about having a hip replacement, but was told I was too young. I continued to use a walking stick till I was about twenty-one.  I gave up the stick when it no longer helped with the pain.
  • Whilst I was at university aged twenty-four I got a frozen shoulder. It was very painful and made moving my arm and shoulder very difficult.  Physiotherapy helped a lot with ultrasound massage and daily exercises to do at home to help keep the shoulder loose.  I did the exercises every day for several months which seemed to help.  I was told the frozen shoulder was due to my posture issues from my hip.
  • I ended up on crutches aged twenty-four when my hip pain got so bad I could hardly walk sometimes without them.
  • I decided it was time I saw an orthopedic surgeon again whilst I was at university and this meant I could see a different surgeon since I was in another part of the country who might look at my case differently. I ended up being referred to two different surgeons (not sure why).  One surgeon was based at the main county hospital and the other at a specialist orthopaedic hospital.   Both agreed my hip was beyond resurfacing anymore and both agreed they would give me a total hip replacement if I wanted.  However the county hospital surgeon seemed less keen for me to have my hip replaced and tried to talk me out of it,  so I went with the specialist hospital since they seemed to think I really did need it doing and understood why I wanted it so much.  I initially met with the surgeon’s assistant who seemed to actually know something about Perthes and said he would recommend me to his boss straight away as a case for a new hip.
  • I had my total hip replacement on August 3rd 2011 aged twenty-five, a month after completing university. I spent three nights in hospital, one before the surgery and two after. The day after surgery I went to physiotherapy.  I had exercises given to me to do twice daily at home to build up the strength again in my legs.  I was given some equipment such as a very handy grab stick as I was not allowed to bend more than a ninety degree angle for six weeks, a toilet seat raise and a toilet frame to help lower myself on and off the toilet.  They were going to loan me crutches, but I already had my own pair from before.  On day one I used a walking frame to go to the toilet, but from day two I was on crutches.  I used crutches for about three or four months after surgery, and then used one crutch for a while.
  • About six to nine months later I went back to physiotherapy due to muscle soreness around the hip. I was given a new set of exercises to advance me on further with my progress.  I attended a weekly physiotherapy gym for twelve weeks at the hospital.
  • The GP referred me to podiatry as she saw I had flat feet. The podiatrist also said my feet turn out too much when I walk due to years of walking badly with my hip.  This may have contributed to my back and posture issues.  I now have insoles for my shoes with arch support and a heal slope to turn my feet slightly more forwards.  The insoles do make walking slightly more comfortable for me.
  • Just after a year after my surgery I managed a twelve mile sponsored charity walk. Aqua fit classes at my local pool helped me to get fitter and stronger.
  • I started to get mild posture pain again aged twenty-eight. I went back to physiotherapy and got exercises that I now still do daily to keep my back, neck and shoulders from becoming too weak.
  • I also go back to physiotherapy for muscle weakness around the hip as it was causing me pain on and off. I now also do a few leg exercises daily to keep my legs from getting too painful and stiff.

Remember that every Perthes story is different and what works for one person may not work for another.  Some people have more mild cases and totally recover, some go on to have mild pain as an adult, but at a more manageable level and some like me go on to need a total hip replacement.  I feel lucky to have my false hip and love how much more I can now do because of it.  I take pain medication much less frequently and even then at a much lower dose than before.  I am fitter now than I ever remember in my life.  I know one day I will need a hip revision, but I feel it has been more than worth it.

Officially a freak and relived

I have always known there was something a bit different about me and I have long suspected I have autism, but no one actually sent me for testing till I was thirty one. I had to actually ask for it and then wait over a year for the appointment at the clinic. It took three appointments, two of testing and one for the results. I had to take a close family member with me, in my case my mum and she also had to answer a load of questions about me and my childhood. (Not so easy to remember everything over twenty years later!) I am now officially diagnosed as high functioning autistic or what used to be known as Asperger’s, but they changed it to reflect the fact that high functioning covers more types of people with it. They asked me how I felt about the diagnosis, so I said relieved, it helps explain a lot about me. It also helps me explain myself to others at times and I am hoping in future will help with things like benefit claims or getting job seekers support.

Not long after my diagnosis I found a fantastic book in the library called Freaks, Geeks and Asperger’s Syndrome by Luke Jackson. He wrote it when he was thirteen and it is a brilliant insight into what it is like to have high functioning autism. I can relate to a lot of what he says and he helps me to explain things better to others. I will use some quotes from the book as jumping off points for me to discuss my autism.

AS (Asperger’s Syndrome) is usually described as a mild form of autism, but believe me, though the good outweighs the bad, there are some bits that are most certainly not mild.’ You try telling the parent of a screaming child far too old to be having a temper tantrum in the middle of the street that it is mild! I remember wishing it was less mild sometimes then at least they may have taken my problems more seriously in school, but of course I am glad it is not any worse.

