Struggling to get my head around everything!
lozzC
Member Posts: 27
I am really struggling to get my head a round everything at the moment!
Last week was diagnosis week and it seemed to set off the worst exhaustion and pain I have experienced with this whole... pants RA rubbish....
I am struggling to get my head a round the diagnosis still and I am defiantly in denial... hoping if I try and keep as much as I can 'normal' that it will just go away.
But I can't believe how fast this RA has hit me.... a year ago I was playing rugby.... 7 months ago I was swimming and cannoning and running and going hiking and now I struggle to get up the stairs, I can't open the squash bottle... I can't get more than about an hours sleep yet I can't stay sitting on the sofa past about 7 because of pain.
I haven't seen my parents since easter holidays and went back for a visit this weekend and they couldn't believe the change in me... EVEN though I was trying to hide as much as I could from them (I feel guilty that they are as shellshocked as I am) and it really hit home how so much has changed so quickly
I am starting the meth this weekend, I picked up my tablets today and I must have bought half of the pharmacy home with me.... and just getting my head around what to take when and how long to leave things in between is daunting. It doesn't help that the OH is away for work this week he normally deals with anything complicated!!
I have gone part time at work as of September to give me a bit more time to get meds sorted. I am a teacher and being knocked all day is so painful and the exhaustion of controlling 30kids every day is far too much for me to cope with at the moment.... I have a short fuse with them and its not their fault... and its very unlike me! But now we have money to worry about too because it's a bit pay cut...
On top of all this all this stupid rain has flooded my house!!!! :roll:
I hate moaning.... I am never this person, I am normally happy go lucky laid back... but ... I guess I just want to know it gets better!
Lozz xxx
Last week was diagnosis week and it seemed to set off the worst exhaustion and pain I have experienced with this whole... pants RA rubbish....
I am struggling to get my head a round the diagnosis still and I am defiantly in denial... hoping if I try and keep as much as I can 'normal' that it will just go away.
But I can't believe how fast this RA has hit me.... a year ago I was playing rugby.... 7 months ago I was swimming and cannoning and running and going hiking and now I struggle to get up the stairs, I can't open the squash bottle... I can't get more than about an hours sleep yet I can't stay sitting on the sofa past about 7 because of pain.
I haven't seen my parents since easter holidays and went back for a visit this weekend and they couldn't believe the change in me... EVEN though I was trying to hide as much as I could from them (I feel guilty that they are as shellshocked as I am) and it really hit home how so much has changed so quickly
I am starting the meth this weekend, I picked up my tablets today and I must have bought half of the pharmacy home with me.... and just getting my head around what to take when and how long to leave things in between is daunting. It doesn't help that the OH is away for work this week he normally deals with anything complicated!!
I have gone part time at work as of September to give me a bit more time to get meds sorted. I am a teacher and being knocked all day is so painful and the exhaustion of controlling 30kids every day is far too much for me to cope with at the moment.... I have a short fuse with them and its not their fault... and its very unlike me! But now we have money to worry about too because it's a bit pay cut...
On top of all this all this stupid rain has flooded my house!!!! :roll:
I hate moaning.... I am never this person, I am normally happy go lucky laid back... but ... I guess I just want to know it gets better!
Lozz xxx
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Comments
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It does get better, LozzC though, admittedly, it also gets worse. I'd be very surprised if you ever got to play rugby again but there will be peaks and troughs and, untill you get established on meds that work for you, it's a trough, I'm afraid.
I hope the meds work quickly though that doesn't always happen. I've been on meth for over 10 years and I'm fine with it. The real, happy-go-lucky, laid back Lozz is still in there and will re-surface. This whole thing is a very steep learning curve.If at first you don't succeed, then skydiving definitely isn't for you.
Steven Wright0 -
hi first off it is a shock and yes the meds are not easy to sort but they can help a lot who knows how well you will be when they kick in some people go into remision so hold on there all is not lost it does take a while for them to start to work and you sometimes have to try more than one type of med. you will get your head around it you will fight it all the way (we all do) valval0
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It can get better just dont expect to much to soon, your happy go lucky will return and eventually the meds you recieve will help you, its a case of finding the one that works for you. Mine cam,e on rapidly to although its some years ago now. Its amazing how much of your life it effects. Take Care
ColinWHEN GOD GIVES YOU LEMONS MAKE LEMONADE0 -
I think I know exactly how you are feeling as I'm in a similar boat as you right now.
My knees started hurting at around Feburary time and they just kept getting more and more painful.
I found I was struggling a lot more, I couldn't get down stairs easily. Standing up caused great pain.
I started using a very potent ointment that was prescribed for my bad foot, but it does nothing for my foot. I tried it on my knees when they were particularly red and angry looking and it does help a bit. So I carried on with that for a short time.
When I couldn't get oput of a standard waiting room chair and needed someone to help me up, then I decided that it was time I spoke to my GP about it and that it wasn't going to go away.
That was in June, just a few weeks ago. I showed him my knees and he did some tests and ruled out RA, but said it looked like it was arthritis and I was reffered instantly to a Rheumatologist.
Shortly after that GP appointment my hips began to hurt. And now they are rapidly worsening. To a point that no matter what I do, I am in pain!
