Fibro cfs and the “joys” of life - Fibromyalgia Acti...

Fibromyalgia Action UK

57,022 members65,155 posts

Fibro cfs and the “joys” of life

Jl1986 profile image
20 Replies

Can any long term suffers of fibro and cfs tell me if you ever find yourself ? By this meaning I don’t have a clue where my life’s going anymore I just feel lost and like a bum that can’t provide anymore . This time of year hits home especially as I’d love nothing more than to treat my 6 kids my partner my mother and father to something nice , realistically I haven’t a pot to pee in because I’m in capable of working anymore .

Going off point abit does this crap sorry about the language ever get any easier , any better ? do you ever get used to just existing and not being able to flourish or make good memory’s with your family because tbh I can’t see a light at the end of this tunnel

Moneys not everything but when you struggle to even fuel your car enough to get about your daily buisness ….

20 Replies
ClassyLady3 profile image

I know other members will post quickly, But I wanted to answer your question. Yes, given some time, a person can come to the point where they realize that relationships with other people are the most valuable things. Other people care about you as you care about them. People who love you will be glad that you’re here and will enjoy your sense of humor and what you give to them as an individual person. There will be less focus on things overtime and more focus on relationships in my opinion. I also lost everything such as finances, Travel etc. and have learned to just rest and enjoy the People that I know and the simple things such as birds and flowers and art and music which I never had time for when I was healthy and live a full life in my occupation. So please be encouraged and remember that on very difficult days for people here will reach out and be there for you. 💕There is a saying that “time heals all wounds” but I think also that time does help us heal when our health deteriorates and we have to adjust.

Jl1986 profile image
Jl1986 in reply to ClassyLady3

I feel along way from being able to come to terms with this , I’m 35 yrs old I have 6 young children and this horrible illness which is stopping me from allowing them to live a full life , I will never be able to fund any of my daughters weddings I will never be able to fund university for any of them I will never get to take them away on holidays the list is endless of things I can no longer do , I feel inadequate as father because this illness make me inadequate. I don’t think I will ever get through this it breaks me daily 😢

ClassyLady3 profile image
ClassyLady3 in reply to Jl1986

I am so very 😢 sorry. It is quite an upheaval in all of your lives. It can feel completely overwhelming, especially in the beginning where you are. Please receive my support now and know that others are here with you in this (even those who have not yet responded). I will keep you and your family in my prayers.

Hazel_Angelstar profile image

There's no answer to this one.... Yes - some people will have full and happy lives, despite having fibromyalgia and accept any limitations it puts on them

No - some people will be so limited by their symptoms that they are unable to find any purpose in their lives

Maybe - some people will heave times when they are able to move their lives, but also times where they struggle to accept the way their life is

Personally - I would put myself in the yes camp (although there are times in past I've been a no and a maybe too)

I'm fortunate to have found a combination of medication and pain management techniques that allow me to function on a daily basis with pain at a manageable level.

I am able to work part time, spend time with family and friends and enjoy hobbies and interests.

However, often this comes at the price of increased symptoms, having to plan on rest days, missing out on one thing so I can do another. But I would say that in general, I can find joy in my life most of the time xxx

yorkielover46 profile image

I have had Fibro since 1996, had to stop work and get disability. I still have pain every day. I have flare ups that put in bed for up to a week.. I do have a few "good days" and overdue, and then it starts again. I am happy for the people who get remission from it, as I have not. My life revolves around. CfS and Fibro. Hope you are one that gets relief.

Jl1986 profile image

💔😢 it’s not even the pain fatigue the constant moods and anxiety it’s the life I can no longer provide for my self partner or children that really breaks my heart if I was a selfish man I’d be long cremated but I can’t do that to my children but then I’ve always got the constant thought of can I put my nearest and dearest through decades of this , you’ve done 16 years more than me so you must have some drive , I’m loosing the will at the minute I don’t have a clue where I’m heading in life

trip77 profile image
trip77 in reply to Jl1986


Ye seem similar to how I feel and have felt in the past. I too have not been able to work as the chronic fatigue and the flare ups have literally put me on my back for days at a time. I posted on here not so long ago about how I was concerned for my partner and how it affects my relationship and not being able to provide for my kids etc as well. It really really can get ye down and I have gone through similar emotions and train of thought as yourself.

I am grateful that a lot of people on here gave me their support and time to help me through the rough days, and to be honest, it has helped me to think of things i could do and how to manage my 'Free time' that I have now.

