Author: Joanna

30 something Essex girl, living in Wigan. Blogging about life with MS, learning to live with it, with occasional off topic bit thrown in for good measure

5 Tips for Supporting a Friend with MS (or any invisible illness)

Monday 3rd December is “International Day of People with Disabilities”. In recognition, my employer asked for five people to share their story. One person a day will have their story featured on our local intranet in the Diversity and Inclusion pages.

Although I have previously written that I didn’t want my “This Is Me” story to be about my condition, I’m still up for raising awareness in any way that I can. So I found myself putting my name in the hat. I suggested I wrote something that would help people when it comes to supporting a friend or colleague who has an invisible condition. I know so many people have just not known what to say or do – before I had MS, I WAS that person.

Here’s what will be being shared on our company intranet at some point next week…

“Back in January of this year, I was diagnosed with relapsing-remitting MS (multiple sclerosis). It was a shock and bittersweet all at the same time. After years of having odd little bodily quirks, I could finally explain them all. Despite such a harsh diagnosis, my future prognosis isn’t bad. I have had the first of two rounds of a mild form of chemotherapy which reboots my immune system. All being well, it will stop my disability from progressing further. I’m due my second round in June next year. What this means is that whilst my condition won’t get worse, I still suffer with those quirks I mentioned. My mind goes blank mid-conversation sometimes. I get pain in my ankle, wrist and thigh when it’s cold. I have a numb tingling sensation in my legs and I’m often fatigued. Some days though, they’re non-existent. On others, it will be all I can think about.

Adjusting to being diagnosed with an invisible illness can be really tough. I certainly have bad days, but with the help of amazing family and friends it’s a whole lot easier. If you know someone with an invisible illness, you can help too. The problem is, sometimes it’s difficult to know what to say or do. So here are my top tips for supporting them!

1. Ask about it

If someone confides in you that they have a condition, they’re giving you a licence to talk about it. Thank them for being open and then ask them how it affects them. It means a lot when someone asks questions to understand the condition more, rather than just trying to avoid the subject. Find out from them what they need from you to help them day to day. Chances are they don’t want to be treated any differently, but there might be something that you can do to make their day easier.

2. Check in with them

I go totally off grid when I’m struggling to cope with my condition. I become withdrawn and you won’t hear from me for days. At some point, someone will notice that this is a bit out of character for me and check in. I’ll admit that I’ve not been ok and they’ll tell me that they are always there for me if I need to have a moan or sound off. Thing is, when you’re in that space, it doesn’t always occur to you to do that. So make sure you drop your friend a regular text to let them know you’re thinking of them.

3. Cut them some slack

It’s typical that someone with a chronic condition suffers with some degree of fatigue. That means that even the best laid plans can go wrong if they’re just too tired to function. Be forgiving if they’ve cancelled that night out for the third time in a row. In work, you might catch them yawning a lot. Go easy on them, it’s not personal.

4. Don’t make assumptions

Every day with a chronic condition is different. Some days you can take on the world and on others you can’t get out of bed. Then there are the days in between. Avoid making assumptions about what your friend, colleague or family member can do. Don’t stop letting them make their own choices and keep on inviting them to social occasions. Sometimes they will accept and other times they might politely decline. But they will always be grateful that you have continued to let them make their own choices.

5. You don’t have to find a solution

With all the best intention in the world, we want to solve people’s problems. But if the top doctors can’t find a cure for the condition, it’s unlikely that you’ll be able to provide a solution yourself. If they want you to give a solution, they’ll ask for your opinion.

Ultimately, the best think you can do is make sure that person feels loved and cared for. They need to still feel like a person, and sometimes the best way of doing that is doing absolutely nothing differently. Find out what you can do to support them but the key is to take their lead. Nobody with a chronic condition will manage day to day in the same way. The only way to find out, is to ask.”

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My insane sanity!

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.

 

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.

 

 

#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”.