Fibromyalgia: Blog series #1

Getting a diagnosis of fibromyalgia feels like a punch in the stomach. It’s not a good feeling, it’s not one of relief or power, it’s essentially a dead end. Or at least that’s how it feels. The doctor will usually suggest medication to treat it, and that’s it, you are sent on your way with the hope that maybe things will work themselves out. Maybe medication will be enough to treat the chronic pain.

Except it isn’t.

I can honestly say that medication is rarely the answer and that’s the reality you are faced with. Sure, it might help take the edge off a little, but for most it won’t completely eliminate the symptoms. So what do you do? How do you cope with chronic pain without it turning your thoughts into negatives? How do you find the motivation to get up in the morning and go to work?

Fibromyalgia is an awful diagnosis. Simply put. You have this unexplained pain day in and day out and there’s nothing you can do to abolish it. You have to just live with it.

But I can’t.

I refuse to simply accept the diagnosis and come to terms with the fact that I’ll never get to the bottom of it. Because I need answers. Everyone needs answers. I’d go insane if I never found the cause to my pain.

Even though I’m straying away from the idea that medication will be a cure or a band-aid solution, I’m not giving up hope altogether. I’m determined to get to a place where my pain doesn’t bother me so much on a day-to-day basis and more importantly I want to get to the root cause of the problem.

There are various ideas on what causes fibromylagia but we are yet to discover a cure. Personally, I believe that every single person who is diagnosed with the condition is unique, and therefore, there is more than one cause. I don’t think its a simple cause where a simple treatment can be made, though. I think it’s something a bit more complicated. Like I said, no two people are the same, and they will often present with different symptoms which are triggered by specific things.

I think with fibromyalgia it’s about stripping back the basics and trying to get to the root cause. I recently spoke to a yoga instructor who believed that the condition is best treated holistically. In the past, I probably would have laughed at that suggestion. I mean, if all it took to heal chronic pain was a diet change and some meditation then we would all be cured by now, right?

Well, maybe we aren’t thinking about it carefully enough. Is there not some truth in the fact that food can act as a medicine? And does yoga, swimming and meditation not alleviate some stress and tension in the muscles? It’s common knowledge that poor diet, lack of exercise, chronic stress and depression can all lead to various problems within the body, so taking what might appear to be simple steps, could potentially make a significant difference.

If you’re like me and you feel like you’re reached a dead end and you no longer see medication as the only answer, then keep reading this blog series. I’ll be trying various things and sharing what helps my pain levels and what doesn’t.

Leave a comment if you have fibromyalgia as I’d love to know your thoughts.

Feeling the fear & doing it anyway

I want to start off by saying that it hasn’t been an easy year for me. Not in any sense.

Sure, it’s had some really incredible moments that I am completely thankful for, but that’s not to say that I’ve been entirely happy.

I haven’t been too happy.

Gasp.

That’s not me being unappreciative or taking things for granted because I really do see the good things in my life. I can see them, feel them, and believe in them.

But that doesn’t mean I have to be happy.

Simply put, things like unemployment and chronic illness tend to make a person just a little bit depressed. Lets be honest, it’s not an easy thing to go through. You don’t just wake up one day and decide, ‘thats it, I’ve had enough. Depression be gone!’

And through some kind of miracle the dark clouds are lifted, the sun beams down on you, and you find yourself smiling uncontrollably at the wonders of life.

No, it’s not easy.

You know what else isn’t easy for someone with severe anxiety? Leaving the house, meeting new people, applying for jobs, and dare I mention speaking on the phone. That’s a big one. There’s something about speaking to a complete stranger through a device that sends me into instant panic mode. I start to sense my voice is too croaky, too loud, too quiet, too dull. And there’s nothing more agonising than the silences.

So I suppose you can imagine just how terrified I felt about volunteering in a charity shop. I’d heard the suggestion a year ago and I thought to myself, absolutely not. No way am I putting myself through the torture of serving customers, of getting behind that till and actually handling money! Just the thought alone made me sweat nervously.

Nope, I wasn’t going to do it.

And after weeks of thinking and worrying and thinking some more, I decided that maybe it was worth a shot. I reasoned with myself by saying that I wouldn’t have to do anything I wasn’t comfortable with. If I couldn’t bring myself to serve customers, then I didn’t have to force it. I’d be ready in my own time.

