Fibromyalgia and Me

In the first few months of this year, I was struggling with something that I didn’t want to speak about. A few years ago I broke my spine and in theory, it should have healed in 6 weeks and been a lot better within a few months. Then it didn’t… I had physiotherapy, acupuncture, had a routine by the rehab team, spinal injections the lot. It didn’t get better.

Test after test showed nothing, I was exhausted and in pain which was taking over my entire body. I was told that the spine wasn’t the cause but why did it hurt so much? I was absolutely miserable. Then I watched the Lady Gaga documentary Five Foot Two and it changed everything. It all clicked into place, I had Fibromyalgia.

The NHS website describes Fibromyalgia as:

Fibromyalgia, also called fibromyalgia syndrome (FMS), is a long-term condition that causes pain all over the body.

As well as widespread pain, people with fibromyalgia may also have:

  • increased sensitivity to pain
  • fatigue (extreme tiredness)
  • muscle stiffness
  • difficulty sleeping
  • problems with mental processes (known as “fibro-fog”) – such as problems with memory and concentration
  • headaches
  • irritable bowel syndrome (IBS) – a digestive condition that causes stomach pain and bloating

One of my best friends, Sarah, also has Fibromyalgia, she’d hinted it was something I should look into but I didn’t want to face it. I didn’t want a chronic illness (I know, logic wasn’t working here). Until one day I went to see the kindest doctor I knew and broke down. I told her every ache and pain, the tiredness, the stress. The fact I was hiding from everyone.

It’s not easy to get a diagnosis, there’s not a blood test or a scan. I was referred to a Rheumatologist which had a long wait. I took the day off work for the appointment and went with my Mum. I was an anxious mess, what if he didn’t believe me, but what if he did? It’s a hard set of emotions to explain.

I shouldn’t have worried, my doctor was incredible. We had a long chat and he checked the key points on the body which would lead to a Fibromyalgia diagnosis in combination with other factors.

The thing is, without Lady Gaga (and my friend Sarah) I probably would have had no idea what was going on with my body. More importantly, seeing people who are so successful (Gaga) and kind (Sarah) but still living with this condition gave me hope. Hope that I’d manage all this pain and anxiety, that I could still be a boss babe despite it all.

I’m hoping that in future I’ll be a lot more comfortable to talk about living with Fibromyalgia. It’s taken me a long time to process and feel comfortable about it myself. BUT I am still me, I still achieve what I want to and I still kick ass.

Thank you so much for reading!

Does Positivity Work With Pain Management

Does Positivity Work in Pain Management?

Hello, my lovely readers!

Today I want to talk about managing pain. It will come as no surprise to my regular readers I think about this more than most people after an accident a few years ago. I live with chronic pain and most people don’t know when they meet me it can be pretty surprising because I’m very positive as a person. And that’s central to today’s post, does positivity work?

I’ve met with a lot of doctors and multiple times I’ve been told ‘your positive attitude will pull you through pain’. A few years ago I would have scoffed and I definitely think this doesn’t apply to every situation. When I first broke my back positivity wasn’t happening, I was in agony and when I wasn’t I was asleep. Then it came to recovery and my attitude did play a big part.

In Recovery 

This was probably the hardest time to be positive. There were a lot of things up in the air at this time, I was obviously in a lot of pain and having to navigate what was going on. That said trying to keep some positivity was important, particularly in physiotherapy because that shit can get tough! I kept focused on getting better and other positive things and it definitely helped.

In Diagnosis 

Diagnosis was weird, I was happy to have an answer, horrified about what it meant for me and wanting to look at what I could do next. It was a mix of emotions. No matter what I had this determination not to give up, I had to still live my life. I got told time and time again the determination and all the positivity I could muster would get me where I wanted to be.

In Life

Ah life, it does like to give you a kick when you don’t need it. Life is hard, people try and say it’s not but let’s be real. So, staying positive in life when your body hurts all over? I take it one day at a time. That’s honestly it. The only future things I try to focus on are things I’m looking forward to, I try and write down one thing a month and when I’m in a lot of pain have the mentality that this will pass and once it does I’m a bit closer to the thing I’m looking forward to.

