I wish I could take a day off and spend it in bed.
I wish I didn't have RA.
I wish someone could find a magic cure so we never had to suffer this any more.
I wish I could sleep better at night.
I wish people wouldn't look at me and think I am well just because I try to carry on.
I wish people wouldn't assume I don't need my blue badge just because I am not in a wheelchair (not yet anyway - once was enough) and the RA is not noticeable despite the pain I am in.
I wish people wouldn't barge into me when I am hobbling along slowly - it doesn't help and I could fall over and not get up again without help!
Feeling sorry for myself today. Very tired, both shoulders are incredibly painful despite the pain killers and anti inflammatories. The top of my missing left breast is painful but have had a look and can't feel or see anything wrong there - think it may be referred pain from the left shoulder. Feet also very painful and difficult to stand or walk on them despite the insoles which seem to make the left foot worse.
So tired and weepy at present. Could just sit and have a good howl.
The person I thought was a good friend has let me down badly and I feel very hurt and upset. My only comfort during the day is my junior Labrador Berry who is incrediably sympathetic and licks the tears off my face. He seems to know when I am down and in pain and does his best to show he cares, daft as it may sound.
The only good thing is I have lost 12lbs on my diet so far. LavendarLady x
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Oh I hate to hear you like that, you poor thing. I am sat here with my laptop on my bed with my little boy sat next to me with his fruit tea and a book as my knees and right hip keep giving way. Had my other little boy in tears this morning in the car on the way to school as he does not want me to get old and die (I call it peter pan syndrome) it truly can be a rubbish life sometimes, but like at Wilby she gives us all hope. It may well do you good to actually sit down and have a weep maybe that's what you need at the moment. I tend to allow myself a set time for feeling sorry for myself then It's time to face the world again. By the way I agree with everyone of your wishes. Big virtual hug to you. x
I just wanted to remind you that after the storm there usually is a rainbow. Just keep thinking that this pain will end and one day you will wake up feeling like you can manage this today
I am not making light of just how pants you feel, i just know that when we feel like that it is hard to imagine things will ever seem better.
Hi ladies thank u for your comments on my blog they made me smile, I've just woke up and gonna make some lunch.
Lavenderlady I really hope you feel better asap, I agree with your wishes too, just because we have a smile on our faces and look well doesn't mean we r there's pain and depression but once I had a time of letting my pain and feelings show and my two best friends said I was boring to be with and I found this out by reading it on Facebook I confronted them and they said they were fed up of me moaning about my ra. My partner said a similar thing but he wanted me to look on the positive side. They really dont understand which is a reason why I joined this site.
I used to have a dog called roxy she was amazing we had to give her up because we moved home and my mum had a dog but he ended up getting put down. But my dog roxy was loving and I loved walking her because she wasnt too big she didn't pull and I enjoyed getting out the house we gave her up 2years ago and everyday I think about her I miss her so much so does Ava and she always asks where she is. I envy people with a dog because I k wi how much love you get back from them! I will get another dog one day but it will never replace roxy.
I hope u feel better give berry a big hug from me!! And one for you too xx
My dear LL,all that you say is true and i wish that i didn't have ra. You are allowed a cry as it helps relieve the tension and stress this disease causes. I had a good bawl late sunday night,though i am still in a flare it helped me. I still ache as much and tired as well,but the crying released something in me.
It hurts when friends let you down and it hurts. The number of times that people have said they would come and visit and don't gets me. I've got used to it now. I have my friends on here and i can quareentee no one here has let me down. You have been there for me when i have been having a bad time and you have always cheered me up.
i think you summed up how we all feel there. a good cry makes me feel a lot better. i always try to put a brave face on in front of others as i dont like them worrying about me . sit yourself down , have a good cry and tell berry whats on your mind. it sounds silly but you will feel so much better saying it out loud and berry wont judge you. he/she will just listen and give you lots of kisses hope your feeling better soon x
Dear lovely lady I feel for you. My friend of 30yrs ( from school) was very disrespectful to me on friday she also made fun of my condition. I have blocked her from facebook and removed her contact details from my phone.lifes too short and precious and she doesn't live up to my standard of friendship. My wonderful pet has been put down today and I know you and everyone else know how I'm feeling. You will rise above it and live to fight another day and its ok to hav down day. Love and hugs and hoping tomorrow is a better day. Xxx
Oh dear I feel so sorry for all of you - Lavender Lady in particular since this is your blog. I haven't been on here today until now because my laptop has been giving me much jip and I've just had a BT technician on the phone for hours trying to help me sort it out. So coming late to this blog of yours LL but just wanted to say that we all have days when the RA and friendship seem to merge and clash with awful outcome. I seem to be okay just now but I know who I can trust a lot more since the RA kicked off.
