The slippery slope: So who opened her big mouth too... - NRAS

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The slippery slope

28 Replies

So who opened her big mouth too soon then? Moi. That's who.

Riding high on a wave of euphoria, I had convinced myself I was on the way back up from a long trip down. I told you didn;t I?

So what's changed? Errrr..... have no idea...

My pecker is down, my positivity as become negative, euphoria has become neurotic and I have lost the will to go on.... well it's not quite that bad, but bad enough.

I bloomin' well give up. It's the fatigue mostly, just tired, no motivation again, and sit dreaming the day away. Time is just slipping by so quickly each day and I haven't done anything.

I have had a couple of days when I wanted to get up and at it. but it got up and went!!! I became so tired, irritable and miserable.

Just when you think you have scored a goal, some so-and-so has moved the flippity goal posts...

But, and it's a very big but... it will not beat me... ..... ..... whatever it is!

See ya later peeps and take care

Julie x

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28 Replies
Sharon56 profile image
Sharon56

Ah Julie I love your blogs cause they make me smile. Sorry you are so fatigued. I am cream crackered but i think its my fault cause I have been sleeping in Mums room (when will it stop being her room). Anyway I digress sorry Julie talking about myself again lol. Just go with the flow and be kind to yourself things will soon improve I am sure. Take care p.s have you any spare matchsticks for your peepers.

in reply toSharon56

Hi Sharon, and I'm glad I make you smile. It's ok, talking about yourself helps you and others, because we can see we are not alone. I am trying to go with the flow... and am floating down the swanny... I am looking for matchsticks which are up to the job, they don't make anything like they used to!

Juliex

emandedmum profile image
emandedmum

Oh no, sorry to hear you're feeling a bit down Julie. It's nothing you've said or done, it's just your body telling you it's having trouble at the mo. I'm yawning my head off today because my neighbours left for their hols at 3am this morning (so not jealous) and woke me up...hmmm....No children here today so I'll be mostly doing....nothing! Chin up lovely xx

in reply toemandedmum

Thanks Jo, you have a rest too, while you can. x

Hi Julie, don't let it beat you but don't fight it either as you won't win!! and that's from someone who's fought and lost.

You will get days like this, whether you have overdone things or not only you no the answer to that one so be true to yourself and ask have I?

You must learn to look after yourself more, lust like you do those little chickens! You may not have been overdoing things if that's the case well the answer is still the same have a rest!

Take care Julie hopefully you will feel better in a few days, its what RA is all about I'm afraid.

Luv mand xx

in reply to

Hi Mand, it is such a fine line isn't and it has to be experienced to appreciate it.

It all takes time I suppose

Thanks, Julie x

cathie profile image
cathie

Oh dear. Do you think the return of the rain and humidity might have affected your inflammation? It really is best to try to pace yourself, but thats not easy - I know how my best intentions crumble as soon as my daughter needs help with grandson!

in reply tocathie

Hi Cathie, the funny thing is, my RA is really not very active at the moment. It's just the tiredness. It is so tempting isn't to try and carry on doing what you are used to doing, especially when you know the family needs help

Julie x

just have lots of rest... going for an afternoon kip after this and poppping a few more pills lol x

in reply to

Thanks Alison, good idea!

x

Don't fight it Julie, I find if you go with the flow is passes more quickly. Getting stressed aout it is sure to bring it on.

All very easy to say but not so easy to do I know

Hope you feel brighter soon, keep your pecker up

Sue x

in reply to

Thanks Sue, trying me best..

Juliex

Gina_K profile image
Gina_K

Hi Julie, Sorry you are feeling so tired & down at moment. Try just go with the flow and do what your body tells you. I find I have most energy in morning and around now it goes low, hence sitting with lap top for an hour. I have had what you have and totally empathise with you, but know that it won't last and tomorrow will be better. Hugs to you today. x Gina.

in reply toGina_K

Thanks Gina.

I does so help when you hear someone say they have felt the same way as you. Gina, you should blog more and tell us, because I am dead nosy and want to know! Thanks for the hugs and you take care too

Julie x

cathie profile image
cathie

The others are right. I'm just back from an hour and a half helping out my daughter with a sick child. Sometimes you just have to struggle with what you can manage to do, I'd really like to do more and have a huge pile of washing waiting to be ironed, but it'll have to wait til I've had a snooze!

