Tag Archives: Chronic pain

Lessons I have learned

Panic-attack

Panic-attack (Photo credit: Wikipedia)

The lady who had had her first ever proper panic attack a year ago, when she couldn’t breathe, and rapidly became hysterical in her bathroom away from her kids, knows how she can be challenged being a single mum to four kids, that being a pretty time consuming.

The challenges have been huge and diverse in the last year.

For this Cornish woman her husband is the unsung hero in her tale. He helps her get dressed and use the bathroom, wash, cooks, cleans, does most of the childcare, and pretty much has an elderly person for a wife in return for his efforts, a lot of the time.

Have you any idea what it’s like to have to get your husband to help you with toiletting? Or how awful it is to have to get your eight year old to put your socks on. To have to call your son to watch you get up the stairs in case you fall? Or to have to call your teenage daughter up to your room as you can’t open the curtains? Or to train your two year old to pass everything at floor level up to you, as you can’t bend down? How guilty you feel that you aren’t like the other mums, instead your children also help care for you? {Crossing the line.}

Let us look how she now fulfils all the needs and requirements when she as a seriously ill woman is doing the job of 2/3 people.

What can a person do when she is in severe pain everyday to varying degrees and when the  kidneys are not working properly, the immune system at about 40%, her pericarditis playing up (swollen third chamber of my heart) each day she spends half hour getting her back, knees, hips and knees moving before she can focus properly.

Like many chronic pain patients she has become highly skilled at hiding her pain over the last 24 years, and very few people will see or experience the vulnerable and broken person, that exists through the cracks.

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To remember:

it doesn’t matter what anyone else thinks

We are all in charge of our own destiny and happiness, + must own our decisions, as they are ours alone to make. Whether that’s, medication, lifestyle, parenting, a job, relationships, moving across the country for a shot at happiness. Own it. 

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Preceding articles:

What would you do if…?

What would you do if…? Continued trial

What Are You Seeking?

Though disabled in the eyes of society able to do great things

I will not be defined

Fibromyalgia & ME/CFS Awareness Day

See the conquest and believe that we can gain the victory

The Goal

Cosmina Craciunescu looks on Positivism

A quadruped amputee not stopped from wanting to achieve her dreams

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You've gotta have Gumption....

I’ve been debating for a while where I’m going with this. The cold, hard truth of the matter is that I’ve had very little time for anything other than being mum, and trying to keep my body working as best it can. I can’t remember the last time I was able to read a paper, or watch a full film.

Turns out being a single mum to four kids is pretty time consuming, who knew!?

The challenges have been huge and diverse in the last year. How do I fulfill all their needs and requirements of me when I am one, seriously ill woman doing the job of 2/3 people? The logistics alone have been a nightmare, getting everyone where they need to be and collecting them, making sure they have all the kit they need for the various activities they do, homework, food, washing, teacher appointments, councilling, sports, friends…

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Filed under Being and Feeling, Health affairs, Re-Blogs and Great Blogs

Though disabled in the eyes of society able to do great things

How common are specific disabilitiesHow many people do not take it for granted that we can make our bodies move about the world as we command them to. But lots of people have no such blessing. There are even people who remain conscious but are unable to move, communicate, or even breathe on their own. For them their body may be like a prison in which they are closed up and have no prospect to become liberated. Can you imagine how it must feel , knowing you never get out of that prison, which limits you to one particular place where no easy communication is possible?

People can be periodically blocked or not able to move any more. Others can have periodic paralyses as a genetic disorder characterized by episodes of sudden muscular paralysis. Again others may have got the bad news they shall become more and more limited in what they can do to end up to be fully limited in their actions and having to face death, totally paralysed. For them it is not just for minutes or hours that muscles become flaccid and useless. For several people there are no such episodes which are reversible with treatment of abnormal potassium levels, and in most cases aren’t fatal.

What would you do if you come to know your body is deteriorating?

English: 1934 Goudey baseball card of Lou Gehr...

