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/dislocate and flares up my M.E. symptoms from all the exercise my body's done as well as exacerbating my chronic pain and post-exertion malaise. There is also a lot of cross-over with symptoms such as chronic pain and fatigue and cognitive dysfunction and I have my I have a disability that has symptoms and the symptoms change, so a bad day I'm in laid in bed able to to do very little, then I can have a good day where I can do things.


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. 

Its an episodic illness so symptoms come and go like my seizures but then there are constant symptoms like cognitive dysfunction, chronic pain and fatigue etc.

For me I am affected in a number of ways -  I have non-epileptic seizures - a mixture of myoclonic seizures, absence seizures and tonic-clonic seizures. I am totally unconscious during my tonic-clonic seizures; sometimes they last a few minutes other times I can have clusters of what is called 'status seizures' which can go on for over and hour. Absence seizures are just little day-dreamy moments where I'm unaware of what is going on around me and they go on for a minute or two. Myoclonic seizures are involuntary jerks; I mostly get them in my right upper body and arm; sometimes in my left leg and also sometimes in my whole body. They are incredibly annoying, most of the time I'm conscious except for when I'm having them during a status seizure episode. Because of the jerking it can cause my shoulder to sublux/dislocate.

There are symptoms that are there all the time, like my cognitive dysfunction, pain, fatigue etc and then there are symptoms which come-an-go like my seizures and headaches/migraines. 

My mobility is poor due to sensory disturbances (basically my brain forgets to tell my legs how to walk properly). it can also include a mixture of symptoms including muscle weakness and numbness in my lower limbs, temporary functional paralysis and pins and needles. I can be be quite wobbly on my legs and I have regular falls. I use crutches or my wheelchair which makes it easier to get around but it also minimises my chronic pain and fatigue and prevents falls. My mobility needs are fluctuating, sometimes my balance is near enough "normal" and other times I have lost complete feeling in my legs.


Chronic pain is another symptom which is caused by the pain signals remaining switched on in the nervous system for days, weeks, months or even years.


Cognitive dysfunction is also another major symptom. This can include brain fog which is like living with a brain full of cotton wool. It can cause confusion, forgetfulness, tiredness, difficulty thinking, lack of concentration, difficulty focussing and completing tasks.


My speech is also affected. I often forget words or confuse words so an example of this is this morning I said cup instead of fork. I can also stutter and stammer words; often this happens post seizure but sometimes it just comes on randomly.


Another rather embarrassing and difficult symptom, especially for a young adult is bladder issues. I have incontinence and a leaky bladder. Also, because of the nervous system not working properly the brain doesn't get the signals to tell me that I need to go to the toilet so I can go into urine retention causing infections or on the flip side 'when I need a wee, I NEED a wee!'


Other symptoms I experience include chronic fatigue; digestive problems; vision problems (especially double vision); hypersensitivity; sleep problems; headaches and migraines. I also find it hard to co-ordinate my body like my legs don't know what I want them to do because the signals aren't getting there properly. I also get a sensory disturbance symptoms whereby limbs feel smaller or bigger than they actually are which is quite weird and strange but scary too.

"FND can be as debilitating as other neurological disorder such as Multiple Sclerosis and Parkinson's Disease" (FND Hope)
It's a very unpredictable illness, I can be okay one hour and hen the next I can be unconscious having a seizure, or be on the floor following a fall and unable to get myself up or unable to speak or be curled up in a ball which spiking levels of pain.

Treatment includes physiotherapy, medication, occupational therapy and psychology. I'm also waiting/hoping to get specialist funding 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


Helpful Links:



M.E. - MYALGIC ENCEPHALOPATHY


M.E. stands for Myalgic Encephalopathy 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. In the UK 250,000 people are affected by M.E. Around 1 in 4 people with M.E. are severely affected and are either house or bed bound. It it very uncommon for a person to fully recover from M.E.

M.E. causes many problems for me including chronic muscle, nerve 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 which can be very painful at time and my sensory processing is affected too.


Muscle pain is a big symptom which is where 'Myalgic' comes in. As well as muscle pain there is also muscle fatigue whre your muscles feel heavy and tired; as though they are made of lead. Muscles can also be twitchy and cramping.

As well as chronic muscle pain, I also have muscular-skeletal pain, rheumatic pain and neuropathic pain. (Joints, bones and nerves).

Sensory pain is another big thing for me. Sometimes i have to lay in complete quiet and darkness. Even someone sitting on my bed next to me hurts, or the sound of my own voice.

I'm literally trapped in a body that hurts all the time and I've forgotten what it's like to live pain free.

Cognitive issues is also another big part of having M.E. - it's almost like everything is in slow motion like you know a ball is coming towards you bu you don't realise it until it hits you. I have speech difficulties likes stuttering, slurring, loosing and misplacing words 'anomia' and 'dysnomia'. I also have difficulty with my short-term memory; sometimes I can be as forgetful as not remembering something from 5 minutes ago or not remembering the day of the week. Working memory is also affected (the ability to carry out tasks) so this affects my attention span so I often have to break up tasks and flit between different things to get jobs done. My concentration is pretty shocking as well as my organisation of thoughts - I literally have to write everything down. Like with my FND cognitive dysfunction with M.E. is referred to as 'Brain Fog' and it's made worse by things like tiredness, physical activity and stress.

