Friday, 16 December 2016

Of fibromyalgia and going to the gym

Of fibromyalgia and going to the gym when you have a gym phobia - Feisty Tapas

This is very much the last post I ever thought I'd write. Me? Writing about gyms? Me? GOING to the gym? Regularly! I do not like sweaty people and I do not like lycra and I have always had a gym phobia.

But now, you see, I wear lycra (shock horror). And I wear lycra on the morning school run. Apologies fellow school parents.

Why is this a big deal? I have this BFF called fibromyalgia. You know how they say to keep your friends close and your enemies closer? Well, that's where I am with fibromyalgia. So really the first F in BFF stands for “frenemy”.

A year ago I could hardly move. Even brushing my hair hurt. I had just been given a diagnosis (or rather a name to the pain of almost 25 years getting worse). It was now called fibromyalgia (who knew!). I was getting used to my medication. The thought of moving, above all in the evening, was painful and the action of peeling myself off an armchair in the evenings was torture. Everything hurt and it was easy for me to get stuck when sitting down, needing my husband’s help to get up.

The hardest thing I have had to get into my rather thick and stubborn skull this year has been the fact that that pain is not going away. I am stuck with it! It took months to understand. In fact, you would think that, having had chronic pain for 25 years, I’d have been able to get my head around this in no time. Apparently the fact that the pain was everywhere didn’t help my poor tired brain compute the situation.

By the time I had the word cancer mentioned to me personally at the beginning of 2016, I didn’t know whether I was coming or going so I just went, along to the surgery because, seriously, once you’re in the roller coaster you might as well just go with it! Me? Skin cancer? I don’t even like the sun that much! The biopsy of my skin lesions came back fine. Phew!

Once that worry was out of the way (thank you Addenbrooke's Hospital in Cambridge for the speed that everything was dealt with), CBT with my amazing chronic pain specialist Rona was in full swing once a week. It was the month of April. The weather was improving. I was feeling more positive. I was finding my inner warrior again and it was time to listen to the doctor and start moving a bit more, slowly after dialling it all back a fair bit in order to build it (and me) up again; however much it hurt. It was hard because two things had highlighted the worsening pain back in September 2015: walking a fair bit a day and trying to start yoga again.

So, really, this is the one blog post I really needed to write before the end of the year when it all happened (2016).

This is my advice to get you to the gym. If, like me, you have a chronic pain condition and a gym phobia.
Fear, it has its uses

If even the thought of moving scares you, this is where pacing yourself comes in, do not go all in like you might have done 10 years ago or like you wish you could. That is definitely going to hurt more than it should and you might not be able to move for a week (or two). It’s really important to work to your level and for that you need to not overdo it, it’s the only way you will find what your level actually is.

Find the right gym for YOU

I can't stress this enough. This is the story of how I found the gym that was right for me:

My gym journey started in early 2016 with a medical referral. I was feeling stronger and keen to try anything and everything to stop feeling so much pain (and so useless) so, armed with strength, I dug the stretchiest clothes in my wardrobe and there I went. The lady who did my induction was lovely and helpful but then I was left to my own devices. Of course I could ask for help but I'm not the type who feels comfortable with asking for help.

The machines were complicated and they had changed a lot since I had last been in a gym probably circa 2005. There were gym bunnies. Men dressed in muscle-hugging clothes who adored their own bodies while looking at themselves in the mirror. Mirrors everywhere. Selfies (obviously NOT me taking them, least of all on a moving treadmill, those things give me hives). And the lady who clearly was 30 years older than me and kept looking over my shoulder to beat my VERY low levels in the machines. Machines I couldn't work out. Help was far away, I could call reception if I needed anyone. I would have had to call every five minutes. Then I fell off a machine trying to adjust the seat…

So, I’m sure you can understand that more and more I was getting myself ready for the gym and doing a beeline for Starbucks the moment I was at the gym's rather scary door.

It was time to get a grip!

I did a bit of research, I found out more about each gym. It was easy to rule them out. For example, I was never going to go to the gym with big floor to ceiling windows where passers-by can see you work out, was I?

Basically, I took control. If I have learnt anything from fibromyalgia (and I have to thank blog reader-turned-friend Debbie for this) is that I won’t let fibro control me me. Debbie’s words to me back in April 2016 were: I won’t let fibro own me. I just keep trying.

