It’s getting to that time of year again when you start to reflect on the last 12 months. It was no exception at this month’s Red Tent on Tuesday. For those unfamiliar, Red Tent is a women’s gathering on or around the New Moon. It’s … Continue reading A Thank You Letter to MS
I’m in the process of trying to restore some normality to my life. On Tuesday, it was a year since I got told that I might have MS. Obviously it took another couple of months until I found out for sure, but I now feel that I’ve had my year of it being at the forefront of everything, and now it’s time to just get on and live with it.
To do this, I’ve been making tentative steps back into the gym this week. Dave joined the same gym as me, which is helping with motivation massively! I’ve been so nervous about going back since Lemtrada and with the ankle pain I’ve been having. I’ve learned that the ankle pain is triggered by walking for more than five minutes though, so it hasn’t actually stopped me training. As long as I’m doing more static stuff, I can train easily. I’ve had three sessions in the gym over the last week and I’ve been enjoying them. It feels good to be back. So here are my Top 10 tips for exercising with MS.
1. Be kinder to you!
I was always so tough on myself in the gym. If I skipped a session I’d feel guilty. If I had a bad session, I’d beat myself up. If I couldn’t hit that new personal best, I’d dwell on it for days. But these things just don’t matter anymore. They’re not the be all and end all. Now I’m so much nicer to me. If I don’t hit a personal best, as long as I’ve tried as hard as I can that day, that’s all that matters.
2. Be honest
If you have a personal trainer be honest with them. Let them know how your MS impacts you in general, but even more so how it’s impacting you that day. They can’t be an expert in MS, but with your honesty, they can tailor your training to fit how you feel on that day. It might also be worth being open with them up front, that you might need to cancel your training at short notice if you’re feeling particularly fatigued that day.
3. Listen to your body
Get to know your body and what it’s trying to tell you. Tune in to it. If your body is telling you that you can’t train today, listen to it. It’s ok to skip a session if you’ve not got much fuel in the tank. Some days you might just need to change the way you train. If your leg is causing you a bit of pain, don’t run so fast, or train your upper body instead. Maybe you need to reduce your weight and go for higher reps. You might need to take longer breaks between sets. Do what you need to do.
4.. Drink lots of water
We all know that with MS, controlling your body temperature can be a nightmare. I’ve literally overheated in the gym before and seen stars because I’ve got that hot. Drinking lots of water while you’re training will help keep your body temperature down. And on that point…
5. …Train near the air con
It keeps you cool and stuff! I find that wearing layers in the gym can be really helpful because as quickly as I get really hot, I can go freezing cold. Keep your temperature comfortable – it’ll make training so much easier.
6. Change the time you train
I used to go to the gym straight from work, but I find this really tough now. Many people don’t have the motivation to go back out to the gym at 8pm at night but this has two advantages for me. I get to have a bit of a break after work which helps to recharge my batteries. Add to that, training later makes me tired right before bed time so I get a better night sleep. You might find changing the time you train means you can have a better session.
7. Change your goals
I was always chasing a 100kg dead lift. I managed to get to 90kg, but it only happened once. Generally, I struggle to get over 70kg as my grip fails me. Grip is something I struggle with because of my MS, and I’ve learned that that will probably hinder me in achieving that particular goal. What I am good at though, is high reps. So my goal has now become less about strength and more about stamina and achieving higher reps. And I’m good with that.
8. Don’t waste time worrying what other people might be thinking
The other day, I was finishing my workout with a 3.5km/h walk on the treadmill. And the guy running next to me was looking at me as if what I was doing was kinda pointless. Before that I’d been dead lifting a 16kg kettle bell next to a girl lifting 75kg. I couldn’t help but think she thought I was pathetic. Firstly, it was unlikely that either of them were thinking those things, and secondly even if they are they don’t know that I have MS and anything someone with MS does in the gym is pretty damn awesome.
9. Remember you’re bad ass!
You really really are. We aren’t MS warriors for nothing. We grin through pain, fatigue and everything else we get stuck with. It doesn’t matter if you’re running 1k or 10k, or lifting 5kg or 50kg. You are bloody amazing for even being there, working out. As long as you can always be honest that you’ve tried as hard as you can on that day, you’re an absolute rock star in my opinion.
10. Don’t Stop!
My number one tip is “Don’t Stop!” When I was told I might have MS, I was physically no different to how I was when I was none the wiser. So there was no need for me to stop. I didn’t need to change how I trained in the gym (at that time). I did stop for a while which looking back, I regret. I should have carried on! It’s so important to stay active for so many reasons. It releases endorphins which can really lift your mood and it helps you to keep your strength up. There’s evidence to suggest it reduces relapses and flare ups. Most importantly, for me it has helped me to feel like “me”.
