The Sunflower Conversations

Either Off or On - living with Fibromyalgia

June 07, 2021 Hidden Disabilities Sunflower
The Sunflower Conversations
Either Off or On - living with Fibromyalgia
Chapters
The Sunflower Conversations
Either Off or On - living with Fibromyalgia
Jun 07, 2021
Hidden Disabilities Sunflower

In this Sunflower Conversation, Paul Pengelly discusses how fibromyalgia impacts his physical and mental health. 

It took almost three years for Paul to be diagnosed and his acceptance of his condition has been key to making adjustments, from pacing his life to using a scooter as well as making useful changes to his home environment. 

We talk about how fibromyalgia is intrinsically linked to his mental health and that this has progressed in line with his condition. In Paul’s own words “I’m either off or on … there’s no in-between.” 

Paul is a Sunflower Champion and has been a Sunflower wearer and advocate for the last few years. He is an admin of the Sunflower Lanyard Advocacy group on Facebook, one the Sunflower Support groups  that highlights the use of the Sunflower lanyard for non-visible disabilities.

The NHS advises that if you think you have fibromyalgia to visit your GP. 

To find out more about fibromyalgia, check out Fibromyalgia Action UK, a charity that offers information and support to people with fibromyalgia.  You can also call the charity's helpline on 0300 999 3333.

Hosted by Paul Shriever and Chantal Boyle, Hidden Disabilities Sunflower.

Show Notes Transcript

In this Sunflower Conversation, Paul Pengelly discusses how fibromyalgia impacts his physical and mental health. 

It took almost three years for Paul to be diagnosed and his acceptance of his condition has been key to making adjustments, from pacing his life to using a scooter as well as making useful changes to his home environment. 

We talk about how fibromyalgia is intrinsically linked to his mental health and that this has progressed in line with his condition. In Paul’s own words “I’m either off or on … there’s no in-between.” 

Paul is a Sunflower Champion and has been a Sunflower wearer and advocate for the last few years. He is an admin of the Sunflower Lanyard Advocacy group on Facebook, one the Sunflower Support groups  that highlights the use of the Sunflower lanyard for non-visible disabilities.

The NHS advises that if you think you have fibromyalgia to visit your GP. 

To find out more about fibromyalgia, check out Fibromyalgia Action UK, a charity that offers information and support to people with fibromyalgia.  You can also call the charity's helpline on 0300 999 3333.

Hosted by Paul Shriever and Chantal Boyle, Hidden Disabilities Sunflower.

Paul Shriever:

Hi, I'm Paul. Also, with me today is Chantal. How're you doing, Chantal?

Chantal Boyle:

I'm very well, thanks, Paul. How are you?

Paul Shriever:

Very well, thank you. Today, we're going to be talking to Paul Pengelley. Paul is a Sunflower Champion, and also joins us. Can you please introduce yourself?

Paul Pengelly:

My name's Paul. I'm from Nottinghamshire. I've been involved in the Sunflower lanyard for a few years now.

Paul Shriever:

What are your health conditions? Can you tell us a little bit about that, if that's possible, please?

Paul Pengelly:

My mental health started first, maybe about 15 years ago. I started with depression, anxiety. Then not long after my marriage ended I got fibromyalgia, which could have been caused by the depression. The fibromyalgia has, with me at least, progressed, although it's not a progressive illness. It affects everybody so differently. But the fibromyalgia causes physical problems and that means my mobility has suffered. That has only got worse over the years. Then, of course, your mental health follows that same path, because I think we'd all be upset if we were in a lot of pain every single day, 24 hours a day. Medication can only do so much. It takes the edge off, but it can't take it away.

Paul Pengelly:

I have outbursts. I have been diagnosed with antisocial aggressive borderline personality disorder. That has meant that I can get to the point where, I wouldn't say snap, but I have a rant or I drop things and I'm very, very clumsy. Fibromyalgia causes your dexterity to be affected because the nerve endings in the fingers, things are permanently tingling, and it causes that to be affected. That can be a difficulty when you're out trying to go to shops and things. But, yeah, it has caused me to have outbursts. Or I just melt down, and I think you witnessed that this morning a little bit. I don't deal very well with a situation, and then I get everything wrong and it just gets worse. But you have to accept that that has happened. I've had 12 years of therapy, cognitive behavioral therapy, and that has helped, but it's only putting out fires, really.

Chantal Boyle:

That's what I was going to ask. Have you developed coping strategies to help you navigate all these challenges that you face? Presumably, therapy is one of the strategies that you've employed?

Paul Pengelly:

Yes. Mindfulness and various other coping strategies straight out of the textbook, but you can't always put them into place. So it's a bit like putting your hands out when you fall over. Sometimes you remember, sometimes you hit your head. The worst thing for me, and the reason I joined the Sunflower campaign is because the bit you can't see is the effect that my physical health has on my mental health. I've developed quite severe mental health issues over the last few years, and they're the things that cause me the most difficulty interacting with other people.

