2021 That Was The Year That Was

Having reached the end of 2021, I decided to review my year. It felt like I had not done or achieved much, but I knew I had not done nothing all year. So what did happen for me in the last year?

I think the biggest thing for me in the last year was changing my medication after twenty-three years on the same pills. My mental health had been gradually getting worse again and in the end I saw my doctor about it. We both agreed my medication was clearly not helping me, so time to try something else. Sticking with the SSRI group made sense as they are one of the most helpful for depression and anxiety and it is easier to switch medication within the same group, especially after so long on the same ones. My doctor came up with a plan to reduce my old medication very gradually and then switch to my new pills. My doctor warned me things could get worse before they got better and she was right. For a few weeks when I started the new medication I felt quite low, anxious and got a tension headache off and on. We gradually upped the dose of the medication and it seemed to help. They have by no means era the depression and anxiety, but I do feel like I am less tense and am able to function somewhat better even on bad days mentally. After so long on my previous medication I was slightly anxious to change it, but my doctor has been having regular check-ups with me and I feel safe with her keeping an eye on me. Previous doctors have just left me on my old medication pretty much unchecked even when I brought up similar issues, so it is such a relief to finally have a doctor that listens to me and wants to try to help me. I feel a sort of sense of achievement that I was able to stick with it and reach this point with my medication.

The other main medical issue for me last year was having dental surgery. I had a wisdom tooth removed. It is a minor surgery, but being my first ever dental surgery it was a somewhat of a big deal to me. I had to have it done at the hospital as it was impacted on bone and needed some extra work to get it out. What made me nervous was that I had to be awake for it, but it was so well numbed and so quick that the surgery itself was fine. However the after effects once the numbing wore off were horrible. It was an extremely painful few days. I got dry socket, so the hole failed to clot properly and it became infected. I was put on antibiotics which never fail to make me feel sick and give me stomach issues no matter which kind I am given. The gum was inflamed for the best part of a week and it hurt the entire time. It was only about a week, but it has actually left me quite scared of ever needing another tooth extraction again.

Other medical issues last year included my chronic posture pain issues, which have improved a fair amount since I started doing daily physiotherapy for it and got generally fitter. However they still flare up fairly frequently to varying degrees, especially my lower back and hip muscle pain. Raynauards still continues to be a problem in cold weather and was especially bad for the first couple of months last year.

In August my hip replacement reached its ten year anniversary. So far the joint has been problem free and I am very glad I had it done. I have issues with the muscles around the joint being weak and sore at times, but the joint itself is fine. I am enjoying being able to walk further and stand for longer without worrying it will flare up what could sometimes be extremely painful arthritis. I was told the joint should give me fifth-teen years minimum, more likely twenty and some last even longer. Since I do not do any high risk activities like contact sport or go running regularly I hope it will give me a good few years yet.

One of the major factors of last year was of course Covid, which affected everyone. The main issue for me has been cancelled events and lockdowns. I understand the restrictions, but they are hard when you live alone. However unlike the first lockdown the last one allowed single person households to have one other household they could visit which helped me a lot as I could see my parents regularly. I am being careful to stay safe, wearing a mask a lot of the time in indoor public places, even during the period when masks were no longer mandatory in shops I still wore one. For the first few months of last year I was somewhat anxious as I had not yet been vaccinated. Being under forty and not considered particularly vulnerable I was one of the last people I knew to be vaccinated. However I managed to get my booster shot much quicker having had it done just before Christmas. So that is three vaccinations in one year, luckily I live very near my local vaccination centre.

Something that has helped give me purpose and keep going has been my volunteering. Even during lockdown I was still able to keep helping a local charity with their social media, adding something most days to their page and sharing support information to relevant groups. Then once non essential shops could reopen I returned to my weekly community craft shop sessions. Last year the shop got a new manager who made some slight changes which gave me something else to focus on in my year.

I am part of the local history group which kept going last year despite lockdowns and restrictions. Not only am I a member, I am also part of the committee. We had a series of talks online attended by a small but enthusiastic group of members. Plus a few committee meetings held online. It was good to keep this going as it gave me something else to focus on during some of the more boring parts of the year.

The most annoying part of my year was the number of things that needed repairing in my flat. Several things broke last autumn within weeks of each other. My television signal went and it took three different repair companies to fix it properly! It cost me a fair amount in the end, but worth it as I watch a lot of television. My shower curtain rail fell down twice and had to be reinforced. My bathroom ceiling needed re-plastering and painting, but being slightly asbestos my housing company had to send a specialist to sort it out. Then to top it all my washing machine broke down and needed replacing. The bathroom things were sorted for free by the housing company at least, but I had to organise my own repairs for the others. I have never had to do this before and I was somewhat nervous. I had to figure out who to call and then had to make phone calls that were not routine which I often find worrying. However I managed it and managed to keep doing it when the first two television people let me down. I am actually rather pleased with myself and it has given me more confidence should I need to do similar in the future.

So although no major changes for me last year, it had some good points and some less good points. I have at least made some progress in regards my mental health and medication. Have become slightly better at dealing with things when they go wrong and learnt as long as I have radio I can cope without television at least for a while.

Pain Relief

​I run a Facebook page for adults who had Perthes Disease, a childhood hip disorder that affects the growth of one or both of the hips.  Many experience painful after effects of having an undersized, deformed and weak hip.  One of the most frequently asked questions to my page is about how to manage the pain, not only hip pain, but often other pains that have arisen from years of walking and standing incorrectly.  A limp can lead to posture issues often resulting in pain in the lower back, neck and shoulders.  The tension in my shoulders eventually got so bad it travelled down my arms causing tennis elbow.  Some experience knee pain from walking crocked and even ankle joints can be affected for some.  

Over the years I have tried many different things to help with my pain.  These are some ideas and thoughts on the things I have come across for pain.  What kind of pain relief helps often depends on the type of pain and where it is on the body.  Muscle pain can be different to treat to nerve pain, and pain actually in the joints can be different again.  It can take time to find what works for an individual and can be a matter of trying different things till you find what works for you.  Not everyone responds the same to pain relief and some should be used carefully especially for the first time.  Most of these things are total cures, but can help reduce pain.  Most of my ideas are of course based on hip and chronic joint pain, but some can be effective for other kinds of pain as well.  

