‘Dear Body’ is a blog about how slowly through perseverance and resilience I continue to find my way in the face of a controversial health condition. This blog is a way for me to have an outlet and to try and connect with others, to also shed a little light on what it is like to live with (in my experience) a very misunderstood central nervous system disorder. (Although, recent research suggests that fibromyalgia may be an autoimmune disorder) and Functional Neurological Disorder (FND).
Where do I begin..
I am kind of an all or nothing person, which basically means I am either going at 100mph, or I am in my bed because I am on the verge of death, a bit dramatic, but you know what I mean.
I am used to being in charge of my body, I’ve not been great at listening to it very often, so imagine my surprise when it left me stranded at the side of the road and yelled at me to find my own way back! (that’s just rude!) There have been so many times when I have pushed myself to do just one last thing and that means, I’m going to continue to do another ten! Ha-ha! tricked you body!
My body has continued into adult hood to try and get me to stop! You would think blood clots in my lungs twice and a bleed would stop me in my tracks, and it did for a while, but then I am like “come on, you’re over this right!? Let’s get back on track!” My body complains a bit, well a lot! But my perseverance and resilience has pushed me through my adult years ignoring the red flags and using my next idea, or adventure to fuel my never ending need to achieve and learn. However, in doing that I forgot to just be, to be still and maybe let things happen organically instead of chasing after every dream. I guess that’s another reason why when I thought of writing a blog, my brain went into overload as so many ideas flew at me. I got completely overwhelmed as I didn’t know how to choose just one! Which is why my life has been such an adventure, I am always cooking up some hair brained scheme and then running with it. I usually bring someone with me, My husband, my best friend and countless others have come along for the ride. My husband once described himself as a back seat rider on a rollercoaster he couldn’t get off of, I took that as a good sign at least its not boring! I have kept him on his toes. I think he chooses to stay on the rollercoaster with me even though throughout he’s a little bit scared of what’s coming next.
What I have realised is that for many years with my brain fueling my body to go get and being so preoccupied with the next project, I have ignored low level and significant pain. I know that many of you that have been diagnosed with Fibromyalgia will identify with this and some others will have noticed every pang, throb, or stab. For me, I have like I said, ignored, ignored, IGNORED! Until my will alone has not been enough to powerhouse on through. My mobility is my biggest challenge, I currently need mobility aids such as a wheelchair and a stick to help me mobilise. I have found this really hard! This alone has kept me from wanting to go out and see friends. To need someone to help me is irritating. I can do it myself thanks, except that I can’t. The more I try to be active, the more pain I am in. It has stopped me from contacting friends, because who wants to be THAT friend! You know the one who has nothing else to talk about but her woes and stroes.
I worked in healthcare for many years, both in general nursing and mental health nursing. I would sometimes hear the opinions of colleagues about patients and staff. No one wants to be judged for a health condition they cannot control. Some are understanding and others are just plain mean. I listened to them thinking, god I hope I never need to have time off due to a debilitating illness. My recent hospital admissions were stressful, not just because I was ill, but because of an archaic view that some of us still believe that Doctors are all knowing, and you should just sit there while they talk over you and dismiss vital information about YOUR health. However, I have to say that is not all doctors. The truth is, no-one knows your body as well as you and if you think something is not right, then use your voice. I have not always been very good at this, but in 2009/2010 I was let down by a number of GP’s who did not identify that I had symptoms of a Pulmonary Embolism (PE). I knew something was wrong with me, I was overwhelmed by anxiety, my body was telling me in every way possible that I was unwell. I saw a number of different GP’s and every time I was reassured that everything was okay. One of the last GP’s actually laughed at me when I described some of the symptoms being in my chest. He mocked me and said “what, do you think your having a heart attack?” I left the surgery crying. I thought I was going crazy. The last doctor I saw was a lady and this time I cried “there is something wrong with me” I think she took pity on me and ordered a chest x-ray. As my mum drove me to the hospital I felt so ill and by the time we got there I felt like I was going to pass out. My mum said “your going straight to A+E!” tests revealed that I had blood clots in my lungs. I dread to think what would have happened if I had not gone to A+E that day. The moral of my story is; please trust your instincts and be your own advocate.
