Written by Jane Stuart, a Spoonie of 6 years, she suffers with PBC, AIH, Raynaulds, Asthma, and IBS.
I’m sure it’s a dilemma many a Spoonie has faced. Limited number of spoons and the realization your body is no longer what it was.
Like most Spoonies, my spoons are limited by a list of chronic illnesses.
When I was diagnosed with Primary Billiary Cirrhosis (now Collangitis), I quickly came to the realization that I was in a position where I could no longer take my body for granted. I needed a total health overhaul and quick. I wanted to know that no matter how ill I was, it wasn’t because of me. The condition was autoimmune and I needed to fight back and make sure that my body was as healthy as I could make it. An initial scare of fatty liver disease made me take a long hard look at what my diet and lack of exercise could have done (granted it wasn’t the diagnosis but it so easily could have been).
I was hitting 30 and had never been into exercise. It did not inspire me and quite frankly I was beyond rubbish at it. So as motivation to attend the gym waned with the fatigue and the prompt diagnosis of second autoimmune condition on my liver I forced myself to take matters into my own hands.
The second diagnosis meant a long course of corticosteroids. The prednisolone made me like a Duracell bunny on speed. I used it to my advantage as started an outdoor boot camp. Initially it felt great, I felt so self righteous turning up to work having done an hour of intense exercise. I was still rubbish, always at the back of the pack and progress felt slow to nonexistent. I remember being so excited after months of hard work when I managed to run 1 km without stopping…..I mean months. I became addicted to the exercise.
I can see all my fellow Spoonies roll their eyes…..don’t worry, it was a steroid fueled energy and once off the steroids that motivation was zapped out of me sooooo quickly.
The Reality of Exercise for a Spoonie Now
I’m sure this will be more like how most of my fellow Spoonies feel on a day to day basis. I use most of my spoons just getting through a working week. I am usually dead by the weekend. I have no energy and there are times I would cry if I wasn’t worried about wasting the spoons on it.
Currently it’s boot camp 3 nights a week, before that, it was body combat, and swimming and kettle bells and power hoop and Zumba, there has even been pole dance sessions in there. What they all have in common is my will to not let my illness stop me from keeping my body healthy….don’t get me wrong, I am carrying far too much weight and I am still so unfit I wonder what the point is sometimes.
I force myself to use the last of my spoons 3 times a week to hit the gym. Some days there are more spoons than others. Don’t get me wrong, it is at the cost of the housework, but I do recognize how very lucky I am. I have a very understanding partner who will do the dishes, tidy up and do the laundry to allow me to reserve those spoons to do something for me as he sees the value in it.
There are times when I physically drag myself there. I have to do the lowest intensity option and I have to stop every few seconds to catch my breath. I will come home and stand in the shower (I would sit but the shower cubicle is so wee I fear I may get stuck!) hardly able to wash my hair.
But then there are times I feel a bit more energetic. I can up the intensity level. Of course on those occasions my body will always find a way to upset the flow. My Raynaud’s will kick in, pins and needles in my feet will give way to a total loss of feeling in them. My hands and wrists will protest at any bodyweight exercise where they need to support my weight and to top it all off, I go scarlet. I actually look like my face might explode (and my arms will be frozen!!)
The upwards struggle
So I know that most of my feelings from this comes from my own lack of self esteem but I get the feeling that people are looking me up and down with the look of ‘Aye Right!’ when I tell them how much I exercise. I certainly don’t have the body of someone who does the exercise I do. It doesn’t reflect my diet either. If you saw me run you would doubt I’d ever been to an exercise class in my puff. But you know what, I know different. I know I go, I know I work my socks off.
My body looses muscle mass so quickly, my body does not gain muscle quickly in fact it doesn’t respond to anything quickly. I watch newbies enter the boot camp at the same fitness level as me at week one (in fact I am naughtily chuffed if I can out boot camp them in week one – small victories and all that) then by week eight, they have improved far quicker than I could hope to improve in over a year (yes, over several years in fact). It is demoralising and depressing and quite frankly it breaks my heart.
