Well today has been glorious and i am now paying the price for this lovely weather. Hubby dropped me off in the village so i could pay the papers. I then went and saw my grace who was at work as she is a bit down. Got her a coke and i got water for hubby and flavoured water for me. I intended to walk home,instead i found i walkng to the allotment where hubby was working. I sat down there with him for a while and then he dropped me back off at home.
Now the positive thing i have done today is i have been in the garden tidying up. What did i start. I was cutting back on bamboo and cutting off dead bits in the garden and moved a bench that held herbs on it and swept the patio up and repotted some lettuces. I have put stuff in baskets and then i sat in the sun. You wouldn't believe this, but i have got a touch sunburnt. I have white marks where my t-shirt has been. I have had a couple of garden chairs out as well and i have been relaxing in one of them.
Now the not so positive is that i ache like hell now. My fingers feel like they have been through a mangle, and my feet and knees well they are a right off tonight. I am so going to pay for this tomorrow,i just know it. Well i had to make hay while the sun shone now didn't i. If i am to suffer with this pain i might as well do something to make sure i know why i am hurting and not just because arthur has nothing better to do. So up yours arthur i now know why i am in pain and it is because i have been working in my garden.
Now ladies and gents don't go and do what i have done as i know i will pay for it as i am already,but that sun was just too good to miss. I hope you have all had a good day and i hope you have a good one tomorrow....xx
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sylvi
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well ive not been as busy as you but i decided to show my grandchildren what i could do on their trampoline in my youth i was good but being not to far from 60 with a false knee bakers cyst and slill in a RA flair i managed a few jumps did not make a flip try that next week once my back has fixed but that was hurt trying to get off got stuck on the steps
glad you had a good day but take it easy and try not to do to much
Wow....., well done Sylvi you have been a busy girl, and I know how you feel as I have been gardening in the sun as well, and my hands are starting now. Like you I feel that I have to do things when I can and not let this disease win !! Tomorrow I know it will get its own back !!
Hi Sylvi really pleased you have enjoyed today. I really hope your not going to suffer to much.
Today i worked for four hours found oh hovering his car. So i thought yes will do mine as i had sarnie crumbs every were. I have a tenancy to eat and drive. Now lower arms are making themselves really known !!!!!!!!!!!!! Knees are joining the party come to think of it hands fingers. However the weather was fabulous and i really enjoyed what i did.
Of to bed now xx
it was a nice sunny day xx
Sounds like a lovely day Sylvi but where was your sunscreen!! Hopefully you'll get a nice healthy glow and everyone will say how well you look. I'll be glad for a bit of a tan this year as since starting mtx I've come over a bit Morticia Adams! We've got a day of seed sowing planned for tomorrow and if it rains we'll just retreat into the greenhouse. x
To be honest paula i didn't realise it was as hot as it was until it was too late. The sun is up and it looks lovely out there,but until my meds kick in i won't be doing much. Just spending time on here for a little while. Hope your ok my friend.xxxx
No sun here today and cold - I'd rather have sunshine with after pain than cold grey pain free day myself - Everything seems more manageable when there's warmth in the air somehow? Glad you got planting and keep finger raised at arthur! Xx
I will tilda,i know i am going to suffer today,but i will put sunscreen on today though.xx
I'm not feeling tooooo sorry for you (don't want that to sound mean though because you deserve all the sunshine you can get) but its grey again up here and still wearing gloves! X
The sun makes all the difference tilda and i would be like you. I don't think it will be as nice today as yesterday,but we will see,i hope you get some sun soon.xx
Actually Sylvi I'm being spoilt. Its been relatively lovely here this year - see my blog photo for confirmation! You enjoy yours now hope it holds up. Vit D absorption is a huge plus for us xxx
Sorry you're suffering, but like you say at least you have achieved something good and enjoyed it. Hoping the sun shines for you today so you can sit out and admire your garden.
First off Caroline i am going up the village to get the milk and then i will get the chairs out,need to do the pacing thing so chairs are essential,but first i had better get dressed.xxx
Wow Silvi
You have tired me out just reading that lol, I do hope your not too bad, yesterday was beautiful and fingers crossed today looks the same. I hope you can at least get out and sit and view all your hard work from yesterday x
I've been in a flare for a few days so haven't been up to much, after a shower yesterday morning I felt that drained I just wanted to go back to bed, however my lovely OH dried my hair helped me get ready ( as really struggling) and he brought my electric wheelchair in (it had been on charge) and off we went with our little dog to the beach , we had a lovely stroll or roll in my case down the beach, our dog ran onto the beach and loved playing with other dogs for a little tiny dog he don't care the size off others and suffers from big dog syndrome lol he is convinced he is a lot bigger than he is, we went down the prom for a few miles stopped at a hotel beer garden and we all had a drink met a family who were on holiday had a chat advising off places to eat etc and then we went off on our way back, line sun was lovely and didn't feel to hot, however I always apply a moisturiser with SPF15 just because when I first started methotrexate I burned and blistered badly within a hour off sun, so I'm extra careful now, but even with the SPF15 I had still caught the sun like you Silvi I have white bits.
