Tag: fitness

MS: Business as Usual

Last time I wrote about MS, I talked about how I was working to be less defined by having it, and the response I got from people was overwhelming, as always. Although I don’t want to have it as the main “thing” that I always talk about, I also recognise it’s why I started this blog and many followers of it are here to get some insight into life with MS, so I thought I’d post an update on things that have been happening in life and how MS has impacted it.

About the title of my blog. I cannot remember for the life of me who it was so I can’t give them the credit they deserve, but they summed up it up both perfectly and hilariously that MS is just BAU*. And it really is. It’s not the new thing. It’s not the main topic of conversation. It’s just BAU.

We’re going through a restructure at work at the moment which has included a lot of people taking voluntary redundancy. I’ve chosen to stay. A huge part of this is that my current employer looks after me so well. Add to that the (admittedly simple) adjustments I need along with a blood test slap bang in the middle of a Tuesday every four weeks for the foreseeable future. Yet I’m not made to feel like a pain in the backside. I wrote a post not so long back about my fear if I ever had to change jobs. I get that any employer would have to make those adjustments by law, but I’d hate to be made to feel that it was done begrudgingly. The other key reason is that I actually love my job. So right now, I see little point in rocking a boat that doesn’t need to be. Granted, it’s an uncertain time. We’ll inevitably have to change the way that we work but how that shapes up remains to be seen.

Whether how I’m currently feeling is being exacerbated by the current situation at work I have no idea, but my fatigue seems to be through the roof at the moment and it’s the one symptom I find hardest to just ignore. Oddly enough, as long as I’ve got something to keep my occupied, I’m ok. As soon as things slow down though, I need some matchsticks to keep my eyes open! This was apparent when I had to take myself off home an hour early on Friday. I’d done everything that I needed to do and I just needed to get home to bed. I’d thought that perhaps I’d out slept my fatigue last Monday. I felt great and smashed the greatest gym workout in a long time! I was back in my happy place with an Olympic bar. On days where my ankle hasn’t been feeling so bad, I’ve even managed to run a bit. I’d crashed again by Tuesday though and I’m just learning to not feel bad about not being so consistent with the gym these days.

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Happy Place!

I saw Danny for my monthly bloods last week. It’s the first time I’ve seen him since the last day of Lemtrada and I was feeling pretty pathetic in a hospital bed. It was nice to see him and have a chat. He was really reassuring and said that I’m doing good. I probably needed to hear that. I have no idea what my lymphocytes (white blood cells) are at though! Many people who go through Lemtrada can get a bit obsessive with it, but I’ve chosen not to get hung up on the numbers. They mean naff all to me anyway since I’m not a medical practitioner and I just trust Danny to let me know if there’s anything amiss. It’s easier to just forget about it and let the people that look after me worry about it!

In other news, I was “supposed” to be doing jury service this week and next. Those that know me and my background will understand why this was so exciting for me. I know you’re not supposed to talk about jury service, however on the basis that the defendant ended up acquitted before we’d even set foot in a court room coupled with the fact that there were no further trials for us, I think I’m pretty safe. In amongst the disappointment I’ve got to admit that there was a shred of relief. I mean – bowel urgency in a court room ain’t gonna be a good look! Plus, with no sign of my fatigue going anywhere, I was worrying about how well I would be able to concentrate on the case. In fairness, I was honest with the woman that looks after the jury early on (she’s got a proper title but I can’t remember it for the life of me!) and she was amazing about how we could manage it. So if you have MS and get called up for jury service, my advice would be to be open and honest. They want to support you as much as possible.

In more positive stuff, I am absolutely LOVING Reiki. I’m going to talk about it at length in a future blog post because it deserves lots of words and attention spent on it! I’ve also finally had the chance to write my blogs for MS-UK, who asked me to guest blog for them about three months ago. In an attempt to redeem myself, I sent them a couple of posts that they could publish. They’re edited down versions of blogs I’ve posted on here, as they only have a 400 word limit. As soon as they’ve gone live, I’ll link them up here.

