SO ******* tired
So I live with the almost constant pain of Myotonic Dystrophy. Like I have just completed a marathon run. I live with the limited mobility. I cope with the fear of the future for myself and loved ones.
The thing I struggle with. Above all else is the fatigue. The almost constant feeling as though my brain is in a fog. The unstoppable falling asleep in the early evening no matter how hard I try to stay awake. The superhuman effort to make a cup of tea.
IT IS NOT A CASE OF NEEDING MORE SLEEP.
It is an invisible part of MD that people who don’t experience fatigue find hard to understand. I would love to have an extra-long sleep and wake up fresh and raring to go. This has not happened for many years now. I have little hope it will improve any time soon.
Some sufferers of Myotonic Dystrophy have been prescribed Modafinil: a drug used to combat daytime sleepiness. Results have varied but a good number of people have described it as nothing short of life changing. The tiredness has gone. It is not a cure and will only work as long as you take it.
I want to try it. I have been to my doctor. Who would not make a decision and referred to my specialist. Who to my surprise did not seem able to make a decision either. She passed it on to another doctor who I have never met. He refused my request. Because “it is not usually prescribed." What kind of answer is that?
But who is best placed to make this decision? Is it the person who has studied it the most? The longest? The person who knows me best?
A medical degree in this country takes 5 years. Myotonic Dystrophy is barely covered if at all. There are very few certified specialists in Myotonic Dystrophy. Especially here in the UK
I have lived with and studied Myotonic Dystrophy for 13 years. While I am not a doctor, I have spent countless hours researching the condition, the available evidence, and the potential risks and benefits of Modafinil. Not only that, I suffer from the condition. I know exactly how it feels.
This issue is not over. I have a meeting with my specialist where this issue will be brought up.
But right now, I feel so ****** tired.
UPDATE
So I met with my specialist who was reluctant to even consider my request to prescribe me with Modafinil. "We don't usually prescribe it for that". I would not let it go. Finally, she said, "Have a heart test and if you can find one paper supporting Modafinil for Myotonic Dystrophy, I can reconsider." Her look told me I wouldn't find any papers.
I had my heart test which came back fine and then I sent the specialist 19 papers and studies supporting the use of Modafinil to help in people with Myotonic Dystrophy along with the most pertinent quotes and the URL to the specific paper. Another email saying I knew the risks and accepted them and then...
MODAFINIL WAS FINALLY PRESCRIBED!
But the Story Did Not End There
This is a medicine that I will need as a repeat prescription. Possibly for life. This comes from my local GP practice. (It is not for my specialist to write repeat prescriptions forever) I thought this would be a fairly easy process with a letter from my specialist. No. My local GP practice refused point blank to facilitate this move. No explanation. No real reason. "We don't know enough" — or perhaps, another way of seeing it: "We don't care."
This went on for a year. My specialist writing me new prescriptions and writing to my doctor to take over. "No" they chanted.
I HAD TO ACT
I sent the letter similar to the one above. I challenged my doctors to refute my specialist and every single one of the papers that I sent them. In detail. With evidence showing why every study was flawed. For every single paper
A little while later I got a text (not a letter) saying that after having a meeting with all of the doctors and managers they have now agreed to my request for a repeat prescription. The one I had asked for a year ago.
The first batch arrived yesterday. Different brand to what I have been taking but it is fine.
Looking back, I still find myself asking: why did it have to be such a battle?