silent: over the years lv had RA its only recently lv... - NRAS

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beaker profile image
11 Replies

over the years lv had RA its only recently lv been told a lot of underlineing problems l have is due to treatments l have had and how it afects your immune system, if l feel this was made clear from the being l wonder how l would have reacted? Having RA is a Cruel thing to have as lv found you begina new treatment and g8 it works, then slowly RA fights back and your back to where you were so unfair, l know others like cancer suffers have worst than me but sometimes l just think sadly lm dont care bout others l care only bout my pain & suffering

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beaker
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11 Replies
beaker profile image
beaker

my foto was taken when l was able jog l used to do so call fun runs over 5 miles or 13miles and fun hahha not the word l would have used, but its a hobbie l miss the most,,,,

sylvi profile image
sylvi

RA, is sooo limiting isn't it. I do understand where your coming from. I still find it difficult to accept the things i can no longer do. Gardening is a pleasure for me and to find i can only do so much before i have to stop is annoying. Pain is pain whoever is suffering it,its all the same, your pain is as much as anyone elses. I feel the same way, even though i know there people who are worse than me.

Photo oh happy days. I wish i was like i was before ra.

sylvi.x

laney84 profile image
laney84

can i ask what the problems from the treatments are?? sorry for being nosey but im interested to hear what the docs dont tell us!

thanks

x

beaker profile image
beaker in reply to laney84

l was told by a chest doctor( l had pnemoain)that all the diffrent pills n potions used in RA can have an affect on your immune sytem, and if you have RA,lv yet to have a treatment work long term, and the best advice l can give to any new RA suffer is make the most of the good days

allanah profile image
allanah

Yes I too have struggled with not being able to do the mountain climbs and exercise I used to do. Its very hard but i've been trying hard to look still at what i can do and try to block out what i cant do. I got some help from a counsellor and was very resist to going but in some ways it did help me comes to terms with the new me a little. Good luck

Axx

Hi Beaker. While it's good to remember sometimes that there are always others worse off than ourselves I don't see why everyone assumes that a diagnosis of cancer is necessarily worse than a diagnosis of RA? Surely it depends where the cancer is and how life threatening and equally how bad the RA is? RA can be life threatening too whereas some cancer is very curable RA isn't. We share the same drugs only cancer sufferers only get them for a short burst of time - about 3 months - whereas we are on a lower dose for a very long time - possibly for life?

I have known several people closely who have died from cancer but also known a couple of people who have died from RA - and equally I know of people who have managed to live good lives with RA once it was controlled and I know many people who have survived cancer and do not have to continue to take toxic drugs for the rest of their lives. Also many people with cancer do not feel much pain whereas most people with RA have to live with bouts of chronic pain for the rest of their lives and find ways to manage it.

When you're in a lot of pain it doesn't really help to know that others are worse off anyway - so don't beat yourself up for not seeming to care. At the end of the day it's a struggle to manage pain and that takes up a lot of our time and energy so it is not really a wonder that we get very self absorbed is it?!

Maybe you will get back to your more athletic self again one day - I am often told of people with RA for whom hill walking and rambling is no longer such a problem. I am lucky to be losing weight and exercising every day and have found that I'm able to keep pain away from my lower body now for 6 months. I'm probably just very lucky but maybe one day you will be again too?

It is a constant battle and we have to fight on as best we can x

Disillusioned profile image
Disillusioned

I've just discovered that I have COPD due to the RA and am currently on a trial for a new drug to treat it.

I long for the days when I could go hill walking but have resigned myself to the fact it may never happen again. I played 5-a-side football until I was 46 (Now 64) and led an active life with a growing family.

I spend most of my time now doing voluntary work for local stuff and a national charity.

cherry2 profile image
cherry2

Hi like you i used to jog, often 5-6 miles before a full days work, or id be at the gym when it opened at 6.30 am and do an aerobic class for 45 mins, or swim 80 lengths, shower and off to work bright eyed and bushy tailed - where did that life go and when exercise was such a big part of your life what do you replace it with? Sometimes i wish that id been a smoking couch potato then maybe my life wouldn't have taken such a dramatic change for the worse!

tiger profile image
tiger in reply to cherry2

I agree, it is very difficult to go from a very active life to a sedentary one. Thankfully my GP said that having a dog would get me out walking, which convinced my husband to agree to one (he is a cat man). So although I can't run a marathon anymore (did my last one in 2007) I still get out and get some fresh air and a bit of exercise

beaker profile image
beaker in reply to tiger

get a dog! is the doctor going to pay your vet bills and take him walkies in the rain when your RA is bad, think your doctor is in his own little twilght.Spme place have walking clubs in there area, thats better advice, whats next get parrot to talk to if your lonely

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