Pain Killer Medications

Over the counter medication is enough for many people.  There are several kinds available.  Classic ones include paracetamol, which I find helpful for headaches, general aches and fever.  Ibuprofen is good for inflammation in the joints such as with arthritis and I have found it very helpful over the years.  It must not be taken on an empty stomach though as it can over frequent use lead to stomach ulcers and eventually damage the lining of the stomach, but taken with food or a fatty drink such as milk it is fine.  Co-codamol is a mix of codeine and paracetamol.  You can only get a lower dose over the counter and you can not get pure codeine without a prescription. It is a strong drug and I only use it when regular paracetamol is not enough for the pain. I find it makes me drowsy so mostly only take it at night to help me sleep when I have a pain flare up.  It is very handy when in a lot of pain, but shouldnt be used too often as codeine can be addictive with prolonged use.  Some people still use aspirin for pain, but it is not recommended so much now by doctors or pharmacists since other more effective pain medications have become available.

Often for those with chronic pain issues over the counter medications are not enough and a prescription medication might be helpful.  You should always see your doctor and take only what they prescribe for you, never take pain killers prescribed for someone else.  Amitriptyline and gabapentin are used specifically to help with nerve pain such as sciatica and multiple sclerosis.  Pure codeine or stronger dose Co-codamol is often prescribed, but usually only short term. The strongest pain killers a doctor may prescribe are morphine based or morphine like (such as fentanyl and oxycodone).  They are sometimes only prescribed after seeing a specialist pain doctor as they have some serious side effects long term as they are so strong.    

Topical Medications

Topical medications are absorbed through the skin often in the form of a gel, cream or occasionally a spray.  They can be helpful for joint pain, such as arthritis and for muscular pain.  Some work with heat, usually a cream and some work with cold, usually known as freeze gel.  Some contain ibuprofen and can be useful for a quicker pain relief than tablets directly on the area that hurts.  However I found topical ibuprofen was not effective for as long as tablets.  I have found some topical medications useful as a short term gap between tablets when they have worn off, but you are not yet supposed to take another dose.  There are some prescription only ones often used as patches for things like morphine, but I have never been prescribed any myself.

Cortisone Injections/ Steroid injections

I have never had these because my surgeon did not think they would benefit me much.  They work as an anti-inflammatory on a specific area of the body.  They are most commonly used for joint pain, arthritis and sciatica.  I have come across many people in hip replacement groups online who have had them.  The results seem very varied and can come with side effects.  Some people experience several months of pain relief from them, some just a few weeks and some hardly anything at all.  You can only have up to three a year in the same area and some people report that they become less effective with each use.  There are recent studies to suggest that they may actually increase the onset of arthritis if you have them more than once.  They sound worth trying for some people, but you should be aware of the side effects and that they are not a permanent solution to pain.        

Heat 

Heat can be helpful with sore muscles, helping them to relax and relive tension.  There are various ways to apply heat.  There is the classic hot-water bottle, but I found a microwave wheat bag wraps around the joints better and often has lavender oil infused with it so it smells nice when heated up.  I find it most useful at night.  Stick on heat patches last between two to four hours and are very handy during the day when you have to move about.  When first applied they can get really hot and must not be applied directly to the skin.  There is no need to buy expensive brand name patches; I found the cheap store brand ones just as effective.  A warm bath can also be good to relax both muscles and mind.

Cold

Whilst heat is good for muscles, cold can help against pain caused by swelling.  After my hip surgery I used an ice gel pack that you put in the freezer.  Ice was recommended by the nurse, but gel packs dont leave a pool of water behind. 

TENS Machine 

A TENS machine works by passing electrical signals into the body.  Firstly this blocks the bodys pain signals that are normally transmitted through the nerve fibres to the brain.  Secondly it stimulates the bodys production of endorphins, which are our own bodys painkillers.  Sticky pads are attached to the area of pain and electric signals are sent from a portable battery operated device.  It uses very low levels of electrical signals that can be controlled at different strengths and types of signal from tapping to vibration.  I find it most effective for back pain, stiff shoulders and sore muscles.  It does take some getting used to and some people do not enjoy the feeling.  They vary a lot in price, but I found a fairly cheap one from my local pharmacy is effective.

Physiotherapy

For a lot of chronic pain issues physiotherapy can be very effective.  I have used it to help with both my hip muscle pain and my posture pains.  It has helped me become more flexible, stronger, gain better balance and improved my stance.  It can take quite a long time for it to have a noticeable effect on pain, being a gradual process of getting fitter.  Most people do not need ongoing appointments with a physiotherapist; three or four is often enough.  Then it is up to you to do the exercises at home most days.  Occasionally there is a need for more intensive physiotherapy often in a hospital gym setting, but this is usually after some kind of surgery.  Some physiotherapy exercises are designed for long term use, such as my posture exercises, because when I stop doing them for a few days my pain becomes worse again.  I have been doing some of my leg and hip exercises for years.  However some physiotherapy is temporary whilst getting over an injury or sickness.  My tennis elbow exercises were daily at first, but now I only have to do them as and when I feel the pain returning.  Some people struggle with physiotherapy as at first it can be quite painful to exercise when not having done so in a long time, but it can be worth persevering with. 

Hydrotherapy  

Hydrotherapy uses water based exercise led by a physiotherapist.  The water supports your weight making exercising the joint easier.  It can be excellent for those struggling after joint replacement surgery to get fit again or for arthritis.  However it can be hard to get as not every hospital has a hydro pool and it can be expensive to pay for privately.  Often a few sessions will suffice to learn the exercises and then you can do them for yourself at a regular swimming pool.    

General Exercise 

Whilst physiotherapy can be helpful with specific issues, more general exercise and fitness can help reduce some kinds of pain.  I found physiotherapy good for getting me to a level I can now work on my fitness in other ways.  Just walking more has helped me become less stiff.  Finding a form of exercise you enjoy is good for both physical and mental health.  I have always enjoyed swimming as a good way to stretch my sore joints.

