Jillian talks fibromyalgia, medicinal marijuana, and family life with chronic illness.
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Transcript
Hi, I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.
Today I’m talking to Jillian about fibromyalgia. I connected with Jillian through a chronic illness facebook group, and we recorded this interview back in June. This is one of my first interviews and my microphone was missing at the time we recorded, so I apologize right now for any and all sound quality issues.
We ended up talking a lot about medical marijuana and legalization, which is funny, because when we recorded this I thought that recreational marijuana would be available in Massachusetts by July, and she was talking about the problems with legal grey areas in Canada. As it turned out, Canada has since completely legalized recreational marijuana and Massachusetts still hasn’t finished the process.
We also talk a lot about the way chronic illness impacts your family life, and I really appreciate everything that Jillian shares about her own experiences with marriage and raising kids while living with fibro.
As usual, I refer to my own health throughout our conversation, so if you want to know more about that then check out Episode 1.
And of course I’ve got my normal disclaimer:
This podcast is not intended as a substitute for professional medical advice, diagnosis or treatment. Make sure you talk to your practitioner about any questions or symptoms.
[guitar riff]
Brianne: Really? How about, do you want to tell me about the beginning of your health process?
Jillian: Well, okay, most times you’ll see people say, or doctors are saying that there’s been some traumatic childhood experience that makes you end up getting fibro of ME. Which, I didn’t really have a traumatic childhood, I had a good childhood. Or an injury of some sort. Well, I did fracture my skull at 17, pretty severe, off a horse. And I don’t remember ever not feeling really healthy like, I’ve always been tired. Chronic tired.
Brianne: Since you were a kid?
Jillian: Yes. I used to sleep 14 hours at a time, I just slept. And then when I went into my industry of training horses and farming, basically dairy farming, well, we’re doing such wicked hours. You put your tiredness down to the work. It’s making me really tired. But when I left it, I was still tired and doctors never found a reason. And I’d be hospitalized once a year at least, twice, really sick, vomiting, and not being able to keep anything down, and they’d just say, “Oh, you’ve got a virus or something. We’ll keep you here a couple days, rehydrate you, and you can go.”
Brianne: So it looked kind of like stomach flu?
Jillian: Yeah.
Brianne: A regular, twice-a-year stomach flu.
Jillian: But the difference is for the first part of my life, I didn’t have the pain that I started getting.
Brianne: So you were really tired for decades, would it be fair to say? Decades of fatigue and thinking that that was normal.
Jillian: And randomly being sick, for no reason. And then I’m going to say, I remember after I have my second child, that’s when I started feeling pain. But it wasn’t really bad pain. And I remember telling my doctor, and she automatically said, “You’re depressed.”
Brianne: Yep.
Jillain: And she put me on antidepressants. And I remember saying to her, “I don’t have any reason to be depressed. I’m not depressed. I have everything I want.” And blah blah blah. And she still said, “No, no, you can be depressed.” So I took the meds.
Brianne: And what kind of pain was it? Joint pain, or generalized pain, or neuropathy?
Jillian: Joint pain. So then of course, I continued on with farming, and with the horses and everything. And I would say that’s what kept me going was my horses. So then my daughter was born 23 years ago. My second child. So 23 years ago is when I started feeling the fibromyalgia part of things, but I didn’t know it.
Brianne: Right. You just thought you were tired and you were starting to ache.
Jillian: And the doctor told me I was depressed.
Brianne: Right, yes. This is a common theme.
Jillian: And I’d never heard of, I mean, fibromyalgia back then, I don’t even think it was a word. I don’t think we used that word back then. So I went through life just thinking, “Well, this is the norm.” And then, when I moved to the states ten or 11 years ago, I started getting sick quite often, and there was no reason for it. The doctor couldn’t find anything wrong, like a virus or I didn’t have a cold, but I was in bed a week with migraines and everything possible. But I wasn’t… there was no reason. So he is the one who told me, “I’m going to check you for fibromyalgia.” And that’s where I found out about it. And he did it, obviously, by elimination. Check your thyroid, check your gallbladder, check your liver, check your kidneys, do the cbd blood count, everything. Everything came back good. And so he did the common pressure points that they do test, and I think the doctors are moving away from that now. Because I know people that you can push on that pressure point and they don’t feel anything. And they’re still sick.
So he diagnosed me, put me on a tramadol and stomach pills, and said, “That’s all.” He didn’t even give me a followup treatment. Nothing.
Brianne: Just go out into the world.
Jillian: So I went on and I felt better. And the tramadol made me feel very nice and relaxing and levelheaded. I thought, “Okay, this is the answer.” And I was happy about that.
Brianne: Were you still on antidepressants from before that?
Jillian: No, I had gone off those. Probably three years into starting that first set of them I stopped.
Brianne: Because they weren’t helping the problem that you had.
Jillian: They weren’t helping. And then I changed doctors, we moved and stuff. But I always put it down to my lifestyle. It’s what I do for work, maybe that’s what it is.
Brianne: Physical work, long hours.
Jillian: But then I was away from it for so long, and it was still happening. So I thought, “Well, this isn’t normal.” The one thing about the States that I love, and I know health care is a huge debate between Canadians and Americans. But in the States I got my diagnosis, and I got it pretty quick. Whereas here it would have been a whole different story, I’m telling you. You kind of get what you pay for there. Of course, I was married to an American, but I still wasn’t covered under health care, medicare, medicaid or anything like that. I paid for everything. When you pay for it, you get your results and you get looked at. And I kind of liked that idea. Whereas here, you sit for five, ten years and wait. So I moved back to Canada, after two years in the States. And I was on that tramadol and I noticed when I got back to Canada, the tramadol stopped working. The pain was always there, but not as bad pain. The pain was getting back to being high levels. Tiredness again, everything. Memory loss, all the cognitive functions were going. So luckily I have a friend here knew a doctor, a specialist for multiple sclerosis. So I went to see him. He had written many books and he’s not a fibro expert,
but he knew enough about fibromyalgia to help me. So I went with him, and what I didn’t like is he put me on about eight to ten medications.
