The Response to “Dear Norms”

My blog post Dear Norms (WordPress version here) produced a response on my blog, my The Myasthenia Kid page on Facebook, my own personal Facebook page and the comments section of both blog platforms that I could only dream about.

Although it was fantastic to receive such a response my heart was heavy reading other people’s experiences of being abused by “Norms” due to their disability. I have been very lucky to have suffered very few incidences of abuse. One of which I wrote about – Well if you’re that f**king disabled get off Facebook and take up knitting (WordPress version here). The abuse I received via social network when what had been a friendly discussion got out of control, upset me for days afterwards. I now know I had simply been trolled by someone who would not accept I had a different viewpoint from her. When she realised I couldn’t be bullied into changing my opinion she launched her vicious tirade culminating in “well if you are that f**king disabled get off Facebook and take up knitting”. 

It made my anxiety about leaving the house much worse. I do not suffer with agoraphobia but the open hostility with which the disabled are met on a daily basis, causes me anxiety if I need to leave the house for appointments etc. Due to my chronic conditions making me virtually housebound, leaving the house is a big deal. I know that it will have consequences for my health, normally a rapid deterioration. Add in the highly likely scenario of facing some sort of abuse and or discrimination, leaving the house can have self-esteem / confidence implications as well.

One response came from my sister Lucy ( who I am hoping will be a guest blogger in the next few weeks ). She also suffers from Ehlers Danlos Syndrome Hypermobility type and Dysautonomia along with other conditions she has picked up along the way. 

My sister has faced an enormous amount of hostility regarding her illness from day one. My sister was a medical conundrum back in the early 1990’s at age 14. It was just at the time that Yuppie Flu so helpfully named by the media was coming into the fore. What the papers failed to realise or accept was that the so-called Yuppie Flu was in fact a real medical illness Myalgic Encephalomyelitis or M.E for short. 

My sister was accused of faking her illness, having school phobia and medical staff tried to blame my parents for her condition implying they were both suffering from Munchausen Syndrome By Proxy. Eventually the diagnosis was settled on she had M.E or Chronic Fatigue Syndrome, which it is also unhelpfully known as. M.E and Chronic Fatigue Syndrome has about as much in common as football and Ice Hockey but I digress as usual. She was diagnosed with Ehlers Danlos Syndrome and Dysautonomia shortly after I received my diagnosis in 2011.

My sister was so ill as a child (and still is) that she needed a wheelchair both indoors and out. For two years she was confined to her bed and suffered from epileptic like seizures. These were explained away by the medical profession as psychogenic seizures, the implication being that she was putting them on. It is believed to be some form of somatoform disorder / conversion disorder. (Isn’t it funny how we have both been told that we have a psychogenic illness?) If that was the case she should have received an academy award. The medical profession may have decided she wasn’t worth their time or effort but our family GP who worked tirelessly to try to help her. She did find as a young person in a wheelchair she was accepted on the whole by society. How things have changed.

On reading my post “Dear Norms” she was compelled to comment and this is what she said;

When we took my son to the out of hours doctors recently the first thing the doctor said was, “Is that your wheelchair?” I am so f**king sick of people in the medical profession asking me that question, especially when I am not even the bloody patient.That’s like me asking an abled bodied person if that’s their legs or a transplant donors! I feel like saying, ” No. I’m just a huge fan of Little Britain and I carry car bumper stickers with me all the time so I can pimp up other folks wheelchairs.” It’s beyond stupid, yet I come under the category of “Disabled!!!” 

 I was so shocked by what Lucy said I couldn’t come up with the words to explain the outrage I felt. On talking with her she told me it happens at every medical appointment she attends with a new doctor, whether she is the patient or her son/husband is. I am left scratching my head as to what the medical relevance is to the question “is that your wheelchair?” Especially when Lucy’s five-year old son is the patient.

I regularly get the question “Can you walk?” when meeting doctors whilst using my wheelchair. I understand they want to gauge what my mobility levels are but it is a highly offensive question when again it’s not medically relevant, such as when my bladder was in spasm and I was in acute urinary retention. The explanation from doctors would be that they are trying to assess what help I will need whilst in their care. The question is so loaded that I feel that every time I answer it I am being forced to justify my using a wheelchair.

For clarification I use my wheelchair for many reasons. The first is for safety I can be incredibly unsteady on my feet causing me to fall on numerous occasions daily. I can lose my balance stood still that’s how bad my balance issues are. Another reason is that walking causes me intense pain due to the Ehlers Danlos syndrome, knees give way or dislocate, hips have a tendency to pop out more than I do and don’t get me started on the mess that is my spine. My wheelchair is also used because of my Dysautonomia, my blood pressure can drop like a stone and when that happens I tend to as well. It happens without warning. Also being upright causes my heart to beat rapidly (130bpm) and this is exhausting. Yet my explanations are met with a wry sarcastic smile, it’s as if my conditions are disbelieved. The wheelchair is obviously just for show, I am a lazy cow who doesn’t like to walk anywhere. I mean wheelchair access is just so great nothing stops me……apart from stairs, escalators, badly designed kerbs etc.

Another person commented that her ex partner had used the word “spaz”, “mong”, “retard” as a term of abuse whilst they were in a relationship. Her children are also disabled so the ex wasn’t just abusing her but her children also. This made her see red and she smacked him in the puss – her words not mine. I don’t condone violence but when backed into a corner it can be a natural reaction.

A long time friend of mine whose comments you can see on my WordPress blog described being spat at and told to get out of his wheelchair and get a job. As he says the people who did this to him, don’t know him from Adam and they fail to realise he has worked for 40 years. Unfortunately all people see is his mode of transport, a wheelchair. The chair has become in their eyes his identity and he is reduced to being a leech on society, sub-human. This man, this friend of mine who served his country, was injured in the line of duty. Is this really the way we are going to treat wounded ex-servicemen? It makes me so angry that intelligent human beings are being degraded in this way by people who consider themselves normal.

I don’t believe that you can be what most people consider “normal” to treat another human being in this way. I am so angry but I have used up my profanity allowance for the day that I can not find the words to express how I feel. 

It seems “Dear Norms” stirred up a lot of feelings for many people. It exposed me to some truly shocking and horrific personal stories. I just wish the people I was addressing in that post would realise the horrific damage they are doing by using those words and holding those attitudes. As a society we will never evolve if the disabled are seen as a drain on the country’s finances and not as human beings who have something to offer the world.

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For those of you who may have missed this I have been nominated for a WEGO Health Activist Best in Show blogging award! This is a huge deal. I need your help though. Please could you follow this link which will take you to my nominee page. All you have to do is hit the purple endorse button and leave your name and email address. Both your name and email address will stay hidden, so I won’t know who you are or will anyone else. I need as many endorsements as possible to help my blog go through to the final stage.

This is a huge honour and the stuff of dreams for me. I have had this on my wish list for the last year or so and I am finding it very surreal that I have received a nomination. Thank you to everyone who has endorsed my blog so far You Are Awesome!


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.