 

So, yes I do think positivity plays a huge part BUT having time to be upset, to struggle and to be furious is a big part of recovery. Do I have days where I’m pissed off or I cry because things changed? Of course, I do. Sometimes I have weeks where I feel this way. THIS IS NORMAL! That said, I do feel that, if and when you can be trying to be positive is important.

How do you stay positive? Let me know in the comments below!

Pre Hospital Nerves

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Tomorrow I’m going to be going to the local hospital to be put under and have spinal injections. No biggie right? Wrong. To say that I’m nervous would be an understatement, I’m pretty damn terrified. I’ve never been put under, never had any kind of procedure like this. In almost 2 years since breaking part of my spine, I’ve been awake and often without pain medication for everything. This could work, be great and be the thing that I need to stop the pain I live with every day and allow me to be able to get on and do more. While I’m excited at the prospect I’m also incredibly nervous and feel on the verge of a panic attack whenever I think too much about it. So while the blog and my Twitter presence might be quiet over the next few days I’m really, really hoping I can have som positive news in a few weeks when it’s had time to work. Fingers crossed.

Living with Chronic Pain

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For the past year and a half I’ve been living with moderate to severe back pain. By definition this now means that I’m living with chronic pain, there’s no break from it, no rest , it’s just a constant part of my life. Living with chronic pain is not something that anyone chooses, in my case, it was because of an injury. We’re still not sure about the damage, I’m booked in to see another specialist and have another MRI scheduled.

I’ll say it once and I’ll say it again, it’s all about good days and bad days, as many illnesses are. On a good day, I might be able to do a light workout, walk around and the pain is just background noise. On a bad day, it’s like someone is hammering on my spine, the smallest things will hurt and climbing stairs can feel like Everest and when it’s at its worst I can’t feel much in one leg. I might have to take a crutch when I go to an event. I take my medication but it doesn’t even skim the surface, to say that it’s frustrating is an understatement.

But what’s it like to live with chronic pain? Well, it’s definitely not fun, but I’m always aware that my injury could have been much worse. I’m walking, when I was incredibly close to losing that all together. So I’m always aware of that but living with chronic pain means a lot of doctors appointments, a lot of tiring discussion, repeating yourself, physio and medication change after medication change. It’s not pretty, but for a lot of us, it’s just life.

Some people might not understand why I’m broadcasting this, why I’m letting myself possibly look weak. I don’t think that’s it though. I don’t think anyone who keeps fighting is weak and that’s what people with chronic pain do. We go to work, we live our lives the best we can, we just get on with it and that’s the simple truth of living with a chronic illness. Even when the pain is the worst it can be we carry on as best we can. That is what living with chronic pains is like.

Spine Update

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It’s been a while since I’ve posted an update on my spine. For some of my most recent followers (there are now 400 of you who receive emails from me!!), you may not know what I’m talking about or why my spine is so important. Back in April 2015 I took a tumble off of a friends horse and long story short I ended up a compression fracture (think a crumble) of one of vertebrae and possible damage to three others. The treatment I received wasn’t great, particularly from the emergency team when I was bought in in the ambulance, who also didn’t find the fracture for 2 weeks, meaning in that time I could hve easily done more damage and been paralysed. Fun. So I’ve been in spine recovery since then and had multiple appointments, doctors and 5 different hospitals in London, it’s all gotten pretty normal to me.

Tonight, however, I got to meet my first GP for the first time. The pain in my spine has been particularly unbearable in the past few months because I’m now working full time and commuting, meaning I can’t take super strong medication. I knew something wasn’t right so off to the doctor I went. I’m used to it being passed off, ignored or being given ANOTHER stack of medication to try, although I was pleasantly surprised.  She was brilliant and took it incredibly seriously listening to my concerns and what I would like done. I’m now on medication that is better for me in the long run, am booked into an x-ray tomorrow and will be sent to a specialist back clinic to see where to go from there. I don’t think I’ve ever felt so optimistic about my back.

As always I’ll keep you all updated about anything that’s going to be done/is discovered. For everyone that has sent me messages or commented thank you so much, those messages keep me going on bad pain days!

