Spoonie Friendly Exercise an Introduction

This post has taken me the best of 3 years to write. Mainly because I have personally found exercise such a triggering (and I mean this in real mental and physical health terms) topic and I understand if as a spoonie you do too.

This week we’ve been chatting a lot about exercise over on Instagram and I’ve saved the highlights of these for you to read. In summary as a community we face barriers to exercise such as:

  • Unable to do the exercises in classes and videos etc as they are aimed at a mainstream audience and don’t understand the complexities of disability
  • Places like gyms and swimming pools are inaccessible and expensive
  • We have had bad experiences
  • Exercise can cause more pain and fatigue
  • We compare ourselves to others and feel inadequate and what’s the pioint

On the plus size we also feel a sense of joy and accomplishment when were are able to exercise. It can relieve pain and build strength. So the key to it really seems to be that:

  • exercise doesn’t look the same for everyone
  • some is better than none
  • trying lots of things to find the right fit is important
  • reaching out and finding exercise that is tailored for disability is vital
  • don’t exercise for anyone but yourself and your own reasons

So let’s get stuck in and see what I’ve found along the way. Here’s the mandatory (cue eye-rolling) bit that says I’m NOT an exercise specialist, doctor or trained professional. Here’s what is important:

  • Do not cause yourself harm by trying something without consulting your doctor or a professional.
  • What works for me may not work for you at all.
  • Don’t compare yourself to what I can and can’t do. We all have different and beautiful bodies who can do different things. Love that, embrace it and move in your own way.
  • Remember a little is often more. if its 5 minutes of movement that celebrates your body then thats awesome.

For those who struggle with lots of text here’s a quick menu to skip to the sections.

Exercise Referral Scheme – UK incentive to get active
Exercise and the instructor
Beginner exercises
Moving up to intermediate
More advanced levels of exercise

My exercise story

Although I’ve always struggled with energy and exercise I remember a time when my mobility and energy started getting worse, pilling on the pounds (learning this is ok and unlearning my own fatfobia) as I took more medications and gradually moved less. Who really wants to exercise when it hurts and you feel like you have the flu? Exercise became something for me that was painful, triggered fatigue and caused injury. I’ve never been super into sport, probably as I am hyper mobile and prone to injury. I have always loved swimming, cycling, walking and yoga. Not being able to do these things takes its toll on your physical and mental health.

To add to this I kept seeing posts such as “go hard or go home’ and ‘there’s always someone busier than you in the gym’. Yes these statements are designed to guilt you and yes they are absolutely loaded with ableism. They may motivate a certain type of person but to others, like myself, they put me completely off and made me feel awful about myself.

Then one day I mentioned this to a friend when I bumped into him whilst at the gym. I was there for Water Therapy, which I have done as part of the exercise referral scheme for the past 7 years. He said to me ‘I see you here all the time though?’ and I replied that I only did water therapy and supervised gym sessions and they were very, very low key. His reply was that it didn’t matter what I did compared to anyone else and my going hard or going home was turning up.

I’m not going to pretend the comparison went away, but I know that by being there and doing what I can I am doing something. I believe that any of us, what ever our disability or restriction can do the same too. I’m not pretending the accessibility and financial barriers are nit there. But if we challenge them and ask for more then we are able to ‘exercise too’. If you can find your own way to move and make your body stronger in a way that works for you that’s exercise. And that’s why I’ve been inspired to write these series of posts as my experience and guide to exercise as a spoonie.

I am going to repeat here that I am not a professional in terms of exercise or medical training. As always you should check with your health professionals if you are in doubt. What I can offer is an honest account of what I have found helpful and I’m am never ever going to say any of this will make you better or cure chronic illness. I do believe we are happier and healthier when able to take part in exercise in what ever shape that looks like for you. So here is what’s helped me.

Exercise referral scheme

As I mentioned above I started this scheme before anything else. Its a 12 week guided programme working with a specialist(s) to get moving again. There is a small fee to join which is no where near the price of memebrship or classes. In fact by paying there is motivation to turn up. It’s offered by the Nhs to qualifying patients.

Exercise Referral is available for a range of medical conditions such as; Coronary Heart Disease, Stroke, Respiratory Disease, Cancer, Diabetes, Obesity, Muscular/Skeletal problems and Mental Health issues amongst others. You may also be recovering from an illness/injury or need exercise to address risk factors associated with medical conditions. We are able to offer specialist, qualified instructors for: Cardiac Rehabilitation, Cancer and Musculoskeletal conditions. The scheme is aimed at those who are currently physically inactive.

(To those in other countries, I can suggest talking to your GP to ask what is available where you are.)