Brianne: Oh wow.
Jillian: Yeah. One for pain! One for your sickness! One for anxiety! One for your memory! One for this! And I hate pills, I hate taking them. I absolutely don’t like putting drugs in my body that I don’t need to.
Brianne: Yeah, I think that’s fair. I’m not anti-medication, but it’s hard when you’re getting so many thrown at you that you can’t really tell what is really helping and what isn’t.
Jillian: Yeah, so he was good in one way, but in another way he prescribed way too many pills all the time. So what I did was I started to research this on my own. And I started to research and read stories from other people and. And seeing the similarities, and everybody that said, “Yeah, we were on medication, but it only worked for so long, and then it wouldn’t work.” And that’s exactly what was happening, every medication I took only worked for so long, then it wouldn’t work anymore. Then he’d switch it to something else. So I took myself off… I stayed on two of those pills. One was clonazepam, which I still take every night for my sleep. And one was the xanax for anxiety. I took everything else off my plate. And he was really good in a way that he would talk with you and he said, “Well, it’s your body, if you want to do this, we’ll do things the way you want to do them.” So then, I obviously altered my lifestyle. I started to rest more. I went on medical leave from work. At the time I came back from the States, I didn’t have horses at that time, and so I was really just taking care of myself. My kids, my two older kids, were grown enough to look after themselves. Actually, my daughter had a baby in that time, so, like…
Brianne: Different chaos.
Jillian: And then I met someone and actually at 43 I became pregnant, which I didn’t think I could.
Brianne: Surprise!
Jillian: Yup.Well, the first pregnancy I ended up miscarrying, and then we planned the second one because he didn’t have any children of his own. And the reason I miscarried that first time was because I’m on medications. Very high, very harsh medication. So I went off the medications and I got pregnant again, and I stayed off because when you’re pregnant, it masks your fibro symptoms.
Brianne: I was just going to ask that, because I’ve heard that before. So how did you feel when you were pregnant ? Did you have any new symptoms? Or did you resolve? What changed?
Jillian: The first three months was hell. I was as sick as sick could be. Morning sickness. I mean, terrible morning sickness. And of course, they can only do so much when you’re pregnant. You can’t take too much. Finally in the third month it left, and then it was a really good pregnancy. I was heavily tired, fatigue was there of course. But I was pain free.
Brianne: Okay, so your pain symptoms cleared up while you were pregnant. Was the fatigue kind of the same as what you were used?
Jillian: Yeah. And so I asked my doctor, and I told him my pain wasn’t there when I was pregnant. And he said fibro masks pregnancy pains, that’s kind of your break from it.
Brianne: That’s so interesting.
Jillian: A lot of people ask if they should get pregnant, how’s it going to affect them. And I’m sure for some people it doesn’t mask the pain, but primarily he told me that it’s pretty common. So after I had my youngest daughter, everything just started getting really bad. I was getting flares all the time. I was on only the two medications. So then I looked into medicinal marijuana. And I’d smoked pot earlier in my life. And I had noticed, when I first came back from Canada. I had one of my friends say, “Try this at night, it’s going to help.” And it did. What I didn’t like was buying it off the street. I didn’t know what was in it.
Brianne: Yeah. And that’s something that is changing so quickly now in a lot of places. What province are you in?
Jillian: Saskatchewan. So I ended up finding a dispensary, this is before any talk of legalization happened, and she has medicinal quality everything. Edibles, vapes, cream, everything. So I started with the edibles. I took the THC edibles and the CBD edibles. Well the THC, I couldn’t find an amount small enough that wouldn’t make me super high all day, and I didn’t want to be that way. I can’t function and be really high. I have a child and I started back into horses, so there was no way. So then I actually stopped it for a while.
Brianne: Did you find the CBD helpful? Just CBD?
Jillian: It actually helped with clarity and more of your fibro fog.
Brianne: Okay, so with mental stuff.
Jillian: Yeah, and the THC, like I said, it took the pain away.
Brianne: But not if you wanted to…
Jillian: So I went away from it for a while and I’ve been living with pain for over 20 years. I’m so used to it. I’m always in pain. It doesn’t matter. I’m in pain and you just get used to it. So I went away from it for a while, and it’s expensive. And my doctor retired, so I had to find another doctor. Now, this is where it got silly. Finding another doctor that knew anything about fibro in Saskatchewan is a joke. Or ME. And then one that’ll support you doing medicinal marijuana. So I actually have my license. So I tried to see doctors, I was called a drug addict. I was sent to a psychiatrist who was supposed to help me get off drugs, which I was not on.
Brianne: Right. It wasn’t like you were using it constantly, or were worried about your consumption.
Jillian: So the psychiatrist said to me, “Why are you here?” I said, “Well, because this doctor sent me here. He goes, “Well, it says that you’re addicted to drugs.” And I said, “Are you kidding?” And so he assessed me, and he said, “You’re not only relying on drugs.”
Brianne: “No, I’m not worried.
Jillian: Well, I actually was going to give a piece of my mind to that doctor, but I never did. I hunted around, and I found this other one, and he actually sat down and listened. A lot of doctors, they want you in and out, they don’t want to hear about your… He actually sat down and listened, and I told him everything. And he said, “Well, I’ll be honest with you. I don’t know enough about medicinal marijuana, so I can’t support it, but I’m not going to be against it. I won’t prescribe it right now, but I’m willing to learn about it.” And then he said about the fibro part, “I’m not an expert, but I think between you and I, we can work together.” And he literally does. He asks me, “What do you think you need?” He knows the reason. Right now for example, I’m going off on an antidepressant that I’m on. Again, anxiety is very out of control. So I’ll go in and say to him, “Citalopram, I’m not going to take it anymore because I don’t need it anymore. And he’ll say, “Okay.” And he’ll sign me off. Or when they put me on cymbalta, ever medication I go on and I research, So I said, “Doctor, do you know that this stuff is going to kill me faster than the fibro or the ME?” So I said, “No, I’m not going on this.” “No problem.” He’s very good about that.
