Faking Healthy (Part 3) What do you think?

In my first “Faking Healthy” post I explained how many chronically ill patients tend to fake being healthy in order to maintain relationships with people around them who are less understanding about the complications poor health can cause. I explained how these patients feel like they have to put up a wall and often need a break from it because the forced masquerade is tiring. Here, I’ll explore one possible complication from this unfortunate but uncommon circumstance.

A few weeks ago I asked many of you on twitter and several of my personal friends who also have chronic illnesses to answer a few questions. I asked “Where do you go when you need to let the walls down and just exist?” I got several different answers. Online, the bathtub, to a friends house but the most frequent one I got was “I go to bed.” 

Of those who went to bed for down-time/recuperation I asked them if the majority of their time in bed was spent sleeping or reading, watching tv or any other awake activity. Most people didn’t really end up spending time asleep in bed, in fact spent most of it reading, watching tv, thinking or playing with their phones, and those people seem to have trouble sleeping when they do finally go to bed to sleep. 

Now, this is in no way proven or even a real study by any means and I DEFINITELY do NOT think this is the only or even major reason for people being unable to sleep with chronic illness - this is just my idea - but I definitely think there is a link between spending so much awake downtime in bed and being unable to sleep once you actually go to bed to sleep. Remember Pavlov’s dog? If your brain doesn’t associate the bed with sleep how are you going to be able to sleep when you need to? Your brain thinks you’re going to watch tv, read, etc.

So I’m proposing a challenge to all of those who do find they have this problem. It’s just an idea but it may work! 

We need a “safe zone” of sorts. We need a place to go and be uninterrupted where we can let our walls down without being ridiculed or rejected, where we can do whatever we want in privacy without feeling we need to hide. If we can’t change those around us to be more understanding, maybe some of us can find a way to cope.

So guys, tell me what do you think?

Letter to Many People?

I admit, if I had known that blog was going to encourage people, I would have put MUCH more care into things I said and I would have said more. 


Here’s what’s missing:

What we really need is not pills or hope of a cure but love and support. We need people around us who care, attempt to understand and actively try to help - even just by “being there” for the person sick. These diseases make us feel alone because there’s a divide between “healthy” and “sick.” The “healthy” seem to think that the “sick” are making it up for attention and tend to walk out from either frustration with the patient or from the feeling of “i can’t do anything about it.” These diseases are bad enough - we don’t need you walking out on us too. 

If you have someone in your life who is chronically ill and you feel that you can’t do anything about it - you’re WRONG. You may not be able to cure the disease but you can ease their suffering. Let me say that again, that was good…

YOU MAY NOT BE ABLE TO CURE THEIR DISEASE BUT YOU CAN EASE THEIR SUFFERING! 

I want to say something to everyone with an illness who feels they’re alone - YOU ARE NOT ALONE. Millions of people feel this way. DO NOT give up. I know, it makes it worse, it makes you depressed, I understand and I have been there. It does get better. 

I also want to say something to everyone with someone in their family who is chronically ill (whether you believe it or not): I don’t care what the diagnosis is they are not making a fuss over nothing. Your job as someone in their life that they care about (family, friends, boyfriend, girlfriend, best friend,etc) is to support them.

You’re supposed to care about them, to try and understand what they are going through and - what I feel we need the most - is try to go through it with them. IF there are days where they can’t get out of bed - go see them at home. If you live with them (spouses…) jump in bed with them and watch whatever they’re watching.(Side note: DO NOT make it about you and attempt to get sex. That will NOT leave this person feel cared about. More like used.)

Love is an action word, people. It’s time we started acting like it. 

PS To those caregivers who DO get it: Thank you for understanding that they wouldn’t be like this if they got a choice. Thank you for understanding that even if you can’t fix it - you can help it. It’s not so bad when you have someone with you to carry the load.

Source: bclarkson.com

Pretending I’m Not Sick: Review

Yesterday I decided to try and pretend I wasn’t sick. I’d do what I’d do if I didn’t have FMS. There were two major flaws in this plan.

The first was that I had to fuel this with coffee and my stomach really can’t handle the acid. About 5pm I started to have heartburn. I was going to go to a concert but that effectively canceled those plans as the very moment I felt the heartburn - I also got tired and achy.

Which leads me to the second major flaw in this plan: the morning after. As anyone with Fibromyalgia knows the morning is one of the worst times of day for us. We’ve been lying in one position too long and often several joints hurt because of it. Well, that’s partially why….but I digress.

Currently it feels like I’ve pulled every muscle in my thighs, back and arms. More than likely, I didn’t. It’s just “body aches” from FMS and from “over-doing it.”

So why did I do it? For those of you without FMS. I am currently lying in bed at 12:13 because all the cleaning I did made me very tired. So much so I apparently missed 1/2 the day. I’m also in quite a bit of pain that could have been avoided if I just did what I knew was well within thin the limitations set on me by FMS.

If you know anybody with Fibromyalgia or any other autoimmune disease I want you to think back at how many times you called them lazy. I want you to look back at how many times you said “well, you don’t look sick!” if you never did, great, but I’m not talking to you. Diseases like this one cause a lot of pain with minimal effort and people often never take the time to understand.

If you know anyone with FMS I suggest that you think twice before assuming that they’re just being lazy.

Unknown Symptoms of Fibromyalgia.

