• Beth Matthews

Perspectives of Fibro | Part Three

This week I interviewed one of my closest friends as she has been with me since long before the diagnosis and has stuck around, supporting me since. I spoke with Annie as she has very interesting perspectives on Fibro and Chronic Illness especially after having torn her ACL (anterior cruciate ligament) which was repaired with surgery and has a long recovery period. Annie is close with another Fibro friend of mine and she has been with us through the bad and the good. So this weeks perspective is ‘Friends of Fibro’.

When you had your accident, what mobility devices did you need to use during your recovery?

The first thing I got was a super high tech robotic leg and I flew around like Iron Man - or at least that's what friends of mine told me they'd make and never did. But no, in seriousness, I had a knee brace that really locked my leg from being able to twist specifically, and would actually lock if I tried to bend it too far. The 2nd thing was that I was on crutches for the month before to 5 months after my operation. That's not to say I used them every day. But, for example, before my operation, I was still in pain, and even though I was going to physio therapy, being on my knee was really tiring at that point. So even though I didn't need it to go to the corner shop down the road, going for long periods of time on my knee tired me out. Then after my operation, I relied on them heavily in the first few months, as even going to the bathroom for my bedroom felt impossible without the help of crutches. By about month 2/3 I started trying to wean myself off of them as I was getting stronger in physio, but still used the brace for up to about 5 months for prolonged outings.

How long was your recovery and what do you need to do in day-to-day life to keep it from getting worse?

To be honest, lockdown has slightly put a hiccup in my plans of recovery, haha. My knee isn't as strong as it had gotten. It was like taking braces off before you're ready, and the shock of doing 10k steps and physio, to just physio and as long a walk as possible meant I could feel a decline in my knee.

But until I was back to jumping, which was the last stage of my physio therapy? About a year and 2 months of physio. I know some people go faster, others maybe slower. But every time I tried to push myself too hard in the gym, my knee would be in a bad amount of pain (there is a difference, and I thank myself I used to dance as it was easier to know which pain it was), so I had to take it a little slower than others might have - basically I set my own pace, and didn't beat myself up when it was slower. Even though some days I literally had to stop myself from crying in the gym, because I felt so worthless, pushing myself through physio meant that once I could start jumping again, I was having a great time. Then later when I could jump on ONE leg - oh boy, I showed ALL my friends. I was like a kid at Christmas.

In terms of what I have to keep it from getting worse, I'm still doing lunges and squats to keep my knee strength from declining. When it's super cold outside, and it's aching, I take arnica pills (as it helps prevent swelling), and rub arnica cream on my knee where it aches. I'm now in a job where I'm walking 20k a day, and I also bought different shoes to make sure I was cushioning the impact as much as possible.

I know some other people also use kinaesthesia tape - one person I know has had issues for about 15 years, but because kinaesthesia tape, when applied correctly, can help relieve tension and increase blood flow apparently, and hasn't had a problem since. (Note - I'm not a doctor! This is just anecdotal advice!)

Did you notice anything about accessibility? Do you still notice things?

Yes and yes. Firstly, the lack of empathy people can have when you have even CLEARLY MARKED issues. I was on my crutches and had my very visible, clunky knee brace on, and I got onto the tube during rush hour after seeing a friend, and immediately panicked when no one even moved so I could lean on anything. It took one person standing up saying loudly "Well hopefully someone will actually get up for you," and a mother, who had a newborn baby in her arms (who I can imagine still had a sense of empathy from her own recent experience) to get up. I'd never felt so alone, but also so grateful at the empathy some people can have. But that really changed my perspective. Every time I'm on a tube I look up at every stop to see if someone else needs my seat more than I do. Just because you have a crutch doesn't mean it's a substitute to be able to stand for long periods - I cannot tell you the exhaustion I felt, on the tube more than other places.

Which brings me to my second point - about the lack of accessibility in old cities/building. If a bathroom's toilets were up even a couple steps - took longer. Or if an underground station didn't have an elevator - account for about 5-10 extra minutes of getting out of the station. I get that London is made up of a lot of old buildings and stations, but even in a special exhibition in a very well-known museum - some rooms just didn't have a bench. In a cinema screen you can shove your crutches under yours and your friend's chairs easily enough. But a lot of assistance is given to those who are in wheelchairs - not a lot seems to be around for those who might just want to catch their breath, or get exhausted by a simple flight of stairs. Obviously, this is from limited experience, but this really changed how I felt about accessibility. I still find myself looking around where I am and going thinking "that's not accessible, that's accessible, if that had a lift" etc.

What tips would you give to someone if their best friend just got diagnosed with Fibro?

Firstly, how to support their friend. Direct them to a friend or Facebook group with Fibro. It's not pawning them off, and still make sure to be there for them in their frustrations and as emotional support. But you need to accept that while you can sympathise with their situation, you won't truly know what it is to be in their position.

Also, accept that plans will change. They might think they're totally up for a night out, when a flare out of nowhere hits them, and instead you might go to their house and watch movies or something, or not even see them at all. Other times, if they're out, and feel up for it, they might want to stay out as long as possible to take advantage of their body feeling ok. Not to say you have to stay out with them if you've got somewhere to be by 8am the next morning, but know that plans are fluid.