Brianne: That sounds incredible compared to what a lot of doctors are like, in my experience.
Jillian: Oh I know. And he’s very accommodating. Most times now I have to wear sunglasses because I’m sensitive to light really badly. He will say, “Do you want me to shut the lights off?” And he’s told me what kind of sunglasses I should get, he’s really good that way. No other doctor did that. Other than my specialist of course, and he’s retired. So that’s good, I’ve got a good doctor right now. And I also found out from another guy that’s got fibromyalgia in the city, that he found a doctor that’s really good about it and actually has prescribed him medicinal marijuana and did it for free. So that was really good. Because I paid 90 bucks for the card and the consultation. And I had to get a psychologist from Vancouver to give me the prescription. So I mean, maybe the medical community is starting to realize… or I actually don’t think the medical community thinks that it’s harmful. I think the pharmaceutical company has told the medical community we don’t want this on the market. We don’t want this being news, because it’s beneficial, and it’s going to take away from all our products. And we’re not going to make any money.
Brianne: Yeah, that sounds about right to me. So that’s kind of where you are now. So are you working now?
Jillian: No.
Brianne: No, not working. So you said you took a medical leave quite a while ago.
Jillian: Yeah, then I went… how did that work. I then went back to work for a while, and I said “No, I can’t do this. I’m not a productive worker.” I could go in and I could maybe do three hours, and they were accommodating, I got extra long breaks. I could go sit if I needed to. If I missed a day, it wasn’t a big deal. But to me that’s not a productive worker, I don’t like that. So I quit. And my doctor said I was ready to apply for disability and wrote a letter, and he was very good at how he wrote that letter because it was truth and it was written properly. Of course I was denied.
Brianne: Yeah, I was going to say, that’s a hard process, isn’t it? Especially with stuff like this.
Jillian: Yep.
Brianne: Is it through CPP? I haven’t done it.
Jillian: There’s two different ones.
Brianne: Oh there’s temporary and there’s permanent, isn’t there? Something like that?
Jillian: Well, here we have the CPP disability or we have disability through social services. So if you’re on social services and you get a disability… like my daughter right now, either she’s got what I have or she has MS. They did a spinal tap the other day and they’re going to find out for sure. She’s on social services right now because she can’t work. And whatever result comes out of it, she will go on to social services disability because she never worked enough to put into CPP.
Brianne: Because I’m recording this and I’m going to share it, CPP is Canada Pension Plan.
Jillian: So I was denied. So then I kind of took it as, “What will you do?” With fibro and ME, sometimes you don’t have a whole lot of fight in you.
Brianne: No. It’s exhausting.
Jillian: So I just did little odd jobs here and there to help out. My spouse works full time, so that’s a good thing. Then I decided to try again. And again, denied. And then I went to an advocate who specialized in this. So that was three years, then it took two years with the advocate and I have the stack of paperwork that she did… it’s like that. And the way she wrote it was brilliant because what they go by is they evaluate if you are prolonged and severe. Okay, so fibro and ME are prolonged and severe, that’s been proven. But if there’s any chance at all that you can do any work, any type of work. After being denied the second time, they actually offered me retraining. Because I’ve milked cows and trained horses all my life.
Brianne: Right. And you can’t do that physical work anymore.
Jillian: Yeah. So they retrained me and I took a youth care worker course, because I thought, “Well, I used to work with youth when I was really young in Vancouver and help them out. That might be something I’d enjoy.” I did the course, finished it, got a job. And the government part of it, the stuff that was going on within the system, I didn’t agree with their work and foster care and all that. And plus, a lot of the places you have to work overnight shifts. So you’re up from nine pm till nine am, and I can’t do that.
Brianne: I couldn’t do that. No. I physically could not do that.
Jillian: I couldn’t. So I didn’t. I mean, I went to school and everything, and they did let me off without going to find a job because of my disability. It was getting worse as I was schooling.
Brianne: So when you say it was getting worse, what was that like?
Jillian: So more pain, more cognitive issues, things like I used to read. I used to be an avid reader, I could read a book in a night. Now it takes me a month because I read the same page 50 times.
Brianne: Right. You don’t retain it.
Jillian: I used to be a writer, a published writer. And I can’t do that anymore either, because I can’t focus long enough, I can’t find the words, I can’t… it just doesn’t sound as good. So things like math, sometimes I’m pretty good, but other times I look at something very simple and I don’t know what it is. It’s just your mind functions that way.
Brianne: Yeah, and it’s hard, from my experiences, just how unreliable it is. Kind of what you’re talking about with school or with the job, you could show up one day and be totally competent and then maybe nothing happens or maybe you don’t sleep well and you show up the next day and you’re just staring at whatever work you need to do like, “I’m supposed to figure this out?”
Jillian: Stress causes flares. And of course when you’re in school, you have exams and stuff. Well, that stresses you out. And then, oddly enough, although I was probably 40… I’m trying to think, my daughter was only two when I went back. And I’m 49 now… I can’t even think of the simple math. In my early 40s. All the other girls and guys, they’re in their 20s, they’re just out of high school. So they’re still in that high school mode. So then you’re dealing with drama and stupid stuff. I was thinking, this is stuff that even in high school I didn’t have to deal with. “You can hang out with me and you can’t.” And “Oh, why didn’t you come to this party?” Oh my god.
Brianne: It makes you glad not to be 20 anymore.
Jillian: So after I got out of school, I was glad. And then my spouse came to the understanding that I can’t work full time. So I found an advocate.
Brianne: So that’s when you started looking.
