Dear Bug… Let’s Talk Changing Medications

Dear Bug… Let’s Talk Changing Medications

These past few months have been very frustrating because it has been a stop-start affair. Everything has been put on hold for so long, I’m getting frustrated with my own body (even more so than normal). I’m just floored by my own exhaustion and agony that has taken me by surprise. I mean all I did was change my medication on a consultant’s advice. What could go wrong?!

It’s never been a pleasant journey when I tamper with the delicate balance of having medication throughout the day. What I’ve come to realise is that changing dosage and changing medication, in my body, are completely different objectives to overcome. When I was going through a period of being sick very often, my antiemetic was upped and it settled down. That’s bearable with, in fact my symptoms were elevated, so it was good. It was also a relatively mild drug to have changed so it was fine. All was sorted.

However, when I got the sickness again, it couldn’t be upped anymore, so I had to be put on another antiemetic too. I couldn’t come off the old one because they were only strong enough together. This is how I’m now on a long list of drugs, taken seven times a day and allow me to survive hour by hour in my little world of One Room. Most days. Over the years, I swear I can metaphorically hear the rattle of pills in my bones, as I take them so often. I’m not someone who likes to be on lots of medication unless I really need them. Hopefully most people are like that but there is a certain fear of what the drugs are doing to your insides or what it will be like without that particular drug, because the symptoms that they cover are so horrendous.

In hospital I ended up on over twenty different drugs going down my nasal gastric tube and that just went badly wrong in all manners, so I try my upmost to never get into that position again. My body has a funny way of trying to say to me that it has had enough of all the interventions… it projectile vomits constantly for a few weeks then it leaves me to look like a complete junkie, as I withdraw from all of those drugs then it settles back down. Maybe that’s the body’s way of throwing the toys out of the pram. Well, it certainly worked. The experience was so heinous that it has made me think about my body, mind and spirit. Although in my mind, I just want to be off the drugs as it scares me to rely on something, my body is too fragile and unwell. My spirit continues to push to try and bring down some of the dosages of medication even when I’m suffering badly and that keeps me going. You see, all the medications that I take are just symptom control, they don’t make me better. If I don’t take them at exactly the same time, the M.E. Monster takes over and cackles maliciously at me and I’m a mess.

So it may come as a surprise to you when I tell you I went to tackle the big baddie, Mr Morphine, first. Over the years, I’ve been on many different forms of it, very high dose patches, double patches, IV, sub cut, liquid, and tablets. I hate the drug but it was entirely necessary at the time. The patches make my hair fall out (you see there was a reason why I had a massive hair cut!) and cause all sorts of side effects. I hate the drug so much that I’ve tried other pain relief called synthetic opiates, thinking that meant I had finally stopped Mr Morphine that had been needed to control my pain. It was only when I was taken off them with immediate effect because the particular drug, Tramadol, can cause seizures and that was something I suffered from that I realised they were just as dangerous. Thank goodness for a good pharmacist. My doctor then went onto say as she put me back onto slow release Mr Morphine that really synthetic opiates are just as harmful/addictive as Mr Morphine, sometimes more so.
“Did I mention that I really hate morphine?” I moaned as the prescription was being printed.
“Would you prefer to be in the excruciating pain?” She said. “Anyway, I need to stop the withdrawal symptoms from the Tramadol by replacing the drug. Otherwise, your pain will rocket.”
“That sounds like too much energy.”

The battle with Mr Morphine has been a long one, over a decade in fact. The real me, the person, the mind, the spirit couldn’t give a damn about Mr Morphine. To this day, I’ve come from the highest dosage of patch morphine to a minute 10mg every evening. I’ve been weaning myself off this drug for nearly a year. The hardest part are the smaller doses because that is when every part of your body, yearns the drug. All symptoms flare up but the hardest thing to come to terms with is that my body, not me, is addicted to the poxy drug. I know it’s not helping me anymore because I’ve been on it so long. I’m not just going from having morphine to nothing, I hasten to add. Instead, I’m trying a lot of topical drugs. This was a suggestion by my doctor, which I voluntarily agreed with. One less rattle. I slowly came from 60mg per day down to 10mg but I’m still trying to kick the last dose. For breakthrough pain, I take OxyContin. Yep, Mr Morphine. So with Mr Morphine, I have come to this conclusion, by the end of the year, I will have kicked the 10mg slow release and will only have the breakthrough when nothing else works. Currently, this has taken a back burner, due another change in medication.

In August, I had a positive appointment with a neurologist, (I even tweeted about it, I was that excited)! I took a prophylactic antibiotic for my recurrent infections, in January. It did not agree with me and left me with tremors. They think it has triggered my dystonia is the short story. The consultant was great! I’m already on a lot of muscle relaxants, for general neurological shakes from the M.E. and then quite a few for sleep. The only option we had was to change my regular muscle relaxant,(Baclofen) that had stopped working, to another one, Tizanidine. I’ve decided that this drug is actually a teenager in disguise – it’s brought me back to when I first became unwell with M.E. back in 2006.

The idea was I upped the Tizanidine every time, I lowered the Baclofen, until eventually I would be off Baclofen and just on the new Tizanidine. The good news is it has taken away the tremors, but my goodness has it caused hell to get used too. The first time I took it, I was out like a light for three hours then couldn’t get back to sleep. I physically couldn’t move, my head felt like lead, my arms and legs were a dead weight. I continued on, feeling like a zombie and generally very ill. It’s so frustrating in so many ways: I was sleeping during the day and awake at night. But this didn’t figure and on wondering why I felt quite so ill, Dr Google came up with the answer! I was suffering more so due to withdrawal symptoms from Baclofen! Yes, the one that tasted innocently of a sweetshop…

I’m now off the Baclofen so have got a few more days on withdrawal and then we should be back on track.

People who have to take medications regularly due to chronic health are playing a juggling act constantly, trying to control symptoms. When it feels like there is nothing you can do to help, just trying to understand and being there is enough.