Tag: mental health

The Impact of MS on Mental Health

It’s Mental Health Awareness Week and although I have talked about MS and depression before, it feels right to talk about it again this week. We also know I like to set the record straight on how soap operas deal with MS, and the current storyline in EastEnders is no exception (I’ll come back to this in a bit).

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It’s not unusual to experience some kind of impact on your mental health when diagnosed with MS. There are a variety of reasons that it might happen as well, which can sometimes be difficult to get your head around. It’s a bit chicken and egg. “Am I feeling down because I’ve got MS, or is MS making me feel down.” Let me explain.
You can categorise the reasons for MS related mental health problems. They are either directly or indirectly related to MS.
Directly related symptoms include nerve damage which means the wrong emotional signals are going to your brain. This means that you could feel sad for absolutely no reason whatsoever. It also includes the psychological reaction to MS. You might feel grief, anger, resentment and uncertainty to name just a few things. Not related directly to MS include factors such as your personality type. That is to say that certain emotional reactions are just who you are. You may also have had depression regardless of MS. The same goes for stress and anxiety. Lastly, you might experience mental health problems as a side-effect of medication.
Roughly 50% of people with MS suffer from depression at some point, but as you can see, the reason behind it can vary greatly. That means that treating it can too. We all need something different. For some people, that’s talking-therapies or medication. For others that’s taking some time out, doing something that sparks you joy.
There’s another symptom of MS called “emotional lability” or “emotionalism,” which is something that I have. If you have either of these things, you’ll find that you have disproportionate or irrational emotional reactions to situations. Something really small might happen that you display excessive amounts of frustration or anger towards. You might laugh inappropriately. Sometimes I cry with laughter then switch to sobbing my heart out. I feel overcome with sadness and I have no idea why.
Prior to being diagnosed with MS, I considered myself to have fairly sound mental health. Sure, I had times when I got stressed and I had periods where I felt down, but for the most part I’d describe myself as a cheerful soul. I rarely felt life get on top of me. I never experienced the “black cloud” over my head.
The first experience I had of “not being ok” was during the period of awaiting diagnosis. The waiting game was horrible. I felt constantly sick. That knot in my stomach. When were they going to tell me what was wrong with me? I felt forgotten. Abandoned. Lost in the system. Much as I feared the inevitable outcome, I wanted to be put out of the torturous game of waiting. Every time my phone rang I wondered if it would be the hospital confirming my fate. I was OBSESSED with the arrival of the postman for the arrival of letters from hospital, with some hint of answers.
And then I got my answers. I won’t lie, I experienced relief. And then I just powered on through. Like nothing had changed, when the reality was, it’s probably the most significant thing that has ever happened to me. I maintained a façade of coping. Feeling ok with it. And deep down I really wasn’t. Everyone kept telling me I was being strong. And in my head, strong equated to still smiling and laughing. Being ok. Continuing to breeze through life. So that’s what I did.
I went through chemotherapy in June 2018 to hopefully halt (or at least dramatically slow down) the progression of my MS. I took six weeks off work to recover and towards the end of that, I experienced my first brush with anxiety. The thought of going back to work made me feel terrified. I didn’t know how I was going to react. I didn’t know how others were going to react to me. I was genuinely scared. This was when I first started receiving Reiki, and to say it helped is an understatement.
Somewhere along the line it all got a bit too much and I finally allowed myself to feel everything that I had been bottling up. I cried and cried. I felt grief and mourned for the good health that I previously had. I felt the guilt of being a burden to work and colleagues, my friends, family and more than anybody, Dave. This wasn’t the life he signed up for. I felt scared for the future. I was in pain and I was furious with the injustice of me of all people having this condition. I envied people that got ill, but made a full recovery. I shut myself off, didn’t feel like going out and spent a lot of time either sleeping or just sat, staring into space. I lost my get-up and go. It felt dark. I was still functioning but I felt numb. I was doing nothing more than going through the motions.

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One day, I had an appointment with one of the MS Nurses, and had a real download of how I was feeling. She’s not a counsellor so she couldn’t help in that respect but she did come up with a magic pill. She told me it would help to ease the physical pain I was in, but would also help to lift my spirits a bit. And it really has. I know when I’ve not taken it, that’s for sure.
Now, I feel that I’m out the other side of that dark time. I still have the odd day where the realisation of the condition that I have hits me like a ton of bricks and I feel like crap. But it’s becoming more and more infrequent. I now accept that some days I’m going to be fed up. But I do what I can to find escapism, whether that be in a book, a TV series, hanging out with Poppy or finding something else that sparks happiness in me.
There’s one other factor that can affect depression in MS patients that I have deliberately held back as I want to talk about it in relation to EastEnders. And that’s that there’s other stuff going on in your life unrelated to MS that’s causing your mental ill-health. I’m hazy on the details as I don’t watch it, so I’m only telling it as I understand it, but in a current storyline, a character with MS takes her own life. The soap describes the storyline as wanting to “explore the impact of MS on mental health.”
I think it’s great that they’re drawing attention to the impact that MS has on your emotional wellbeing. I’ve already said that at least half of people with MS will experience some form of mental ill-health. So why did I say at the start of this blog that I’m unhappy about it?

Dinah with Karen Taylor in EastEnders
Because it’s extreme. Irresponsible even, with 100 people in the UK being diagnosed with MS each week. What kind of message is it sending out about an already misunderstood condition? It’s terrifying enough without a suicide storyline happening in the background. If your only knowledge of MS is someone who is impacted by it so badly that they choose to take their own life, it doesn’t bode well. You don’t know at that point that very few people with MS are permanently confined to a wheelchair. Having said that, even with that knowledge it doesn’t mean that we don’t fear that we might just be one of the unlucky ones. So please don’t scare the living shit out of us unnecessarily.
The thing is, this character has a lot of other stuff going on outside of their MS, as well as their MS being a stage that many will be fortunate enough to never reach. I just don’t think it’s a realistic representation of how MS can affect people mentally. It’s the most extreme example of it. I’m not saying it doesn’t happen. It’s disrespectful to those that do suffer this badly to say it doesn’t. All I’m saying is it’s not the norm. What scares me is that someone newly diagnosed, that doesn’t yet know much about the condition see’s it. What scares me is that the message that sticks around from this will be “person with MS kills themselves because of how horrible MS is.” And that’s not a true reflection on the reality.

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! 

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.