This week I’m interviewing Fibro Warrior, Andy Williams from Fareham, Hampshire, UK. He is 40 years old, married, with three children. He has a passion for sports (especially football, aka soccer). He was diagnosed with Fibromyalgia in May 2012, at the age of 38.
I’ve been married for 7 years, and we have three children. I work as a Digital Marketing Manager at a leading digital marketing agency. By background is in Search Engine Optimization.When it got to the point where the youngsters were speeding past me on the field I turned to running which was always my second sport. I now run as often as I can, entering what races I can. I tend to go for longer distances. I also have a past in comedy, including a dabbling in stand-up comedy.
What lead up to your diagnosis (symptoms, dr visits, etc)?
I have always suffered from bad headaches and migraines, ever since I was around 14. Doctors had never really helped, one even telling me I suffered because I was ginger -“they get headaches”. But I hadn’t really suffered any other symptoms.
I then started suffering during early 2012 from what I thought was the flu but I wasn’t feeling ill, just the aches, pains and feeling run down. After a month it was still there and getting to the point where I was walking around like a 90 year old. Something was clearly wrong. So I went to the doctors. Initially I was told I have a virus but of course the symptoms didn’t fade.
I then started the process I am sure all sufferers have been through. All the tests, all the scans, all the blood tests and so it went on. However, throughout the whole process at no time was I given any indication as to what they were testing for which became beyond scary. The MRI scan on my brain was a particular low point as I didn’t know what on earth was going on.
I was then finally sent a letter after months of tests that diagnosed me with Fibromyalgia. I had no idea what on earth this was. I had never heard of it before.
Related: Common Symptoms & Signs of Fibromyalgia
What was your life like at the time?
I was married and work was full on. Life was full on, stressful but it was happy. We had a young family and every day was bringing something new. We had two toddlers, one was three and one was two so we had our hands more than full. I was trying to keep my hand in on the comedy side where possible and, of course, running as much as I could. Life was pretty fast paced.
How did your family initially handle your illness?
Considering how quickly I had gone downhill we were all just relieved that we had an answer. Going from “normal” to being in pain, to worrying what on earth all the tests were looking for, to being unable to handle the kids playing with me was hard on everyone. So getting an answer, even if we had just been left with an answer and no explanation, we were just glad we had got somewhere. Reading that there was no cure was rough; but, knowing what this was allowed us to sit down and say “ok what do we need to do then”. That was important.
The guilt.Coping with the pain and all the side effects is something I have personal control of. If I have a bad day then that is something I either cope with or I don’t.But I struggle with not always being the person I used to be. I’m aware that I have bad days and I am aware that there are days I don’t cope with this too well. I’m aware than there are now things I would love to do that I can’t. Days when I can’t be as active with my kids as I would love to me. Days when I can’t even pick them up. I’m aware that I can’t always be the man my wife married. And I feel guilty about it.
I struggle with not always being the person I used to be. via @runningFibro Share on X
The mental side of things is something no one ever tells you about. Most of what you read is centered around the symptoms and never about the emotional side of coping and it can really kick you. It can send you to low places and it can make you feel guilty that you aren’t giving the best of you to those you love. Personally I don’t cope too well with this at times.
Headaches and migraines are something I have always suffered from. I wake most days with one. The extent of how bad it is varies each day. Some days I can shift it within a couple of hours, other days I wake knowing it’s going to be resident for 3 to 4 days.Fatigue is prominent and can really hit me. I never get any warning signs with this either.My body also now has real trouble controlling its internal thermostat. I wake at night soaking at times for no reason. And then I can feel the cold like never before.
My memory can have off days now, as well, which drives me mad. The Fibro Fog really can set in some days and it can send you loopy. It feels like you are in a dream and you have to focus twice as hard.
IBS makes an appearance quite a bit as well.
To date I haven’t found anything at all that helps the symptoms. Drugs dull the pain but never remove it. But I do run. It doesn’t improve the symptoms but it does make my body feel differently. Feeling flexible and fit does make things feel better. One symptom it does help with is the limping, being more flexible means although I hurt I’m not doing the old man walk.Get active.
