Non-Compliance

Every so often in a moment of sheer madness I decide that I can do without some of my medication. My repeat prescription list could get mistaken for a pharmacy stock list, such is the length. It is embarrassing especially when you have to go through it with a new health care professional. You can see the expression on their faces and you know immediately that they believe that you are over medicated. The simple truth is it has taken years for me to get my medications right and to stop any one of them leads to dire consequences.

Last year - which was the last time I made the decision to cut down on my medications, is a prime example. My husband and I were attending a wedding at the end of August. I had lost a lot of weight around 21 lbs and was feeling good about the way I looked for the first time in a long time. The dress I had bought for the wedding now needed to be professionally altered because it was too big. I decided that 21 lbs just wasn't enough weight off and knew that if I stopped taking my salt tablets I would drop as much as another 7 lbs.

I was put on salt tablets a few years ago. I am one of the lucky ones whose stomach can tolerate them. Salt tablets have been marvellous and out of all my many medications they are the ones that actually have stopped me fainting all the time (combined with a progesterone only contraceptive pill). Before I was placed on the salt tablets I was fainting daily and having moments of a complete blackout and then coming too seconds before hitting the floor. I would faint standing up, sitting down and even lying down before I started the salt tablets.

The only problem with the salt tablets was that I was retaining fluid (which they are designed to do, to increase blood volume). My fingers became like chipolata sausages and my ankles were puffy. It wasn't uncomfortable and there was no medical reason why I should stop taking them but I did. Weight wise the results of stopping taking the tablets wasn't immediate it took a few days for all that retained fluid to drain away. I dropped around 4 or 5 lbs and was elated. However after a week without the salt tablets, I was beginning to feel the effects of no longer taking them.

On waking up I was no longer able to sit up straight away without feeling hideously dizzy. I was feeling faint every time I stood up. My postural orthostatic tachycardia symptoms went nuts. I had a few mini faints and on one occasion managed to pass out as I left the shower cubicle cracking my head on the wall opposite. After two weeks of constantly feeling like I was going to faint I had to concede I did need to take the salt tablets and to hell with the water retention and weight gained.

I am, I like to think a sensible person so why on earth did I take this gamble with my health just to drop a few pounds for a wedding? I am extremely lucky that I didn't seriously injure myself and end up missing the wedding completely. On talking to others who take many medications to control their  various conditions I am not alone in deciding without medical advice to just stop taking a vital medication. 

When you are chronically sick the medication you take on a daily basis can seem like a lot of pills to an outsider. Friends, family and even medical staff have sometimes questioned the sheer volume of medications that I take. I have managed to reduce the amount of medicine I take as at one point I was taking as many pills and potions to combat side effects as I was medication. The medications I take now have been found to work for me through sheer trial and error. Take one medication out of the mix and its like a house of cards, it all falls down. 

However some medical professionals like to think within minutes of meeting you that they know better than the doctors that have been treating you for years. Your prescribed medication list is gone over with a fine tooth comb. Every medication must be justified by you. I have left appointments with locum gp's feeling like a hypochondriac. I have had nurses tell me they don't have enough space in the bedside locker for all my pills. The pills that I have been good enough to bring in myself from home so that they don't have to spend half the day at the pharmacy. Why is it the very professionals that dish out the prescriptions are so very averse to their patients actually taking it? it makes no sense.

Patient compliance with medication regimes varies wildly. It is a subject on which vast amounts of money has been spent on researching the issues around it. Whilst carrying out some additional research for this blog post I came across this article on medscape which goes into a great deal of depth about the barriers to patient adherence as they now like to call it rather than compliance. I was shocked to find out how many prescriptions were not even being filled as I had presumed the issue would start after the patient had the medication in their hands. 