So why do I put myself through it?
I have to, like I said, muscle loss – if I didn’t exercise I am pretty sure I wouldn’t be able to do many of the everyday things I need to do, I would struggle with simple tasks. I need to sleep – I am fatigued….all the time….I can’t remember not being tired. So why is my sleep so rubbish? The physical activity helps, granted only a little bit, but it helps. I get a better night sleep if I have exercised and we all know…. a better sleep can mean an extra spoon or two the next day.
I want to be normal, I want to feel normal. I don’t want to let my conditions rule my life. I don’t want to be the person who is unable to do simple tasks. I want to be like everyone else.
I care about my body. Quite frankly I question if it cares about me sometimes, but I know that as much as I don’t feel like it is responding, it must be. It must be benefiting from the exercise. I feel awful if I stop for a week to two. So it only makes sense that it does benefit. I don’t want to be the reason it fails, I don’t want to suffer knowing I did it to myself.
“You must have more spoons than me….” (that’s right, I can hear you mumbling under your breath). Maybe I do, maybe I don’t. It’s all relative I guess. I choose to use my last few spoons for exercise, you might choose to use them to put your child to bed, or to go to the pub, or to do your housework. I cannot tell you how to spend the last of your precious spoons, nor would I want to. People’s priorities are different, people’s lives are different (I don’t have kids, and I have a caring and supportive partner). What I do want you to know though, is that exercise is worth the spoons, even if it doesn’t always feel like it.
12 Top Tips on Using Spoons for Exercise.
1. Make sure your doc/specialist is ok with what you plan to do, some exercise will be more beneficial, and some can do more harm.
2. Tell your instructor/trainer/exercise buddy about your condition. They can adapt their style, give you alternative or lower impact options and motivate you the way you need. Oh and it helps if you warn them your face might look like you are away to explode within the first five minutes (although it is funny to see the look of panic on their face as they tell you to breath at a class the first time you attend)
3. Make sure your gym or trainer has emergency details, a contact, a list of medication and details of what they need to tell emergency services, we never plan for things to go wrong but you know….just in case.
4. Be honest with yourself about your spoons, if you have already borrowed from tomorrows spoons, don’t do it. If you feel guilty about not exercising you should go, you know you can do something, even if it is the lower level – you wouldn’t feel guilty if you genuinely had no spoons left.
5. Find something you enjoy. It is hard enough without forcing yourself to attend something you hate.
6. Accept your body will do what it will do, when it will do it. So what if you can’t run as fast as everyone else, or you still can’t do a full press up…I will let you in on an secret, 6 years on and I still can’t. Remember it will vary, 3 years ago I could run 5km, today I would struggle to get to 1km. You can only try your best.
7. Start, anywhere, just start… If you need to start with a slow walk, or a chair exercise class, who cares, the point is you start!
8. Be prepared for side effects…..I bruise like a peach and it takes ages for anything to heal.
9. Listen to your body. Do what your body needs you to do, just don’t give up, take the breather, get back on it, but whatever you do, keep going.
10. Celebrate the little victories. It took me so long to be able to run 1 km, but I eventually made it to 5 km, I’m now back at square one, but you will still hear me cheer when I can get back to that 1 km. The first time I could bunny hop up one step was monumental, who cares what everyone else can do!
11. Don’t focus on what you can’t do, focus on what you can do. I can’t run fast or far but I am pretty good at kettle bell swings.
12. Set yourself small goals. Really small if it helps. Sometimes just trying one full press up, or upping the speed on the treadmill for 5 seconds can give you the motivation to improve. Try doing the same walk, 20 seconds faster. The little changes can have a big impact and the achievements will keep you motivated.
13. This is more of a PS or an aside as you will….those people you think are staring at you at the gym, they aren’t, they are secretly worrying that you are staring at them. Everyone is there to get fitter, to get healthier, and they will remember their first trip. I know I often look at newbies and think, wow, good on them for taking the first step.
Don’t let your Spoonie status put you off. We all start somewhere. But trust me, the benefits outweigh the spoons used.