Need soe help please

[Ellie1991]

Hi I hope eveyone is doing well. I am sorry for another question. However, my mum in perticular is very barating and patronising over this,its all im my head and just get over it and move on its not rely. I fell on monday over a metal fire pit and have now got a brused sholder. Her responce was guess you have somthing else to winge over and. I then said she did know this was setting my fibro off and probs was not going to be a good week. well here we are Friday, went to a funeral yesterday put on a brave face and today have been on the floor three times cry and almost screaming in pain. Called mum as we live and work on sight. Came over layed into me what do u want me to do about it, get over your self. I have a fab 7 month old pup who is amazing and loved and looked after like a baby almost, she had to let it out so unless i start looking after the dog she will take her. I should also say this is the first time she have been called for my fibro pain and let the dog out. at 7 months she is fully trained and alredy doing some quite advanced training happerly. Im sorry for ranting but some times just feel like i am not heard and glad i have a dog who loves me and i love.

[Blearyeyed]

That's awful. The way you Mother is treating you certainly won't help reduce your feelings of stress which we all know adds to the symptoms of Fibro.

To be frank , you did a lot this week after having a fall , you put up with the negative verbal ear bashing from your Mother and still attended a funeral.

There seems to be little point trying to get through to your Mother about how her dismissive and , sorry to say cruel , attitude actually adds to the possibility of your Fibro getting worse.

I am appalled that she suggested that she would take your dog away just because she had to help you out. That dog is your support dog , both emotionally and physically and caring for it and receiving love from it will improve how well you cope with Fibro.

Are you able to get any other local help or support from other friends or family members who are more understanding ?

Have you looked up any local Fibro or Chronic Pain groups that you could join for meetings online or face to face?

Have you any medication to help reduce the pain ?

Did you see or speak to the GP about your shoulder injury , they may be able to offer you some more treatment or advice.

Sounds like you live close to your Mum , do you also work with her?

Whatever the situation , please keep coming on the forum with any questions for tips and an understanding ear , if you need to talk it sounds as though you may be better speaking with us or others as your mother may actually be adding to your feelings of low mood and probably hitting your confidence.

Remember , you have a chronic condition that can cause disability, the fact that you keep trying even after literally falling down shows just how strong you are . Take care , Bee

[Ellie1991 in reply to Blearyeyed]

Thank you. The res cross is trying to help but there is limited group support in my area. mentaly i am grate full for my strength build from ironman triathlon over the years. I do kinda have to laugh though as a few weeks ago I cant remeber the lecture but I did day to mum you do know you havent said one thing posative in so she said my hair was nice lol. It pains me to say but she has her own issues. but dose love me.

[Blearyeyed in reply to Ellie1991]

I completely understand , I had a Mother much like that , but you have to eventually accept that you need to protect yourself from the negativity even if you know they love you and you them . I hope you find some help soon.Have you tried looking up Facebook groups on the charity website , there may even be groups in your area not just for Fibro but for Chronic Pain.

I hope you have some people that you feel you can talk to , Bee

[selltile]

Get a copy of Gabor Mate's book=What the body knows. Take your time reading it and think about how you want to repond to your Mum.

Your library will probably have it.

[Cat00 in reply to selltile]

Love that book.

[Ellie1991 in reply to selltile]

Thank u Ill try it

[Ellie1991 in reply to Ellie1991]

Just bought it thank u

[Sparklingsunshine]

Have to say I'm speechless about how you're mum is treating you, is this new behaviour or has she always been like this? Do you have any other family, like your dad or siblings? I'm a mum with two kids just a bit younger than you and I couldn't imagine being so heartless and uncaring. Maybe print out some information about what Fibro is, how its very real and disabling and get her to read it. Sending hugs to you.

[Ellie1991 in reply to Sparklingsunshine]

aloth of them cant understand so choose to take the aprotch that its an excuse. Dad is the best as he has a fusion cage holding his spine together but still skies and dose alsorts of it is a bit get on with it but with a bit more understanding on pain.

[Sparklingsunshine in reply to Ellie1991]

It is an issue for those with invisible disabilities. We look ok on the outside so people assume we're great on the inside. Unless we are obviously disabled, ie missing a limb, in a wheelchair or using a white cane then we're clearly malingering and just need to try harder.

It comes from ignorance, lack of empathy and I believe fear. Fear that they too might get struck down by a chronic, hard to treat illness, so much easier and more comfortable to pretend it doesnt exist.

[Onedaymore1]

aww it’s an awful situation. Unfortunately, my Mum is the same or was the same, now she just ignores the odd comment about having a bad week/all week/weekend in bed trying to cope and sleep through the pain. She never sees me like this. If she rings and I don’t pick up or call her back she has a rant! And none of my other family are the same. I’m fortunate to have a quite understanding partner but, there are many times he’s not happy about having to do the lions share of the more physical housework/garden/cooking & not being able to go on holiday/make plans. Either way no one really understands this stupid chronic illness unless they suffer from it. How much support are you getting from GP/Specialists? That’s the only thing in your life that you have to push and push for answers. I recently took to writing down my symptoms, a typical day, worst day, as good as it gets day. Also,including asking for additional investigations/alternative medication to try. I then post it to the surgery & ask them add it to my records & to review my records/the new information & to call me to book a double appointment. Putting it in writing is key as it’s all documented in full & not shortened to a few GP summary notes. My GP said it was very helpful for her to be able to look at it before she saw me. You have to push & push for answers. Try to see same GP if possible. That helps. Take care & try to park your MUM in a part of your mind that you lock away and don’t dwell on/worry over. She probably won’t change. 🥰

[Ellie1991 in reply to Onedaymore1]

THe red cross have give me some paper work so im gona give that to them see what happens and mught have a confrontation with the red cross here.