One thing ye vould do is to use the time ye have from not going to work to learn a new skill online and gain qualifications in other areas.

I am currently in the process of applying to do business administration and computer programming courses through a colleges online learning programme, both of which I have always wanted to do and never had the time or money, and as I am now on universal credit and disability payments I dont have to pay a penny for.

A lot of employers are now offering work from home/ do in yer own time jobs, which in our situations can be ideal as ye don't always want to leave the house or even get up out of bed.

Use the time ye have off from not being able to work to yer advantage as well. I love that I now have the time, obviously when I am able to, to have the house tidy and the dinner ready for the kids coming home from college and my partner home from work. I have more time for making stronger bonds with my partner and kids as I missed out on a lot due to working 50+ hours a week. I am not saying ye need to do this yerself, but try to come up with something specific to yerself and yer family, and ye will find that just even thinking of ideas can give ye a bit of pleasure and make ye feel happier and pass time too.

These are some of the things that have helped me to feel and cope better on a daily basis, and despite not being able to provide for them, have given me the opportunity to find new ways to help provide for them in the future, or at least to contribute to the family as best as I can.

I understand how you must feel and how it all seems like doom and gloom at the minute, but there are ways to get through this and feel better about everything.i hope this reply will help ye to consider other options and to help ye to look at things from a different perspective.

If there is anything ye wanna talk about or I can be of assistance with, hit me up on here n we can have a chat.

I hope this helps

Yassytina profile image
YassytinaFMA UK Volunteer

Morning, I just want to reach out and give you an hug it saddens me when I read young people struggling with these conditions, I have both fibro/Cfs so I totally understand how it must get you down.For me it was frustration that really got me as I resented why me and felt I was just living day to day with no cause. My turning point was being put on the right medication after trial and error then gradually building myself up day to day, pacing is differently key as pushing too hard dosent help but with 6 children must be really hard, what ages are they? I really hope they give mum a cuddle and tell her how much they love her on a daily basis, we just need that support it makes it worthwhile getting out of bed every day to a house full of chatty and laughter . I miss that now there’s only 2 of us, my little grandboys are my saving grace when they come in from school some days full of stories from their day at primary school, just seeing them smile melts my heart.xx

Spidy profile image

I feel so sad and helpless, reading what you have written. I've been trying to think what I could add that might help but it's a struggle. Please do try to enjoy your family. They love you as much as you love them. And don't be hard on yourself about the things you can no longer do in the future. We can't help it.

It's so tough to come to terms with.

You are not alone.

Sarahvit profile image

I know exactly where you are coming from. Been there felt that almost 30yrs now. I wish I could say yes it gets better but but in this life for me it hasn’t gotten better. It sucks I know but we need to keep the faith that one day things will improve. It just has too. Life will as long as we keep the faith. Please don’t ever loose hope. Hope is what keeps us alive and going. Please keep the faith. He gives us the strength to do what we can. Get involved with a local fibromyalgia support group. Get involved in any Reseach studies to help get us 1 step closer to a cure. I know this is hard I feel the same way as a looser and failure in life but will do my best to fight and do what I need to do to win this fight. Never give up. Remember greater is He that is in us then he that is in this world.

JayCeon profile image

Lots of good suggestions here already....I'll try to bind the threads to your deepest desire to give/provide and to find yourself as well:

We feel incomplete if we can't provide, esp. in our traditional roles as men. But "even" as men ;-) we can (learn to) give love, deep relationship, quality time instead of quantity of time & money & things. In 10 or 20 years none in our family, young or old, will wish or be proud that we had given them more things, they will wish or be deeply glad we had given them love. They will be glad & proud that we did this with all the inner "strength" we have left, however much that is, in the face of our deep ailments. These will be the good memories, this is the light we make in our tunnel. I didn't need my dad to fuel his blimmin car, I (would have) needed him to talk more to me about people, the world, God or not, pain, himself, me, to show me how to give and take instead of just providing for me, how to be happy, to enjoy life in spite of dire financial or health straits....

And we - whether good Christian souls or ethical atheists - always think we need to give give give.... That's not true. Firstly, we are to love our neighbours as ourselves. We are to give to the needy, which in this case is us ourselves, this is a condition where we need to learn to self-care first and foremost - to live, to enjoy life, to progress by working on our bodies & minds.

So if we are sorrowful that we can't give, but not able to allow ourselves to take, we are not giving to the needy. And our kids are learning that from us - "Cat's in the Cradle... We'll get together then..."

