This is something I have been struggling to come to terms with and with my health anxiety at a high I tried as hard as I could not to research my disorder but I decided it was in my best interest to know what I’m battling. So basically, a few months ago I found out I have functional neurological disorder. It’s been quite upsetting to accept but I guess it’s a part of me now and something I just have to take in whether I want to or not.
How I found out I have functional neurological disorder:
To cut a long story short, I had INTENSE shoulder pain radiating from my arm to my chest. I put of going to the doctors due to trying to over come my health anxiety and i was sent to the doctors by counsellor who could see i was getting breathless from the pain. When i got there my arm had started to become numb and i thought it was just a seriously intense pulled muscle. They where worried and sent me immediately to the hospital. When i arrived i had numerous neurological work ups, bloods and x-rays and a ct scan. They believed i had a stroke but after the ct scan couldn’t pick up anything i was sent home with very strong painkillers and told to come back if it got no better. A few days later i lost function completely in the arm. I ignored it but then i got so much pain in my chest i had a asthma attack from struggling to breath. I called 111 where they where going to send a ambulance out again worrying i’d had a stroke. Instead we drove to a and e after waiting and cancelled the ambulance. After being in a and e again they did more extensive checks this time and after being poked and prodded by around 8 different people we came to a conclusion i needed more tests. The stroke team came down this time and could see i had lost function and worked out my reflexes are less down one side of body and on that side i couldn’t feel as much and was a lot weaker than my other side. I was sent for a MRI scan and sent to the stroke ward. They discovered after more testing that i have functional neurological disorder. I was discharged with not much information other then a website and a letter confirming to my doctor i have functional neurological disorder.
What is functional neurological disorder?
Basically suffers with functional neurological disorder have problems with their nervous systems functioning. It effects the signals by brain wants to send to my body parts. The body wants to communicate something and cannot. The messages get confused and this causes the body to be confused. The pain is real. The symptoms are real. The symptoms are very similar to those who are experiencing/have experienced a stroke and very similar to those suffering other neurological problems such as MS.
The symptoms of functional neurological disorder:
Non epileptic seizures.
Inability to use a part of the body.
Numbness/ tingling feelings.
Irritable bowel and increased urination.
Causes of functional neurological disorder:
Mental health issues.
Chronic pain (yay endometriosis).
Is there a cure?
In short no. Study’s have shown that Physiotherapy and counselling can help individuals but it is not completely effective. Pain relief can help but again does not cure and you could become addicted from taking pain killers to frequently.
Will I get worse?
At the moment I have no idea what will happen. Some days are better then others with the pain. I’m normally okay and then after some sort of stress or over working myself I’m in pain again. For now I try not to think of the future and think of today. I’m grateful for my family and friends and my health I have today. I won’t worry about the future until I’m firmly in it.
Since having my son i have really been triggered by health anxiety. Before having him i didn’t have any health anxiety at all. Until i had a traumatic birth i didn’t have any concerns over my health or anyone around me really. They say traumatic events can cause certain fears and it certainly has caused this.
What is health anxiety? Basically its a catastrophic thinking but relating to health. It’s like if you have a temperature you worry your gonna get sepsis and then you’re going to die. When quite frankly you just have a temperature from the cold you’re suffering or something like that. You really worry and get anxious whenever your ill and think of all the possibilities that can happen. Google becomes your best friend and you think the worst out of every situation
When my son was born and he was ill it caused me to be petrified whenever he was ill. I worried every time he got a cold, a rash, threw up or even had a funny bowel movement. As he got older and got ill more i would panic and think the worst. I knew i was being anxious and desperately wanted to not worry so much but i couldn’t stop it. On the odd occasion that Elijah was seriously ill which resulted in admissions to hospital would always get panicky thinking the absolute worse and wrap him in cotton wool for days after. It would cause my ocd to be excessive i’d constantly be anxious and on edge and terribly sensitive to anything and everyone.
