How can I improve the quality of my life

[pastapesto]

I have cfs/fibro, I feel unwell most days. I work three days a week, I feel very unwell those days. I feel my life is work/recover from work. Everything I do costs me. Of course I don’t look sick and I find it lonely living like this, people quickly forget and I don’t want to go on about it all the time so I tend to mask a lot. 2 kids, dh working full time. Feel I don’t have much to look forward to, just more trying to manage. Mood is increasingly low, already on anti depressants. I don’t want to give up hope that things can be better though. What would you do? I get access to work but don’t qualify for PIP.

Bumping because I’m the same and would love some ideas. I work very part time and the rest of my life is spent sat on the sofa, it’s been 8 years. I also don’t qualify for pip, but if I didn’t work at all I wouldn’t be so unwell. It’s an awful existence.

Can you look at ways to take some of the load off by outsourcing? Cleaning, ironing, online food shopping.
Do certain diets improve your symptoms? My friend has had great success with the AIP diet, it’s restrictive but it has definitely lessoned her symptoms.

The right magnesium supplement should help with any brain fog.

I have literally just been sitting here thinking the same thing! I even contemplated starting a thread so thank you for this! Unfortunately I can’t be any help but it is nice to know there are others that feel like this. I have tried everything to manage the symptoms diet, supplements, massage, physio, chiropractor, yoga, meditation, medication, acupuncture but i always feel the same. Utterly overwhelmed in pain and embarrassed! My PIP claim was also rejected, I try not to dwell on it but those days when it feels like torture to sit through a meeting or even cook tea can leave you feeling totally despondent! I completely understand and I’m sorry you have to deal with it too!

Oh god, the meetings!! So sore. Yeah it’s just a grim thought isn’t it. I think if I didn’t work I would have some decent days. The Transport in and out has helped a lot of you haven’t applied for that it’s worth looking into.

Absolutely, I’m at the point where I can’t sit for more than an hour without being in so much pain later on! I’ve changed my job once but it’s just the same problem in a different place and with less empathetic colleagues! I’ll look at that, thank you. My DH and DD are amazing but I feel like I let everyone down doing the bare minimum on days like these! I did get a massage gun just recently and it’s not a miracle cure but it takes the edge off if that’s helpful!

It’s hard to keep mood up. All a bit of a slog at times. I do like my job (mostly!) so that helps but it can be frustrating to just about cope with that and then feel I have nothing for myself. And I get scared sometimes, when things are bad, that I might not manage to keep going. It’s so lonely as no one really gets it.

Completely relate, I have some lovely people in my life who really try to understand but unless you are dealing with it I don’t think you can. I’m on anti depressants too but it’s the constant pain and fatigue that get me so down, there’s no break from it! is your GP helpful?

He is kind. But also just said this is your life now. Which I suppose it is. Except I also have to pretend it isn’t!

Are there any hobbies that would give you a break so art or reading perhaps?

edited to add mil can’t leave house so her and sil are in a carers association group (Ireland) and they have online painting classes and book groups

Hey OP.. I know someone who has fibromyalgia. They even despise a shower because they said it feels like they've ran a marathon after it. I get the general impression that if everything didn't hurt so much they'd be fine to a point. They increased magnesium. Went on a higher protein intake. Ditched red wine. Go out in nature as much as they could. Gave themselves permission to feel the way they do and like someone said earlier outsourced some house work. It helped them massively feel a bit better. Free'd time up to reconnect with their kids and hubby. Also recommended acupuncture and regular osteopath appts with massage too

I don’t drink at all already. My body can’t take it. I’ve not thought about acupuncture, I’ll give that a go thanks.

i love reading but most of my down time is spent in recovery from work. I’m hoping I’ll get to do some when I take a holiday though.