Secondly, we need to learn to take - with love. If no one learns to take and be thankful and show this, then all giving is nought. It needs both sides, not to complete the picture, but to have a picture at all.

Thirdly, real taking is giving. Opening our eyes to our surroundings, looking into the eyes of the other person bonds us, feeling them in our hearts, feeling what they are and give us, and telling them so. Have we told each of our loved ones we love them today? Have we told them what's so good and lovable about them? Have we thanked them for all this they are "giving" us just by being there? We have "given (real) life" to our kids (whether own or not), family and everyone by doing this. This isn't "just existing", it is putting The Life and The Love into this existence.

So to go supposedly off point with you: No. This crap does not necessarily / usually get easier, better by itself. No, we don't get used to it without trying. We can suffer on and on, make life and our condition a misery for ourselves and everyone around us. That only gets easier and better if we open our eyes and change our outlook. This can become our new life, new self and can be a better one than our old one, which drifted or sped past.

Which incidentally may have lead us to getting here in the first place.

"We" includes me, of course, in all points...

Acocoa profile image
Acocoa in reply to JayCeon

JayCeon! What a good write up of life. Thank you for this gentle reminder 💜. God loves those who love themselves. Until you accept your condition and life changes, then we Shall be free from ourselves and be able to help, love and care for others.

Sending hugs and love to you all my brothers and sisters ❤

AlteredWorld profile image

Hiya, yep to all the above... BUT the more we fight against this condition, the harder it gets - especially as many of us have the condition brought about by extreme stress/trauma - so emotions can make a huge difference for some of us, in the way we cope and move onwards and upwards.

I think of it as an opportunity to change priorities, an opportunity to be able to take time out and see what is important to the people around us as well as ourselves. As others have mentioned, money and earning money is not the big priority once life throws a curveball.

Having a chronic condition means our priorities change - and what we want to do changes. So it can be a good idea to take the free online career tests out there, for what jobs would suit you best, move forward and leave the past behind by finding the new you, using your new empathic skills and understanding nature - empaths are required in many jobs.

Retraining is a good way forward, we may do it slower cos of the brain fog and the limbs that won't co-operate as normal, but, there is more than hope to be found. You can find you. The new You. Trust in your new understanding of the world.

With six children, you have a lot of opportunity to help them grow and learn, to feel loved, to know you care about them, not what money you can bring to the table, but what YOU can bring. Having gained yourself a chronic condition, you have more understanding, more empathy, more consideration to everyone around you, it just comes naturally - and you have that in buckets shown by how much you worry about your inner circle.

Don't give up, lots of little people are depending on you, you are needed. You do have value - it's just a different value than you are used to - especially as a man in a world where you are meant to be the financial provider - you are still the provider and you can be the provider you want to be again - find your niche and you will find the feeling of worth you think you don't have. Accept that being a provider is not about money at this point in time, this will give you time to re-group, find you, re-train and grow.

Yep, it takes time - me, 21 years but don't lose sight of who you are, your value to those around you and what you really can do. Not saying it's not shite, not saying we don't cry about it every now and again. But a few years ago I just cried all the time. I tried not to 'be' on a regular basis. I did not accept and I did not cope.

There is hope. I hope you are able to find your way through the quagmire. You sound like a much needed person in the lives of everyone you know. Don't give up. Find the new you. I really hope I don't come across as patronising - I just want to share with you that the change we can make is still down to us, it's better to be in pain and doing something positive than be in pain and thats all there is.

Don't give in, new opportunites await. Trust us, I don't think I'm the only one saying this. I feel for you, I hated this too. Keep on keeping on. Find the new you.

it's a meme saying I got ills but I still got skills
JayCeon profile image

I agree fully with AlteredWorld that whilst we may sometimes think of ourselves as fibro warriors, it is a "radical acceptance" which reaps more success to get happier.

A pain psychologist in a clinic once said I could think of it has an unpleasant relative I have to carry around. Talking to other fibromites about this I thoroughly disagree that this image is helpful for me and most I know.

I think of FM more as my body teaching me to self-care, telling me what it desperately needs. I am still a warrior in that I am continuing to live life to the fullest (no longer defined by lots of activity or providing) despite it, not because I am fighting AGAINST it. I am "fighting" for my body, so it doesn't need to complain as much, putting energy in, defending it against stress & other triggers. (Thanks for the ideas, @AlteredWorld.)

AlteredWorld profile image
AlteredWorld in reply to JayCeon

you explained that perfectly!

