Thursday 28 August 2014

Addiction v Dependence

I will put my hand up and tell you right now that I am addicted to living a pain free life as possible. Sounds sensible doesn't it? Sounds almost like a human right to be free from pain. So why do the majority of people (including medical professionals) still assume that Morphine or any opiate is a medicine only the terminally ill should have access to?

I should probably admit my other addictions just so I am being totally honest nicotine is one (a hanging offence I know), Caffeine is another and lastly Food. I can over eat in a way that would make a competitive eater think he or she had just had a "snack". My favourite bingeing foods of mine are jam tarts, danish pastries and jam doughnuts (jelly doughnuts for my friends across the pond!). On a binge I can probably consume close to the body weight of a small toddler, luckily binges are few and far between now and are usually triggered by extreme stress.

I want you to take a long hard look at your own life and think about what it is you couldn't live without. I could live without everything I mentioned as long as I could lead a pain free life.

I keep my consumption of morphine reasonably quiet not because I am ashamed that I need to take this medication to get out of bed and be able to function but because of the ignorance in the general population about opiate painkillers. Most people have heard of morphine but they associate its use with terminally ill patients and mainly those dying of cancer. 

Mention that you take morphine or any opiate and 9 times out of 10 you are greeted with "but you will get addicted" I want to scream back "what's wrong with being addicted to a pain free / less pain existence?". I dont say anything to them when they mention addiction because I can already see them looking at me as if I am some sort of junkie and they are checking that they still have their handbags and wallets. If that is their attitude to the revelation I am on morphine then there is no point trying to explain the difference between addiction and dependence. Their minds have already been made up.

An addiction to morphine or any opiate means you use the drug to get high. Your whole life revolves around the next hit, remember the film "Trainspotting"? I can tell you now I have never had to smuggle my morphine inside any of my body cavities or dig a packet of pills out of a poop filled toilet! I have never stolen to support my use of prescribed morphine, my arms are not filled with track lines. I do not spend my days in a drug addled haze. I am not a junkie.

Dependence is a completely different kettle of fish. Dependence means my body will go into withdrawal if I don't receive my dose of morphine as an addicts would. I don't get "high" using it, I don't spend every hour of everyday craving more. I don't take more than I have been prescribed and I don't run out of my medications before my next prescription is due. I take my prescribed dose and that is all. Its not used to blot out life or emotional pain its used to get rid of the awful pain Ehlers Danlos Syndrome has wreaked upon me. That is the difference between an addict and someone who uses an opiate to relieve their pain.

It has taken a very long time with me being in pain everyday before I got to the point where nothing was working and both my gp and I decided that the only option left was morphine. By the time we got there I had been experiencing daily high levels of pain for over 12 years. I had been ignored by previous doctors when I complained about pain and for a few years I had been self medicating using codeine and paracetamol (acetaminophen). I was worried that I was addicted to the codeine and would sparingly take it however a pack of 32 (which was all you were allowed to buy at one time due to the law in the UK) would barely last me a week. I was also suffering side effects from the codeine which meant I got constipated and in turn developed hemorrhoids. I know my honesty has left you blushing again.

Before getting to point where morphine was the only option left, I had tried every painkiller known to mankind, from over the counter products to prescription only medications. The only thing that took the edge off was codiene but that was losing its potency as my pain reached record levels. At this point I was still working and I had developed bursitis. Due to the pain I was in I was prescribed oramorph. For the first few days I felt horrendously sick and as if I had had a little too much to drink but the pain was gone. When I say pain I dont just mean my hip joints but also the pain in my spine and my legs. I was able to work whilst taking the oramorph, my decision making skills were not impaired and I didnt resort to shoplifting to fund my habit. 

Once the bursitis resolved the oramorph was no longer prescribed and the pain from everywhere else returned. I would like to point out that I didnt go through a detox programme to come off the oramorph, I just stopped taking it. I was lucky I had no withdrawal symptoms. So was I addicted or dependent on it or was I just seeking a pain free existence?

The morphine I am taking, in a relatively small dose no longer leaves me pain free. When I started taking it my pain levels were at a 9. I had been bed ridden through pain for around 3 weeks. The morphine worked almost instantly and my pain levels went from a 9/10 to a 2/10. I was started on the dose of 10 mg every 12 hours in 2011 and for over 2 years that worked wonders. Last year my dosage was increased to 20 mg every 12 hours. I have had to add in oramorph (liquid morphine) to deal with breakthrough pain. Regular readers will know my back causes me endless problems but I also have issues with bowel adhesions which cause me pain.

I dont just rely on morphine to ease my pain. I use distraction techniques such as watching a DVD, phoning a family member or hot water bottles applied to which ever area is hurting the most. Some days I don't use the oramorph at all. Other days I need to increase my slow release morphine by 10 mg and take oramorph every 4 hours. Most days I may need one or two doses of oramorph to deal with the breakthrough pain. I have been taking more recently due to the issues with my back.

This is still a relatively low dose of morphine, the starting dose for cancer patients is around 60 mg every 12 hours. So as you can see I am nowhere near that kind of dose. I try to keep my morphine dosage to the lowest amount possible as I plan to live a long life and I dont want to run out of pain medication options by the time I hit 50. My insistence on keeping my morphine dose low means that there are days when the pain is unbearable and I don't know what to do with myself.

My husband gets angry when I get into a situation where the pain is out of control because he knows it could take hours if not days for me to get back on top of it again. This means I am stuck in bed, electric blanket on and hot water bottles stuck to the places the heat of the blanket won't reach. Hubby says  "you have the medication there, why don't you use it?" The truth is I don't  really know why I fail to use it. I worry that my doctor will think I am abusing my prescription medications if I run out before I am due for a refill or that I will become so out of it that I will spend my life zombified. Its a really difficult balance to obtain, to reduce the pain enough to be able to carry on with daily life or not take enough and be confined to bed. 

