Hidden Battle of Fibromyalgia and M.E (FME)

追加: 2026-06-10

[00:00:07]I remember when it all started, both me and Jay got this cold.

[00:00:13]And after a few short days, Jay was back to his usual self.

[00:00:18]I, on the other hand, was still really unwell, really struggling.

[00:00:24]>> When did you first get diagnosed?

[00:00:27]>> It was over a year later.

[00:00:31]I kept going to my doctors, and they just kept sending me away.

[00:00:36]They kept saying I had post a virus and post-viral fatigue.

[00:00:42]So, I started doing my own research.

[00:00:45]Then I came across myalgic encephalomyelitis.

[00:00:55]ME.

[00:00:57]And I'm like, "That's it. That's what I've got."

[00:01:04]So, I took my research with me to my GP, and they agreed.

[00:01:13]And then, 2 years later, after going to and fro back with my doctor, because I still didn't feel right, they diagnosed me with fibromyalgia, as well.

[00:01:26]>> I think since COVID, they're more informed now, the medical profession.

[00:01:30]Came a bit late for me.

[00:01:33]When I'm at work, I see other ME/CFS sufferers. It gets me thinking about you. How are you feeling? How are you coping?

[00:01:41]>> I'm not.

[00:01:44]Just talking like this is exhausting me.

[00:01:52]Last night, for example, my wrist was in pain.

[00:01:57]I lay in bed, unable to sleep. The pain would shoot up my whole arm. It would take me ages to turn over. And then, when I was in a new position, a new pain would develop.

[00:02:10]It's often like this. I wake up exhausted. I can't remember the last time I woke up feeling refreshed or well-rested.

[00:02:20]The trouble is with fibromyalgia and any sufferer, you rarely get into deep sleep. No wonder you wake up feeling exhausted.

[00:02:31]That makes a lot of sense.

[00:02:34]Sometimes my duvet is really heavy and it hurts.

[00:02:39]I've tried So, I tried electric blankets to help with the pain.

[00:02:45]I've tried soft blankets.

[00:02:48]Sometimes it helps and sometimes it doesn't.

[00:02:52]Maybe you could try a sleep apnea machine. It's a mask that you wear. It blows air in through and then it keeps the airways open.

[00:03:02]Um lots of people find this helpful and it might even improve your sleep.

[00:03:08]I'm willing to give anything a go.

[00:03:16]Then there's the self-care.

[00:03:19]Like, for example, I had a shower and I had this pain like the top of my shoulder all the way down.

[00:03:29]It was so painful. Feels like it's in my bones almost. I know it's not. I know it's muscular, but just took so much energy to make showering so difficult.

[00:03:44]>> What have you done to it?

[00:03:46]>> Nothing. Nothing.

[00:03:49]And well, I took Oscar to the park 3 days ago.

[00:03:54]That took enough.

[00:03:56]Pushing him in the swing cuz he was like, "Mommy, play with me. Play with me."

[00:04:04]But then I guess it's just And then I'm in lots of pain. And I guess it's just how it goes sometimes.

[00:04:18]Then you've got your daily routine on top.

[00:04:23]Like you've got to get yourself to remember taking your medication, make sure you take the right amount, take the right ones at the right times, and then you've got to make sure that like you remember to do Oscar's breakfast.

[00:04:44]And make sure that he's got everything he needs. And then you spend Excuse me.

[00:04:54]Extra money on things like >> [snorts] >> pre-cut apples, filled crap pancakes, just so it's easier for you. And then they can pretty much just be given it and then they can have something to eat. But yeah.

[00:05:19]Then I've got to remember to get Oh.

[00:05:23]I say I've got to remember. I've got to will myself out of bed.

[00:05:28]I just kind of lie there and go through exactly what I've got to go and do throughout the day. I've got to get up.

[00:05:35]I've got to get dressed. I've got to brush my hair.

[00:05:41]And it's like my brain's processing it.

[00:05:46]And I should be able to do it, but my body's just not willing to.

[00:06:04]Sometimes I just can't get my body to move. Like just picking up that mug.

[00:06:13]I look at my hand, look at the task.

[00:06:16]And talk to my hand, talk to myself.

[00:06:20]Come on, you can do this. It's like my brain is telling my body but my body can't do it.

[00:06:27]Like walking sometimes, which leg should go first? I can fall down an invisible hole.

[00:06:41]Like take my bra for example.

[00:06:46]I have to get ones that are quite stretchy so that I can stand into them.

[00:06:54]Cuz I can't twist my shoulders and I can't Oh, it's the thought of having to do it up on my own.

[00:07:04]I don't have zips, I don't have buttons.

[00:07:10]Sometimes my clothes can feel okay, the next week they feel itchy and scratchy and heavy.

[00:07:21]And it's all just a bit much, like and it feels not comfortable.