Jillian: And then she wrote it in the way of saying, yes it’s severe and prolonged, but they had to look at the fact that even though I have have good days, if somebody were to hire me the quality of work that I could do is what’s questionable. I cannot be a productive employee. So she really went on that part of it and I think that’s what made them change their mind. Because they could see that even though she may be going to work two days a week and could be great, the other four she’s not going to be productive. And what company’s going to keep you?
Brianne: And also, I guess the government might not care, but from my perspective I’ve been thinking about this a lot, it’s also what’s the harm being done to you if you force yourself to go to work on days when you know you’re going to pay for it? If there were magical jobs out there, which there aren’t really but I think there should be, where there weren’t deadlines, and so you could choose to do work on your two productive days and then choose to rest on those four days when you need to rest. I think if that magically existed, that could be good for your body, but we ruin our productive days when we have to push ourselves through those other days. It’s a terrible cycle.
Jillian: And so then a nurse that supposedly knows about fibro and ME, I’m not sure how much those CPP nurses know, but I thought, “Here we go again.” It was taking a long time, I wasn’t getting a reply. And then I got a phone call and she said, “We’ve approved you.” And I was like, “Whoa!” So I got approved for my CPP disability, which will carry until I’m 65, and then you go to your old age. So they ended up putting me on that and giving me backpay until my diagnosis year of 2006.
Brianne: Oh, wow.
Jillian: And you know what? The money was great and everything, but what I was really happy about was that finally they accepted this. They understood.
Brianne: The acknowledgment.
Jillian: Yeah. And for everybody else out there that’s trying, it’ll make it a little easier. So that went through good, I’m on disability. But I do have the option to make up to I think it’s $5,400 a year.
Brianne: I was going to ask about that.
Jillian: Yeah, you don’t even have to tell them. So one thing I found with this, and a lot of people will argue this, but for me it works. I can’t lay around and sit around. Even though I’m in pain or I’m tired. If I do that, I seize up and I’m in worse shape. So I make myself… every day I move about. I do things. Sometimes I actually push myself too hard most of time. I have two horses, so I’m out there. I give lessons. I tried just laying in bed and sucking it up. But I found myself getting worse and worse. So basically, I have now the option when I want, which I do, I made myself do that. I do some pet sitting, so right now I have a little dog here that I’m watching for five days. And I love animals, so I decided that’s where I wanted use the energy I have. And of course, being so experienced with horses, with the industry, I decided, “Well, I don’t have to take green young horses anymore and ride the buck out of them because I can’t. I won’t heal.” But I can give lessons, and I can sit down during a lesson. I can take breaks. So I do that. I give lessons now, and I ride my own, and I do the pet sitting. And I can make that work around me, I can take breaks. I set the days, I set the hours. Well, the petsitting obviously the clients have certain times.
Brianne: Sure, but you get to choose when you walk or feed or whatever the actual work is.
Jillian: It’s not like a child where you have to change diapers and get a bottle. With a dog, you let them out and you feed them. And take them for a walk if it’s nice. So that ended up working in my favor. And even though I still do everything like that, I just had a horrible flare over the weekend. And I was in bed for 24 hours. And then I always feel guilty because my daughter is seven, well she’ll be seven this month, June. I feel guilty because now I can’t interact with her and her dad has to do everything. But if I don’t, I just won’t function.
Brianne: If you don’t take the rest when you need it, it doesn’t help anybody.
Jillian: Exactly. And I overdid it. And I now know when it’s going to happen because on the weekend before, last weekend, I was helping the owner of the farm, she’s my friend now, I was helping her clean out the sheds. And I knew. I thought, “I’m going to pay for this.” And of course I did. But at least it was only 24 hours in bed, but a week of more pain than usual. And now it’s just starting to level out again. So it’s not so bad. And I did end up just a few months ago, I did go back to that dispensary and I asked her, “What can I take that’s not going to get me stoned?” Because that’s why I haven’t been back. So she recommended vaping, and she said two parts CBD to three parts THC. And honestly, that does not get you high, but it takes the pain away. We found a good balance. So I bought a vape pen and she gave me a vial of the mix. I still have it. I asked how long it would last and she said it depends how much you vape. I know people that sit there and vape every ten minutes. I only use it when I’m in big pain, and to help me sleep sometimes, and I don’t drive. Now here’s this thing, I have to find out legally in Canada because now if you get caught driving…
Brianne: Oh, right.
Jillian: It’s zero point… no, it would be more than that. The percentage of THC I think would render me impaired in the eyes of the law. So I need to find out if I vape today and I drive tomorrow and they pull me over and this shows up. Obviously we all know THC stays in your system for months.
Brianne: How are they testing that and what… ? That’s a good question. I’d never thought about that because I guess I’ve never thought about how it compares to alcohol, which you obviously process out of your system very quickly.
Jillian: Right, and THC stays in your system for months. And it’s the same thing as drinking, you’re going to get charged the same. And if I lost my vehicle, that would do me in. I wouldn’t be able to get to my horses. I live small town. I mean, I can’t walk that far.
Brianne: You need it.
Jillian: So I’m going to have to find out the laws on that because…
Brianne: Yeah, and what your ratio is, in terms of how much there is when you use the vape pen. However much is the most that you use it, how much is in your body the next day. That’s a good question. Whatever the equivalent of a breathalyzer is.
Jillian: Exactly. So I don’t know. Right now with the dispensaries, they can go and shut them down still. So she’s open, but she’s got a really good… Oh, what do you call it? She works really well with the police. She’s not doing this for a stupid reason, she’s absolutely all about it. Medical purposes. And she’s used it for her crohn’s and it’s helped her. So she has a good relationship with the police. So they don’t really bother her, but she knows if they come they will just shut her doors, they won’t take her product. So that’s good. Whereas they went to other dispensaries here and they’ve actually taken everything. CBD even, which is stupid because CBD isn’t even…
Brianne: It’s not an intoxicant.
Jillian: No. It’s not a psychoactive drug.
