Back Again

MrsSparrow

Hi all,

been a bad couple of weeks for me, very busy with end of year stuff for the children and not much sleep as my son's out of whack with his routine .

Got my MRI scan at 1 tomorrow and feeling very scared, have tried talking about it to my friends but no one seems to understand how much of a big deal it is to me, been getting the comment "its probably osteoarthritis its nothing serious"

Feel like i've been making a big fuss about nothing and been so tired i can barely function, the pain has been almost unbearable, had my daughters swimming gala on wednesday for 3 hours, no seating, spent most of it hanging on the wall in sunglasses trying to hide my tears, didn't want to make a scene for her big day.

so tired of feeling selfish

sorry for the rant

Kate
x

valval

firstly people who do not have arther are stupid half the time they have no idea what it like to move as if in diveing boots every step an effort i do not know how you managed to stand all that time you must be so brave to have managed it.
what ever arther you have it takes a lot out of you mentaly as well as physical will be with you in thought for you scan do hope you get the answers you want and meds that help you cope better and gives you a better quality of life val

stickywicket

Kate, you are, most definitely NOT being selfish. You are being worried about how you will cope with all this both for yourself and your children. That's being normal and sensible. It has to be faced and you are facing it. Well done.

Of course you are worried about tomorrow's scan as so much seems to depend on it although you probably don't know what you'd prefer it to show. The uncertainty is very hard to deal with. As for people not understanding - you're right. They don't. Especially when you look OK. They can understand cancer being a big deal ie something that potentially kills you, but something that you just have to live with is a different matter. I hope you will, in time, find some good, genuine friends who really want to understand. They are priceless.

I think we've all probably done the leaning on the wall thing, or something similar. I can't really offer an answer there. I still do absolutely stupid things which hurt a lot because......well, all sorts of reasons really - sometimes because, like you, I don't want to let someone down; sometimes because I'm too proud to ask for help; sometimes because, once in a situation it can be hard to get out of it. You will learn coping strategies as you go on (a folding chair?) and not to care so much if you stick out like a sore thumb.

I will be thinking of you tomorrow. Please let us know how it goes.

hileena111

Hi Kate
Like Sticky....I dont know how you managed to stnd for so long...thank goodness for sun glasses...I certainly would have needed them
You are not being selfish....you have to be in the best possible health you can be to cope with your family......You'll learn coping strategies as you go along and getting started on a decent pain reflief system is about the first place to get started.
So after you have this MRI, they decide what it is....... oA or RA or one of the other numerous ones ??????at least then you know what you are dealing with and how to cope with it. As will your doc....who are you seeing...GP/Orthopaedic/rheumy
The OTHER people.....well unless they have some form of arthritis they dont understand it...even our nearest and dearest who are very supportive still cant really understand.....thats why this forum is so good....we all understand .....some more than others {depending on what you've got}...so dont forget to come on here anytime......its been a lifeline for me.
I'll be thinking about you today when you have your MRI
Love
Hileena

tillytop

Hi Kate

I can't think of anything to add to what the others have said but I will be thinking of you when you go for your scan today. Hope you don't have to wait to long for your results and hope that, when you do get the results, you will get some answers as to what's going on and, hopefully, what can be done to help.

Will be sending lots of calming vibes at 1 today.

Love Tilly xxx

barbara12

Hi Kate
The others have said it all really, but we are always here for you to talk and best of all have a good rant.
I have not long had my MRI, so I can understand your fears, for one I am terrified of closed spaces, but I have broken that fear now.
You will worry about the results and like you say people think oh she just has Arthur, to be honest I was the same till I got it myself and came on here, to see how it can effect people it really opened my eyes,I will be thinking about you...and good luck with everything
Love
Barbara

nanasue

Hi there, just wanted to say I agree with all the other posts, it is hard at the beginning and other people don't understand, even family, I had a real problem with one of my daughters at the start but she's more supportive now. I hope everyhting goes well for you and you get some answeres and pain relief. Like you I didn't used to like to make a fuss but now if I have to use a fold up chair or a stick or mobility scooter I don't care any more even if people stare, they're just ignorant, they think because you look ok and in some cases aren't "old" then you're making afuss over nothing. It takes time to come to terms with it all but you will get there and we will all be there to support you because WE DO understand, this forum is a lifeline and we don't mind if you moan or rant and we are always proud of any achievments, so good luck and I'll be thinking of you at 1pm.

Sue x

woodbon

Hi, The others have really said it all. It's hard for people to get their heads round, I think. Arthritis is something most people think of as something you may get when you are older and that younger people have nothing to worry about, but I'm sure your friends will come to understand or just except the arthritis as part of you as a person and not think about it.
The beauty of this site is that people here understand what its like and can offer information, support and don't mind how much you want to say when you feel really down and need to let off steam!!! :eek: Love Sue xxx

MrsSparrow

Thank you all for your kind messages and support .

