Chronic Pain with Chronic Illness

I get my medication each week in a dosette box made up by my local pharmacist. I take so many medications that when I am not well I find it hard to work out what I have taken and what I still need to take. I now don’t need to think about what I take, I just pop them out the relevant space and swallow them down in one.

Today I noticed something though. There were 5 unopened pods from this last week. The 5 unopened pods were all my lunchtime doses of pain killers. I had not been aware of deliberately not taking them but because I was not aware of not taking them then that means I was not in pain and needing them.

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Chronic pain is one part of my health that I shunned for so long. I had always had this perception that I was weak because I was in pain and also was very aware that the Dr’s may think I was just attention seeking or drug seeking. I think I thought this because of the number of times I have seen and heard the conversations had when people come in to hospital with abdominal pain with no real cause and the suggestion of it being psychological or drug seeking.

For many years I lived with pain in my chest specifically the left side of my chest/lung. Part of me didnt want to acknowledge it and if I didnt then I would be ok but then it was harder and harder to function due to the pain I was experiencing. It was one hospital admission when I was in ICU and due to staffing I was being looked after by an ICU advanced nurse practitioner. I think her experience of being a nurse and seeing patients in pain she could tell what was real pain. I had not been asking for pain killers but she could see me wincing and struggling. It was only after she spoke to me about it that I finally admitted to the pain and feeling I had when I took a breath in, the pain was not nearly as bad when exhaling but felt like something rubbing and stabbing when I inhaled. It was from then I spoke up about it and we looked into what was causing the pain. From then I have reluctantly taken painkillers regularly.

Further investigation was done into the area of my chest where I had the worst pain. X-rays showed I had previously fractured some of the ribs- most likely occurring due to coughing and my slightly weaker bones but it didnt show anything major that would explain the sharp, rubbing pain I would get when breathing in but didnt hurt if you pressed on it. I had a CT scan which revealed why I was so sore. A lot of scarring in that part of my lung but also the pleura didnt look normal and the Dr thinks this is what is causing the pain and rubbing feeling. I have never really had a bad bout of pleurisy but the Dr said the way I was describing it the pain made them think it was pleuritic even though I didnt have the infection etc to go with it. I was told that the cause has most likely been due to the infection, trauma and recurrent asthma attacks over the years that have never really had much time to recover before the next thing hit.

Managing pain with a lung condition has really been a big struggle. Certain drugs are out of the question- non-steroidal anti-inflammatory drugs are a total no no and I learnt the hard way when I decided to try ibuprofen gel on my skin but had a full allergic reaction to it (I thought it was just if I took the pills). The aim with pain control is to eliminate pain and allow everyday function which is what I tried to achieve but have never been able to do. To get optimal pain control meant side effects which often meant feeling dopey. I got onto a regime using co-codamol and nefopam which helped although during the week I would use a lower dose of co-codamol due to it making me feel like my head was in the clouds but this meant by the end of the day I was in so much pain. It would feel like the outside of my lung was on fire- no matter how gentle you were you when you took a breath in the pain was the same. To control this part I had oral morphine that I could take at night before doing nebulisers and physio. I went with this regime for a few years until I saw a Dr who decided I should be switched to prolonged release morphine rather than the nefopam, co-codamol and oromorph mix. I was reluctant about this as had a handle on what I was doing and although the pain was never gone it was far more bearable.

The Dr who thought outside the box was a consultant who I had not seen before but was a respiratory consultant. He asked me about the pain and what it felt like, and also what was important to me about everyday function and that if I could I didnt want to be taking painkillers you can get addicted to! I was only 30 at the time and was already taking more painkillers than I liked and it was a worry for the future if I did something that needed pain relief I had this image that they would think I was a junkie because would need a higher dose of painkiller than I should. The Dr said his main concern was getting the pain under control for me to function and be relatively pain free but I should not be on prolonged release morphine etc due to it suppressing your respiratory effort which I can afford to do. I was so happy to know I wouldn’t be taking the MST anymore but a little worried about what I was going to be taking as could not go back to the pain I once had.

The Dr suggested lidocaine patches to wear topically on my chest where it hurts to see if this helped the main as he felt there is most likely nerve involvement and the whole area is constantly irritated which is why it is always sore. He did joke that you cant rest your lungs like you can a sore leg to let it get better!!

So a new regime of painkillers started which was the lidocaine patch, co-codamol 4 times a day and then the oromorph for when my chest is really bad (they also use it for breathlessness to). Since starting on this regime I have been stunned at how the patch has worked. It doesn’t take the pain away totally and the Dr said this is good as it means it will let you know when to stop!!!