[00:07:27]That sounds like the hypersensitivity.

[00:07:30]Are you like this to light and sound?

[00:07:32]Yeah, sometimes.

[00:07:35]Sometimes like just noises like they hurt my ears.

[00:07:42]And I sometimes get that with light, too.

[00:07:46]I've had to get um bifocal glasses so that they change color so that I can cope.

[00:08:03]And then there's the brain fog.

[00:08:08]The mental fatigue for remembering what you need for you, Oscar.

[00:08:16]Everything.

[00:08:19]I can forget what I'm doing halfway through a task.

[00:08:34]Then there's work at the call center.

[00:08:37]Yeah, it's hell.

[00:08:39]I'm sat in a chair.

[00:08:41]It's uncomfortable. It's not the right height for me.

[00:08:46]Uh everything about [clears throat] it.

[00:08:49]Then you've got the lights. Do you know the office ones that flicker and oh, you can't see it and it gives me a there. And then I've got this glare from the screen, the noise from the office, and the other people, the chatter. And then >> [sighs and gasps] >> then there's the headset and that's just so heavy. And then the calls on top.

[00:09:12]Talking to people and it's just too much.

[00:09:28]And the thing is, it's with like it being a call center, I'm I can't get up and take like breaks.

[00:09:37]But I feel like my body's telling me that I need.

[00:09:41]And I can't just, you know, stretch my body or do anything.

[00:09:51]And then like I go to the toilet.

[00:09:56]And like I use that for like a break.

[00:10:00]But then my boss comes over and says, "Oh, can I have a quick word?" And "You're not meeting your quota.

[00:10:08]You've got other people then you know, taking on roles and responsibilities that should be mine."

[00:10:15]So, I'm made to feel like I can't leave my desk.

[00:10:28]>> They need to understand that you've got an invisible condition. Maybe somebody could explain to them.

[00:10:34]>> Mhm.

[00:10:35]But there's so much stigma attached to ME.

[00:10:39]And they all think it's all in my head.

[00:10:42]>> It's neurological.

[00:10:44]>> Mhm.

[00:10:46]Yeah.

[00:10:47]But then they say "You look well.

[00:10:50]You must feel well."

[00:10:52]Mhm.

[00:10:53]But they have no idea.

[00:10:58]>> I think it's really hard to feel disbelieved on top of everything else that you've got going on.

[00:11:03]>> Mhm.

[00:11:05]Some days I just can't I just can't do it. I can't get out of bed. I I physically can't even get a sick note if I'm sick.

[00:11:16]That's another issue.

[00:11:19]They've already cut my hours down.

[00:11:23]But then that's benefited my, like, I guess physical health, but mental health is not so great cuz now I'm struggling to find the rent.

[00:11:38]Then there's the journey home from work.

[00:11:57]It's like sometimes it's just really, really hard and that's just as difficult. I'm like, my head hurts and I get lost sometimes.

[00:12:10]And the brain fog's just too much and then I miss my stop. I don't know where I am.

[00:12:18]And then I've been physically sick as well when I've got home.

[00:12:31]And then when I get in I just have to like go, take a breath, take a minute and like deflate and let the day off me and I need my own space. I just need to lock the door and go upstairs. I can't have anyone touch me, near me. I need to let all the noise that's been going around in my head like stop.

[00:13:05]>> That's good that you know what you want in that situation, but what do you need?

[00:13:10]>> I need to go to bed and just lie down.

[00:13:15]No noise, no nothing.

[00:13:23]Still got things to do though. Like I've still got to collect Oscar from school or his grandparents or you or him whomever's got him.

[00:13:36]And then he will undoubtedly want to do something and then like the park or something and how can I how can I I can't physically stand up let alone run around and push him on a swing or anything.

[00:13:57]And then there's still the meal to prepare for him.

[00:14:03]If I can muster the energy Well, I have to muster the energy, but then I'll sometimes just not because I just don't got the energy for me.

[00:14:18]Some days it's just all too much. Feels like my body's just been hit by a steam train.

[00:14:27]Everything is too much. I don't have the energy to pick up phone.

[00:14:34]I don't have the energy to keep my eyes open.

[00:14:38]I can't get an apple out the fruit bowl.

[00:14:42]It sounds like P.E.M. Post-exertional malaise.

[00:14:48]Yeah.

[00:14:50]Everything's everything's just too much.

[00:14:55]I can't sit.

[00:14:57]I've got to go and lie down.

[00:15:01]>> [sighs] >> It's not even like I've necessarily done anything >> [snorts] >> physical.

[00:15:09]I You know, I could have done nothing physical that day.

[00:15:17]>> [sighs] >> It could have been two, three days ago that I did something like take Oscar to the park.

[00:15:30]Just wish I could do the things I used to do.

[00:15:35]I wish I could go for a walk with the dog, go swimming, see my friends.