I still think that list making and prioritising things helps. Just sorting out tasks a bit might help you feel that even if this is a bad period, you have achieved something and things are under control. And maybe when we can we should all try to get some sunshine to cheer us up!

in reply tocathie

Yes the old list. I had started that you see and then when you feel a bit better you stop. You just can't can you, you have to realise that this is what you have to do. Thanks Cathie

Tricia-P profile image
Tricia-P

hi Julie

I too have the fatigay as well not so much pain but stiffness; so I really do knoow how you feel, there is a wonnderful helpful info sheet by NRAS on Fatigue and LynW has also posted on this subject. My rheumy nurse who i saw today said don't fight it embrase it and it will be easier i asked her what she meant and it's simples rest when you can conserve energy use every adaption helping article, I have an oak old perching stool in the kitchen matches the unts bought from recycle centre £5.

that saves me so much standing. The power snooze 1 hour about 11am then 3pm maybe 1.5 hours. Try it please and don't be guilty as the time you use in napping can be given back to our loved ones 3 fold as we then have the energy to ask them how they are and how was there day.

Gentle hugs love Tricia xx

in reply toTricia-P

Hi Tricia, I have the info sheet and will do my best... I suppose part of it is the fact that I have felt I have gone backwards and I don't want to!!!!

Hope you had a good time on Saturday.

Thanks for the hugs, Julie xx

yep snoosie or snoozies .. help

Tiasteph profile image
Tiasteph

Hi Julie,

sorry to hear that hun but...it's early days. You will feel like this, it's totally normal & totally okay! It's a huge thing to deal with.

However being a positive person, you'll turn this around I'm sure :)

We all know exactly how you feel, I'm twelve years in & still get days like that. Then you pick yourself up & think stuff it (using a far ruder term lol) & carry on.

Plus it takes time to get to a place where you know & except your limitations. So don't be hard on yourself…go with it. I enjoy my siesta's :)

Much love xx

cathie profile image
cathie

I look at it as though I have two days instead of one when I sleep in the afternoon. That can be a bit disorientating, but it does help me to feel that afternoon sleeps arent a waste of time.

It does help doesnt it to hear from other people who have similar experiences? XX C

Tia and Cathie

Thanks so much... now all I got to do is convince the rest of the family. Because I have been doing a bit more and feeling better... have a guess what..... yep as far as they are concerned I am back to normal and get dumped on... Like you say ~Steph ~ sod it.... :-)

Much love Julie xx

sylvi profile image
sylvi

Hi Julie,

I can understand what your saying as i feel the same. I've had a few good days despite being in pain, i've felt fairly well. Then last night my skin starts going funny with the red blotches and my tinnitus starts to get load. I knew then i was in for a bad night, sure enough i was downstairs at 4.30 this morning. I don't know where to put myself today. The fatigue really gets me down. I'm 55 and feel like 100 today. Theres no rhyme or reason to this disease. To cheer me up last week i had my hair recoloured, its bright and it cheered me up a bit. But like every thing else it didn't last. I was in the garden potting seeds for bob to put in the allottment, any wonder that i'm cream crackered, but he ho you've got to do these things or you'd been bed bound before you know. I'm also overweight too. I'm in a catch 22, can't move very well so can't exercise and therefore can't lose weight. Keep going gal enjoy the good days and say sod to the bad days and sit and rest. I know i should practise what i preach, but i try, my husband says i'm very trying!!!!

Take care love sylvi. xx

in reply tosylvi

hehehehe Sylvi you made me smile. I had exactly the same, went to bed one night dead tired but couldn;t drop off properly just drifting, and then along come 4a.m. and you have to get up. Then dog tired again when it is the proper time to get up..... I get blooming tinitus too..... going to too many rock concerts in my misspent yooff! :-)

Thanks. love Julie x

sylvi profile image
sylvi in reply to

Julie,

My pains worth it if made you smile, I know when we're like this we don't have much to laugh about. I've been asleep on my chair for an hour was that tired. I couldn't go to bed as my son was in it as we were waiting for the gas man to come and the boiler is in his room. So there i was sound asleep in the chair with a blanket over me like granny grimble, but boy did i need that sleep. Thankfully i've got one of those rise and recline chairs that role flat out. They are so comfy. The money we've spent to make things easier for me is ridiculous, There's a good living to be made out of us poor disable folks ain't there.

As to rock concerts the loadest i ever went to was gary glitter, the best was hot chocolate, boy was errol brown sexy !! Misspent youth hey.

love sylvi. xx

Gina_K profile image
Gina_K

Hi Julie, Any better today? Is your sun shining:)?

in reply toGina_K

Hi Gina, well I had a slow start.... luckily number one son is home to help on the farm so I was able to stay in bed.... so that was good. But the sun started to shine and I was itching to do something, but I felt so blooming tired still. However, I managed to drag myself out of bed and have done some office work, and had a little snooze just after lunch. Just off to make a cuppa and read the rest of my book. Thanks for asking

love Julie xx

Gina_K profile image
Gina_K

Julie, I also have a dose of fatigue last few days, probably, the exitement of wedding etc. Anyway, have been 'saving spoons' as back to work tmaro & visitors on early ferry to Holyhead :(

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