Those patients prescribed a long-term drug therapy seem to have a much lower level of adherence than those prescribed a short course of treatment such as antibiotics. So those of us with long-term health conditions that need to take medication on a daily basis seem to be among the worst to actually "comply" with the treatment regime. For more information see this article Factors affecting therapeutic compliance. I wonder what the factors are that create this situation? Is it the sheer number of medications that need to be taken? Is it financial if you have to pay for medications? Is it the side effects from taking the medication that causes people to be non-compliant? My non-compliance was sheer vanity and I know I am not alone with that. I have spoken over the years with patients who have reduced the amount of steroids they take due to the amount of weight they gain through the medication. It seems they are prepared for all other side effects but the mental distress a change in their physical appearance causes due to illness is a bridge too far.

In 2008 I was prescribed steroids and although I was briefly told about the side effects of weight gain and a "moon face" it was made clear to me that those things were minor compared with the health benefits I would gain from taking them. within a few days of taking the steroids I had much more energy than I had, had for a long time. I managed to walk which I had been unable to do for five days. I really felt that my treatment was finally yielding results. Mindful of the fact that they could increase my weight I was careful with what I ate and despite the continual hunger I felt I managed to maintain my weight.

A few weeks after being on steroids I noticed the shape of my face had changed. I was developing a"moonface" or hamster cheeks as my husband and I called it. Despite the fact I hadn't gained any weight, the change in my face shape made me look like I had gained several stone. I coped with this until I visited my old work place. I was very self conscious because it was the first time any of them would have seen me in a wheelchair. The visit went ok but a few days later I was chatting to a someone about the visit and how self conscious I was about the wheelchair when they replied "oh they weren't bothered by the wheelchair, all they talked about was all the weight you have put on."

That one sentence crushed me. I don't think the person deliberately set out to hurt me, it was more a case of speaking before their brain had engaged. To tell you the truth I don't even remember who said it. All I can remember thinking was "but I haven't put any weight on!" Such was the impact of the steroids on the shape of my face it had given the impression I had gained weight. When you are already suffering from ptosis and your face is drooping a comment like that can hit you hard. It could have been very easy for me to stop taking the steroids as they were responsible. I didn't but I made the mistake of giving into the constant hunger the steroids had induced and 9 months later I had gained 70lbs. My mindset was well if you all "see" me as having gained weight when I haven't then what's the f$$king point of not giving in and admitting defeat?

In 2009 I was slowly weaned off the steroids as they were no longer providing any improvement in my condition. As I did so my weight dropped by 42 lbs, those last 28 being really stubborn to shift. I wish that someone had sat me down and explained the side effects of steroids to me in a way I could understand. A leaflet in a medication box doesn't really mean anything until you are living with the side effects. With a medication like steroids how many people balloon like I did due to giving into the hunger and then develop serious complications due to the weight gain such as diabetes or heart disease? I was very lucky and had no weight gain induced complications. I have been left with a very flabby belly that is impossible to shift and steroid induced stretch marks (another side effect that is casually glossed over).

How many patients are truly informed about the possible side effects of the prescribed medication before taking it either by the Doctor or at the pharmacy? Could some of the non-compliance issues be resolved if there was an open discussion between Practitioner and Patient? Could greater compliance be achieved if the Doctor's would be more willing to listen to their patients when they report side effects. How many of us are told that the side effects should subside in a few days, weeks or months?

Clearly the issue of non-compliance / adherence is multifaceted and there is no one solution to this issue. After all the medical profession has been conducting research into this area since the 1970's and the percentage of those patients who fail to adhere to their medication regime has not reduced. The issues surrounding a patients decision not to comply with their treatment regime is a personal one and needs a proper investigation.

My doctors never found out about my salt tablet debacle, I have never told anyone that this happened (sorry mum / hubby). It was a valuable lesson for me about how much I needed that medication. I can't promise in the future with a different medication that it wouldn't happen again.

Misconceptions

Some times blog posts are triggered by life events other times they are triggered by something I have read. Today's blog post was inspired by an article that was shared online by one of my friends from Psychology Today "Six common misconceptions about the chronically ill" by Toni Bernhard J.D. I have faced all of them at some time or another. The article really got me thinking about the points the author raised and there were particular ones that really resonated with me.

As the author states one of the first misconceptions the chronically ill face is that we don't all look sick. I have had people say to me "you are looking really well", when I know that when I last looked in the mirror I was doing an impersonation of Casper the friendly ghost. When I first got ill this really used to annoy the hell out of me. As time has progressed I have decided to not react to statements such as these, after all there have been occasions when my husband has said the exact same thing. I may have the energy to kill him but disposing of his body would be a real nuisance!

