Exhausted ............: Afternoon all, well what a day... - NRAS

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Exhausted ............

sylvi profile image
16 Replies

Afternoon all, well what a day I shot of to bedworth this morning to get the milk and vege. Hubby stayed home as we are having our electrics rewired.Had a good trip over there and went into store 21 again, got a couple of tops for the winter. Got home and yes i rested and hubby made lunch. After lunch i made a start in the garden as i spent some birthday money at the garden centre on monday. My son had left me some money in my birthday card before he left. I had done on basket thats to go back on the garage wall. I have cleared up and put everything away.

To say i'm shattered is an understatement. I am still full of cold,my chest feels congested,but as i'm coughing up stuff so i'll see how i am in the morning. My fingers really are sore and swollen. My little finger is a bit bent and sore in my middle knuckle. My middle finger is so swollen you wouldn't know there was a knuckle there. My finger pad is sore to touch as well and its especially annoying as it is all on my right hand and guess what, yes i'm right handed. Life sucks at the moment. I take one step forward two back all the time. I have a lovely hubby and family and a mortgage free house and hubby retired so we should be able to enjoy our retirement. Instead he is looking after me and the house and we can't plan anything as we never know how i'm going to be from day to day. I look pchyically well, until i start to walk and do things.

My hubby and daughter are upstairs cleaning up after the electric man has left and i am too tired to help, despite the fact that i have been sleeping better.

The weather has been nice so i was able to get outside at least.

Hope you all are keeping well and are painfree..........

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sylvi profile image
sylvi
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16 Replies

Exhausted you! You made me exhausted reading what you have achieved so far today, I am a right lazy bones compared with you. But if you have read my Indian blog you will understand fully.

You have so much to contend with and yet you have such a bright, breezy nature are so full of good advice to us all, where would we be without your chatter. I do hope you get a good round sleep tonight as that's one of your unlucky bug bears.

What are these store21? Down here in the capital have not come across those, sounds interesting.

Enjoy the rest of today..................

sylvi profile image
sylvi

Georje, store 21 is like peacocks store,they sell some lovely clothes at prices i can afford. I begrudge spending a fortune for an outfit that i only wear once. For £8.99 i have a lovely soft top that will look nice with trousers or skirts. So i got two different colours.

Bright and breezy, well i have never been thought of like that before. Mind you, you don't see me when i'm breaking my heart out with pain. I can get very down,and i can be a right pain in the whotsit. I get on my feet and start to do things and my breathing gets laboured. I used to work full time and i loved it,but when ra struck it has been downhill fast. It irks me when i can't even do my own housework. I do try to be cheerful as i always think that there is always someone worse than me. sylvi.xxx

Ah, but we do see you when you are in pain. When there is no blog from you, we know that you are not feeling the ticket and the pain is at it wildest, then our hearts go out to you.

Peacocks, I have heard and come across those in the West Country, the only cheapie's we have here are Primark or New Look otherwise it's the usual stores.

sylvi profile image
sylvi

Well Georje, its better than new look/primark as they do bigger sizes and more different clothes that ladies wear that like nice looking clothes and ridiculous fashions.

I never thought about that when you say you know when i'm in pain. Sadly your right. You know me too well. I have friends who live near me who don't know that much about me. That says a lot about my friends. As i can't get about and go and see them they don't want to know. I thank you for caring so much about me. Love sylvi.xxx

Jan66 profile image
Jan66

Sorry you are feeling so awful.

To me you seem to achieve an awful lot!!! I know what you mean though about when it affects the hands.

I am really scared that if my hands give up then my life won't be worth living and I said that to my Consultant yesterday. I also said that I am only living half a life - and she said " well we can't have that, can we?" SO they are putting me on MTX injections and I sure hope that helps.

Hubby was sitting in on the Consultation and he looked shocked that I said it like I did BUT this is my life (and his, of course) - he was more depressed than me when we came out.

He is the best man in the world to me. Going now or I'll blub........

Take care

J

sylvi profile image
sylvi in reply to Jan66

Jan i know exactly what your talking about. I have said much the same things. I have also said in times of very bad pain and depression that i would be better off dead. I feel that this disease has taken so much away from me. There is a life worth living for us,remember god only gives what he knows we can cope with,there have been times when i have doubted that piece of advice. Only someone who is strong can manage this disease as well as we do.

You like me has a brilliant man who loves us and would do anything for us. So it is up to us to try to keep smiling and keep carrying on.

There is a song on music centre and it is by gloria gaynor called i'll survive and thats jan what we have to do. xxxxx

Jan66 profile image
Jan66

Know the song well - will sing it out loud and clear!!!!

