Chronic illness · Fibromyalgia · Health

Living with a flare

As I type this I am sat on my sofa in my PJ’s watching the Eurovision Song Contest and having a chuckle at Graham Norton’s quips at each artist. Its my annual guilty pleasure and even though I am in the midst of a fibro flare, I REFUSE to miss it!

The other significance of today is that it is International Fibromyalgia Awareness day. I am writing this particular blog to raise awareness of the disease and its effect on sufferers.

This time a week ago I was feeling a bit run down and as if I had a bit of a bug coming on. Little did I realise that I was about to have my first experience of a flare since getting my fibro diagnosed and, well….what I thought was….under control. After a few days of feeling like I did before starting medication in March, I realised I needed to see my GP who informed me that I was “in a flare”.  I’m very lucky to have an amazing GP who is extremely supportive. She doubled the dose of one of my meds and I will be seeing her again in 6 weeks or before if needs be.

I suppose I started writing this because I wanted to explain what a flare feels like. I seem to be quite unlucky as I seem to suffer from most of the “possible” symptoms of Fibromyalgia.

One of the symptoms I get is excruciating abdominal pain, I suffer with IBS every day anyway, but when my fibro is bad it seems to turn into Colitis. This means lots of time on the toilet in lots of pain and sometimes lots of blood. The most common fibro symptom is widespread body pain. My painful spots are my hips, lower back knees and shoulders……..but at the moment I have pain EVERYWHERE! I am struggling to hold things because my hands and fingers are so painful. It hurts to walk, to sit down…..it’s basically impossible to ignore the nagging pain all over your body. This can make it impossible to get a decent nights sleep…….and to top it off chronic fatigue is also a massive issue for me. You know that feeling of utter exhaustion that you have only felt a couple of times in your life? That’s how I feel most days.

I also suffer with some very strange sensations on my head and around my face….I get a tingling sensation at the back of my head that works its way forward over my scalp to my forehead, then I get a sharp pain that sits above my left eye and usually develops into a migraine. I also get tingling feelings that spread from my left ear across my face to above my lip and across my nose, leaving my face numb. This is usually when I get twitches under and over either eye and around my mouth. It’s a bit bizarre to see, but even weirder to feel!

Another of my symptoms is vertigo and when I am in a flare I get a sensation of shaking……like a tremor that goes with it. Sometimes it is visible, other times it isn’t. Sometimes I can feel it only in my arms, other times it feels like its going through my whole body and I honestly feel like a nodding dog!!

One of the most distressing symptoms that I have experienced is chest pain. It isn’t like a dull ache, it actually feels like someone is stabbing me right in the centre of my chest. When this comes on I have to work really hard not to panic and make it worse. I’m getting used to it now, so don’t tend to get as anxious about it as I used to.

My cognitive function is a massive issue when I’m poorly like this. I forget things. I bump into things, I drop things. I’ve fallen over. I find myself having what can only be described as vacant moments where I genuinely have no idea what I’m doing! I often struggle to find words and I’ve noticed that my vocabulary has reduced greatly. I forget peoples names while they are stood right in front of me. It’s all a bit frustrating!

I have joint hypermobility syndrome, and when I am in a flare you can literally hear my joints creaking, cracking and popping! It can be quite painful and can sometimes feel like my joints are about to bend in the wrong direction!

To be honest, I could go on and on. But, we’re on song number 25 at Eurovision (Cyprus) and its 10.05pm which is about the time that my brain goes into shut down. Please, please share this post if you can. Even if I can just make a handful of people more aware of Fibromyalgia I would be so happy!

Thanks for reading you lovely people.

Chronic illness · Diagnosis · Fibromyalgia · Health

Fibro-me-whatty?!

It’s been a long old time since my last blog post, and for that I apologise. I have been intending to write this blog for what seems an age, however, events kept over taking me to the point where I decided to delay writing it until things seemed a bit calmer and……..well, just generally better.

So, once again, I shall start this blog at the beginning of my journey.

The first time I can remember being really ill as a child, was having mumps. I remember walking with my Mum down the road of the village that we lived in and feeling so, so poorly. But, I don’t really remember having any real problems with my health until I was around 10 – 11. At this time I remember that I used to suffer with Tonsillitis on what seemed like a regular basis.

