Friday night blues

Hi peeps....I just feel I want to let it all out...on this Friday night feeling down in the dumplings. My eye has an ulcer on the cornea ouch ouch so im on lots of antibiotics eye drops steriod drops...not my first ulcer not my last...my tongue is covered in ulcers too...I'm on no gold injections as yet on hold as they had to be stopped over Christmas as I was poorly...waiting on consultant appointment...maybe start me on fortnightly injections as weekly injections were wiping me out...my iron levels are back to normal...hooray...but oh my this feeling of exhaustion is really bad...I'm fed up with of always feeling tired...wish there was something I could take just to give me a little energy...hope you all having a relaxed chilled out Friday night....sorry to sound doom and gloom but I'm fed up with my own moan so wanted to share it with you...big hugs Nicola x

29 Replies

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  • I am so sorry you are suffering so. Can i send you gentle hugs & love. This is such a horrid disease. Love Alison xx

  • Hi Alison thank you sending you hugs too...hopefully I feel in a better mood tomm xxx

  • Hi, oh I'm sorry you are feeling so low..these drugs and this complaint is so nasty..I really wish you some respite soon and moan all you like!! Maryx

  • Thanks Mary hope tomm I'm in a better mood big hugs to you xxx

  • Ouch corneal ulcers are nasty. So follow the eye drop regime and test . Did the ophthalmologist discuss this with ypur rheumatologist? Have a restful Friday , even if it's boring lol xx

  • Thanks allanah yeah it's all on my notes about my eyes so rheumatologist knows??? Big hugs xxx

  • Thanks again hope your ok sending hugs to you xxx

  • Oh poor you this disease truly is rotten. Sending you a hug and hope you feel brighter soon. Moan as much as you want if it helps go for it xxx

  • Thanks I do think a good moan helps and even more so to you wonderful understanding people who support me....xxxx

  • Gosh, that sounds painful! Big hug coming your way....very gentle tho! Pain in eye is like pain in teeth....not much you can do to help it....can't really put hot water bottle on it. Lol. I had moan the other day and it does make you feel better as only fellow sufferers can under stand. Hang in there. Anne

  • I can just imagine how painful the ulcer must feel having had a lot of discomfort with my own eyes recently. I too am always in bed just now - either to sleep or to keep warm so I understand about the fatigue too. Poor you - hope things improve for you very soon. Tx

  • Thanks tilda it means a lot..there are so many things go wrong we just have to put up with it...out of our hands big hugs to you xxx

  • Thanks Anne for reply....it does make me feel better posting on here as people like yourselves who suffer understand....and give support means a lot :-)

  • sorry you're feeling down , hope you feel a bit brighter soon. this thing's rubbish isn't it, take care x

  • Thanks Julie for kind reply. I try to stay positive but sometimes moods get in the way as well as this horrid disease and we have a right to moan and feel down big hugs Nicola xxx

  • I found that when I couldn't post questions or posts here for a while I moaned to my family and friends instead and that's not a good idea unless you want to be faced with shrugs or incredulity! Just put it here and at least someone will usually know what you are on about. - Its scary having things go wrong with eyes. X

  • So true sometimes and when friends and family ask how I am I say I'm fine when really I'm not...and it's only because I get sick of mentioning my different complicated health problems...I get fed up with myself...sometimes I just want to hide away...and really I love life and I have the most lovely caring family two very supportive sons and even my sons girlfriend bless listens to my moans...anyways we can't be positive all the time...I popped into see my optician today as he likes me to keep him up todate with my eyes and he said I must always have my eyes checked out as they are severely chronic damaged with scarring of reoccurring ulcers and there's no cure to this ongoing condition.. And it's serious also our eyes are precious...anyway the little monster is still there but it's only a week and I'm still on antibiotics to dissolve it.....thanks for listening to me take care big hugs too xxx

  • I really feel for you. My optician told me I was really lucky so far not to have had any corneal damage and told me that I would need drops about hourly for the rest of my life. I get paranoid when I forget them now. It makes me feel even more tired having this tight dry sensation in my eyes so it must be far worse for you - sounds so aggressive. I'm sure they will get the ulcer under control for you even if it takes a while. I hope you have a happier Saturday night. X

  • It can be awkward at times putting all these drops in but it's a way of life have to get use to it...also wash your eyelids every morning and every night with sterile water cotton pads or buds...just to keep eyes clean...I love wearing eye makeup which I can't now...eyes are so bare...but eyes more important...thank you I'm going relax and try to chill out :-) xxx :-) :-)

  • I can't bear not wearing any make up because my eyelashes and brows are almost white. I had my lashes dyed a few weeks ago on my birthday and she really cleaned them thoroughly first and then made me lie with cool pads ( boiled water) on while the tint took. For about three days afterwards my eyes were so much better. GP told me to clean often using baby shampoo and boiled water. I did this and it does work but finding time is another matter! X

  • Hi I use to get my lashes tinted years ago...nice having things to make us feel nice...I have this daloube cream to put in eyes on a nighttime and its that thick you can't see...however it does work...when I'm asleep...no good me posting during the night as I can't see...thanks again :-) xxxx

  • I use one like that too - mine is called Lacra Lube ointment (preservative free). Can't see a thing after I've used it either. My husband wears a snore brace and I use ear plugs to block out the residual snores! 25 years of married life has come to this?! X

  • Hehe I know the things we have to do bless....I've also heard of your ointment good its preservative free....especially when your using it every night..me and you would be no good posting when we have these drops in.....hehe...take care xxxx

  • Yes sweet dreams tonight Nicola - eyes, ears, mouths, joints the lot. Xx

  • Sending you big hugs keep cosy thanks again....:-)

  • Ooooo Nicola, I feel for you. It sounds absolute misery. How are you today? Judy x

  • Hi judy thank you for reply...I'm a little better...but the ulcer is taking a while to heal...then your left with scarring...but I'm around the clock with all different eye drops...hope you are ok xxx

  • Ouchy you have my sympathy, I had similar trouble with my eyes last Feb/March when I had to have surgery first eye was fine second eye eeeek it hurt so much turned out it was an ulcer on cornea I do hope you heal quickly, the only tip I have is when it was really sore and scratchy lying down with eyes closed and slices of cold cucumber on my lids it seemed to cool things down and sooth them a bit, hope you feel better soon

    Jen x

  • Hi Jen thank you for your reply..bless you've had surgery...these ulcers are painful the trouble is every time I get one they leave scarring luckily its not on my vision...scary as our eyes are precious....thanks for advice...tc Nicola xxx

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