As you can see its not an addiction but a human right to be able to live my life with as little pain as possible. When I see reports from America where certain states are making it incredibly difficult for chronic pain sufferers to obtain their medications it scares me. I have heard about the pain clinics that people have to drive hours to get to because many doctors now refuse to prescribe opiates to all but the terminally ill. The mandatory drug tests before you can have a repeat prescription. Pharmacies refusing to refill prescriptions or making the patient complete enormous amounts of paperwork before allowing them there medications. Heaven help you if you use different pharmacies to get your medications as those in charge will see that as suspicious behaviour and call your doctor who could then refuse to provide that medication in future. 

I worry that there are doctors in the UK with the same mind set. My paternal Grandmother is in her 80's and has degenerative disc disease. She receives steroid injections into her spine every 12 weeks. However its not uncommon for the injections painkilling properties to wear off well before the 12 weeks are up. When that happens she takes the synthetic opioid called Tramadol (which is used before you go onto morphine). When she has seen different doctors at her surgery they have told her they want her to stop taking the Tramadol in case she becomes addicted. In her 80's I would have thought dependence on opiates would be the last of her worries. Being as pain free as possible should be all the doctor is caring about.

Under treating pain is a massive issue throughout the world not just in the UK. Poorly controlled pain can lead to other medical issues like high blood pressure, raised cortisol levels, depression and suicide. Treating pain effectively stops all those things. When I am in pain its the only time my blood pressure is in the normal range or on occasion when in agony I have hit 130/90. Doctors tend to under treat pain for a variety of reasons, the patient isn't clear about how incapacitating the pain is and when a medication doesn't work they don't go back to their doctor (I have done this) or the Doctor doesn't believe how much pain the patient is in or the doctor doesn't believe in prescribing opiates due to fear of  the patient becoming addicted. 

Please understand me I am not saying every patient in pain requires opiates there are many other types of drugs that can be tried first before resorting to them.

When the doctors can't tell the difference between Addiction and Dependence we have a problem. Unfortunately the media likes to portray anyone who isn't terminally ill that takes morphine or any other opiate based medication as a junkie. I would like these people to live one day as we do but without the painkilling medication and see how they get on.

Monday 25 August 2014

My visit to the Neurosurgeon

A week or so ago I saw a neurosurgeon regarding the awful pain my back is causing me that also radiates into my legs on a bad day. I decided to pay and see him privately so I avoided the obligatory physio sessions that you have to have on the NHS before you get anywhere near a neurosurgeon.

My back has caused me problems all my life. Since the age of 16 I have herniated discs. I had to sit my a-levels wearing a soft collar because the week before the exams started I had to push my broken down car out of the way of traffic. Whilst pushing the car I slipped and that was all that was needed to provide me with a few weeks of horrendous pain. Not great when all of the exams were at least 2 hours long and would be sat at a desk. My doctor at the time provided the exam boards with a note to give me special consideration as I was answering questions through a haze of painkilling medications and I was also allowed to be seated at the back so that at regular intervals I could get up and move around without disturbing the other students.

In 1999 I injured my back severely during a cool down after an exercise class. Again I had herniated a disc and was in severe pain for several weeks. Unfortunately I worked for probably the most unsympathetic boss ever who despite being informed of my injury still expected me to charge around here there and everywhere with gusto. 

This back injury had lasting effects - the side of my left foot went numb and from then on I have never been able to ride a bike without my nether regions going numb. Thats probably too much information for some of you but I like to be completely honest. When I saw a gp regarding the bike riding issues I was laughed out of the surgery. I recently discussed this with my current gp, one of the good guys and he was flabbergasted that such an issue would be treated in this manner. He had no issue at all sending me for a private referral and understood my reluctance to be treated by the same physio I had a few years earlier, who claimed to be a specialist with EDS but had no understanding of autonomic nervous system issues.

I had to pay £185 for the privilege of seeing my neurosurgeon, which in the world of private appointments is small change. The most I have ever paid was £430 for a private MRI and the most I have spent on a private consultant is £300. My eyes are watering as I tot up the amount I have spent outside the NHS since 2007 trying to find answers for my health issues. If only I had known I would find my own answers through Google! However it was still a battle trying to get referred for the appropriate tests on the NHS.

The neurosurgeon I saw works out of a tiny clinic in a village less than 15 minutes away from where we live. Travel is a nightmare for me so to avoid having to go into the city was a bonus. Parking was easy unlike the large hospital where if you arrive after 9am your chances of getting a disabled parking spot are virtually zero.

The Neurosurgeon greeted us at reception, he seemed very hands on unlike all the other consultants I have seen either on the NHS. All the other consultants I have seen regardless of who they work for seem to send someone else out to fetch their patients. My NHS hospital consultant always comes out and gets me, I find that is a much more approachable way of doing things instead of immediately creating a barrier between patient and doctor. It was a long walk between reception and his office so I was immediately regretting using crutches instead of my wheelchair. The building itself had seemed quite small on the outside, inside however it was labyrinth like.

We reached a tiny little room at the end of a long corridor, where immediately the doctor took our coats and hung them up on the back of the door. Inside was a desk 2 chairs and an examination bed and the obligatory model of the human spine! 

It was nice to know that the doctor knew my own gp on a personal level and he also had the same air of familiarity about him. I was asked the question that irritates me the most "do you work?" and I explained that I hadn't since 2008 and the reasons why. For more info on my feelings related to that question please go to the blog post "Do you work?" at blogger or WordPress . 

We then had a quick run through of my symptoms and I was asked to gauge out of 100 my back pain assigning one percentage to my leg pain and one percentage to my back pain. Initially due to my issue with numbers in general due to my dyscalculia I didnt get what he meant. Which made me look a wee bit silly. So bless him he explained it in a clearer way for me. "Eureka" I've got it! I explained the majority of my pain was felt in my legs I assigned 70% to this and then gave the remaining 30% to my back. Now although I wrote in my post about B12 deficiency WordPress / Blogger that my leg pain reduced after my first B12 injection it hasnt gone and on a bad day it is still unbearable. The bad days have no correlation to my loading doses and my left foot is still numb. I know its early days with the B12 treatment as you continue reading you will understand that there is an issue with my back and that is causing some of the pain in my legs.

