Tag: happy

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.

 

The come down.

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!

One of the books I have recently finished reading. I can highly recommend it. It was brilliant!

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.

Tiredness. Dodgy Gut. Flu-like. Anxiety. Unmanageable body temperature. Unreliable legs. Itchy Scalp.

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.

Maybe we can all learn a thing or two from that.

Coffee and Cake is always wondeful therapy!

Autumn is coming.

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!

Photo Credit: Starbucks UK

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.

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One of the most beautiful pieces of music you could ever listen to

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.

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My blanket! Each patch is representative of one week in 2017, and each stripe is a day. I picked the colour based on my mood.

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.

 We all should.