Brianne: It’s such a weird gray area right now in so many places. I remember when they were doing that in Toronto. A lot of dispensaries opened up in Toronto maybe four years ago. There there were so many, they were on every block on some of the main streets. And then there were a couple of times when police raided a lot of them all at once. And I’m sure some of the people running them are shady, and a lot of them were doing it because they knew it was going be legalized soon and they were trying to get ahead of the market. But there are lots of people who know that medical marijuana can be so helpful, and they just want to help.
Jillian: Exactly.
Brianne: So I have a couple other questions. Are we still good for time? I’m charging my watch right now.
Jillian: Yeah.
Brianne: So if we’re still good for time… you said you’ve done lots of research and you’ve researched all the medications that you’ve ever tried, is there anything else that’s come up while you’ve been researching? This happens to me so that’s partly why I’m asking, have you started wondering about environmental stuff or diet stuff or supplements. Have you gone down any of those wormholes in your research?
Jillian: Oh yeah. First of all, vitamins. I take vitamin B12 which really helps with energy. I’m not like Speedy Gonzales.
Brianne: But you notice a difference.
Jillian: And vitamin D. And that’s helpful for me because of my age. Actually, probably a multi vitamin and an extra vitamin B12, because there’s not enough in your multi. And then I researched different foods, so I went off red meat, which I found helped my IBS a lot. So I went off red meat, I eat lots of veggies and fruits, and I stay away from… very rarely do I have deep-fried stuff anymore. Spicy stuff bothers my stomach now. IBS is a huge symptom of fibro. I think definitely looking up the foods that we eat and picking the healthier ones is the way to go. And environmental? Absolutely. I think there’s stuff in our food and water that’s done this to us. I honestly think so, because they can’t figure out how you develop it. And there’s theories. But if you research areas like the UK, the UK has a huge amount of people with ME. ME is huge there. And you see how many people there have it compared to Canada compared to the States and compared to Asia. In Asia, I honestly haven’t heard of it. So you’ve got to think what’s going on in these areas that is causing people to get this? And I’m not a conspiracy theorist…
Brianne: Nothing you say is going to make me think you don’t have credibility, don’t worry, I get deep into this stuff.
Jillian: I started a support where I live, but so far it’s just me and this other guy, which I don’t know. He says the same thing. He said,”You know, I think there is something in the water and we know there’s stuff being sprayed in the sky, chem trails and all that.” So this could be causing a lot of this, you know what I mean?
Brianne: Yeah, definitely. I have a berkey water filter. It’s a metal container with charcoal cartridges. And it removes fluoride. And it’s basically designed to be used in the developing world so that you could turn, I don’t know, swamp water into drinkable water, and I just use it for everything. It filters out everything. Because I just don’t… I drank tap water my whole life, maybe tap water’s fine for me. But before I knew what would help me, I just wanted to get as many things out as possible. And I’m buying an air filter soon for my bedroom. I eat gluten free, which helps a lot. And I mostly just eat meat and vegetables, because I don’t have trouble with meat. I know other people who have trouble with meat, but it works well for me. And then I actually just found out that my really big flare last month was actually caused by toxic mold in my house. You know, you hear about this stuff, but I had never really learned about it before and what could make mold toxic to you. And I started having all these neurological symptoms that I’d never had before, I got a really bad tremor and I had nerve pain, neuropathy and just all this stuff. It felt like out of nowhere. I’d always had fatigue, but kind of like when you were describing the pain coming in. And for me, it lined up with moving into a new house, and it turned out that there was this single environmental factor that made things so much worse. So I wonder a lot about that…
Jillian: But is it… I don’t think that it’s the cause of it, I think that it makes it worse.
Brianne: Yeah. Because my husband was fine. One of us got radically sicker and couldn’t walk anymore, and one of us was like, “Oh, maybe my allergies were a little bit worse.” So I think there was something already happening. And with fibro and ME especially, there’s no good diagnostic criteria. There’s no good tests. Like You said at the beginning about the fibro test. And I just have this suspicion that there’s probably a whole bunch of different groups within each diagnosis who are the most affected by different things. There are definitely people who are more affected by mold, and then there are probably people who are more affected by whatever in their diet and it’s caused by all these different things. So do you have a theory for what made you sick specifically?
Jillian: I thought maybe the head injury I sustained when I was a teenager. I’m very much a fact and logical person, and I need facts to back things up.
Brianne: And that’s not provable.
Jillian: And I could never prove it. So I just remember getting sick a lot when I was little and being in the hospital. Maybe it started back then, I’m not sure. I’m still at a point where I’m moderate, I’m not severe. You know interestingly enough, you talk about genetics, I think it’s hereditary because my daughter, like I told you, either she has MS and I think she has fibro. But regardless, she has MS or she has fibro. My son has anky spondylitis and I also think he has fibro. Now genetically, I think it’s definitely possible to pass it on to your children because I’ve heard of other people that say, “Yeah, my daughter has it.” Or whoever. And now where was I going with this train of thought?
Brianne: Well, I was just saying do you have a theory for you? And you said maybe the head injury, but you can’t really know.
Jillian: So my mum, my mum developed alzheimer’s about five years ago. And I can remember before that, she had a lot of complaints that were in line with fibro. And again, no doctor thought about it. And my dad, well actually, he’s had a few things too, but not quite as much. But then I think back to my grandma that I never met from my mom. Well, she had the same kind of things, and then my dad’s mom had the same… like there’s kind of a pattern here. So it could be I inherited it.
Brianne: Right. That there was something going on, and then maybe the modern environment has made it worse, even. Or maybe it was always bad, and you just don’t know.
Jillian: The environment that we live in is making it worse. I’m sure you’ve watched that documentary by Jennifer Brea?
Brianne: I haven’t, but it’s coming to my town in two weeks, and I’m so excited. So I haven’t seen it yet, but I’m about to, but please talk about it.
Jillian: Well, it’s not like there’s a big plot and a big climax, it’s a documentary.
Brianne: Right, of course.
