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When you wake up every day disappointed about your illness, by Amani Omejer

When You Wake Up Disappointed About Your Illness Every Morning

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I’ve been awake since 3 a.m. I only went to bed at 12:30 a.m., so that definitely does not add up to enough sleep! This is a fairly normal occurrence for me, especially at the moment, and it’s so frustrating! I woke up because of the pain in my ribs and abdomen, and I couldn’t fall asleep because of it, too…

Waking up because of pain is the shittiest way to wake up and start the day… A friend recently fell off her bike and explained that she had been woken up the night before by the pain in her leg. She told me that it was such a horrible way to be woken up, and I explained that this is how I’m woken up most nights or mornings… And if I’m not waking up because of the pain, I feel pain as soon as I have woken up in the morning.

Waking up and being in pain straight away is beyond depressing and demoralizing, but I’d always pick this one over being woken up by the pain. Both options are so tough, lonely and exhausting, though. They also feel indescribable. Words somehow just don’t do being-in-constant-severe-pain justice at all.

For a while last year I noticed that I kept waking up in the morning hoping things might be different. This was more because of emotional stuff that was happening at the time, and for the months beforehand, but the experience was very similar to what I’m experiencing now, except at the moment I’m feeling this hope-for-difference because of the extreme pain I’m experiencing. Last year I was desperately struggling with grief and anxiety (as well as other chronic illness related things!). Each morning I would wake, hoping things would be different, and each morning I felt so sad, heartbrokenly disappointed, and desperately frustrated that it wasn’t… It was exactly the same over and over again, each day, every day, for ages!

cartoon drawing of girl in bed thinking please let me be well i promise i will look after myself

When I prolapsed two discs in my back in 2013, I remember having this same thing: Six months into being completely bed-bound, I was waking up every day with a heartbreaking hope for difference, and feeling completely crushed and exhausted every morning that it wasn’t. Every time I was still waking up to the same slog of navigating intense loneliness and the constant challenge of somehow getting what I needed each day when I could barely get out of bed.

Something eventually shifted, as something always does, but it wasn’t that the symptoms completely eased (the grief/angst still rear their head every day, and my back still gives me troubles), it was just that something else — something more intense — took over dominating my experience.

I was struggling with severe concussion earlier this year, which devastated me for about four months. It didn’t get better, it’s still very present every day (I discovered I have a brain injury!), but it’s just that this pain in my ribs/abdomen developed and took over as being the pain and symptom that was shouting the loudest… When my ribs/abdomen pain is raging, I don’t feel my severe joint pain (or much else) because I can’t — I’m buckled up, struggling to breathe or move beneath the agony. But when my ribs/abdomen pain reduces from a nine or 10 to a seven, I feel my joint pain again…

Ugh. Explaining exactly what is happening, and how many symptoms I’m navigating and have navigated for ages now, always leaves me feeling angry, frustrated, overwhelmed, exhausted, scared, helpless, and really f*cking heartbroken and sad…  Living with chronic illness is so, so, hard. So hard. I often can’t believe how much I’m dealing with, so I struggle to trust other people would be able to comprehend it, too.

Surely someone can’t have that many things going on and still be trying to exist?! Is that what my head says… I immediately know that isn’t true, but I often talk myself into feeling suicidal because I’m like, surely I can’t keep — and shouldn’t keep! — fighting when I’m experiencing all of this? Surely I should just want to give up and stop fighting to live…? I end up feeling embarrassed that I continue to fight despite my experience, that I haven’t just gotten the hint yet… I feel like an idiot that I’m still trying so hard to live when actually things are just so damn hard in this body of mine.

But that is all talk from my inner critic — it isn’t truth, it just feels like truth a lot. Life is difficult — it is beautiful but it is f*cking difficult, too. And we all have differing levels and types of difficulty that we experience, and in so, so, many ways, my life is nowhere near as hard as some peoples’ in the world.

