Finding it harder to cope

ruthross

Hi,
I just wanted to have a bit of a rant really. I've got palindromic rheumatism and have been living with it for 7 years now. Pain and flare ups come and go, move around and are of varying degrees. I am self-employed - which means I have greater control over my time - and mostly quite physically active, when I can be. I've been using meditation and mindfulness and they're useful techniques for coping and living with pain and chronic illness. Many people I meet tell me I'm 'brave' for coping with such a disease. I shrug and say "well, you have to deal with what hand you've been given".

But... well, suddenly, since a terrible appointment with an extremely unsympathetic consultant, I have found myself just unable to cope with the emotional and psychological side of having a long-term chronic illness. I just feel utterly fed up. We went on holiday in September - an amazing 'holiday of a lifetime' kind of thing - and yet, I had a terrible acute flare up (worst this year) and it made me really upset and angry that you don't ever get to have a 'holiday' from your condition.

I've rearranged an appointment to see another consultant - which will be in two weeks. At which point I want to talk about trying a new drug regime (probably methotraxate, which I'm quite scared of). So, there is hope that I could find something that could get the attacks under control, although the fatigue is as hard to live with as the pain sometimes.

My boyfriend is extremely supportive and caring, which is great. But I don't think even he realises how depressed I am. My friends are either busy with families (I don't have children) or with their studies (I seem to know a lot of people who are mature students) and so I find myself feeling more and more isolated. And in any case, sympathetic though they are, no one really understands unless they've lived with a condition like this one.

Anyway, the man on the other end of the arthritis care helpline suggest I make more use of the forums here, and so I thought I'd just use the opportunity to have a bit of a rant!

sorry!

Ruth

frogmorton

Hi Ruth

you poor thing!!

Sounds like you have had a very special holiday tainted by arthritis :x l too would be upset and angry as well as

Add to that a naff consultant's appointment and no wonder you are feeling so down. Most of us have 'been there' too and 'the guy on the help line' is right we do understand and this is a good place to come on and let of steam and receive some support.

On this occasion you should be on the receiving end of some so a ((((())))) or two from me

Friends and family very often don't realise how down we are and we would rather not tell them. l keep quiet as l know how 'boring' it is if someone 'goes on' all the time. Of course they are living their lives as we want them to be and are happy for them. Sometimes though l can feel a bit covetous of the health they take for granted :sad:

The MTX...as you know there are loads on here who take it so you will get stacks of support from them I am quietly trucking along on Hydroxy and colchicine so can't help much

Keep talking to us would be my main advice to you (and me to ) it HELPS

Love

Toni xx

traluvie

Hi Ruth,

Welcome to the forum..
You have come to the right place to say how you feel, as we on here understand..
It can get very tough at times to keep going and to try and carry on as normal, and as you say harder to cope...
If it's any consolation i am having a bit of a naff day and i am normally so upbeat, so we all have them days luvie,, i usually ask someone on the forum to give me a kick up the jacksy and snap me out of it.. , but i know it's not always that easier..
I think maybe you are feeling like this because of the pain and fatigue you are going through at the moment.Once you have been to doctor and spoke about starting the meth, maybe you will start to feel better, , I am not on meth but a few people on here are so if you are worried about anything then just ask, although we are not doctors we have experience and can tell it from our perspective..
I hope the forum can help you feel better and support you where possible..xx

paddyw

Hi Ruth,It is a awful thing we have to deal with,i found the biggest thing was to accept what i had,i now have and cope much better.i do not take drugs only pain killers.You have to find a person be it your consultant rhumie nurse ,who you gel with ,you feel confident in.at the end of the day its your body you make it all happen.You dont say how old you are?I am 61 very fit may be easy for me to accept more than some one younger ,but till you do your fighting it ,not to say you lay down ,and let it happen, o no,Lots of help on here dont be afraid to ask. I shall be thinking about you Pat w

elnafinn

Hi Ruth

Welcome to the forum. I am pleased to see that you did call the helplines as that is what I would have suggested but you are obviously that one step ahead.

