Trying to feel positive : I know I... - Fibromyalgia Acti...

Fibromyalgia Action UK
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Trying to feel positive


I know I sound like a Debbie downer. But I’m so fed up. I feel like I’m existing not living. With m.e and cfs, spondylitis, Reynolds disease, aswell as my fibromyalgia....I’m almost bed bound. I do wool felting as a hobby when possible. That’s it.

My social life is zero. I’m down to one friend who I hardly see. My family never really visit with problems of their own.

I try not to get down. But I really really can’t help it. I don’t like moaning to my hubby cause he has enough to deal with working and then having to deal with me.

My daughter is my carer. She’s just lovely. But I don’t like to burden her either. She has given up a lot to care for me. I feel bad enough. Without being negative. I’m just tired of saying I’m ok :( 😢x

16 Replies

Sounds like you need to get someone you can be open and forthcoming with have you tried getting you GP to set up help for you and your daughter?

YASMINTINAFMA UK Volunteer, Hi there and welcome, I’ve posted a link if you would like to lock your posts as it normally generates more privacy for you and other members. Yes I totally get what you mean and it’s okay to sometimes say I’m not okay, we try put on a brave face and it does get wearing as I’ve sometimes found. I understand you do not want to put on your daughter, but I’m guessing you look forward to hearing her come through the door each day, you say she’s a lovely girl well I’m thinking she has had a wonderful mum help to raise her. I hope coming on the forum to have a chat , read other members posts will help you. I have treated sleep apnea/cfs/Fibro as my main conditions so I truly relate to what you have said. I do miss life before the conditions got worse but I try most days to find something positive, yesterday my 2 young grand boys came, the house was filled with laughter 22mths, 4 half , they were running round with their Halloween bags/wizards hats I was the ghost under the sheet, today it’s just me and Hubble here indoors on a wet horrid day but I can see hear them laughing. Xx

we have a lot to moan about, don't feel guilty. Fatigue makes it hard to deal with anything and function the way we want to. This condition you do loose your social circle. That why I'm glad of this site because I know other people with the condition face similar situations and so you don't feel so alone.

miss_boo in reply to bobbybobb

Thank you so much for replying. In a selfish way...I’m kind of glad it not just me going through the mill. I wish none of us had too.

But yes. I’ve set this up to my phone now. So I’m going to be on here more often.

Thank you again. And hope your as well as can be x

This is a safe place to come and vent how you feel, you are not alone xx

miss_boo in reply to Lou1054

Thank you. It’s good to know.

This illness can be a super lonely place 💕

Call social services as a self referral

You will get help u need to go forward

miss_boo in reply to Simbistaffy

I’m going to have to do something. I didn’t even think social services would help. I will try and get the wheels turning next week. Thanks for replying 💕

Thinking of you your not alone in this xx

miss_boo in reply to uggycat

Thank you. And thank you for replying xx

I know what you mean. I get feeling the same way. This time a year the depression gets worse as the days get shorter. My place of volunteer went to the waist side under new management. She chased off a lot of the staff. It is sad. I miss everyone that was there. I know that lonely feeling. So many of us know it all to well. Hugs 🤗

miss_boo in reply to Sarahvit

That’s really sad. I used to have a big circle of friends when I could work.

Your right. This illness can be so flippin lonely. It has so many different sides of the illness we have to deal with.

Hope your ok. Well as can be. Thank you for replying x

Sarahvit in reply to miss_boo

Thank you miss_boo, yes I use to have friends when I worked and was in the ministry. People just don’t understand when you are suffering from this illness. You are right it can be very lonely.

The hardest part is the fibro fog and frustration related to it making it hard to think 🤔 communicate with others. Can’t remember things and pull up words very frustrating. I’m sorry just having a bad day from yesterday’s llllooonngg day. My son had an accident with his car. He is fine car axel not so much. Long story short he has a rental and waiting for the auto insurance adjuster to come out and appraise the damage after that need to wait for the insurance payment.

You are welcome. I try to reply to people’s posts when I see there isn’t a lot of reply’s or I feel strongly in helping the person that I can offer help. People post on the pip process for example I don’t know anything on that. Sorry for babbling.

I feel the same way most of the time. You are certainly not alone. xxoo

Think + thoughts I'm having a go with bb guns skirmish sits near poole Dorset. Be a good social life then able to have a all black bb guns yes I'm mad and love it

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