Running keeps me flexible and helps me feel better. via @runningFibro Share on X
My wife has supported me from the start and has read up on the illness, so she knows all about it. I think beyond that I keep it to myself. I’m open with family and friends about what I have but I try to keep the extent of the pain I feel very much to myself. Beyond the fact that I am in pain, I don’t share the other symptoms that come with it.I don’t want it to affect my normal life. I don’t want it to affect my working life. If I can get through a day then no one needs to know how bad the pain is. I also don’t want to be defined by my illness in a negative way. I struggle with not always being the person I used to be. I don’t want to be known as that bloke who is ill with that fibro thing that no one has ever heard of.I don’t want to be known as that bloke who is ill with that fibro thing. via @RunningFibro Share on X
I’m also more private than people close to me possibly realise and I think this can be a very private illness at times. Trying to describe what you are going through while this is effectively an invisible illness is hard. There are times I should ask for help when I don’t but it’s more about me trying to remain “normal”.
Fibro Warrior: Andy – Running With Fibromyalgia Share on XAs it happens I am just starting a new site – www.runningwithfibro.comIn September 2015 I am signed up to run a 100k run. Yeah I know and I am sure everyone else thinks the same thing. The thing is the only thing I have found that does anything to ease living with Fibromyalgia is running. It doesn’t relieve any of the pain or any of the side effects but it does keep me being “me”.
I have always been sporty and I am competitive and my edge has been totally taken away from me but it doesn’t take away my state of mind – which is to compete. By running I keep that section of my brain sane. It hurts when I run, it’s a fight getting my trainers on and getting out of the door but I tell you what, when I have completed a run, I have beaten Fibro one more time.So here I am with this 100k run which I will be doing for a charity close to the family’s heart. I had always planned to start a site and write a blog about coping with Fibro and this felt like the perfect time to start. I want it to be honest and I want it to help others. I know I am in a position that others aren’t. I am still running. Others can’t. If I can inspire others to try then how cool would that be.
Follow @RunningFibro one man's fight to beat Fibro one run at at time. www.runningwithfibro.com Share on XUse it or lose it. By staying active I have given myself a better chance of being able to continue running. As I have said, running doesn’t relieve any of the pain (and at times it makes it a whole lot worse) but trust me, that feeling of being fit or more flexible seriously does make a difference. Being able to walk without a limp because I have kept myself active allows me to hide my symptoms. To me personally that is very important.Being able to feel like you are doing something that is “you” helps with everything else.feeling like you are doing something that is “you” helps with everything else. via @RunningFibro Share on X
Remaining active goes against everything your body is saying to you. It’s hitting you hard and trying to stop you. Being active keeps you one step ahead. Do whatever you can, when you can. It is so important. Make the time. Do it. Yes it will hurt but you can do it.
This is a tricky one. The natural thing to do when you get diagnosed is to “find the cure”. Diet came up more and more each time I went online. I followed a diet that had “cured” someone and it changed my entire way of eating. It was based on minimizing crystals that are present in your joints. It didn’t work. I stayed on it for a year. It got to the point where I had no idea if I was better and fending off worse pain or whether I was just creating a tricky diet for no reason.I came off of it and nothing changed. The diet hadn’t helped and hadn’t changed anything.Diet is important, you really do need to try and eat healthy to give your body the best ammo it can to help you but that is all. Just be healthy. I was making myself more miserable for no reason. I am sure there are cases where people have changed their diet and have noticed a big difference and I would never discourage anyone from trying anything that may work for them but for me going a whole year of cutting out foods that were healthy on the back of a “fad” diet was in hindsight, silly. I became obsessed and scared that food could poison me. This isn’t the case guys. Don’t do it.
Being with my wife and kids does more than I can say, but running is that slice of my mentality that also makes me feel normal. It gives me that moment of that previous life I had when I could be as sporty as I wanted. Remaining at work also means I keep coping with it and not losing to it.
Related: What’s your favorite way of coping with life as a spoonie?