Rest

With that said, knowing your limits is also important.  Not over doing it and taking a break can also help when you feel pain coming on.  Sometimes just a short rest can help to relax the muscles and relieve tension.  Occasionally a longer rest maybe required to give the body time to heal such as after surgery or illness.  I have found trying to push past my pain and keep going is not a good idea as it can lead to worse pain the next day.  

Pain Clinic 

If regular pain medication and other things are not helping you enough with you pain, your doctor may refer you to a pain clinic.  They are usually run by a team of doctors and physiotherapists.  The clinic programmes vary depending on your needs and what they have on offer.  I saw a pain specialist doctor and a physiotherapist.  They offer talks about understanding pain, which can help you to understand how to treat yourself for your pain, mentally as well as physically.  They offer a series of classes in various things including tai chi, yoga, hydrotherapy and circuit training.  They do not claim to totally eliminate your pain, but reduce it and help you cope better with it.  

Tai Chi  

I took the course in tai chi led by the pain clinic physiotherapists.  Tai chi uses a series of movements combined with relaxation and deep breathing techniques.  I found it helpful for my balance and flexibility.  It also helps me to feel somewhat relaxed and less stressed which is turn helps my pain, especially in my shoulders which are often tense.  It takes a while to get the hang of it and learn the movements, but with a good instructor it can be worth while.

Yoga

There are several types of yoga, some more focused on the mental side and some more on the movements.  Like tai chi it uses a combination of exercise and relaxation to help with flexibility, balance and mental wellbeing.  It is important to find the right yoga instructor because some seem to over do the exercise part to the point that it could make things worse for a chronic pain sufferer.  I have not done a whole course in yoga, but have learnt some of the basic moves using Wii Fit.  Over time a lot of the moves have become easier and I have defiantly found them beneficial for my fitness and pain issues.

Acupuncture

There are many kinds of alternative treatments, but I have chosen to write about acupuncture as it is one of the most commonly used and one of the few I have actually tried.  It uses very fine needles inserted into specific points in the body relating to where your pain is.  The needles are believed to stimulate activity in areas of pain resulting in the release of endorphins and scientists think it may also promote the release of steroids.  I tried it when I had a frozen shoulder and thought there was an element of truth behind it, but it was only mildly helpful.  It may have been the relaxed atmosphere and sense of calm that helped me more than the actual needles I am not sure.  However the effect it had wore off after only a few hours and I feel that it was not effective enough for the price they wanted to charge me after my first two trail sessions.

Massage 

A massage can be very helpful for pain the shoulders, neck and back.  If done well the effects can last several hours.  A huge part of it is how relaxed it makes you feel, helping to relieve tense muscles.  It can be done by a partner or close friend, but needs to be done carefully so as to avoid making pain worse.  A professional masseur should have some idea about common areas of muscle and joint pain and know how to work them safely to get the best results.

Surgery

Surgery is usually a last resort, but sometimes necessary.  It can help with a lot of types of pain, but is never an easy solution.  There is always a risk with any surgery and recovery can take time and effort.  My hip replacement surgery for example was a lot of work to recover from and mentally as well as physically exhausting, but worth while long term.  Some surgeries may only reduce pain, not totally eliminate it and some types of pain may not benefit from surgery at all.  It is definitely an option worth exploring if in a lot of pain for a long time.  However surgeons often expect non-surgical options to have been tried first. 

Cannabis/ CBD

As popular as a form of pain relief and now legal in more places I feel I should give a mention to cannabis.  However I live in the UK where it is still mostly illegal and have never tried it myself.  There is a growing body of scientific evidence that it is an effective pain killer, but the strain and dose should be carefully chosen so as to not experience so many side effects.  If legal here I would definitely try it, but I would be careful to use a knowledgeable source who could advise me on using it for pain.  In the UK CBD is legal, which is an extract of cannabis without the illegal part called THC.  Some people say they get benefits from CBD, but the scientific evidence for it is limited.  Some studies suggest it can have a very mild effect on pain and of course there is the placebo effect as well.  You can get it in several forms including drops, vape oil, edibles and as patches.  It should be noted that CBD products come in various strengths and some in fact contain only a very small amount of it.  To get a decent strength dose it can be quite expensive. 

If you experience intense pain frequently you should see your doctor.  They maybe able to help diagnose your source of pain which can help in finding the right treatments.  Pain can be referred pain from elsewhere in the body and have a cause you might not suspect, such as my wrist and arm pain being tennis elbow caused by my shoulder problems.  A doctor may have more ideas to try relating to your specific issues.  

Recommended reading- The Pain Relief Handbook by Dr Chris Wells and Graham Nown.  Although published in 1993 so possibly a little out of date in some areas since a lot more research has been done on pain since then, it still has a lot of worthwhile information.  Dr Wells helped establish the first pain management programme in the UK, which became the model for future pain clinics in the NHS.  

  
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My messed up body and mind

​Employment Support Allowance (ESA) is a government benefit paid out to those who have a disability or health condition that affects how much you can work (www.gov.uk).  I have been in receipt of this benefit for a number of years now.  Previously I was on Job Seekers Allowance, but after a breakdown and my mental health issues getting worse again, I asked my doctor to sign me off as sick as I realised that holding down a paying job at that time was unrealistic.

Sometimes people question why I do not have paying work.  People do not see me on my worst days when I stay at home too ill to go out.  Yes I have worked hard on both my physical and mental health to get fitter and stronger, but I am still in a place I feel I would be too unreliable to keep a job. I have recently had a more intense period of health issues which give a good example of why I am still on ESA.  

I do not think I have one health condition that by itself would prevent me from working because none of them individually are deemed that bad medically.  However when you combine all of my conditions that is when I become more disabled by them.  One of my conditions can flare up and then trigger another and sometimes another.  My body sometimes only needs one thing to go wrong to throw it off balance. 

This is my recent health issues within the last year.  I am not sharing this for sympathy, but to show what it is really like to live with a range of health issues and why some seemingly fit for work really have more going on than you may realise.  

Firstly there is my depression.  It comes in phases; I can go for months or even a year or two without it being a real problem.  Then it can flare up again, usually brought on by a lot of stress going on in my life or something going wrong, over time it can build up and can take months to die down again.  I have currently had issues going on with my depression for the best part of a year to varying degrees.  It reached a point I went to see my doctor about it.