Surprisingly, my first day went really well. Better than I could have hoped for. I didn’t get behind the till but that didn’t matter too much to me as I’d still done a huge thing by just turning up.

And something really strange happened as well, something I really wasn’t expecting.

I enjoyed it.

Honestly, I did.

I didn’t think I would ever be able to work in a shop and find some enjoyment out of it, but there I was, chatting to staff and customers, and smiling as if I’d just found a £10 note in my coat pocket.

It felt good.

After a couple more days I gained the courage to serve my first customer. It was a fairly easy transaction and made even easier by the way he was so understanding and kind. People can be kind. It’s easy to lose sight of that if you work in retail, or if you work anywhere that involves a good deal of interaction with the public. But there are people out there who will make things a whole lot easier for you, trust me.

Anyway, people have setbacks. I have many of them.

The past couple of weeks I’ve been worrying myself silly over things that I can’t change. Job searching tends to make even the most confident people feel a little discouraged. With each rejection or silence, I feel like a failure. I feel like what I’m doing isn’t enough. That I should be out there, making public announcements on a microphone to anyone who will listen, ‘please hire me, I’ll take anything. I’ll even work for free!’

And its nice to be surrounded by people who care about you when that happens. They’ll often be the ones to reassure you that you’re being silly and completely over the top. It’s not always what I want to hear, I will admit, but it’s what I need to hear.

I’ve got a lot to be proud of. I didn’t let my anxiety drive me away from doing something that I wanted to do. I challenged it. I decided I wasn’t going to let it hold me back from so many opportunities. Now I realise that I can do so many more things than I have ever given myself credit for. Anxiety tends to make you feel like you’re useless, like you simply can’t do things that other people can do so easily. But it’s crap. It’s utter crap.

You’re not less than anyone else because you have anxiety. That’s a fact.

I’ve spent far too long blaming myself and wishing that I’d done so many things differently, when all I really should be focusing on is what I do right now. And yes, I still struggle with serving customers and meeting new people and doing things that I haven’t done before.

That doesn’t make me a failure.

It doesn’t make me useless.

I’m trying, and I think just by trying my hardest, I’m doing more than enough.

My Experience Having A Laparoscopy

As I’m writing this it’s the last day of July and I couldn’t be more happy about that. July hasn’t been the best month for me, so let me just give a little insight as to why that is. Exactly 3 weeks ago I had my first laparoscopy, which also happened to be my first time having any kind of surgical procedure. It felt like a really big thing for me so no matter how many times someone would tell me, “it will be okay,” it really didn’t feel like it would be okay. As someone who has severe anxiety, something as minimally invasive as a laparoscopy can actually seem like the most daunting experience in the world. Yes, you are in good hands. Yes, you know you will be fine at the end of it. But you still can’t help but feel absolutely terrified.

Fast forward to the day of surgery and I was really panicking now. I mostly tried to keep as calm as possible while I was waiting to be called but it wasn’t until the anesthesiologist took me into a room that I suddenly felt like laughing. I suppose it was nervous laughter but it helped all the same, especially when the anesthesiologist joined in and tried to put me at ease. I really can’t thank them enough because they handled it really well and did a great job of trying to keep me calm. In fact, they called me in first because they could see how anxious I was and knew I would want to just get it over and done with. I really appreciate that as sometimes the wait is the hardest part when there’s no one with you to keep you distracted.

It was a really weird sensation waking up and anyone who has had a general anesthetic will know the feeling. Some people say it only felt like they were out for a few seconds but for me, it felt like a long time. I felt like I had the most peaceful, undisturbed sleep of my life. I had blurred vision for maybe 15 minutes so it took me a little while to grasp everything but once that wore off I started to feel anxious again. I started shaking uncontrollably at this point, and the same person who was with me before I went to sleep got me a blanket and stayed with me for quite a while until my heart rate returned to normal. It felt like a lifetime though and all I could think about was how much I wanted to see my partner.

I didn’t feel any pain immediately after waking up, which was a relief. Going to the toilet was difficult and food was hard to swallow but I tried to speed it up as much as I could so I could just go home and call it a day. Seeing my partner walk around the corner was the best feeling imaginable and I felt my mood instantly lift. We chatted for a little bit and then after the nurse discussed a few things with us, I was told I could go home and to have plenty of rest.

