Family don'tunderstand

[Clare24]

I'm sorry but I'm having a bad time now. I haven't been on this site for ages but I'm having problems with my family. I don't have Fibro but my partner has. I just had a meltdown talking to my kids who had to take my mother-in-law out today and couldn't come round to pick up stuff for my lovely mother-in-law in case they caught covid before they went on holidays. One reply I got was the fact that my partner (Steve) couldn't be bothered to go to see her and neither could my son, who is autistic but not diqgnosed, but obvious. I can't stop crying now. I just would like some positive feedback please.

[Hazel_Angelstar Administrator FMA UK Staff]

Hi Clare, sorry that family are not being more understanding. There is a small section in our patient booklet for family to read, but there is also a few article that you can google - letters to normal etc that can help to explain what it is like

[honeybug]

Hi Clare 🤝🤗🌿🌸🦋

I’m sorry sweetie that you are enduring this…how alone you must feel at the moment.

Been through this myself for decades it was a horrific time so I truly understand…and I’m the one with severe fibro.

Family refused to believe it because I could push through things and looked normal outside.

This is ON them sweetie NOT you. Dry your tears 😭 feel my cyber hug 🤗 and the love I’m sending your way. Get a cuppa and some biscuits watch a feel good movie or listen to calming music.

When you get a chance explain to lovely mother in law what happened with the stuff you were going to send to her before her departure. This way she’ll know just how it all didn’t get to her before her trip.

I’m across the pond and struggling to do replies but I felt your pain and just had to reach out to you hun.

Never let yourself get overwhelmed again without reaching out to this site in the future. We all need someone’s shoulder to lean on in trying times.

Remember you are a kind caring loving person with compassion. You deserve the same in return.

I send you my love and support and I just said a special prayer for you sweetie.

Take care stay safe much love.

EvaJo aka EJ.

🤝🤗♥️🥰🙏🕊🌿🌸🦋 in

I’m

[Hidden in reply to honeybug]

"Family refused to believe it because I could push through things and looked normal outside."

Sick of having to explain my condition because people don't necessarily see it all the time. I feel your pain and do many others imagine xx

[Gigiruth]

Hi Clare24Sorry to hear things are so hard or you right now. You seem to be trying to be so much for so many people. You are giving of your best and that is all we can do. None of us can change the behaviour of others. As said maybe information to family will help them understand. They may not. Would they respond if you ask for help?

You know you have done all you can so try to be gentle with yourself. It's usually not possible to keep everyone happy. You know you do all you can.

Are there other people or professionals that can help you find a way forward. Could you to someone about your son? I wonder if you get any time for yourself.

Look after you

Take care

Gigi

[onebigvoice]

There is only one way to put this and its, because (some) people don't understand what its like and that because you have been their rock the attitude is just get on with it? Outward signs are not always visible and in my case always being active, there excuse not to help, or one of them as there is loads is its old age and we all have aches and pains? and they always find something for me to do knowing I can't get to the floor purposely put thing out of reach. Even doing up shoe laces can cause pain and a head rush and loss of balance. Sorry there is no quick fix to this but you need to talk to everyone and explain, that you would like a day off from what you do and the pain once in a while.

[sexto]

Hi Claire. Sorry you are having a bad time. I have been in the same situation as you. I sought help through my GP who put through to a counsellor. This did help me. My family still don’t understand but I am still having counselling. I hope this helps.

[Blearyeyed]

You seem to have been coping incredibly well in very difficult family circumstances so you should give yourself a pat on the back for that.

The effect of caring for so many people's different family health needs is that you will suffer from negative stress , and its impact on your Mental Health , and having the odd meltdown when your family have not learnt about Fibro or aren't being more considerate is totally understanding.

I would suggest that you take the opportunity to get as much rest as you can and enjoy quiet time with your partner while the more active part of the family are on holiday.

During that time , it would be a good idea to download and print off any pamphlets explaining Fibro to use when the family get back home. Work out some simple honest sentences about how Fibro effects people's ability to do things or plan things and how much it can impact on your Life and the life of your partner.

I always say that Honesty , with ourselves and others , is the first step in taking back control of your " New Normal" with any Chronic condition like Fibro.

Getting people over for a friendly chat , over dinner or drinks with young children occupied elsewhere is best.