I started my periods when I was aged 11 and my Mum has recently reminded me that I started to get tonsillitis every time I had a period…..weird huh? Aged 12, I started to have these really strange episodes during the first few days of my periods. I have since been diagnosed with an extreme cervix vasovagal response. This starts with the sweats and the obvious severe period cramping, I start to feel very weak (and by that point I know whats coming, but I am totally unable to stop it!!!), I sometimes vomit, the episode usually progresses to a point where I experience loss of vision, I am unable to move and speak. My heart rate and blood pressure drop by this point and I very much feel on the edge of consciousness. An episode can last anything from 1 hour beginning to end, to 3 hours. Once the episode is over, I can come around quite quickly but, as I have got older, I now find that it takes days to recover. I’m sure it sounds very dramatic to anyone who has not experienced or seen anything like that, and it is, especially for a teenage girl as I was when I first started to experience it. During my lifetime I have managed to scare the life out of several friends, teachers, my brother, employers, my parents and various onlookers through this.

Aged 13 I had my tonsils removed. I think my Parents both hoped that this would be the answer to a lot of my problems. By this time, I was starting to have to take a lot of time off school and it was having quite an effect. I remember, for around 12 months feeling so much better and experiencing better health. However,  I then seemed to develop a tendency towards bronchitis and ear infections. My period problems also meant that I continued to have to take time off school. On several occasions, my poor Mum had to dash to collect me after I had collapsed or vomited at school. By age 14 it was apparent to me that people were doubting of the reality of my health problems. Kids are kids, and there is no surprise really that even my friends at the time doubted that I was ill when I had time off. But I distinctly remember being shown up by teachers several times who passed comments on my absence.

It’s around this time, that I distinctly remember anxiety starting. Anxiety about having to catch up with school work, anxiety that people didn’t believe me, anxiety that I knew it was only a matter of time before I was ill again.

The last couple of years at school I was lucky to have some great friends who really helped me get through. I remember feeling like a very awkward teenage girl. I was overweight, I struggled with embarrassment over my health. I got through my GCSE’s with fairly good results all things considered. My next step was ‘A’ levels……….and boy did I start to struggle. I was quite active at this time and used to do a lot of cycling, this is when I started to shed my “puppy fat”. I started taking the combined pill around this time too and it massively helped with my “women’s problems”. However, I found I was starting to suffer more and more with anxiety. I was always tired, but I put this down to nights out that I was having with friends.

As I headed into my twenties I piled on weight. I was finding that fatigue was having a massive effect on my life. If any virus was going around it always seemed to be that I would pick it up and take longer and longer to recover from it. Again, I remember suffering from the usual anxiety and even depression by this stage. I’d also gained so much weight that I was no longer able to take the combined pill that used to help with my periods, so I was back to struggling with those problems.

My working life was always a struggle due to ill health. I did my best to look after myself and to drag myself through illness as much as possible, but sometimes it just wasn’t possible. It would get to a stage where I would suffer that much more because I had tried to struggle on. I had begun to notice that fatigue was becoming a massive issue. I was suffering massively with anxiety and depression due to feeling so ill regularly, but also because I was constantly having to explain myself to people and I could see that often people didn’t believe me. I then began to doubt myself……maybe I’m not ill, maybe I’m just lazy. A dangerous cycle of self loathing began.

I say dangerous, because it meant that I didn’t take my health problems as seriously as I should have done. I started to believe that I just had to “DEAL WITH IT”, that ridiculous phrase that is so readily banded about in society these days.

And so I muddled on.

In the summer of 2009 I ended up with Swine Flu. Boy, was that a stinker.

During this year, I decided I needed to change my life as it was so obviously missing something. I suppose its not easy to find focus when you’re living something, but it hadn’t dawned on me that perhaps my life was missing good health.

In September 2009 I started my nurse training. Ill health and fatigue ensued for obvious reasons. After several comments from various health professionals I was working with, it started to dawn on me that something wasn’t right.