Jillian: She did the same thing as we’re doing. She looked into everything. Why? What causes? And the mold and everything. And she’s very severe, she’s bedridden most of the time and thens he has her good days too. But right now I’m just thinking I’m moderate, and I’ve been thinking eventually I think I’ll need to get a motorized scooter just to be able to go out. I love being outdoors. Right now if I want to go hiking, I ride my horse because…
Brianne: The horse does the walking.
Jillian: And I’m sore after that too.
Brianne: It’s still work.
Jillian: It’s not a thing I can do all the time. But just thinking about when you see how severe some people are, it’s scary to think that we can get to that. And maybe we won’t, but we don’t know.
Brianne: Yeah, you can’t know. And that it can happen kind of suddenly. Or sometimes you know, like you mentioned you worked too hard on the weekend or maybe on Friday and then on the weekend you had a rough day and then you still expect to bounce back. But sometimes it takes longer to bounce back and it’s a funny thing to be reckoning with all the time, I think.
Jillian: Oh, exactly. And do you find that you have people that don’t understand?
Brianne: Yeah. Something that is becoming a theme in these conversations that I’ve started to have is exactly that, how do you explain it to your friends and family if they don’t see it? So, my husband gets it because he’s the one who feeds me when I can’t make food for myself and so he can see how physically hard it is. But if it’s someone that I don’t see very often – sometimes even a good friend – and you try to explain it like, “Oh, well, I couldn’t get out of bed yesterday.” And they’re like, “Huh.” And maybe they compare it to their experiences and they think about choosing to stay in bed, like “That sounds nice. What a fun relaxing day.” But no. It wasn’t a fun relaxing day, it was awful. We don’t have good language for it. You could say fatigue or you can say pain, but someone who hasn’t experienced it on a chronic level, they’re imagining whatever they’ve experienced and it’s just not… they’re not related at all. I think that’s a problem with doctors too. One of the reasons that a lot of doctors don’t understand is you use those words with them, and it’s like you’re speaking a different language. And then I also think, especially since you’ve been navigating it for so long, people have trouble understanding the chronic part of chronic illness. So if you get the flu, people expect you to get better. So maybe they’ll bring you soup or something, people make gestures. But they make gestures expecting that they only have to make one or two gestures because it’ll be over soon. And when you have chronic illness, it’s never going to be over. Sometimes it will be good and we can have a more normal friendship, but I might need accommodations indefinitely. And what is that like? People don’t get it.
One of the reasons that I’m talking to people more is I hate that we don’t see it in movies or tv or anything. You don’t see any of them. So there’s the ME/fibro world and there’s the chronic lyme world and then there’s everything that’s autoimmune, which is a pretty big category, and then there’s genetic conditions. This is my mental map. Genetic conditions are… ankylosing spondylitis and then ehlers danlos I would put over there too, EDS. And you don’t see people with any of these conditions represented anywhere, so if you don’t know somebody who’s living with chronic illness, you could very easily have no idea just how it works or what it’s like. Whereas with the flu, you just know people, and then there’s a million movies about cancer and alzheimer’s now. So people only have context for a few ways that health can break down. You know what I mean?
Jillian: Well I think Jennifer Brea’s documentary has put it on the map, and I think there’s going to be more documentaries, more shows, more stuff about chronic illness. Well, I’m going to say ME and fibro. And they really outdid themselves this year with the million’s missing. A lot of cities represented. Not in Canada, not one.
Brianne: Really?
Jillian: I was so disgusted with that. When I put an ad up here for a support group, I said it would be online and eventually we could all meet if it’s in my area. I had one lady say, “Yeah, I have fibromyalgia.” And she never got back to me. And then this one guy. And it’s really me and him right now. And how do two people stand up for this sickness in this big country? You can’t. You need more people on board. And these people that did the millions missing, I mean they were sufferers, they were not well. And they went through it and stood up. It’s just amazing. I just don’t understand how for such a technologically driven society we are that we’re not further ahead. You know what I mean?
Brianne: Yeah.
Jillian: And I always watch now with my little girl, for signs. Like the other day, I’ve noticed certain sounds are starting to annoy her and I noticed her back was sore. And every time I think, “Oh boy, is this going to be fibro, is she going to develop fibro?” But the sensitivity to sound and noise and stuff is not really fibro, it’s ME related. And that’s a huge one, because you’re sitting there and your partner wants to play some music, and if you’re in a day where sound is just bothering you, you ask them to turn it off because it’s really actually hurting you. They don’t understand. You know, “You used to listen to heavy metal all the time!” Well, I can’t listen to it all the time now. It’s actually very rare now. Or light. I have shades and all dark curtains in the living room and my room. I have them drawn most of the time. Today, the light’s not blaring in here so bad, so I actually have them open. If he comes home, he whips open the blinds and I put y sunglasses on because I can’t tolerate it.
Brianne: And do you get migraines? You mentioned them.
Jillian: Yeah.
Brianne: You had them ongoing.
Jillian: Oh, yeah. And that’s another thing. I can’t find anything to take a migraine away. Tylenol doesn’t touch it. Advil doesn’t touch it. None of the medications over the counter touch it.
Brianne: That’s how, my husband went through a period where he was getting really bad cluster migraines, and he had never smoked pot before in his life. And that was when he started looking at it. And it was the same. Medical marijuana wasn’t available in every state. But they ran so many tests, everything came back fine. He was on a bunch of prescription medication and nothing made a difference. And I was just the only thing that could even touch it.
Jillian: Well, is it legalized in Massachusetts now?
Brianne: So it is in transition. Basically, they did a vote before. I just moved to Massachusetts. But they did a vote for recreational, so full legalization, and it was supposed to come through last year maybe, or at the last election. And it was supposed to start in January, and then they pushed it back to July so that they would have more time to sort out whatever licensing issues, but I think July 1st is when it’s supposed to become available. And so they have however many licenses to be able to sell it. And then medical was already legal. So first they let medical dispensaries apply for recreational sales, and then they opened it up to other people, and so apparently on July 1st you’ll be able to purchase it. But I think one of the reasons is the same thing that’s happening in a lot of cities and states is that once you legalize it, what do you do with all the people who are in prison for petty drug offences?
