How do you manage?

Aggie

New member
Joined
Jan 13, 2021
Messages
2
Reason
DX FIBRO
Diagnosis
04/2000
Country
UK
Hi everyone,
I've just joined your forum and wanted to ask how you manage your days. I'm thinking about housework, appointments, gardening etc. I find that my days are quite short because I sleep late in the morning, because I have difficulty getting and staying asleep and then have to go to bed early either though pain or tiredness.
When I have a better day I tend to do all the things I want to do and then suffer the next day. I will not give in to fibro and just wondered how other people cope.
Thanks for reading and look forward to any and all replies.
Stay safe.
 

jwnini

New member
Joined
Jan 14, 2021
Messages
3
Reason
DX FIBRO
Diagnosis
6/2007
Country
US
State
TX
Personally I have found the best way is take one day at a time. Don't beat yourself up if you can't do much that day or sleep in because it just means your body really needs it.

It also helps to pay attention to your bodies warnings because you can pretty much plan around it. Take in consideration the following:

WEATHER (it's not just about the temperature, but the ups and downs in temperature from one day to the next) I live in Texas so it's usually just hot but Fall and Winter are the worst because one day is will get down in the 20/30's and the next day will be 60/70's. Even if the weather is a roller coaster ride I'm just down period. Let your body rest and don't push it. Keep warm at all costs because once our muscles tighten they don't like to release.

PAIN MANAGEMENT (Don't let the pain keep increasing) As soon as I notice myself shifting more and trying to get comfortable it's a big sign that means pain is coming on. When you start to feel that pain catch it so it doesn't get increase pass your limit. I'm not sure if you're the type of person like my grandmother and uncle (who also have fibro) that when they take a pain pill and they feel better they feel like they can push on and pay for it later. Pain pills are to help you get through the pain, if you're in pain that means it's just making it to where you don't feel it as much, that doesn't mean you can handle activity as if nothing is wrong.

ACCEPTANCE. It's become a part of me, and I haven't let it beat me but sometimes I'm down for the count and I have to accept it and just get through that day and that day only. Don't push yourself past a point where you end of paying for it it because everytime you do that your going to push your body into a frenzy and trigger a flair which can last a few days to a week. So it's not worth spending that one day going all out when you send yourself down for double that time. It may take you longer to complete projects but at least you will get them done and they will be enjoyable. You may not want to accept this but I've personally dealt with this invisible illness for over 13 going on 14 years now and these are just things you have to accept. Your body is not going to respond the same as others, you will have triggers, the better you can adapt to all these the easier it makes it on you. By giving your body the needed rest, the extra time, not pushing your body past it's limits IS the way to beat it. It's beats you when you push past that. I was only around 11 when I got diagnosed and have never been able to work so trust me, I get it, and it stinks, but it's something that you have to constantly battle. I look completely normal on the outside, even though I'm about to turn 25 people think I'm 16 or 18 so it's even harder to find help or doctors/nurses who take me seriously and that I have a real illness. It doesn't define me, but it has become a part of me, it's made me stronger knowing I have this but still keep going. The real skill is coping. You have a great attitude, and I respect that. Just keep learning yourself and your limits, every human has them.

SURROUNDINGS. Find all your comforts. Find that place you can curl up and sit/lay comfortably for hours. Invest into mattress that helps you. Keep your temperature stable in your house/room and make sure it never too cold or too warm. Check your lights and make sure they are not too bright ( I personally have all my lights hooked up to a remote that I can turn several off or all off so I don't have to get up if I suddenly get sleepy)

You will eventually find things that work for you. Know your Fibromyalgia, all the triggers that make it worse for you and go from there. Fibromyalgia being something that involves the muscles will create a lot of pains that usually point back to itself, have a good muscle relaxer helps. I take Tizanidine and it helps to take it with a pain killer from your doctor. Stretching helps but don't feel bad if you can't always, especially on weak days. Just do what you can without overexerting yourself, I cannot stress this enough. I hope it helps somewhat. I once said I am so weak and have a low pain tolerance but my mom reminded me it's actually a very high pain tolerance since most people would be crying if they had to endure what we do everyday. That made me feel better and I realized she was right. It may slow us down, but it never stops us.
 

jwnini

New member
Joined
Jan 14, 2021
Messages
3
Reason
DX FIBRO
Diagnosis
6/2007
Country
US
State
TX
Personally I have found the best way is take one day at a time. Don't beat yourself up if you can't do much that day or sleep in because it just means your body really needs it.