Forever inspired by Debbie’s words, I found a gym that sounded promising and, feeling brave, one Monday morning in early June 2016 I opened the door and slowly climbed a few steps ready to get a feel for it. I was fully expecting to freak out and run (slowly) down the stairs and back to the street.

Here's what I found:

Ladies only. No gym bunnies. No mirrors. A community. Friendly staff who couldn't go very far away so were always going to be on hand. Motorised equipment that could do the work for me on a bad day and that I can push against on a good day.

Basically, it left me with no excuses! And I am the queen of excuses when it comes to getting out of exercising!

I got a very good vibe. So I joined right there and then and ever since then I've been going, no matter what has happened to keep me away, like colds, bad flare-ups, the summer break with my six year old... I've always gone back. This is unheard of for me because, the moment I fall out of habit, it's very difficult to go back.

Choose the right classes for YOU

Now, here's the thing, I do have fibromyalgia. I go to something along the lines of Zumba Gold classes that are only half an hour and aimed at older people. In fact I am very aware that I wouldn’t last a whole hour so they are perfect for me.

Who cares what’s trendy. Are you managing to move? It’s trendy for YOU.

Attire

You don’t need expensive gear to do this. Do not let that put you off. I started by digging the stretchiest clothes I had (I have a 6 year old, can you imagine how old they were?). Once I signed up to the gym, I took myself to the local Sports Direct and bought a couple of cheap black leggings and a couple of cheap tops. I had old old trainers (seriously they were Nike and they cost me £9.99 at Makro back in the day, so very very old) and some walking trainers I had been given. The price of trainers in 2016 scared me so, for the first few months, I was sorted. In fact I have only recently given in and bought myself shiny new trainers at £29.99 from Sports Direct, because now I know I will keep going.

Frame of mind

No more excuses! This is simple. You have found the gym or classes that are right for you. You have exhausted every excuse. Now it’s time to just go for it.

Prepare for a whole range of emotions

From the very first fitness class I attended, once I started moving, I felt a huge range of emotions invade me. My CBT lady talked about movement therapy as a comparison. I have not been able to put my finger on it, it was a mix of tears caused by actually moving again, perhaps feelings of freedom, and pretty sure some tears have been due to the fact that I wasn’t able to keep up or do many of the things that 10 years ago I could easily do without thinking. Although rather embarrassing, the tears have been worth it.

The fibro fog will get in the way
Yes it will, I’ve been doing some of the routines for six months and still now I totally blank out on bad fog days. I look at the teacher trying to keep up and sometimes have to stop.

When I get lost, I keep moving, I may be doing it wrong but, hey, the whole point is for me to move. So sometimes I have to have a word with myself and decide: arms or legs, you just can’t do both today.

I am sometimes aware that I am giving the instructors a really blank look and I can see them looking back at me and wondering what on earth is going on. But, you know what, that is ok because…

The only person you have to impress is yourself

Seriously. Sod the world. You're doing this for you. And you are on your own doing it. Only you can go through with this. No one else can go to the classes for you, no one else can sit on those machines for you. When you are at a gym where you feel comfortable and can have a good laugh when you get it wrong, you know you’ll keep going back. Find that gym.

When you get down for whatever reason and tempted not to go back, remember where you were last week, last month, last year, were you able to do this? Did you do as much as you do now? No? Then you’re winning, who cares what others around you are able to do, it’s you and you alone in this battle and you are the winner!

The tough reality

It takes time. It’s not going to happen overnight. It is going to drain you. But you are going to do it anyway.

If you have weight to lose like I did, you might think all aches and pains will leave your body and mind once you lose the extra pounds because you’re going to be and feel lighter. This was very much NOT true for me but it can only be good for my health in general, right?

On a bad day that gets me down. As I try to peel myself off the armchair in the evenings, pushing up with my arms because everything from the waist down hurts, it's easy to think what on earth have I made all this effort for? I'm no better! I have lost weight, I have paced myself, I have learnt to meditate, I try my best to control my anxieties and still EVERYTHING hurts, even when I brush my hair!

So, why do I keep trying?

Well, I’ve figured out that it helps me feel stronger, it helps my self-confidence, self-esteem and self-worth, but also it helps me bounce back much faster when I have a flare-up. So I do keep trying. This is not a cure, it is not going to end the flare-ups or the pain but persevering is very much worth it.

