Fibromyalgia Action UK
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Struggling to keep up

Well, I'm sure I'm not the first person to post about this subject. But I really need to say how difficult and sad I feel trying to keep up with demands others keep placing on me. I find it so hard to do so many things. Besides fibro, I suffer from bursitis to both my hips, back issues, hypothyroid and chronic fatigue. I try to keep as much normacy as I can in my life. My husband is very kind but he has so much more energy than me. I feel bad that I can't do more. More and more, I just want to be at home and not do anything physical. I can't stand walking at all. If I have to get off my sofa it's a big deal sometimes lol! Anyway, I feel bad. I really do. He asked me tonight to go for a drive. Most nights I just cringe and go because I don't want to disappoint. But deep down, I feel like not doing anything and feel I live my life as a charade. Not because I don't love him, as I do adore him. But because I can't enjoy anything I have to do. It hurts so much.

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Hi come on girl rest up , do things you love , eat well , and press your "positivity" button - I know its hard but you have to - sounds like you have a great guy - fibromyalgia affects him too - you deserve some kind of life - don't let fibromyalgia win - I know it hurts - but mentally it hurts more to curl up and give up -

Ps I have had such a painful week but I wont let the fibromyalgia monster win - off on a two day break soon and I will get there even in a wheelchair but I will get there - take care Neese. x

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It sure is a struggle.😕

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Yes it is a struggle, and somedays you really have to fight against just staying home and being inactive. The thing is, getting out and about really can boost your spirits. You may pay for it in terms of pain and discomfort afterwards, but it makes you realise we aren't the only people dealing with issues.

I volunteered to help at a Gala Day at my bowls club, I can't bowl any more, but I enjoy meeting up with friends. Today the pain is very bad, but I had fun yesterday and saw lots of others to chat to in between helping in the kitchen.

So next time your hubby suggests a drive, smile and say" that will be lovely"! You are creating memories with him, make sure there are some happy ones too.

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Have a look at the Pain Toolkit Booklet. It's a really good resource for Pacing. It explains how to manage your time and energy around your pain. Be kind to yourself and don't live up to others expectations. There's going to be days you can't do as much. If you are going out it has to be planned so you can rest before and after so you can get the best experience. It's really hard to accept that we can't just go and do the things we used to spontaneously, but we still can do things with a bit of forward thinking. My hubby has adjusted to a new version of me and now even suggests things for a few days later and adds "if you're feeling up to it".

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I truly know where your coming from if you have chronic fatigue as well it will hit you harder your mind is sayin lovely but your body is saying no no I'm waitin on a test for cfs because I think it is that what's lays me up more the two conditions together 4half month wait so far. Your husband sounds supportive that's lovely mine has brought me coffee toast . Your feelings mirror my own you just want to say no sometimes and that should be okay sometimes listening to music or favourite tv programme together. My husband asked me to go for a short walk and dinner out last nite I said no because I think your body tells you when it's rite or wrong at that moment in time off he went bless but then I cried totally beat myself up over it made myself feel totally worse didn't sleep and paying for it now . Wish we could teach ourselves how to deal with this I'm still learning xxx

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