We got back ate lunch outside ( a salad OH had prepared before we we t out) and I had felt great for getting out, however the fresh air and effort off getting ready etc really tired me out so much so I fell asleep in my chair, and had around three hours, it may not sound much but this week I've been in that much pain with my knees and ankles being almost double there size and my back problems causing me even more pain than usual that I've been lucky to get an hours sleep without waking having to move round etc today we are back home so no beach however my niece is round so I've agreed with OH to do the same again today and get out even though I feel like curling up and crying and take my niece to feed the ducks. So hopefully if I sleep like yesterday I will start to feel better after sleep.
Oh Julie my love you are having a time of it aren't you,i feel a fraud next to you my friend. I am going back out in it today after i have tried to get up the village,i don't even know if i am able to make it yet.
I will pray you soon feel a bit brighter my love.xxx
Aww no don't be silly this is a flare hopefully next few days it will be loads better. Hope you can make it but don't push yourself too much Hun xxx thanks for your prayers xx and I already feel brighter after the sleep so hopefully today doing the same and more sleep will help me get right xxx take care. Xx
It was a slow walk up there and boy did i suffer. I was in the bargain bar and hubby rang me to see where i was as he hadn't heard from me,so he came and fetched me. I was having a lovely chat with the owner. It was a lovely walk and slow. I have put washing on line and hubby made the tea.
You need to rest as much as you can until it settles down,if the sun is up wrap up warp and get outside in your chair and enjoy a few rays. I have taken some more painkillers and i will sit for a while. You take care my friend...xxxxxx
hope you all get over the pain of doing a bit in the sun. I did the same and tidied up my tubs as i grow vegs and flowers in big tubs, so i dont bend to much as my back soon goes. I have over done it and am now suffering still got more to do but that can wait for another day. Sending everyone hugs and best wishes.
Just got back from my trip to Scotland. I was there for a month and enjoyed it very much, it's my favourite place. Have had several niggles (especially in my hands, knuckles and shoulder) while there, managed to ignore them and get on with it. The weather was really good, apart from a few gales which only lasted a couple of days, the rest of the time it was cold but sunny. Our flat overlooks the river Clyde, so it's good to watch the dramatic waves lashing on the shore, from the comfort of our lounge. Sorry to hear Julie and Sylv have been having a rough time, hope you are both much better soon. Sylv. your spell in the sun should have given you your ration of Vit. D, which is said to helpful for the joints. Now I am home we shall have to make arrangements for that coffee next time you are at Walsgrave, shall look forward to it.
I was there last week taking my sleep machine back .I was there thursday as well to pick it up. Wheni am there for the results i will let you know. I am glad you had a good time in scotland.xxxxxxxxxx
Yes very beautiful weather and glad so many have been taking advantage and hope not too much pain tomorrow as a result. I have been in bed all day and and just up 6.30pm but sun has been streaming through the windows and is still now doing its last few glorious rays of the day.
Had a rather ambitious Saturday and paying the price. Not done anything major, but a few little Local trips in the car, hubby driving, but even getting in and out was an ordeal. Nice to be out with my husband though. Just hanging around tomorrow, waiting for hospital to confirm my blood re tests OK (those which they didn't do in my biologic screening end of February and have only just been picked up since I have been chasing my Enbrel) and hoping as they promised on Friday results will be fast tracked to healthcare at home and priority delivery so I can get the nurse to do my first Enbrel on Friday if this all happens and if it doesn't then another week of awful pain and disappointment to be truthful.
With this in mind I am going to take a break from posting here as I am normally very upbeat and supportive but this madness of my out of control RA and waiting for a biologic has got to me, so hope you all have a good week.
Julie,I hope that you will still read this then,i am suffering this afternoon and well into the evening. My fingers are soooo bloody awful i have been having a few weeps over them.Its gone thre in the morning and i am down here as i couldn't settle,the straps i had on my hands were uncomfortable as well as my wrists. I do hope your enbrel gets to you and it eases your suffering. It seems my poison will be cimzia when i get it and god only knows how long that will be and until then i have to suffer the pain. No good moaning i over did it and i am paying the price,but i started on the old tan so that was good.xxxx
Sorry your now suffering so baldly , its cimzea that I started and have had two doses already should be due my next dose Wednesday but my uveitis in eyes isn't healing and they are worried for the sight in my left eye so I've been told to miss this weeks dose and my methotrexate too, and I'm in a flare before missing either:/
I really hope cimzea helps you its enbrel that was my first anti tnf, then rutiximab then tocolizimab and now cimzea but hoping cimzea is mine and your drug to get us moving better x
Aww you moan away (not that you are) sometimes it makes us feel better, and even though you've don'e something (overdoing it) to trigger your pain its still annoying and sometimes worse because really we should no better lol but typical RA' ers we grab every goodish day and make the absolute most off it.
