About my illnesses

Although I have several different illnesses they all interlink with one another. For example when I have a seizure it causes my joints to sublux/disclocate and flare up my M.E. symptoms as well as pain and post-exertion malaise.


FUNCTIONAL NEUROLOGICAL DISORDER/FUNCTIONAL MOVEMENT DISORDER (FND/FMD)

This is where the the nervous system doesn't work properly so my brain is unable to send and receive messages properly. For me I am affected in a number of ways -  I have non-epileptic seizures; my mobility is poor due to sensory disturbances which are are a mixture of symptoms including muscle weakness and numbness in my lower limbs, temporary functional paralysis and pins and needles; involuntary movements; chronic pain; chronic fatigue; digestive problems; poor cognitive function; vision problems; headaches and migraines and sensory disturbances.

FND can be as debilitating as other neurological disorder such as Multiple Sclerosis and Parkinson's Disease (FND Hope)


Treatment includes physiotherapy, medication, occupational therapy and psychology. I'm also waiting to go a specialist rehab programme in Leeds at the Centre for Psychological Medicine. I also have regular follow-ups with my Professor in London.


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HYPERMOBILITY SPECTRUM DISORDER 

This is caused because my collagen is faulty; collagen is the glue of the body which keeps joints and organs together. For most people being hypermobile isn't a problem and can be advantageous such as with athlete, gymnasts and dancers, but for a small percentage of people like myself it can be very problematic.

My joints are lax (loose) and come out of place more easily which has a knock-on effect and it is an exhausting condition and leaves me in constant pain. I also injure more easily (I have countless bruises for very minor bumps) and my veins aren't vey good too and it often takes multiple attempts to get needles and cannulas into me. As well as my joints being affected my organs are too, for example with my digestive system I have a slow gut and delayed gastric emptying and I have issue with my bladder too. My organs are stretchy too which can cause issues.


Medication and physiotherapy help to mange symptoms along with braces to help keep my joints in place.  
I'm also waiting to be referred to a rehab programme at Stanmore which is for patients with hypermobility and chronic pain.

I see multiple specialists for my HSD and related issues.

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M.E. - MYALGIC ENCEPHALOPATHY

M.E. is much much more than just simply "feeling tired", M.E. is a chronic neuro-immune disorder and is more like permanently having the flu alongside other symptoms. It's a spectrum disorder the severity affects everyone differently. 

M.E. causes many problems for me including muscle and joint pain; headaches and migraines; sensory disturbances such as numbness and pins and needles, I'm also very sensitive to noise, touch and sounds and my sensory processing is affected too; speech difficulties like loosing words or slurred speech; my cognitive dysfunction such as poor memory and concentration. It also affects my digestion and ironically even though it causes chronic fatigue as a main symptom it also causes insomnia too.


When I have a flare up or a 'crash' in can take days or even weeks to recover. 


Medication can help manage symptoms, alongside physiotherapy, pain management and pacing. The rehab programme in Leeds for my FND will also help me with my M.E. and I'm waiting to be referred to a specialist M.E. team.

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MIGRAINES AND CHRONIC DAILY HEADACHES (CDH)

I have headaches on a near daily basis, sometimes they remain juste headaches; other times they turn into migraines. 1 in 7 people suffer from migraines. CDH are thought to be part of my FND. CHD are headaches that occur 15 or more times a month. I've gotten so used to having headaches now; sometimes they just sit there in the background; other times I can barely function and this is usually when they become a migraine. 

Migraine symptoms include: difficulty concentrating, speech difficulties, extreme sensitivity to light/sound/smell/touch, nausea and vomiting, pins and needles.

I also suffer from a type of migraine called 'Hemiplegic Migraines'. Which this is can sometimes resemble a stroke because I get numbness down the right side of my body and slurred or loss of speech.

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SEVERE IRRITABLE BOWEL SYNDROME (IBS)

IBS affects the digestive system. For me it's quite severe and affects me on a daily basis. Stress and certain foods are big triggers for me. Some of my IBS symptoms include cramping, abdominal pain, gas, bloating and chronic constipation. There is no known cure but there are things that can help mange symptoms and give a better quality of life. I'm on medication which helps manage things and I'm currently on a low FODMAP diet which has really helped. I have good days and bad days with my IBS, sometimes I can function as normal, whilst on bad days I'm tucked up in bed in severe pain. 

I also have a slow gut which is mostly because of my faulty collagen and HSD.

MENTAL HEALTH ILLNESSES

Since I was a teenager I have struggle with mental illness. it takes a lot for me to open up about mental illness, but I firmly believe that by being open and taking about the real un-sugarcoated experience of mental health form everyday people will help raise better awareness and understanding of what its like to live with mental illness.

As a teenager I spent several year in different hospital being treated for Anorexia and severe Clinical Depression. I couldn't;t keep myself safe, I self harmed in may forms and attempted to then my life on a number of occasions. Many people, including professionals gave up on me, but one person stuck around which was my CAMHS therapist. She attended every meeting whoever I was in the country and it was my psychotherapy sessions that I firmly believed saved my life. She gave me my voice back through art and most importantly hope. 

It is my aim to train as a Child Psychotherapist so I can give a fraction of what she gave me to another young person in depart need just like me.

Unfortunately when I turned 18 I had to transition to adult services. My CAMHS Therapist tried her best but Adult Services couldn't give me what I needed in the community. I spent time on wards feeling too lost and young for an experience that I believe no young person should experience. It's my hope that one day that a 16-25 service will exist to give young adults with mental illness access to appropriate care and support.

I also have an something called Disorganised Attachment Disorder, basically people are hard subject for me. Relationships are disorganised and messy; I like routine and predictability to keep me safe as in the past when I was growing up relationships where disorganised and I learnt not to trust to not feel safe. I find it hard to read facial expressions and body language as it means nothing to me and not i have to work hard on those things,

Complex Post Traumatic Disorder (C-PTSD) is another of my mental illnesses. C-PTSD differers to PTSD as the trauma happens over a longer period of time and there are additional symptoms.

Depression still hangs over me too, along with all of my other difficulties with eating thoughts and behaviours, C-PTSD but I'm learning to live with it and be in charge of my life and use more positive ways of coping. 

Being chronically ill also affects my mental health. Being in constant pain and dealing with other unpredictable symptoms on a daily basis; the constant wait for tests and results and appointments etc lowers my mood too and I think that's the same for many people with chronic illnesses.

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