arthur is so unpredictable!!

mistywillow

Hi all
Its so hard to plan things! Whether it is a chore that needs doing, or having friends over. One day i can even do a bit of gardening (although as i live on a farm i need to do rather more than a bit ) another day like today i can barely walk. i have also noticed that lately i am just exhausted all the time. No energy and no strength. Does anyone else have such variable symptoms :?:
Gillx

joseyanna

Hi there,

I'm feeling a bit down today as well. After dropping my 4 year old at school, I went to bed until I had to pick him up at 3. I tried to stay up but felt exhausted and sore so couldn't do anything anyway. I did a bit of gardening yesterday, not any digging, just pulling away dead leaves etc but paid for it today. We just have to live for the day and not have too many expectations on what we can do. I find it hard as if I have a good day or two I think I can go back to work but then I feel awful again. I never Know what I'm going to feel like either. Take care Jo

vonski

Hi Gill

Yep I'm the same, had to cancel loads of things. Never plan and book a holiday, night out or a meal, just not worth it. Luckily my friends now understand and we can have a laugh. Not sure about family :roll: Not hubby or son

Love
Vonski x

joanlawson

Hi Gill
I wish that little person in your animation would come and hang out my washing :!: I wish I had that amount of energy
It is so annoying when you don't know how you are going to feel from one day to another.

Last year we didn't dare to book a holiday in advance in case I wasn't up to it. We solved the problem by booking in budget hotels where you can cancel right up to the day you have booked without losing your money.In that way we managed to get away for two one-week breaks. I think we will do the same again this year.

I think you just have to accept that sometimes you have to give in and rest.

Joan

eckstardeluxe

Oh yes!

One day I can walk without pain and seem to have more energy but the next I'm so lethargic and I can't walk without limping. The worse thing is when it's been raining during the night. The minute I sit up in bed I feel it so achy and my back is like a brick wall. I ask my hubby to look out the window and he'll say "yep, been raining" I always loved the rain but now I dread it. I hate this feeling of never knowing when will be good or bad days. It's like the other post about taking a holiday, someone said no-one realises the planning we need to do even to make short trips and that's so true.
I do feel as time passes I'm starting to learn to slow down but last week in work on my lunch break someone had put a sign up asking people to do a sponsored abseil. Before my pregnancy I'd have been first in the queue, reading that was hard. People don't realise how they take having a fit and healthy body for granted. Just remember we are always here to share on the bad days xxx

livinglegend

mistywillow wrote:

Another day like today i can barely walk. i have also noticed that lately i am just exhausted all the time. No energy and no strength. Does anyone else have such variable symptoms :?:
Gillx

Know the feeling well, somedays its just only hurts more.

Joseph
8)

petmad

I agree with everything you all said. I sometimes feel good and rested when I get up in the morning. It only takes a short time before something happens to drain my energy. Its horrible. Linda

jaspercat

Hi, can certainly agree with everyone, I have good days but recently the bad days have taken over, it is hard to plan anything, you never know when you will be feeling great, the major problem I have at the moment is being unable to sleep, I am on Tramadol and Amitriptylline but still can't sleep, in the morning I am too tired to get up love Jaspercatxx

woodbon

Hi, I'm the same and I can feel awful in the morning, but better at night. Sometimes the other way round. Sometimes I can tie it down to overdoing things, sometimes not. Thats me.... :shock: Love Sue

jackie1955

Hi, I get up about 8.30, and by 10 feel like a little nap but I don't have one lol

I keep going until after lunch, when most days I have a siesta

What bugs me though is why I can get so unbelievably comfy lying on the sofa, but when I go to bed the pain in my knee just will not settle.... I toss and turn all night.

And no way am I going to sleep by myself downstairs on the sofa

Jackie x

ritnew

I can agree with everything that has been said. If I took a little of everyones post that would be me. Yesterday I had the best day ever. I felt good in myself, had hardly any pain, the sun was shining and it was lovely, I felt I could of walked to the moon and back. Today I can barely walk, my poor husband tried to have a joke with me and I bit his head off, I can't get comfy sitting, standing or laying.
I really am beginning to believe the weather has a lot to do with how I feel, so roll on the summer or my op whatever comes first. 8)

joanlawson

Hi
The problems with sleeping are very annoying, and I agree about being able to sleep on the sofa when you don't want to, and then not being able to sleep in bed when you do want to :!:

I am so restless at night that my husband has had to give in and sleep in the spare bed. After 43 years of marriage, I find this sad, but he needs his sleep.