Running allows me to feel normal again. via @RunningFibro Share on XMy family. My wife and kids. I want to be normal for them. I want to be the husband my wife married and I want to be the father my kids deserve. Too often I feel guilty that I’m no longer able to be who I was or who I think I am. So I strive to be the best I can while I cope with this. I get it wrong a huge amount of the time. Pain can drive you insane and suddenly things make you react when a reaction shouldn’t even be in the equation. So I try to learn from it. For them and for me.And you know what; my competitive side is also taking this illness on. Can I run it away? I know the answer is no, but what if it isn’t. What if running further and further, faster and faster does make a difference. What if that state of mind wins? What if?I potentially have this now for around 40 odd years, something has to beat it. My competitive side is also taking this illness on - via @RunningFibro Share on X
That I can cope with more than I realized. I have been to some dark places while trying to cope with this illness and I have tried to cope alone. That hasn’t always been the best option but it’s what I do and it’s how I have always been. But each time I “come back” I come back stronger.I have started saying Never Give Up to myself, a lot.A doctor once tried to explain to me how this can affect you.
“Ask someone to cope with a pain that scores 8 for a few days, they could but most would complain. Now bring that down to a 3 and most would cope without any issue. But if you have to cope with that 3 every single day and it will slowly drive you insane. The reality is that a Fibro sufferer will have to cope with an 8 all too often. So if that 3 is enough to drive you insane, coping with a daily 8 is something most won’t even believe you are coping with – but that is your reality”.
Related: 10 Things People With Fibromyalgia Need to Know
Never Give Up. For every day you get through you have beaten #Fibro one more time. via @RunningFibro Share on XI know that many people reading this are wondering how the heck you keep running despite the pain it might cause, what’s your answer?
Yeah the running thing does raise loads of questions with people who know me. How can I be so ill if I am still running. I think I’m still able to do it because I didn’t pause or stop at any point. I ran through it almost.
Had I given up running for a bit then I don’t think I would be in the situation I am in now where I can still run. When I go a month without a run its the scariest thing ever getting my trainers back on and going out the door because the pain is so scary. But once I get that first one back out the way my brain kind of goes back to that place where I know what pain is coming and I can “cope”.
I always make sure I run the distance any race requires as part of my training (for example if I enter a half marathon, I make sure I have run that distance at least once in training) so that I know what pain is coming. If I can’t cope with it then I don’t do the race; but, knowing the pain allows me to cope with it.
It lets me start a race with the train of thought – “ok you know now much this one hurts, you know when the pain kicks in and you know when the pain reaches it’s height, you know it all. None of this will be a surprise, you have a choice, you either run through it again or you walk away – if you walk away you will regret it. Be strong. The pain can’t injure you but the Personal Best time will stay with you forever”.
It’s just my mindset. Everyone is different. Had I tried to take up running as a result of the Fibro (over already being a runner) then it would have been a different story.
This week for example, I have struggled and my legs have fought me and it has got me down. It scares me. I get scared this may be the time the Fibro wins and my body moves on to some kind of next stage where I have to give up the running. So every run, any run, any walk, anything normal keeps me winning and keeps me being me.
Man it is such a fight isn’t it. Anyone who can stay sane is amazing in my eyes. This is hell. An invisible hell. If we can cope with this we are stronger than we ever give ourselves credit for.
Be sure to connect with Andy on Twitter @RunningFibro, and Facebook, and follow his journey through his new blog – Running with Fibromyalgia
More Fibro Warrior Interviews:
- Fibro Warrior: Gary
- Fibro Warrior: Leo aka @fibro_boy
- Fibro Warrior: Richard Gerome
- Fibro Warrior: Douglas
Jag says
Really interesting article & really inspiring. Keep up good work Andy 🙂
Jackie says
I so loved this! I love to run and especially in the past few months, if I don’t run, I can’t walk. I need to run at least once a week or I’m hobbling and my legs are weak. So nice to find someone else that gets it! People look at me weird too when I run dispite the fibro. Hey whatever works
Julie says
We have to keep moving. I’m really glad to see that Andy’s story has resounded with so many of our Fibro Warriors.