Archive | October 2018

OCD 1, Me 0

This post is about my OCD and some random things that came to me about it.  I have been writing down thoughts I have had about it for the last few months.  This started after I wrote the following as a status on Facebook.

I will not brush my hair

I will not brush my hair

I will not brush, oh dam

OCD 1

Me 0

This got me thinking about my OCD and how it affects me.  It sometimes feels like the OCD and me are fighting and I often loose, although I have a small victory every so often, which helps me to feel somewhat better.

Obsessive Compulsive Disorder is not just about being a neat freak and really well organised, although in some cases that can be part of it, but to a degree that is less helpful than it sounds.  In my case it is my own mind nagging me, sometimes almost all day.  Stress and anxiety can make my OCD flare up worse.  At times I get cross and frustrated with myself due to the OCD, making me even more stressed and the OCD even worse.

I have wasted hours of my life redoing things that were perfectly OK already.  Sometimes things just do not feel ‘right’ despite being told they are fine and even being  able to see for myself they are fine, they can still feel wrong.  At times I redo something over and over to the point it is like I am stuck in a loop and have to force myself out of it.

One way I have found that can help me to not get stuck in a loop in the first place is singing, although this only works with certain OCD rituals and not on a really stressed out bad day.  I sing to myself to distract me from the OCD thoughts or to make me feel less stressed.  It can help me to get through a task such as dressing or getting ready to go out.  Some people assume I am singing because I am really happy, which is often not the case.  Sure I do sing to myself when happy sometimes and when a song is stuck in my head, but I often use singing to block out the nagging in my own mind.

One of my worst rituals is my bed time routine.  On a bad day it can make bed time seem kind of scary for me, as I know it will take me far too long that day to get to sleep.  If I only have to do my rituals once before bed I call that a win.  However once asleep I generally do not have trouble staying asleep and sleep very well.

When I am in the middle of certain rituals and someone interrupts me it can mean I have to start again from scratch depending on the exact nature of the interruption and the stage I am at with the routine.  This can get very tedious if I am interrupted a lot.

I once saw a documentary on TV about OCD, one sufferer sick of people telling him to ‘just stop’ when it came to his rituals said it is like telling someone with a broken leg to just walk it off.  This is a very good analogy, if it was that simple to just stop, why would we still be doing it?  I do not want to be brushing my hair over and over to get it neat, to the point it gets greasy quicker than it should or checking the front door is locked three times before going to bed, but some days my compulsions are just too strong.

People who say to me ‘I can be a bit OCD at times to’ can get rather annoying when they are referring to the fact they like routine or are just a tidy person.  Most people have ways of doing certain things they prefer, but when I spent all morning getting dressed and ready to go out because I had to do certain things over and over again then it can sound a bit like a kick in the teeth.

OCD is a diagnosable clinical condition that can come with therapy and in some cases medication. However some people seem to think of OCD as a term for just being fussy or pedantic and make jokes to that effect.  OCD memes on social media also often make light of the condition and can help spread misconceptions about it.  For example ‘I have COD, it’s like OCD but the letters are in alphabetical order, as they should be’, which just totally misunderstands what OCD even is.

Then there are those who think that I can just go and get therapy for my OCD and it will go away.  Mental health therapy is not always that simple, and OCD therapy, at least on the NHS is very rigid and in my case hardly made a difference long term.  The only thing they seem to offer for OCD is Cognitive Behavioural Therapy, which is supposed to help reduce ritualistic behaviour by helping you to confront your obsessions and resist the urge to carry out compulsions, learning instead to tolerate the anxiety till it is no longer such a dominant voice in your mind.  However I was only allowed twelve sessions of CBT in total, and they kept trying to make them over the phone or online and not in person.  Also I have since been told that CBT for autistic people is often pretty ineffective, but the NHS seem to not like to treat both at the same time even though they are co-dependent conditions in my case, I guess funding works one name condition at a time even if you have conditions that can be hard to separate from each other and tell which is which at times.

All the nagging in my mind, the rituals and redoing things over and over can be mentally draining at times.  By the end of some days I feel very tired from having had my own brain have a go at me all day, however going to bed will then be a whole other set of rituals that will mean I sometimes take ages to finally get into bed.  Meaning that I am often still tired the next day and some days never seem to feel fully awake.  This is one of several reasons I do not feel able to work a full time job and come off benefits right now.

OCD is often a lonely and confusing condition when other people do not understand what you are going through, even when they try to understand, people often seem to not really get what it is like to live with.  I now use mental health chat rooms and sometimes find other people who have OCD which can be interesting and helpful, making it slightly less isolating for me.  I wish that I could have had places like this when younger.

I count myself somewhat lucky in that I do not have the extreme version of OCD where people think loved ones will die or get hurt if they do not do their rituals correctly and can have nasty visions of things happening to people they care about.  I gather this type of OCD is much rarer and often occurs in people who also paranoid.  However this does not mean my type of OCD is easy to live with and it is still a real condition with real problems attached to it.