Fibromyalgia is an autoimmune disease characterized mainly by chronic, widespread pain and fatigue. It is highly misunderstood and there is not a lot known about it. The diagnostic material has not been changed since 1991 and - to be honest - should be.

This list was created by a support group of about 300 Fibromyalgia patients. They put this together in order to be able to understand what was going on in their own bodies and what exactly was from the disease and what was not. It turns out that of the patients that received this they ALL had over 50 of them.

I am a fibromyalgia patient and I personally have 56 of these symptoms. Some of these things i believe we noticed as a hypersensitivity to observing what’s going on. I think sometimes we feel we have to know what’s going on with us so we can be able to tell the doctor. We don’t want to miss any relevant information because after years of being told that they don’t know what’s wrong with you….we feel we must be overly thorough….however that is just my personal opinion and is in no way proven.

60 Symptoms of Fibromyalgia


1. PAIN- in the muscle: often described as aching, burning, throbbing,
gnawing, shooting, tingling. Almost always exacerbated by exercise and
may or may not be present at rest. Can be migratory and differing from
day to day.

2. FATIGUE- From feeling tired to exhausted and requiring rest periods
during the day.

3. SLEEP DISTURBANCE- not being able to fall asleep and or able to
stay asleep. Unrefreshing sleep patterns ” feels like I haven’t
slept.”

4. PARESTHESIA- numbness or tingling. ( non dermatomal)

5. DEPRESSION- most often reactive as with chronic pain condition.

6. ANXIETY- may include panic attacks.

7. PERSONALITY CHANGES- usually a worsening of a previous tendency.

8. MOOD SWINGS

9. SUBJECTIVE SWELLING OF EXTREMITIES- i.e. feels swollen but no-one
can find anything.

10. HEADACHES- tension and or migraine.

11. COGNITIVE FUNCTION PROBLEMS: calculation difficulties, memory
disturbances, spatial disorientation, difficulty with concentration,
short
term memory loss.

12. FREQUENT UNUSUAL NIGHTMARES- or being unable to dream.

13. DYSTONIA- stiff muscles due to involuntary contracture. Difficulty
in moving tongue to speak.

14. FREQUENTLY SAYING WRONG WORDS

15. BURNING SENSATIONS

16. LIGHT HEADEDNESS- ”Fibro Fog”, spaced out, cloudy.

17. MORNING STIFFNESS

18. EASY BRUISING

19. MILD BUTTERFLY RASH- (LUPUS TYPE) May be photo sensitive.

20. NEUROGENIC INFLAMMATION- rashes, may be severe itching. NI causes
the symptoms and signs of Dermatographia.

21. DISEQUILIBRIUM- Vertigo

22. MUSCLE WEAKNESS- variable with no ”objective” abnormality to formal
testing.

23. SCIATICA- like pain

24. PHOTOPHOBIA- Intolerance of bright lights.

25. ALTERATION OF TASTE, SMELL and HEARING.

26. LOW FREQUENCY, SENSORINEURAL HEARING LOSS.

27. DECREASED PAINFUL SOUND THRESHOLD.

28. TINNITUS- ringing in the ears.

29. OCCASIONAL EXAGGERATED NYSTAGMUS- involuntary rapid movement of the eye
ball.

30. CHANGES IN VISUAL ACUITY- impaired function of the smooth muscle
used for focus as well as skeletal muscles for tracking.

31. INTOLERANCE OF ALCOHOL

32. ENHANCEMENT OF MEDICATION SIDE EFFECTS

33. INTOLERANCE OF PREVIOUSLY TOLERATED MEDICATIONS

34. WEIGHT CHANGES- usually gained due to the lack of exercise through
pain and or tricyclic antidepressants

35. RESTLESS LEGS

36. HEIGHTENED AWARENESS- of symptoms of HYPOGLYCEMIA 9 when blood sugar
falls)

37. POSSIBLE CARBOHYDRATE INTOLERANCE

38. SYMPTOMS OF IRRITABLE BOWEL SYNDROME (I.B.S.)

39. HEARTBURN- secondary to I.B.S.

40. SUB-NORMAL TEMPERATURE

41. NIGHT SWEATS.

42. SENSITIVE TO TEMPERATURE EXTREMES

43. HEART PALPITATIONS

44. BREATHING DIFFICULTIES

45. HEART MURMUR-Mitral Valve Prolapse appears to be more symptomatic
in FM than normal.

46. IMPOTENCE- reactive and occasionally.

47. SEVERE PREMENSTRUAL SYNDROME

48. FREQUENT VAGINAL YEAST INFECTIONS.

49. MUSCLE SPASM- twitching.

50. NON-CARDIAC CHEST PAIN- which may simulate cardiac disorder.

51. PELVIC PAIN.

52. ABDOMINAL WALL PAIN.

53. DRY EYES AND MOUTH.

54. TEMPOROMANDIBULAR JOINT DISORDER- usually due to abnormal muscle tone.

55. RAYNAUD’S- like symptoms.

56. CARPAL TUNNEL SYNDROME-possible related condition.

57. HAIR LOSS-secondary to psychological stress from FM.

58. VULVODYNIA- Vulvar discomfort or pain, burning, stinging and irritation.

59. PLANTAR ARCH-or heel pain. Exacerbated in FM.

60. INABILITY TO RELAX MUSCLES 

Source: bclarkson.com