"Cognitive dysfunction alone is severe enough to cause a substantial reduction in previous levels of occupation, educational  personal and social activities." (M.E. Association)

Sleep is another big issue for me. I often wake up more tired than when i went to be an I often have unrefreshed sleep. Most days I need at least one nap to get through the day. Despite this, when it comes to bedtime I struggle with insomnia and sleep reversal despite being physical, mentally and cognitively drained.

With the general ongoing flu-like feeling, sore throats and tender glands, are a regular occurrence as well as infections and feeling feverish and struggling with temperature control.

Other affects of M.E. include digestive issues which relate to my other illnesses. Some of the symptoms go with my IBS and include nausea/vomiting, loss of appetite, indigestion, gloating, abdominal pain/cramps, constipations and/or diarrhoea.

My symptoms are pretty much constant and they also  fluctuate and can be episodic so I can have good-ish and bad days/weeks/months. 

There is also something called Post-Exertion Malaise (or PEM for short) which is and exhaerbation of symptoms following an activity, sometimes this could be from simply getting dressed to going out the hose for coffee with a friend or to a hospital appointment. PEM is often referred to as 'payback' as you're paying back in symptoms for the activity you've done.

My M.E. leaves me largely housebound apart from the odd trips out for social occasions and I try to get out the house with my carer when I'm up for it which gives me a bit of independence to say go to the supermarket and pick up my own toiletries. But to go to these events I have to save up my energy the days beforehand, and afterwards I can be left in bed the next day or next few days with PEM and a flare-up of symptoms. It's a fine balancing act and it can be hard to delegate what to do and where to spend my energy and thinking "is it worth it?".
Some appointments I have to go to the hospital but I try to get some appointments as telephone calls or home visits. For my hospital appointments I reliant upon patient transport and my London appointments I have to travel on a stretcher. Those appointments totality take out of me and I can't not go.

i have to be really careful not to over-do myself and do too much and cause myself to crash, but then I can also crash for no reason.

Some of the things that can help include medication, pain management and pacing. I'm also trying yoga from a lady with M.E. whose produced a book called 'Yoga for M.E.'. I'm also trying Integrative Medicine.

Helpful Links:


HYPERMOBILITY SPECTRUM DISORDER (HSD)/Hypermobile Ehlers-Danlos Syndrome (H-EDS)

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 from minor bumps but also seeming no reason at all) 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 affect too. For example with my digestive system I have a slow gut and delayed gastric emptying and intestinal dysmotility. This causes near constant nausea and sometimes vomiting, even after eating small amounts of food or drink or medication and abdominal pain too.

I also have bladder issues which cross over with my FND. Because my bladder is stretcher than normal it gets very full and becomes leaky leading to incontinence.

Another random thing is that local anaesthetic has no effect on me which makes things like trips to the dentist quite tricky.

Regardless as to whether you have HSD or hEDS the treatment is the same and the symptoms can be just as severe.

Medication and physiotherapy help to manage symptoms alongside things like pain management and orthotic braces to help keep joints in place.

I'm oping to be referred to a rehab programme at Stanmore which is aimed at patients with hypermobiliy and chronic pain and in February 2019 I'm starting the COPE Pain Managment Programme as part of UCLH's hypermobility service.

As well as rheumatology I see multiple specialists in different fields to manage the different effect on my body, these include: pain management, urology and gastroenterology, physiotherapy and occupational therapy.

Helpful Links:


DYSAUTONOMIA

This is a secondary issue to my other illnesses. Dysautnomia is a dysfunction in the body's automatic functioning; it affects things like heart rate, pulse, poor temperature control, orthostatic intolerance (dizziness and light headedness, feeling faint/fainting/blacking out when you go from laying/sitting to standing) and spacial disorientation.


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 and numbness.

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

I hate having migraines but if I take my migraines prevention medication and some anti-sickness it lessens or prevents my migraines. It took me a while to convince my GP that it was more than just stress and eventually he prescribed prevention medication and things have be better since.

Helpful links:

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 know cure for IBS but there are things that can help manage symptoms and give patients a better quality of life. I'm on some different medication which help and I'm also on a Low FODMAP diet which has made a massive difference.

I have good days and bad days. On my good days I have only very mild symptoms and on my bad days I'm curled up in bed with my heat pad in severe pain with lots of different symptoms.

I'm also currently being tested for coeliac disease.

Helpful links:


MENTAL HEALTH
Since I was a teenager I have struggled with my mental health. 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 experiences of mental illness from everyday people it will help raise better awareness and understanding of what its like to live with a mental illness.

As a teenager I spent several years in different hospital being treated for Anorexia and severe Clinical Depression. I couldn't keep myself safe, I self harmed in may forms and attempted to take 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 wherever I was in the country and it was my psychotherapy sessions with her that I firmly believed saved my life. She gave me my voice back through art and most importantly she gave me hope. 

It is my aim to one day train as a Child Psychotherapist so I can give a fraction of what she gave me to another young person in desparate 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 lost and too young  and experience I believe that no young person should experience. It's my hope that one day that a 16-25/30 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.

Helpful Links:

No comments:

Post a Comment