6.50 – Wake up
Really don’t want to get up today! I knew I’d pay for last night’s outing but I’m off work tomorrow so that’ll get me through the day! I do my usual body scan to see what’s hurting and what’s not. There’s a little twinge in my ankle but I think after I’ve walked about a bit it should be ok!
7.45 – Arrive at work
I’m on my own for most of today, so hopefully I’ll be reasonably busy to keep me occupied and symptoms at bay!
10.30 – Ankle
This flipping ankle of mine has flared up again. Oddly, it’s actually better in shoes with a small wedge, but I’m in flat shoes today.
1.00pm – Dinner
I have a flick through Facebook on dinner. When I first got diagnosed with MS I joined loads of groups then proceeded to leave them all. I’ve rejoined one called MS-UK though and it’s really good. It’s a great place to check in about random symptoms and knowing if that’s MS or not. Today I’ve learned that my having a constant need to itch it totally related to MS!
6.00pm – Out of Office
That’s me done until Thursday now, so out of office is on and I switch off the alarms on my phone at the same time, otherwise I’ll be getting woken up dead early.
6.30pm – Home
I’m knackered and I strongly debate getting a take away. I really cannot be bothered to cook. I end up making a one pan rice thing though. There’s enough for three days too so I won’t have to worry about cooking for a couple of days.
7pm – Mail
I’ve come home to not one letter from the hospital today but five! The first one is to cancel my next nurse appointment, the second is to give me my blood forms for my next blood test, another two are more appointments and the last is from my consultant summarising my annual check up last week. All was well and no major concerns. My 25 metre walk took six seconds longer but I don’t think that’s a concern. Last year I tried really hard feeling like I had something to prove so I probably almost sprinted! He’s also recommended I increase my Vitamin D to 5000iu a day. To put that in a bit of perspective, the High Dosage off the shelf Vitamin D tablets are about 1000iu.
8.30pm – Bath
The weather has been cold and horrible today. When I get that cold, I struggle to warm up and that’s when the twinges and cramps in my legs start. The reality is, I’m pretty lucky – I can move about like normal (with the occasional hobble) and apart from my ankle, the worst it is is discomfort – not real debilitating pain.
10pm – After Life
In bed and finishing After Life – the new Ricky Gervais series on Netflix. Definitely watch it! It’s brilliant. Whilst watching, I give my legs some Reiki in the hope it’ll ease some of the cramping and restlessness.
11pm – Lights out
Time to go to sleep. Today’s not been a bad day in terms of fatigue – just slight dull aches and discomfort in my body.
As March is MS awareness month, I thought I’d write a series on a week in the life of an MSer. I’ll write everyday but I might not get them posted everyday but I’ll do my best!
6.40am Wake Up
Although I feel groggy, there’s no aches this morning which is a relief as my ankle has been giving me quite a bit of hassle over the last few weeks.
8.02am – Arrive at work
Get into work and log on. Catch up with a couple of colleagues about how my weekend was. We just slept a lot this weekend which was much needed!
9.30am – Toilet Trip
Luckily I’m like clockwork in the toilet department. Because of certain nerves that are damaged, I don’t usually realise I need to go for a number two until it’s VERY short notice 🙈
11am – I need something to do
I’ve run out of stuff to do. And this is when my fatigue really sets in. Even though I’ve slept all weekend I’m feeling tired. Fatigue always gets worse when I haven’t got stuff to distract me from it.
Midday – Found stuff to do
I’ve managed to find something to keep me occupied and I’m feeling better for it. It’s a bit early for dinner though. I work longer days so although colleagues are going for lunch, I’ll probably leave it another hour or so
1pm – Lunch
I take my lunch on my own – the time on my own helps me recharge my batteries. I tend to switch off with a book for half an hour. I never used to take my dinner and I was really struggling with fatigue. So I’m now trying to behave myself and actually take my dinner break!
4.30pm – Final Stretch
I always used to have finished work by now, but I’ve changed my shift pattern this year. I now work four longer days with a Wednesday off. It’s really working for me, having that rest in the middle
6pm – Finished!
Today has been a good day but it’s not done yet. This evening I’m heading over to an Essential Oil and Chakra course. I’ll grab food on the go.
9.30pm – Finally home
It’s been a really long day so I’m straight in my pyjamas with my feet up catching up on MasterChef! I’m starting to feel the tingling a bit more prominent in my feet and have a bit of restless legs. This is totally normal when I’ve been really busy all day. No pain though. I’ll also take 4000iu of Vitamin D.
10.40pm – Sleep meditation
My “sunrise/sunset” alarm clock goes off at 10.45pm so it’s time for a quick 5 minute meditation which I can guarantee will send me to sleep!
I read an article earlier today which raised the point of being asked to give up a priority seat on the train. It stirred something in me and I felt the need to share my take on this story.
Not long after I was diagnosed, I was on the tram in Nottingham during rush hour. I was knackered and my balance isn’t the greatest – especially on the tram! I also struggle with sensory overload and I’ve found that crowds, like when you’re squashed in like sardines, really unsettling. I’ve come close to experiencing panic attacks in those environments. So on this day, I chose to sit down in the only available seat. A priority one, which we all know are for disabled people, pregnant women or children. If we are sat in one, we know we should move for someone that gets on that needs that seat more than us.
I really needed that seat that day. But someone got on with crutches and a broken leg. So I immediately got up and let them sit down. But the question is, should I have? But then how do other people react to that if I don’t? People certainly look at you with a certain amount of judgement.
Recently it was brought to my attention that someone had questioned the fact that I park on site at work but I can also drag myself to the gym. Which in fairness I haven’t done for a while as I’m struggling with fatigue. Again, it’s that same judgement as on the tram. At work, we’re only allowed to park on site permanently if we are working a late shift, or if we are a blue badge holder. The alternative is that we park a short walk away on the Bolton Wanderers stadium car park. It’s roughly a 7 – 10 minute walk. No, I’m not disabled enough for a blue badge and I wouldn’t want to be disabled enough for one. I wouldn’t wish that upon myself or anyone. But what I can say, is I wouldn’t in a month of Sunday’s park that far away from my destination anywhere else. It hurts me to walk continuously for anything more than 5 minutes. The pain varies. Some days it’s like my calves are on fire, on other days my right ankle is really tight and causing a lot of pain. If it’s not that, I’m just bloody shattered and it’s a walk that I just don’t need. My legs feel like they’re being dragged through treacle.
But back to the gym. It’s not like I’m running on the treadmill. In fact I barely go on the treadmill. If I am in the gym, I’m generally lifting weights, in an attempt to keep my strength up. As it tends to be static, it doesn’t cause the same pain as walking can. And if I’m having a bad leg day, I just work the top half of my body. If I’m tired, I just don’t go to the gym but might do some yoga at home. The bottom line is, if you don’t use your limbs, you might just lose them.
The point is, when you have an invisible illness you’re constantly being judged. Yet it feels as though no-one takes the time to understand. Choosing to remain positive about your condition can be a poisoned chalice too. Because if I’m smiling, I surely can’t be struggling, can I? Yes. Yes I can.
Actually, “how can you go to the gym, but need to park on site?” is an absolutely fair question. Without being in my shoes, I wouldn’t expect you to understand. Same as the priority seating on public transport. The message to take from this blog, is if you have a judgement about someone, seek to understand. And that’s whether it’s about an invisible illness or otherwise.
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”.
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!
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.
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.
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.