My doctor and I have decided to change my medication.  Sounds simple enough, but before I can take new medication I have to get off my old medication.  I have been on my old medication for about seventeen years and they are one of the hardest SSRI to come off, especially after so long.  So I am very gradually reducing the dose I am taking with strict instructions on how to do this from my doctor.  I think this has effected my sleep, which I already had issues for most of my adult life, but now it has become even more of a problem.  I can struggle to fall asleep for well over an hour and sometimes wake up several times in the night.  I also do not think I am sleeping as deeply.  As with many autistic people and those with OCD I already feel I have chronic fatigue as it is, so this is definitely a problem.

Then last January I started to experience some wisdom tooth issues, and it turned out to be an impacted tooth, meaning it was growing crocked and hitting bone.  After several months of dental appoints, antibiotics to reduce the swelling and waiting for a referral I had my tooth removed at the hospital.  Having a sore gum all this time probably was not helping my already low mood.

Removing the wisdom tooth itself was pretty straight forward, but afterwards was when it really became an issue.  I ended up with dry socket, which is when a blood clot fails to form or gets dislodged from the gum where the tooth was removed.  Dry socket in itself is quite painful, but it also can lead to an infection getting in, which is exactly what happened to me.  So I had my gum repacked and was given antibiotics. Antibiotics almost never fail to make me feel at least a little bit sick and they gave me two kinds of antibiotics, so I knew that was not going to make me feel great.

The day after starting the antibiotics I had my second Covid vaccination.  Two days later and I felt dreadful.  So I had a gum infection, antibiotics, vaccine reaction and had a rather low mood before that, then the final straw I started my period!  So anyone would be feeling not so great by this point.  However I do not think I react like a lot of people do when I am ill.

For one thing when I feel really sick I often end up in a state of panic.  I actually have a slight fear feeling sick as I know I do not cope well with it.  I tend to sleep for an awful lot of the time when ill and hide away.  I do not function well when ill and dealing with other people can just cause me a meltdown.   I have always had a low pain threshold as well.  

I know autism plays a role in how rubbish I am at being ill.  The fact I get anxious and panic, loose some ability to control my emotions and get really upset at times.  My really low pain threshold is also quite common amongst autistic people.  Some in fact feel very little pain, to a dangerous degree in some cases, but a lot of us are over sensitive to pain.   

I know that I would not have coped with going to any kind of paying job in the last few weeks.  I also think I would have struggled to cope on quite a number of days in the last year to work to the point I could have easily lost a job.  I do volunteer work and try my best to be reliable, but it helps to know I can cancel at fairly short notice if I really need to.  With fatigue, chronic pain that can flare up almost without warning sometimes and mental health that is often very sensitive, I feel I would not be of much use to an employer or able to earn enough self-employed, at least at present.  

Many others on disability benefits like ESA will have their own stories as to why they currently do not work.  An awful lot of them will also have a combination of reasons like me and not just one thing.  

My pain Story- Part Two

I said I would be coming back to this topic and so here we are.  I last wrote about this in October so that is where I will pick things up from.

I got a referral to the Social Prescriber at my GP surgery.  This is a role I had not heard of before.  According to the NHS website a social prescriber looks at non-clinical ways to help with chorionic conditions.  So I thought I might get some advice on fitness classes or free swimming sessions or something along those lines as the online description seemed to suggest.  However, although she was a nice enough person, my local social prescriber left me thinking of the phrase ‘as useful as a chocolate teapot’.  She had no medical training at all and was basically there to suggest ways to distract me from my pain and to get out more.  She asked me about my hobbies and as soon as craft came up she suggested I join a local craft workshop.  Had I heard of this local arts and craft place?  Seeing as I had already told her I volunteer in a craft shop and show an active interest in craft, funnily enough I had come across it before.  Some of her suggestions, whilst I can see they were not all totally stupid ideas, did not take account for my limited budget, which she had already asked about.  When she resorted to looking up things online to get ideas, I knew the session was not going to benefit me.  It is also not going to benefit many others if there is no help with the costs, most of these suggestions were not free and certainly not free to travel to.  I hope most social prescribers are more useful, otherwise what a waste of an NHS budget when it is already struggling finically. 

I made a follow up physiotherapy appointment as I was supposed to do.  This time the appointment came a lot quicker than before.  I managed to see the same physiotherapist as last time which helped.  I felt able to say my wrist and hand exercises are helping a tiny bit, but not a vast improvement.  I was told to keep up the exercises till the pain has totally gone, which it still hasn’t.  I mentioned that I now have almost constant shoulder pain, but still no help with that despite making it clear that it was probably the worst part of my pain issues at the time.  He did feel annoyed on my behalf that my pain clinic appointment had still not come and said he would contact them for me.

I managed to get another GP appointment, this time with only a two-day wait, much better than last time which was nearly a month.  I saw a different doctor this time and was given a new painkiller to try along with the codeine, Amitriptyline.  Often used as an antidepressant it also is used for neuropathic pain and tension headaches.  The idea was to take them mainly at night to help me sleep, since the pain is making getting to sleep harder.  However after taking the entire packet for about a month decided not to order any more as they seemed to prove ineffective.    

I finally found my TENS machine again, which I used to use before my hip replacement.  It sometimes helps to slightly relax my neck and shoulders.  It is most helpful at night right before bed so I can lie down more comfortably.  Its affects do not last that long and it does not totally get rid of the pain, but it does help to relax my muscles somewhat.   Another slightly helpful thing I have found is muscle rub gel.  A gel you rub in to the sore muscles.  Again the relief is only temporary and only mildly helpful, but better than nothing.

Then I noticed a new issue, pain in my toes, they seemed to get overly cold, red and very sensitive.  The pressure of walking sometimes hurt my toes.  One night my left toes got super cold and tingly and then hurt a lot, two toes went purple.  Despite socks and being under the bed covers it took nearly an hour to fall asleep due to the pain.  I mentioned this to the doctor who suggested it could be Raynaud’s Syndrome. 