Once he had gone through the various questions he needed to ask me I had to be examined. Luckily it was just a case of removing my shoes and my top not exactly a comfortable experience. He asked me to point on my spine where I felt the pain. He then poked and prodded my back asking "does this hurt?" as I squealed in pain and tried to peel myself from the ceiling. He then asked me to bend forward and touch my toes. Now looks can be deceiving, I am not the trimmest of specimens and logic would say I would be lucky to be able to reach my knees. However due to the Ehlers Danlos Syndrome I placed the palms of my hands flat on the floor. The dr responded with "blimey you are bendy!"

I am sure many doctors see the diagnosis of EDS and don't quite believe how flexible we are, especially if like me you are a little on the large side. I am incredibly flexible and my back is probably the bendiest bit which is why it gives me the most trouble. He then took me through the Beighton Scale, almost as if to re-confirm the diagnosis. As I know what the scale is I threw in a few extras for free just to freak him out! My Beighton scale has been upped now from a 7/9 to a 9/9 as previous doctors didnt think my elbows were hypermobile. This doctor did but it just goes to show how subjective the scale is and how it should really be measured with instruments rather than the naked eye.

Having "proved" once again that I do have EDS I was then made to lie on the examination couch. I had to do various exercises like push his hand away with my big toe and then with my feet. All went really well until I had to elevate my legs. The right one went up so far and so quickly if I had not been careful I could have bashed myself in the face. Its not something I ever do at home so I wasn't expecting the left leg to be any different. Bizarrely I only managed to lift it a little before it became stuck and would move no further. The doctor must've seen the look on my face because he asked if I was in pain. The answer was no, my face was displaying sheer panic. It just wouldn't move any further and was stuck. It caused no pain at all. Its very hard when you are used to your limbs being elastic and they suddenly aren't the same anymore.

Examination complete he asked me to get off the examination couch and get dressed. Thats where the fun started! When I get up from a lying position I have always found it easier to roll onto my side and lift myself up. Only my back was having none of it and my arms werent much use either. I lay their stranded like a beached whale. He offered to help but I declined embarrassed that I couldn't do the simple task of sitting up. After what seemed like an eternity I made it to a seated position. This was still too quick for my body and I ended up having a pre-syncopal episode. 

Once I finally made it back to the chair he took out the model of the spine and went through what he believed was wrong. Apparently I am showing the classic signs of Facet joint arthritis. At 40 I am a little young to have this condition (its mainly found in people over 45 who have been athletes, dancers or done hard manual labour) but EDS can cause early onset arthritis. I suspect I have a touch of arthritis in my fingers also as they can be very stiff and painful on waking. He then went through my back / leg symptoms and said they were all pointing to a nerve root compression at S1. The fact I couldn't lift my leg was a textbook symptom. Luckily all my reflexes are intact, my mum who has the same problems as me is much worse having lost the reflexes in her leg and therefore requiring extensive surgery.

He then went through the various treatment options however we will know more when I have an MRI scan later this week. I will be booking an appointment to see him once its been done, thats another £130 privately. I could be waiting several months on the NHS for an appointment to do exactly the same thing.He will then go through the results of the MRI scan with me.

Its really stupid but I am terrified that the MRI will show nothing at all and I will be accused of making up all my symptoms. Its a pretty expensive way of getting attention but thats not what is going on. My phobia about doctors is just kicking in and although I know I am showing textbook symptoms I can't shake the element of doubt rattling around my head.

My options are depending on how bad the damage is  are injections or a nerve root decompression operation. The nerve root may need to be decompressed on both sides of the vertebrae as I am developing symptoms on my right side also when its a bad day. The doctor informed me an operation like this doesn't come without risks and he would go through them at a later date. He is sure however should I have an operation the pain will be gone when I come around from the general anaesthetic.

My operation would be carried out on the NHS, I just don't have the funds to pay for it myself. The surgeon also works for the NHS and would do the operation himself rather than pass me off to another surgeon. I told him if I had the operation he would be the only one doing it. I asked my gp when he referred me to this surgeon who he would have treat him. He answered this neurosurgeon, I trust my gp's judgement.

At the end of my appointment the Neurosurgeon warned me that after the examination I would be in pain, he wasn't wrong. I ended up having a flare that lasted three days (where the pain was close to being a 10/10 on the pain scale) and it's taken until today (15 days later) for it to completely settle down. When I say settle down I don't mean zero pain, I mean a pain that I can deal with and that goes away with additional painkillers should I need them.

Since the examination I have found that there are now things that are acting as triggers and exacerbating the pain. Bending forward is causing a lot of back pain and I am locking up more frequently when I try to straighten up. Maybe its just because I am more aware of the issues with my back where as before I adopted the head in the sand technique who knows?

Of course I will update you once I have had the scan.......

Willow keeping company whilst I recovered in bed after the appointment.

Thursday 21 August 2014

Anger - I have my ranty pants on again!

Warning this could get a bit ranty!

I am not an angry person. I am actually quite a forgiving person until you push me to the point of no return. It takes quite a lot for someone to push my buttons enough to get there but once they do they are left out in the cold forever.

What makes me so very angry at the moment is people who ask how I am or how my last doctors appointment went and either a) as you tell them their eyes glaze over and you can tell they can't wait for the conversation to end, b) by the questions they ask or the facial expression they display shows their complete disbelief  in what you are telling them or c) ignore completely what you have just said and turn the conversation back on themselves - their favourite topic of conversation.

I wonder if its my fault that my answers are greeted with these responses. Like all people with a chronic illness or condition I am quite stoic. I try not to moan as I get bored with it also. 

Is it because I don't grimace with every move?  Is it because I don't make it the sole topic of every conversation I have? Or is it because when I am around others I will push myself beyond my limits only to collapse when they have gone? Is this why when I am having a rough time and can't do the things I normally would that I am met with a complete lack of understanding?

I am in excruciating pain right now despite my arsenal of medications that are available to me. At present it is my back and left leg that is causing all this pain. My pain was under control until April this year and its slowly getting worse. You (the people I am talking about)  don't see the nights I am kept awake by pain. The days I have lost due to being confined to the sofa or my bed swathed in hot water bottles desperate to ease the agony and mess my back is.