I want to continue to reframe this hard time I give myself about something that is actually beautiful — the way I continue to fight despite everything I experience, and the way these experiences actually fuel my experience. It shapes my writing, my activism, the projects I begin… Friends often point out that it’s amazing how I create so much from an experience that actually could bring people to the floor and leave them there…

Our heads, our inner critics, find material for criticism in the most beautiful and inspiring parts of ourselves. The characteristics that actually need and deserve celebration become an area that I pound myself with criticism and comparison about.

But both, especially the latter, just blind us to our experience, our truth: what is actually happening and how we are dealing with it. We get blinded to the fact that we are brilliant. Living with chronic illness is like climbing Mt. Everest over and over again, every single day, except the territory always changes slightly. Nothing is predictable, and it’s really f*cking difficult.

Take time to spot the ways you deal with your experience thaGet help for someone else


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Bipolar Affective disorder.

Bipolar affective disorder, or manic-depressive illness (MDI), is a common, severe, and persistent mental illness. This condition is a serious lifelong struggle and challenge.[1]
Signs and symptoms

Bipolar affective disorder is characterized by periods of deep, prolonged, and profound depression that alternate with periods of an excessively elevated or irritable mood known as mania.

Manic episodes are feature at least 1 week of profound mood disturbance, characterized by elation, irritability, or expansiveness (referred to as gateway criteria). At least 3 of the following symptoms must also be present[2] :

Hypomanic episodes are characterized by an elevated, expansive, or irritable mood of at least 4 consecutive days’ duration. At least 3 of the following symptoms are also present[2] :

Grandiosity or inflated self-esteem
Diminished need for sleep
Pressured speech
Racing thoughts or flight of ideas
Clear evidence of distractibility
Increased level of goal-focused activity at home, at work, or sexually
Engaging in activities with a high potential for painful consequences

Major depressive episodes are characterized as, for the same 2 weeks, the person experiences 5 or more of the following symptoms, with at least 1 of the symptoms being either a depressed mood or characterized by a loss of pleasure or interest[2] :

Depressed mood
Markedly diminished pleasure or interest in nearly all activities
Significant weight loss or gain or significant loss or increase in appetite
Hypersomnia or insomnia
Psychomotor retardation or agitation
Loss of energy or fatigue
Feelings of worthlessness or excessive guilt
Decreased concentration ability or marked indecisiveness
Preoccupation with death or suicide; patient has a plan or has attempted suicide

See Clinical Presentation for more detail.
Diagnosis

Examination of patients with suspected bipolar affective disorder includes evaluation using the Mental Status Examination as well as assessment of the following:

Appearance
Affect/mood
Thought content
Perception
Suicide/self-destruction
Homicide/violence/aggression
Judgment/insight
Cognition
Physical health

Testing

Although bipolar disorder is diagnosed based on the patient’s history and clinical course, laboratory studies may be necessary to rule out other potential causes of the patient’s signs and symptoms as well as to have baseline results before administering certain medications.

Laboratory tests that may be helpful include the following:

CBC count
ESR levels
Fasting glucose levels
Electrolyte levels
Protein levels
Thyroid hormone levels
Creatinine and blood urea nitrogen levels
Liver and lipid panel
Substance and alcohol screening

Depending on the patient’s presentation, other laboratory tests may be indicated, which may include the following:

Urinary copper levels
Antinuclear antibody testing
HIV testing
VDRL testing

Electrocardiography is important in elderly patients and before antidepressant therapy. Electroencephalography and/or MRI may be appropriate for selected patients.

The treatment of bipolar affective disorder is directly related to the phase of the episode (ie, depression or mania) and the severity of that phase, and it may involve a combination of psychotherapy and medication. Always evaluate patients with mania, hypomania, or mixed episode, and those with bipolar depression, for suicidality, acute or chronic psychosis, or other unstable or dangerous conditions.[3

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When the consistent sounds of tinnitus and other sounds take over in your head.

The reason I posted this story was because I suffer from the same sounds this gentleman suffered from.  Sometimes 1-5 different sounds, and try to concentrate with that going on.  That’s why the illness has a higher suicide rate, imagine no peace in your head, constant noises that make you want to go crazy and you cant sleep, just because you want to sleep doesn’t mean the sounds sleep.  Here is one mans story.  So sad.