All in all, I feel like I’m coming to terms with my MS more and more everyday. On the days when I’m not overcome with fatigue, I feel as good as I get. And I can’t complain about that. It’s still shit. It’ll never stop being shit, but I’m starting to notice the gifts it has given me. Which is a story for another time…

 

*If you haven’t got the foggiest what I’m on about, BAU stands for “Business as Usual” and it’s a term used in the corporate working world for you normal, everyday work. There’s nothing special, exciting or exceptional about it. It’s just your average day.

 

 

10 Tips for exercising with 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.

Just to clarify, the mark on my top is water as I’m a mucky pup who can’t eat or drink anything without spilling 😂

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”.

 

The come down.

I’m suffering from writer’s block at the moment. I’ve just not really had much to say or write, but I’ve also been enjoying spending my time reading A LOT! I’ve also been starting to read a bit more about Reiki Healing as I’m so excited to share that all being well, I’ll be doing my Level One attunement on the 15th September!

One of the books I have recently finished reading. I can highly recommend it. It was brilliant!

I know that many people who follow my blog are people who want to know what to expect from going through Lemtrada. With this in mind, I thought I’d give a summary of how things have gone for me over the last couple of months. Trying to get a picture from my other blogs probably gives you more of an idea on how my mood has fluctuated more than anything! I’m moving towards a better head space now which means I’m way better positioned to collate my thoughts!

So, where am I eleven weeks on, apart from sat eating a veggie burger with sweet potato fries and suffering from writer’s block?

The intense “MS fatigue” I was suffering in the run up to  treatment has more or less lifted. I can’t say that there aren’t days when it’s not there but it had got to the point that I was suffering every single day. I’m still shattered though and sleeping ridiculous amounts. I think this is just because my body is working hard to increase the bit in my blood that Lemtrada wiped out. It’s different to MS fatigue. I actually do feel refreshed when I wake up in the morning and getting ready for the day doesn’t feel like the plight it was becoming. As a result of my exhaustion not being even close to what it was, the Cog Fog isn’t so bad. Sure, words are falling out my head like it’s going out of fashion, but I’m definitely finding it easier to remain present in a conversation.

I can count on less than two hands the symptoms I’ve had to deal with as a result of going through treatment. And most have worn off now. For three weeks after I felt like I was coming down with flu and slept a lot. By five weeks after (just before I was going back to work), I started suffering with a bit of anxiety, but that disappeared by being open about it and having Reiki therapy. I’ve had real issues with stabilising my body temperature, but since the weather has cooled down, I feel loads better. It’s difficult to tell if that’s MS in general, Lemtrada, the fact that it’s been disgustingly hot and we’re ill equipped to deal with it in the UK, or a combination of all three. I suspect the latter. I was struggling with an iffy gut every other day at first, but my stomach of steel seems to slowly be working it’s way back to normal!

Then there was the itchy scalp. This still hasn’t really let up and I’ve tried changing shampoo and all sorts. My hairdresser said he can’t see a rash and my scalp looks in great condition. Whatever it is, the occasional anti-histamine when required seems to keep it under control.

​​Finally, there’s my legs. This is really hit and miss. Today, I’ve had no bother from the pain in my ankle in spite of the fact that I’ve been dragged round a car boot sale in the pouring rain. On another day however, with no explanation, it’ll reduce me to tears because the pain is so bad. Or the weakness means I can’t face using the stairs. I’ve started parking on the site car park at work which is making a difference to both the comfort levels of my legs, but also in managing my energy levels. I feel at the end of the day like I’ve got enough energy to go to the gym after work. Or at least I would have if I didn’t have the pain in my leg! I really want to get back to the gym actually. It’s getting me down a little at the moment that I’m in too much pain to go. I’m hoping to try going this week though on the basis that I might be surprised by what I can do.But that’s it.

Tiredness. Dodgy Gut. Flu-like. Anxiety. Unmanageable body temperature. Unreliable legs. Itchy Scalp.

That’s really not a lot is it? Not in the grand scheme of things.

It was getting me down though. To the point that there was a suggestion that maybe I’m depressed. I categorically disagree with this. I’m miserable, sure. I’m not disputing that but do you know what? I have every bloody right to be. I’ve been diagnosed with MS. I challenge you to find someone who wouldn’t feel at least a little bit pissed off!