I have to be honest I was really put off by the first gym I joined. They didn’t listen and gave conflicting advice. (They told me I could get in the pool with RA but not with Lupus. I asked why and they said because of risk due to medication like Methotrexate, which is used to treat both. I checked with my doctors and this is rubbish!) But determined I started again with a different gym and loved it.

Exercise and the instructor

The instructors at my new gym took the time to get to know me and my conditions, they even phoned my physio to ask what was good and bad for me. They never push but just support. I do Water Therapy ( not the same as hydrotherapy but similar) which is working to build strength and flexibility in the pool which minimises pain and pressure on the joints. I also do an exercise class and supervised gym sessions. If you find the right gym then this programme is such a good starting point. Don’t be afraid to say if the gym or instructor isn’t working for you. They have to get it and be trained in what disability, illness or impairment looks like and works. They will also provide specialist equipment such as different stairs or a lift to get into the pool. For me getting the right support was the key to building my strength and confidence.

Beginner Exercises

Although you may not be jumping into cardio and aerobics or Hiit (shudder), you can still get moving in a variety of ways. Just small movements , whether its strength exercises, yoga, or walking get us moving. And a little movement is better than none. In this section I’ve provided a number of ways to try to ease your way in to movement and find what works for you.

Active 10 we’ve all heard of Couch to 5k over the past couple of years and probably know of at leastt 5 people doing it. With joint pain and fatigue the idea of running makes my blood run cold. The only way I am running is away from doing any running at all! I was delighted to find out that the Nhs also has a lesser known app called Active 10. This is an app that is entirely based on walking and building up active minutes (brisk for you walking) each day. The key is to start small and gradually increase and the goal is 10 minutes a day. It is available to download for free here. PROS: Its free and simple CONS: it relies on walking and remembering to take your phone!

Stretching and Strength is really important for our flexibility and staying mobile. This supportive workout programme by Katy (Invisible I) is great because Katy understands fully how challenging basic movements can be. The video below is her sharing what she learned on the 5 week pain management programme. She is super gentle and guides you through a series of exercises to create your own tailor made exercise programme. I like it because there is no one to compare to and the emphasis is on some is better than none. PROS: Its free and you don’t have to get dressed or leave your home CONS: No one is checking you are doing the work correctly and it relies on you motivating yourself

Building Up Strength Gently: At the beginning of lockdown I went into shielding and was unable to go to the pool or gym. Also being unable to leave the flat meant that my already sedentary lifestyle was becoming more limited. I was sent a list of exercise resources by the shielding service and began with some basic workouts. I liked the video below which from The British Heart Foundation. It’s a nice easy full routine to follow from beginning to end. It gives you something to repeat and on a regular basis to build up strength. It also gives variations for different abilities. PROS: it seated or uses a chair to lean on. They also provide different levels to make it easier or harder. It’s also free. CONS: some relies on standing.

Yoga For Bed Days: I can’t tell you how happy I am that there is a yoga video made for when you can’t get out of bed. I’m not suggesting this is for when you are absolutely broken. But its something to pull back to when you want to move a little but can’t muster the energy to get your mat out. Or if you can get your mat out its super gentle. Even if this feels like a super easy routine for you have it in your arsenal to pull back to when you need it. For me a fluctuate so much with flare ups and injuries I find myself starting back at the beginning of this process all the time. And doesn’t worry if you still find parts of this hard, legs straight in the air rarely happens for me. PROS: super easy and shows how little movement can go a long way. CONS: I wish she’d been in an actual bed!

Moving up to intermediate

Getting your heart rate up. Because I wasn’t able to leave my flat and walk in lockdown I was very aware hat I wasn’t increasing my heart rate. I find cardio hard because of POTs and circulation but I do feel better when I do it. I’m not someone who gets an endorphin rush and prefer slow movements. But I thought I’d give it a go, everyone else was doing Joe Wicks and I knew that was a no go. So I hunted for some spoonie friendly exercises. I love Cocolime Fitness because she is knowledgable but real. She challenges me but also gets out of breath and wobbles. The important thing is to start really small and I mean literally 5 to 10 minute workouts like below. PROS: it’s free on YouTube. The exercise are low impact on the joints. The raise your heart rate by you moving the largest muscles in your body. CONS: No one is checking you are doing it right. It is easy to pick a too difficult level. I’ve done it and nearly committed and passed out then been unable to move for days!