C'est la vie :!:
Joan

mistywillow

joseyanna wrote:

Hi there,

I'm feeling a bit down today as well. After dropping my 4 year old at school, I went to bed until I had to pick him up at 3. I tried to stay up but felt exhausted and sore so couldn't do anything anyway. I did a bit of gardening yesterday, not any digging, just pulling away dead leaves etc but paid for it today. We just have to live for the day and not have too many expectations on what we can do. I find it hard as if I have a good day or two I think I can go back to work but then I feel awful again. I never Know what I'm going to feel like either. Take care Jo

Hi Jo
I can't imagine how difficult it must be having all this and having a little one to care for too!
Take care of yourself
Gillx

mistywillow

vonski wrote:

Hi Gill

Yep I'm the same, had to cancel loads of things. Never plan and book a holiday, night out or a meal, just not worth it. Luckily my friends now understand and we can have a laugh. Not sure about family :roll: Not hubby or son

Love
Vonski x

Hi Vonski
Think family have mixed feelings of wanting things to be normal again, guilt and probably real anger at arthur for messing with their lives apart from seeing their loved ones in pain. Maybe they think if they can block it, it might go away.
Take care luv Gillx

mistywillow

joanlawson wrote:

Hi Gill
I wish that little person in your animation would come and hang out my washing :!: I wish I had that amount of energy
It is so annoying when you don't know how you are going to feel from one day to another.

Last year we didn't dare to book a holiday in advance in case I wasn't up to it. We solved the problem by booking in budget hotels where you can cancel right up to the day you have booked without losing your money.In that way we managed to get away for two one-week breaks. I think we will do the same again this year.

Hi Joan
Sounds a good idea about your holiday. Can't you get anything to help you sleep? I presume you have tried all those herbal remedies?
Gill x
Ps if only we could get all those people in the animated household section we could all have a better day

I think you just have to accept that sometimes you have to give in and rest.

Joan

mistywillow

eckstardeluxe wrote:

Oh yes!

One day I can walk without pain and seem to have more energy but the next I'm so lethargic and I can't walk without limping. The worse thing is when it's been raining during the night. The minute I sit up in bed I feel it so achy and my back is like a brick wall. I ask my hubby to look out the window and he'll say "yep, been raining" I always loved the rain but now I dread it. I hate this feeling of never knowing when will be good or bad days. It's like the other post about taking a holiday, someone said no-one realises the planning we need to do even to make short trips and that's so true.
I do feel as time passes I'm starting to learn to slow down but last week in work on my lunch break someone had put a sign up asking people to do a sponsored abseil. Before my pregnancy I'd have been first in the queue, reading that was hard. People don't realise how they take having a fit and healthy body for granted. Just remember we are always here to share on the bad days xxx

Hi There
It is hard isn't it, one minute abseiling the next finding it difficult to go up and down stairs
But this site is a blessing to have found, it really helps.
Love Gill

haagan

Hi Gill
I agree with all the posts, you cannot plan anything in advance, cos arthur is bound to ruin it. I cannot remember the last time I got up feeling all was right with the world. I have't got a garden or children only cats and doing their morning chores is enough to finish me for the day. My best friend also suffers with arthur so we decide on the day if we are up to it and have a lot of coffee breaks. I sleep for Wales and still look and feel like a zombie, if only someone could invent an instant energy pill to go with all the others. Fay

mistywillow

haagan wrote:

Hi Gill
I agree with all the posts, you cannot plan anything in advance, cos arthur is bound to ruin it. I cannot remember the last time I got up feeling all was right with the world. I have't got a garden or children only cats and doing their morning chores is enough to finish me for the day. My best friend also suffers with arthur so we decide on the day if we are up to it and have a lot of coffee breaks. I sleep for Wales and still look and feel like a zombie, if only someone could invent an instant energy pill to go with all the others. Fay

Hi all
The amazing thing on this site is that you post something and read the replies and you realise that everyone totally understands how you feel. Its all about the struggle just to get on with an ordinary day whether its to do your job, get yourself dressed, feed your cats!!
My heart does go out to those of you having to meet the demands of a young family with arthur as your constant companion. I'm beginnig to build up this picture of arthur.




Good days v bad days!
Look after yourselves
Gillx

sharmaine

Hi Mistywillow
I had about 5 weeks of feeling low and very stiff and painful - I thought I would never have any good days. Just before this period of flare up I had a sickness bug which really left me feeling low for two weeks. I think that people with OA/RA get tired very quickly after any exertion or prolonged exertion. In the end I just took a few days off where I only did the basics and went to bed for a few hours. This really helped - oh and I used a heat pad on all my swollen or achy joints. I think you have to listen to your body and rest when you are feeling low. I know this isn't always easy but it pays off in the end.

I had a day last week when I felt wonderful I only had an ache and a bit of stiffness. It was wonderful I had all this energy. Try and take it easy you may be over stretching yourself.

Write a list of things that you know you can achieve. If you can't do it then ask someone to do it for you. Don't over do things. Rest in between tasks. Go to bed earlier. Relax.

Take care.