Reading back my last couple of posts have made me feel really sad. I’ve obviously not been in the greatest place in recent weeks. In spite of the amazing self love summit that I attended which really did leave me buzzing for at least a week after, things just haven’t felt right for me.
Tuesday was a bit of a turning point for me though. I had my second blood test done and it presented me with a bit of an opportunity to just “offload” a little. And I am so glad that I did. Firstly, being asked to list all of your current symptoms was quite humbling. A list of five, which aren’t really that big a deal certainly put some perspective on things. The nurse that I saw told me that there was a tablet she could ask my GP to prescribe for me that would tackle the pain in my ankle (which hasn’t let up), the itchy scalp, my up and down temperature and the thigh pain. Possibly even help to lift my mood a little.
It feels weird to accept medication. I rarely even reach for the pain killers when I have a headache, but if it can help all of those things, I’m game. Although I’m still awaiting confirmation that my GP knows to prescribe it to me, it feels like a weight off my shoulders just to know that there’s something that can give me a little relief.
Honestly though, my mind has been heading into dark places over the last week or two. It’s not being back at work. I’m happy to be back actually. No, it’s about the pain in my ankle. I recall, somewhere some years ago a similar pain. Back then, of course I didn’t know it was MS and even now I’m only just making the connection. I probably put it down to dancing the night away in cheap high heels. You know it’s no good for you. I don’t remember it ever being this painful and unrelenting though. Certainly not enough to give me an occasional limp.
I was warned that post Lemtrada, because my body has had a bit of a battering and it will take quite some time to recover, some of my old symptoms would resurface. What nobody warned me of, was that there was a chance they would come back worse than when I first had them. But that seems to be a common occurrence. I didn’t know that. Lemtrada has also made me all kinds of irrational, so obviously I started to fear all sorts. As it’s taken so long to diagnose my MS I wondered, is there a chance it’s been misdiagnosed as relapsing, and is actually secondary progressive? I feel more or less comforted that this is highly unlikely, having spoken to others that have experienced worse symptoms than the original relapse.
On top of all of that, the irrational mood? The spontaneous crying? Generally feeling pretty miserable? All comes with the territory but I’m assured, it does eventually lift.
And I’ll tell you what’s helping my mood lift. Autumn is definitely on its way! I could practically smell it yesterday morning. The slight chill in the air, dew on the cars and the sun a lot lower. All that’s missing is a pumpkin spice latte from Starbucks!
Thinking about how much I love Autumn, made me start reflecting on what else I love. What else fills me up? What makes my soul happy? What is it that I need from a self-care point of view? I’ve accepted that for the next couple of years things are going to be up and down. That sounds defeatist, but I see it as a pragmatic approach. I’m going to do everything in my power to keep a smile on my face and make myself feel good.
I love writing, so starting this blog has been a huge thing to keep me happy and I have some great ideas of how I can branch out with it. I’m really keen to share the stories of other MSers. I tell you time and time again that it affects us all differently, so coming soon, I plan on sharing interviews with others affected by MS.
Through this digital age we find ourselves in, I have realised that I no longer read anymore. When I was a kid, in the school holidays I’d be at the library every other day getting a new haul. I’d complete the summer reading challenge several times over. But now there’s always a Netflix series to watch, a social media notification to respond to or my lives have refilled on whatever mindless game I’m playing. So less screen time for me, in order to give me more time to get lost in a book, which is all I ever did before those distractions existed.
I’m contemplating participating in “Scroll free September”, but depriving myself seems like an extreme thing to do. I’ve realised that I’m so all or nothing about everything and because of that, it always ends up being unsustainable. I end up trying to do something positive in my life and it actually ends up making me unhappy, stressed or left feeling like a failure. What I’d rather do is set some principles around how I use my phone. I’m thinking along the lines of “no phones after 9pm”. That kind of thing. Restricting Netflix binges to a couple of episodes a night. Nobody likes to admit it, but it’s only when you really take a critical eye to yourself that you see how addicted you are to your smartphone. I want my smart phone to add to my life and be useful. Not something that takes over my life.
I LOVE music. Any music. But I’ve realised how much calmer and in tune with myself I am when I listen to classical piano. More of that please.