Jl1986 profile image
Jl1986 in reply to JayCeon

How do i defend against stress though when that’s all life seems to threw my way 😢 and this being my biggest trigger the end of 21 and the start of 22 have been one of the hardest times I’ve had to deal with in a long time and I feel depleted completely depleted

JayCeon profile image
JayCeon in reply to Jl1986

😮- so sorry it's been so tough!

The many times in my life where it got really stressful, I had to admit that I won't manage this alone, and/but forums etc. can only go so far. I always got help thru psychotherapists (not necessarily psychologists, but definitely not psychiatrists) - they gave me ideas, guided me how to implement them. BTW: The lower I got, the 'worse' they could be, cos any support was better than none. If they didn't understand certain parts of my life I didn't talk with them about it, but concentrated on things they were good at. They usually are at least good in something. Some I had to explain things first. And some sessions are hard, painful work, because we have to smash down some seemingly unsurmountable barriers in ourselves, then there are occasional dead-ends, but it was always worth it in the end/long run.3 psychologists I consulted last year were not too good at pain stuff, but I know in another situation they could have helped me with stress, getting clarity when everything is getting too much and I can only see blackness, with finding myself, with learning when and how to say No etc.. Now I have one (I'd tried long before) who is good in both, in relationship stuff, everything.

Have you got anywhere you can look for support?

Jl1986 profile image

I’m sorry for the short reply thanks Bertone for your advice and for all those mention money means nothing when you live 36 miles away from 4 of your kids it dose matter I do need the fuel to even see my kids I don’t need a fat bank balance to live a happy life but I need to be able to sustain relationships with my kids or I’m screwed pointless in being alive

Acocoa profile image

Sorry you are feeling low and incomplete 😔. As a professional care giver, I will advise you that contact with your children shouldn't be face to face to feel fulfilled. Indirect contact/family time could be face time such as WhatsApp video, free 45 minutes zoom call, Skype, Microsoft teams etc. Letter box..the old way of communication. Children most times need to know you are there by showing love, care, interested in their needs such as what their day has been, friendships, expressing your love for them, no promises because once not respected they ceased to trust you.

Please speak to your doctor for a referral for counselling or talking therapy or medication for depression( not saying by any way you have it). Wish you all the best


NPR1 profile image

Hello my dear, sorry for the late reply. yes and no is my answer to you, its really hard to offer words of encouragement when all your looking for is to get better, been there, still there some days. The first thing you have to do is accept your new self which is hard and depressing so when i finally gave in after being sent home from work two years ago i accepted it, i grieved for maybe a year and to be honest i was quite lost and have been since being diagnosed in 2010. its hard on your family but if your anything like me its harder on you to let go of things which you used to do and thats not just riding a bike or anything strenuous, its also looking after the bills, walking, housework, making meals, trying to keep your eyes open to see your kids to bed before you fall into bed yourself, not being able to get a cuddle as it hurts so much, not seeing your friends, not being able to pay the bills. I was diagnosed early 30's which was extremely hard for me with a young child. I lived in denial for 10 years, beat myself up all the time if i couldn't go to the park or swimming or even just kicking the footy about. The main thing which helped me was mental health training, after accepting my illness of course but the reason it helped was because i used to get so upset about it all for so long i started getting really angry with the world and everyone in it and yes that did include my family. It helped when i opened up to them but it doesnt help you not feel pathetic only you can stop that feeling by being kind to yourself. I use CBD patches or drops they have a great affect on depression and anxiety and pain only problem is knowing which one to buy as there are so many on the market. Other things i use are epsom salt baths, arnica gel for all my muscles, its amazing, hot baths, limit walking, housework and lifting anything bigger that a milk carton, reduce sugar and crap, try and eat clean, find your triggers one of mine was the wi-fi and my mobile or laptop so switching wi-fi off when im not using it has a huge difference to my pain, rather than waking up like ive been hit by a bus most days when it was on 24/7 i only put it on when im using it, once a month if that so once i sorted that the only pain i have is when i do it to myself by overdoing it physically which could be as little as doing the dishes some days and not using my mobile as a phone due to severe migraines, So by accepting it being aware of what im doing to my body weather it be what im eating or my environment which is affecting me then i do get some restbite and you do find yourself even if its a different version. The reason i say yes and no is because if your heads in a good place you can manage it better and by slowing down you will try new things which you never thought of before as hobbies but sometimes it does get the better of you so for me on these days, weeks or even months i try to be kind to myself, ask for help and try not to feel guilty if i have to go to bed at 6pm. Take care XXX

You may also like...