[00:15:41]I just can't do it.

[00:15:44]Mhm.

[00:15:46]It's times like that that I miss Joe.

[00:15:50]>> [sighs] >> Just someone else to pick up the slack and do the things I can't do.

[00:16:00]>> [sighs] >> So, you go to school, you get a job by passing your exams and develop it into an exciting career.

[00:16:12]You get some money, you buy a car, you pay rent.

[00:16:15]You find the woman of your dreams who you move into and believe you're going to live with for the rest of your life.

[00:16:20]You have a son and your career is going in an exciting direction.

[00:16:26]Then suddenly, the partner you once had is not well. She's very ill.

[00:16:31]She spends months in bed.

[00:16:34]Later comes a diagnosis of fibromyalgia.

[00:16:38]Names and words I'd never heard of are bandied around.

[00:16:41]To be honest, I was scared.

[00:16:43]I did not recognize the partner [clears throat] I once had. Her vitality and enthusiasm was gone. I felt like I was grieving for the partner that you that I used to be with.

[00:16:55]I'd get it wrong all the time.

[00:16:57]I'd try to hug her and to touch her, but she'd push me away because she couldn't cope with it.

[00:17:02]It was hard to take the rejection.

[00:17:05]There was so much she couldn't do anymore. She needed me to be there at home, but then my job required me to be there at work. After all, wasn't that what I worked for all my life through school and university?

[00:17:17]It was clear that I would have to make a choice between being a carer and a career.

[00:17:24]If I left my job after everything I'd gone through to get where I was, I knew I'd end up resenting Eloise. Some people are cut to be carers and some people aren't.

[00:17:34]I knew that I wasn't what she needed and I knew that she couldn't be the partner that I wanted her to be.

[00:17:41]So, I left.

[00:17:44]Obviously, I still contribute financially and see Oscar when I can.

[00:17:49]I love seeing him, but it's difficult.

[00:17:51]Sometimes he asks where I'm not at home and it's hard. I don't know what to say.

[00:17:57]But for me and Eloise, it's better for free to find someone else rather than to be pretend to be people that we are not.

[00:18:07]>> Did you get a break this weekend?

[00:18:09]>> No.

[00:18:11]No.

[00:18:12]Joe wasn't able to have Oscar in the end.

[00:18:15]>> [snorts] >> So, he was at home with me.

[00:18:19]>> Oh, that's a shame.

[00:18:21]>> Yeah.

[00:18:24]And I feel so guilty cuz I should feel pleased to spend time with Oscar.

[00:18:33]But I really needed Joe to just prioritize Oscar and have him.

[00:18:44]Like I needed the break. I needed to recharge.

[00:18:48]>> Of course you Of course you do. How was Oscar about it?

[00:18:53]>> Um >> [snorts] >> Yeah, he was um he he was sad, but he was okay about it.

[00:19:06]I don't know if it's cuz he's used to it. I don't know.

[00:19:10]It's good for him to see Joe and Joe's family and you know, get to be a kid.

[00:19:19]Cuz even if Joe's working from home, Oscar doesn't have to worry about him.

[00:19:30]>> [snorts] >> And he does when he's at home with me. He doesn't get that to be a kid, I guess. But >> [clears throat] >> he reminds me about taking my medication.

[00:19:47]He helps around the house.

[00:19:51]>> [snorts] >> He'll lie down with me when I'm at my lowest and he's an angel, really.

[00:20:03]He's getting into trouble at school.

[00:20:06]It's not his fault.

[00:20:07]>> [snorts] >> Cuz he's being late and he's not doing his homework cuz I can't help him with it. I physically mentally cannot do it.

[00:20:20]And then there's after school clubs I can't get him there.

[00:20:28]>> [snorts] >> And I can't afford it.

[00:20:31]Thank you.

[00:20:33]And so, I just really feel like he's missing out on his childhood by >> [snorts] >> having me as as his mum because he [snorts] doesn't get to do the things that normal children his age would do it.

[00:20:53]And I just feel [snorts] like I've been dumped on him and I'm not the mummy that he deserves or should have.

[00:21:04]>> You could always ask me. My Nick love spending time with Oscar.

[00:21:08]>> [snorts] >> I know.

[00:21:10]I know I could, but I can't ask you all the time, can I?

[00:21:15]I just want to be the mom Oscar deserves.

[00:21:21]You know?

[00:21:23]It's like I'm grieving for the person I used to be, and I'm also grieving the motherhood that I'm not going to get.

[00:21:36]Neither is he.

[00:21:39]Could your family get more involved?

[00:21:44]My mom helps when she can. I mean >> [snorts] >> they're in their 80s, so I can't really ask them to do too much.

[00:21:56]Well, I think what would really help is going to a Bristol Fibromyalgia ME CFS support group.

[00:22:03]I think they could talk to work, put things in place for you. They might even [snorts] be able to help you with benefits that you can claim.