English: 1934 Goudey baseball card of Lou Gehrig of the New York Yankees #61. PD-not-renewed. (Photo credit: Wikipedia)

What if you are a lover of movement, a dancer or a baseball player like Ludwig Heinrich Gehrig, better known under Lou Gehrig and his byname the Iron Horse or Iron Man (born June 19, 1903, New York, New York, U.S.—died June 2, 1941, New York City). He was one of the most durable players in American professional baseball and one of its great hitters, but had to hear terrible news after a year of speedy decline, falling several times, not having strong wings any more, in 1939, getting diagnosed with a rare nervous system disorder, amyotrophic lateral sclerosis (ALS); this disease has come to be known as Lou Gehrig’s disease.

A sportswriter observed that Gehrig looked “like a man trying to lift heavy trunks into a truck.”

When the Yankees arrived in Detroit for a May 2 game, Gehrig was hitting .143. He took himself out of the lineup, telling McCarthy it was “for the good of the team.” Gehrig took the lineup card to home plate with Babe Dahlgren‘s name at first base. The Detroit fans applauded for two minutes. Gehrig tipped his cap and disappeared into the dugout and the record books. He would never play another game. His streak of 2,130 games was a record that would stand for 56 years. He finished with 493 home runs, 535 doubles, 162 triples, a .340 batting average and 1,990 RBIs, third-highest among all major leaguers. {Encyclopedia of World Biography | 2004: Lou Gehrig}

On May 2, he took himself out of the Yankees’ lineup, and he never played baseball again. He left baseball with a career batting average of .340, with 493 home runs and 1,990 runs batted in, all during regular season play. In seven World Series (34 games), he batted .361, hit 10 home runs, and drove in 35 runs. {Encyclopedia  Britannica – biography:Lou-Gehrig} He was elected to the National Baseball Hall of Fame in 1939.

What if you start feeling those early symptoms which may only involve mild weakness, slurred speech, or twitching?

However those patients who are slowly locked inside their bodies, losing their ability to control any movement should not loose hope for what they can achieve. Even when in the inevitable conclusion, the unlucky victims getting unable to even speak or swallow there are ways out to be able to communicate. Though they might come completely dependent upon others for total care, some of the victims have proven to be stronger than their disease and mad sure they could mean something special in our society.

When sensation and the mind are left intact, leaving the patient helplessly aware of their imprisonment it is a matter of daring to not allow the adversary pull you down. Do not allow yourself being pulled down neither by those around you, who may loose patience with ‘a case like you’, but use that still active brain to show the world you are able to think properly.

English: Professor Stephen Hawking in Cambridg...

Professor Stephen Hawking in Cambridge, UK. Español: El profesor Stephen Hawking en Cambridge, Reino Unido. (Photo credit: Wikipedia)

Renowned physicist Stephen Hawking, who has surpassed typical survival expectations by decades, is one of the most beautiful examples how a person can be stronger than his captor or retainer. At his last visit in Belgium, last Autumn, he gave a marvellous interview on the Flemish television, where he was followed for his whole stay in that small country where they look up at that grate man.

After having been an outstanding student at St. Alban’s School he received a first-class honors degree in physics at University College, Oxford (B.A., 1962), Hawking set off for Cambridge University to begin studying at Trinity Hall, (Ph.D., 1966) and looking at the themes of cosmology which would preoccupy him throughout his life.

Stephen William Hawking was elected a research fellow at Gonville and Caius College at Cambridge. Though it was already in the early 1960s that Hawking contracted amyotrophic lateral sclerosis but that did not stop him to continue with what he liked best. He continued to work despite the disease’s progressively disabling effects and became considered the most insightful theoretical physicist since Albert Einstein. with good reason he gained a worldwide following, not only among other scientists, but also among a great many laypeople and as an author and lecturer, he has achieved celebrity status.

Black & White photo of Hawking at NASA.

Stephen William Hawking, CH, CBE, FRS, FRSA , English theoretical physicist, cosmologist, author and Director of Research at the Centre for Theoretical Cosmology within the University of Cambridge. – Here seen at NASA in the 1980s.