Fighting Fit: When Your Body Won’t Cooperate

Fighting Fit- When your body doesn't cooperate

It might have been well over a year since I broke my spine but sometimes it throws a bit of a fit. I’ve been really busy for the past few weeks and travelling to things, boxing up the flat and all that jazz, meaning that I’ve put quite a bit of strain on my back. This evening I’m sat with a big fluffy pillow resting, writing, reading and just feeling a bit frustrated. I’ve come a really long way in the past year but sometimes I try and do too much and pay for it later. I don’t think there’s anything more frustrating than when your own body lets you down.

I’ve been thinking a lot about the accident and my injury lately, more than I normally would. With the warm weather coming and my friends heading to fun days out, theme parks and long walks I can’t help but feel a little jealous. It does still get to me but more than anything I get really self concious about it in public. There are still times when I get a limp on my left side because after doing too much I’m in a lot of pain or my leg will start to go numb. When I go to Comic Con or any big event like that, I sometimes need my crutch just to relieve some of the pain. As someone who wants to be seen as strong, who is used to getting up and getting on (just like getting up straight after I fell) it’s hard to let people see me on the days when I am a little more vulnerable. This is particularly the case when I’m getting to know new people, such as at my new job.

That said, I know that these frustrations are just a part of recovery and of having to take things one step at a time. I found a lot of comfort in a TED Talk I watched yesterday (click here for 7 TED talks you need to watch!), it reminded me that while my body is still working hard and healing, it’s not the only thing I have going for me. My body being in pain and breaking took things from me, but it gave me opportunities too. It taught me a lot about myself and what I want, it taught me to appreciate every step I take because I could so easily have lost the ability to walk.

In all of this, the good days, the bad nights, the medication changes, the occasional limping and the jokes that I make to make others more comfortable I realised that I need to keep my mind fighting. I can’t let myself go into a place of wallow and self pity. I can’t let myself give in when I’m sick of physiotherapy or don’t feel like going to the gym or when the doctors try and palm me off with silly answers. Keeping my mind strong is what will, in the end, keep my body fighting, even on the worst days.

Sunday 7 – 7 Things I’ve Learnt Since Breaking My Spine

I’ve been feeling fairly emotional in the last few weeks about today. It’s been one year since breaking my spine and I just feel kind of weird about it. I broke down in tears after a particularly bad pain day, because I’m still in all this pain a year later. I just felt so fed up but then I had a hug with Ali and he reminded me of what I’ve been saying to myself for the past 12 months. I may be in pain but I’m still here and I’m still walking. What happened to me was bad enough but it could have been a lot worse! I’ve also really grown as a person in the past year, my opinion on life has changed and I’m truly grateful. I wouldn’t go as far as saying that I’m glad it happened, it changed a lot and I didn’t have the best year BUT I am really proud of myself, how I’ve reacted and what I’ve learnt.

You can have all the ridged plans you want, but life doesn’t work that way.

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Before the accident, I had a plan of how my life would go and it would go that way. I was like I’ll graduate then and I’ll go straight to my masters, then my Phd. I’ll have a house by this time, a dog, a child, another child, I WILL HAVE CONTROL. I learnt after the accident that life can throw ANYTHING at you, there was a point where I physically couldn’t walk. Of course, I didn’t plan that, no one plans almost losing the ability to walk. It made me realise that I can’t have this idea of infinite control, so I’ve let go a little. Things will happen as they do, I only have so much control.

Stop being so hard on yourself! 

Recovery was hard, super hard. I constantly get told by my physiotherapists, pain specialists, lecturers, family, Ali that I need to stop being so hard on myself. They’d remind me all the time this wasn’t a small break, this was a huge part of my body trying to fix itself. So what if I put on weight, if I didn’t get the top grade in my class. I realised striving to be great is good but I don’t have to be perfect all the time.

The human body is a beautiful and amazing thing.

For a long time after the accident and sometimes still now I resented my body. I hated that it had broken in such a simple fall, I hated the stretch marks that had bloomed all over my thighs, I hated the fact people commented on how much weight I’d put on and I hated that I didn’t fit into any of my clothes. I had a realisation at a point that I just thought my body has been doing so much work. It’s literally been healing the main pillar in my body that hold everything together, that’s amazing.

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When you’re sick enough, you can cope with your hatred of needles/hospitals/ claustrophobia. 