Paul Shriever:

Thank you for sharing that with us. I mean, that sounds, to me, like it's quite challenging, and it also, one very much impacts the other.

Paul Pengelly:

Absolutely, yeah. They're intrinsically linked. I mean, again, imagine having toothache for a week and then a month. After that, you'd probably start to get quite annoyed and wish it would go away. Of course, the worse it is and the more you have to give up. Over the years, I've given up being able to walk out and about. I've given up being able to go on the beach at all because you can't get a wheelchair that goes on sand, and I have real difficulty walking on. I try. I get on the edge of the beach. That's about as far as I go. But, yeah, so there's a lot of things that you give up when you become physically disabled, and that has an impact because it's something else you can't do.

Paul Shriever:

Yeah. Paul, can you explain, please, what exactly is fibromyalgia?

Paul Pengelly:

In essence, it is an unknown quantity. It is a nervous system condition. Your brain thinks there's pain somewhere, and therefore, there is. You may be holding your mobile phone. You may be sitting just like this. Standing, sitting, lying down, anything can hurt for any reason. But it affects all four quarters of your body, so left, right, top and bottom. So it could be your shoulders, your back, your arms, your hands, your fingers, your feet, your legs. So it's not like I can't walk very easily, therefore, sitting down solves the problem because that just causes me another problem. So it's probably the worst of the conditions, at least for me. I mean, obviously, we all deal with things completely differently.

Paul Shriever:

Was it something that was diagnosed, your fibromyalgia? When did that happen?

Paul Pengelly:

The diagnosis was probably around 13 years ago. But it takes about two years to get diagnosed because, of course, they're ruling out all of the other possibilities, maybe some nerve damage, or maybe a spinal problem, or ME, or arthritis. But because there are so many symptoms with fibromyalgia, I mean, the list is pages long, and it is very difficult to diagnose.

Paul Shriever:

Is it something that has got progressively worse over time?

Paul Pengelly:

For me, yes. It isn't for everybody. So there are some people with fibromyalgia that can work on a building site and then just have one week every month where they're flat on their back. For some others, it's mild and it doesn't really get any worse, and you can overcome it if you're strong enough, but you can't get rid of it. It doesn't seem to go away, but it's not actually a progressive illness. But for me, it has just got worse and worse and worse.

Paul Shriever:

Okay. Is it something that can get better? Can it be cured, or is it something you live with for life?

Paul Pengelly:

There is no cure. Most people live with it for life, and it's about how quickly and easily you make your adjustments and accept what you can and cannot do that you tend to get the best that you can out of life. Yeah. It's difficult but not impossible. But you can't get better from it, really.

Paul Shriever:

Can I just ask you about how you manage your pain?

Paul Pengelly:

Lots of medication. I take a varying amount of medication of different strengths. There's some very, very strong ones. The rest of it is down to pacing. So for example, if I go on holiday, I can't go for two days because by the time I get there I'm tired from the journey, and so the next day I'm wiped out. So you have to plan one day on, one day off. You can probably hear by the fact that I make a lot of stilted breath noises that that's me holding back twinges of pain, and it's just tenacity after that.

Chantal Boyle:

Having to have adjusted your life to this pacing now, where you've got to factor in basically so much more time into any activity that you want to do.

Paul Pengelly:

Acceptance is one of the things I would advise a lot of people to look at when they have physical or mental health issues. Acceptance is the key to finding the road to recovery as it is with addictions and things like that, accepting that this is it, what are you going to do about it? So you can either grin and bear it and try and improve it, make plans that are different, or you can allow yourself to wallow in it. It is very difficult on the many days when I shut the doors and windows and don't let anybody in. And there are many other days when I think, "Right. I need to do something and get out." So hence getting Pip, it was forcing me to look after something and do something.

Chantal Boyle:

I know you have a dog. So can you tell us a little bit about your dog?

Paul Pengelly:

Well, I've got my dog, Pip. I've had her for six years now. Really, I got her as, I suppose, a comfort blanket, a support dog. She's a lovely six year old Shih Tzu, and she's a great comfort to me. One of the main reasons I get out the house, if at all, is because of her.

Chantal Boyle:

They are man's best friend, aren't they?

Paul Pengelly:

This man's particularly, yes.

Chantal Boyle:

You are listening to The Sunflower Conversations with Paul and Chantal. To share your story, details are in the show notes. You've mentioned that your fibromyalgia and your mental health are intrinsically linked. What impact has that had over the course of the last 15 years, I guess, with regards to sort of relationships and your job, home life?

Paul Pengelly:

Well, one of the first things I lost was my marriage, second was my job, and then more and more things followed.