Since my diagnosis, I was recommended a Facebook group to join. I reluctantly joined, but what I found was a group of individuals that are really struggling and some of them like me have problems with mobility. I found it scary, but also it has spurred me on to live my best life regardless of how fibromyalgia is affecting me. Also, I feel that its important to mention that the reason I reluctantly joined the group was because I was having difficulty accepting the diagnosis. The more I read about this illness, the more I realise how poorly people living with it are supported. So many people have no idea how to manage their pain. Some responses that members had from from GP’s and other healthcare professionals about fibromyalgia alone were unbelievable!
I then saw my discharge letter in a whole new light. In one part of the discharge letter to my GP it said in capital letters DO NOT REFER TO RHEUMATOLOGIST. So, it is in my experience that so far from my research that Fibromyalgia is NOT taken seriously by some medical professionals, so where are we supposed to go for the support we need. Of course its great to support each other, but when you are staring at a page linked to someone as young as 19, who is using a mobility scooter to get around, I am shocked! Surely there is more that can be done to support people with this illness!
I am very proactive, and I have a loving support system, but many do not. I have found some interesting YouTube videos. However, I find that the majority of them are led by American health professionals, who have specialised in and researched Fibromyalgia. To my knowledge this doesn’t seem to be the case in the UK and many are left to just get on with it, being given no alternative other than to be on high levels of pain medication, some are told that pain medication is pointless. Others are referred to a pain clinic and some are not offered this, or any other form of treatment, but are told to try relaxation techniques and living a more stress free life. Everyone would prefer to live a stress free life, but how realistic is this?
I practise mindfulness and short yoga videos aimed to help people with this condition, but its not as easy as practising and magically your symptoms go away. Some enlist on their own crusade of trying to treat themselves with alternative medicines and visit different therapists. I have watched videos on this also and I know that it helps many people. I do know that there are GP’s and other health professionals that are very supportive of their patients with Fibromyalgia. I saw a really lovely physiotherapist who had knowledge of Fibro and was really helpful. Try whatever you think will help and don’t be afraid to ask to see a different doctor if yours makes you feel small and unheard, there are some out there who are amazing!
While I sit here in my garden writing this, I am reminded of how much joy it has given me over the last few months. I have spent much of my time at home trying to get my head around why my body is not functioning as it should and why I cannot wiz round at my usual 0-100 mph with pretty much nothing in-between. I have spent time lying, sitting, reading, making, baking, and doing a gentle 10min yoga video – little things to make me feel that in some small way I am still contributing and achieving something. Along the way, I have found some inspiring people from all walks of life, I will share whatever I come across as it may also resonate with you. I recently listened to a podcast about an extraordinary young lady called Grace Spence Green, who was left paralysed when a man leapt from the third floor of Westfield shopping centre in Stratford and landed on her causing unimaginable damage to her spine. As I listened to her, I remember thinking how incredible she was, so inspiring! The episode is by Jane Garvey on radio 4 the segment is called ‘life changing’ If you have time, have a listen. I will add an audio of this interview in ‘useful online resources’
Someone else I have found inspiring is the actress Selma Blair, who was diagnosed with MS a few years ago. I watched an interview with her when she had dysphonia, she was incredible! She looked elegant and calm as she slowly spoke of her journey to being diagnosed with MS and how it has affected her life. She wasn’t embarrassed to speak of her personal journey, or to link arms with the interviewer to walk around outside her home. She was herself, she smiled and joked while looking utterly gorgeous. She used a beautiful walking stick to support her while walking and I thought she was fabulous! The interview is in ‘useful online resources’ if you want to check it out. Selma has also done a documentary about her illness and as far as I am aware it comes out in October 2021 on Discovery +
To you, with love
I plan to try to write as often as I can and provide information that I feel may be helpful. I will post videos and will try to discuss topics of interest.. Equally, if you have seen, read, or found anything that you think is helpful, please write a comment. I hope to find a community of people that together will support each other in a kind and positive way. I do not profess to know everything, I absolutely do not, like you I am on my own journey trying to find my way.
So much love C x