Why do you constantly expect when you to talk to me for me to answer that I am ok / fine? Why ask if you dont care/believe or are bored by it all? Believe me I got bored of this shit years ago but I can't lie when yet another diagnosis has been thrown my way. Despite your disbelief, lack of care of empathy my condition still exists. I am so sorry I don't fit in with your preconceived ideas of chronic illness. This is what makes me so very angry.

I am angry that despite me getting a diagnosis from a neurosurgeon that I have spinal arthritis and there is nothing they can do. The bones are crumbling away, I am 40 years old and I am screwed. I am sorry that you don't get that the doctor also believes I have a nerve root compression that has left my leg numb in places and in excruciating pain in others. I am angry that despite me telling you this you don't actually care and I am beginning to wonder what actual purpose you serve in my life other than being completely unsupportive.

I am angry that because you can't "see" my disability and that it conveniently gets forgotten. I don't fit what with what you believe is disabled because I have all my limbs and I am not sat dribbling in the corner. Am I disbelieved because I try so very hard to fit in and be accepted. Just because I use a wheelchair / walking stick / crutches / frame does not mean I changed as a person or that my mental capacity has become so reduced i don't see you for the completely shallow self absorbed person(s) that you are.

I am angry that due to this condition I get to see people at their very worst. I am angry that I am only contacted by you so that you have the latest gossip on me. When you relay it to your audience you can feign compassion and empathy so well but the truth is I won't hear from you for months again unless something happens to me and you can use my misfortune to captivate your fans again. That makes me very angry and can you blame me?

* * *

Sorry for the rant, this post was written on the day I had seen the neurosurgeon. Despite the fact it looks like I will have to have an operation for a nerve root decompression I am more distressed about the early onset arthritis in my facet joints. People were asking me how I was and this was the response I got from a small minority of people. It got me into rant mode, which I try not to do very often. As a result of a few peoples action I have decided to no longer post on my personal facebook account about my health and confine it to my The Myasthenia Kid page on facebook.

To soften the rant I have included the picture of Mollie below. Dogs dont judge they love you unconditionally.

Mollie showing me her tennis ball collection.

Monday 18 August 2014


I have always been quite an anxious person, culminating in an anxiety overload and a major bout of depression back in 1999. It took me a long time to get a grip of them through Cognitive Behavioural Therapy and pharmaceutical means. For a very long time I had considered anxiety and depression a thing of the past and then Friday 8th August my old foe anxiety / panic attacks came back with a vengeance.

Those of you who are regular followers of my blog know that I have been having treatment for B12 deficiency. Anxiety and depression can be a symptom of low B12 levels. That wasn't the case with me, my symptoms were pins and needles in my hands and pains in my legs. Both symptoms were worse on my left hand side.

To treat the B12 deficiency I had to have injections every other day (or as close as I could) of B12. My initial treatment was limited to 6 injections which doesn't follow any of the best practice guidelines but seems to be how those who are B12 deficient are treated in the county in England where I live. It has meant enormous upheaval for both myself and my husband getting me to and from appointments. Not helped by the fact my dogs have a voracious appetite for furniture if they are left alone. Some days my husband has been able to come with me, other days I have had to take a taxi alone.

Fridays injection would have been my fourth with two more scheduled the following week. I was going to take a taxi down to the surgery and if possible get one back home. All was going well until a few hours before I was going to leave for my injection. Out of the blue I was filled with a sense of panic. This is quite unlike me and the more I tried to calm myself down the worse it got. I simply did not want to deal with people or to leave the house. I had no knowledge of what the perceived dangers that lurked outside were, I just knew I could not go. As silly as that may sound to people that have never experienced that kind of thing.

The night before had been filled with nightmares, I had slept but on several occasions I was woken up by the sheer terror of what had played out in my dreams. The first dream I remember was I was involved in a plane crash. I am terrified of flying a phobia that has got worse over the years, so for me to be on a plane in my dreams is quite laughable it just wouldn't happen. The next dream was my house was enveloped in a swarm of bees. I was alone in the house and no matter how quickly I ran from room to room shutting doors and windows the giant bees (they weren't normal sized ones) threw themselves against the glass. I was filled with panic as I searched every room for my dogs trying to ensure their safety. As the swarm entered the house the dream obviously became more than I could handle and I awoke (again) with a start. Not a pleasant night....which has been followed with a night of insomnia what joy!

I mentioned my vivid dreams to my husband the following morning who remarked it was odd that I had suffered from nightmares as I normally never remember my dreams. Looking back now something was obviously troubling my unconscious mind. The plane crash was obviously my overly acute fear for my safety. It could be suggested that the plane some how signified the medical situation I was going to be in the following day but I think thats a stretch. The swarm of bees I think signified the danger of the outside world. Shutting doors and windows was a way of protecting myself from that danger. Who knows these are just the ramblings of someone who hasn't slept so far tonight. Its coming up for 2am in the UK as I write this.

As I said earlier I felt fine in the morning and really didnt give the dreams anymore thought until discussing the days events with my husband later in the evening. 

I loath feeling anxious about nothing specific. I couldn't tell you what the threat outside was that so filled me with dread. I sat on the sofa for over an hour wondering what the hell to do. I didnt want to miss the appointment, mess the dogsitter around or give in to my fears. No matter how hard I battled I just couldn't get in control of my fear. In the end I rang my husband at work something I try and avoid doing as personal calls are frowned upon. I talked through what was going on in my head. 

Luckily my husband has also suffered from panic attacks and anxiety in the past. He asked me if I knew what I was afraid of, told me that cancelling wasn't the end of the world. He would now take me to all my appointments and we would manage. It was so nice to hear his calming voice at the end of the phone. He asked me if I wanted him to come home, which I didnt need because the anxiety was about leaving the house. As long as I remained inside these four walls I felt safe.

By the time I had called my husband and cancelled everything else I was exhausted and slept for 2 hours solid. Its probably why I am unable to sleep tonight. I felt a wave of calmness start to wash over me and when I woke up I felt like I was back to being me again. The whole thing had seemed very odd and surreal. I have had that kind of fear before but not for many years and it troubled me as to why it had suddenly raised its ugly head again.

