It all boils down to one thing, medication. If it works life is great, if does'nt life can be hell.
Fortunately (hmmm...) I got RA late in life I was 48 and have had it two years. My heart bleeds when I see some of you that have had it a life time, usually combined with other medical issues I mean WOW!!! and HOW!!!
Theres a lot of courage often spoken here, tearful reading at times, but ultimately its gives strength to others when reading, like me.
As I am a "newbie" to RA, and each day I get little older, I have no doubt I will suffer some of the issues discussed here, untill then I'm grabbing life.
Whilst I can ...
Written by
PeteC
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HI Pete
I am probably in the same boat as you (although Younger) just diagnosed 11 months ago at 43. Like you when i see the posts from younger people, particularly mothers of young babies i have only admiration for their sheer courage and ability to keep going!
I think I can say with some certainty that I'm younger and a Mum (mum of two fab boys) You are right there are some heart stopping stories on here but those with children cope becouse they have to - our children give us a purpose to carry on. It does not matter who we are or what life we lead this is a horrid condition - in many varying forms - nice comments like these and the support of others make things less lonely; so thank you. Mel
I agree, if you have managed to be on the correct medication for you and it is enabling you to live a reasonable pain free life - then grab it with both hands and don't look back.
I hope to be like that in the future and its this hope that makes me carry on.
I've just reduced (first step down) of steroids. I have noticied the pain returning & some heat returning to my hands. I have had to take pain relief again regularly in the mornings. This confirms that mtx (although I never expected it to work so quickly), is yet to start its magic! I dread the return of the pain more than anything else.
When I can't do stuff with my 13 yr old son he blames my hands and has complained to his dad (my hubby), "that mum don't do anything anymore with him & will he get my hands problem when he is older". This really upsets me and he does not really understand the conditions and yes we - hubby and I do shield it from him. We where an active family, we use to go center parcs most easters, we walk as a family both on holiday and locally most wkends. All that has stopped now as I don't have the energy or usually I am in to much pain since my diagnosis.
The positive story helps as they give you hope and you get to hear what combination of drugs seem to be successful, the moaning stories informs you about the sheer frustrations of the disease and allows you to vent - which I think is very necessary and the inbetween story helps to spur you on!!!!
Yes I would agree if you hit on the right combination early on you are very fortunate indeed. I am hoping to be one of those individuals - keep my fingers crossed.
Get a scooter friend,i hate them but its a lifesaver for me.You can get a little one that can fold up to put into a car.Then the kids can always sit on the back!!!! Sylvia.xx
Well said Pete.
My aunt had RA from late teens had three children close together how she coped i'll never know!! I had my three close together before RA and that was difficult enough!! Sadly she died at the age of 44, that was 15 years ago but we still miss her so much, one day she was there the next she was gone forever - YES grab life while you can.
Very sad/scarey thing for us young arthritics to hear ;-( What did she die of? Did she have a good life until then? Sorry for the questions just scared!
Each and everyone of us don't know any different we've had it so long,we're no heroes or brave its just what has been handed to us. I get told i'm brave and i look good,but i don't know any different. I've also been told that it skips a generation don't know how true it is,thats what happened with me.
Thank goodness for some of the toilet humour that we get on here,i get up some mornings feeling like i've been pulled through a hedge backwards,but i only have to log on here and there is always something to make me smile and that always help to start a painful day. Young or old the pain an suffering is all the same, so people keep slogging on enjoy the good days and tell us all about it and tell us when the bad days hit as well,someone will always blog and cheer you up.
I totally agree with you Sylvi. I've had Ankylosing Spondylitis since childhood I'm coming up to 53 and I'm certainly no hero or brave, I've cried buckets over the years.
I wasn't diagnosed until I was 32 so I'd already had my family by then (4 children) and yes I just got on with it.
I've worked most of my life and yes very difficult at times with lots of tears. On a positive note... Medications are better now and people are usually diagnosed much earlier with modern technologies.
One thing us humans are good at is adapting and changing how we do things. We're also very good at helping/supporting others with our knowledge experience.
Hopefully one day we'll have a medication to completely eradicate these dreadful, painful conditions.
I promise when I can walk again I will grab every piece of life and will neve take anything for granted.
I'm 24, been in a severe flare since July, medication totally wrong and taking a Long time to be sorted.
I will admit I thouht it was an old persons disease and explaining to people I have RA and seeing there shocked faces isn't too great.
I see the posts and blogs about people with children and weddings and sylvi with her scooter and it really helps me to know I will be able to lead a normal life. It's just this period of it I'm a bit broken.
Grab life And live it to the full.
Most people have rainy day savings, I have a good RA day pot
It does get better marnie,but i can't tell you how long it wil take. If you have to have a scooter personlise it,it will make people notice you. I like the ra day pot thats a new one on me. I've got my nails done all different colours and the same with my hair. It sounds silly i know but people comment on my nails and hair and it means i have to interact with them and it helps me as well. I'm 56yrs and i dread what i will be like in a few years time,i try not to think of it too often,but when i'm having a bad day i do. I'm in the midlands just outside coventry and the sun is shining,but i'm very tired due to pain,but never mind i've got a christening to go to this afternoon. Sylvia.xx
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