I may only know you from NRAS HU but I'm quite certain that you would not have gone on about RA at the expense of a friendship ever - you aren't like that. I think it is impossible for anyone who doesn't have pain 24/7 or a chronic disease like RA to fully understand how consuming it is for us - even when we have a full and active life to be getting on with. I got about 2/3 of the way through sorting out my laptop stuff with BT tech man and then suddenly felt overwhelmingly sick and tired to the point where I had to ask my OH to take over - which he did - looking very puzzled. I'm only experiencing low level pain just now but even that keeps me awake at night and in the day it takes very little to wipe me out.
I haven't had a fall out with a close friend recently but I have had issues with someone who I used to consider a friend but who now keeps dumping him and his wife's issues on my lap - as if I had any obligation or any reason to help him. By doing this he has potentially compromised me as a trustee of the group we both sit on together so I just phoned the chairperson to discuss this with her. She said, rather wisely I thought, that people who behave like this often choose their targets because they are at a low ebb and don't have the energy to resist or make quick decisions and walk away. I don't know what your own trouble with old friend is of course but perhaps this is relevant and is almost certainly why you are finding the RA is so much worse. My OT said that this is an autoimmune disease and therefore large amounts of stress will almost certainly lead to us flaring. Take comfort from Berry and get better soon. Love TTxx
Just wanted to let you know that I am thinking of you - it makes me sad to know that someone is feeling particularly low. I never seem to know what to say to help so I'll just send a hug to you and a pat on the head to Berry! Hope you feel brighter very soon.
Hi Everyone, thank you for your lovely thoughts. It is so good to have people who care on this site. Treesha, so sorry to hear about your pet -how awful for you. But at least you had so much pleasure from the companionship.
Have just come back from my Art Group which we have started up again after a 3 month break. We are now in the conservatory at Park House, the local Leonard Cheshire Hotel at Sandringham. Some of the guests staying there joined us as well. One lady was 101 (102 in 2 months time) and very lively with all her marbles. She is in a wheelchair as was the other person who came but both so cheerful. I could feel the tension beginning to drain out.,
We also had lovely tea and cakes at 4 p.m. as well provided by the Hotel.
Very restful surroundings. Did manage to lose an hour somewhere today which is worrying but mainly because I am so tired I think I misread the clock.
Did wonder if had slipped into a parallel universe somewhere!
The old friend is one I supported and helped throughout the time she had lost her husband. I was going through breast cancer treatment and ops but put that on hold virtually to support her. Since then, I have had little support from her. I try not to say anything about the RA and how I am feeling as it immediately triggers off symptoms of hers which of course are much worse than mine. She doesn't have RA or anything like it. But if I have a headache or a cold, she has a migraine or flu - you know the sort of thing. She has let me down so many times over the years, promising to take me out somewhere (including when I broke my wrist and couldn't drive) that was 3 years ago and I am still waiting! She seems to expect as of right, that I will have her round for Xmas, New Year etc and that I will drive her about when she is feeling low! But never offers to drive me, or invite us round for a meal.
This time we had organised a theatre trip and 9 of us were going to see Calendar Girls at the Theatre Royal,Norwich. We were all going to go on the bus in time to get a coffee and sandwich before the show. She immediately declared she couldn't possibly sit on the bus (obviously expecting I would say I would drive instead) and said she wouldn't go. I have managed to get another friend to take the ticket and she is happy to go on the bus as she considers it will be a laugh with all of us together. This is not the first time the "friend" has decided not to go on something which has been organised mainly because she won't be the centre of attention.
My hubby and other friends don't know why I bother with her as she can be extremely rude and speaks before she thinks which can cause a lot of upset.