CBT taught me to analyse and explore my feelings so I spent the rest of the day trying to figure out what had caused this reaction. My husband had already told me during my call to him he felt it had been triggered by a mixture of tiredness and the fact that I so very rarely go out alone. Plus I was going out alone into a medical setting. Medical settings always trigger an element of fear but I can normally control it. The more I thought about it the more I had to agree with him.

For normal people going out by yourself is something you do without a backwards glance. Before I got sick I would go out regularly unaccompanied. I would drive to see my family and friends. I would pop into town to do some shopping. Leaving the house by myself was not an issue. Since 2008 I have very rarely left the house alone. It has almost become that my husband is now my safety blanket, or anyone else who is with me when I leave the house. I feel very vulnerable now when I am in the big wide world. Before I felt I could handle myself in any situation. Now the world is full of fear for me. Fear that I could pass out or fall whilst out in public. Fear of being abused because of my disability. Fear that if someone should physically attack me I wouldn't be able to fend them off. Things I rarely considered when I was well unless I was walking in an unlit car park late at night going back to my car.

It is not my fear that stops me leaving the house it is my physical disability. I need a wheelchair if there is going to be any walking involved or if there will only be a tiny bit of walking involved I can get away with crutches. Crutches come with a price though as my shoulders, elbows and collar bones complain for days on end afterwards. So with my limited mobility I always need someone with me. Someone to push my wheelchair or someone to drive me right to the door of wherever we are going.

Going out accompanied I never have any fear. I don't feel vulnerable or fragile or less of a human being. Alone I feel all of those things.

In the last few weeks I have been out of the house more times than I have been in months. I was ok the first time I went out alone but I just couldn't do it Friday. I am angry with myself for being such a coward and giving into my fear. I am annoyed that I didnt put my CBT into practice and try and rationalise the fear. 

The problem is CBT only really works if you know what specifically it is that you are afraid of. That way you can explore the issue, rationalise your fear, work out "well what's the worst thing that could happen?", how you could prevent the worst thing from happening and how realistic it is for it to actually take place. When the fear is unspecified you don't know what the worst thing is. There was no voice in my head telling me what I was afraid of. I just knew I didnt want to leave the house and the thought of it was making me anxious to the point of being tearful.

Sometimes I really don't appreciate all that I have been through since getting sick. I dont give myself enough credit for achieving the things I have. I am determined not to let this little set back make it impossible for me to leave the house again. I will go out alone again just not for a little while whilst I work through what the possible triggers were and why the fear was so all consuming.

I just need a little time to build my confidence back up and move on from the events of Friday.

Thursday 14 August 2014

My latest obsession

For those of you who follow my blog or maybe just read about my B12 deficiency, you will have read my confession that I am currently addicted to the television programme Scandal. I only started watching it a little over a week ago and I have managed to watch both Season 1 and 2. Thank goodness Season 3 started airing in the UK (Thursday 31st July ).

Its not just the plot lines that I love to follow or that Shonda Rhimes is a tv genius. I am a massive fan of Grey's Anatomy as well. Its just I seem to have developed an obsession with Kerry Washington's wardrobe and makeup. Lyn Paolo who style's Miss Washington for the show, can work for me anytime I win the lottery and I doubt even then I would ever be able to afford her skills.

Olivia Pope, (the character Kerry plays if you haven't seen the show) looks flawless at all times. Lounging around in her apartment drinking wine and eating popcorn she wears silk lounge pants with co-ordinating camisole vest and cashmere hoody / hooded cardigan. The closest I get to that kind of perfection on a lounging about the house on a day like today is a pair of battered old yoga pants and a fraying t-shirt that I will not throw away because it is too comfortable.

A visit to see the President of the United states she is dressed in gorgeous 3/4 length sleeve coats, perfectly tailored trousers and co-ordinated jackets. Olivia Pope is not high fashion she is old school fashion, she is stylish, demure and classy. She wears the kind of outfits I can only drool over while I watch her on the TV screen.

My obsession with what Kerry Washington wears whilst acting in Scandal is getting a little strange. I have never seen someone dress so perfectly and not one outfit where I have wanted to shout at the TV screen "what are you wearing?" Its just bizarre. Its not a girl crush I am just in awe at the beautiful wardrobe. The understated makeup, the perfectly manicured fingernails, the confidence, the beauty. Ok I admit it does sound like I have a crush on her.

It is the kind of style and fashion I can only aspire to. Nothing in my wardrobe would come even close to the effortless elegance played out before me. Its quite gutting really. Olivia Popes wardrobe is mainly from Max Mara and Dior but plenty of other fabulous designers have also been featured such as McQueen and Prada.

I have always liked fashion as a teenager. I never wore the "in" thing, I knew the "in" thing that all my friends were wearing was at least one season behind, the designers runway shows. You could say I never played the high street fashion game.

In my family you wore things that were practical and that would last. When you buy items that are practical and will last it means you choose carefully. You don't pick what is in fashion now because in three months your contemporaries will be wearing the next "hot" thing. I bought things that would last and would form part of my wardrobe for not months but years.

I never had the budget for clothes afforded to the cast of Scandal but I bought wisely. I never bought cheap clothes that would form part of my year round wardrobe. I bought cheap t-shirts but not so cheap that they were see through or not wash well, cheap jeans as long as the cut was flattering for my figure and the occasional cheap item that I just couldn't resist. I liked my fashion to be classic not frumpy and definitely not fussy. 

My signature was funky shoes. I was never really one for high heels unless you could guarantee that at some point in the day / evening I would be able to sit down. High heeled shoes have always been absolute torture to me. So I liked my funky shoes that were the complete opposite of what everyone else was wearing.

My fashion bible at the time was a book called "More Dash Than Cash" which gave great advice to anyone who wanted to appear they had money / dress well with just a few key pieces in their wardrobe. I had vogue on subscription and I would often top up my high end fashion fix with Harpers and Tatler. 

I grew up during the age of the supermodels. These girls were thin but didnt look anorexic, they had curves and boobs unlike the waifs that followed after them. I think my obsession with fashion started to wane when heroin chic took over. The girls were just so impossibly thin, Cindy, Naomi, Christy, Linda and Claudia were almost attainable. The waifs were just a step too far.