I still hate needles, I will always hate needles BUT when you’re sick enough (like when I was in the hospital earlier in the year) you get on with it. I still don’t like hospitals (who does) but now it’s just another place I have to go sometimes. I won’t lie having my MRI and CT scans were pretty nerve wracking and claustrophobic but the people running them understood that. Basically you can get through a lot more than you think you can.

The gym is better than any therapy session and any religion. 

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If you’d have asked me a year ago about loving the gym I would have laughed at you, now I’m stressed when I CAN’T go. The gym is a love and an obsession and I can’t wait to get back into routine and slowly keep building my muscles and be in so much better shape than I was a year ago.

It’s ok to have days where it all feels like too much. 

You’re only human, you need these days, it’s okay!

The people who stick around are the ones that are meant to be there. 

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My relationships changed a lot after the accident, I lost a lot of people and I gained some others. More than anything I learnt that the people that are meant to be there will be. I also learnt that some people are in your life for a certain amount of time and that’s okay too. I’m a firm believer in everything happens for a reason.

Why I’m jealous of YOU at the gym..and it’s not the reason you think

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As all of you know, in the last 5 months I have become a gym bunny. Even though there was  break when I was sick, I’ve gone back to the gym and I’m hungry and obsessed to get back. After going on Tuesday, I spent the week waiting for Sunday morning so that I could go again and now I’m (hopefully) going tomorrow as long as my migraine disappears. I have noticed though, that sometimes I look around and feel myself getting a little jealous.

Now, I’m not jealous of people with beautiful athletic bodies, those who don’t sweat when they exercise or look endlessly cool.  I’m not jealous because I want the results without having to work hard. I’m jealous because their bodies work and mine doesn’t always behave. BUT at the same time, I’m learning to love and worship my body that literally had to rebuild a core part of itself, and know how lucky I am to be walking.

I get a little anxious and self conscious at times, not at all because of the way I look, after all the gym is where people go to work on themselves. No, I feel self conscious because of how much slower I am than others, and how little I can do because of my spine. For me, doing an hour at the gym is another small step towards normality for me. An extra five minutes on the treadmill for me is a huge thing BUT when everyone in the gym wants to go on the exercise bikes at the same time (positioned exactly behind the treadmills and therefore with a full view of my bum) and I’m still just able to do a walking pace, and a fairly slow one, at that. I do feel a little awkward I want to shout at them, ‘I’m in spine recovery, I’m not pathetic I promise!, I’m not just lazy’ because this is how I fear others see myself.

I try and tell myself not to care, that most of it is in my mind  and who actually cares what I’m doing? It might be silly but these thoughts go around in my head sometimes. Then then evolve to me wishing that I was fully recovered and I could run or lift a weight that was a ‘real’ weight rather than the tiniest ones that are there because they’re the only thing I can comfortably lift.

There will be a time where I’m a lot better and that’s happening slowly, just under a year ago I had to have help to get up one step and a small set of stairs to my flat were a huge problem. So the fact that I can go to a gym and try and do some exercise is incredible, and I know that. But sometimes, just sometimes, the green eyed monster will rear her ugly head and make me feel a little down, I know that’s normal and one day I’ll be able to throw her off my shoulder.

 

 

Anxiety and Partying

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The last time I had a night out was for my 21st birthday in September, exactly 6 months ago today. Now it’s not because I’m just a total hermit who hates fun. There are so many reasons I don’t go on nights out. It’s mostly because of my spine as well as the fact that as I’ve grown older I’ve got over the whole ‘let’s get wasted and then feel awful in the morning’ thing, which I was never really into anyway.

I don’t really drink anymore partly because I can’t mix large quantities of alcohol with my pain medication, and I do NOT want to go without that when I’m trying to sleep. The other half is that I’ve learnt from the past that when I’m anxious or depressed I use alcohol in a bad way, I drink and drink and drink until I don’t feel my emotions anyone or the depressant side of alcohol makes me feel worse. A lot of people forget that alcohol is a depressant.

So as well as physically not being able to spend the night standing and dancing in bars, mentally my anxiety makes it really difficult. I’ve had many people tell me I’m ‘letting’ anxiety rule my life, which hurts more than anything. If I let me anxiety rule my life there would be a week or two where I wouldn’t leave my house. Just going about my day, going to work, uni or just popping to the shops can sometimes feel like the biggest mountain.