Sorry to bore you all rigid but have got it off my chest now.
Thank you all again for your support. Love LavendarLady x
Well done for getting to the arts group and for getting your friend stuff off your chest LL but please can you now put her off your friendship list - cull her from it - she doesn't deserve you and you know it and now she needs to know it too! TTx
Well I wish I could wave a magic wand and make you feel better, make your friend realise what she's throwing away, and make everyone else around behave properly too. Down days are just miserable, so I hope tomorrow brings some more positive things.
But well done you for loosing 12lbs - that's impressive, so hope you notice the benefits and get a few compliments too. And well done also for sticking by an unappreciative so called friend, that's very stalwart but maybe time to let her manage without your support? Have a restful evening. Polly
Late on your blog LL as i got flu. got it on a nite out with the girls i went to uni with and one of them had flu. I told her i would probably catch it but the others scoffed at me!! and said it wasn't her fault she had flu. So have been in bed since last week and only starting to move around now.
Your wish list is one of the hardest things i have ever read as i agree with everything in it! and then you go and do something positive whilst i'm still moping and feeling hard done to about my careless friends making me pick up flu!!
You are a lovely person, so these "friends " are not worth your thoughts. I have a friend we have nicknamed the "hospice mate", she turns up when someone is unwell, and is seen to be doing, i know that sounds unfair but its true! my hubby and i could hardly keep a straight face when she then visited me!!!!
I hope your painkillers kick in and tomoro you wont need to wish for RA stuff. And remember we feel like your friends here.
Hi Allannah - this "friend" does the same thing - always turns up if someone is in hospital, runs around visiting people who are ill (but not me) and generally does it all in a glare of publicity so she looks good and people will say how kind and thoughtful she is - not! LL
lol, yes she is the same and i think its just so she gets attention!! I know that sounds bitchy but its not!
I think they are not really friends and I've kind of not been available recently unless I cant get out of it and i think she is getting the message and not calling me so much. and my hubby always said she was just pretending...he has better insight than me. So they are not worth the effort to bother about, but i think you are too nice to say get lost!!!!!!
Ahh changed my mind just read about xmas time...good for you!!! And if you want a good bitch you know where i am!! lol Axx
So sorry to hear ( late) about your troubles. I've noticed you haven't done the regular report from the castle and I wondered if something was up. I hope at least one or two of your wishes will come true. Those lost pounds will help, can you put the pleasure of that achievement in your back pocket and get it out to admire from time to time. As fir that friend Id just quietly drop her she sounds like a waste of time. The art sounds lovely a good way to spend special time with yourself
Thank you all. I had a better night last night and slept through until 5.45 and then went back to sleep until 7.25. Hubby was coughing well at 7 p.m. so I suppose I gradually began to surface then. Still very tired so will have a quiet day today and perhaps do some painting. I do have a picture I need to finish off - it has been trying to find the time recently!.
Cathie, the castle is looking a bit shabby - could do with getting in a painter and decorator but I am doing the garden again which is looking good. Bought two ornamental conifers for the tubs outside the castle gate - they are a beautiful goldeny green and won't grow too tall. Also a new Rhododendron in a really vivid red which will stay in a tub on the terrace. The Gardener is coming this afternoon so will get him to put it into one of the terracotta tubs.,
I planted out my primroses into tubs at the weekend - they are sharing with the miniature daffodils and do look lovely.
The bells are being removed at Anmer Church so will pop over there to see how they are getting on. Still waiting to hear about the lottery grant but should get an answer by the end of the month.
Have decided overnight that I will not contact that "friend" again - if she wants to contact me that's fine but I am not going to put myself out for her and will now not include her in anything we are doing. We didn't at Xmas as we were invited out to good friends for Xmas Day but she did come on Boxing Day with some other friends. There are 6 of us who take it in turns to do New Year and this last year my friend Diane was the hostess. If my cousin had been staying she would have been welcome to come but the "friend" wasn't invited. Obviously others see more than I do.