Image result for ocd memes

 

 

 

 

 

 

 

 

Perthes Disease Frequently Asked Questions

These are some of the questions I get asked most on my Facebook page Adults with Perthes Disease and have come across on other Perthes related pages and groups.  I am answering them as best I can from the research I have done on Perthes over the years and on my experiences of having had it myself.  However I am not a medically trained expert in anyway and advise you listen to your doctor and medical team first and foremost.

Is pain down the leg normal?

Referred pain down the leg is common often to the knee or even feet. As a child I sometimes got shooting pains down the leg from my hip.  As an adult I get a dull ache down the leg possibly due to my bad walking style.  My feet turn out too much as did my knee before I had my hip replacement.  I have found orthotics (insoles inside my shoes) from podiatry helpful.  Mine have a slight slope on the heal to help turn my feet forward a little.

The non Perthes affected hip and leg sometimes hurt, should I be worried?

No, this is fairly common.  The good hip often has to compensate for the Perthes side by taking more of the body weight meaning the muscles sometimes become rather sore.  Perthes can affect both hips, known as bilateral Perthes, but this is quite rare, occurring in only about twelve percent of cases.  If the pain in the non Perthes hip occurs frequently and becomes really bad it is worth mentioning it to the doctor just in case to get it checked out.

How much should my child be non-weight bearing on the Perthes hip?

This is something you must listen to your doctor and physiotherapist about.  It depends on what stage the hip is at during the Perthes and re-growth.  Whilst non-weight bearing swimming is usually advised by physiotherapy as a good way to keep the muscles from getting too weak, so that when full walking does resume the muscles are not too sore.

What pain medication seems to be the most affective?

I will never advise specific drugs and you should never take drug advise online for safety reasons.  Without knowing a persons medical history it is not a good idea to suggest medications. People can have allergies to certain medications or find that the side effects outweigh the benefits for them.  What works for one person may not for another.  If you wish to try pain medication, talk to your doctor who can prescribe something for you.  A good doctor should keep an eye on you with regular check-ups when on any new strong pain medication.  There is a place for pain medication if used sensibly and they help a lot of people.

Any ideas on non-medication pain relief?

I found a microwave wheat bag very helpful on my hip.  When sitting or lying down it kept the hip warm and unlike a hot water bottle it bends around the joint.  When moving about a stick on heat pad can help, but must be stuck over the underwear and not directly onto the skin or it can burn.  A TENS machine uses mild electrical impulses to help with pain.  I found one somewhat helpful, but it took some getting used to the electric pulses.  A warm bath is great for any muscle or joint pain, especially with Epsom bath salts.

Is a chiropractor a good idea? 

A chiropractor uses their hands to help relive problems with bones, muscles and joints.  According to the NHS website they are considered an alternative and complementary therapy.  They are not widely available on the NHS and private treatment can cost anywhere between £30- £80 a session.  A chiropractor should by law be licensed, but is not medically trained as a doctor.  I have never been to a chiropractor myself and can’t say they are good or bad for you, but I would suggest trying a physiotherapist first as they are recommended by doctors far more often.

Would a memory foam mattress help?

I think a memory foam mattress might help a tiny bit, but not a great deal.  An orthopedic mattress is very expensive and night time pain can be helped in other ways, such as a microwave wheat bag or a cushion or pillow under the hip.  If a new mattress is needed anyway it might be worth asking your doctor what they suggest, but I would not rush out and spend a lot of money on one without some research first.

Is bed wetting Perthes related?

Not directly.  Many children wet the bed and it varies as to when they start and stop doing it.  It could be that the hip pain is causing anxiety which is in turn causing bed wetting.  Also getting up in a hurry for the toilet when in pain can be tricky.

Does Perthes lower the immune system?

No, some children get more ill than others with or without Perthes.  There is so far no link to Perthes and the immune system.

Is Perthes Hereditary?

Research on the causes of Perthes is being done.  In the UK an ongoing study suggests there maybe a hereditary link in a small number of cases, but not in most.  There does not seem to be a high chance of passing it on to children if you had it yourself, but I gather there is more research results to be published on this fairly soon.

As an adult I am experiencing back pain, is this related to having had Perthes as a child?

It could be, limping for years, long term use of crutches or a walking stick and walking with a bad gait can affect the posture.  I have had back, neck and shoulder pain on and off all of my adult life.  I have found simple exercises from physiotherapy help me a lot if I keep them up regularly.  A shoe raise in childhood can help to prevent limping all the time.

How can I get a buggy or wheelchair for walking longer distances or bad days?

Physiotherapy can provide wheelchairs, but are often reluctant for children as they think it will cause the child to become overly reliant on it and not walk as much as they should, but I found a wheelchair very helpful on my worst pain days and for days out with more walking involved.  You can contact your local Red Cross centre who often have wheelchairs and buggies to loan out on short or longer term basis.  The Perthes Association in the UK have good advice on where to get hold of any equipment you may need.  There are various local charities that help disabled children to get equipment; an internet search can often provide a link.  Some larger tourist attractions also have wheelchairs you can loan for the day, often worth asking at the ticket office or checking online before you go.

 

For more information on Perthes Disease the Perthes Association are very helpful and can answer a lot of questions you may have.    https://www.perthes.org.uk/

Another site you may find helpful, especially if you are in America is Perthes Kids Foundation http://www.pertheskids.org/