My flirtation with fashion ended when life was too busy for me to care too much. Even though I let my shoe and clothes obsession go, I never left the house looking anything less than perfect. My hair was always freshly washed and I wore a full face of makeup even during the summer months if I was stepping outside the house. A far cry from what passes as presentable these days.

I still appreciate good fashion / style, so I sit in anticipation of what Olivia Pope will be wearing next. I can only dream of having a life like that or a wardrobe that gorgeous. Most of my days are spent deciding whether I will shower or get dressed or if I am being adventurous maybe both.

Somewhere in this journey I just stopped caring about what people thought of how I looked and started being comfortable. Three dogs and black wool trousers, hell black anything just doesn't go, unless you like the dog hair look. I don't wear white because you can guarantee before leaving the house I will have spilt something down myself or a muddy / dirty dog will have jumped up on me.

Its been so long since I have worn makeup on a regular basis that the feel of it on my skin is alien to me. Comfort is my main priority these days and if I'm not comfortable I don't wear it.

My skin has changed considerably since getting sick. My skin was sensitive before but now its uber sensitive. I have to stick with brands I know won't cause allergic reactions that will take days to subside. My skin has always been dry but its much worse now. Where as I could get away with moisturising once possibly twice a day it now needs regular attention. If I am planning to wear makeup my skin takes days to prepare because makeup dries it out so badly. I can't wear any makeup with added moisture in because my face just looks like an oil slick after a few hours. You can see why I rarely bother it's just not fun anymore.

Clothes are now boringly practical, easy to wash and take care of. They also need to be easy to take on and off. My main item of clothing is jeans whatever the season. Jeans and a jumper, jeans and a t-shirt its easy, practical and hardwearing. There is nothing classic or elegant about my wardrobe. Another mainstay are my yoga pants. I own one skirt and one dress. I don't do dresses or skirts I never really have. I wore them a lot  in the early 1990's when I was told I looked like a plain clothes police officer. Then after that I ditched the whole skirt thing as plain clothes police officer was not the look I was going for. I would say my look now is probably slob at worst barely put together at best.

So Scandal fills that void in my life. To be able to adore the clothes and not having the hassle of trying to put the look together myself. It works for me.

Not my favourite looks but some great examples of the wardrobe

How sad I found a website that shows every one of her looks in Scandal! From slide 62 onwards are some of my favourite looks

Some of the "cheaper" pieces of Max Mara! I maybe at a push could afford a jumper! The coats are things of beauty. 

Monday 11 August 2014

My Guest Blog Spot

A week or so ago I was browsing through some blogs as I tend to do once or twice a week and came across lifeinslowmotion a blog on the Wordpress blogging platform.

As I was reading the bloggers post the author asked if any of her readers wanted to contribute a post for a guest blog spot. As I have never done a guest blog spot before this immediately appealed to me. I got in contact with the blog's author and threw my hat into the ring.

The lady who runs the blog and I emailed back and forth so that I could get the word count, tone of the piece etc sorted. As you know my blog posts can be long affairs so when she set the limit at 1,000 I panicked and said I may struggle. Thankfully she upped the final count to 1,500 words and I happily came in well under that with a word count just above 1,200.

Writing a guest blog post is a nerve wracking experience which I had never truly appreciated before. Running your own blog is fun, you make all the decisions. I have never handed over editorial control to anyone and those of you who know me personally know what a complete control freak I can be about everything!

When Bee agreed to be my guest blogger a few weeks ago, I am sure I didnt understand the pressure she was under. I also felt pressure in not attempting to change what she had written beyond recognition and therefore rendering her voice mute. Each writer has their own style and flow. I felt when "tweaking" Bee's post (and it was tweaked very, very lightly) that all I should do was allow it to flow and just break up the big paragraphs into smaller ones. I have learnt the hard way and through personal experience fellow bloggers / readers do not want to be confronted with huge chunks of prose.

I have published a few paragraphs of the guest blog post which was published on Friday 8th August

"Every time you find humour in a difficult situation, you win"

I found this quote on twitter a few weeks ago and have been searching for the author of it because I think these are words to live by. I have had my dark times when my illness has made me feel very low but I have never lost my sense of humour.

I have always had a dark / dry sense of humour and since being struck down by a chronic illness in 2007, it has been this sense of humour that has got me through. Obviously with the support of friends and family.

Outsiders have always perceived me to be a negative / pessimistic person however I would call myself a realist. If I know what the worst case scenario is I can prepare myself should it come to pass. With my illness dysautonomia, (a name which covers a multitude of sins)  seeming to be progressing, affecting more parts of my autonomic nervous system, no one has raised the subject  that this may actually kill me. The truth  is no one knows how the dance (thats what I call my illness for I am forever dancing to its tune!) will pan out. So I am left wondering what happens next?

To read the rest of the post please go to Life in slow motion

Thursday 7 August 2014

Cyber bullying - its not just a young person's game

When people talk about bullying the majority of us automatically think of schoolyard abuse / scuffles but with the explosion of the internet over the last few years bullying has taken on a whole new form.

I suffered at the hands of bullies as a child so it is something I feel strongly about. It seems that now bullying is so much easier with the internet and the explosion of social networking sites. If you call someone out on their behaviour more often than not they will claim they were only joking, that you shouldn't take things so seriously. I have to ask the question would they be so brave to speak to you like that in real life? I would hazard a guess probably not.

Bullies can now get away with complete anonymity, if clever enough - some are quite dumb using their real names on open profiles! The assassination of your character can take place with a few strokes of the keyboard by people who dont know you. 

Its not just confined to young people anymore, bullying seems to be on the rise. Just look at any celebrities twitter stream, the abuse is rampant. Pop your head above the parapet, stick up for what you believe in and you will find yourself in the trolls crosshairs.  As I found out when I dared to complain about the waiting time for spinal surgery at the hospital my mother attends.

I am a 40 year old woman not a child and I have found some peoples behaviour online deeply offensive and upsetting. Unfortunately that was the person's sole aim. What I really dislike are the passive aggressive trollers who lurk on your contacts list whose main purpose in life is to bring you down. They don't last long on any of my accounts. 