According to SRUK, a charity that supports those with Raynaud’s, ‘Raynaud’s is where the small blood vessels in the extremities such as hands and feet, fingers or toes are over-sensitive to even the slightest changes in temperature, the cold and sometimes stress’, (www.sruk.co.uk/raynauds/what-raynauds/) 

A couple of weeks later my fingers started to also get painful and sensitive in cold weather.  My fingers sometimes go totally white and become more difficult to use.  Sometimes a flare up can last a good twenty minutes or so in my fingers.  My toes got worse becoming so sensitive that even the slightest knock to them can hurt way more than it should.  The tips of my toes have pealing skin and some have developed a hard white crust on them at times. 

I then had another doctor’s appointment, this time with my own GP.  This time she actually looked at my fingers and toes.  She put pressure on them and noticed they stayed white after for longer than normal.  She confirmed I do have Raynaud’s Syndrome.  She said that although not initially caused by it, Raynaud’s can be made significantly worse by joint issues such as the ones I have.  She also took me off a medication I was on for anxiety as it can also make Raynaud’s worse.  Whilst the anxiety pills were not amazingly helpful, they were somewhat useful, so that is a bit annoying. 

The main cause of a Raynuard’s flare up is cold weather, but stress, emotional changes and hormones can also be a factor. So being the middle of winter my fingers and toes have hurt rather a lot recently, in fact my toes have hurt almost non-stop for nearly a week now, although the severity to which they hurt can be less at times. So I am trying to keep my fingers and toes warm and avoid being outside in the cold for very long.

Raynauard’s in the fingers

Finally the pain clinic has sent me an appointment.  It is at the end of January, so that took five months from making the initial referral!   I suspect the only reason I even got this appointment was both my GP and physiotherapist contacting them again on my behalf.

Again I will be coming back to this topic when I have an update on how things are progressing with my pain issues.  This has been a slow process so far and certainly not yet done trying to figure out what exactly is going on with my body.

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.

My experiences of therapy

I have tried various kinds of therapy for my mental health over many years, some though the NHS and some I have found for myself.  These are my experiences of the therapies I have tried.

Cogitative Behavioural Therapy (CBT)

‘CBT is based on the concept that your thoughts, feelings, physical sensations and actions are interconnected, and that negative thoughts and feelings can trap you in a vicious cycle’, (www.nhs.uk/conditions/cognitive-behavioural-therapy-cbt/). 

It aims to break down problems into smaller more manageable parts.  You are shown how to change negative patterns to improve the way you feel.  Unlike other talking therapies it focuses on current problems rather than issues from your past.  It is most commonly used to treat anxiety and depression; hence I have had it for my OCD, which is a type of anxiety disorder.  

However it was not that well explained to me when I had it and seemed based on the idea that I could just stop and walk away from my OCD rituals, which if I could do that I would not be needing therapy in the first place.  The NHS website says each session should last thirty to sixty minuets, but after my initial session most of them did not last that long.  I was encouraged to take a lot of my therapy sessions by phone, which seemed to not be a very effective form of therapy for me. 

CBT does not address winder problems such as other mental health issues that could be impacting on your anxiety or depression.  I have since found out that CBT is often ineffective for people with autism, such as me, as it does not address the autistic side of things.  All CBT seemed to do for me was to get rid of one OCD ritual for it to be replaced with another.  I can see how this might help if you have a dangerous ritual, but otherwise seems a bit unhelpful.  I can see CBT might work for some who have not got more complex issues, but it was not for me.  However this seems to be the only therapy a lot of people can ever access on the NHS as if it is a panacea that will cure all mental health issues. 

Mindfulness

Mindfulness is a type of meditation that focuses on being present in the moment without judging anything. ‘A typical meditation consists of focusing your full attention on your breath as it flows in and out of your body. Focusing on each breath in this way allows you to observe your thoughts as they arise in your mind and, little by little, to let go of struggling with them. You come to realise that thoughts come and go of their own accord; that you are not your thoughts. You can watch as they appear in your mind, seemingly from thin air, and watch again as they disappear’, (http://franticworld.com/what-is-mindfulness/)

Mindfulness is about noticing what your body and mind are telling you, and then being able to react more calmly to things.  One exercise is a mindful body scan where you focus your attention slowly through the body one part at a time.  Tensing up and relaxing muscles as you go so you notice the difference between the two states.

Mindfulness can help problems such as anxiety, depression and stress.  Some mindfulness exercises are often used as part of other therapies and workshops.  I have found some of the exercises helpful as part of laughter yoga and drama therapy.  I find focusing on my breathing sometimes helps me to clear my mind and relax.  However I feel that the word mindfulness has been corrupted as a marketing term to sell stuff from colouring books to health food snacks, and I refuse to buy anything labelled as such.  

Counseling

Counseling encourages you to talk about your feelings and emotions with a trained therapist.  They can help you clarify issues, explore your options, develop strategies and increase self-awareness.  I had counseling at university and later through my GP surgery.  I found it slightly helpful at university as she gave me some strategies I could use, but the other counseling I had achieved nothing other than me talking about my issues and going round in circles.    

Anger Management

Anger management aims to help you understand why you are angry and find a healthier way to express yourself.  CBT is often used in anger management to help deal with negative thought patterns.

I had some anger management as a teenager, whilst the relaxation part helped a little bit; I feel I was not mature enough yet to put the techniques into practise properly.  I was also depressed off and on at the time which may have not helped me to make the most of it. 

Group Therapy

Group therapy is a form of psychotherapy in which one or more therapists treat a group of clients at the same time.  Some uses CBT or mindfulness.  Group therapy tends to be focused on one particular issue such as addiction meetings, a shared illness or mental health condition or a traumatic experience you may have in common.  Some groups use skills training as therapy such as art, drama or music.  Group therapy has several advantages such as knowing you are not alone with the shared experiences and feelings, sharing ideas and information and hope when you see others recovering.

I had some group therapy in my early teens which used activities and discussions to help us.  Whilst I feel I did benefit slightly from it, I feel that it was hard to make the most of it due to some of the group not really wanting to be there.  I also feel that some of the group could have been a bad influence on me had I been more vulnerable, trying to persuade me during the breaks to take up smoking for example.