Since starting my counselling i have been able to learn a lot about myself and that the traumatic birth caused this. When i was having my c-section i was terrified i was going to die. Since i came round i have been a little petrified i will die. This has caused me to be anxious over and over when ill and it doesn’t help having a chronic illness. Also because Elijah was so ill when born and they have never found a real reason why he was ill it really caused me to be anxious about his health because i was so worried he would die or end up in hospital again. Over time i have been able to rationalise in my head when illnesses aren’t significant and just minor. Talking about why i have felt so anxious about my health has caused a lot of unresolved feelings to come out and for me to be about to explore why i have felt the way i have. I still worry when Elijah hurts himself or is quite unwell but i don’t worry as much anymore. I have been able to rationalise and think things through clearer as well as my anxiety has come down a bit with the help of counselling. I’ve been practising mindfulness and avoiding negative things in my life and that has been able to help me keep a clear and level head.
Overall i am so proud of how far i have come and if you’re feeling the same level of anxiety as i was please speak to someone it can be just the push you need to feel a bit more normal again.
It’s a bit weird thinking about all these things that just randomly come up. Things that have happened to me and I have buried to protect myself. I’m getting to know myself finally. I think I try so hard to protect myself that I don’t even know who I am. It’s been therapeutic being able to be somewhere I feel safe to talk to someone about my feelings and my past. Someone who doesn’t know me and cannot pass judgement. It’s odd how trauma attaches itself to your memory and gets tangled up in all past experiences and you don’t even know it.
I’ve gone from going every few weeks to weekly which I think has been quite a shift. A good shift non the less as I’m more trusting and I feel I have a better relationship with my counsellor. She has picked up one of the biggest issues I have is trust. Trusting people to let my guard down and trusting people not to abandon me or hurt me. So I think creating a better relationship by seeing each other more is helping me to open up more. Last week I was actually enthusiastic about going to counselling. When I first came in I barely spoke and felt uncomfortable but the more I’ve gone the more comes out and the better I feel after.
I feel a weight is lifted of my shoulders immediately and I am able to think a bit clearer every time. I’m able to understand why I feel a certain way about certain thinks and how I process situations. Personally I think my childhood has a very big input into my behaviour and thought process. I have spent so long thinking everyone hates me and that I’m the issue when i am not. I worry everyone I love will leave me and I think it’s made me scared and a bit bitter. I am slowly understanding how to deal with my emotions which has been great and I think I might even be able to come if my anti depressants soon. I’m starting to take more time for me and for my family and to voice my emotions instead of holding them in incase j upset someone. I’ve got a long way to go but I’m so proud I’ve stuck to it and kept too a weekly appointment even if childcare can be a struggle. I know I need this for me and will continue trying to make myself better however I can. I have another counselling session today and I’m feeling positive not scared and I never thought I would be here today feeling this good.
I was in primary school when I was hit by a car walking to school. I remember being flung into the air like a food wrapper in a gust of wind. I remember the thud as I came down and the shock. I remember people scrambling round me and crying for my mum. My bag had been ripped to shreds and my Lisa Simpson pencil case and lunchbox had possibly saved my life by the dents to the front of their tin cases.
I was okay of course I’m still standing today but I did break a finger, severely sprain my legs and possibly this is the cause for my back pain all my teenage an dying adult life being knocked to the side by a car can mess you up in ways you don’t see. The trauma it caused me remembering one what it was like to be me and two the poor young woman who hit me screaming in tears praying I was ok and clearly shaken up. Thirdly my thoughts where with her poor bunny that was going to the vets it had knocked into the windscreen as she’d stopped. When the ambulance came I remember being so scared I’d be in a accident on the way and didn’t trust cars for a long time. When I’m a passenger I’m over cautious and worry at any closeness to another car especially now I’m a mother with a car seat to worry about.
So why don’t I drive? Exactly this reason. I’ve taken around 8 driving lessons where I absolutely hated them. I had a panic attack every time I sat behind the wheel and every time a car came near or someone crossed the road or walked in the street. I worry I will hit them and it’ll be my fault. I worry I’m going to get hurt by another car and it all gets too much. I have a lot of people in my family telling me just to drive but unless you’ve been hit by a car as a child I don’t think you can really understand the trauma. It’s not as easy as just drive as I physically cannot trust myself behind a wheel if I was to have a panic attack so I jacked it in. It doesn’t effect me too much. I enjoy walking with Elijah to places and going on the bus sometimes. I only go to town which is fifteen mins from my house on a good day so it’s quicker than driving and parking and cheeper then paying fuel. If I go out with friends I normally bus to them or meet them or take turns coming to mine. My husband drives so at weekends or if errands or day trips are further a field we just drive then and we have two car seats one for me to take out with friends and one for our car. It’s all about making the best out of a bad situation and I’m yet to have a big problem yet.
