Tag: multiple sclerosis

“But you don’t look sick.”

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. 

Going Strong

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! 

Hey there, it’s Yogi (Bear)

Happy New Year! Hope you’re feeling good. Promise me you didn’t say “new year, new me” and said “new year, same old awesome me!”

Anyway, as luck would have it, my endless weeks of fatigue which have seen me not step in the gym for roughly two months has come to an end. So obviously, just as all the usual January hordes are turning up, I get my mojo back. Bloody marvellous. It’s ok though. I have a cunning plan for the next 30 days. THEN I’ll go back to the gym!

Last January, I signed up to Adriene Mishler’s 30 day Yoga journey. Because I never see ANYTHING through, obviously I didn’t complete it. I think I did about three days, decided it hurt too much and I couldn’t make time for it, and gave up. This year however will be different. This year I want to continue to just work on my spiritual, mind and body connection and I feel like Yoga is just another step in that journey. And this year, if I miss a day, that’s ok. I’ll just pick it back up again the next day. No-one, anywhere specified that it had to be completed in 30 consecutive days so I literally have no idea why I put that level of pressure on myself!

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This years journey is called “Dedicate.” Which I fully intend to “dedicate” myself too (I’m here all week!) Today was Day 2 and just like yesterday (and last year) it was really bloody hard. When I was in my late teens and early 20’s, I loved Yoga and was also a huge fan of Les Mills’ Body Balance. I was also about five stone lighter and three dress sizes smaller. And a lot more flexible. And MS hadn’t broken half of my nerves that help with balance!

It’s really bloody hard when you know how easy you have found it historically. It’s really frustrating. Something that I have previously found peaceful and calming is (did I mention) REALLY BLOODY HARD!!!!! Trying to find peace in all that huffing, puffing and complete lack of grace feels pretty impossible.

BUT!

This is a marathon. Not a sprint. Today was easier than yesterday. And my next session will be easier again. I’m on Day 2 of 30. Day 3 of 365. So what if I’m feeling more “Yogi Bear” than Yogi. We go on.

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In other news, I mentioned a few blogs back that I was exploring options to help manage my work-life balance better. Now that it’s agreed, I can say that I’ve compressed my hours. So I will be working four long days with a Wednesday off which will give me a little relief mid week. I start on Monday, and I’m looking forward to seeing how it might help me. Some people have asked me why I haven’t just dropped a day, but that would result in losing 20% of what I earn. Which is a lot! I don’t feel as though I want to do anything quite as dramatic as that just yet. Not until I’ve tried other options. And I really feel like this one will work for me. So I’m feeling quite positive.

I’m due to see Danny (my MS Nurse) in a couple of weeks for my three monthly appointment, and I have my blood test at the same time. I’ve resisted getting obsessed over my lymphocytes up until this point, but I’m going  to ask him where I’m at when I see him. I’m also planning to get back in touch with the counsellor as I want to get started on sessions. Although I feel in such a better place and feel as though I have turned a corner, I feel like I need to tackle any demons that are lurking. I might just be suppressing them.

Finally, I’m so excited to say that I’m going on the next part of my Reiki journey on 19th January. This will enable me to call myself a “Reiki Practitioner” and send it over distance. I’m so excited about this as I’d love to be able to send it to my parents who live a good 250 miles away from me.

All in all, I’m going into 2019 feeling really positive, and I hope you are too!

MS and Depression.

A few weeks ago, it came to my attention that I’m not as ok as I thought I was.

Dave came upstairs to find me curled up in bed crying my eyes out. I always say that he’s the kind of guy that you want around in a crisis, and he was true to form this time. He climbed into bed with me and gave me a big hug, letting me cry it out.

The conversation when I finally calmed down went a little like this:

Dave: “So, what’s up?”

Me: “This. Everything. Why me. It’s not fair. Life sucks. All I do is work and sleep. I don’t want to live like this. And I’ve not actually had a relapse since I found out I was diagnosed. I wish I was still going on, blissfully unaware, because I wouldn’t be feeling like this.”

Dave: “Your body has been through loads this year Joey. We knew it would be tough but it will be worth it in the long run. It’ll be ok.”

Me: “It doesn’t change the fact that life is so boring. I’ve lost my zest for life and I don’t know who I am anymore.”

Dave: “It’s ok. I don’t mind. We’ll be ok.”

Honestly. Always the voice of reason and I don’t know where I would be without him. He’s absolutely right. What’s really getting me down is that I’ve been using lots of annual leave to just sleep. And my weekends are just spent sleeping, apart from running a couple of errands. I sleep, and I work. Not the life I signed up for, and I imagine it’s certainly not the relationship that Dave signed up for. There’s a lot of guilt around the impact on him.

