I have put up a lot of things to cheer everyone up and nothing much about me. Well i have been having a hard time of it laterly. Both hands are sore and swollen,my feet are burning hot when i am walkng and after i have got of my feet. The rheumy thinks i have "reflex sympathetic dystrophy" All i know i hurt. I take all the drugs they give me and more painkillers than somedays that i should. I try and behave myself,but sometimes i overdo it. I used to be able to do all my housework and get the dinner ready to boot. Now all i can do is sit and watch. That is what gauls me that i am unable to do anything without suffering the concengretices(don't mind the spelling)
I have lovely nails done every three weeks to try and look normal and healthy and i have my hair coloured every three months. I try to look normal as much as i can so people don't see whats really going on. I know i'm wrong but thats just the way i am. People see me walking and think things are back to normal "whatever that is"
I hope you are all feeling wellish and ready for some of this lovely weather we are suppose to be having....xxx
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sylvi
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I think we all try to keep up appearances as they say, and its really hard sometimes, when tiredness and discomfort are always rearing their ugly heads!
Since I joined this forum, I have always thought of you being there for others, and full of stories. A real trouper for the cause.
Re the burning feet, I too get this, when standing a bit too long etc., I think it's just another symptom thrown out by RA. Have you sorted your medication out yet, because, it has made about 120% difference to the way I feel, although not every day.
Do try to keep moving a bit, as it is so easy to lose one's mobility.
We could all do with some sunshine Jenny. I just feel a bit fed up with the pain. No i haven't got them sorted yet. See the rheumy on the 17th of this month. Then we will see what will happen. Take care..xx
Hi Sylvi, I read your blog & my heart went out to you.This sh,,t disease takes so much from us & yet we come up fighting again& again. Your gift to us is immense, thank you. I pray the response you get from this brings you a warmth full of love,understanding & gentle hugs. We are so reliant on the drugs prescribed despite the side effects to gain some quality of life. For some this works really well, thank goodness but not for all. We carry a burden which most people do not have any idea about.
Not sure my words say what I hope but I do send you love & I wish I lives closer to call in for a cuppa! Take care of yourself & I hope your OH is much better.
Alison what can i say to you after that lovely reply and i thank you for it. I will not give in,its not in my nature to give in. I just get laid down with the burden of it all.xxx
It is a rotten disease. It cares not who it attacks nor does it give a jot about the drugs we throw at it. But we will as its in our nature to keep "plodding on" trying our best to keep cheerful and do our bit. It take a brave character to "keep going", I'm glad to say you look great. Keep having your nails and hair done. Brighter days are coming for all of us!!!!
Well girls do you all want a laugh? I went and had a bath, Its not just stripping of my clothes,I have to take the pads off my toes,the strap of my ankle, my hearing aid out and finally i had to take my glasses off,all that to have a bath. What do you make of that then. It is a bit funny really all this because we have ra. I also forgot my hand straps too.xxx
I went swimming the other week, great hand rail to get in he pool. THEN I got in the hot tub, oh my heavens, what bliss, as I haven't had a bath for almost 2 years. Even had a hunky lifeguard plus son helping me out, I'm going back as soon as my car is fixed. BLISS
Oh grace,the pleasure of a hot tub now that i would enjoy.xxx
Hi Sylvi - I so hope you do get put on an anti-tnf and it works brilliantly for you. You have been in pain for as long as I've been coming on here (about 18 months now) and yet you do try ever so hard to keep up the humour and the kindness to others. Interesting about feet. My RA (see how confidently I'm saying that just now?) started with pain in both wrists, both knees and both feet. The feet were the weirdest thing of all because it felt as if I was walking on burning hot coals and i would cry out when my feet touched the floor every morning. It just went away eventually while other bits - mainly shoulders, hands and wrists - became significantly worse. Then the loss of appetite I had from the off meant I lost a lot of weight and I sort of assumed this had made the difference. But for the last week or so I've been getting it again - not nearly as badly but this morning my husband said "uh oh Tilda you're hobbling?!" when I got back into bed at 6.30 am after going to the toilet. I hadn't even noticed because I was half asleep but he was quite right! I thought it was called Plantar Fasciatis or something but maybe this is different? Anyway you have all my sympathy. If I could send you my vibrations in my pelvis that might cheer you up and give you a giggle too - so here they come like the song by the Beach Boys - wending through cyber space to make you smile a bit I hope! Tilda xxxx
Burning hot coals thats exactly what my feet feel like even now. I have had hubby rub some linament on my shoulder as it is so sore. I wonder if it is because i have big boobs. Do you think if i go to the drs and tell them that my boobs are affecting my lifestyle they will give me an op to reduce them,well they did give that young an enlargement on the nhs....xxx
How come you all know me better than i do myself. You all know when i don't blog i am in pain,i have never thought about it like that,but it sseems you are right.xxxxx
I tend to think that's how caring, thoughtful folks normally deal with their own problems ....as in they don't go on about them all the time.... because they are always helping others rather than themselves.