Saturday was terrible, woke up at 5am with water pouring through the living room ceiling...had no idea where it was coming from! When my husband was picking up my daughter from her sleepover at her school decided to investigate....opened up the airing cupboard (we never use) to find water pouring out and had the added bonus of the ceiling collapse on top of me! Ended up crying on the bathroom floor and have some VERY interesting bruises. Hubby got made redundant late last year and hasn't been able to get a job so an emergency plumber was out.

Had the scan OK...in fact the radiographer came back from lunch early so was done by ten past one. Judging by the reaction on her face and the fact she told me the scan needed reviewing by a senior consultant I'm not expecting great news...or maybe I'm just being paranoid.

All I can do now is wait for the call and try and stay positive although after this weekend feeling very down. The ceiling incident just felt like the final straw of months of worry and stress

Kate
x

stickywicket

Kate, I'm sorry but I'm really pushed for time right now. Just wanted to say try not to worry too much about the scan because I don't think they're actually allowed to tell you anything and facial expressions can mean anything.

Hope things get easier for you.

tillytop

Kate I am so sorry!

Glad you have now had the scan done though and, as Sticky says, I wouldn't be concerned that they wouldn't tell you anything. When I have asked at scans they have always told me they are not qualified to interpret the results so it has to be referred on to be read. Hope you don't have to wait too long.

Thinking of you.

Love Tillyxxx

hileena111

Hi Kate
Like the others I woujld say dont worry because of the look on her face
thats maybe her normal look

Love
Hileena

julie47

Hi kate

After reading your post i just send a massive hug ((((((((((((((())))))))))

Take care
juliepf x

MrsSparrow

Thank you all again, you all keep me positive with your comments .

Been exhausted the last 2 days, but had one great ray of hope. I CAN work again, just a case of retraining and knowing my limitations with mobility and the time constraints of looking after my two monsters. I'm going to retrain and do part time work, which won't affect my carers allowance, physical restrictions or my time with them.

Just glad to feel valuable again

Kate
x

hileena111

Great news Kate.....its fantastic to know that you can work again

Love
Hileena

MrsSparrow

Just had the dreaded phone call with the MRI results........

They wont tell me what type of arthritis I have is until i've seen the consultant.....but my spine is crumbling away at the base and a disc is totally prolapsed. The therapist is going to speak to the consultant as the earliest appointment on the system is 30th August but they are going to try and push me through quicker to discuss the options and treatments available.

Going to try and keep positive but I must admit I am terrified and very teary atm.

Kate
x

stickywicket

30th August is a long time to be sitting on tenterhooks and worrying, Kate. It's the not knowing that's the hardest, isn't it? I do hope they can push you through quicker. Do they have a system by which you can tell them you'd take a cancellation? In terms of what's actually going on in your body I can't see the time lapse making a lot of difference but there is also the pain and worry to deal with. I hope you can get an earlier appointment.

MrsSparrow

You're right its the not knowing that's so scary and the pain is getting steadily worse....totally shamed myself at my sons school picnic last week when I sat on the picnic blanket and couldn't get up again without screaming and having to get my husband to get on all fours so I could lever myself up.

So tired all the time too, I can't sleep properly waking up every one or two hours in pain, doesn't help my son's problems means he wakes up a lot too....when I finally get some sleep I get woken up!

I did tell the therapist I was able to take a cancellation, so just keeping my fingers crossed.

Kate
x

stickywicket

Stress almost always makes stuff worse, Kate. Can your GP give you something to help you sleep? At least with a good night's sleep behind you the day might be easier.

There is absolutely no shame in being unable to get up from a picnic basket, a chair, a loo seat(!) - I've done the lot, frequently, well, apart from the picnic basket. Mr SW is an expert hauler-upper these days but my two sons are pretty good at it too. Make sure you stay in charge and tell them exactly how it needs to be done for it to hurt least.

Hang around here, Kate. We'll stick with you.

MrsSparrow

Thank you so much

I'm going back to the GP tomorrow for more pain medication, will talk it all through with her and hopefully will get some proper short term relief until the appointment comes though, despite the fact my docs make me feel like a total waste of time. Being honest, I've been in pain for years on and off, I was brought up in a family where illness was seen as a weakness and have just "grinned and bourne it".

Thank you all so much with your support, today has been a real low spot with the truth sinking in its not a game, this is real

Kate
x

stickywicket

That sounds like a plan, Kate. And a good one. Let's know how you get on.

Grinning & bearing it will actually get you quite a long way. But then the meds will get you further.

You're right. It isn't a game. It's for real and probably for life so we need to take it seriously. Then, when it's under control, we can laugh at it sometimes.

You take care.

hileena111

Hi Kate,
Sorry I'm late putting another reply in but I'm having problems as well.
Last year when I had my THR I discovered that I couldnt sleep....even after I was told I could sleep on my side and not on my back. MY GP's spent ages trying to get something to help....Not a sleeping tablet but they tried to find out the cause of waking up was and like you it was pain so they tried different tablets to stop me waking up during th night with pain.....eventually they found soneithing after a lot of trial and error,.,,,hope your doc can find something that =will see you over this ddreadful period and also hoping that you get a cancellation that you can go to
Will be thinkg off you
Love
Hileena