So I hadn’t felt much pain at all up until this point. It wasn’t until I had to start walking out of the hospital that I felt the pain under my left rib. It was like having a stitch, only so much more intense. The walk was unbearable and I did have to stop a few times but soon enough I was sat in the car and on my way home. I couldn’t wait to get home. Not to sleep, as I didn’t feel too tired. I just needed to lay down in my own bed. I craved that familiarity of being in my own surroundings.

The next few days weren’t my best, I’ll admit. The pain under my rib was often there, as was the neck and shoulder pain. Not everyone experiences gas pains after a laparoscopy but for me, it didn’t leave until nearly 2 weeks later. I also had pain in my belly button and an ache in my pelvis when I got up and moved. It’s weird not being able to go to the toilet normally or go for a walk outside. You have to let your body heal but mentally you still want to do all the things that you know you’re not well enough to do. In a way, I felt broken.

About 2 weeks later I would say I was back to normal. I could walk without any gas pains, I could go the toilet normally, and everything felt like it was getting back on track. I realised the actual procedure was nothing to worry about and I don’t know why I built up so much anxiety around it. In reflection, that was the easiest part of the whole experience. It was the recovery that was the most challenging. When you’re in a lot of pain you can’t imagine ever being able to get through it or ever finding that light at the end of the tunnel. But you do come out of it. You just need time.

If I’m honest I still don’t have any answers but I definitely feel like I’m closer than I was before and that means I’m closer to getting my life in the right direction. I don’t regret having a laparoscopy because it’s something that needed to be investigated. You can’t put something off if you think there’s a serious problem. Your health is important and you need to take care of your body as best as you can. It’s as simple as that.

 

 

Feel free to leave a comment if you have any questions.

July In A Nutshell

July has been a difficult month for me, to say the least. It’s one that’s been filled with pain, frustration, and confusion. I haven’t really been able to process everything and I think that’s something I’m still struggling with. I feel at a loss, I suppose. I don’t know what I can do right now to make anything better, to make the situation a little less overwhelming.

I use that word a lot. Overwhelming. It’s how I often feel, as though every little thing is just piling on top of me and things just keep being added to the already excessive pile. I feel sooner or later it will overflow and I wouldn’t know how to pick everything back up and carry on.

Adding to that, I’m not sure exactly what it is I want right now. Well, in one sense I do. I know that I want things to change in a significant way. I want to escape from the chronic pain and the worrisome symptoms, the not knowing, the doctor visits, the looks of sympathy, and the unhelpful comments. I want to start again. I want to be able to work and have a job that I enjoy doing, to be able to go out whenever I felt like it, and to be able to smile a lot more than I have these last few months. But I know that I’m not always good at receiving help and letting others in and talking about what’s going on. I assume they couldn’t understand and that even if they did vaguely see where I was coming from it wouldn’t really help me. I don’t always share the same views as other people around me and it feels as though it creates a barrier between us. I can try and see someone else’s point of view, of course, but it doesn’t mean I will ever agree with it. And that’s quite tough.

I used to think that I could try and make myself see things in a more positive light. That if life wasn’t what I wanted it to be that maybe in time it would be okay, that I could make a few changes and then perhaps I would be happy. Now I can’t keep up the optimism. I find myself slipping more and more into a negative mindset and once you’re there, it’s hard to pull yourself out of it. I look around me and all I see is the bad. I want to be in control of my situation; how I think, how I feel, and what I do next. But it feels like my thoughts control me rather than the other way around.

I listen to the endless advice from those around me – to just keep going, to be strong, to fight my way through it. It’s not that I don’t appreciate anyone’s kindness and support, it’s just that I’m really struggling and I’m not quite sure what to do with those words. How can they help me when I feel as if I’m the unhappiest I’ve ever been?

So I try my best to get on with things, to see how it all pans out, but it’s an ongoing struggle. I still feel like I’m lost. I still feel confused. And I still don’t know what changes I can make. I suppose all I can do is try and hope that some inspiration comes in my direction, or that I get some answers soon. I have to hope for something otherwise I have absolutely nothing spurring me on.

 

Is Social Media Really That Bad?

Social media often gets a bad reputation which is understandable when you consider the damage it’s caused many victims of bullying and abuse. It’s a place full of positive, uplifting things (an abundance of dog videos and memes will never go unappreciated) but also a toxic environment for those who are suffering from mental health issues and low self-esteem.