Many people don't "see" how sick I am. They don't realise the effort it has taken to get out of my bed let alone get dressed and washed. They weren't with me as I took a mountain of medication to ensure there was no breakthrough pain and lets face it unless you know someone really, really well (and although my husband does know me well, he doesn't always "see") it is usually only my mother that says to me "Oh you look awful, are you OK?". She can also tell in my voice when I ring her in the morning how I am doing and will keep questioning me until I admit I feel awful. She can see immediately if I am having a rotten day and I am dosed up to the eyeballs. So I can't really get mad at people when they say "You are looking well". It does irritate me but I have learnt I need to use my energy in more constructive ways.

What is hard about people saying that you look well is the inherent belief that if you look well you must be feeling well. A long time ago a lady, who worked for me and has since  sadly passed away, came in shopping whilst she was off work undergoing chemotherapy. Everyone was saying to her how well she looked. I could see she was finding this a little hard to deal with. I understood enough to know that chemo is no cake walk and I stopped to chat with her. As we stood and chatted another member of staff came up and said how well she looked. Sheila just smiled and said thank you. 

Once they were out of earshot she turned to me and said " I wish they realised I am puking my guts up for hours each day. It's the bloody chemo that's giving me a flushed face, that makes me look like I am OK and not dying". I held her arm and told her that it was just so lovely to see her and that we were all thinking of her. I had to hold back the tears when she told me she was losing her battle against the cancer that had returned for the 3rd time. The moral of the story is no matter how good you think someone looks when they are chronically sick, you have no idea what they are facing. Choose your words carefully.

The concept of radical resting or #3 on the authors list is not a new concept for me and it is often the one that is most misunderstood by others. A few years ago I was resting for an event that I was desperate to attend. I knew that attending this event would wipe me out physically and mentally for many weeks afterwards but it was something I really wanted to do. Unfortunately the event clashed with a friends 30th Birthday meal. The friendship had been on the wane for quite some time at this point and I knew that she wouldn't have thought about the disabled access at the restaurant and I would be sat with a group of people I didn't know. 

I had booked and paid for the event 4 months in advance, well before she had decided what she was doing for her birthday. The friend knew that I was going but couldn't understand why if I was resting that I wouldn't be able to attend her function on the following evening. She was of the opinion that if I could attend one that I could attend the other. After all I had been on strict bed rest for a month prior. I kept explaining over and over again but my explanations fell on deaf ears. I felt like I was being emotionally blackmailed as every few days leading up to her birthday meal she was sending out a text message to all that were invited to confirm their attendance so that she could book the restaurant. As I had already explained my position I didn't understand why I was still being included in the group text messages. It hurt me that she refused to accept that despite my radical resting I wouldn't magically be better.

When you are chronically sick spontaneous events rarely happen. Outings require such meticulous planning with resting, medications ordered, transport arranged and schedules cleared to allow for resting afterwards that spontaneity has to take a back seat. It irritates me that people assume that with a few hours in bed I am good to go, it doesn't work like that. I have rested for weeks before a planned event and still had to cancel at the last-minute. I don't decide whether my body is going to cooperate, it does. It is extremely frustrating to have rested and organised everything so that I can attend an event only to find on the day I am too sick. It makes me feel robbed, not only of the chance of going out but also all the time I have rested to end up achieving nothing. People assume I use my illness as a cop-out so I don't have to attend things I don't want to. It's true there are some events I won't go to but I will tell the person that has invited me, I don't use my illness in that way.

Point #4 from the article leads directly on from #3, the misconception that if a chronically sick person is enjoying themselves then they can't be that sick (or as the author says if they are enjoying themselves they must feel ok). The problem is when people see you either out at an event or at home entertaining they don't see the planning and resting before the event and they don't see the consequences after the event. All they see is you looking and acting "normal", they don't see you surreptitiously taking extra medications because the pain has kicked in or the hot water bottle discreetly placed in the waistband of your trousers to ease the muscles spasms. If you are chronically sick and anything like me you do all you can to avoid drawing attention to yourself.