Sorry your hands are so bad its my knees and back keeping me awake and stomach pains, I think the huge increase in predisolone I'm using at the moment for my RA and for my eyes is triggering pain (from stomach ulcers caused by the tocolizimab)
Oh the joys I hope you manage some sleep
I'm going to wait up now at I may as well phone my parents and make sure there up at 4am for there holiday (flight at 7.30)
Then will try again after that I didn't need to get up while I'm wide awaks as my OH is on the night shift so I've only the pooches to disturb.
Do you have a wax bath for your hands? I find mine helps with the pain and I wouldn't be without it xxx
I have a wax bath Julie and i must get it out of the wardrobe in the spare bedroom. I had my tear ducts cauterised 18mths ago to keep the fluid in them and i have to take drops now for the rest of my life as they still get dry,so i can sympathise with you on your eye problems. This RA doesn't come on his own does he. I hope your mum and dad get their flight and they have a lovely time,i have given up going abroad until i feel well enough to travel that far. Its coombe martin for us this year.xxx
Sorry you too are suffering so badly just wanted to say I really hope you get your enbrel soon, healthcare at home are normally pretty on the ball an quick its he rheumatologist that are a nightmare x good luck with enbrel
hi sylvi, I love reading your posts, they often put a smile on my face. I like how you say how it is. all us RA suffers know the price we will pay for doing to much. (even though its not nearly a tenth of what we could do before RA)
being out in the sun is so uplifting to our moods that before we know it we are pottering on here and there, then we remember, arther will do his worst later. shame its not continuous sunshine then intead of lying in bed or on the sofa we could lie in the sun.
jenny.xx
I use my wax bath daily I find it really does help, we will try anything when were in pain, I've got two electric heat pads on at moment and was using tens on my back earlier.
I started with uveitis way before they diagnosed my RA however I think I had RA at the time and it was being fobbed off as other things it wasn't until RA had me bedridden and hospitalised they picked my RA up,
Dry eyes is something I suffer from daily too and I use the false tear drops too, uveitis is basically inflammation off the eye and I have both anterior and postirer uveitis which means it inside the eyeball and also around the surface its that inflamed I feel as Iif I have constant. Toothache and earache with it :/
But it is getting loads better at first I could t stand any light indoors or out of it felt like someone sticking pins in my eyes, however that's been eased with drops to relax the eye the drops people have when having a diabetes test in there eyes which makes everything blurry and fuzzy, I'm also on steroid drops for my eyes every half hour and cream twice a day along with the false tears too, your right this is just another auto immune disease to add to my RA and my psoriasis, I'm sure my mum and dad will have a ball and a well deserved rest as they do loads helping me out especially during the week my hubby is on nights my sister is taking over for them , I'm lucky to have such a fab family.
And I'm the same we haven't risked going abroad either we just make the most off out caravan in Wales, my doctor nearly had a fit last year when I said I want more meds to cover me for my two weeks holiday he was like no no do you really think you can go on holiday what if you flare badly over there , I said I was only going Wales and he said phew and gave me my meds. He was right to worry though I did end up in the Wales hospital needing fluid drained from both knees and steroid injections as I could t bend them at all, but its not the first time I've been to the hospital, while in Wales for my RA.
Well I hope you can get some ease, if you can't dig your wax bath out now and wait for it too melt fill a bowl with hot water and do gentle movements in the water see if that eases for you.
Hand pain is the devil as it restricts everything :/
It is making me very tearful at the mo. They are so sore i don't know where to put them. I have a heating pad and its on my shoulders as i speak.I hate feeling sorry for myself but thats how i feel. I think i had better try and go to sleep or i will feel worse than i all ready am.xxxx
Good luck with the sleep I'm going to try now too, sorry your in so much pain sometime awe need a good cry can't suffer RA and hold it all in or we would be nuts.
Aww sending you big gentle hugs and hoping you get some ease keeping you in my thoughts I've for my hearing pad on but now having hot sweats too we can't win can we, I don't suppose these five furry creatures (dogs) are helping the sweats as its a fight over who can get closet lol xxx night night SIlvi sweet dreams hopefully xxx
I woke up just before seven so i think i had a couple of hours after having a good old weep. I hope you have got some much needed sleep.xxxx
No I'm still here :/ not had any yet I will fall asleep at some point I should have taken one off my zopiclone however I don't like taking them to late as they leave me zombied all day , but with no sleep. I will be worse than a zombie x
Hope a sob helped althought we shouldn't have to suffer like this :/
I have had another weep this morning,i just can't get past the pain. The harder i try the worse i get. I want to be able to get into my garden and do things is that too much to ask for.I should get my backside in motion and stop feeling sorry for myself. The sun is up and i should make an effort to go out. I hope you get some rest today and you feel brighter as well.xxx
Hugs Silvi I know how your feeling as been there way to much x
Try to sit in the garden rather than working in the garden if you push yourself you will only end up worse (well I always do so I imagine you will) really hope you feel much better soon don't punish yourself though you have a right to sob, you have a right to rest and a right to feel sorry for yourself, think most people with a cold would have complained more than you have and RA is over hundred times worse.
I'm going to try a shower soon, I need to do a shop (Tesco) my sister is here to help me but depending on how I am after a shower etc it maybe an Internet shop.
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