To the person specifically, find the line you draw with your friend in how hard you push them, or how much they need to relax. It's different for everyone - and don't be patronising about it. No one likes having independence taken away from them, so still talk with them and laugh with them as you would, but if you're planning a heavy day out, maybe just ask them if that suits them, or if changing the plan slightly might be easier for them. At the end of the day, as with everything, it's being mindful about what they might need. In the same way you factor in someone's allergy when cooking everyone dinner, factor in their energy levels when planning things.

What's challenging about being friends with people with the condition? (you can be totally honest, there's no judgment)

At the start, when I met my first friend with Fibro, I genuinely didn't understand it. I tried really hard to be sympathetic, but a little voice at the back of my head sometimes asked "Well it can't be THAT bad, can it?". Once I started being around her more, and getting closer, she'd let me start seeing some of the bad, rather than the good - a reminder that looks can be deceiving.

I would honestly say the biggest wakeup call, and I'm ashamed to say it took this much, was when after my knee operation, I went to see her and her partner, and I couldn't walk for long periods, or even to the other side of the high street without being exhausted and needing a nap. At that point we had similar exhaustion levels, and I thought "Holy s***," and found myself grateful that my disability, as much as I hated it and it sucked at the time, I had an end goal in sight, and was treatable with physiotherapy. But it made me acutely aware that while I'm able to now go for a job that has me walking 20k a day, there are things my friend can't do. It was a very harsh wakeup call to what my friends have to go through, and was an experience I told myself I never wanted to forget, as it had brought so much insight into struggles other people have. I'm not going to pretend I'm perfect at that, but rather than get over and forget the hardships, isn't it better to remember what happened, and see what you can do differently?

It also took me a while to get used to plans changing. Sometimes it would get frustrating, like "Why don't you want to meet up? I haven't seen you in 3 weeks," but time has really opened my eyes to just seeing. Also, asking my friends these questions, and asking them without hate or anger (because it's not their fault, and it's not like they don't want to see you too), has given me far better insight. It took some retraining of my brain to say to myself to not be angry with them, because it's not like they asked for this. Asking curiously, not angrily, has honestly negated a lot of challenges, because now that I can understand them even a little, I can adapt to them.

I think also learning how to handle their frustrations - that was definitely a challenge, and something I still struggle with. It's not a frustration with them by any means, but you always want to help those you love, and being so helpless to it feels sucky. But also you can do little things, like bringing a cup of tea, or helping rationalise their actions when they're foggy. Like having a friend who has diabetes and recognising the signs of them crashing and needing sugar, read the signs of your friends and see if they need help. But offer it gently - don't push help onto them they don't want..... unless they're trying to light the house on fire accidentally in a foggy moment. Then definitely intervene.

What's rewarding about being friends with people with the condition?

They have the best resources for pain management. No joke. My knee still hates me when it's cold AND I'm walking a lot - Annie use painslayer!

I would also say, we've found different ways to have fun. We don't have to go down the pub every time we want to hang out (not that it isn't an option!). But we have cups of tea in kitchens, and during lockdown text each other during funny times of films. A lot of British culture is going drinking with each other, and honestly, I've appreciated the sober times I have with these friends as much as I do the nights out.

Also I would say it's made me think twice if I'm quick to judge. Reminded me to be more open minded, that everyone has way more behind their story than "they're in a wheelchair, therefore they CAN'T WALK AT ALL" - NO. THIS IS NOT TRUE. Like what I said with my crutches, after a while I could go to the bathroom or around my house without them, but not for a long walk around town, this also rings true for wheelchairs. In addition, they themselves are some of the least judgemental, most sympathetic and empathetic people, as they know what it's like to be judged without knowing the whole story.

Seeing how much they go through, and still push through to be the highly ambitious people I know they are. It's humbling, and reminds you that you should be grateful for what you can do, as they are grateful for the days they have a clear head and only a dull pain. It doesn't mean that you can't have bad times and days, but it also reminds you of what sheer human stubbornness and perseverance can achieve.

In five years' time, what would you like to see for people with Fibro?

More people in workspaces accommodated for. Not just for Fibro, as I know that some things, like having a good sofa, or flexible days of work can work for a multitude of people - those with kids, or other disabilities that mean a 5-day work week is shattering, where to most others it's just tiring. Just seeing more workspaces adapt, which I think they've learned they can do, what with lockdowns.

Something out of lockdown and all this as well - work from home. Just because you can't come into the office doesn't mean you can't work. We're able to have conversations with people a continent away using technology. Obviously face-to-face interactions shouldn't die, but where it is needed because someone is too sick to come into work, or is having a bad flare, or has a contagious bacterial virus, why can't we implement work from home? Work still gets done, no one becomes more pained. Boom.

Also see more people become aware of the disabilities that exist. For example, many people still don't understand that Fibro is real. Let me tell you, seeing your friend being unable to get up off the floor because of how much pain they're in - it's fucking real. Don't wait until someone is on the floor in front of you to believe it.

Describe Fibro in five words.

Love. Gentleness. Pain. Chronic. Sympathy.

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