trekster228 years ago

hello and welcome, can you get an occupational therapist assess your home to see if improvements can be made so life is more bearable for you?

Lisa2014 in reply to trekster228 years ago

Hi, thanks for your message.

I never thought of that, how do you go about that? Through the GP?

I had help through my health visitor, she recommended home start, and they have been a great help with the children, but it is a long week looking after the children by my self, when I'm Struggling to look after my self some days.

My husband is great when he gets home from work, but coz I'm not well and can't work he works 6 day weeks, so only have his help one day a week.

I sure when my children get older and go to school things will get easier I hope.

If I could afford someone to help with the kids I would, I was hoping I would get my pip so some of that money could help but I only scored a 4 so Didn't get it.

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trekster22 in reply to Lisa20148 years ago

The way in which we describe our disabilities is what determines whether we get benefits or not. If you want to appeal try benefitsandwork.co.uk they produce guides on how to apply for disability benefits and how to describe your disabilities.

Occupational therapists visit your home and are avaliable via most social services departments.

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BlueMermaid38 years ago

Hello Lisa

Welcome to our lovely forum

I do understand your struggle to cope. I've had Fibro, CFS, depression and a multitude of other illnesses for over 30 years.

Whilst working full time, I had 2 children to look after as well. They are 15 and 18 now.

I wish I could tell you that it does get better, but it would be unfair to lie to you.

I managed to struggle on, and worked for 34 years, but due to a major trauma a couple of years ago I have been unable to work.

Like you I'm struggling to keep afloat, financially and emotionally.

The key to Fibro is to pace yourself. Sadly I have never been able to do this.

I'm so sorry this post is not more positive, but you will find lots of tips and hints from the lovely supportive people on this forum. I just wanted to say hello.

I look forward to seeing you around

Take it easy (if you can)

Hugs Lu xx

Lisa2014 in reply to BlueMermaid38 years ago

Oh thank you so much for that message, I know it's a Struggle, and deep down I know it won't get that much easier. I am not very good at pacing either. How can you be with 2 kids, they don't let you rest for long do they.

Yes everyone on here seem very nice, just nice to talk to people who understand for a change.

Many thanks

X

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BlueMermaid3 in reply to Lisa20148 years ago

Hi again

I just re-read my message to you. I'm so sorry. It wasn't very encouraging was it??

I currently have pneumonia on top of everything else and am feeling extremely poorly and very low.

I hope you enjoy the forum as much as I do.

Hugs Lu xx

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Lakikette8 years ago

Hi lisa, welcome to this wonderful community. I just joined yesterday and I can tell you that people here are just amazing. This last twenty-four hours I kept receiving support messages from everyone and that literally made me feel better. The pain and tiredness might still be here but at least you'll know that there are people who not only know how you feel but also give you support and most importantly, listen to you. Personally, it helps me feel less guilty and marginalized and I could never thank them enough. So Welcome again!!!

Lisa2014 in reply to Lakikette8 years ago

Hi, thanks for you message. I see what you mean, I've just had a few messages in the last 2 hours, and everyone is lovely. Feeling more positive already.

Thank you

X

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Hidden8 years ago

Hi Lisa,

It always amazes me how the people on the forum cope with small kids. As you say it is very difficult to pace with toddlers. Unfortunately my kids have grown up and I didn't have fibro when they were small.

I am sure you will get plenty of relevant advice from the others who are coping with fibro and kids.

I really want to welcome you to the forum and hope you find it as interesting and as much fun as I do.

Hope to see you around

Lisa2014 in reply to Hidden8 years ago

Hi thanks you, what a lovely bunch you all are.

X

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TheAuthor8 years ago

Hi

Welcome to the forum and I sincerely hope that you find it useful, informative and loads of fun! It is wonderful to make your acquaintance and I genuinely hope that you can find some resolution and relief to your problems.

I can see that you have been given some wonderful advice so I will just wish you all the best of luck.

All my hopes and dreams for you

Ken

nettybetty8 years ago

hi. you poor girl every day must be struggle and you must have to push yourself.i truly hope you have help partner/mother etc, xxx

0118sara8 years ago

Hi Lisa, I like ur self have struggled with young children so I know what ur feeling, I had my first spinal surgery when my children were 8,7 and 1 my youngest is now nearly 10 and I separated from my husband of 18yrs 4 yrs ago because he said I had changed so much, put on weight, unable to do everything I used to do, I wasn't the women he married! Not very nice and has been a hard slog but u will get through it, teach ur children now to help is all I can advise, mine are all girls and are 17,14 and 9 and because of my health probs and then separating from their dad, moving house etc etc I felt guilty so have pushed myself beyond my limits too many times to mention because I felt that I had let them all down and everything was my fault because of illness, it's not our fault, and they need to be taught from a young age to help u, It won't hurt them and will make them grow into nicer people.