Jillian: Or have criminal records because of them.
Brianne: Yeah, exactly. And so it’s having piecemeal. A lot of cities are forgiving people and releasing people if they only have marijuana charges. But it’s kind of a legal wormhole, or wormhole is maybe the wrong word. But quagmire. It’s a legal quagmire, once you legalize something that’s been illegal for so long.
Jillian: Well in Canada they’re saying anybody who has a criminal record, their thinking, they’ll just expunge that. If it’s anything to do with marijuana.
Brianne: Just marijuana.
Jillian: Which would be good for a lot of people here, because they need to go to the States. Because if you have that on your record you can’t. Luckily, I didn’t ever have that. My spouse does, and he can’t go to the States. So if that happens, it’ll be a good thing. And the fact that we here can grow medical marijuana, I can grow five plants. And it’s five grams per plant, I think they said. So I can legally have them in my house. But now there’s another conundrum. Right now, there’s nothing been done about the criminal records. So if I’m growing marijuana in my house and he’s got a criminal record because of marijuana, is he going to get in trouble? Am I going to get in trouble? And it’s a small community here. And I know the RCMP. I know them quite well. And I don’t want any issues and problems. I don’t need that. And I mean, they’re still taking kids away from parents that have been caught with pot. So it’s not a good thing. But at least I have my license to back me up if something happens. But I don’t carry on me. I don’t ever take my pen with me anywhere. I don’t even risk it. The lady told me they can take your stuff, but they won’t charge you. I’m not even going to give them the opportunity to take it.
Brianne: Right, just don’t even go there.
Jillian: So it’ll be interesting. And they’re figuring things out right now, how are they going to tax it. They’re doing what’s going to profit them, the government. They’re trying to figure out a way that’s going to profit them.
Brianne: Yeah, of course.
Jillian: And if they don’t, if you overcharge, you’re just going to drive the black market deeper. People are still going to go underground to get it cheaper. So I think they’re just trying to figure out a balance right now. Hopefully. Right now, what did I pay? A hundred dollars and this stuff has lasted me now two months. That’s not bad. So if it stays like that I’ll be happy.
Brianne: Yeah, and when you’re buying the vape inserts, when you’re buying something that’s a little bit processed, you also know that work has gone into this and it’s easy and there’s a product here. As opposed to flowers where if you trusted somebody that wasn’t credible, you could maybe pay less.
Jillian: No, not here. I wouldn’t even try it because there’s been too many cases, especially with fentanyl being laced into it and stuff. It’s not even worth the risk. Not worth the risk. And we’ll see. I’ve never really bought it off the street per se, but I buy from a friend who bought from a friend that was a dealer. But then I didn’t know the dealer personally, so still, you don’t know.
Brianne: Yeah, it’s a different world when it’s all underground like that.
Jillian: And it puts you into that criminal element, and you don’t want to be in the criminal element of it all.
Brianne: You just want to be not in so much pain!
Jillian: Exactly.
Brianne: Okay, I think we covered all of my topics. Is there anything else that is important to you to talk about about this stuff, or anything else that’s come to mind while we’ve been chatting?
Jillian: Just I think we just have to keep pushing ahead, creating awareness, and making it known. Stop calling it the silent sickness or the invisible sickness. Let’s make it visible. Let’s make it known. Because if it stays this way then it’s not going to get anywhere.
Brianne: Noone has any motivation to fix anything when everyone’s quiet and sleeping, which is how they feel.
Jillian: And a lot of people need to start just talking talking to their doctors more and tell their doctors what they’ve done for research and what they know. And then you’ll be surprised how doctors will, a lot of them like mine, will start asking you for answers. And not like answers they’re going to apply to anyone else. It’s always just you and him. But, you know, I gave him… I said, “I have homework for you.” And he laughed and said, “I’ve got so much.” I said, “No, you need to watch this documentary Unrest.” It’s on netflix. You have netflix, yep? I said, “Okay, watch this and you will understand a lot of what I’m going through. I’m not as severe, but you’ll understand.” He said, “Thank you. Thank you so much, I will.” He didn’t even know there was a documentary on it.
Brianne: Yeah, and this is important. There’s some books and some other documentaries that I really like as well. There’s a lyme documentary called Under Our Skin that’s… I haven’t seen Unrest yet, like I said, but it’s a similar kind of thing. It talks to patients and it follows them through a little bit of treatment. And then it talks to the doctors and goes through the problems they have treating because of the politics around it, because lyme is really politically charged for some reason. It just really captures that well.
Jillian: Yeah, the other thing is, you’re going to take your spouse with you to see Unrest, right?
Brianne: Yes.
Jillian: Okay, good, because it also goes over the caregiver’s role. So her spouse’s role. I mean, literally they get into not huge fights, but they get into some pretty harsh arguments. But how he stands by her, this guy’s incredible. He’s stood by her, he’s incredible. But he’s also connected to the media in such a huge way that that’s why they could do this documentary. But bringing awareness to the people that help you and look out for you is so important. When I looked after my mom with alzheimer’s, you can burn out, you can get to the point where you cannot do it anymore. And so it’s good that anybody that’s associated like a spouse, somebody close, or even a parent or whatever, to see that documentary and read the literature with you to understand it. To help understand. So you’ll see it in the documentary, you’ll go “Oh my god, my husband was like that, I remember him doing that. I was doing that too.” They get in a fight over mold, it’s hilarious, but you know.