Yoga can also be done in levels too. If you haven’t heard of Yoga With Adriene then where have you been?! I love that she has yoga for EVERYTHING. I love the yoga for Chronic Pain and Yoga for Migraine routines as they not only are about moving but they are designed to help as relief too. She has so many videos on YouTube and once you sign in you can save all your fave accounts and videos to come back to. PROS: there are so many free videos of all different levels to choose from. Oh and Benji the dog is always a joy. CONS: No one is checking what you are doing. It is easy to pick something too difficult or compare to what others are doing. For this reason I would stay away from things like the 30 day plans.

Zoom Yoga. The other yoga classes I have been doing during lockdown and continuing are online classes live on zoom. You pay per class and join the zoom (video call) session in which the teacher teaches live. You need to have space and your own equipment. Its great if you were previously attending classes and now can’t, get in contact with your teacher as many have moved to teaching in this way alongside their in person classes. Isn’t it amazing just how accessible things have suddenly become?! If you don’t know a teacher ask your friends and family as they may know someone. Try a beginner class like relaxation yoga first. PROS: you don’t have to leave your hime. The intructor can see you and make suggestions and vary the skill level. CONS: it costs about £5 to £10per session (when you do 3 sessions per week this can mount up) and you need to buy your own equipment.

More advanced levels of exercise

Increase the length of your routines. I began to slowly increase how long I was exercising for. Over three months I managed to do cardio based exercises for 30 minutes! But this was slow going and took a long while. Don’t be tempted to make big leaps, there’s nothing worse than overdoing it and feeling defeated, in pain or unable to do it. The truth is you can do it, rest, recover and drop to a place you can do it. Again I love Cocolime Fitness for her varied and fun routines. The ones with dance are a firm fave of mine. She does also offer paid programmes and I have considered them as I love her approach. PROS: varied, fun and different levels and duration. CONS: only a limited amount of free content. Easy to overdo it.

Seasted Workouts. Chair Workouts is a great channel for those who find standing and working out not an option or difficult or painful. My fave workout is this one. It does involve moving the legs so be aware of this. It shows different levels and I like the instructor as he’s real and not patronising. Its hard though and the arms above the head kills me! PROS: a challenge but easy on the joints CONS: lots above the head which makes me dizzy.

Cardio in a shorter time frame: The British Heart Foundation have this beginners work out to get your heart pumping. Though for me the length of the video was deceptive as some of the moves like jumping jacks are hard on the joints. Its a good way to get into basic aerobics but I think requires a certain level of able bodied fitness hence why I have put it in the harder section. PROS: a shorter routine that really gets your heart going CONS: more challenging than it appears.

I hope this has in some way made you feel seen. That you know that sick bodies, disabled bodies, fat bodies and tired bodies can move. But that is unique to you and on your terms. You can ‘exercise’ if you are in control. Remember the word exercise should mean what yo want it to. It should look like what works for you. It should be enjoyable and most importantly only be for you. Let me know in the comments what you have found that helpful and let’s together build a database of exercise for everyone to dip in and out of.

Who am I?

So…

I don’t know where to start this one. But yesterday I was asked who I am. I was floored.

I am Vic.

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But who do I present myself as? For years I’ve been me but maybe not me? Its such a confusing question. Can knowing who I am be the answer? I can’t answer it, partly because its a fluid thing and partly because I just don’t know.

I am Vic. I’m creative, passionate and imaginative.

 

For years I’ve played at being an artist and I did ok at it. I’m creatively inspired by stories true and fictional. I’m passionate about the power of the Arts and working with others. My imagination has taken me on some crazy adventures and projects, all of which I’m proud.

Over the past few years my ability to work effectively has been swallowed up by my physical and mental health. At first I said yes to everything in my excitement to be working in the Arts. I was good at what I did so work came to me and despite the struggle in terms of funding and consistency I was happy. The work grew and my company Wide Eyed Theatre was born. I worked in multiple roles for the company, as a youth worker, sessional lecturing and freelance. All aspects I have loved, and despite being poorly paid, I know along the way I have made a real difference in young people’s lives.

Maintaining this was a struggle and at some point amongst all the anxiety fear, pain and fatigue I stumbled. Something went wrong inside and no matter what I did I just couldn’t keep up or manage everything. Work was so important that the first thing to go was my social life and me time.

I began to reduce my life and cut out the extras that tipped me over the edge. I was stuck in a cycle of working or sick. I gradually got more and more fatigued, I’ve often described it as every day feeling fluey. I’d work then collapse and repeat. I had to take long breaks and nap or I just felt like I’d vomit. Everyday off and every nap carries guilt and I felt lazy and like I’d failed. So I’d go back into it full pelt, desperately not wanting to let people down. It wasn’t working. I began to feel drained creatively too. Partly from not feeding myself imaginatively by slowing down and allowing moments of peace and beauty. And partly because I was giving so much to everyone else and not myself as I was so scared.