Paul Shriever:

One of the things that interests me is, is it something that has evolved and got worse with time, your mental state? And by that I mean your depression or your anxiety. Or is it something that was triggered like a switch? Because it's something that I, just personally, something that I've had a few type things in my life, throughout my life, where I've had one big thing that has really, almost like a switch, affected me and made me go, "Oh my God." Then I've had to spend months after that trying to deal with that.

Paul Pengelly:

For me, the triggers are instant. I get to the point where I'm overloaded and then that is it. I'm not grappling to get back up the cliff. I'm literally on an edge and I'm either off or I'm on. I go good or off. There's no sort of-

Paul Shriever:

In between.

Paul Pengelly:

... slope. There's no in between. But in terms of actually developing mental health, it came on fairly suddenly, but that was because of an event when I was 40. It came on fairly suddenly, but it definitely has changed and developed as my fibromyalgia has gotten worse because each kick in the teeth makes it more difficult to cope with that and what you had before. It's just piling up. One step forward, two steps back is a phrase that springs to mind. Your ability to cope changes. So, of course, you cope better as you get used to it and you understand it, but that means you've just really not really kicked the problem. You're just coping slightly better with it. But then when something else comes along, you've got to cope with that as well. So it's that constant struggle to cope.

Paul Shriever:

Is it something that can suddenly happen in the day that could perhaps just trip you a bit or make you slip back a bit? So it could be that you're in a situation or something has happened and it's just made you go, "Ugh."

Paul Pengelly:

Yeah. I call it the goldfish bowl syndrome, where, all of a sudden, you feel like you're the one that's in the way making a mistake. You blame yourself a lot when you have genuine anxiety and depression. You tend to blame yourself, you kick yourself for everything. There's two types of depressive episode for me. One is the instant where, for example, you might be in a shopping queue and somebody does something, or you've dropped something, or it could be that that sets it off. It could be instant. But then there's the post-mortem at the end of the day that you go through in your mind in the middle of the night when you're awake with pain, and that can be the most destructive. I won't go into any detail, but it can be the most destructive. It causes me to do things that I'm not proud of. I think for many people, the middle of the night is the most depressive time. But the actual episodes can happen very instantly, and they're always triggered.

Paul Shriever:

Yeah. That's fascinating to hear and really interesting. Thank you. You are listening to The Sunflower Conversations with Paul and Chantal. To learn more about the topics covered in today's podcast, details are in the show notes. Can I ask you about the obvious physical disability now? It's one thing to have something that's hidden, but it's also another step to have something that is visible. How have you dealt with that?

Paul Pengelly:

Well, I mean, I know a lot of people who say, "I'm only 50. I don't need a scooter," "I'm only 65. I don't need a scooter." But they are struggling to walk even a few paces, and they're sitting on benches, and they're holding their backs. Why not get one? I took maybe three years to get to the point where I accepted that I might need one. I used them in supermarkets because they were there, and it was easier because I definitely couldn't walk around the shop. But I grunted my way around many a shopping aisle before then for two or three years, not wanting to give up because I didn't want to give up something else.

Paul Pengelly:

But a lot of people who could benefit massively from using a scooter even occasionally don't get them because they feel ashamed. There's a lot to it, but I did find that once I got one, people saw me as disabled, and they would say, "Would you like me to get that off the shelf for you?" Whereas, in actual fact, the mental health was causing me more trouble. But that sort of chair, if you want to call it that, that and the walking stick, that gives you more credence. Accepting that you need to use those things is difficult when you're younger, and I'm obviously only 25, when you're younger, and a lot of people find that very difficult, me included. But eventually, when you do come to terms with it, again, acceptance, when you come to terms with it, it's the best thing I ever did.

Paul Shriever:

What adjustments have you had to make? And I mean that both physically as well as what's actually happened around your home, for example? Have you had to have to stuff modified and changed?

Paul Pengelly:

Yeah. No, I've had a Disabled Facilities Grant, which I urge everybody to look at if they've got genuine mobility problems, because there is help out there.

Paul Shriever:

What's that, Paul? What's that?

Paul Pengelly:

The Disabled Facilities Grant. It doesn't matter whether you're a renter, an owner, it doesn't matter. It is means tested. Of course, when you end up on your own without a job, relying on benefits, there's not much means to test. I've had a stairlift put in, and I've had a converted bathroom. So, yeah, those have both had to be done. And other things, when you're buying furniture you need to be considerate of whether or not it's useful to you. So I have to have a recliner sofa, not because I'm lazy, but because I have to change position regularly, and that ability to do that without making too much effort, or even to help you stand up. So those kind of things you have to think about quite a lot. I've moved from an upstairs apartment to a house, and that allowed me to sleep downstairs and have the downstairs loo. Then when the house was converted, of course, I can now use the whole house, and I don't need anyone else there to let me get upstairs to bed. I just need help with getting dressed and getting showered and things.