Poor Sylvi, you do sound so low and unlike your normal self. Let's hope you get a good rest tonight, and maybe spring is just around the corner for you. I'll keep my fingers crossed that you get the anti-tnfs and they work brilliantly for you. I know the difference having meds that have worked has made to me, and I so wish you the same. I really couldn't believe the difference and how I went from not being able to get out of bed to nearly normal, so it can happen and I hope it happens to you to as you deserve it. Polly
Thank you all some of your comments have made me laugh.xxxx
Hi Sylvi,
Sorry you are having such a hard time at the mo, I think we could all do with some warmer weather to cheer us up a bit. I too hope your appointment goes well on te 17th and they get your meds sorted for you.
You are such a lovely lady and always here to say a word or two to anyone in need - thank you.
Mary xx
Yay... Good news! Spring might be arriving next week, it will be good for all of us to at last feel some warmish sun, help ease the aches and pains and lift our spirits... It's been heck of a long time coming!
Morning all,its 2.30am here in bulkington and i have just taken some pain relief. So here i am in my RECLINER with my snuggle wrapped round me. I hope i can get back to sleep Hope you all sleep well.xxx
you are in a lot of pain and had a realy shit time of it this last week but i will say this you are the only one on here who has kept me sain through all this bloody aching and trying to walk corectly and tell me what to do
but for everyones coment on here re feet shoulders their is no getting away from sir issac newtons gravity
some thing out down below we all seem to compensate with it using somthing else
Hi Sylvi, I'm sure the sun will shine on you first, it always shines on the righteous and you are one of the best, always there for everyone else. My hubby cut the lawn yesterday and got out the summer furniture because they(you know the weathermen/women) said it was going to get better! guess what; we have snow again this morning! Hibernation comes to mind. I hope you are feeling a little better today and enjoy all the lovely comments that are heart felt and genuine just like you.
Love and hugs Carol
Hi Sylvi,
I'm so sorry you're having such a rough time of it. You are our centurion on this site Sylvi. The one who keeps us going through thick and thin but we know how much of a difficult time you are having of it at the moment and are right behind you.
I really hope that your next appointment is productive and that you get the Anti TNF.
Lots of love and hugs
Judy
Dear Sylvie,apart from agreeing with everything everyone's said, all I can say is that,since coming on this site, well over a year ago now, you have been a constant support to me, and I wish there was something I could do for you now. All I can do is say a prayer for you and keep you in my thoughts which I do most willingly.
so sorry to here you are so down i am the same i have only came on this site 2weeks ago
i did think i was the only one so bad .
ballyboy .
hi sylvi so sorry to hear you are still in so much pain , well as everyone has said the spring is on its way and that means warmer weather for everyone.:)) You are a tower of strength to everyone on here and always welcoming of the new people that join . I hope your meds work fast for you and you get some relief that is when you get them. In the mean time the biggest soft hugs coming your way and remember where here for you too dont suffer in silence hun, your allowed to have your grumble about this dreaded disease too . :))) xx lena
P.s you made me laugh about the bath i remember having a similiar experience only just a few weeks ago lol , at least we still have a laugh about it. :)) xx
Thinking of you sylvi & hope you get the meds that you need soon. Thank you for replying to all when you feel in so much pain,it's obvious that we all think the world of you.x
Hi Sylvi. I have only been on this site for a little while but in that time I have found it to be very helpful. I agree with all the others you are a lovely lady, you are very supportive and so thoughtful. I hope you get your meds sorted and start to get some real help soon.
Franbie xx
As you say we know you of old, no blogs, no responses, Sylvi not too good!
Well I thought of you a lot last evening when I was watching the telly, I watched a programme set in an Australian hospital on operations, one of which was a knee replacement on a person who had RA at the age of 30! He required both knees doing and had the left side done first which was the one filmed. I take my hat off to you, as it looked incredibly painful and along with your fibro, I am better placed to know what you have been enduring.
Loved the bit earlier on your daily bath routine, I think I would be tempted to take the lot in with me and remove whilst in the bath so that I had the benefit of hot water!
Take care my friend, I hope and pray that you have a better night tonight. xxx
Georje,i laughed at that i don't think my hearing aid would stand the water do you.We have just got back after going out for a meal for joes birthday. Joe shares a house with our grace. A good night was had by all.
I was at the hospital this morning with grace so i went and had a blood test done and while we were waiting for her i managed to see my rheumy nurse. Yep you guessed it i broke down in tears. She is hoping the mtx and the extra steroids will do the trick,me i am not holding out much hope,but i'll give it a go. You have a lovely evening and we'll talk tomorrow.xxx
Thank you all for your lovely replies to my blog,i didn't realise how many people there are on here and you all are lovely people and i am grateful to know you all. I thank you all from the bottom of my heart.xxxxxx
Hi sylvi. Yes, the weather is improving. Troppo season is almost over and dry season markets are starting soon. We are hoping to attract not more but any tourist realy.Nobody wants to visit darwin, its not the crocodiles, its just too expensive here and the weather. Its either you hate it or love it, no in between. Take are.xxxx
Aw sylvi, you are so supportive of everyone and you are suffering so much yet took time out to send me hugs and words of comfort. Well i am sending you hugs right back at ya. great big mammoth ones. take care. xx
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