I don't delete without warning unless I have been really annoyed and several private chats have been ignored. I give far too many chances to people who really don't deserve them and end up being drawn into the vicious cycle of niceness, followed by putting the boot in.

 I am endeavouring to get my head around the fact why some people feel the need to turn into nasty keyboard warriors. I am all for a good debate but too easily online it can turn into a bitchfest at best and outright threatening behavior at worst. I have been quite lucky so far although I have sometime been shocked at the sheer vitriol spewed by some towards me, I have never felt personally threatened. 

I also struggle to understand why such nastiness gains such support amongst other people who seem to engage in a herd mentality picking someone off on the "facts" provided by one person. Who does that and why? It seems independent thought is something only a few people possess these days.

The saddest thing of all is it seems to be grown woman who seem to indulge in this pastime more than anyone else. In an age where women have advanced in the world reaching new heights in business and education, there seem to be some women who enjoy nothing more than tearing other women down. What drives these people to attack others jealousy, insecurity? I dont believe that anyone is born nasty its something they develop due to their environment. In all honesty I feel terribly sad for them.

People seem to be very quick to jump on the bandwagon without stepping back first and assessing all the facts. If you didn't witness the event and have no evidence to prove what someone is saying, then shouldnt it be taken with a pinch of salt? Individuals seem to throw caution to the wind with the statements they make online, that can never be retracted.

Its very difficult to hide from an online bully, you block them from all your online profiles and they set up multiple accounts to catch you out and post abuse. I am tired of the cat and mouse aspect of it all. I see multiple accounts as almost an indication of a multiple personality. 

I am not alone in facing abuse online, friends of mine have been hounded off social media by people they considered "friends" or contemporaries simply because their views did not fit in with how the other person sees the world. I have been deleted and blocked by people simply because of my political beliefs. I have had the same treatment because I am friends with people the other person doesn't like. Surely the question is "wouldn't it be a boring old world if we all held the same beliefs and opinions?"

It also falls into the realm of censorship, you stop posting / tweeting things because you are scared of the reaction it will provoke. I am all for free speech as long as it does not incite hatred towards other individuals or groups. However I have noticed myself hesitating from posting about my illness on my main facebook page due to negative messages I have received. I now keep my "moaning" (as it was described by someone I considered a dear friend) to my Myasthenia Kid page because the people that follow that really want to know how I am doing. 

I do believe its wrong to feel the need to sanitise what you want to post / tweet just because of a few individuals. I am not alone in this I have had friends attacked for posting about a bereavement, having cancer or simply wanting to express their honest opinions about a subject close to their hearts. There are still subjects that I censor myself on why? If its my page / account why do I have to be afraid if its something I believe in?

It seems to me that the internet has encouraged those who seek power by destroying others. It is as if we haven't evolved from the playground at all. If this is how adults act towards each other what example are we setting for the next generation?

Monday 4 August 2014

B12 deficiency

I visited my gp on Wednesday 30th July at his surgery. Those of you who are new to this blog will probably think that its not a big deal. For me its a huge deal. Most of my conversations with my gp are held over the phone because visiting his practice is just too stressful and exhausting.

Due to my previous medical care (or lack of) I have been left with a fear of medical staff. I wouldn't class it as a phobia as its not so extreme that I will not go, its just things have got to be pretty bad for me before I will consider a visit.

The night before even a routine blood test will be spent sleeplessly. I have to rehearse every aspect of any topic of conversation that may crop up. I have to be prepared because without being prepared there is a lack of control. 

My gp is lovely, my hospital consultant is lovely but a visit to either of them fills me with dread. You see I used to have a lovely neurologist until he decided that I didn't have myasthenia gravis but instead had psychological issues. This then coloured every interaction I had with medical personnel, who suddenly became very cold and uncaring. I now fear that at a moments notice this could happen all over again.

Without my gp and my consultant I would have no one in the medical world that will fight my corner and actually believe my diagnosis. Even though I have the tests to prove I have severe autonomic nervous system dysfunction, I am yet to find a doctor outside of my consultant and gp that actually believes this diagnosis. They believe that I have Ehlers Danlos syndrome hypermobility type but dysautonomia seems a step too far outside what they learnt at medical school.

 Wednesday was a tough day. I needed to speak to my gp about the fact that my back pain has ramped up to such an extent that I get no relief from it other than sleep and even then it will wake me up.

To prepare for my appointment I downloaded and printed off outline drawings of the human body ( you can find the ones I used here ). I printed off two copies so that I could colour in where the pain is on a good day and where I feel it on a bad day. That way I guessed I wouldn't have to strip off. I did wear matching underwear, which my friend Ellie always reminds me, that in a film that means you are going to be the one bumped off. No one who gets murdered in a film seems to be wearing greying, saggy knickers and bras? I dont know why its not very true to life. 

I digress, so my pictures were prepared a week in advance. Under each picture I also wrote a short summary of what the pain was like on each area of the body plus any extra information I felt was pertinent. That way if my mind went blank I could refer to the information I had on the sheet.

As my husband wasnt coming with me I was having to make it to the surgery under my own steam. I was going to book a taxi however some good friends stepped in and offered me a list there and back. I was however going to have to use my crutches instead of my wheelchair as I can't self propel. Which is probably why I am in agony with my shoulders and collar bones today.

It didnt go well in the waiting room as I had a funny turn and ended up having to rest my head against the wall of the waiting room as I couldn't put my head between my legs without drawing attention to myself. I know its stupid but I dont want to cause a fuss. I leaned myself up against the wall (whilst sitting) and closed my eyes waiting for the room to stop spinning. I also felt like I was going to vomit so I focused on my breathing. When my gp called my name he took one look at me and asked me if I wanted him to go and get the wheelchair. Again not wanting to cause a fuss I said no and just told him to wait for me to get up. He was insistent that I was very, very slow on getting to my feet and he never went further than catching distance in front of me.

The usual pleasantries were exchanged and then he started going through my latest blood test results. The good news is I am not diabetic which had been a fear of my gp's due to the pretty much constant bouts of cellulitis I have suffered. My kidneys and liver are working well. He then told me my B12 results were 178. As I was in the process of recovering from a turn, it took a few seconds for that to sink in. You see I have been telling any doctor that will listen since January that my B12 levels were low. Everytime my B12 levels drop I get pins and needles in my hands, I lose sensation in my hands and have problems telling hot from cold and dry from wet. 