It also helps to pay attention to your bodies warnings because you can pretty much plan around it. Take in consideration the following:

WEATHER (it's not just about the temperature, but the ups and downs in temperature from one day to the next) I live in Texas so it's usually just hot but Fall and Winter are the worst because one day is will get down in the 20/30's and the next day will be 60/70's. Even if the weather is a roller coaster ride I'm just down period. Let your body rest and don't push it. Keep warm at all costs because once our muscles tighten they don't like to release.

PAIN MANAGEMENT (Don't let the pain keep increasing) As soon as I notice myself shifting more and trying to get comfortable it's a big sign that means pain is coming on. When you start to feel that pain catch it so it doesn't get increase pass your limit. I'm not sure if you're the type of person like my grandmother and uncle (who also have fibro) that when they take a pain pill and they feel better they feel like they can push on and pay for it later. Pain pills are to help you get through the pain, if you're in pain that means it's just making it to where you don't feel it as much, that doesn't mean you can handle activity as if nothing is wrong.

ACCEPTANCE. It's become a part of me, and I haven't let it beat me but sometimes I'm down for the count and I have to accept it and just get through that day and that day only. Don't push yourself past a point where you end of paying for it it because everytime you do that your going to push your body into a frenzy and trigger a flair which can last a few days to a week. So it's not worth spending that one day going all out when you send yourself down for double that time. It may take you longer to complete projects but at least you will get them done and they will be enjoyable. You may not want to accept this but I've personally dealt with this invisible illness for over 13 going on 14 years now and these are just things you have to accept. Your body is not going to respond the same as others, you will have triggers, the better you can adapt to all these the easier it makes it on you. By giving your body the needed rest, the extra time, not pushing your body past it's limits IS the way to beat it. It's beats you when you push past that. I was only around 11 when I got diagnosed and have never been able to work so trust me, I get it, and it stinks, but it's something that you have to constantly battle. I look completely normal on the outside, even though I'm about to turn 25 people think I'm 16 or 18 so it's even harder to find help or doctors/nurses who take me seriously and that I have a real illness. It doesn't define me, but it has become a part of me, it's made me stronger knowing I have this but still keep going. The real skill is coping. You have a great attitude, and I respect that. Just keep learning yourself and your limits, every human has them.

SURROUNDINGS. Find all your comforts. Find that place you can curl up and sit/lay comfortably for hours. Invest into mattress that helps you. Keep your temperature stable in your house/room and make sure it never too cold or too warm. Check your lights and make sure they are not too bright ( I personally have all my lights hooked up to a remote that I can turn several off or all off so I don't have to get up if I suddenly get sleepy)

You will eventually find things that work for you. Know your Fibromyalgia, all the triggers that make it worse for you and go from there. Fibromyalgia being something that involves the muscles will create a lot of pains that usually point back to itself, have a good muscle relaxer helps. I take Tizanidine and it helps to take it with a pain killer from your doctor. Stretching helps but don't feel bad if you can't always, especially on weak days. Just do what you can without overexerting yourself, I cannot stress this enough. I hope it helps somewhat. I once said I am so weak and have a low pain tolerance but my mom reminded me it's actually a very high pain tolerance since most people would be crying if they had to endure what we do everyday. That made me feel better and I realized she was right. It may slow us down, but it never stops us.
I forgot this too.

WELL DESERVED BREAKS. After a taxing day whether it's from working hard to stressful appointments allow yourself a breather. If I've done something that's required strength and is hard on me I generally rest the next day to allow my body to heal, recharge and relax. By not doing so your body starts to get more and more tense, and even if you haven't done something physical stress, anxiety and emotional issues will often trigger a flair the next day. So make sure to take that time to rest properly so your body can keep going, otherwise you'll just be down for a long period and other things pile up. As the saying goes, slow and steady wins the race and that couldn't be any more appropriate for our Fibro.
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
979
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Jwini.....that is good advice and I agree whole heartedly with most of it. Good for you!

Aggie --- I have made a post of suggestions on how to manage FM, and it is pinned at the top of this forum. Read it and try some things.