Sharmaine

mistywillow wrote:

Hi all
Its so hard to plan things! Whether it is a chore that needs doing, or having friends over. One day i can even do a bit of gardening (although as i live on a farm i need to do rather more than a bit ) another day like today i can barely walk. i have also noticed that lately i am just exhausted all the time. No energy and no strength. Does anyone else have such variable symptoms :?:
Gillx

suziev

yep it's so nice to know am not the only one,

i just had to fill in a stupid form for incap benefit which was a nightmare for any one like us how do you quantify our illness.
one day walking up the stairs is fine the next it's like climbing a mountain.

i would dearly love to just have a nap when i needed too but with 2 small children i get on with it and just enjoy the good days when they come, i just hope i have a few on my trip to london
suzie

nickynysmon08

mistywillow wrote:

Hi all
Its so hard to plan things! Whether it is a chore that needs doing, or having friends over. One day i can even do a bit of gardening (although as i live on a farm i need to do rather more than a bit ) another day like today i can barely walk. i have also noticed that lately i am just exhausted all the time. No energy and no strength. Does anyone else have such variable symptoms :?:
Gillx

reply

i am having this problem all the time now. I managed a walk yesterday, but it was only half what I would normally do. now I have to rest, am in 'fear' of my joints going again. some days it is fine, I wonder if i have been exaggerating my symptoms. I have osteo by the way, in hips and knees. then doing some gardening , starts it all off again. I am a very keen walker, but now, so much of this is in the past.

I am resting now, a bit, hoping to get more work done, or try another walk.
you can't plan things. if you rest too much the muscles are made weaker, if you work too hard, the joints ache. there seems no easy option. I would suggest pace yourself, rest an hour, before doing anything active. plan what you are doing, how long for, then sit down and let the joints mend. it is very difficult.

the good days may come but then who can say if or when? I am still looking for the balance.

hezmarie25

Hi everyone
I can totally agree with all of you. Yesterday I got up, felt a bit stiff and yukky but knew I had to go to the opticians and meet my daughter for lunch. There was a delay at the opticians so I decided to have a shuffle round the shops. Big mistake, by the time my daughter went back to work I felt awful. I did not want her to know how I felt because she would have just worried all afternoon so I put on a brave face.
Today I feel awful, I woke up when the alarm went off and just wanted to go back to sleep. I have sauntered around the house doing odd jobs but all I want to do is climb back into my bed.
I know I wont and will push and push myself till its bed time. I hate giving in and my doctor keeps telling me that I am pushing myself too hard but I refuse to let arthur take over my life, so I am now enjoying a brew and having 10 mins on the laptop. I cant sit for long periods so I keep getting up but then legs start. grrrrrrrrr it gets me so mad!!!!!
I agree also with the sofa thing. I get comfy on the sofa, watching the tv and drop off asleep but when I wake up I know about it because I have ended up all scrunched up and then I am in pain, yet when I get in bed I cant get comfy. I have even bought a new mattress but that didnt make any difference.
Life with arthur can be very very frustrating at times, sometimes I feel like screaming out loud but then my hubby might have me sectioned lol
I always remember tho try and keep smiling and try and stay positive but I have got to admit it does wear you down which then makes me moody and unbearable to live with.
Love to you all xx

ninakang

All this makes lots of sense to me. It is the unpredictability of arthritis which makes it so hard to live with.

I feel worst in the mornings when I wake up. I've never been a morning person, never in my whole life, so waking up in pain just makes me grumpier! It's hard telling people about it too because it sounds like whinging when you do it too often, don't you think? And also I find myself repeating myself a lot too, telling different people at work the same thing. I know they mean well and they're being kindhearted but I get fed up answering the same questions when I'm limping upstairs etc etc.

But it's like everyone's saying on this, we need to stay upbeat and not let it take over our lives. A big thing for me is accepting help because I've been fiercely stubborn and independent all my life and I like doing things MY way (which will always be the proper way!).

mistywillow

sharmaine wrote:

Hi Mistywillow
I had about 5 weeks of feeling low and very stiff and painful - I thought I would never have any good days. Just before this period of flare up I had a sickness bug which really left me feeling low for two weeks. I think that people with OA/RA get tired very quickly after any exertion or prolonged exertion. In the end I just took a few days off where I only did the basics and went to bed for a few hours. This really helped - oh and I used a heat pad on all my swollen or achy joints. I think you have to listen to your body and rest when you are feeling low. I know this isn't always easy but it pays off in the end.

I had a day last week when I felt wonderful I only had an ache and a bit of stiffness. It was wonderful I had all this energy. Try and take it easy you may be over stretching yourself.



Write a list of things that you know you can achieve. If you can't do it then ask someone to do it for you. Don't over do things. Rest in between tasks. Go to bed earlier. Relax.

Take care.

Sharmaine

Hi Sharmaine and all
You are quite right about sometimes giving in, Ive also just had a sickness bug for the last 2 days and had no choice but to give in. It just feels like such a waste of time and all the things that you have to do just keep mounting up so you spend your well time doing the things you have to using up any energy that you might be able to use for fun things. Bet that strikes a familiar cord with you all :!: :!:
Hope your good days continue Sharmaine and that everyone else is doing well
love Gillx

mistywillow wrote:

Hi all
Its so hard to plan things! Whether it is a chore that needs doing, or having friends over. One day i can even do a bit of gardening (although as i live on a farm i need to do rather more than a bit ) another day like today i can barely walk. i have also noticed that lately i am just exhausted all the time. No energy and no strength. Does anyone else have such variable symptoms :?:
Gillx