Living with ME/CFS - as a partner.

[Rainfern]

I wonder if it's OK to join you on this forum? My husband has had ME for around 8 years and probably like many here often lacks the energy to participate socially. ME is part of my life, in how I have adapted my own life to meet my husband's and my own needs. But I've only recently experienced a huge slowing up of my own energy due not to ME but a heart condition. So that impacts on him and I can see how that's an extra load for him. I'm really looking for ideas and help on how we might adapt to this new situation. We're both retired and his ME tends to be aggravated more by mental processing than light physical activity (eg computer, reading, travel, sensory stimulation, social interaction).I understand if you want to keep the forum ME sufferer only.

[Calliepet]

I think you would be most welcome. I have ME/CFS but also provide support for my daughter who 's ME/CFS is slightly worse than mine, so I see the illness from both points of view and know how hard supporting someone can be.

[Iesgobdafydd]

I'm in a similar position to you Rainfern, in that it's my daughter who has the CFS diagnosis although I also suffer from persistent fatigue due to another chronic health condition; nobody's objected to my presence in the group. I think the more people there are in the group the better, as long as they're genuinely interested - anyone who can share relevant experience (their own or someone else's) or has found useful sources of information to share is surely an asset to the group.

[PortiaRose123]

Hi IndyRaza, I was interested to read your reply. Is there anything you could share with us?

[doglover1973]

Hi Rainfern Welcome 🙂 I've got ME but I'm happy to hear other viewpoints too. It helps me stand in my helpers shoes and appreciate what they do for me. Essentially both you and your husband need to take it steady. Perhaps you could talk it thru with him. There are allowances you can apply for if you need help. Please feel free to ask as many questions as you like.

[Rainfern in reply to doglover1973]

Thank you doglover for your response. I'm very uncomfortable when people claim to have the cure for ME so appreciate your kind and measured words. My daughter with MS has had people come at her with a "cure" and far from raising her hopes leaves her feeling like the MS is somehow her fault for not giving in to the pressure to take up countless unproven treatments.

I do think there is a huge amount we can do to improve quality of life. Removing ignorance is one, especially with family and friends who so often put pressure on us for instance by confusing brain fog with their idea of being a bit tired! Another is to recognise that living with adversity does not preclude happiness. And to know that everyone's condition, experience and needs are a bit different from one another.

[doglover1973 in reply to Rainfern]

Hi Rainfern I know how your daughter feels. Even members of my own family have asked me to try things I'd rather not try. It's kindly meant but not very helpful. It's so true what you say that living with adversity doesn't preclude happiness. We just need to look at things in different ways; to find pleasure in small things. Hope you have a good day 🙂

[Rainfern in reply to doglover1973]

😊 Presumably with the help of dogs - or in my case a cat! 🐶🐈

[doglover1973]

Please don't raise people's hopes in this way. It's not sensible. There is no cure for CFS/ME. I don't mean this unkindly. Just practically.

[doglover1973]

I'm all for hope. It's what's sustained me for many years. If you have something positive to share please share it by all means.

[doglover1973]

Please don't PM me again. Tell your story on the forum if you wish.

[Rainfern]

Hi Indy I'm glad for you that you have found a way forward. Please don't try to push this on people by offering private messaging as this makes people feel uncomfortable. If you care, share.

[Rainfern]

Thank you Indy. I have heard of this gut link before and interestingly my husband is making an appointment with a dietitian, recommended by another ME sufferer, in a few weeks time. Maybe you could give your story in short installments? I find with people's stories on these forums I get to know people gradually.