Men's experiences with ME/CFS

[bearVSshark]

Hi all,

I mentioned this topic when I wrote my 'introduce yourself' post but wonder if this is a better place for it.

I'm interested in hearing from men regarding their experiences of having ME/CFS, particularly in regards to lifestyle, notions of masculinity, and especially, being a father/deciding not to have kids.

I've recently turned 30, having had this for about 5 years, and the above issues are things I'm starting to think more about so would love to hear from others. My gf is a couple years older and wants kids and I'm starting to think about how/if I could cope with that. Especially as I'm lucky enough to be able to work full time, I don't think I could cope with doing both.

I know ME predominantly affects women and as such so many personal accounts are written from a female perspective, so I've found it difficult to find any personal accounts of men living with this.

Hope that's ok. Look forward to hearing from people.

Matt

 

[RWP (Rest without Peace)]

Hi @bearVSshark

Thanks for your post. I wish we had a Men with ME support group on this website. I am the leader of the Christian group. If you haven't already seen this, there is a general support group led by a male. I don't know if it's still active or not:
http://forums.phoenixrising.me/index.php?xfa-groups-group/cfs-support-group.64/group-detail

Perhaps others would like to join in as well.

RWP (Rest without Peace)

PS. If you search the site, you should find "MEN only" threads that already exist. Also, if you search the internet or Jen Brea's Twitter/Facebook, she has posted links to the UK MEA and other ones that deal with men.

 

[RWP (Rest without Peace)]

One more quick resource if you need it.

Jamison Hill has written about men with ME issues in newspapers over the years.
https://jamisonwrites.com/about-me/

RWP

 

[bearVSshark]

One more quick resource if you need it.

Jamison Hill has written about men with ME issues in newspapers over the years.
https://jamisonwrites.com/about-me/

RWP

Yeah I've read some of his writing when I used to be on twitter. Lots of stuff regarding how it affects his idea of masculinity which is interesting.

 

[bearVSshark]

Hi @bearVSshark

Thanks for your post. I wish we had a Men with ME support group on this website. I am the leader of the Christian group. If you haven't already seen this, there is a general support group led by a male. I don't know if it's still active or not:
http://forums.phoenixrising.me/index.php?xfa-groups-group/cfs-support-group.64/group-detail

Perhaps others would like to join in as well.

RWP (Rest without Peace)

PS. If you search the site, you should find "MEN only" threads that already exist. Also, if you search the internet or Jen Brea's Twitter/Facebook, she has posted links to the UK MEA and other ones that deal with men.

Thanks for this info. I'll have a search around and try and find some of these other threads. I've looking around the internet for a while but struggled to find anything.

I wonder why there is less written from a male perspective. I suppose, if I'm anything to go by, men are perhaps less likely to open up and discuss things like this. I'm particularly bad at telling people about my ME, I generally just take a 'just get on with it/ keep it to myself approach', which probably doesn't help with understanding or support!

 

[Tally]

I wonder why there is less written from a male perspective.

About 70% - 80% of M.E. sufferers are women.

@Cort Johnson has one of the most prolific ME/CFS/Fibromyalgia blog. Whitney Dafoe also wrote a blog while he could still communicate. Jamison Hill was already mentioned. @Tom Kindlon has a very active twitter account. @Ben H has a twitter account. @Keith Geraghty also has a twitter account but it mainly focuses on research. Ryan Prior also has a twitter account, not so much talk about ME/CFS but he made a documentary Forgotten Plague which also features Jamison Hill so you can even watch men struggling with M.E. if reading is too exhausting.

Getting tired of typing so maybe someone else can continue but you can also try reddit. Majority there is male.

 

[bobp1970]

Interesting Topic.

For me it's been about alot of the little things. I can't do anything around the house apart from some domestic chores so no DIY or gardening. When we are out if we buy anything then my wife carries it around. I have to ask her to do any lifting for me. My wife is also the main wage earner.

Our relationship has never been based on male and female roles, we don't believe in all of that stuff, but I have found it hard and I suppose embarrassing when we are out and she is doing the carrying. I also feel less able to protect my family should the need arise.

I'd like to say that I'm not so bothered about my masculinity but honestly it does make me feel less of a something. A man or a just a person I'm not 100% sure.

 

[RWP (Rest without Peace)]

Thanks for this info. I'll have a search around and try and find some of these other threads. I've looking around the internet for a while but struggled to find anything.

I wonder why there is less written from a male perspective. I suppose, if I'm anything to go by, men are perhaps less likely to open up and discuss things like this. I'm particularly bad at telling people about my ME, I generally just take a 'just get on with it/ keep it to myself approach', which probably doesn't help with understanding or support!

There are two ideas for helping us Men with ME connect easier, neither of which I am capable of following through with. 1. As I said before, someone could volunteer to start a Men's group.
2. Maybe existing threads could be organized into a single section to centralize things. That would make it easier to find and keep up with.

RWP

 

[RWP (Rest without Peace)]

Interesting Topic.

For me it's been about alot of the little things. I can't do anything around the house apart from some domestic chores so no DIY or gardening. When we are out if we buy anything then my wife carries it around. I have to ask her to do any lifting for me. My wife is also the main wage earner.