You received good advice, stay with us lot. There are not so many of us on here with PR but there are some and thank goodness the thread was quite high up the page so fairly easy to spot. I think I did bump up a couple of older threads on PR but don't quote me on that as I do that quite often when others ask about things.

Well done you complaining about that consultant. I am sure you mentioned that in another posting. Some of them really have no idea how to treat others, they may be good at operating but with some of them it seems to stop there. Probably why they become consultants. :roll:

Others do not understand about arthritis and that is why this forum is such a good place to call in. We do understand and it is a place where you can rant and probably feel better after doing that and you have not offended anyone. Also you will receive replies of support and help, practically 100% guaranteed.

I think what you say is very true that unless you have suffered something yourself you do not really know what it is like and I do not mean only illness. Some people do have the knack of making the right noises and know what to say and do in certain scenarios but they are few and far inbetween it would seem. These people are indeed little treasures.

I hope that you have been helped a little today by speaking with the helplines and joining us.

Hugs
Elna x

ruthross

Thank you everyone. Yesterday was not a Good Day. But hopefully today will be a better one. I am also going to try to see my doctor to see if I can get referred to a counsellor, as then someone will be paid to listen to me rant and complain! I also saw some very sympathetic friends yesterday, one of whom said that she was always impressed at how well I dealt with my PR and that if she would have been me, she would have been depressed all the time!

Hope everyone has a good day.

Ruth

valval

hi welcome i feel you are a very well ballanced person but stress does make things much worse the worse part of arther is the way it messes with out heads but just because you have had a set back it not the end of things you will get meds to help and you will get back to positive vibes might not be straight away but we are here when you need us i for one hardly ever try to tell my oh how down i get because it feels like i am moaning all the time then he gets worried about me and that even harder to cope with so come on here and these lovely people let me moan and then give me a kick up the u know where lol val

cloud9

I think it's a good idea to go see your G.P. I was in a similar position to you a few months ago and had already got to the stage where I wondered if my life was worth living. My sister was the only one who knew how bad I'd got. I had to see my G.P. about another matter, he was a locum and I'd never seen him before. He immediately recognised that I was depressed and with one question and a hand on my shoulder he had me sobbing. Just by telling me that he understood, that my feelings were valid and that he could only help if I asked him to, he got me back on the road to recovery. It's really hard to admit that we're not coping. I hated doing it. Good luck to you, and keep talking to people who understand. XX

Airwave!

Sorry for the non hugs etc, I'm not too good at them. You are in the best spot, here on the arthers place forum.

Well, there are positives there, you are being treated and even consultants have bad days and may have had a bad guess in dealing with you? Did you ever think that some medicine was more than this? arther will ALWAYS come back and BITE!

I'm sitting here with a hot wheat bag on my wrist trying not to use my fingertips to type and feeling sorry for myself. What we need is a treat, yorkshire tea AND a digestive for starters! There, thats better.....

Its an awful long reach from shift to rtyui with one hand typing.

salamander

Hi Ruth,

Ironically, I am having one of those days you are talking about today! Fatigue +++ Could hardly get out of bed this morning and now want to crawl back in. I even missed my mindfulness class! We all have them. I find it very difficult to cope all the time, to be strong and upbeat. Sometimes you just have to let it all out - well, at least that is my experience. Then I pick myself and carry on, which is what you are doing quite well from the sound of it!

Methotrexate didn't work for me but I have a couple of friends who are on it with no side effects at all and real improvement of symptoms. It's different for everyone. Good luck with making the decision.

suzygirl

Hi Ruth, rant away, we all understand. When my illness first started it was the sheer unpredictability that got to me the most. The only thing I could count on was that the least convenient time to be ill, was the time it would strike.