Jwini says some of the same things, and one of the most important is the part about acceptance. If you can reach a place of acceptance you actually will have more energy because so much of your energy will be freed up when you are not using it to worry, be frustrated, or be hard on yourself. I know it's a cliche, but really "it is what it is". Today is what today is. And you gotta accept that.

Acceptance doesn't mean complacency or approval. It just means you are not fighting it, and are instead taking good care of yourself.

I pace myself. I love to work hard physically, but I know that if I over do it I will suffer needlessly. I will work hard physically one day, then either do less the next day or not work at all and do easier things instead, even if my body feels fine that day, because I know my body needs rest. I stop what I am doing instantly if I feel even one twinge in my back, rather than ignoring the pain and continuing stubbornly the way I used to. Some days even if I planned an activity my body says no in the morning and I listen to that, rather than doing it anyway the way I used to. And my days go much better because of this. It's never worth it to do more than your body can take and then pay the price later.

I know exactly what you mean about not giving in to FM! I feel the same way, and I don't give in to it either! But........pacing yourself and listening to what your body needs and taking good care of yourself is not giving in to FM, it is simply being sensible and dealing with your body as it is on any given day in a way that doesn't cause harm.

Best of luck to you .....we are all here to support each other.
 

Aggie

New member
Joined
Jan 13, 2021
Messages
2
Reason
DX FIBRO
Diagnosis
04/2000
Country
UK
Thank you to you all for the suggestions and advice. I think I need to accept my fibro as part of me and try to change accordingly. I just don't want to become a slave to it and that's why I push myself, so much so that fibre takes over and won't let me do anything. I do get fed up with the occasional raised eyes or frowns from my husband when I can't manage a dog walk or to help with some chores. I know it's hard on h im, but at least he has a choice as to what he does. He is lucky to have good health and I know I hold him back from being able to do things together.
Anyway, Thank you so much for the reply and I look forward to spending more time on here.
stay safe.
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
979
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Aggie, you are welcome. Good point you made there: if you push yourself, that's when fibro takes over your life and is in control, which is exactly what you don't want! Good way to look at it, and I am going to remember that.

It's hard with a partner, hard for both of you. My best advice on that is simply to keep communication channels wide open about it. Let him have his frustrations, which are normal, and at the same time let him know that his support is vital to your well being. Maybe even have a regularly scheduled talk about how it is going, say, once a month.
Mind you, if all you get is occasional raised eyes, you are lucky compared to most people and how their partners are :)
 

Little Debbie

New member
Joined
Oct 6, 2020
Messages
6
Reason
DX FIBRO
Diagnosis
05/2019
Country
US
State
GA
Thank you everyone on this thread!! Great advice from you all. I am trying so hard to get to that acceptance point with psychologist (she understands & has chronic pain from horrible army injury) chiro, trial & error with meds and activity level. The brain fog/mental capacity is so frustrating. My psych therapist is teaching me ways to live with pain & be happy/at peace with distraction & being good/nice to myself. And hopefully one day cutting down on meds. I overdid it today & paying for it now. But ice packs, heating pad, distraction, meds, 🍷wine and hopefully I’ll sleep tonight. You have to do what works for you at the moment through trial & error unfortunately. And steer clear of people who are overbearing and give advice with phrases like “you should or you need to.” I’m still learning. Laughter helps. Love & hugs to fellow fibro friends.
 

Forgetmenot

Extremely helpful member
Joined
Oct 6, 2014
Messages
1,386
Reason
DX FIBRO
Diagnosis
70/2010
Country
UK
State
Hertfordshire
Hi,it’s hard to add to all the great comments.and we all do the .....get everything done when I feel good.And many of us will always do that.but think of it.housework is a NEVER ENDING story .wash rinse repeat.
So I breach my day up .morning I start slow.I don’t lay in as it makes me hurt a lot.I will put a wash on.and iron.then it’s cuppa time with breakfast.that might last an hour.Then Hoover .make beds. Break time again.another 30 minutes.Then say the bathroom.then that’s it no more.
I try and shop for a few days at a time so I don’t have to go everyday.I then save up my energy for cooking dinner.
Do I hurt like a b .yes .but I hurt all the time anyway .do I have days where I don’t no much and have take out at night .YES.
Do I feel guilty .YES. Can I change it NO.
Have the sense to know what you can do.
And except the things you can’t.
When you can except this life can be a little easier.🥰
 
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