So I fought for a diagnosis to understand why I felt the way I do. Why everyday is a struggle and why I let people down. I got used to wearing the label of chronic illness and found it easy to hide behind. In a bad place physically and mentally I also got into a bad place in a relationship and financially.

In 2013 I was diagnosed with Lupus. Since then its bounced around and things have been added and subtracted. I wrote more about the labels here. My current diagnosis stands at

  • ‘Lupus’ like auto immune disease1397203fa8512bc777ae182f1060e702
  • Suspected Behcets Syndrome
  • Joint Hyper-mobility Syndrome
  • Fibromyalgia
  • Chronic Migraine
  • Bipolar
  • Borderline Features
  • Depression and Anxiety

I fought to be recognised as ill and not fobbed off and I feel like a diagnosis means I’m taken seriously and its not in my head. The trouble is that I’ve fought so hard that its consumed me. Lupus and medical took over even back here I was discontent with the Vicki that said ‘Hi I’m Vic I have Lupus’ before anything else.

So when I was asked who I am it jarred and crushed the part of me that has become swallowed by the wolf that is chronic illness. Its my defence mechanism but has made my life so unbearable that I am the wolf.

In 2016 it all imploded and I’ve been left stripped of everything. My mental and physical health is fragile. I’m currently at risk of being made homeless and bankrupt. I’m stepping back from work due to feeling so breakable. I have nothing, yet there is glory in being stripped bare.

Then in this conversation a different suggestion was made. One that may yet have viability. I am still Vic, I have a chronic illness and this is how I manage it. This is how I choose to live with and tame the wolf.

I am Vic. I’m creative, passionate and imaginative. I am fierce and tame wolves.

Some days are for warmth…

So today I woke up feeling pretty horrid. New meds are making me sleep for nearly 10 hours a night, and then groggy the next day. I guess this beats the 4 hours average I’ve had for the past few months.

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I’ve begun a new kinder morning routine. It mainly is about not rushing:

Wake Up | Check my journal (not phone) | Feed and let the dogs out | Enjoy coffee / breakfast | Put myself first with yoga or mindfulness | Get ready | Walk the dogs | Check the post | Plan meals and actions for the day

In today’s journal I had scheduled a Weight Watchers meeting, crafts with a friend, followed by a show at the theatre. After sleeping past the Weight Watchers meeting time, and walking the dogs, falling over in the mud, and nearly passing out I knew I wasn’t up to much. In the panic of pain and fatigue I cancelled everything.

Then I realised I did really want to see people and that I needed company and inspiration. I don’t know about you but I am constantly in battle with myself for shared time and alone time? So today I back tracked and rewrote the day. I’m sticking to 3 things at the moment so my new plan was:

  • Drive to the Cowshed to pick up craft materials
  • Meet with Helen, to eat her home made soup and chat and maybe craft
  • Make chickpea blondies

So I did all these things instead of a disaster it was wonderful. Driving through the autumn landscape in no hurry meant seeing the countryside in all it’s glory. Then getting home it’s all warm and cosy and the dogs were waiting.

Helen arrived with a box full of crafts, and her delicious homemade squash soup (I’ll endeavour to get the recipe). We chatted about life, and ideas, and drank coffee. We both, being spoonies, decide to keep the craft simple and make our own ‘advent calendars’. It was Helen’s idea as a way to be kind to ourselves. I provided the labels to write them on and we both came up with ideas for an action a day that would be treating or nourishing ourselves.

Thats all there is to it really. We wrote on luggage labels and decorated them with stickers. I ended up doing 31 to take me all the way to New Year, and have a whole month of adventures. The idea is to pick one each day to do. If it is completely impossible with your schedule we decided we would be allowed to swap one but you should then make time to fit in the discarded one so all the tasks are at least attempted throughout the month. I’ve decided to do mine with the food bank advent idea. In this I put an item of food into a box each day to donate to the local food bank.

Finally I made ‘chickpea blondies’ as a quick sweet treat, they sound odd but they are amazing. I found the recipe here. They are great for lazy days and you literally shove everything in the blender and bake. Oh and then eat of course, still warm from the pan with oozing bitter chocolate.

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What do you do to stay warm once the weather turns colder and the nights are shorter?

 

 

24 hours

Slept | make up | made daal | almost danced awkwardly at a gig | slept | coffee | brushed hair | driven to Canterbury | held my head high even though afraid | volunteered | forgot to phone people | had coffee with my fave | had tea and cake with an old friend | cried | laughed | been restrained in lush | eaten fish and chips | read | bathed in lush bath bomb bliss | done 40 minutes of yoga | collapsed on sofa to read some more