#clusterheadache

When you become chronically ill, you have no choice but to allow and take adjustments in your life. You become a different person, both to yourself and to others. Life in itself is suddenly a completely different game that you don't know how to play and noone is there to teach you. You have to adjust to a new way of living, a new way of feeling, both emotionally and physically, a new way of how people see and respond to you. You have to get used to feeling bitterness, sadness, anger, in a way you didn't feel before and you have to get used to fighting, for everything. Everything changes, from the way you sleep, to your mobility, to your ability to do a job that you love and are good at, just everything. I have had to accept that the anger towards my illness and disability, to how society views it, has made me mess up a lot of things that are really important to me.

It is hard to adjust to people being well meaning or sincere, whilst being ableist or ignorant at the same time. It is hard to adjust to the fact that if you point out peoples ableism or ignorance, it becomes somehow another flaw in your own personality. It is hard to adjust to the fact that you are often completely alone in your battles. You are somehow expected to stay happy, to control your emotions, to not finally snap at the things that hurt you emotionally, when you have forgotton what not being in pain feels like, when you haven't slept for more than an hour for days, when you are on medications that bring about more symptoms and when you are trying to balance your general wellbeing, your family life, your work, your medical appointments and the emotional upheaval of it all. .

IMAGE DESCRIPTION: A black and white photo showing a small section of building above an archway with a sign for the NHS hospital 'The National Hospital for Neurology and Neurosurgery'.

So people make assumptions, based on what you do or don't tell them, based on what they see, based on your diagnosis regardless of how much they actually know.

People see how you act, how you move, they listen to what you may say, work on the assumption that you would mention all of your symptoms any time you feel them.

When you mention a type of 'headache' condition, they feel they understand, start talking about what works for them, or saying 'I had one of those headaches once'. What they don't realise is people commit suicide every year because of that 'headache'.

So I am going to list my diagnoses, and then list most of the symptoms that I have had in the past few years.

Diagnoses: Episodic Cluster Headache, Chronic Migraine, Temporomandibular Joint Dysfunction, (possible) Trigeminal Neuralgia, Myalgic Encephalomyelitis, Fibromyalgia, Functional Neurological Disorder.

Symptoms:

Chills

Fever

Light Headed/Dizziness

Struggle recalling words

Fainting/Loss of Consciousness

Difficulty Swallowing

Parasthesia

Electric shock type pains in face

Palpitations

Struggle forming sentances

Confusion

Headache (tension)

Nausea/Vomiting

Fatigue

Neck pain

Weakness

Shortness of Breath

Chest pain

Migraines

Sensitivity to sound

Loss of use of a limb

Sore throat

Pleurisy

Shoulder Pain

Tachycardia

Eyelid Tremors

Cold hands and feet

Blurred/Double Vision

Subluxation of Jaw

Back pain: nerves.

Insomnia/Lack of Sleep

Swelling

Muscle Cramps

Hip Pain

Earache

Urticaria

Electric shock type shooting pain in back and legs

Painful glands

Memory Loss

Mottled skin

Fits/Seizures/Convulsions

Regular infections such as common cold, throat infections, chest infections, shingles

Leg Pain

Excessive Sleep

Jaw/dental pain

Blackouts of time and memory

Cluster Headache (very severe focused pain)

Temperature Sensitivity

Struggle Regulating Temperature

Abdominal Pain

Hair loss

Tremors

Back pain: muscular

I am sure there are still some I haven't mentioned.

The point in writing this, was to make people see just how much conditions can impact a persons health and wellbeing. Someone may hear fibromyalgia and just think of some pains, someone may hear M.E and just think 'tiredness', when in reality my conditions cause a multitude of symptoms.

Some days I will say if my symptoms are bothering me, I may tell someone that I am in a lot of pain that day, but I may not tell them that I fainted, or that I have been vomiting or just blacked out and am confused. I don't discuss all my symptoms, sometimes I don't discuss any at all, that does not mean they are not there. It doesnt mean I am having a good day or I am 'better'.

Never make assumptions about how someone is feeling or how things affect them. If you want to know, or want to understand, IF YOU KNOW AND GET ALONG WITH the person, you can politely ask if they mind discussing it or if they mind educating you about it.

If they say no, don't be offended, it's their body and their decision, but often we are happy that someone would want to understand.

Having chronic illnesses or disabilities can often lead to loss of friendships, relationships, and isolation. But whilst we may feel alone, we are not. There is an amazing community of people with chronic illness and disability online. Sometimes we are fortunate enough to meet through charity events etc.

This community is the most powerful and supportive place anyone could possibly be. No matter what time of day or night, there is always someone there. Someone who understands your pain, your emotions, the challenges you face. We are not all the same, we have different conditions, different ages, different personalities and come from different walks of life, yet none of that matters when we all need someone. There is always someone there. Despite all the challenges we all face, there is a strength in this community that makes life that tiny bit easier. This community is not only there for support, they raise funds for numerous charities and research projects, they raise awareness, they encourage equality, fight against ableism and discrimination and take to the streets and screens to implore governments to act. And there are people in this community, who despite having never met, hold an important place in my heart and I am so so thankful to have found them. ❤