I think, if used correctly, social media is an excellent tool. But how many of us are using it as we should be? Lately, I’ve realised just how damaging it can be. From heavily edited pictures which distort reality to celebrities plugging harmful weight loss products, it’s not exactly a healthy environment. What’s even more upsetting is the thousands of people who use Twitter as a platform to bully others based on their appearance. I see it all the time. It might be a celebrity who falls victim or it could be a stranger who had their picture taken without their permission and finds it floating around on social media with hundreds of cruel messages. Either way, it creates the message that we, as a society, feel it’s justified to “casually” verbally abuse others. I’m sure most of these people would never say those kinds of things to anyone face-to-face, so why is it more acceptable to say it online? And what’s more, why do some of those that preach about the importance of mental health then participate in the online abuse?

facebook-1689891_1280.jpgImage credit: ElisaRiva / pixabay

Despite the toxicity that often emerges on social media platforms, there is a lot of good that comes out of it as well. There are support groups, communities, and those who often like to spread a positive message amongst all of the bad. It’s truly amazing to see more body positivity, women supporting women, and friendships formed. I love the message many of us are trying to spread; to be comfortable in our own skin. It comes at a time when I think we could all benefit from it.

For some people, Twitter can be an amazing place to seek guidance and support. Those who might not have any friends who they can talk to in real life or feel like they don’t want to worry their family might discuss their problems with strangers who then go on to become a real constant support. Online friendships can often be stronger and healthier because these are people who truly understand how you feel. They can be more supportive than those who you know in “real life” as you’ll often feel they want to hear about your struggles and your mental health.

For me, it’s been incredible to be able to talk to others who understand mental health and chronic illness; those who are experiencing almost exactly the same thing. It’s so refreshing to be able to connect with people who you wouldn’t usually meet in real life. And that’s the thing. If you have a chronic illness that restricts how often you go out and meet people or anxiety which can make such a concept overwhelming then speaking to people on Twitter might be the only interaction you have on a daily basis. I know that can often mean the world to some people. Any interaction, big or small, makes us feel more connected. That’s one of the main purposes of social media: to feel connected. I think it does a good job of that.

How I’ve Been Managing Anxiety

I can’t remember a time when I didn’t struggle with anxiety – it’s always been there, bubbling away. And it can often be relentless, cropping up at a time when I’m most vulnerable. When it first started I was only young and I couldn’t really understand what I was feeling. All I knew is it made me cry, shake, tremble. It made me fear everything; the past, present, and future. It consumed me to the point where I dreaded getting out of bed every day. Going to school was a nightmare because I was surrounded by too many people in a place that was simply too big. I longed for the weekend where I could enjoy the comfort of my own company without any intensifying fears.

If I had to describe it in one word it would be suffocating. That’s usually how it feels; like I’ve been thrown into the sea with no life jacket and I can’t swim. In that moment I can’t imagine finding a way out of it. I lose any original hope I had and every thought becomes a negative one. I tell myself I can’t do things, instead of trying. I lose all faith I have in myself; I feel weak and helpless.

But I know that can’t be true. Over the past few months, I’ve done things that I didn’t think I would ever be able to do.

I’ve always had a huge fear of the dentist after some not so good experiences and I went maybe 5 years without setting foot anywhere near there. I also have phone anxiety so that’s something I usually avoid altogether. Recently I called the dentist and scheduled an appointment which was a big thing in itself. And then I attended the appointment and managed to keep my anxiety under control and for the first time in ages I felt quite proud of myself. I’ve never been that calm before.

Even though I’ve had to go to the doctors and hospitals a lot over the past year, it’s something that still causes me a lot of anxiety. I never know what to expect. I’m also scared of being in pain, of not being taken seriously, of breaking down in tears. So understandably, it’s not easy for me to attend any of these appointments but I still do it. I do it because I have to, I know nothing ever gets resolved by ignoring it and hoping it goes away.

The more I do these things, the stronger I feel. Even when I’m having a bad day and my anxiety is all-consuming, I’ve still come a long way. A really long way. And I should be proud of myself for that. All I hope is that from now on I focus more on my progress instead of my setbacks. I’m growing.

 

 

Leave a comment on how you manage anxiety.

To Restart: A Poem

I would like to restart;
press a button and watch
in a mesmerising blur
the old being replaced
with the brand new.
Darkened leaves reappear
with a splash of
fiery red and orange
and the golden sun will
emerge from the clouds,
illuminating the world
for the final time.