Ok i am in a complete nightmare and i hate my life right now and i just need to vent and get some support from you guys....
As most of you know i am due to have some major foot and ankle surgery this March. This in itself is bad enough as even if it goes well (touch wood, don't walk under ladders, cross fingers etc...) which it will of course, i will still be looking at 6 months before i get my life back on track, which i will of course (except with new better feet).
As most of you i am sure will agree one of the worst things about this illness is that we can rarely plan and regularily have to let people down at the last moment and cancel plans....
Andy (my handsome and wondeful new husband) came up with the idea that we should go on our belated honeymoon (we couldn't afford it then) before my operations begin so that we can have a great time and I can hold some wonderful memories during the hard times of the op... such a thoughtful and beautiful idea - truely romantic (one of those reasons i married him ;-).... The departure date (to Marbella) is fast approaching (fri 27th... this friday!!!!!!). All very exciting and up until last Thursday i couldn't wait...........
On Friday morning i got up at 7am (having been up with terrible back pain most of the night) and felt crap.... i made a emergency appointment with the GP and went 2 hrs later... seems i had a urine infection, not nice, felt so bad and poorly, he put me on anti b's, over the weekend i slowly began to pick up ;-), on sat night i thought to myself "it's ok you can still go", I woke up on sunday at 8am unable to raise myself out of bed, my whole body had gone into flare, couldn't turn my head, could bearly walk, could barely get my hand to my mouth to take my tablets!... freak out..... with a combo of morphine lozenges, a lot of love, and rest after rest after rest, i woke up yesterday afternoon and for the first time since Thursday evening thought "ok i could still be well enough, i might even get my Enbrel in my on thurday as my infection seems to have subsided and my joints sooo need it and my flare is slowly recovering on a hourly basis", i even re-began practicing my spanish!!! Honeymoon nearly saved????... ok woke up this morning again feeling slightly less painful and no hurting kidneys;-), by 10 am i began sniffing, by 2pm i began loosing hope, now (6pm) i feel as though i am st the beginging of a COLD!!!!!, whilst i know a cold isn't the end of the world, it is all the things that go with it, and indeed the worry of whether to inject enbrel or not on thursday, bad joints etc..... and now it feels as though my honeymoon, my husbands happyness, the hope i could carry throughout my surgery and in fact EVERYTHING is all sliping away from me...... I hate myself and i am sure that someone out there (or up there must hate me too... why? why? why all of this?? why can't my life be better? why do i either have to cancel things or do them with such difficulty? why can't anything ever just not be hard work with me?
Sorry to add.... surely having a honeymoon is a basic human right? Surley not having to live our lives like this is a basic human right? I then i think of all those people who are so much worse off than me, some people who live in africa, people in afganistan, people with much worse health problems than arthritis, people who have or will never meet someone to just spend sometime with let alone marry and have a honeymoon........ i then i feel really shit and selfish and spoilt.
Oh life is definatley not treating you so good at the moment. At least you have ahusband who understands that is so important. Take heart, lifes little upsets have a funy way of sorting out.
I hope the operation goes well. All will work out and you definatly need to stock up on suntan lotion sounds like the best medicene of all
Ella, go on your honeymoon,it will do you good my friend. When things go bad it is how we see things getting worse,even when people in other places are worse of than us,but it doesn't help you does it. I understand your feeling of hopelessness,will it ever get better,yes it will ella. My theory on this disease is god only gives us what he knows we can cope with. Yes there are days when i even question that theory. Your a very strong woman ella don't let this b"""""d disease get the better of you girl. Go on your honeymoon,enjoy it between the sniffles,the warmth might help you and cheer you up.
Sorry you're feeling so rough at the moment.Yes i would go if you possibly can,your husband sounds very caring and will understand if you are limited in what you can do.As you say the memories will keep you going in the next few months.As for feeling guilty i think we all moan about our lot but we all seem to cope somehow.Yes we all know it's not the worst thing to have but it doesn't matter when you're in pain.Go.have a wonderful time and don't forget to post some pics when you come back!