[Ellie1991 in reply to Onedaymore1]

I am sorry ur having a similar experience. I have to lol as she then says well whats stressing you.

[Al10]

Some people just can't do sympathy. Other's go overboard and smother. Either way, its unlikely to be what we want. It sounds like you are not getting what you feel you need and that's hard to take.

Can I say this really gently, life can be properly sucky for lots of us. We feel misunderstood, and horribly judged for failing. And it's not fair! Fibro is a mountain to climb before you even try to get on with your day. Someone telling us to get a grip, when that is all we want, feels properly mean, when likely what they intend is to say, is you have to learn to manage your fibro better because if you don't, you will lose that ever so precious independance most of us value more than anything.

Threatening to take your dog, may be Mother saying, if you can't manage yourself, you need to think about if you can manage to care for another life as well. And you want to don't you? Having a pet is wonderful. So take the hint and accept you have some Fibro work to do. You are too young to let fibro keep winning. And remember, you don't want to forever have to look at Miss Puffy Face in the mirror. As you get older, those puffy red eyes, don't miraculously disappear. They take Bloomin ages to go. When you hit that certain age and fibro is still making you cry, it is a great motivater for figuring out your coping.

Can you look at what areas of your life you can improve? Pacing your energy better? Sleeping better? Relaxing? Learning to go with the flow? Meditation, diet, exercise etc. Is there a support group? Maybe ask your GP for suggestions?

I don't want to say you should be swallowing more meds but getting advice how to get through your days on a more even keel. Mother is going to be Mother probably, no matter how much you argue and try to teach her to be better, so you options come down to how can you manage her lack of empathy and not let it upset you.

If she were colour blind you wouldn't berate her for not being able to differentiate colours and making mistakes. Probably you would learn to laugh about the silly things she would do. As annoying as it is, if you can't move away, then accepting people's mental foibles is essential. Also, if you move out, you will encounter others just like Mother who will upset you and hurt your feelings. So, figuring how to cope with how she is, will stand you in good stead for all the others you may meet who can't do empathy.

One of the things fibro has taught me, (not before it nearly drove me crazy!!) is to try to accept what is. To go with the flow. I don't always manage it but I do know, when I can stay calmer and I don't get upset, I feel better. The more wound up I get, the more fibro flares. I'm not saying Fibro is in your head, just you can't waste precious energy stressing, else you have nothing in the tank for dealing with Fibro.

I bet Mother has some great qualities, and you do to. It's about looking at these and focusing less on the other stuff. I believe everyone in our lives teaches us something. We can learn it quick, or if we fight it we can take a lifetime meeting the same sort of people over and over.

I hope this helps. I had to hear this so many times before it clicked. It felt too much like a kick up my sensitive bee-hind. Just know, however beat you feel, you are stronger than you know. Even with fibro you can live a good life if you take the time to figure how.

[Ellie1991 in reply to Al10]

Thats a rely good point, I know she loves me and normally it dosent bother me that much. Being overly hormonal at the moment dosent help, somthing i need to deal with myself. It just feels like every thing i do is never going to be good enough and now I have the joifull friend that is fibro in life, like i have been winded. I will be good

[Wobblygirl in reply to Al10]

I think you've tried to put yr point across very carefully and with true understanding. I do hope we can all take some very positive notes from yr piece?Fibro is difficult to live with but remembering how hard this is for our carers, friends and family too means we have to become more independent and diplomatic...

I try and deliberately send messages of positivity to folk who hv commented how good it is2hear abt my positive progress... and only reply when I am 'in a good place!' Obviously, that means there are some lengthy gaps...

Eventually I apologise for my absence but always mention my ailments as an excuse. I'm going to have to really try+resist those details, as not everyone wants to hear abt my woes, every time...

It's a tricky route, to manoeuvre through...

Making sure I look aftr myself with sleep/exercise/nutrition/ pacing etc is my responsibility to live better!

Doesn't always run smoothly as winter temperatures, stress and individual events can really rock you sidewards...

My Covid vaccination has triggered a bad spell but I deliberately booked a few empty wks following it with some opportunities to do some home based activities. Needless to say, the mending hasn't bn done+the sofa lolling has become an art form!?!

I still have an awful lot to learn about living with my fibro symptoms and to acknowledge that I can move forward and take care of others in my world...

Thank you Al10 for providing another building block for my journey. I appreciate how important your points are for Ellie1991 and myself

Wxx

[Al10]

Ah yes those pesky hormones. They can make everything sooo bad! And your Fibro too, sadly. I expect you are doing just fine. It takes time to adjust and figure what your body and mind needs to manage your fibro and it is something you have to do for yourself. Everyone is different as to their combination of things that help them.

[Ellie1991 in reply to Al10]

going from doing 11 sports to almost 0 is hard on all of us but time is a good healer

[Wobblygirl]

I trust you are feeling more empowered with so many thoughtful interventions here?Take very good care of yrself and I hope today is a better day...

Wxx

[Sarahvit]

Hi Ellie, I’m sorry that your mum is so insensitive to your health conditions. One day she will understand. As they say what goes around comes around or karma will come to her. I say if she doesn’t understand in this life she will in the next life. My heart goes out to you. This is a very hard frustrating thing to live with. 🤗💕🦋🌺💜