Thank you all again for your support. Will blog more from the castle in due time when I feel up to it. Much love LavendarLady x
Sorry must be another time slip. Forgot to say my shoulders still painful but see the physio tomorrow so will see what she says. Tried Hubby's muscle rub last night- stank the bedroom out - smells like the old wintergreen our parents used. Even Senior Labrador turned up her nose and I eventually had to go into the bathroom to scrub some of it off! LL x
Just had my MTX - shoulders feel a little easier. The lovely driver who delivers my Enbrel has just been as well. He is so cheerful - makes me feel ashamed. He is up at 5 a.m. and on the road at 6 a.m. to do his deliveries.
Just put some washing on, emptied the bins, cleaned up after junior labrador Berry, dishwasher on as forgot to do it last night and it is full (I only put it on every 2/3 nights when it is loaded up). So think I will take it easy today. Have to get the rest of the washing on as well ready for Tracy to iron when she comes in on Friday.
Can't get to see the bells removed because of the Enbrel delivery. The Foundry people arrived at 8 a.m. so would not have been able to get there and back in time to be here for my delivery. LL x
Dear Lavender so sorry to hear about your troubles, and im sorry your friend isnt more supportive too x
My heart goes out to you LavenderLady my symptoms are no way in the league of yours, you seem a caring and thoughtful persons in spite of all your troubles, you don't need friends who bring negativity and uncaring vibes into your life.
It is encouraging to talk to people like yourself. I have only just started to write on this blog, and have felt comfort already.I have been diagnosed for 10 yrs there have been times when i have felt very lonely with RA i have a wonderful family and husband and 3 lovely Grandkids, but as i have always been the hub of the family always ready for a night out or get togethers.
They don't seem to understand that i need to slow down sometimes and think i am just being miserable. My friend has just text me this morning asking me to go into town for a drink and lunch. I said i couldn't i was busy my Hubby said why don't you go it may make you feel better. grrrrrrrrr!!!!! see what i mean he knows i am in the middle of flare up. Other than having a badge saying TAKE NOTE HAVING A FLARE UP NOT IN FULL WORKING ORDER ha ha ha what can we do.take care (( LavenderLady )) gentle cuddle Ladybird x
HiLadybird, lovely to hear from you. I'm afraid hubs can sometimes be a bit insensitive. Mine is lovely most of the time, but does come out with the odd thing which is designed to make me feel better and I end up feeling worse when I am tired, irritable and in pain,. Came down this morning to find senior lab had been sick on the lower landing, cat had been sick in the sitting room so had to get that cleaned up first thing.
My lovely daily came today and has done all the ironing, washed the floors and generally hoovered and dusted round.
The "friend" I referred to above, turned up last Saturday morning with an Easter present - she hadn't been near for weeks and after the fiasco of the theatre visit which we all thoroughly enjoyed, I was not going to contact her. so had to dash out to get her an easter egg! She invited me round last Wednesday for some tea but I had to switch that around as the skip people were coming to collect the skip and I had to be in to pay them. She kept referring to some new things in her house and I said "well you haven't suggested I come round to yours for months so I don't know what you have or haven't!." She never once asked how I was but I was treated to all the trials and tribulations of her family instead.
The theatre trip was brilliant - we laughed so much and the theatre was packed out. The trip on the bus was great - everyone sitting together and talking nineteen to the dozen. The friend doesn't know what she missed! She has hardly mentioned it other than to ask if the play was good! So I laid it on really thick. Hubs came to meet me and my friend Judith off the bus at a quarter to midnight!
Had some good news, we have the lottery grant for the bells- I heard a few days ago so it is now all systems go to get the exhibitions up and running, get the bells put back into the bell tower and prepare for the Jubilee weekend.
Ladybird, all you can do in a flare is rest as much as you can. Take care, Hugs, LavendarLady x
Hi LavenderLady glad you enjoyed the theatre and the trip on bus with your friends you can't beat a girly day out, Yes i know what you mean about hubbies they mean well their hearts are in the right place. I wouldn't swap mine for the world, i suppose its hard for them to get it right all the time.. I am starting to feel a bit better this afternoon i have a load of ironing to do but its going to wait another day, going out with hubby for tea. Its nice to hear you have had good news about the bells it obviously is important to you. (( )) x Ladybird
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hope your feeling better soon x
Hi I am currently off meds awaiting to see Biologics team for for first time 13th June. Previously on MTX then Leuflomide, but had to stop 