Laughter Yoga

Laughter yoga is a group therapy based on the idea that laughter is healthy, both for the mind and body.  Exercises are done to create laughter, starting with forced laughter; it usually turns into real laughter.  It uses chanting, clapping and games to encourage a sense of playfulness.  It often uses elements of drama therapy and visualisation techniques.  Yogic breathing is done in-between laughter exercises, relaxing the mind and body.  At the end of each session laughter meditation is done using some elements of mindfulness. 

I first encountered laughter yoga about three years ago and then last summer I started attending a new weekly session run by a friend of mine in the town where I live.  It helps me to relax and de-stress.  It is not hard work and I find it great fun.  I can understand it might not be for everyone, you need to be fairly comfortable with letting yourself go in front of others, (my drama background maybe helpful in this).  However I highly recommend giving it a try as it is my favourite form of therapy I have tried.

Drama Therapy

Theatre techniques are used to help personal growth and mental well-being.  Drama therapy is often used in schools, prisons, hospitals and in work places to promote team building and healthy working relationships.  It involves role play, voice work, movement and storytelling.  It can help people explore personal and social issues.  It helps some people learn to express themselves better.  As part of my drama studies over many years I have done a few workshops using drama as therapy to explore various topics. I think workshops have great potential to help a lot of people, but it has to not be forced on people as some could be very uncomfortable with it and not everyone is able to do things like this in front of a group.  

Self Help Books and Online

Often I have found that self-help is more effective.  I have read a few books on autism and mental health and used various online message boards and chat rooms.  Also I have watched some documentaries on TV about my issues.  I have often learnt more about how to help myself from these things than any professional therapy I have had because I can pick and choose what elements to read and watch and do it in my own time.  I also feel less pressure to recover or learn a technique in a set time period.  Plus the ideas are not restricted to the NHS guidelines which often appear very strict and limiting.

Hobbies can also be a kind of therapy, for me writing is like that.  Writing my thoughts down is helpful, so I keep a daily diary.  Writing this blog often feels as satisfying as therapy.  Sharing my issues, anxieties and feelings often helps me.  A lot of people seem to find art therapeutic.   

I have found therapy is a very personal experience and what works for one person, maybe less effective for another, even with same diagnosis.  It is worth trying different therapies or even retrying one at different stages of your life.  What may have not helped as a teenager, maybe more effective when you are more mature and not forced into it by your parents.  Do not just rely on what a doctor can refer you for, but do your own research into what is on offer in your local area outside of official medical channels.  There are other kinds of therapy that I know less about that maybe worth looking into.  Sometimes people need a combination of therapy and medication which is perfectly valid, it does not mean therapy has failed if you also need medication.  Therapy also requires will power and wanting to learn from it, being ready to get well, forcing it will not work.

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 3^rd 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.

My Monthly Rant (sorry guys!)

‘Do you not know I am a woman? When I think, I must speak.’ In this case about periods or menstrual cycles as they are also known. Periods are something all women experience (bar medical reasons) and when mine started I knew this. However this did not help me to feel any better about them. I know most girls find periods a bit scary or worrying at fist and take time to adjust to them, but I totally hated them. I became afraid of my periods. As someone with OCD the messiness of them did my head in. I struggled with sanitary pads since I always had issues with certain things against my skin, which is an autistic trait I had much more when younger. I briefly tried tampons, but with my bad hip struggled to use them. Then there were the stomach cramps which at times had me doubled over in pain crying. Puberty and hormones are all part of being a teenager, but add in autism and OCD and you get one very messed up person. I hated how periods made me feel mentally each month. In the end the anxiety got so bad my mum took me to see the doctor.

The doctor put me on ‘the pill’ which was life changing. I had more control over when I had a period, so could time it for when I had less stressful things going on. The pill made my periods a bit lighter which made them easier to deal with. My stomach cramps became less frequent and less intense. Gradually I became less afraid of my periods and learnt to cope with them. I am very grateful my mum took me to the doctor and got me on the pill, which I still use to this day.

I got used to sanitary pads in the end. I learned which ones I found most comfortable and worked for my needs. However over the years buying pads has become trickier. They keep coming up with new versions and the choice is now huge. I can spend ages in some shops just staring at the range of pads trying to find the ones I want. I also find a kind I like, and then they change them or stop stocking them. I would rather they kept it simple. I mean who an earth came up with ‘wings’, are my pads supposed to fly?! I think the idea is they are supposed to keep the pad from bunching up so it stays flat, but in my experience they tend to make things worse if anything. Before you even use the wings I find they often stick to themselves. I like the pads without wings, which you can still get, but are becoming increasingly rare. Larger shops tend to still stock then, but smaller shops often do not. Then there are pads with added fragrance, often aloe-Vera, which considering how many women are sensitive in that area seems daft. The fragrance can irritate and make things sore and just how much are other people going to smell a woman’s intimate area anyway? A fairly new one is ‘discreet’ pads. Supposedly rustle free wrapping for use in public toilets (although they don’t seem all that rustle free to me). However as a woman in woman’s toilets I do not mind if I hear other women unwrapping pads, it is hardly unexpected or offensive. Besides I hardly ever notice the noise from other cubicles anyway and it was a non issue for me.

Some sanitary pads seem ludicrously expensive, I will admit I do not use the cheapest brands, they feel plastic like and often do not stick down well, but the mid price range seem fine to me. Although sometimes you have to use what you can get in an emergency. Recently I saw an article online about tax on sanitary wear, often known as ‘the tampon tax’. It is wrong to tax sanitary wear when other items deemed essential are not taxed or at least have reduced tax. Although one woman was quoted as spending at least £10 a month on her sanitary wear which is far more than I have ever paid. I do realise how lucky I am to have cotton soft pads now. My mum told me about sanitary belts which sound very uncomfortable and tedious. They were an elastic belt used to hold pads in place before the invention of self-adhesive pads.

Is it just me or are adverts for sanitary products really daft? I do not do most of the things the women in the adverts do even during the rest of the month when I am not on my period. I have a really good sanitary product now so I can do anything, no, it does not make me super woman. Then there are the adverts trying to sell my pads almost as if they were a fashion product with pretty floral designer pattern on them, err why? I don’t care if you draw floral patterns on the pads or not, what I want to know is do they stick well and do they absorb well?!