I don't have a diagnosis yet, and I'm aware that it could take some time, but my knees look awful if I have been doing things or kept them bent for a while. Bright orange, burning, swollen, pain. There are also faint patches around the knees that look like bruises, turning black. My GP says that this discolouration is the pigmant of the skin actually changing colour and it will be permenant. Reasons, I don't know, but possibly something to do with the inflammation?
But it is horrid at how fast it has left me the way I am now. In Feburary, it was just a bit of pain when I got down on my knees for any reason, which wasn't hugely alarming to me, but now I can't get in and out of a standard chair, and my armchair has pillows on it to raise it up, I cannot sit, stand, lie down for too long at a time or else I hurt, but I also can't keep moving much either as that makes it really bad. I'm more run-down than usual and if I'm having a bad day all my musles hurt, like I have a flu!
My partner has RA, and he suffers greatly from it. Some of my symptoms are rather similar to his. It's rather frightening to be honest. The thought of how bad will I be further down the line?
I also have a couple other problems in my life at the moment that I'm struggling to get my head around and I'm finding it quite difficult to come to terms with it. A year ago, I could just get up and do what I want/need to do, but now my problems are extended by the fact that I am unable to do some things and that I need to plan very carefully before I do things so as not to exhaust and hurt myself.
A difficult thing indeed.
But these forums are great. And they have been of help to me. Everyone seems to understand very well how everyone feels and there seems to be a strong empathetic connection which is sometimes just is what is needed.
I sure you will come to terms with it though. Just as I will. It will take some time, but I do know how scary it is with the speed it seems to attack you. But all we can do is fight or accept. Fighting the disease so it doesn't ruin our lives is a very good thing. Fighting to keep yourself able and keeping your mind fit. Accepting that you have the disease is also equally important, if not more so! Accepting that there will be some things you wont be able to do anymore, or have to pace yourself and slow yourself down.
Both are a difficult thing. But it can be done. All the lovely members here are proof of this!
However, fighting to keep going and not stop or slow down is the wrong sort of battle to take on. And equally, accepting that you are ill and that is that, and refuse to do anything, is also a very bad way around it. My partner seems to do both of these things and he has arthur for over 4 years. I've tried my best with him, but I can no longer help him as he refuses to help himself. He is the evidence that these sorts of attitudes are the wrong way to go about it and I see it first hand all the time. So it makes me even more positive to find the right way around it to deal with it.
All of us on here can travel this road together.
Much love. xxLife is just a ride. Up and down, round and around, thrills and chills, very brightly coloured and very loud. But don't ever be afraid, because it is just a ride.0 -
Hi Lozz
You are doing the right thing by getting it all on here, dont apologise for moaning you are not it just a release thing and it will help.
You will go though all sorts of feelings, but you will get there,so carry on talking to us lot.
I really do wish you well with the treatment, and has for the flooding, that is awful on top of everything...this blinking weather has never let up...sorry Im having a rant there....you take care , and I hope you have someone to help clear up.xxLove
Barbara0 -
Much sympathy. I too used to be very active until pain made me grind to a halt. However you will find that, as you learn your limits, you cab find things that you can do which make you happy. You will still miss your old life but you will also move on.in a way. For me, I have discovered wheelchair basketball which is giving me the buzz I missed since giving up judo and rock climbing.
This forum is brilliant for offloading all the emotions and getting tips on how to improve things. I hope your medication helpsTwenty-something mother, home educating my wonderful son and currently TTC.
My particular flavour of arthritis is yet to be confirmed0 -
ah lozz, it really is miserable when you first get a dx, i like you hoped i would just wake up one day and the ra would be gone! that was 8 years ago and yes its still here- flaring with avengence since having baby so am pretty peeeed off with it too.
However when i was first dx and started mtx it was great after 3 months i felt almost normal again and started riding again, i have had 7 good years and was still riding my horse-jumping etc til i had baby last year so chin up you may well get back to sports once things settle its just at the mo you;re in the worst bit, it takes time to adjust to having ra and yes you have to alter life a bit to cope but you can and will cope - we're still all here moaning about it!
Am so sorry you;re flooded my parents were in 2007 and its miserable but hey that will all get sorted in time- there is a national flood forum thats great for support etc so maybe look them up online.
keep fighting! xx0 -
I showed him my knees and he did some tests and ruled out RA, but said it looked like it was arthritis and I was reffered instantly to a Rheumatologist.0
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Hi Lozz, I'm sorry your having to deal with so much crappy stuff at once, I hope you will start to see better days soon. Big (((HUGS))).0
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ishui0608 wrote:I showed him my knees and he did some tests and ruled out RA, but said it looked like it was arthritis and I was reffered instantly to a Rheumatologist.
Two peas in a pod here!
Hope the process is quick and get a diagnosis soon. I'm waiting on an ultrasound appointment to look for inflamation in my knees.Life is just a ride. Up and down, round and around, thrills and chills, very brightly coloured and very loud. But don't ever be afraid, because it is just a ride.0 -
Oh Lozz my heart goes out. Good luck. Shock is the way you get through the first bit and then you pick up the challenge and as a rugby playing sportswoman, you will, one day find a way to deal with it all.