I think what’s triggered it, is now that I’m through the diagnosis and the treatment, everything has just…stopped I suppose. It’s almost a come down. Not that I was on a high, but I can’t really find the right words to explain it. Things have changed though. Nobody is calling me brave or inspirational anymore so I don’t have to worry about living up to that (I’m ok with this by the way! I’ve said before, it gets kinda annoying because I’m only doing what anyone else would do in my shoes). But life is more or less back to normal now. What that means is it’s time for me to come to terms with everything. I’ve found the trick is just not think about it and to bury my head in the sand but I’m not sure that’s productive. I’m now allowing myself to feel my emotions whether that’s anger, sadness or confusion. A sense of “why me?” This means that emotionally I’m on quite the roller coaster right now. This could be being mistaken for depression.

Just on this point, I’m pretty sure that the place that the suggestion came from was 100% a place of love. I’m grateful for being looked out for like that actually. I’m not dismissing it entirely as depression is a well documented symptom of MS. I just don’t think it’s something I’m suffering from right now. I think I’m just fed up and need to work on my self-care to get me out of that place.

On an unrelated note, someone who didn’t yet know about my diagnosis found out last week. And he gave me the most honest response I’ve heard from anyone. He looked at me and just said “I’m so sorry to hear that Jo. That’s shit innit?” He said the one thing that couldn’t be closer to the truth and he didn’t run scared from it. It was genuinely music to my ears, to get such the response that I got. There was no trying to empathise, and there was no sympathy either. He just said exactly what it is. It just felt so real.

Maybe we can all learn a thing or two from that.

Coffee and Cake is always wondeful therapy!

I’m a f*cking badass!

There’s a moment where you realise that this disease isn’t going to beat you. I had that moment this evening in the gym.

Prior to being diagnosed with MS, I was a reasonably consistent gym goer. I found a love for lifting heavy shit and I didn’t really look back. But then it all just stopped. I couldn’t face the gym. I was mentally exhausted trying to come to terms with the hand that I’d been dealt.

In a bid to reignite my passion, I switched gyms in April, leaving X4L (which quite frankly had really taken a downward turn) and moved to DW, which has now merged with Fitness First.

I was still at X4L though until April but nothing seemed to motivate me to go. That was until the day I somewhat dramatically had a complete melt down and realised that perhaps the only reason my MS wasn’t particularly showing itself physically, was the strength I’d spent the last four years building. Then I got really hysterical, or rather irrational and realised that if I didn’t go to the gym right this second, I would have a relapse tomorrow that would put me in a wheelchair.

Melodramatic as this was, it was probably the gigantic kick up the proverbial that I needed. I found my “why”.

I tentatively began dipping my toe back into the gym in early April, but I couldn’t face the free weights area on my own. I was terrified! I always had so much confidence at my previous gym, but I knew it and I knew lots of the faces. It was familiar. To help combat this, I dragged Lou to a couple of Body Pump classes, but then Clare told me that she wanted to start lifting weights.

Brilliant! This was just what I needed! I needed a project. After four years of having a personal trainer, I no longer need one. I know what I’m doing. So using everything I’ve learned, I have developed a training plan for me and Clare. Having someone to go to the gym with, makes it harder to not bother. I wouldn’t hear the end of it if I skipped a session. Believe me!

So this evening, as Clare and I trained back and arms, I had that realisation.

I don’t lift the heaviest weights in the gym. I don’t have the body of someone that lifts weights in the gym. I don’t count my macros (I’ve learned that it’s ok to just eat whatever you want and it balances itself out anyway!)

But do you know what I am?

I am a fucking badass

I had no idea that I have MS and I lifted all the heavy stuff. Why stop now just because I have a “label”?

So I’m not stopping. Sure, my goals have changed; I’m less bothered about hitting certain personal bests or targets and more bothered about just remaining strong and consistent. My grip has always been a struggle for me. Quite often my grip has hindered me before my strength has. It comes with the condition so it’s time to accept that that will always be a pitfall for me.

Just because I have MS, I don’t have to stop. In fact I can be less tough on myself when I don’t hit that personal best anymore. It’s ok. The fact that I’m even in the gym and lifting stuff that’s not exactly light, is pretty damn awesome.