For religious people his explanation of the Big Bang theory may be very revealing. Hawking is not afraid to question such idea if there had been a beginning to space-time (a big bang), or whether one state of affairs (one universe, to put it loosely) simply gave birth to another without beginning or end. He also dare to tell that there is so much we do not know yet and that we may not underestimate the force of nature, that new universes might be born frequently through little-understood anomalies in space-time. He also investigated string theory and exploding black holes, and showed mathematically that numerous miniature black holes may have formed early in the history of our universe. When humans develop the unified field theory, said Hawking, they will “know the mind of God.”

His goal to come to a complete understanding of the universe,

“why it is as it is and why it exists at all.”

is something he nor we shall be able to reach, but for sure he has proven that we do not allow a disease to imprison or chain us and to have it to make us useless. He is the living proof, that though disabled, a human being can be able to do much.

 

Be it ALS, MS, AS, Transverse myelitis, High-Level Quadriplegia, Akinetic Mutism, Fibromyalgia, Locked-In Syndrome or any other nightmare diseases, let it not destroy your mind, your way of thinking your way of being yourself a “I Am” wroth being.

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Please do find also a list of some famous and well known people with various disabilities and conditions: Famous People with Disability

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Disability Videos
Selection of video clips providing information for and about persons with disabilities in video format.

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Preceding articles:

What would you do if…?

What would you do if…? Continued trial

See the conquest and believe that we can gain the victory

The Goal

Cosmina Craciunescu looks on Positivism

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Further reading:

  1. Civil Rights Worldwide – Disability
  2. Silence as Acquiescence: On the Need to Address Disability Stereotyping in Kocherov and Sergeyeva v. Russia
  3. What does body identity mean today?
  4. Life in chronic pain
  5. Access for All: Agenda for Americans with Disabilities – 3 New Bills
  6. Disability: Benefits, Facts & Resources for Persons with Disabilities
  7. It’s All Relative
  8. We can do Anything, but hear!
  9. “The Danger of Silence” by Clint Smith
  10. I will not be defined
  11. Schrodinger’s Chiari
  12. Your daughter has ABS…
  13. My Fibromyalgia Awareness Day
  14. Fibromyalgia & ME/CFS Awareness Day
  15. The Burden of ME/CFS (Chronic Fatigue Syndrome)
  16. Ableism & Hate Crime – Disability
  17. Suffering with M.E..
  18. Bhil family struggles with three disabled members
  19. DWP: Disabled Woman, Persecuted.
  20. The Daily Fix: The Jeeja Ghosh judgement is an important moment in the fight for disability rights
  21. Entertainment – Disability
  22. When Snapchat Filters Mock Your Medical Condition
  23. It’s wicked to mock the afflicted – Kenneth Howerd…
  24. Leader of the PACK
  25. To J.K. Rowling from Us
  26. The Book That Changed My Life The Most
  27. Assistive Technology – Disability
  28. Update and NoobGrind GTX 1080 article
  29. The Scars From Which I Have Grown
  30. Disability in the Church
  31. Pastor Lingerfelt, Do We Look “Retarded” To You?
  32. Want to Be an Awesome Ally for People with Disabilities?
  33. Over-Explaining
  34. Sunshine or Rain
  35. When Strength Isn’t Enough
  36. A Circus Stole Some of My Monkeys!
  37. Intrview: My Story – Living with Aspergers Syndrome
  38. “I just wanted to die” – living with leprosy in Myanmar.
  39. What is on your bucket list?
  40. She might have lost both her arms and legs but that’s not stopping Shalini from participating in a marathon contest!
  41. Lessons I have learned
  42. The cost of living (with a disability)
  43. Bringing Disability Accessibility to Colchester: How YOU Can Help
  44. Euphemistic Terminology
  45. Time Passes…Life Goes On…Even Under Seeming Odds
  46. Bad to worse to… hopeful?
  47. Not much to say
  48. Life is Short, True Love is Rare….

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Filed under Being and Feeling, Health affairs, History, Positive thoughts, Uncategorized, Welfare matters