Body of father who told his family tinnitus was driving him crazy is found at foot of 60ft fall in disused quarry

  • James Jones, 58, had suffered with tinnitus for the past six months
  • He vanished from Llandudno home and was found dead in nearby quarry
  • Boat skipper also suffered from hyperacusis where even the sound of a plastic bag rustling would cause him great pain
  • Son Danny says noises had left him feeling anxious and depressed
The body of James Jones, 58, who told his family that he was tormented by tinnitus, was discovered at the foot of a disused quarry near his home

The body of James Jones, 58, who told his family that he was tormented by tinnitus, was discovered at the foot of a disused quarry near his home

The body of a father who told his family that he was tormented by tinnitus was discovered at the foot of a disused quarry near his home.

James Jones, 58, from Llandudno, North Wales, is believed to have fallen more than 60ft to his death at the Llandulais Quarry.

He had been suffering from tinnitus, a condition which causes a constant ringing in the ears, for six months, and his family said the noises had caused him to become anxious and depressed.

‘It all started with a simple ringing in the ears which slowly crept into his life,’ said his son Danny, 32.

‘Soon after the ringing went to catastrophic disharmonious and painful noises.

‘He had five simultaneous sounds of extreme screeching, whistling, humming, buzzing and roaring every second of every day.

‘This along with little or no sleep can send anyone into despair.’

Mr Jones, a boat skipper who would ferry engineers out to marine windfarms off the Welsh coast, had been an easy-going family man before his life was blighted by the incurable condition which affects up to six million people in the UK, his son said.

He was also diagnosed with hyperacusis, a condition where even soft background noises become deafening.

‘Even the rustling sound of a plastic bag was painful for him,’ said Danny.

‘It made him withdraw from social and professional activities and my dad became isolated, anxious, stressed and depressed

Earlier this month, Mr Jones had vanished from his home. On July 9, he was found dead by police at the quarry.

An inquest has been opened and adjourned by the North Wales coroner.

Tinnitus is more common in people aged over 65, but it can strike at any age.

There is no single treatment for the condition and research to find a cure is ongoing.

Mr Jones's sons Wesley and Danny, pictured with their father and mother, Maria, are raising money for research into tinnitus

Mr Jones’s sons Wesley and Danny, pictured with their father and mother, Maria, are raising money for research into tinnitus

The charity Action on Hearing Loss describe it as an ‘invisible condition’ which can cause depression, anxiety and sleep problems.

Now Mr Jones’s family have launched a campaign in his memory to raise funds for research into tinnitus, and Danny and his brother Wesley hope to make £5,000 for charities including the British Tinnitus Association.

Mr Jones was due to be his son’s best man at his wedding next year.

‘He was a true gentleman, who was wise beyond belief,’ Danny wrote on Facebook.

‘He taught me everything I know, we shared the same thoughts, goals and ambitions. We were that close he wasn’t just my Dad.

‘He was also my business partner, my mentor, my best mate and my best man to be.’

CONSTANT RINGING AND NOISE: WHAT IS TINNITUS?

Tinnitus is the perception of sound in the ear, usually a ringing noise, although it can be a high-pitched whistling or buzzing, ringing, or hissing.

It’s estimated that seven per cent of men and women will visit their GP about it at some point.

For one in 100 sufferers, quality of life is severely affected, and it has been linked to depression, work and relationship problems and, in rare cases, suicide.

It’s not known what causes it, although in some cases it is linked to hearing loss – one theory is that when some sounds can no longer be heard, the brain overcompensates and creates phantom noise.

There is no cure, although treatments such as maskers (ear-plugs that generate white noise to try to block out tinnitus noise), antidepressants, and cognitive behavioural therapy, which aims to help patients to ignore or think differently about their tinnitus, can help.

Tinnitus is often worse in quite environments so some people benefit from listening to soothing sounds, such as the sound of the ocean.

The condition is most common in people over the age of 65 but it can affect people of all ages.

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