Dealing with that tough reality and the people around you

"Wow you’re out of your class already? You only just left!”. Yes, unfortunately with my condition 30 minutes is the maximum time I have in me for a dance fitness class. For pilates I can do a bit more, I can stretch it to one hour, I can also stretch my very achy hips while at it and I can confirm I have no balance whatsoever so, how do I manage pilates for one hour? I say this to myself over and over again: "this time last year you wouldn’t have dreamed of being able to do this.” Because THAT is the truth that keeps me going.

I may spend a lot of pilates thinking “seriously, where has your flexibility gone?” and then going back to my mantra “actually you have regained a lot of your flexibility Maria, there was no way you could have done this a year ago” (my CBT lady calls me a “busy brain”, I wonder why…). No wonder I can’t keep up during pilates. But then life surprises me with someone approaching me at the end of the class to tell me: “wow you’re so flexible”. Life is indeed still full of surprises.

A while ago I found myself being volunteered for a netball team. Well I do exercise now and wear gym clothes every day after all… I was so embarrassed. I didn’t know how to begin to explain that I exercise mainly with the over 60s and there was no way I could play netball (and not only because I’ve never played netball in my life). But then I thought to myself: “hold on, you are already doing more than enough, you are doing so well! Do not feel bad about not being able to do sport”.

Going to the gym or taking up a fitness class can bring a lot of confusion both to you and the people around you but the thing is: "you are going to the gym!”. I may limp to and from it very often, but I am going.

Remember my mantra? You are doing great compared to where you were only a year ago, in fact where you were 6 months ago!

Don’t forget your spoons

Find a way of exercising that builds strength and doesn’t leave you in bad shape for the rest of the day. You are a spoonie, you need to remember that. Count your spoons and use them wisely. If you haven’t read about the spoon theory, make sure you read all about it here.

Embrace your limitations

The fact is, I have limitations, I hate them but I don’t think they’re going anywhere fast.

I call it my “limitation wall”, it’s my own set of limitations. It’s unique to me. You will have different limitations so you will have your own wall. Find those limitations and embrace them.

Once you tackle your limitations with the range of exercises and motion that is right for you, you’ll find some of those limitations fall further away from the wall, you pick them up one by one at the start of the day (at the same time that you drop spoons). Once you reach the wall, do not try to take it down, do not try to push through it all guns blazing.

Instead, work on being a demolition expert for your own wall of limitations. How? Gently see if today you can push it a bit further away, if you can’t that’s actually totally ok, because you’re going to give it another go tomorrow, aren’t you?

That’s the spirit!

And, you know what, if your wall of limitations stays put for a whole month. If you can’t lift both legs at the same time for any of the exercises during your pilates class and need to leave one on the floor. Then that’s ok! And if you don’t feel like you can try to lift them both for three months, that’s ok too. If you can't do a particular exercise, then that's ok too! My instructor (also one of my dance fitness instructors) mentions this regularly and every time it serves as a very timely reminder to stop and check with my limitation wall and my spoons.

Because you can check again with yourself at every session until you find that you are stronger. If you never find that strength then, sod it, that particular stretch is not for you. Same with getting your head around the pilates breathing on a foggy day, trying your best is more than good enough. So you can't get it right at all, well just remember that neither can I!
Turn "I can’t” into “sod it, let’s give it a try”.

Take a leaf out of the older woman’s way of thinking
A lot of the people at the dance fitness classes I attend are 20 years older than me and they are all amazing. These women have taught me really important lessons in the last six months.

Probably the most important lesson they have taught me is to have no hang-ups. No hang-ups regarding my weight, my age, my grey hairs, my wrinkles and my limitations. I am the way I am. I am 43 and I am ageing the way I am ageing. Full stop. Time to embrace it and get on with it.

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Back in April, Debbie’s words "I won’t let fibro own me. I just keep trying” helped me take back a bit of control. Gradually I feel I’ve been able to take more and more control of my fibromyalgia. I feel like I’m finally winning the battle. I write these words in the hope that you too might find something that sparks a little light in you that makes you take action because, however dim that light might seem inside of you right now, I know it’s there (however deep inside) and the truth is that you totally can do this. However little your range of movement now or in one year, you are doing this for you and you’re totally going to rock it!

Basically, if I can do this, you can too!

Maria

PS - As ever a big thank you to my community for their ongoing support. Without your help and knowledge, I probably wouldn't have done as well as I have done! Make sure you join the Feisty Tapas' Health Warriors if you could do with a little community to help you stay sane.

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