X j

claireyj profile image
claireyj

Sylvie, You made me feel so much better the other day ...I really wish I could do the same for you...hope you feel better in the next few days ...go have some more retail therapy always helps doesn't it?!t

Take care Claire xx

sylvi profile image
sylvi in reply to claireyj

Claire, i won't be going very far today as its pouring with rain. I am glad i made you feel better.Retail therapy,ah now that is another story. I put a wrap round my shoulders a few minutes ago and hubby hadn't seen it and asked where i got it from, (your going to love this) i answered him from the wardrobe of course!! The real story was o got it in tesgos about a fortnight ago. It is a leopard print wrap and it looks lovely and it will keep my shoulders warm. Yesterday i got a couple of soft touch t-shirts and i just put them upstairs. I am a naughty girl i know.

I am sure you will have a laugh at this reply. love sylvi.xx

claireyj profile image
claireyj

I laughed !!! Get you with your leopard print wrap love it!! C x

su2po profile image
su2po

Hope you're feeling better soon as my hero Charlie Chaplin once said " nothing lasts forever in the this wicked world, not even our troubles"

sheenerweener profile image
sheenerweener

Hi Sylvi you put me to shame,I,ve done hardly anything and I,am shattered!!!I had to go to job centre today only to find when I got there I didn,t need to be there as I am in the support group not the wrag group I so unsure what they really mean all do to with employment and support benefit!!! I walked around as I was too early got soaking wet so tired and soggy when I got home,but my hubby made me a lovely curry and I am now resting with pain killers as all limbs painful still from weekend when I wrote on here,any way you keep up the good work in garden etc and try to.rest to gentle hugs,hope you feel better soon xxx

i understand Sylvie, i am going through a period of feeling ok, but i have to remember my limits. Its so easy when you feel a little better to go helter skelter into life again. Inflammation is at its lowest in a year, i am on a very mild dmard - sulpha supplemented by a big steroid injection and it has seemed to have been very helpful over the past month.

I am also meditating (don't laugh) and have cut out caffeine and dairy. Not sure if the latter are also contributing..

Anyway found an old steamer and realised that with the little wire brush it did the same job as heavy scrubbing so had been using that to go over tiled floors. I am half way through the kitchen. But i can't do more than a half hour otherwise everything swells up again.

So the moral of the story is put the feet up, get a good book and relax until you are able to have a go again.

sylvi profile image
sylvi

Morning all, another good night under the sheets. Got up at 7.10am could have slept in,but the electrician will be here by 8.00am so i knew i couldn't lay in any longer.

Mads, i too am on sulpha, last night i took three mtx so should feel brighter today. My breathing is still not good,but until it comes up i will still sound like an old man smoking 60 fags a day. My fingers are still very sore. My middle finger on my right side is still sore and swollen, but my fingers are changing shape quite rapidly.My dab is the worst,it feels like a slither has got into it,but i know i haven't been any where near anything that would do that.

Sheener,you want to complain to the jobcentre. Its no joke is it when you have managed to get all the way there and find out you didn't need to. I can only get out because of my scooter,otherwise i would be reliant on others. You want to think about getting one. I hate mine, but its a means to an end.

su2po, many thank for your wishes,it is nice when others care so much about me.

Its is raining here in sunny bulkington, so i won't be going very far today. Hope you all are well.. xxx

Judi profile image
Judi

Hi Sylvi, ah ........ retail therapy ! You have reminded me Husband and I were on way to see youngest daughter in hospital on Monday and passed a car boot sale. As we were passing I said to OH "that's a big one, I'd love to look around there". His response was "you'd only manage to get from the car to a couple of stalls and then need to get back to the car". Whilst I realised that he's right it did make me a little sad. Those were the days.

Needless to say I soon perked up when we got to the hospital !

I'm being considered for another biological as the previous 2 haven't done much good. So keeping my fingers crossed that they find something which makes my life a bit more acceptable. (We live in hope). Have to wait until the end of the year so that retuximab is out of my system.

Regards, Judi xxxxx (PS - hope you are not so sore today)

sylvi profile image
sylvi

Judi, i used to love car boot sales,i miss those days. Like you i couldn't walk round one to save my life. You don't say whats wrong with your daughter, i hope its nothing serious and she is recovering ok. There have been so many changes to our lives hasn't there. My big passion was disco dancing. Put a bit of music on and i would be dancing the night away. Nowadays i can't do any of that. Heart fm has been playing music that i love from the 70s and it has brought a lot of happy memories back.

My throat is still sore,i think i might soon have to give in and go to the drs and see what they say. My hands are still sore. I keep thinking i ought to ring my rheumy nurse and see what she says,but as i have been on the phone so much to her i am a bit reluctant as i feel like i am am nuisance. I am sleeping better thank goodness.

Sylvi.xxx

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