We are then disbelieved when we try to explain our illness and the way it affects us because for one night they "saw" you acting and looking normal. It's frustrating that we are judged on the few hours we are visible in the outside world not the hours spent behind closed doors where we feel like we are slowly dying just through the intensity of the pain or the intensity of symptoms.

Back in June my husband and I held a "40 1/2 Birthday Party" so that I could socialise with people and catch up with life outside the house. What the attendees didn't know was that if the event hadn't been taking place in our home I would have cancelled the afternoon of the party as I felt so very ill. I soldiered on and enjoyed myself but was very ill for several weeks afterwards.

What I find especially hard to deal with is the judgement I get from within the chronically sick community. When others heard I had a party at my home I had comments made that "they were just too sick to do anything like that" the implication being I couldn't really be that sick if I had some friends over. This was from people who know nothing of what my life is like. They are unaware of that I have a chemical toilet downstairs because I can't manage the stairs more than a few times a day. Without the chemical toilet I would be stuck upstairs all day everyday as I need to use the loo so often. The fact that I limit the amount I walk around so that I don't use up too much energy or that I go to bed most afternoons because I can't cope with sitting up all day or the extra stimuli that being downstairs exposes me to. When you can't even enjoy yourself twice a year because of the judgements of others in the chronically sick community things have gone very wrong. They are the people who know what it is like to be judged by others but are quite happy to sit in judgement of me.

The last misconception the author talks about and the one that really struck a chord with me was "Being at home all day is a dream lifestyle". Years ago sat in the back of an ambulance a paramedic said to me "It must be great not having to go to work, get benefits and watch Jeremy Kyle all day". I was so shocked by this I didn't know what to say. I was also quite busy sucking on gas and air to try to get some relief from the abdominal pain I was experiencing. This statement came from a medical professional, someone who is supposed to look after the weakest and most vulnerable people when they are in need of emergency medical help. If that's how he views the disabled then what hope do we have?

People assume not working is some sort of life of luxury, masses of free time to indulge in whatever pursuits take your fancy. Most people don't stop working until they reach 65, I stopped working at age 34. When you are chronically sick there is no life of luxury or free time, most of your time is spent managing your condition and worrying about money. If I could have my health back I would be straight out to work. 

Being at home all day everyday is socially isolating. The friends you have at your job rapidly disappear because it becomes clear very quickly that other than the workplace you have very little in common and they have to make a physical effort to come and see you. Ask anyone who has been on maternity leave or on long-term sick leave how many people they have seen once they have been absent from the workplace and the majority will answer either no one or just staff from the Human Resources Department.

Not working either through "normal" retirement or chronic ill-health increases your risk of depression. No longer having a routine, a purpose or the sense of achievement you receive by being an active member of the workforce can lead to immense feelings of loss. I do miss my job, I miss the social interaction. There are obviously aspects I don't miss as anyone who is working will tell you there are aspects of their job role they really don't like.

When I left work I felt I had no purpose, that I contributed nothing to society. I still struggle with this every so often, usually when yet another medical professional has asked the dreaded question "Do you work?" I feel like I have to justify my existence being thrown on the scrap heap at 34 was hard to deal with. To cope with it I started blogging it has given me a routine and sense of purpose. 

No one would ever chose to be so sick that they couldn't work. Obviously some people stay at home to look after children and find it socially isolating, I do appreciate that. However they have the power to change their situation. When you are too sick to leave your bed let alone leave the house your options are limited.

Not having to work because you have won the lottery is a luxury, retiring early because you are wealthy is a luxury. Having to leave work because you can no longer perform any job role is not. Being at home all day every day is not like being on "holiday" from work. It can be soul destroying. In the early days I would get up in the morning and cry because I would sit and contemplate whether or not I could handle everyday being like this until I died. I didn't want it to be like this.  So before you decide to tell someone who is chronically sick that you would love to not have to go to work and stay at home everyday, think about it. Do you want the chronic illness that goes with it?