As I am pretty hot on the problems B12 deficiency can cause and pernicious anemia seems to run on my paternal side, I knew 178 was not a good number. However doctor training on B12 is pretty poor in most countries around the world. Doctors will accept that not enough vitamin D and you will get rickets, not enough vitamin C and you will get scurvy but they will not accept that low levels of vitamin B12 will wreak havoc on your entire body. For more info please use this link , which is a great website for information regarding both conditions.

Had I been well enough to stand and fight my corner yesterday, as it appears my gp is unfortunately not fully aware of the implications of a B12 deficiency, I would of. I did however in my muddled state manage to tell him I had neurological symptoms. He didn't agree and said that it was due to my poor circulation. After a small discussion, he suggested that he would give me an injection of B12 as an experiment to see what it did. I knew that one B12 shot would make very little difference and I actually needed an injection of B12 every other day until there is no further improvement for patients with neurological involvement eg me and then injections every 2-3 months (NICE guidelines). So as I am providing this blog posts with these links I am simultaneously printing off the information for my gp. 

Please remember a gp is like the jack of all trades, he or she is supposed to know a little about everything and they are only human. Sometimes things will pass them by. Hence why I am not cross with my gp nor disappointed, I will provide him with the information to update him. Should he choose not to use it or to actually give me the correct loading dose of B12 then I will be extremely angry.

I have been shocked by my response to the B12 injection, thinking it could be days or months before I would see any results. The first thing I have noticed this morning is that there has been a massive reduction in the nerve pain in my leg. Its the most comfortable its been since before April 2014. I also woke up this morning feeling refreshed its been years since that happened. For me its too early to say it was the B12 that did it but I am curious to see what tomorrow brings! My gp asked me to ring him if I had any improvements in a few days.

My main reason for my visit was my back however there was the little issue of my syringes to discuss. I dont think that I have mentioned that ever since I have been placed on the drug octreotide, there has not been an issue obtaining the drug but a major issue obtaining the method of delivery. The hospital gave me an ample supply of needles and syringes when I was discharged but by May that supply was running out. This is where the problems started.

The community pharmacy list does not allow for syringes of this size to be issued, its not contained within their list. So unless I was prepared to pay for them my gp was not going to be able to issue them. This lead to many phone calls to the prescribing team and the hospital to try and get this issue resolved. 

All that happened was that it turned into a massive blame game the hospital blaming the gp surgery and vice versa. That left me playing piggy in the middle and I was still without the needles and syringes to be able to use the octreotide. In the end I got an emergency supply of both the needles and syringes from my doctors surgery on several occasions. Eventually needles were prescribed, 400 of them (200 for drawing up and 200 for injecting) but no syringes were forthcoming. That was fine whilst I wasn't injecting due to the cellulitis but as I started using the octreotide again last week I was going to be out of syringes by today (Monday 4th August).

When I told my gp that the syringe situation had still not been sorted I thought he was going to combust! He had no idea there was still a problem but he sorted it immediately. As the hospital would not issue me a prescription for the syringes so I could acquire them from the hospital pharmacy my gp took matters into his own hands and gave me a box of syringes from the practice. The practice can order them for their use but they can not be ordered for patients. A completely ridiculous and kafkaesque situation but there you have it. Now in 3 months all I have to do is ring up and ask for a box of syringes! Why its taken from April to July to sort out is beyond me.

* * *

I started writing this post on Thursday 31st July, I felt like a different person from just one B12 shot. I felt so good I rang my doctors surgery to tell him of the improvement. Later on that evening he rang me to say he now wanted to start me on B12 injections every other day for a week or so. Not exactly the NICE guidelines but it was a start.

That evening on the advice of a good friend in the USA who has suffered permanent damage to her nervous system due to B12 Deficiency I ordered some B12 lozenges from a well known internet site. They would be delivered the following day. 

On Friday I woke up and felt dreadful, I had slept better but I felt like death. The pain in my leg was back and worse than ever. I felt so deflated, had my reaction to the B12 injection just been a fluke? I know what I am telling you is just anecdotal evidence however I am not advertising anything, I am not being paid by anyone, I am not even telling you the brand of B12 or the site I obtained it from. I can only tell you my experience.

Once my B12 arrived on Friday I took the dose my American friend had suggested as a loading dose. Too much B12 is not harmful and my B12 is low, my stores are depleted. I noticed no difference Friday even after taking the dose, all I felt was washed out, tired and disappointed.

Today Saturday morning after two doses of the lozenges my leg pain has gone. When I say my leg pain is gone I mean the horrible screaming unrelenting nerve pain I have had for months and does not respond to medication. I still have an ache / throb in my thigh and down my leg but its like the volume has been muted. I slept deeply last night, I felt like I had actually slept. I haven't had that feeling for 7 years. The only thing that is different in my life is enormous doses of B12 and the fact I have just started watching Scandal. I dont think its Scandal, as good as it is, that has reduced my leg pain.

I am still exhausted and feel like I could sleep for months but then I have been suffering with sleep deprivation for years. The damage done to my system because of the low B12 will take months to repair. My gp has already confirmed this. He has also warned me some of the damage may be permanent. However he has told me that I will be having B12 injections every 2-3 months for the rest of my life after this loading dose.

I hope that my response to the single B12 injection has changed my doctors mind. He believed that there would be no neurological symptoms at a level of 178. Despite the BMJ Best Practice recommendations, The British Society of Haematologists report, the NICE guidelines and the fact my B12 results had come back from the lab in a red box. He gave me the B12 shot as an experiment. Look at the results! 

I hope that my reaction to a B12 injection has changed his mind.

I would like to point out the B12 lozenges will not replace the B12 injections that I am having on alternate days. I am using the lozenges to get rid of the pain in my left leg as because the surgery doesn't open at the weekends I have to wait from the Friday to the Monday to receive my injection. If your doctor says you need B12 injections do not think you can use B12 lozenges to replace them.

If you suspect you are suffering from a B12 deficiency this will advise you on the next step