Possible trigger…I missed my own child’s birth, yes he came from inside of me but I missed it. I’m not being dramatic or anything like that but I was put to sleep so I missed my own child’s birth. Something I will never get over. A bit of back story…
When I was pregnant I didn’t feel my baby move much. He would have quiet days and I’d be constantly up hospital. It wasn’t until I was 35 weeks pregnant when they decided to give me a scan and locate that the baby was breech. I had a appointment to have something called a turn of the baby inside of me which didn’t work and was the worse pain of my life. So I had no choice but to have a c-section because of how the gremlin was laying. 3 weeks later would be the day he would be born and I would become a mother when I was booked in for surgery. On the day I remember being exhausted from excitement but also I had spent weeks feeling something would go wrong. I was right.
Being prepped for surgery was eventful the staff put a massive ass cannula in me after several attempts and wheeled me in to theatre. I remember thinking the theatre looked a bit boring and like a normal room. The theatres I had worked in had no windows and no outdated machinery. None the less I sat on the bed. I was told not to move while a massive needle was inserted into my back. They do not tell you how much this will hurt. I don’t think the trainee got the placement right to this day. I layed on the bed and meds given to send my body to sleep below the stomach. Although I couldn’t move my legs I could still feel my stomach. They rubbed ice on my tummy and they used needles to feel for pain. I alerted them several times I could still feel the cold of the ice and the prick of the needles. Surgeons being surgeons kind of ignored me. My husband was a bit worried for me when I looked scared as anything holding his hand with wires attached to me everywhere getting in the way.
Then they cut me. I can still remember now the screaming as I felt it. They knew immediately something was not right and that the medication had not worked. I was to miss my own childs birth because it was too late to try putting the needles back in my back as I was open on the table. My husband was pulled from the room and I remember the mask being lifted on to my face and loosing consciousness . I missed my child being born and others met and held my child before me.
I remember coming round. I remember coming round by choking for air as I had a saw throat from the breathing equipment inserted into my airways which had been taken out and then shivering with pain as my stomach was in unbearable pain from surgery and coughing was pulling at it. I was given water and woke up alone. Without my baby. I remembered that I had been pregnant but I thought it was a dream. I thought I had been in a terrible car accident and that I was not really pregnant. The drugs where so strong I didn’t realise my son had been brought in the room to meet me and told my husband it wasn’t the time to bring in blankets. Then it came back to me when I was brought down to my room and I started to come round more. I met my son but at first I didn’t have that immediate rush of love. How was I supposed to know he was really mine? I remember thinking he was too beautiful to be mine. I remember feeling robbed and I think it caused me to struggle to accept I was a mother because I had missed the birth. After drugs had worn it and time had passed my love started to grow and I could see bits of me and his dad in him as I stared down into his eyes.
I’m always jealous now of mothers who witnessed their birth. I’m always sad when people say they had traumatic births and still got to see their baby born and that love that comes with it. I’m not downplaying others emotions or their experiences because I like to think if I was in that situation I would struggle to but I always find it so hard to see others not feeling lucky they witnessed their own children’s births. To see other people’s reactions when the baby comes out. To hear the first cry. To share the first touch, to see them first. Instead wait a hour to meet him and my mum and husband had seen him and changed him, had held him and loved him first. Maybe one day I’ll get over it but for now it’s still fresh and I still long for seeing that moment when he was born. When people say to have a section is the easy way out I want to scream in their face because it’s not. The feeling of not seeing your baby born and struggling to bond as they are born in a unnatural way to not be able to move to hold them straight away and to be in pain for weeks/ months even years after isn’t and never will be the easy way.