ME/CFS AWARENESS...

[Aviela]

Well, it's May and it's awareness month for ME/CFS (Myalgic encephalomyelitis/chronic fatigue syndrome). It so happens that I've been dealing with a big 7 day crash. In other words all symptoms flared up and laying down for 7 days. Although I know this crash is not yet over even though I've improved enough to do some errands today, at times it feels like starting from scratch. ...having to build myself up again and some how manage all of life.

I'm humiliated to say that my home is in poor condition because I've had a very poor year and a half. However, I'm at the point of saying enough is enough. I'm not going to walk around feeling shame any more. ...shame when others regardless of whether or not they are a part of the healthcare system etc. attempt to shame me regardless of whether or not it's intended. I heard a saying this past while: 'don't let those who don't matter much matter too much'. Meaning...I need to stop casting my pearls before swine. This is difficult though when we need doctors and others in our lives. However, the fight must go on.

This recent spout of bravery was spurred by my experience with three health care professions this past year and the last was the 'straw that broke [my] back'. Today I came across this video and it said it all. It was truly validating...gave me a sense of camaraderie...diminished the feeling of isolation. Here goes...enjoy the tears and laughter; you're not alone.

 

[timothyu]

That's right, May 12th. Hang in there and nap as often as you want. Beats trying to pace yourself or waste time over who without knowledge or experience judges you.

 

[Aviela]

That's right, May 12th. Hang in there and nap as often as you want. Beats trying to pace yourself or waste time over who without knowledge or experience judges you.

Thanks

 

[bmjackson]

Hugs to you @Aviela having been through it for many years.

 

[Aviela]

Hugs to you @Aviela having been through it for many years.

Thanks hugs back at ya

 

[timothyu]

Today I came across this video

It is interesting that just this last week I had a procedure where the nurses were familiar with ME, the Doc had shrugged it off, but the anaesthesiologist got snarly when looking it up on her smart phone found she had no experience in administering to someone with ME. I immediately became the bad guy and my diagnosis questioned simply because her status was in tatters as she had no idea how to administer to such a condition due to drug intolerance. lol People is funny.

 

[Aviela]

It is interesting that just this last week I had a procedure where the nurses were familiar with ME, the Doc had shrugged it off, but the anaesthesiologist got snarly when looking it up on her smart phone found she had no experience in administering to someone with ME. I immediately became the bad guy and my diagnosis questioned simply because her status was in tatters as she had no idea how to administer to such a condition due to drug intolerance. lol People is funny.

I know what you mean. It’s like they can feel threatened when they don’t understand or aren’t perfectly knowledgeable. Instead of just feeling comfortable enough with themself to just say I wasn’t aware of that or I’ll need to check on that or I’ll refer you to some who can help. I find at moments such as this it shows just how emotionally aware a professional is. I’m currently at the point of being tired of coddling ‘their’ emotions and ego; I need to care more about my own. I once again let the balance between caring about others and caring about myself become too off balance. I then become angry with myself and frustrated with others. Because of the unawareness, dealing with the healthcare profession and the community can be a balancing act. It’s tiring and isn’t fun being constantly misunderstood.

 

[mama2one]

It’s tiring and isn’t fun being constantly misunderstood.

agree

 

[Aviela]

understand where you're coming from as I have fibromyalgia and when trying to explain it to someone their response was "we all have aches and pains"

it felt dismissive

don't worry about the house and take care of you
once I was on an upswing and started majorly working on house/yard and husband said "don't over do it
said "I'm feeling fine" but then paid for it with 4 mos of barely moving so learned my lesson

just do what you can do when you can
blessings

Blessing to you as well. Yes, unfortunately, I’ve heard the same and have also been told, we all get tired. I feel for you...I’ve been diagnose with ME/CFS and fibromyalgia. I’m wanting to get things more manageable at home and doing it myself hasn’t been working so I’m thinking it best to get some help.