Feeling low....

[freesthomas]

Hi everyone. I haven't been on here very long and have done a couple of replies to posts. Posting this feels weird as I've never really come to terms with what I have even though I've had symptoms since I was 14yrs old. Was diagnosed when I was 24 (annoys 39) with late on-set JIA. Quite a bit of the probs I have is due to damage that was done years ago. I work full time and have a brilliant husband who helps me so much. We've known each other for 25 years and met when I first started having symptoms. I think reading some of the posts has made me realise that in a way I haven't taken it seriously enough and have been positive and brushed it under the carpet. I feel sometimes like I've already had a lifetime's worth of this disease and I need to preserve my joints better and find the time to do the exercises which will help. Sorry for the doom and gloom and I know there's always someone worse off. It's just seem to have hit me all of a sudden and just get sick of feeling sick...

[Philip]

Hello, don't worry about the doom and gloom because we all get there sometime or other, when things get that bad I usually call the Samaritans and have a good old moan to them, they do understand something's but great for getting things off your chest.

Here's the number just incase.

Samaritans 08457909090 there is a great bunch of people there, some are suffering RA and maybe lots of other things too.

I hope this helps

Philip

[freesthomas in reply to Philip]

Hi Philip... Thanks for your reply. It's nice to know that there are people on here that understand and care. I think most people who don't understand think arthritis is just something that causes a few aches and pains. Some of the People I work with are prob the least understanding. I'm sure I will feel better about things and I just need to concentrate on doing the things that will benefit me rather than stressing over insignificant things. Thanks again 😊

[dobsey]

Feeling for you 😏

I am lucky as I did not get it till was 55

So wrong that children get this 😫😫😫

If you look after yourself you are helping your family and it sounds like you have a wonderful

Husband 😊😊

Just start thinking about yourself

Don't apologise either , we all feel down lots at times

David 😊😊

[freesthomas in reply to dobsey]

Thanks for your support.....I think I need to come to terms with it and find a way forward to prevent any unecessary further damage to my joints.....

Before being diagnosed with JIA, I never knew that people under a certain age could get it and 55 is also what I would have considered young to get RA. I guess it's nice to know we are not alone as it's difficult to explain why we feel so low at times.

[KB-Fibro]

Hey, don't apologise for feeling low and having a bit of a moan ( it was a very tiny one!)

You've been dealing with this in your own way for a long time.

I was only diagnosed a couple of years ago so can't imagine how it was for you at 14.

That may be something I have to confront over the next week or two. My 15 yr old daughter is having blood tests next week for inflammatory arthritis. She was born with bi- lateral talipies ( can't spell!) so has probs with feet, ankles knees hips back and neck. I'm hoping her pain at the moment is related to that and will just require physio. Can't handle the thought of her having to deal with arthritis at 15.

Your dealing with this in your way, with the support of someone who loves you....

that's ok. Be kind to yourself, give yourself a break.

Share how you feel here, we all understand.

Kate x

[freesthomas in reply to KB-Fibro]

Hi Kate.....Thank you for the support. I hope your daughter will be ok. I know that half the battle if it is arthritis is getting diagnosed at the early stages, which mine wasn't. I was an in-patient in the RNHRD in Bath. They were brilliant and had an excellent physio department. I go back and forth every year for an annual check up. The physio locally is not half as good as in the RNHRD. I'm currently waiting for an OT appointment in Bath and because of NHS politics, I am waiting for a physio appointment in a hospital near my home. Let me know how your daughter comes along - fingers crossed she will be okay and the pain levels will ease with physio......

Fiona xx

[allanah]

You've put up with it this long and only now you are talking about it? I think you deserve a medal

Nras have a brilliant helpline if you want yo talk to someone who knows what they are talking about!!

But keep strong, hang on in there you are doing great and coping with family etc when you are in pain takes a lot. Sometimes it's just good to get it off your chest and I think here we all get it xxxxx keep talking to us ! Xx A

[freesthomas in reply to allanah]

Thanks for your support.....It felt strange typing up my post last night. Over the years, I have always been super positive and always listened and given advice to others. Even though I've had JIA for years, I don't think I have properly come to terms with it and it felt like a problem shared putting in on this forum as there are so many people in the same/similar position. Today's a new day and I am going to spend some time this weekend putting a gentle exercise plan together and making the time to get my health sorted....I will definately be visiting this forum regularly and hope that I can give back in terms of experience/advice xx

[allanah in reply to freesthomas]

I think you would be great. I have only had RA 4 years but still find it hard to accept xx

[freesthomas in reply to allanah]

aww thanks - I always want to give back and help in any way I can xx

[oldtimer]

If it's any help I think it took me almost 30 years to come to terms with the fact that I'm stuck with this disease. I feel that I have been given permission by myself to give in occasionally now instead of being super-positive and always saying "Of course, I can do it" and suffering afterwards.

[freesthomas in reply to oldtimer]

I can relate to that and it only hit me last night that 25 years! Whenever I have a small burst of energy I cannot seem to pace myself and the following day I am burned out! I've always believed in making mistakes and learning from them, but I seem to make the same one over and over I definately need to give myself that permission. I've always felt I have to prove to others when I am unable to do something it is actually genuine and I'm not being lazy or unwilling - as some think . I guess I've never been one of those people who want to be labelled and to some degree I suppose by playing it down and not being very vocal on bad days, it hasn't done me any favours (especially dealing with work colleagues).

[flow4 in reply to freesthomas]

Oh, how I identify with that! I feel like a fraud all the time! I think it comes from being undiagnosed for so long...

[cathie]

IVe had RA since about 1999 and it's been a roller coaster. I'm inclined to want to push it to once side but have usually been quite good about taking meds. I still haven't got used to the unexpected things medics can throw at you during appointments. Can never respond adequately.

I think the best things I've learned are pacing and planning so I know the way round when I go to places. But I can console myself with the things I was able to do before I developed ra, so developing it early must be very hard.

Xc

[freesthomas]

Hi Cathie. I think due to being so young, that's why I haven't actually processed it in my mind. At first I was in complete shock then I just felt numb and like I was on auto-pilot just going through the motions. I'm needle-phoebic which is a real issue for me. As far as meds go, I'm taking hydroxychloroquine and arthrotec. They have been mentioning methotrixate, but due to my age I worry about the side effects long term. I'm trying to listen to my body and if the current meds don't work, then I guess I will have to re-think. It's a balancing act at times!!

[Tinat3]

I was only diagnosed in January this year and have always tried to remain positive.

I am of the belief that I think I will be back to 'normal' once the meds start to work and life won't be much different to how it was before being diagnosed.

Unfortunately I am now on drug no. 3 and am beginning to lose that positivity to the point where I am now getting to the point of being depressed about my situation.

I know it can take time to get the drugs right and people say that it will get better but at this moment in time I feel totally despondent about the whole situation.

I do take comfort knowing that they're are others like ourselves who have been feeling the same and have come through the other side and I hope you find the acceptance in your own way ad do I.

Good luck x

[freesthomas in reply to Tinat3]

Hi....I think being positive overall is so important and my body definately benefits from that. There are so many various types of this disease and medication, it can take a while to find the right balance. At least we are not alone in this quest and it's reassuring that we will get there and in the meantime there are others who can give good advice. I think the more lethargic I feel, the more low I feel like I have no fight like I do on good days (if that makes sense)!

The early diagnosis is key to feeling better in the shortest time possible and you may well find that "normal" is possible as you won't have any long term damage to joints.

Wishing you good health and a speedy resolution in finding the right meds and thank you for your kind words of support....