[00:22:11]They could also speak to Oscar's school, put support in place for him.

[00:22:16]Um possibly get in touch with Bristol Young Carers Support. I'm sure they could help Oscar.

[00:22:23]>> [snorts] >> Thank you for offering to take me to a group.

[00:22:29]>> [snorts] >> Sounds like it could be really useful.

[00:22:32]I mean to have somebody help with the mental load, being able to signpost, or you know, advise me of what groups could possibly other groups could help me, maybe, cuz sounds like they'd be good for that.

[00:22:52]Means I don't have to try and look at it on my own and get overwhelmed and fatigued. So, yeah, the group sounds is a really good place to start for signposting and some help, maybe.

[00:23:32]>> Does anybody have any questions?

[00:23:38]>> Hi, I'm Shaz.

[00:23:39]>> I'm Elsa, and >> This is Eloise.

[00:23:42]>> Hi.

[00:23:43]>> Nice to meet you.

[00:23:44]>> And thank you so much for coming.

[00:23:46]>> Thank you.

[00:23:51]>> So, welcome to Bristol One World Academy Primary School.

[00:23:56]Have you got any thoughts?

[00:23:58]>> No.

[00:23:58]>> The school The after school club.

[00:24:02]>> The after school >> Yeah, until >> James has got >> everything sorted at work, [music] IE >> The desk is on the first floor.

[00:24:13]>> I'm on the desk riser and I might need software.

[00:24:17]>> That that's where I need more training.

[00:24:20]>> And they will get me school more sleep.

[00:24:22]>> Okay, guys. Thanks Thanks for doing the breakout group. So, I'm just wondering if what which group would like to feed back first? We don't mind.

[00:24:30]>> Oops. Sorry.

[00:24:32]>> Yeah. So, what was your What was your >> Ours was um school and what support Eloise and Oscar can get >> Okay.

[00:24:41]>> from the school. Um We first started off with like um breakfast club, free school meals, after school club. And then in with the after school club, she might not um Oscar might not be able to have the the transport home. So, then Eloise would have to like rely on friends, maybe friends' support you to bring him bring him home or family.

[00:25:11]>> Or family, yeah.

[00:25:12]>> Yeah. Um So, there's support with um transfers to school.

[00:25:20]Um maybe >> Eloise and myself are in the work group with some others.

[00:25:26]Um and it's the Equality Act 2010, section 20, for reasonable adjustments.

[00:25:33]And the group has come up with altered reduced hours, working from home, more regular breaks, time off for medical appointments, and to come to support groups.

[00:25:45]The DSE, which is display screen equipment, which is things that can be adjusted in the workplace for Eloise.

[00:25:55]Regular reviews for other management support and disabled access requirements.

[00:26:01]>> Just to round up the group and then uh before we say our goodbyes, we're going to do our um booster affirmation cards.

[00:26:08]So, if you would like to choose between you've got this, stress less, gratitude, or positive thought cards.

[00:26:24]>> Walk as if you are kissing the earth with your feet.

[00:26:29]>> Enjoy the little things for one day.

[00:26:33]You may look back and realize they were the big things.

[00:26:51]>> Take a deep breath. It's just a bad day, not a bad life.

[00:27:03]>> Forgiveness of myself and others releases me from the past. Forgiveness is a gift to myself. I forgive and I set myself >> There are flowers everywhere for those who want to see them.

[00:27:20]>> Being happy doesn't mean being perfect.

[00:27:24]>> Congratulate yourself on every accomplishment. A small step in the right direction is still a step in the right direction.

[00:27:32]>> Don't be afraid to reach out for help.

[00:27:34]Remember it is okay to ask for professional help.

[00:27:39]>> I release all fears and doubts.

[00:27:44]So this is this is some of the stuff that we do at group. So we on an educational level we look at how we can manage our fibromyalgia and our MECFS.

[00:27:56]So this is when we were doing a mindfulness course.

[00:27:59]And because mindfulness actually helps helps to manage the brain fog, but it also helps you to manage your energy levels as well. So we kind of talk about it in in the idealism of spoon energy. So you have 12 spoons a day and once those spoons are spent you then are borrowing your spoons from other days. So you say if you do a high intensity activity on one day you could be borrowing spoons from three or four days in the future. So it's kind of being So it's learning to be mindful not to be spending your energy and running your energy battery low.

[00:28:46]>> Okay.

[00:28:47]>> Okay.

[00:28:48]>> The benefit of the group isn't just about all the information I've been given and the understanding of everyone and others.

[00:28:57]It's just being with other people who share the same experiences.

[00:29:03]You know, they go through the same things and they understand.

[00:29:08]Helps me feel better about myself, the things I can and can't do.

[00:29:15]I feel supported and I feel held.

[00:29:29]>> [music] [music] [music] [music]