Brianne: Oh, yeah. We just moved because of mold and so now we’re going through the process of throwing away or cleaning all of our stuff and he’s doing most of it because one, he has more energy than me even though I’ve been doing a lot better since we moved. And two, I shouldn’t be exposed to the stuff that was in our house before it’s cleaned, because it could make me sick again, although probably less sick. And so as I’ve been feeling better, I’m getting more relaxed about it, like, “No, I don’t think we need to be that crazy about cleaning.” And he’s like, “NO! It’s not okay. You were so paranoid before, and you’re letting it go. It’s good that you feel better, but don’t feel better to the point that you make yourself sick again, that’s not what we’re doing! We didn’t do all of this work to just get lazy at the end.” Okay, right, of course. It’s funny. But it’s a full-time project for both of you when one of you is sick and one of you is taking care of the person that’s sick.
Jillian: Oh, I absolutely agree. And I’ve seen tons of relationships end because the partner can’t deal with the sickness anymore. Because there’s so many things they have to give up too. And huge parts of what make a relationship, like intimacy and that, you read that most people with our sickness don’t have a huge intimate life. And that can make a partner wander. And a lot of us have even said, “If you find someone, we’ll let you go. We’re not going to try and keep you because it’s not fair to you.” My spouse says no, he wouldn’t do that, but…
Brianne: But it’s in your brain. When you’re going, “We’re committed or we’re married, and I’m no longer able to be in this relationship the way that I hoped to be or wanted to be.”
Jilian: Well, who wants to make somebody go through that? All the caregiving and giving up vacations or activities or whatever. I want somebody to live their life to the fullest. And like I said, I still at least have my horses. And I’ve got my little one and my grandchildren. But if you’re in a relationship and you don’t have any other hobbies or goals or anything and you go to work everyday, that gets pretty redundant.
Brianne: Yeah, it’s hard.
Jillian: A lot of people on our fibro site, that’s a common theme. Common. And I didn’t think it was until I started seeing it, and I thought “Oh, I’m not the only one that feels this way.”
Brianne: Yeah, that thinks about it this way. Definitely.
Jillian: But he says that would be unfaithful and he wouldn’t be unfaithful, so. Let’s see how long he can go through it.
Brianne: Ohhh. Yeah, you just never know. I mean, I think it’s super interesting when people are healthy and open they’re like, “You know what? We really care about each other and maybe we can’t always be everything to each other.” I don’t know. I’m sure there are lots of different examples of how people navigate that when there’s illness involved. That I’ll probably learn more about as I’m talking to more people.
Jillian: Well yeah. You don’t have children, right?
Brianne: Right.
Jillian: Are you planning to?
Brianne: It is a question right now, partly because of all of this. Because I’m just coming out of a flare right now. My sister has three kids and they’re each three years apart, so they’re all born kind of close together. And I’m very aware of how little sleep that you get at the beginning and I do actually know how much work it is. I think a lot of people don’t. They have a dream idea about it. So we both know how much work it is, and we’re just like, “This isn’t something that we could do right now.” And conceptually, I think I would like to have kids, but if if we can’t get it so that I’ll survive if I don’t sleep through the night… because every time, if I’m up all night, I do need to spend the next day in bed. And that’s not really feasible with kids. He says, “I can’t care for you and care for a baby full time.”
Jillian: Well no. And work. You know what? I would tell somebody that doesn’t have kids that has this, be very, very, very careful on choosing whether to have kids or not. Because you are not only… it doesn’t come down to whether you can care for them, they’re missing out on time, too. So honestly, when I conceived my last daughter, I didn’t think I could. But after I raised my two kids I thought, “Wow, I just got hit. This is really weird, it’s starting to hit hard. Thank god, because I’ve raised them, and they don’t need me 24/7.” And then I had my daughter who’s very needy. But the difference is I raised my first two without their father. It was just me. And now I have my spouse with me, it helps. It helps tremendously. But honestly, I would tell most people, you know what? I don’t think I’d go down… I wouldn’t go down that road again. I wouldn’t. Because you need to take care of yourself. Unless you can get a full-time nanny or something. Then you could probably do it.
Brianne: Or even just a a night nurse, so you can sleep through the night every night. The running around and the time spent, I see that too. Because in the fall, I definitely just couldn’t really play with my niece and nephews. Like, “Okay, I’ll sit here while you guys do whatever you’re doing.” But I just can’t, I can’t imagine. I sleep nine or ten hours every night right now, and I’ve been waking up pretty refreshed lately, which has been great. It has been a great mold-free change. But you know, if I stay up past 9:30 it’s not good. If I wake up and I can’t get back to sleep for a while it’s not good. You just kind of have to protect all these things. And I think about it with work, but even more so with kids. When there’s non-optional obstacles there’s only so many things you can do.
Jillian: Exactly. And I can’t say I did a lot of… with my daughter I had a nanny for the first, until she hit preschool, four years old. She was part time at four years old. So I had a lot of help. Where I didn’t have to do anything. I could just rest, so that worked out. And now she’s older and she’s more self sufficient. And you know, she can pour herself a juice or whatever. If somebody ever asked, I would say if you can’t implement that kind of a caregiver into your first four or five years, I don’t think it’s a real great idea.
Brianne: Yeah, it’ll be really hard. Yeah, that’s important to think about.
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Thank you for listening to the sixth episode of No End In Sight! I’ve got even more interviews recorded already for future episodes, so make sure you subscribe on iTunes, Google Play, or wherever you get your podcasts.
If you want to commiserate on twitter or instagram about day-to-day life with chronic illness, you can always find me @bennessb. And if you want to share your story with me, just head to noendinsight.co and click Share Your Story. I would absolutely love to hear from you!
I also recently started a Facebook Group called Chronic Hustlers, for people living with chronic conditions who are self employed. It’s pretty small right now, but I’d love it to become a place where we dig into all the questions about working and running a business while prioritizing your health.
Last thing:
This podcast is supported by my cross stitch company, Digital Artisanal. When I’m up for it, I make simple modern patterns that you’ll actually want to hang in your home. For me, cross stitch is a perfect way to occupy my mind and my eyeballs during flares when I mostly watch long tv marathons. I recently released my fall pattern collection, and I’d love it if you checked us out at digitalartisanal.com.