I love being crafty, and I love being warm. So I’m going to finish my patchwork blanket. I’m so close to it being completed so that has got to be an absolute priority.
And finally, I love learning. I’ve had a couple of Udemy courses sat on the back burner for a while, so I’m going to pick those up once I’ve finished my blanket. I need to get better at doing one thing at a time and following through.
But most of all, I need to get better at doing more of the things that make me happy.
We all should.
I’m really conscious that I’ve not posted for almost a week, and not since my meltdown.
So to confirm, I’m ok. Just about. Ironically after my hysteria of the pain never leaving me, I’ve not had bad “night time leg pain” since. I think the temperature dropping has done me the absolute world of good. I just feel more comfortable. Not all the aches and pains are gone and my ankle is giving me a quite a bit of hassle today but for the most part, I’m ok
On late Friday afternoon I ventured down to London to attend Mel Wells’ Self Love Summit which was quite frankly the best thing I’ve done in a while. I’m experiencing a spiritual awakening of sorts and all the signs for me to attend were there. I was offered a free ticket the week prior, the Hilton Hotel opposite the venue was 41,000 points on their loyalty scheme (I had 41,086 in my account) and the money I’d claimed through my healthcare plan for staying in hospital covered the cost of the train ticket TO THE PENNY! Add to that, during a Reiki healing therapy session a couple of weeks ago, my therapist told me I just needed a lot of love. I kind of dismissed this at the time. I’m happy in my relationship and I’m happy with my friendships. I only considered at a later date that maybe it was a bit of self-love that I needed!
The day itself was incredible, and rather than writing it all up myself, if you’re interested in knowing a bit more about these events I’d like to share the blogs of a couple of absolutely wonderful women I’ve been writing to (I mean Snail Mail!) for some time, and have now had the pleasure of meeting!
I was staying in the same hotel as Laura on the night before the Summit so had the chance to get to know her, and it was so brilliant. She’s an awesome girl and I really feel that this is the start of a beautiful friendship. Read more here.
Becky also has a blog, which is raw and honest. And quite hard hitting. She is incredible. Her blog is truly worth a read as she tells her story and she does it so well. She is the bravest soul I’ve ever met. She’s gone off piste with her blog though for her latest post, and wrote about the Summit which you can find here.
My only key addition to this, is that for the first time since being diagnosed with MS, I didn’t think about the fact that I had it once. More days like that please.
N.B in case you listen to what my dear friend Clare says, no it’s not a Cult 😂 Just a bunch of women trying to find the best version of themselves, whilst also empowering one another.
Tomorrow night, I’m heading down to London on my own. I’m staying in a Hilton (thanks to the copious amount of points I acquire through staying away for work), and on Saturday, I am attending a Self Love Summit, hosted by Mel Wells.
If you read the “off-topic” posts on my blog, you’ll know that last year I read Mel’s book, “The Goddess Revolution.” And it was life changing. Years of yo-yo dieting ended and I started to accept me for who I am. That’s a journey that I’m still on, but as part of that journey, there was the option for me to go to the Summit.
At the time of getting tickets, I didn’t know when I was going to be getting MS treatment, or where I would be at in my recovery. I’d more or less written it off and that was that. Admittedly, I was getting a bit of FOMO, but I also knew regardless of that I needed to prioritise ME.
But on Sunday just gone, a ticket was going for free. With a quick check on train prices and seeing if I had enough hotel points to cover the cost of the hotel (London ones at short notice are generally not very cheap!) I realised that going to The Summit was something that I could make happen. I snapped up that free ticket and tomorrow my adventure begins.
The Summit is billed as “revealing the most unapologetic, untamed version of you.” Or as I like to refer to it, as the authentic version of me.
Empowering women such as Megan Jayne Crabbe and Rebecca Campball will be guest speaking at the event, helping to motivate, inspire and teach you to love yourself that little bit more.
Why do I just NEED to do this?
Well firstly, I deserve a treat after the year I’ve had, don’t you think? But mostly, I kind of feel like I’ve had an identity crisis of sorts. Trying to work out “who Jo is” and “who Jo is with MS” has sent me into a tail spin. Slowly realising it doesn’t actually matter and now trying to accept that, is something I’m working through. For the most part, I’ve got it sussed but I’m still having moments (albeit rarely) where it really hits like a train crash what’s happening to me. And it’s upsetting and scary.
I feel like this year has been the start of a real journey of personal growth and development, and going to the Self Love Summit will be a key part of that journey.
I’ll undoubtedly be back to share my experience after the event, but for now this is pretty much all I can tell you!