My girls do nothing to help which is so hard as I feel that they don't care, but it's my fault for letting them get away with it, so now I have such a huge daily battle to just get someone to unload the dishwasher.

I try to talk to them saying if they help I have more time when feeling slightly able to spend with them.

Just set them small tasks, and don't EVER feel guilty for being unable to do something.

Really hope u get some help soon

Xxxx

Lisa2014 in reply to 0118sara8 years ago

Hi thank you so much for your post, and advise.

So sorry to hear about your struggles also.

Hope things are a bit better for you now?

Your kids are older now and more independent, but I bet the stress and worry still has a affect on your health?

Many thanks

Lisa x

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Mdaisy8 years ago

Hello Lisa2014,

Welcome to the community! It sounds like from your post you have been diagnosed with secondary Fibro possibly due to your arthritis. It is considered that a combined approach may be the best way to managing Fibro symptoms and here is a link about medications & complementary therapies.

Here's a link to a FAQ here on the community with links to the website;

healthunlocked.com/fibroact...

Having primary Fibro myself I would imagine like when I get a cold or virus that when your arthritis are worse this impacts on your Fibro symptoms which can sometimes mean finding the right treatments for you for both conditions may be more complex. We have found here in the community that what works for one does not always work for another so it can be trial & error.

What was interesting from your post is you also mention your current treatments help and then don't seem to! I wondered apart from the above where another condition affects the other, whether you are in a Push & Crash or Boom & Bust cycle maybe?

Here's a link about it;

healthunlocked.com/fibroact...

We've all been there and sometimes still do push ourselves more on a certain day, to enjoy a special occasion maybe as sometimes you may need this as a pick up.

However, it is considered better to try to pace yourself and do the same amount each day which builds upon exercise tolerance too. This may of course not relate to you but if it does you may find pacing may help, it takes time and can be frustrating but eventually the ups & downs may not be so up & down

This post about Flares may also be of interest;

healthunlocked.com/fibroact...

Hope this helps

Best Wishes

Emma

Lisa2014 in reply to Mdaisy8 years ago

Hi Emma

Thanks for your message, and for all the very helpful links.

I understand what you mean, really need to start pacing myself better, I do over do things when I'm feeling better.

Medication wise, I mean it dose help me, but dose make me drowsy, which make the fatigue worse.

I have tried meny, some really doesn't agree with me, what I'm on now is fine, just think I really need help to except that I can't do what I used to and I really need to pace.

Will keep trying to be good.

Many thanks

Lisa x

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Mdaisy in reply to Lisa20148 years ago

Hello Lisa2014,

You're welcome, hope the information helps

I know pacing can be difficult & take time and even after years sometimes you need that day when you feel better do go out & push yourself as it can sometimes be a psychological boost that you need at the time! But, yes in everyday life it is considered best to pace and in the long run you should eventually see you can do a little more each day.

Like I say 'we've all been there' ! so it's not an unusual cycle to get in.

Hoping you are enjoying the sunshine and taking it easy

Best Wishes

Emma

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magnetta8 years ago

Hi Lisa, welcome

Firstly - well done for posting, I know it can be nerve-racking but everyone is really lovely on here.

For me it seems like trial and error. Here are a few things to think about if you want to:

- Trying out different doctors to find one that knows about fibro felt like a mission but I have found a good one now.

- If you feel depressed then please do talk to your GP, antidepressants come in all shapes and sizes and they might find the right one for you. Talking therapy is fantastic. I would definitely recommend it.

- You are not lazy.

- Talk to your friends and family in a calm and factorial way. Don't moan about it to start with, help them understand what it's like. Then when you do need to moan they will understand and want to help.

- You could try acupuncture or other alternative therapies.

- Read about the Spoons theory. It's quite useful for pacing yourself.

- When you are sore and tired maybe you could do something arty with the kids? Then you can supervise from the sofa. But not messy! Pencils don't cause too much mess do they?? (I don't have kids).

- You didn't choose your conditions so please don't feel guilty for your family. Everyone is different and has different capabilities. Our are just less obvious than others!

Sorry I ranted on a bit more than I planned but I hope something might be of use to you. Take care. Look after yourself xx

Lisa2014 in reply to magnetta8 years ago

Thank you for you post and advice, it is much appreciated.

Really need to pace better, that's half of my problem.

Many thanks

Lisa x

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magnetta in reply to Lisa20148 years ago

Pacing is so hard because we don't get much indication at the time that we are overdoing it... then the next day it causes a flair up!xx

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Mdaisy in reply to magnetta8 years ago

I know I often say to the OH it changes 'it's goal posts' seems to get it then as Football mad!

It seems to be dependent on other things again isn't it whether you have a bug/cold/virus, any deficiencies, how other conditions are behaving or not behaving impacting on Fibro symptoms!

Keep strong & all any of us can do is try our best

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