He does sound like a wonderful husband even to think of a pre-op honeymoon. If you can manage to stagger onto the plane it might do you a world of good to be somewhere with better weather, no cleaning & cooking and some quiet time together. The airports are usually fantastic now since the Disability Act has made them provide a service and have wheelchairs on tap, and someone to push you along and get you on & off plane. So I'd give the disabled passenger support a ring & book yourself on if you haven't already. When we used it the person with wheelchair met us at the car stop off, and accompanied us the whole way. And then there was someone the other end too. Go and have a great rest. Px
Yes I agree with everyone - try and go whatever because it will probably be all the better for being so hard won. If you find that you really can't go at the last possible minute then you still have a lovely new husband who had the thought and imagination to plan such a thing. Don't feel guilty whatever the outcome - you can't feel guilty about having RA, a urine infection and a cold - you didn't ask for them did you?! TTx
You go girl.. your antibiotics will kick in, the rest and heat (if its warm) will help. You can have nice massages and YOU time together. Take plenty of lozenges and vitaminC!!!! and most of all Enjoy yourself, things can only get better!!
Axx
Absolutely go, Ella, relax on the plane, let the airport folks escort you and have a wonderful memorable time.
Having a cold will not interfere with your injection. Only if you had an active chest infection, so you should be good to go and have a great time.
oh my gosh poor you!! how are you feeling today?
I had a urine infection and was given anti b's few weeks ago but still took my MTX and enbrel and no flare thankfully, so not fair for you Ella! I'll kick something (maybe a pillow) on your behalf!
Wiliby yes please do cos i'm too sore at the moment, i usually find a pillow does the trick
Well today hasn't been too bad really so far, i am feeling quite a bit better and so far the cold is just a head cold. I was just moaning last night as everything feels so hard sometimes and we all seem to have things to worry about that others don't. I should just be thinking about which clothes to pack and will i need sun tan cream at 18 degrees?? etc....
As for the whole to enbrel or not to enbrel question..... I am so confused, i never know when i should do it or when not to risk it?? it seems that every health care professional i meet says something different. My consultant says inject unless you have a obviously green weeping infected gunk coming out if somewhere lol... what have you all been told? Wiliby you injected when you had a urine infection (well nearly gone) ?? I think i might be doing it wrong, as i'm constanly stopping it for any unwellness and then my body keeps flareing as it doen't have a mainatained level in it.
It's quite a debate, RA nurse tells me to stop, doctor tells me to carry on, so asked pharmacist and she tells me to carry on also! when I posted the question about whether we flare with infections it appeared to me that most (but not all) that did carry on didn't flare on anti-b's, but not sure if I should be saying that!!
Hoping your even better today, are you packed yet? seeing as your on honeymoon, hope you don't mind me saying, take some thrush cream with you, after the anti-bs you may very well need it!!
Today is the day i am due to inject. I am no clearer really on whether to inject but i thing on balance i will, my cold never appeared properly, wee infection feels completely gone, but just to throw spanner in the works, had my sample from tuesday back and it says "no significant growth, but 30-40 white cells", this could mean so many things, including infection not completely gone ;-( but i could be analysing too much also. If i do the to inject v not to inject list, the not to inject list is far bigger with negatives and the one thing that would royally fu** up my honeymoon is if i was in massive pain and couldn't do anything. At the end of the day at worst it will bring back the infection, if it does, i have taken anti b's with me to take if needed??!!!!?? Oh i HATE these decisions we have to make ;-(
Hi Ella, really feel for you! Dont let RA win- you go. Sort a good book to take and demand extra cuddles from that lovely man of yours.
I was in spain last week and the weather was lovely. You will need suncream as don't forget a lot of our drugs make us more photosensitive.I have treated myself to clinique city block for my face, its factor 40, a bit expensive but worth it and lasts for ages and easy to carry around- have a look in the airport shop!
I would just listen to your consultant advice about your injections- sounds like you will prob be ok to have it.
Have a lovely time, relax, and come back refreshed ready for your op.
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