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Linda Elsegood: I’d like to introduce Julie from England who takes LDN, fibromyalgia, and lupus. Thank you for joining me, Julie.
Julie: That's okay. You do it for pleasure.
Linda Elsegood: Could you tell us when you first started to feel unwell?
Julie:Um, it was about 1999 when I looked back. Um, and it was just, I used to get swelling in my left foot. I probably had it about free time.
Um, and then it just goes away. It was when I was really tired, and then it would go away when I sat and, um, You forget about it, you know, you just, um, a secret about it and seeing, oh, I don't know. Maybe he does a dummy or something, but then it went on to about 2006. I got pneumonia. Um, and I was hospitalized for eight days.
I couldn't find why it wasn't bacterial. Um, and in the end, I just kept here on my own. And then. After that, I had a lot of pain, and it's a long time to get over it. Um, and then they said I had side the myalgia, and that went. I was diagnosed in 2007, 2008, with fibromyalgia. And then I just used to have a flare if I would feel if I had a cold, if I had an upset stomach, just as that was passing, I would be then laid completely bedridden, total pain, complete from head to toe And couldn't move my head for about four or five days after being ill.
After that, he called after having an upset stomach and, um, I still, they said it was fibromyalgia. Um, and that went on actually until 2012. When by that time, I was losing weight. Um, I was very, very. Nearly lost my job. Very nearly just come on to it by the tips of my fingers. Um, I had just gone part-time. They made me go part-time because of side myalgia, but, um, I was still just cleaning into it and, um, At the end.
And then I started getting really bad man falses. And by the end of 2012, just at the beginning of 2013, I signed me, got diagnosed with lupus, add alone, along with the side, the mild child.
Linda Elsegood: And before you discovered that LDN, what would you say it now? Which day was like for you.
Julie: I don't remember what day it was going to be like. Um, it was, yeah, might have a good day, but mostly it would be staying on the sofa. Um, not knowing what was wrong. No. You know, just in my, in my head, I want you to do so much, but I just could not physically do it. I just did not do it. Um, in a flare during a flare, you know, all bets were off, but when I was not in a flare, I would still get pain, um, everywhere, even driving with NITSA, just, um, you know, Just get ready to go out and then I'd realize that I'd get to the car.
And then we like actually I've left from the upstairs, and I have to go back to the house. And that would be such an effort. Every day was a struggle good days. And bad days were struggles. I had some better days where I've got a bit more done, but my quality of life wasn't very good at all. And like I said, you know, I was on, I was on the verge of losing my job.
Linda Elsegood: So at that time, if you had to score your quality of life on a score of one to 10 and 10 being the best, What would it been?
Julie:I suppose three, four. I still I'd hoped that it was par. Yeah. Now I still had hope, but, um, yeah, I was very, very down and. And it wasn't depression. I know it wasn't depression because I've not, I don't think I really suffered from depression. I know that depression can be linked with lupus, but for me, it was because of my situation because.
I just couldn't shake it off. I just couldn't shake it off. And you know, you are asleep and think I'll just have a little shape, and it'll be a bit that I'm going to wake up, but I never was. I never was. The fatigue was always there. Pain playing in a net, Lisa random, you know, one day you just wouldn't be able to lift your arm.
It's so random, and I never knew what any day was, you know, I could never plan anything. It would be it depending on how I am, you know, it was just, couldn't make times really, um, and had to cancel things. And
just not going out because. That was my quality of life. You know, it just wasn't, um, letting people down and then feeling that feeling bad because of that. And that would get you down, but I couldn't help it. I just could not help it. I could not do very much at all.
Linda Elsegood: Yeah. Okay. So how did you hear LDM?
Julie: I first heard about it on the internet, um, actually on the health and looked site. Um, the lupus health on Luxilight, which I joined. And I stood up to Chris Steele's, um, video or DVD on YouTube. And I watched that, and I thought, well, I've got to investigate this. So then I just really started investigating, and yeah, I learn for it.
Linda Elsegood: And when you first started, did you notice any introductory side effects?
Julie: I would say, and I would want, this would happen because when I first started here, I was still on steroids. I was on steroids for lupus because other medication that had been on methotrexate for one hadn't agreed with me for that to come off of that.
And I was on steroids. So 10 milligrams a day, um, So I continued to take steroids and started LDN very low. And initially, I'd say maybe three days, three, maybe four days I was on this would happen by my prescribing doctor. The pain got a bit worse. Um, but I persevered, um, And then just slowly, very gradually began reducing steroid, letting it stabilize and up in the LDM, but it was a gradual process.
And I did, I would say about the second week of taking the LDN. I got a cold normally. It's the cold would be subsiding. I would be bedridden with pain, really, really raked with pain everywhere. But I managed to carry on going to work, which for me was fantastic. It was almost like a normal person having a cold.
I managed to work for it. I was tired, and you know, to rest when I got in from work. But. It was great to be able to, to not go into the fare. I didn't go into the flair. And that was the LDM working. I know it was 2000, 2008, any little cold, I, you know, just not used to fix.
Linda Elsegood: So how long have you been on LDN now?
Julie: I started LDN, and I know the day if my mom's birthday or on March 11, 2014.
Okay. And I haven't had to go and work.
Linda Elsegood: I mean, you haven't been on it that long. I mean we're now June.
Julie: Yeah. So like, yeah, exactly. And are now still it free to about the power. Four or five weeks, they were afraid. I'm just an LDN now. And I'm high blood pressure tablets. I still take those. But other than that, there's the occasional occasionally if I do still get pain, but I can cope with it.
It doesn't wear me down. It's all manageable. If I get, at the bad time I will take ascent or paracetamol, but that's it that's the most touch it. That's what I'm taking now.
Linda Elsegood: Okay. And on the score of one to 10, for the quality of life, 10 being the best, what would it be now?
Julie: It's eight or nine. I've still got lupus.
Um, and like you said, it's early days. I'm not cured, but I am living again previously. I was not living. I was just existing, and I can plan, I can plan things. Um, Lastly comment on a union conference for five days managed to do all that previously. I couldn't have said I'll go somewhere. We've worked for five days because I couldn't, I wouldn't have known how I was going to be each day.
So I am living now, and it's great. I'm so I just really, really. 10, if you to give it a try, you've got absolutely nothing to leave and every sheet again,
Linda Elsegood: thank you very much for sharing your wonderful experience with us. It's really amazing. Very inspiring. Thank you.
Any questions or comments you may have, please contact us. I look forward to hearing from you. Thank you for joining us today. We really appreciated your company. Until next time, stay safe and keep well.