After spending some time reflecting, I’ve come up with some options for how I can make this work as we go into the New Year, but right now, I don’t know the feasibility of them, so watch this space for an update on that.

Other indications that I’m not as alright as I could be is that I have neglected my blog. I just haven’t felt up to writing. A lack of creativity is definitely apparent. I’ve been spending a lot of time on my own. I’m the kind of person that as soon as you text me, I’ll respond within minutes, but I’ve just not been up for getting into conversation. Generally a supportive friend, and happy to coach people close to me through difficult times and give advice, I just don’t feel up for taking on other people’s problems. I can’t be bothered to engage in trivial conversation. I prefer silence. If I’m honest, I’ve just not been feeling like me. I’m spaced out and so tired all the time. Dave’s working away a lot which is making me feel sad because I miss him, but it’s also giving me much needed space on my own which is good for my soul. Apart from the people closest to me, I’m just not feeling very “people-y” right now. It’s nothing personal. It’s just what I’m going through.

On paper, I’ve got all the symptoms of depression.

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Depression is common in people with MS. The first (and perhaps obvious) reason is that dealing with symptoms can really get you down. When people ask how you are you have options. Just gloss over how you’re feeling, in spite of feeling physically awful. Or you can be honest. Either option messes with your head. However you approach it you end up feeling rubbish. If I choose to hide it, nobody actually knows that I’m struggling. But then I’m mad that they’re not being mindful of how things are for me that day (yes, yes I know. Not their fault. I should have been honest.) But if I tell the truth, I risk sounding like a broken record. Because I’m always dealing with something in varying degrees of severity. Even on the good days. I honestly feel like I can’t win!

The second reason that people with MS suffer with depression is because the nerves relating to mood are damaged and sending the wrong signals to your brain. This ends up making you feel depressed for no apparent reason. It can do with this all sorts of moods, not just depression and people with MS are prone to dramatic and unexplained mood swings.

When I last saw Danny (my MS nurse), he gave me the details for an MS Counsellor. Through talking, he suggested that perhaps I’d not gone through a grieving process yet. I need to grieve the health that I’ve lost. Maybe future possibilities too. At the time, I didn’t really agree, but just a few weeks later and I’ve done a complete U-Turn on that. I definitely need to do some work on coming to terms with the past year. Whilst I regularly think of so many positives that MS has given me, I can’t help but think that they’re distraction techniques. So much of my positive approach to what I have been through has been about how I’ve distracted myself from tackling this head on. And maybe a little bit of denial. For a long time, it felt surreal. It didn’t really hit me. I’m thinking about it less now, but when I do think about it, I’m a cross between disbelief and distraught.

So what’s next for me? The medication I’m on for neuropathic pain, is also an anti-depressant. I’ve been in touch with the MS Counsellor and will also explore options through the employee assistance programme at work. I’m finally ready to work through accepting my condition.

 

#ThisIsMe

The cloud is shrinking. Over the last couple of weeks, I’ve felt great. I’m back in the gym and working hard. As long as I keep it static, I’m ok. Too long on the treadmill and that ankle pain flares up. I still have other aches the day after, and they’re not your typical gym related aches, but they’re MY gym related aches. And I’m ok with them.

I mentioned in my last blog that it is now my time to stop dwelling on what’s happened to me, and just get on with life. This week is National Inclusion Week (in the UK) and in the run up to it, at work, there have been requests for people to film segments of video – just a couple of seconds holding a piece of paper saying their name and a fact about themselves. The idea is that we’re celebrating how diverse we are as a workforce. Your sign didn’t have to specifically relate to a protected characteristic (i.e. a disability, sexual preference, race, religion etc). It could be something that you do in your spare time.

I really think that this is a great initiative and I was keen to participate. I was happy to wave the flag for MS and invisible chronic conditions. For one reason or another though, I missed the deadline.

A week or two later, I was approached (along with others) about recording one of these videos referencing my MS (or other protected characteristics in the case of others). And I chose not to do it. 

You might be asking yourself, why would I refuse? I’ve been really vocal and open about my journey. I’ve talked about raising awareness. I want people to have a better understanding and to not feel shy about asking me questions. Why on earth would I pass up the opportunity?

It’s simple really.

I don’t want MS to define me.

I want my #ThisIsMe statement to be something completely unrelated. I want to be the girl that people describe as “you know, the one from Essex” like I’m pretty sure has been the case since moving from down south to up north 8 years ago. Not “you know, the one that’s got MS.”

So here’s my #ThisIsMe statement, for the record:

 I could go on 😉

 

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”.