It does take time to adapt and adjust and it is a kind of grieving process. We all have to grieve for our losses. It can be an isolating illness, but the forum is great to help counteract that.

You are obviously doing well, or your friend wouldn't have said that. Keep going and I hope your next consultant appt is better. Try to see the top consultant rather than a registrar. Just ask the clinic nurse to ensure it, they don't usually mind.

Photos of any swellings etc can also help.

Poppyg1rl

Hi Ruth,
Just wanted to say welcome, and that you are among wonderful people here, who understand and care about you.
Dealing with any arthritis is tough, and tests not only your body, but your mind too..unhelpful Consultants are out there unfortunately as you have found, but there are good ones too, see if you can do as already suggested and ask the nurses to ensure the next appointment is with the consultant that you prefer, usually they dont mind at all
Thinking of you Ruth, gentle hugs Xxx

ruthross

Hi everyone,
thanks so much for your support. Just thought I'd let you all know that I've managed to book onto an 'expert patient' programme for self-management. Unfortunately I JUST missed a course which started two weeks ago, so the next one doesn't start til the end of January, but as my PR isn't going anywhere, it'll still be useful. In the meantime I'm also going to ask for a referral to a counsellor AND a pain management clinic. Although I still feel rubbish, at least I know I'm doing all I can to try and cope with things.
I shall report back as to how good the course was. It's free - which is great - and on the NHS.

today: wrist pain. But otherwise all clear.

have a good wednesday all

ruthross

Hi everyone. I just wanted to update you all and let you know what's been happening.
I started a blog to try and help myself feel better. So far I've only written two posts, but I hope to post around two or three times a week.
I've started seeing a counsellor - to try and deal with the depression side of things.
i've (finally) been referred to a pain clinic (though my Dr was reluctant to do so!)
I managed to get to see the 'proper' sympathetic consultant today and he gave me a decent consultation and is going to consider changing my disease modifying drugs. I am beginning to have hope again that I might not need to be in pain so much. I've asked whether I can try taking antibiotics instead of trying methatraxate and he's going to look up some research and get back to me. I had fewer attacks when I was on doxy for malaria prevention when I lived in Madagascar and so wondered if it was connected. I found some research but he's going to look into it further for me. He said that he'll get back to me when he has made a decision.
I think that even if a new treatment tackles only the pain, and not the fatigue, it will still be a vast improvement.

skezier

hi Ruth,

glad you got a decent appointment today. i also do feel better on some antibiotics but they tell me thats not possible with the oa and pa and yet i do feel better on the anti-bots.... what do i know cus i only have how i feel to go on

in animal arthritis there is great results possible with antibiotics but they don;t get ra etc in the way we do but their oa can be helped by it so it will be interesting to read what the human perception is so do you mind letting us know what he comes back to you wiht?

glad the blog is helping and i do still think about having one. Cris x

dreamdaisy

I had a spell off my humira and meth recently (thanks to a nasty dose of pharyngitis) and I felt so much better in myself despite the penicillin. I think there is a link between arthritis and anti-bios (especially for those with reactive arthritis) so why not with the rest of us? I was laughed out of court by a snotty rheumatology nurse when I told her about my experience - but as she is a) only a nurse and b) not arthritic what the **** would she know anyway? There is research going on about this (it's been mentioned on here) such treatment is happening in America I believe but it's the same old story - no one is sure about the long-term effects of taking anti-bios long-term. Who cares about the long term? Short-term relief has a deal to recommend it! Skezier was right, she is not alone in feeling the difference when on anti-bs, there are a fair few of us but hey, what would we know? We're only the patients. DD

barbara12

Hi Ruth Im so sorry I missed this, you have had a rough ride, and has for the consultant I wonder if he knew what effect he had on you, that he would change his ways, I dont think we all do enough complaining.
One thing I do know that if anyone can deal with this its you, I really can pick up on your determination, and I do wish you well with your treatment, and please keep us updated.x