Friday, 20 November 2015

London calling

For the purpose of this blog we shall call my GP 'Wonder GP' because she is really is turning out to be. 

She is the 6th GP I have seen, at the same practice, since my M.E. journey began. I chose her at random from a list of Doctor's names online when I was making an appointment over a year ago. I chose her because I refused to go back to any of the others. The fact that she hasn't yet made me cry is still quite baffling! Since having M.E. I have been reduced to tears by every other GP and have left nearly every appointment feeling incredibly despondent and alone. Not anymore. I still expect to be told that this is my fault or that I'm not trying hard enough or that I just have to get on with it. 

Yet Wonder GP has never treated me like that. And that feels quite alien. You see the stigma and misunderstanding of this condition goes before us. 

Wonder GP is actually surprised by how blasé I am about so many of my symptoms. Five years in, and after being left to my own devices by the medical world, I have learnt to accept the worst symptoms as being completely normal. It has not been easy and I still get scared sometimes but on the whole it has meant that I have regained control of my life and rather than being dictated by my health, I have almost embraced it and we work alongside each other as best as we. It would not be healthy to be focuses on how poorly I feel all of the time, and so I don't. This is my new normal. 

Anyway, I digress. So what's new?! Haha.

When I went to see my GP about my heart, she asked me to run her through my medical history and symptoms. I have purposely avoided talking about my M.E. as a whole with her. Instead I've brought up symptoms separately as and when because my past experiences have taught me that GP's do not always have a high opinion of this condition and I cannot tell you how detrimental that has been to me. 

So, for the first time, I listed off all of my symptoms. And for the first time someone has actually taken it upon themselves to solve a problem, rather than fobbing me off and sending me on my way. 

I am being referred to The National Hospital for Neurology and Neurosurgery in London to see if they can shed some light on why I get 'stuck' or paralysed. It has been a symptom I've experienced throughout The M.E. Years and one that I've always put down to M.E. because no doctor ever batted an eyelid when I mentioned it. It tends to happen when I get too hot, or after I eat, or when I am crashing after 'exertion', or dehydrated. I am unable to speak or move for a good five minutes and then I slowly get the movement back in my fingers and toes and regain the ability to speak. 

Wonder GP had never come across anything like it before but instead of ignoring it she spent time doing research into it on my behalf! Can you believe that?! I'm a little overwhelmed that she took the time and effort to try to come up with an answer and a solution. Incidentally this is the same GP who referred me to the haematology specialist when my blood wasn't clotting properly. See! How wonderful she is. 

I no longer have such intense anxiety before a doctors appointment. I no longer leave feeling deflated and defeated and worthless. It is quite telling really that I am overwhelmed by the fact that a GP is treating me a human being. That alone does more for me as an M.E. sufferer than any of my medications do. 

Wednesday, 18 November 2015

Bent but never broken

Photo taken from my Instagram indy_annaj 
On this day 5 years ago I was diagnosed with Chronic Fatigue Syndrome (I never get involved in the ME vs CFS debate so don't even try it) by a neurologist wearing a corduroy suit at the Fitzwilliam Hospital in Peterborough. Funny what you remember. It was 3 days before my 22nd birthday, a birthday I have little memory of because I was so unwell. I was sleeping on the dining room floor because I could not use the stairs. I cannot even begin to explain how poorly I was at time - poorlier than a friend who has stage 3 leukaemia. I could barely walk and had a list of symptoms covering over 2 sides of A4 paper. So many of those symptoms are sadly still present today.

I was told to have a quiet Christmas and see how I was in the new year. My mum and I were offered nothing else despite being so poorly that a brain tumour was mentioned at one point along the way. 

This Saturday I will turn 27. That 21 year old girl had no idea how strong and resilient she was and how she would need to be each and every day for the next 5 years.  She had no idea that she would lose so much of her life and yet gain so much more. Ultimately, she had no idea that it would last this long. I have been changed and bent beyond recognition by my ill health but I have not been broken. And I hope I never will be. 

I hate to think of where I would, or perhaps wouldn't, be without my incredible parents, my sister and brothers, my family, my boyfriend, the friends I've kept and made along the way, and the fellow sufferers who hold my hand when my body won't work the way it should. I have made more progress than many others in such a 'short' space of time. I may never be able to work or look after myself properly. There are many things I may never get to experience. Yet I feel like the luckiest girl in the world. 5 years ago today I could not have dreamed of the quality of life I have now.

Matters of the heart

I recently had some kind of 'episode' or 'seizure'. It was something I had not experienced before and it was terrifying. It started with an intense pain in my heart and then the feeling that my heart had stopped. Seconds later I had the feeling of heat rushing through my body and was almost certain my head was about to explode. When it had subsided I got the never-welcome temporary paralysis that has been a constant over the past five years. It is times like this that make it almost laughable that most people think of M.E. as 'just tiredness'. I avoid going to the doctors as much as possible but it was clear that I needed to get myself checked out. 

It has taken a long time for a GP to take me seriously about my concerns about my heart. Back in 2010, after my diagnosis, my concerns were met with laughter and the helpful "at least it's still beating." I am most certain that had I not had the M.E. label I would not have been treated so poorly. The GP that I have had for the past year or so has been a most welcome change from the five or six others I have seen since my M.E. journey began. Most notably she doesn't make me cry!

She wanted to do an ECG (electrocardiogram) and then a 24 hour ECG. The fact that she didn't just discount my concerns as being all in my head meant more than anyone will ever know. With the 24 hour ECG, I was asked to press a button on the small machine every time I felt pain or palpitations. I pressed it quite a lot. 


The results were practically clear. Nearly every time I had pressed the button to highlight heart pain or 'gaps' in my heart beat the results showed nothing at all. Yet another clear result making me feel like I am going insane. While there were slight abnormalities here and there they were nothing to be worried about and suggested that I could have an ectopic heartbeat. 

Rather than just send me on my way like every other medical professional has done, my GP still believed me when I said I had been experiencing pain in my heart. We talked about coming off either the citalopram, which has reduced my brain fog dramatically, or the amitriptyline, which has stopped the restless legs I get at night and helped me sleep better on the whole. I'm not keen on coming off either of those just now so we decided to start with the very low dose of propranolol that I started taking for both the palpitations and anxiety.

The pain in my heart has decreased and perhaps even stopped. The palpitations and 'gaps' in my heart beat have ceased. Alas, a resting heart rate of 117bpm isn't normal. I'm keeping an eye of it while trying not to focus on it. I know many of you will ask if it have PoTS (Postural tachycardia syndrome) but I don't believe I do and it has never been suggested by my GP.