In December 2010 my Dad passed away. I tried to get on with life, but poor health and grief had other ideas. After a couple of years of muddling between nurse training and jobs, I ended up with ulcerated tonsil beds. I remember thinking that I wasn’t seeming to get any better and then just before Christmas of that year I ended up in hospital with a PR bleed and severe abdominal pain. I was suffering from terribly low self esteem as I was struggling to complete my nurse training due to illness and fatigue was seriously kicking my backside. It was a frightening experience, BUT, with specialist intervention and regular GP visits I was starting to realise that I needed to fight to get some answers.

In 2013 I was diagnosed with Post Infection Colitis, Leaking Gut Syndrome, Chronic Fatigue, Irritable Bowel Syndrome and I started to be investigated for Lupus. In 2014 I had James and for the 9 months of pregnancy and around 7 months afterwards, I was healthy……..it was fantastic.

However, in February 2015 I started to suffer from Benign Paroxysmal Positional Vertigo……yep, try getting your tongue around that after a few drinks!

In September 2015, I once again went back to my nurse training. In December of that year, I met Neil (Horrraaaaaay!). Having a supportive partner made a massive difference.

In June 2016 I decided to apply for a job as I was finding the shifts with nursing such a struggle…..again, I put this down to being lazy rather than my health. I got the job and started in the August, I genuinely loved that job. However, by December I had already had to take time off sick and I was so run down and exhausted. New Year came and went and I was struggling massively with abdominal pain. I spent 5 days in hospital in February 2017. I felt so ill, but we weren’t really making any progress as to what was wrong with me. I was diagnosed with Diverticular Disease and another bout of Post Infection Colitis.

In June 2017 I handed my notice in. I was gutted, but I knew I wasn’t well enough to go back to it. By this point I think my brain was a bit addled……I realised I wasn’t well, but doctors still weren’t really able to explain why I was so poorly. I just wanted a normal happy life and by this time I had been brainwashed into thinking that half of my symptoms were down to either my weight or stress and I was convinced that everyone just thought I was lazy. I again tried to muddle on. That was a mistake. At the end of last year and beginning of this year I was so, so poorly. I went to one GP’s appointment with Neil, the GP I saw wasn’t my regular one and she basically suggested that perhaps it was all in my head. I cried for days…………I was on so much medication by then. It had all got unsustainable for so many reasons. Over Christmas, New Year and the first few weeks of January I ended up with pneumonia. This was possibly my lowest point as the pneumonia kicked off my colitis and vertigo big time. I was in a terrible state.

Something had to give. I couldn’t take much more. One of the most common symptoms of fibro is widespread pain, I had struggled with this for years. I had nothing left in my tanks and I knew if I didn’t get answers soon, I’d struggle to carry on.

After an MRI, abd various blood tests, I got to see my usual GP again in February and BAM………an answer. My vitamin D levels were rock bottom and “I believe you have Fibromyalgia”. What probably should have filled me with fear and dread, came as such a relief. I had a diagnosis!!!!!! I had an explanation. It was all real. Every awful, shitty, painful symptom that I had experienced existed. It wasn’t down to a flaw in my personality, It wasn’t imaginary. IT WAS REAL!

Fibromyalgia. Do any of you know what it is? I didn’t. It’s a disorder of the Central Nervous System and it is impossible to put into words how disgustingly ill it can make you. So, all those other quirky things I have been diagnosed with, I do have. But they are symptoms of my Fibromyalgia. Most people with Fibro that I have spoken to have taken YEARS to get a diagnosis, just like me. It’s a relatively newly recognised illness and therefore the medical profession is very much playing catch up with regards to research.

Is it something I have had all my life? I honestly don’t know and I suppose we never will. But my GP has suggested that it is a distinct possibility due to all of the problems I’ve faced.

My GP came up with a treatment plan. We had several options involving various medications, but she did me proud and started me off on just one to start with and it has done wonders to improve my symptoms in the 6 weeks I have been taking it. Obviously, no one wants to be reliant on medication for the rest of my life. But, I have accepted that this is an illness that I will always have and that if medication helps then I WILL be taking it.

The new medication has helped so much that I have been able to cut down on several of my other medications. How good is that?

My GP has drummed into me that I need to take life at my pace and not to over do things. But now I know what I’m dealing with, it’s easier to do that.

So basically, although it has been a massive struggle to get to this point, life is getting better. I am totally at peace with myself and my poor body. We have plans for the future and, providing I look after myself, I really do believe that I will soon be winning at life with Fibromyalgia!