***According to Urban Dictionary, apparently the first rule of being a badass is not talking about being one. I’ve clearly broken that rule, therefore I’m probably not a badass. But never mind. Because I’m a badass I don’t care what Urban Dictionary says.***

Little Update!

I’ve not blogged for about ten days, which for me is quite a while! I’ve felt like there’s not been much to say over the last couple of weeks.

So what’s been happening?

Last Sunday, my lovely friend Karen ran the London Marathon for MS-UK. As she had a charity spot, she had a £2000 target to hit, which I’m pleased to say she did. She didn’t have the race she’d been planning because of the heat. But she did it! What an absolute champion!

Lou dragged me to Body Pump on Monday, then I spent the subsequent five days not being able to walk. I found this particularly amusing as I’d shared my story on our work intranet in aid of MS Awareness Week. All I could think was that people will have read my story, then seen me walking really strangely. Then put two and two together and ended up with five 😂. It certainly gave me a little chuckle!

The last couple of days, Dave and I have been glamping! When I found out about going for Lemtrada this year, I knew we’d have to get a break in sooner rather than later. We had thought about trying to get over to Athens for a couple of nights, but it’s just not going to he possible. So instead we’ve found ourselves in a “Pod” on a campsite between Blackpool and Preston.

Although the weather was abysmal, it’s been so lovely to just recharge. I actually prefer the bad weather to it having been roasting. Plus, as the weather was bad, it was nice to not feel compelled to do something just because it was nice. I think I needed to just more or less stop!

I’ve had increasingly itchy feet again – you know what I get like when I’ve not heard from my specialists for a bit. Today I came home to some fab news though.

I’VE BEEN APPROVED FOR LEMTRADA!

This is such a relief. I know I got told that the evaluation panel thing is “just a tickbox exercise” but it was still worrying me a bit. So now it’s just a case of waiting (oh there’s a change!) for a date.

On the plus side I’m still avoiding a lumbar puncture, YAY!

Finally, I’ve started reading a book called “The Unmapped Mind.” It’s written by a guy who has relapsing remitting MS, and has also had Lemtrada. It’s a combination of his memoirs along with everything he learned along the way. I’ll be giving a full review once I’ve finished!

“The Fear”

Ok. Confession time.

I’ve gone from being a 3 or 4 time a week gym goer to not going at all for two months.

Wanna guess why?

Nope. Not because I have MS.

Want another guess?

I’m shattered? Yeah well that’s true but it’s only a small part of the reason.

How about, I’ve been too bloody scared!

I’ve been a member of a budget gym for nearly four years but very recently, I cancelled. Sam hasn’t been personal training there for nearly a year (at a rough guess) and despite it’s recent facelift, the place is tired. It lacks a buzz. Although I don’t do many classes anymore, preferring to train on my own, the timetable has gone pretty naff too. If you like spin and boot camp, fill yer boots. Anything else and you’ll be disappointed.

So this year, through our employee benefit scheme, I moved gyms. Incidentallty, this is one that Sam teaches a couple of classes at, and she’s been selling the place to me for months!

I’ve been a member for 17 whole days and today I took the plunge and went.

The point is, why has it taken me 17 days though? I’ve been so excited about joining there, I should have been banging down the door at opening time on April Fool’s Day!

I got “The Fear”. And then I started thinking too much about “The Fear” and ended up in tears after thinking all the irrational things last Wednesday.

It all started whilst I was writing the “My Big Why” blog post. I came to the realisation that I’m probably still as mobile as I am from the work I’ve been doing in the gym for the last four years. I never saw myself as physically strong, but in the time I’ve trained with Sam, I’ve lifted weights I never imagined possible.

Then I started thinking how I needed to get back to the gym. I’ve been in a lot of pain over the last month. By a lot, I mean quantity of pain rather than level of pain. I’ve been getting stiffness and pain in my left knee, sometimes extending to cramp in my thigh. I’ve been feeling a LOT MORE spaced out than I usually do.

It can’t be a relapse, because these symptoms aren’t exactly new. They’re just more pronounced at the moment. Just because I’ve been told I have MS, it doesn’t mean that I’m suddenly in excruciating amounts of pain. Nothing’s actually changed.

Except it has. I stopped training.