Our relationship has never been based on male and female roles, we don't believe in all of that stuff, but I have found it hard and I suppose embarrassing when we are out and she is doing the carrying. I also feel less able to protect my family should the need arise.

I'd like to say that I'm not so bothered about my masculinity but honestly it does make me feel less of a something. A man or a just a person I'm not 100% sure.

I hear ya, @bobp1970! I have had similar experiences. For a while right after I got mono (which followed 6 months after my wife's @PWR (Peace without Rest) contracting it, she had to mow our very small lawn. That situation then reversed and has remained so for the remainder of our 30-year illness, but that was hard on me.

Also, my mother-in-law has been our primary caregiver inside the house. She has until recently been able to run circles around me with energy and exertion.

My thought is that your identity should not be based on what you can do, but on who you are and your taking care of your wife in whatever ways you can, even if that is limited by your illness.

RWP + PWR

 

[E.man]

........... I generally just take a 'just get on with it/ keep it to myself approach', which probably doesn't help with understanding or support!

I don't go on about it but I don't hide it either. If I get to know someone a bit more I fill them in.

 

[bearVSshark]

Yeah I'm starting to be better at this. Funnily enough, that Unrest film that came out last year (not sure if you've seen it but if not I'd highly
recommend it) has been great at helping to explain my condition because I can frame it as 'there's this interesting documentary on Netflix, about a condition I actually have.'

 

[scienceshea]

Although undiagnosed I struggle with similar challenges. Any type of house work tends to take most of my energy (I still work full time and I can usually accomplish one solid home task each day). I am just turning 30 and have been married two years and we keep discussing having kids. We both want kids but I worry about my ability to keep up with a child, particularly when I have some days where I’m able to do very little and rarely can get through a whole day without some sort of break. I hate to put any more of a burden on my wife then how I already feel.

 

[bearVSshark]

Although undiagnosed I struggle with similar challenges. Any type of house work tends to take most of my energy (I still work full time and I can usually accomplish one solid home task each day). I am just turning 30 and have been married two years and we keep discussing having kids. We both want kids but I worry about my ability to keep up with a child, particularly when I have some days where I’m able to do very little and rarely can get through a whole day without some sort of break. I hate to put any more of a burden on my wife then how I already feel.

Would you say you live within your energy levels or do you fully use up what you have when you have it?

I've realised recently that I usually operate at max capacity all the time, in order to live a relatively normal life. So for instance, if I get home after a day at work and feel 'fine' I'll probably then do some house work or work on a hobby or do some more work, instead of literally doing nothing in order to save some energy. I think that's a bad habit and I know I should try to keep some energy unused but I always feel, if I feel fine I should make the most of that time. The desire to feel normal!

I imagine having children is much like that except without the ability to control any aspect of how and when you spend your spare energy!

 

[bearVSshark]

And also, I want to reduce the amount of times I get home and just crash out on the sofa as I feel it can get frustrating for my gf. So if I have extra energy and am feeling ok. I feel I should use it

 

[scienceshea]

And also, I want to reduce the amount of times I get home and just crash out on the sofa as I feel it can get frustrating for my gf. So if I have extra energy and am feeling ok. I feel I should use it

To answer your first post - I’d say this quote is mostly what drives me. There are many days where I come home and crash out on the couch getting little to nothing done. On the days where I come home and DO still have energy I will usually try and get some things done to make up for the days I don’t have it. There are also some (few) days where I come home and feel ok and don’t do much so that I can just sort of enjoy feeling ok, but really I don’t feel like I ever am able to “save energy”. Some days I come home feeling alright and do nothing, go to bed early, sleep ok and still feel worn out the next day.

My wife does her best to be understanding. She is extremely caring and thoughtful and all of this makes me realize how lucky I am to have her in my life. Of course there are days where she gets frustrated or I get over sensitive about something. It’s particularly difficult when I don’t really look sick and can have a normal conversation but feel too exhausted to really do anything. Really I’m just hoping to get a better understanding of what is wrong with me and hopefully develop a plan on how I can improve.

 

[gregh286]

Hi.
I have 2 kids 14 and 7.
Come down in 2012.
Try not to let.cfs disrupt.your plans because good days come like bad days.
On your good days you will absorb your family love like a sponge.
Thats a bit simplified but its easier to look forward with regret than look back. Because looking back sometimes its too late.
Its rough but good partner support is everything.
Tbh i think men on most part get off lightly with cfs because we seem to wax and wane more. Lots of women just get stuck without any glimmer.of relief.
Load up on glutamine and arginine and pray.

 

[Banana94]

Unfortunately I have to say at this moment I cant think about having children. I need all my energy to care for myself. Dont have only 1% energy to care about someone else. Im glad that you still can work fulltime! Do not overtake you.

 

[Rvanson]

Although undiagnosed I struggle with similar challenges. Any type of house work tends to take most of my energy (I still work full time and I can usually accomplish one solid home task each day). I am just turning 30 and have been married two years and we keep discussing having kids. We both want kids but I worry about my ability to keep up with a child, particularly when I have some days where I’m able to do very little and rarely can get through a whole day without some sort of break. I hate to put any more of a burden on my wife then how I already feel.

Most women do want to have children, which is only natural. Some men, like me, like children, but didn't want to bring any into the mess this world is in these days. Much of the worlds issues boil down to being overpopulated, sad to say.