I had to give up loads of outdoor pursuits, I was a regular bushtucker type spending all my weekends doing dangerous and great fun things, I was gutted and didn't stop being gutted when my arthritis took those away from me. It took me over ten years to get there but I never lost sight of picking one activity up largely because it was deemed far too inappropriate. After discussions with my Consultant and promises at being very very careful I finally started rock climbing again just under 12 months ago. I am absolutely crap but that doesn't matter, it is about being able to finally have a go and nothing more! I don't do it very often but I do do it and that is all that matters. I save up thrilling moments for when I cannot do those things and I play them back in my head whilst lying in bed trying not to cry because that is what keeps me focused on the fact that it will and does get better from its worst.
Meth gave me a new lease and made life much better, I went through a few on the menu to get to it but like a regular Goldilocks when it came it was just right and 5 years later I am back to climbing - it can be done you just have to be flexible as to the definitions and approach to how it could be done and to have expectations that possibly don't include me climbing Everest/ you playing for St Helens.
Lots of love and look after yourself xxHey little fighter, things will get brighter0 -
Thanks guys!
I actually had to give up the rugby due to having my wrist pinned back together so I had come to terms with no playing anymore... much to the mother and boyfriends relief!
The hardest thing I am coping with at the moment is going from being so active to struggling to finish a work day and climbing up the stairs! But all you wonderful people really are making the future look much more positive!
I started my Mtx on Friday night.... It has been an assault on my body! I am a BIG food lover... I drive the OH up the wall I am always cooking/eating/watching food... and I have completely gone off food.
I have been sick... I feel queezy all the time.... Just the smell of food makes my stomach turn... I also slept pretty much the whole next day after taking them. I also have red itchy rash on my neck (although could be unrelated...)
I know it is different for everyone... but does your body get used to this? Or do you just get used to the side affects? My meds are being controlled by my GP, he says just a phone call after my blood tests will be fine...
From reading posts people seem to have rhummy nurses? Should I be asking for one?
Thank you to all of you lovely people who have replied to my little rant! I am in a much better place than I was. Still struggling to get my head around the RA... and the house smells.... but I applied for a part time teaching post and got it last week so things are looking up!!
Lozz xx0 -
Lozz, I really hate to be a party pooper but one of the things that should be checked out with meth is a rash. It is important. It can be a sign of a problem. Usually we meth people would ring our rheumatology helpline and get a rheumatology nurse at the end of it. Usually people on meth do have a rheumatology helpline and also a little book in which their blood test results are recorded (and which gives this info). If you don’t have these, please contact your GP. It’s probably nothing but it does need checking and preferably fairly quickly.If at first you don't succeed, then skydiving definitely isn't for you.
Steven Wright0 -
Thank you!
I will ring first thing in the morning... I didn't want to seem like I was over reacting and it hasn't spread or got any worse!
Thought you guys on here would be a safe bet to see if I was over exaggerating or not!
My consultant and GP have spoken quite a few times now and I have seen the letters they have sent but some things do seem a little... unorganised from reading peoples posts! When I was getting my meds last week I felt I was telling my GP somethings....0 -
I'm sorry if I've missed a post, it's not easy checking back the whole thread as I'm using my mobile.
Are you not under a rhuematology then? I know when I first was paced under their care they introduced me to the nurse and gave her the number..
I didn't know that GP's prescribed meth. Lol
I really hope things calm down for you and it works wonders too.
I'm on sulfasalazine at the minute and I'm like you with the food thing. Most of the time I really can't face food at all. I've lost three stone with it and I think meth is going to be added soon. Christ, I'll be like a rake lol..
At the minute I can still afford a few pounds off but not much more lol..
The very best if luck with everything, keep us up to date.
Me-Tony
Ra-1996 -2013 RIP...
Cleo - 1996 to 2011. RIP0 -
I am under a rheumatologist too but she has instructed my GP with meds and is controlling it that way...
Not sure if it's because I am quite rural? My nearest hospital is an hour away and my GP's is the biggest medical center/mini A&E department....
After being on lots of Steroids for a long time going off food won't do me any harm for a bit tbh!!! But eating is still a joy I could take part in without too much extra discomfort
Is is common for people to have the meth and the sulfasalazine together?
Perhaps the two will cancel each other out and food will be back on the menu!
x0 -
there are a few on here that have had a combo of either sulfa and meth or hydroxy and meth.
I was on hydroxychloroquine first but all that did was make my appetite dissapear, with the sulfa I've at least had some relief lol.
you're probably right about the rural thing. it's better than trailing an hour to the hospital for each appointment eh?
Best of luck with things anyway
Maybe you're right and the two will have me piling weight back on
LolMe-Tony
Ra-1996 -2013 RIP...
Cleo - 1996 to 2011. RIP0 -
lozzC wrote:I am under a rheumatologist too but she has instructed my GP with meds and is controlling it that way...
That's the usual way, Lozz. The GP writes the prescription but the rheumatologist tells him what to write it for.If at first you don't succeed, then skydiving definitely isn't for you.
Steven Wright0
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