Most recently since moving to my new consultant and being kept on the higher dose of prednisolone the pain in my chest has been no where near as bad. Instead of going through 2 bottles of oromorph a month I don’t even use a whole one and as I noticed last week I have not been needing my lunchtime dose of painkiller either. I am so happy about this. I have always had at the back of my mind I want to get off all painkillers so having a week of less pain and not needing the painkillers is great. When I see my consultant next I am going to ask if we can maybe just drop down on the dose of painkiller with a view to stopping them and just having the patch and maybe the oromorph for emergencies!

The lidocaine patch has been life changing- I do not understand how it works really but it works so I don’t care. I try not to wear them at the weekend to have a break and just keep them for work and weekends when I have lacrosse or something.

With each day that goes by just now I am in no doubt that I made the right decision to move consultant. If I didnt I am pretty sure I would have been in hospital by now. Staying on 20mg of prednisolone has got me through a chest infection without needing to increase the dose just a few extra nebulisers and antibiotics. Obviously 20mg of prednisolone long term is not good but I am hoping that as the mepolizumab starts working I will notice the difference and we can reduce the prednisolone!!

Was it just an April fool or are the NHS sites going smoke free?

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Driving into work yesterday a lot of the news on the radio was about the NHS sites are going smoke free, meaning no one is allowed to smoke in or around the hospital sites. For me this was great. It meant going into to work and not worrying about walking round the entire site to find a door where no one was smoking outside it and having to walk through a fog of smoke potentially causing me a life threatening asthma attack.

But…

As I left my car in the cap park to walk into the hospital I wondered if it was a big April fool. I passed more people smoking as they left the hospital to the car park than normal. Going from the hospital to the car park is all hospital site. No one seemed bothered that they were smoking. No one was patrolling to stop people smoking. Maybe it is just a big April fool giving so many people false hope. The hope that they can move around there work place without navigating and avoiding all the smokers hot spots.

At lunch a few were saying it is ridiculous they have to go of the site to smoke because it is hard to go without a cigarette when you smoke. My argument is that smoking is a choice. You choose to smoke. You choose to risk addiction, you choose to smell of stale smoke, you choose to waste your money, you choose to risk long term damage to your health.

But ultimately you choose to risk the lives of other people who you subject to your smoking or stale smoke left on your clothes.

When you have a condition that effects your breathing through no fault of your own, you have not inhaled toxic substances or abused your lungs, but your lungs are just rubbish you do all you can to look after those lungs and protect your breathing.

I don’t have a choice about how my lungs are. They are just that way.

You do have a choice, you have a choice to preserve your own lungs but also the lungs of others.

You can’t see chronic breathing conditions. You don’t know if the person walking past you may end up in the high dependancy because of the smoke from your cigarette. You don’t think about that. All you think about is getting your nicotine fix, and that trumps all your other thoughts, thoughts that you have when at work about saving people or getting them better or what it may have been that caused them to become so poorly.

I know some who read this will think it is totally over the top and I should not get so wound up about people smoking on or off a hospital site but this is the real way I feel. Living in fear knowing someone else actions which won’t effect them can be devastating for someone else shouldn’t happen. It does and will continue into the future.

I have many friends who smoke, family members who smoke and have had partners who smoke and none of them really understand the full impact their habit has on me. Even the smoke lingering on their clothes can leave me needing my inhaler. I hate making a fuss about it and in this post it is the only real time I can express exactly how I feel about it and its impact on me. Many just think take your inhaler it will be fine but its not. And if those closest to me don’t understand the risks then how will anyone else.

My main point is that smokers have a choice no one forced them, those with difficult asthma and CF etc do not have a choice. I often ask why did I get the rubbish lungs. Why not give them to someone who smokes..its what their lungs will end up like in the end. A smoking habit will leave you gasping for breath, chronic chest infections, a persistent cough, and lungs which are so poor at turning oxygen into carbon dioxide that too much oxygen can be more dangerous than low oxygen. I do not wish this on anyone but in my dark moments when I struggle to breathe and every little thing takes so much effort I do think why me? what did I do? Part of me sometimes wonders that perhaps if I had smoked or inhaled a toxic chemical or something then at least there would be a reason and a cause for my asthma being as it is but there is not. Most of the time I can deal with this but on some occasions it is really hard.

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(do you want your lungs to look like the ones on the right??)

If you smoke, try jumping ahead 30 years and see what your breathing will be like- put a close peg or something on your nose to stop you breathing through your nose and get a small plastic straw to put in your mouth and breathe through, now run as far as you can and see how difficult this is. You can take the close peg off, you ca take the straw out your mouth, you can breathe normally do you want to have a future where you can’t escape from breathing like that?

 

(I apologise for the way this post has come out. I am not aiming to attack smokers although reading back it does seem that way. But these are my true feelings and I have to be honest. With all my posts I never alter what I have written other than correct any spelling mistakes and grammar but thats it. I don’t change what I have written as what I have written comes from the heart)