Once you are relaxed and general chit chat has stopped just jump in with the fact you need to talk to them about Fibro and you hope that you can rely on for help and support ( in your head you are hoping at the least to reduce their lack of understanding and criticism but don't voice that) ,this is key to making your life easier as a Fibro sufferer or carer.

Your partner should be there but it is possibly going to be less stressful for them if you do the talking and just discuss with them what you are going to say first so that your partner doesn't contradict you because they haven't quite accepted how Fibro has changed your lives either.

Make the explanation of Fibro and your need for support as honest but positive and simple as possible. The aim is to help them to understand without them beginning to oppose what they are hearing because they start to feel guilty for not helping you before.

You explain the general symptoms like pain , fatigue , spasms, dizziness , migraine and mobility problems. Then explain because of Fibro and its effect on all different parts of the body your partner's condition can go up and down from one day to the next.

This means that sometimes you will both need to cancel or change plans last minute , that there are some very active or longer days out that your partner can't take part in as before and that often you might need to ask for their help doing jobs or helping with your autistic son that you didn't need help with before.

They also need to understand that your partner isn't doing things like he used to with them, or for them , because he doesn't want to , he'd love to do what he did before , his health won't let him , so if you have to go to some things without him , including family events , you hope they will remember that it's only because he can't do it and is having a bad day.

Also explain that helping your partner and understanding their need for a slower pace of life helps you deal with the Stress of caring for a number of people with health needs and will stop you getting run down or ill in the future.

Most of the time , with family or friends , these simple explanations do get a successful and positive response. Even if some of them still aren't understanding there is usually one that is whom jumps to your defense and prevents you being criticized by the others .

If you have the pamphlets to give them to read up on things that helps too. If you find trying to do this in a face to face chat us too hard then you can choose to email them what you need them to know with links to articles on Fibro on the email.

Your autistic son may even understand more than you would think , especially if you can find some more relaxed activities that you , your partner , and your son can do together that don't add to the Fibro pain and Fatigue.

Don't be shy about asking for other family members to help out too , and be willing to say " No" when completely healthy family or friends are asking you to do chores or jobs that they are more than capable of doing themselves , or could ask someone else to help them with.

You have probably always been there all of the time to do everything for them when they asked.

They need to understand and take time to adjust , just like you did, to the fact that they may need to be the helper in the future instead of the people being helped.

Friends will quite often step up to the plate and help you out with jobs and fetching things more often than your children no matter how nice your kids are.

You need to be able to prioritize which jobs or social activities you need to do or want to do , and not do the things you feel you should be doing or have to do. This will help your partner to have a more consistent quality of life and will give you less stress.

You also need to make time for yourself each day even if it's just 15 minutes doing something that helps you relax or that you love or you will burn out and that won't be good for anyone.

It can feel wrong at first to stop running around after your adult kids or being the perfect all doing parent and many of us feel guilty or feel like we are failing at first but we shouldn't. We all deserve medals for doing as well as we are in hard circumstances and we show our strength and intelligence by being willing to recognise the need to change , to ask for help and to look after ourselves more. When we adapt to the changes in our priorities and getting a more balanced daily life both Fibro sufferers and carers feel much happier and healthier. I know you can do it too.

Take care , Bee

[fmlife]

Those closest to us can be cruel with out realising, you have your plate full,

there was a spoon theory and not in my shoes which can help, although some folks cannot understand.

it is difficult, sometimes you just have to choose to not listen.

there is a life is short poster that put into context for me,

virtual gentle hugs

[Clare24 in reply to fmlife]

Thanks so much for all of your wonderful replies. I'm sorry I didn't reply until now but I just had to switch off yesterday. The pamphlets are a good idea, I'll try that. I did email them both and had a good rant - perhaps over the top, but I mentioned the fact that Steve woke me up one night a couple of years ago to say he wasn't in pain. I tried to stay up as long as I could with him but had to go to work the next day. We both cried for hours and he hasn't had a moment without pain since. Anyway, the good news is, my daughter emailed me back yesterday to apologise and we have made up and put it behind us. I have yet to hear from my son. Spoke to my other son about the argument and he was very supportive and level-headed about it. I think his autism seems somehow to let him see things from a different perspective. By the way, some of you have made me out to be some sort of angel - I'm not!