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.
Although I go for appointments every month I only see Danny once every three, and today was my day to see him. The last couple of times I’ve been to see him I’ve been feeling pretty fed up, but today it was nice to be able to go in with a smile on my face.
I vowed not to get too hung up on my lymphocytes (white blood cell count) because it’s normal for it to fluctuate month on month. There are also theories about the slower it building up, the more effective the treatment. I didn’t want to get obsessive about that and wanted to do my best to remain calm and to just let Danny let me know if there was anything to worry about. I did however give in today. After a bit of a cold that I recovered better from than the rest of the family over Christmas, I was a little concerned and it made me want to check in.
My white blood cell count is at 0.6. For the average person, that’s rubbish, but for me, that’s good. The idea is that they get back up to 1 (which is the low end of a normal person) in time for the second round of treatment this year. So six months on and I’m just over halfway there which is a good sign. I’m glad I gave in and asked!
I’m feeling good so far this year I don’t tend to prescribe to the whole “this is my year” vibe, but I actually feel like this year could be. Who knew?! Certain aspects of my life feel a little odd at the moment but they’re definitely not dulling my sparkle, which is all I can ask. All in all, there’s no January blues to be seen here, and I’m feeling really uplifted.
I’ve started my new shifts at work now too. Today’s my second Wednesday off since going on them but it’s way too difficult to tell if they’re working for me yet. Surprisingly though, working until 6 is not as grim as first anticipated. Last Thursday and Friday it would be fair to say that I was just as bloody knackered as usual, but after 18 days off over Christmas it’s no real surprise. So I’m not calling it a failure yet!
For anyone who isn’t a friend of mine on Facebook, you might not know that I have been studying an HR qualification – Advanced Employment Law. The assignment was due around about the time that I went blind in my left eye, so I ended up deferring it. That was 18 months ago. The CIPD (who I studied with) have been great and continued to let me defer it, but in October I decided that after roughly 15 months, I needed to just knuckle down and get it done. I found out on Friday that I’d passed it which I’m over the moon about. It’s a stress off the list and it’s another string to add to the bow. Prior to being diagnosed I was really keen to pursue a career in HR case management. It’s still not a complete write off, but I guess my desire to further and develop my career is not a priority at the moment. I’m really just happy doing a good job in my current role in Learning and Development. MS had made me realise that a career isn’t the be all and end all. And at only 32, there’s nothing stopping me picking it back up again when I feel called to do so.
I feel as though I’ve spent my life developing myself academically, and right now I’m enjoying developing myself in terms of who I am and how I am. I’m enjoying pursuing mindfulness and meditation. Exploring my spirituality. On Saturday, I’m doing my Second Degree Reiki which will make me a Reiki Practitioner and that’s really exciting too.
When people ask me how I am, I often say plodding along. But right now, it’s fair to say I’m skipping!
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
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.
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.
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.