Tonight, I have been invited to go out with a group of people for a friends birthday. While I know I won’t be going to the club, just going to her house for a get together, being social and around people I don’t know fills me with deep anxiety. The anxiety that panics over what to wear and if I look stupid, if anyone will speak to me or if I’ll do something or say something stupid. The anxiety that takes over my normal brain and runs riot with fictional scenarios. Sounds fun having my brain, right?

I think the worst thing is that for the people I used to go out drinking and dancing with they see a change that isn’t always understood. Normally people think that I don’t want to bother to do anything or that I don’t want to be around them anymore. It’s not the case at all, as I’ve said there are a lot of things I still can’t do, and there are also things I realised about myself in the past year.

I don’t miss drinking to get drunk, I don’t miss paying £7 to get into a packed nightclub and have boys try to grope me and I don’t miss having to come home alone at 1am. I don’t know if this is because I’ve changed or I’ve just let myself be who I am and not care. I like to go out to dinner somewhere fun, get a hot drink with someone , going to the gym to build up my muscles again. I’d rather spend my money on books or pops or going to Comic con. I like to spend my time working on my blog, writing a novel or performing music. Oh and I love to read, books have been a constant companion for me when my spine really tries to hurt me. That isn’t to say I judge anyone who likes to go out, I’ve done it! This is just how I feel about having fun myself now.

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Where all my money goes!

I wanted to write this post not only to get my thoughts on a page (and possibly avoid my dissertation), because I wanted other people to know that it’s ok. I know for a fact there are a lot of people out there who also don’t like clubs and would prefer not to spend their hard earned cash getting hammered because it’s really hard for them. I’ve been there, when my flat felt like the only place I could feel remotely calm and safe and that’s ok. Anxiety and Depression are really shitty illnesses that can make even the simplest of tasks feel impossible.

So wish me luck for my first ‘night out’ without Ali or my Mum in 6 months and here’s to hoping the anxiety stays at bay so I can celebrate with my friends.

The Little Mermaid Returns

I’m sorry for the lack of blogging yesterday, I was reading the amazing Suicide Notes from Beautiful Girls which I can’t wait to review because it was absolutely incredible. I’ll leave you with that because that’s for another blog completely. I wish I was writing to tell you about a new Ariel film, because that would be one of the best pieces of news this year. The mermaid I’m talking about is me. I don’t have flippers but as a kid I might as well have done. My poor Dad spent hours and hours trying to teach me how to swim on top of the water but I just never liked it. Instead I would race around the bottom of the pool getting as deep as I possibly could. So when I started only swimming under water as well as the singing thing and being obsessed with Ariel my nickname came about. But what does that have to do with today?

Today, something awesome happened. After three months I finally got to go back to the pool. I wasn’t going to initially because it was rainy and a perfect book day but then I remembered how upset I got yesterday about my weight gain and decided I’d try and go for a swim. I was beyond nervous and had these terrified thoughts that I’d end up trapped in the pool because I wouldn’t be able to pull myself out at the end (as you can tell I’m writing this and don’t seem traumatised, I was able to get out). As you can imagine my swimming costume was a little bit more snug than I’d hope but it’s to be expected.

I got in the water and …

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Ok, so maybe it was that glamourous but the point is I finally got to swim again! I could only manage 25 minutes instead of my normal hour but I did it and even though I left fairly sore and absolutely exhausted (oh and accidently grabbed someone in the pool…) I just had this huge smile on my face as I left. I felt like my body was working with me for once instead of against me. I may have come home and had to lie down and fall asleep for a few hours but it’s a start. My back isn’t feeling it’s greatest right now but I’m pleased that I got those 25 minutes and even a go in the wave pool (very therapeutic).

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Absolutely exhausted after, but smiling! 

I’m really hoping this is the start of a good week and trying to combat my lows. With a day to myself tomorrow, work Tuesday, another unplanned day Wednesday, band practice Thursday and my sister coming to stay from Friday I’m going to be pretty busy. BUT! Don’t fear about the blog I have a lot of ideas and plans to keep you all entertained. I also want to thank all the great bloggers I’ve been talking to lately, you’re all amazing!

Until tomorrow guys!