I am now fine with my periods mostly. This may sound daft, but I am actually quite proud of myself for overcoming this issue. I am glad I live in a more open time when periods can be discussed more than they used to be and sex education in schools is getting better. I found the talk the school nurse gave us in year seven (aged eleven/ twelve) somewhat helpful. However I do think some girls need more support in learning to cope with periods, especially special needs girls with learning difficulties or anxiety related conditions or autism. Girls need help with the emotional side of periods as well as the practical physical side. I am very glad my mum never hid periods from me and I always knew they were something to expect. It must be terrifying to get one without knowing what it is, which I gather used to happen more than it does now.

Before anyone male complains I know boys also have puberty and hormonal issues, especially as teenagers, but not being male I have nothing I can say on this, other than I think they also need good sex education in school and probably more emotional support than they often get.

My Experiences of the NHS Mental Health Service

 

I would like to share my experiences of the NHS mental health services.  I have found it a patchy service at best, with very little flexibility.  I am not saying that you should not seek help with mental health issues, there are some positives in the mental health system, but it is far from an ideal service and needs a lot of changes to make it work better for more people.

My first experience of therapy for mental health came aged eleven or twelve when I was referred by my GP after my mum asked.  I think she had to ask more than once.  I was diagnosed with OCD by the psychologist.  I had talking therapy once a week, often with my mum.  I got a new psychologist later who put me on medication for my OCD.  I am still on that medication.  I think it used to help, but no longer think it does anything for my OCD.  No doctor willing to properly review it.  One doctor did agree it probably did nothing for me now as I would have become immune to it and put me on a much lower dose as you can’t simply come off it. I know it is one of the hardest medications to come off and the side effects of not taking it for three days once when I ran out at university were awful.  I do not know if the medication has any side-affects as I have been on it so long I am no longer sure what is me and what is the medication.  It could be one of the reasons I am tired so much and would love to be able to try life without it, but right now that does not seem possible.

I started group therapy once a week for a couple of terms.  I am not sure if it was helpful or not, but I liked going as it got me out of school for the morning.  The trouble was I did not fit in with the others very well and some of them could have been a bad influence.  Some of the girls tried to talk me into smoking with them during the break, not that I ever did.

Autism, more specifically Asperger’s syndrome were raised as something I may have.  I can’t remember if it was my mum who brought it up or if my psychologist mentioned it first, but I remember it being discussed.  However I never was sent for testing, which I do not understand as I clearly had major issues and think it would have helped a lot to have a formal diagnosis.

At the age of thirteen I left my first secondary school as I was being bullied very badly and the school was not really addressing it properly, nor were they helping me with my mental and physical issues which were clearly getting worse.  I ended up spending a term in a new education program for children struggling with school run by the childrens mental health services.  It was just a classroom in the mental health services building and not really a school, but it was better than nothing.  Then I ended up in a special needs school, supposedly for those with physical disabilities, but I think my hip was just an excuse and really it was the fact that no other school would have me and the education authority did not know where else to put me.  I think my report from my previous school may have put other schools off.  I admit I had become very difficult to teach by this point, having become very angry a lot of the time and not really being able to handle it.

I had anger management therapy for a few sessions with a mental health nurse.  This was based around mindfulness.  It helped me a little bit, but mindfulness only works if you can feel the anger coming before it is too late, which often I cannot.  The trouble is I tend to go from fine to angry in about a nano second, which gives me no time to put the mindfulness in place.

When I turned sixteen I left the children’s mental health service and that seemed to be that.  I was not transferred to adult services.  Some years later I asked my GP for support with my mental health and I was offered counselling through my surgery.  It was not very helpful as I did not get many sessions and I do not think the guy really understood my problems.  A few years later at university I had some counselling that was more helpful to me.  I think it helped that she was used to working with students so it was more tailored to my situation at the time.  She taught me about mind maps, which helped with my coursework to make it seem less daunting and stressful.

Since then I have gone to my GP for support with my mental health and been told about the anxiety and depression service.  I have tried this service twice, once for depression and once for my OCD.  As a self referral service I found it hard to get an appointment.  Last time I had to ring them three times before they answered the phone and they totally ignored my emails.  For depression this is not helpful, a depressed person is not very likely to keep trying once they fail to get through.  Once you do get an appointment you are told you get twelve sessions mostly over the phone.  I found phone therapy very unhelpful as it meant I could sit at home and wallow in my depression or lie about how much of the homework I had actually done.  I found the phone calls quite uncomfortable and would just say what I thought he wanted to hear to get it over with as quickly as possible.   When it came to therapy for my OCD I found it pretty much useless.  The only kind of therapy they seem to offer is CBT (Cognitive Behavioral Therapy).  At first the program seemed to be helping a bit, but I soon realised it only got rid of one OCD trait to replace it with another.  The therapy never looked at the causes of my OCD behaviour, just the individual symptoms.  Despite specifically asking to have only face to face appointments, I was soon given only phone calls, which were not very affective.  The next stage was to sign me up with an online program that only therapists could add you to.  Some of the exercises on the program required that you logged in daily to the site.  I did tell my therapist that I was in the process of moving and had no internet in my new flat, but despite this she kept on at me to use the program.  Some of the exercises were simply impossible to do in the local library where I often access the internet.  In the end I gave up as even the exercises I could do seemed to not be helping.  I have since been told that CBT will not help me anyway as I am autistic and it hardly ever works for people on the spectrum, so that was a waste of time.  No other service is offered for OCD on the NHS in my area according to my GP.

Last year I was finally diagnosed as High Functioning Autistic or Asperger’s after my mental health assessment flagged it up as something to get tested for.  I was about thirteen when it first came up as a possible diagnosis and it took till I was thirty-one to be tested!

I find it hard to get a GP or anyone else in the health service to take my mental health problems seriously.  I have never self-harmed or been suicidal which maybe one reason I get so little support, despite finding my anxiety and OCD crippling some days.  I have never had a psychologist as an adult.  I did get some support from one GP after I cried in an appointment and asked to sign on as too sick to work.  She got me a mental health assessment, the first and only one I have had as an adult.  This did help as it led to some positive changes in my life.  However I think it helped that I had changed surgeries not long before this as my previous surgery had always seemed to dismiss my mental health problems.