Paul Shriever:

Is there a condition that is harder to live with, in your opinion? Is it mental health or is it fibromyalgia?

Paul Pengelly:

The mental health, without a shadow of a doubt. The mental health causes me to dislike myself more than the physical problems. The physical problems, if I'm on my scooter and I drop a pickle jar, the manager isn't going to make me pay for it. But if I get angry with myself and start to try and put things in my basket and I miss it because I'm getting frustrated, then I might end up paying for it, and there's quite a difference. So I think that, again, the physical health, it's overcoming those obstacles, so getting a hoist, getting a stairlift, getting an adapted bathroom. It's just about overcoming those obstacles. But overcoming mental health is a lot more difficult. And I suppose anybody with any kind of addictions, they'll find those difficult to kick, whether it's smoking, drinking, or other things. Anybody with a psychotic problem. And, of course, there are some illnesses that you just cannot get over because it's hardwired into you. As I say, I've got some very strict guidelines for my life, and I just can't help doing them because it's not something I can control. It is part of me.

Chantal Boyle:

You are listening to The Sunflower Conversations with Paul and Chantal. To learn more about the topics covered in today's podcast, details are in the show notes. You are a Sunflower Champion, like in the truest sense. Can you tell us a bit more about what you do and why you do it?

Paul Pengelly:

Okay. I mean, I look for ways to get involved with it because I benefited from it quite some time ago. I found a couple of groups on Facebook, a lady called Amanda Hall, and she's a champion of the Sunflower lanyard. She allowed me to become an admin as part of the group, and we're now up to around six and a half, 7,000 people. But all the groups support each other. Admins tend to be friends with each other because we all have one common goal, and that is to create, maintain, and increase the access and accessibility for people with hidden disabilities as much as those with physical ones.

Chantal Boyle:

How does it make you actually feel when you are wearing it?

Paul Pengelly:

Justified. It means that I might get acceptance and I might get help, and if I ask for help, people are more willing to give help. Even if I've gone just a few paces to the door of a shop and said, "Excuse me, I just need you to go and look for these deck chairs," in the middle of the aisle of a well-known supermarket, and they will more gladly do it when I'm wearing this or when I'm with a stick or scooter. But even without those things, this can get you that little bit of help, because somebody's asking for help, they probably do need it.

Paul Shriever:

Do people in shops now and places, do they see it now and know what it is?

Paul Pengelly:

Yes, but not necessarily for the right reasons. And because we've had furloughed staff, shop closures, et cetera, a lot of the training that went before the shutdown in March last year, a lot of the training that went into staff, of course, the attrition rates of staff is quite high generally anyway in many places, and of course, a lot of that training has been lost. I think most people do look at it as a mask exemption thing, and I know that there are people that take advantage of it. But even if it's 10%, it's still 90% of the millions of Sunflower wearers that are still getting help. Yes, it's recognized, not always for the right reasons, but it's up to us to put it right.

Paul Shriever:

Do you think that the Sunflower is needed in society?

Paul Pengelly:

Yes, without a shadow of a doubt. There's been far too long that people with what you might call hidden illnesses, difficulties, and disabilities, either, A, can't get a diagnosis. It took me close on three years, remember, to get my diagnosis for my physical health, and that affected my life greatly in the beginning, because, of course, you can't get those services that you need because it's not a diagnosed condition. There's lots of people with undiagnosed conditions, wrongly diagnosed or wrongly dismissed, and there's equally as the Blue Badge rule changed 18 months ago to allow people with hidden disabilities. That's because it is just as discriminatory to ignore them as it is to ignore people with physical access problems, because it does become a physical barrier.

Chantal Boyle:

So do you have any advice or coping mechanisms for anyone finding themselves in your position with similar health conditions?

Paul Pengelly:

Don't be ashamed, don't be afraid to accept, and don't be afraid to ask for help. Don't expect it to come to you. There are occasions when you do have to ask. People are very busy in their jobs and they are trying their best. Customer service is still here in Britain, whether we sometimes don't experience it all the time, but it does exist. I've had many, many kindnesses. Again, there's support out there if you're willing to accept and to challenge doctors, get your diagnosis, and push forward. It is extremely hard. I can do it for other people, cannot do it for myself, and people find that difficult to believe. But, yeah, it's tenacity, perseverance, acceptance, and asking.

Chantal Boyle:

Thank you for sharing your story with us and sharing your advice. I think one of the key takeaways for me is that you said acceptance is the road to recovery. So thank you. I just want to finish off with saying, if you feel that you have any one of the symptoms discussed in today's podcast, please contact your GP. And for further information about fibromyalgia, please contact the Fibromyalgia Action UK group. The full address will be in the notes of today's podcast.