When we didn’t know and didn’t have a diagnosis (or were not told about it) it was a million times worse than you can imagine.’ ‘You may think that if the child or person you are seeing has lots of AS traits, but you can’t fit them neatly into your checklist of criteria, you are doing them a favour by saying that they haven’t got it. In fact this doesn’t make them not have AS, it just muddles them up more and makes them and all around them think they are even more ‘freakish’.’ Quite a few people have asked me if I really needed a diagnosis, would it not better just to be happy with myself as I am. I get where they are coming from, but knowing is better than not knowing, as it means you can understand yourself a lot better and so can others. I remember being bullied as the class freak and weirdo. I was the odd child that did not quite fit in and I never had any way to explain myself. If I had been diagnosed it may have helped school to help me and it might have helped me to feel like at least I was not a total looser and freak.

To be on the autistic spectrum is not the same as being on death row- it is not a death sentence, it is not terminal, it is merely a name for a lifelong set of behaviours’. So if you suspect you child has autism push for them to get tested for it and do not ignore it. It is not the worst thing that they could be diagnosed with and it may even help them to know they have it. It could help them find support and maybe even get taught in school in a way that is more useful to them.

I can imagine how adults have gone all their lives confused and misunderstood would seem as if they had a severe mental illness. I am sure it would cause depression too.’ I have suffered from depression in the past and have anxiety issues which I am sure are not helped by my autism. I think that if I had been diagnosed and helped at a younger age it might have helped me to not develop such bad mental health issues. Not knowing what was wrong with me as a child did cause me to feel very isolated and frightened at times, which I know made me more of an anxious person and depressed.

I just have to talk about it and the irritation at being stopped can easily develop into raging fury.’ I have always been known as a chatterbox, but for me not talking as a child just seemed wrong, if I had a thought I had to express it out loud. To not be able to express my thoughts was very upsetting and I felt like if I did not express them they would get louder and louder in my head till they were too much to handle. I used to get very angry if I was interrupted or prevented from talking to the point I would scream and shout just to be heard. Although I still talk a lot, I no longer feel I have to express every single thought that comes into my head and have learnt to be quieter in some situations.

Seem to speak rather differently and have difficulties understanding a lot of other forms of communication such as facial expressions and body language. These can be learned to a certain extent I think.’ I now think I am quite good at recognising facial cues and reading body language, but it took years of practise to get this far. I sometimes struggled to understand people when they were not being literal. People seemed to make jokes about things that I did not find funny at all. I understood that it was sarcasm, but I often found I did not like the joke. I think my performing arts and drama studies have helped me a lot in understanding body language, expression and emotion in others.

It seems as if the taste buds are over or under developed.’ It is to do with the presentation, the texture and the smell of food as well as them needing sameness.’ I had a huge thing about the texture of my food as a child, I hated any lumps or bits at all, I even hated bread with seeds in. I wanted all my food smooth like a paste when I was very young. Bits felt very wrong in my mouth and hard to swallow. Now however I love texture in my food and adore seedy bread.

Most AS kids genuinely have a really hard time with games.’ I hated PE in school, sometimes for me it was like a form of torture. I had one teacher who accused me of being lazy, but it was not that at all. It was the fact I would have to change, and then change back again, which with my OCD was one of the hardest tasks they could set me to do by myself as a child. The whole changing into a PE kit thing seemed pointless to me anyway as I could barely catch the ball, let alone do much with it, so I never broke into a sweat. I was unable to keep up with team sports and my coordination for catching and throwing is woeful. It was not helped by the fact that I had no friends whatsoever in my first secondary school and whoever ended up with me on their team resented me for it.

It is very unfair of the media to portray us all as people who talk continually about train timetables or constantly talk about dates or facts, or computers. We are called freaks and nerds enough anyway.’ ‘Despite the film Rain Man, we don’t all have these amazing mathematical skills- I wish!’ ‘Savant autistic is very rare- I seem to have got the nerdiness and freakishness, but none of the genius. These programs seem to make Joe Public think we should all have some seemingly supernatural ability and that is not at all helpful.’ I have in fact got terrible maths skills; one teacher even suggested I might have a maths learning disability. I am now able to use enough maths to be able to function in everyday life, but as for fractions and algebra I never understood them. I find train timetables very useful for catching trains, but dull as ditch water to discuss at any length. I can be very nerdy at times, but I really do lack the genius part, I actually had to work very hard to get to the degree I now have and was never a child prodigy at anything.

I just don’t want to run with the pack. I don’t see the point in pretending to like things when I don’t.’ I never seemed to like the same things at school as everyone else and I most definitely did not fit in with the social life my friends had at college. I could never understand why they wanted to go out drinking heavily and end up in some nightclub listening to awful music. I never saw the point in pretending to like things just so people would be my friend as they would not have been true friends anyway. I was bullied for being different in school and was actually quite depressed for some of my teenage years, but I never saw why I should have to fit in just to please them.  Both at university and now I have made real friends who actually have some of the same interests as me and we enjoy spending time together.

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