I think mental health services need to be more flexible to meet a patients needs.  People end up costing the NHS more if they are left till they are so ill they need hospitalizing or longer term care.  CBT and mindfulness therapy is proven to work well for a lot of people, but it is not going to suite everyone, yet they seem to be the only things the NHS offer.  Even if it does help, you get so few sessions that as soon as you make a tiny bit of progress the therapy runs out and you go back to square one.  I think the NHS would save money if they invested in better mental health services, as some physical symptoms can be brought on by mental health issues being left untreated.

 

Alcohol is not for everyone

I have given up drinking alcohol. Since mid December last year I decided that alcohol and me do not suite each other. Some of my friends have questioned this abstinence and do not really understand why I have done this. So I have written down my reasons for no longer drinking and hope it helps others to understand that alcohol is not for everyone.

Before I start I would just like to say this is not an anti-alcohol rant, I have nothing against people having a drink and do not mind if people have a drink in front of me.

• Health

Alcohol is a poison, ‘Your body can only process one unit of alcohol an hour. Drink a lot in a short space of time and the amount of alcohol in the blood can stop the body from working properly’, (www.drinkaware.co.uk). Not only can alcohol effect your liver, it can affect your stomach and digestive system, your kidneys and in fact most of your body systems.

Alcohol also has a big effect on mental health. Alcohol is a depressant, at first it may help to relax you and make you less anxious, but after a while it can make things worse. I certainly felt a low mode sometimes if I had a heavy night of drinking. Drinking can become a vicious circle, drinking to reduce your depression and anxiety, but actually making it worse long-term.

I already have both physical and mental health problems, so I decided it was not worth the risks to make them worse. I can get quite depressed and anxious without the help of alcohol and last time I was very drunk I felt even more low than normal the next day.

• To stay in control of my emotions better

As an autistic person I sometimes struggle to control my emotions. When I am not feeling at my best I can get very upset or angry easily. When I was drinking I noticed that it often just amplified the mood I was already in rather than relaxed me. So if I was feeling depressed or anxious it just made that feeling worse. ‘Regular drinking lowers the levels of serotonin in your brain – a chemical that helps to regulate your mood’ (www.drinkawear.co.uk) so it was bound to make me feel worse since I am naturally a rather anxious person. Also I have noticed that some people become more angry when they are drinking and more sensitive to things they would normally dismiss as not important, which is not a good way to keep healthy relationships with friends and family.

• Weight

According to an article in Elle magazine ‘When Alcohol is in your system, it’s harder for your body to burn fat that’s already there’ (www.elle.com). It slows down the rate at which fat is broken-down. Not only that, but drink itself full of calories and sugar. For example cider (what I used to drink most) has 216 calories on average in just one pint. A 175ml glass of wine has 159 calories. A pint of beer has 182 calories on average. In other words alcohol is not a diet drink and can help you gain weight. ‘People eat about 30 percent more food when they consume alcohol’ (www.elle.com) which is something I can relate to. After a night out drinking I always feel hungry, and often end up getting some kind of greasy burger to take home. The large queues at the late opening fast food joints show that this is true for many people. I already enjoy my food a lot and do not need any help to eat more.

• To Save Money

If you have any taste buds and drink not just to get out of your mind, but actually enjoy the drink itself, you will not be able to drink the cheapest alcohol on the market, such as that shockingly cheap cider you see in stupidly large bottles in most convenience stores. I tried that stuff once and I decided that I might as well just be drinking paint stripper it was so disgusting.

• Have a good time without anyway

I still go out and have fun with friends without alcohol. I go to a pub quiz most weeks and enjoy it despite sticking to coffee and fruit juice. In fact I think I might be better at the quiz with a clearer mind and no alcohol to make me unfocused. On a night out with friends I sometimes feel a natural buzz from the atmosphere around me and don’t need drink to feel like I am having a good time.

• Hangovers suck

To state the obvious hangovers suck. When I was younger I used to hardly get hungover, just a dry mouth and a bit of a headache, but the older I got the worse the hangovers got. Being autistic I cope very badly with feeling unwell, I am overly sensitive to even a small amount of pain and I panic when I feel sick. Hungover me was not pleasant for other people to be around. I decided to try and avoid having to feel that way as much as possible. To those who start coming up with hangover cures the NHS website tells us ‘there are no cures for a hangover’ (www.nhs.uk/livewell).

• To stay safe

After a night out I have to get home again, often alone, I would like to do this with all my faculties intact so I can look after myself better. I would rather not have to go home alone late at night, but sometimes it cannot be avoided, at least when sober I am less likely to end up in difficulty. Alcohol dulls the senses and slows down reaction times, which when walking home can be a dangerous thing.

• Less chance of making an idiot of myself when sober

When you are the only sober person on a night out, you can see how much alcohol is affecting people. They do things they would normally not, sometimes embarrassing, stupid things. People tend to flirt more when drunk and this can lead to some awkward situations, and sometimes not very safe situations. People often become less careful about what they say out loud and this can lead to saying some hurtful or embarrassing things. Also when drunk people are more clumsy. I know that I used to trip up over my own feet more and found stairs and curbs of pavements tricker. It can be embarrassing and very annoying to spill your drink all over yourself.

• Supporting my boyfriend who is trying hard to stay off drink

‘Substance abuse in general (that is the abuse of alcohol or the use of street drugs) is a significant problem for people living with schizophrenia, with over half of all people with schizophrenia having co-morbid drug or alcohol abuse issues’ (www.livingwwithscitzophreniauk.org). My boyfriend has schizophrenia and has had alcohol issues for most of his adult life, but is now trying very hard to beat his alcohol dependency. He simply cannot have just one or two drinks; once he starts he ends up having more and more until he is unable to function properly. He so badly wants to live his life without alcohol and has managed to not have a drink for well over three months now. I admire him for this as it is very hard to give up any addiction, let alone when you have a mind that races all day long and will not shut up. So for obvious reasons we cannot go to the pub together and I would rather not have a drink in front of him. I hope by not drinking I am showing him it is possible to live life happily without alcohol.

I am not saying I will never drink again, I might well do, but right now I just do not want to.