What its like to be a MAN with ME/CFS

[snowathlete]

I am a 30 year old man, and have had ME for 3/4 years now.

Probably the thing i strugle with more than anything else with this illness, is how castrated i feel by it. I have lost my strength completly, my physical strength.
I struggle to pick up my daugher who is almost one.
I struggle to move about in the most basic ways; yesterday i tried to go from sitting on the floor to sitting on the sofa and in trying to raise myself up, i couldnt get back and high enough and came crashing down in front of the sofa, scraping my back against the wood and bruising my bum.
My arms ache if i try to use them, even to lift something to my mouth to eat.
I have to walk slow if i walk at all, and have to keep asking my wife to slow down, even though she isnt walking fast. People more than twice my age strole past me at pace.
I get out of breath and my legs burn like coals everytime i climb the stairs.
If i ever go out i am looking for somewhere to sit down, at the supermarket, wherever.
I cant lift anything heavy; today at the shops i used one of those wheeled baskets, which are great for me, but when i got to the checkouts i had to life it to the till. I struggled, and when i got high enough the assistant took it from me, and it was a breaze for him, to him, it weighed nothing, to me it was a case full of lead.

You dont realise it when your a man, not until its gone, but just in your everyday existance, you exercise your masculinity in a thousand ways, you have physical strength even if your not a bodybuilder or pro wrestler - your a lion. And you dont even think about. I know that women with this illness have the same lack of strength, and that is a burden (ironic accidental pun) for them too, but as a man i just feel like that aspect of it is quite cruel for a man.

In summary, from a male point of view, with this wretched illness, im a pathetic specimin, and im sick of it. What i would give to feel vigor and strength again.

 

[kaffiend]

I can sympathize. Even as I appeared to be an athletic person, I had to sit down on benches outside the grocery store because I couldn't make it to my car. On days I felt I could leave the house, I would make it to my office only to lay on the floor or put my head on the desk for hours on end.

Low-dose hydrocortisone helped me tremendously with the type of fatigue that would occur upon exertion. Post-exertional stuff (days later) seems to be a different but related story.

 

[*GG*]

I understand some of what you are saying. I thought some day I would have a wife and children, but I don't think it is a good idea for me. I have been improving in the last couple of years, but I have been ill for nearly 9 years now. I think having to raise children would just put me in the grave that much sooner. I guess I am trying to practice self-preservation. Perhaps a "cure" will be somewhere down the road and old age will not be so bad, I have a decade or so on you.

Have you heard of LDN? You should research it.

GG

 

[snowathlete]

I'm interested and aware of LDN. I have steered away from immune modulators so far but if my methylation treatment doesn't work then LDN is next on my list, along with antivirals.

 

[Gavman]

I'm 30 and I struggle with the strength thing too, snowathlete. To compensate i've learnt how to very effectively use my body. Lifting anything up, look up a little (so your spine is quite straight) and bend your knees, use your legs like a lunge to get the object/daughter in the air. Holding things close to the body decreases bicep strain too. I do mma which has helped but it becomes hard going to classes due to the cardio/strength the teachers expect you to use.

Hope you can work things out!

 

[pamb]

Hi Snowathlete,

I gotta agree with you. A man expects to be able to 'do' things and not being able to is a huge adjustment. I see it from the other side, wife of an ME guy, and it breaks my heart. He constantly over-extends, just to keep some balance in our relationship and give back, and I constantly let him. It's just the way it is.

Best wishes to you in finding things to make it a bit easier. It would be so nice if there was just one recipe for this thing, instead of 1000+

 

[taniaaust1]

Thank you for sharing what it is like for a guy. I'd never thought before about how it would impact masculinity for a guy.

 

[meandthecat]

An interesting post snowathelete; as much as anything this is a social disease. When we cease to be able to play our allotted roles we are cast adrift and often rejected. I have found as a large muscular man a level of contempt and disregard that I have rarely experienced.

As I have recovered, this has decreased; not just because I can do more but because I can project my will.

Just like driving, any social interaction requires that you hold your space, something I found impossible when I was really bad. It was awful to be trampled underfoot, any illusions of living in a sympathetic or supportive society were quickly destroyed.

I discovered righteous anger, I used it to bridge the dreadful black pit of exhaustion that seemed to suck in everything and now I can deploy it when necessary, usually around doctors. The power of creative visualisation ( the Dark Side) can be extraordinary.

I might sound like I am a psychosocial zealot, no way. This is a biological catastrophe that unleashes psychological mayhem and anything I have achieved has been built upon a physical base, mostly nutrition.
When it's sink or swim time i'll use any tool I can get to keep me afloat, but I don't know what a cure would look like anymore.

May the Force be with you

 

[Calathea]

I think disempowerment is a mammoth problem for anyone with ME, but I do agree that it's more tied in with the masculine identity by our culture. (Of course, there is then a corresponding problem that our culture expects women to be disempowered anyway.) Just as everyone who is unable to have children because of ME grieves for that, there's more stress on women in that area. ME is already an invisible illness to such a large extent, and since it's considered a women's illness, men with ME are made even more invisible.

I'd be interested to do a poll on how many men and women we have. It would only reflect this forum, or specifically the people answering the poll in this forum, rather than everyone with ME, plus misdiagnosis is a common problem and we don't know how many people in this forum have true ME (not that the others aren't welcome!). But it would still be interesting to try. I'm struggling with how to word the questions, though. I think it's important to include transgendered folks, as hormones are so crucial to this illness and hormonal treatment will probably impact on it. Right now I'm thinking of the following options:

* Male
* Female
* Female-to-male transgendered
* Male-to-female transgendered
* Other
* Prefer not to answer

Normally I'd prefer to specify cisgendered for the first two, but I don't think many people will know what that means and would avoid the poll as a result. And should I have to explain what "other" means? I should probably have a paragraph at the top explaining all of this, really, shouldn't I, as the last thing I want to do is suggest that being, say, a transwoman means that you're not a "real" woman, and I loathe it when forms give male/female/transgendered as the only options.

 

[chili]

Hi Snowathlete, I know that you're relatively young for low testosterone, but you may want to get it checked. I had not only low testosterone, but low LH, which is consistent with a hypothalamic or pituitary cause of low T, which is what many experts believe is at the heart of at least the endocrine part of the problem. Supplementation with Androderm has helped me somewhat, although I have to admit that I recovered somewhat before I even started the testosterone.