So then I started thinking about “The Fear” and that I need to get back to the gym and that’s the thing keeping me physically strong and mobile. Then I got REALLY upset and I couldn’t get past ending up in a wheelchair but I still had “The Fear” so how was I ever supposed to stay strong?!

(Are you following? I’m exceptionally confused myself now, and also getting mad at how ridiculous and irrational I was being!)

Anyway, “The Fear” was replaced by another fear. Fear of becoming immobile (we’ll call this “The Real Fear”).

Because “The Real Fear” had set in, it was time to get over myself and drag myself to the gym. For one reason or another, I had booked this afternoon as annual leave. My original plan fell through, but I decided to keep this afternoon booked off so that I could go to the gym whilst it’s quiet.

So today, I “announced myself” at the gym. All it involved was giving them a number that I’d had emailed to me. Well that was easy enough. I gave her the details, and she let me through the door and promised me that a welcome pack would be waiting by the time I was finished. She directed me to the changing rooms, but apart from that, I was on my own!

Gaaaahhh! This bit was my “Worst Fear”. Wandering around aimlessly like someone who didn’t have a clue. All my usual words of encouragement to others who are first time gym goers went out the window! I ended up tentatively taking two steps into the free weights area and then running a mile, quite literally on to a treadmill instead.

I hate running (that’s how big “The Fear” had set in again), but all the same I ended up doing 25 minutes of HIIT sprints. Urgh. What did I do that for?! It’s enough to put anyone off!

The main thing is, Day 1 is out the way and I feel good. I’m extremely happy that I successfully didn’t fall over my own feet (which is likely to happen at snails pace on a normal surface, never mind on a treadmill), and my legs felt the strongest that they’ve felt in ages. I’d felt really sceptical about them to be honest as I’ve been feeling so weak in that area over the last couple of months.

Today was a huge win and hopefully it’s the start of me getting my mojo for the gym back, if only for two or three days a week.

Next stop, Zumba with Clare and Lou. I bloody hate Zumba and I last time I did it, I fell over my own feet (of course I did!) so this ought to be good.

My Big “Why”

I have been obsessively on a diet for as long as I can remember. I wouldn’t say I have an eating disorder but I’ve certainly had an unhealthy approach to food at times.

Last September I decided to put an end to that after reading “The Goddess Revolution” by Mel Wells. I highly recommend it to anyone that’s struggled on diets or has a love hate relationship with food. It’s a fantastic read and helps you to see how you can change your attitude towards food . You ditch the diet mindset and focus on intuitive eating. Trouble is, as I’ve not been banning pizza and chocolate, I’ve intuitively just eaten a lot of that stuff.

Not great!

Luckily, I’ve only put on about half a stone as a result. But it’s time to heal that.

Mel works on you finding your “BIG WHY”. Why do you want to heal? It’s got to be big and something that you emotionally connect with. It’s got to be big enough to make you want to stop and truly look after you by eating good, nourishing soul foods. And no, I want a sexy summer bod, ain’t enough!!!

For some people, it’s so that they can get a body that will give their unborn child the best start. For others, it’s so that they can lead a happier life filled with vitality and adventure – where they truly love and respect their body and don’t let it hold them back.

For me it’s something else. For me, my “why” is so that I’m strong enough to fight this battle I’ve got. My strength that I’ve built in the gym in the last four years is something I will eternally be grateful for – I seriously question if I’d still be as mobile as I am if I hadn’t built my strength as much as I have done.

This realisation is the immediate kick up the arse I need to get back to training and eating well.

In the spirit of this, I’ve spent the last hour prepping Buddha bowls and I’m off to a new gym tomorrow!

My Buddha Bowl! Wild rice, sweetcorn, edamame beans, roasted broccoli, squash and peppers, carrot and crunchy chickpeas. Topped with a nice cajun chimichurri dressing 😍

Unfortunately, the 10K that I really wanted to run for Wigan MS Therapy Centre this year, isn’t going to happen – there’s no way with going in for treatment I’d be able to be fit enough in time.

For now however – I’m just going to do me, without a diet plan and without setting myself stupid goals that I obsess over and then feel crap for because I’ve failed at them. They make me unhappy and they do not nourish my soul, never mind my body!

Here’s to strength and vitality!