hi does anyone on here feel like they dont have this cronic illness because it doesn't feel real

[jaqi1]

[Tillytop]

Hello Jaq1

Have just seen your comment on K3let's question and just wanted to say I am sorry you are finding things so difficult.

Thinking of you.

Tillyx

[helixhelix]

hi Jaqi, it can take a long time to get your head round this. I've been diagnosed a few years now, and I still get moments where I'm sure it was just a big mistake, usually when I'm feeling good and painfree. But then when I'm having a bad spell then it all comes crashing down again. I think people who don't have RA don't really quite understand the emotional effect as well as the physical stuff, and assume that if the pills are working then things must be ok. And it's hard to think about what I might be like in 10 or 20 years, as I've got no idea. But generally I try not to worry too much about the future, and just take it one prescription at a time. polly

[oldtimer]

Not only do other people say "But you look so well!", I often feel a fraud, or as if it isn't really happening to me.

I understand that with any bereavement (In this case it's the grief over loss of health) people go through a phase of not believing that it's true, it's a bad dream and any minute I'll wake up, etc.

But perhaps its our way of dealing with it - we can't take too much reality!

[Hidden]

It's starting to feel real to me, not sure if that's a good thing or not! I think in my case it is. I think there are certain things that make it feel unreal. One of them is when medical professionals act as if my illness isn't worth bothering about. Another is when people who should know better refuse to accept what is happening to me or just ignore it.

The last Rheumatologist I saw was concerned, emphasised the seriousness of the situation and came up with a plan of action. That's the sort of reality I like. And last night an old friend who I've not seen for years phoned up. She'd heard that I was ill and wanted to know what was happening. She listened, I could tell she was a bit shocked, she didn't have any off the cuff advice. After a while we talked about other things. That too felt real in a good way.

I think that the more people you can talk to about what you are going through the better. Personally I find it difficult to know how to play this - I don't want to go on & on but I want to say enough to explain why things are so different now. I seem to have explained myself to quite a few people now without pushing them away, though. If people expect you to be just like you used to be then there is a weird sense of unreality. It's hard to adjust all on your own, you need people around you to adjust too. (And of course sometimes you don't want to have to explain anything or even to let on that you are ill, but that's another story!).

Christina xx

[juddo39 in reply to Hidden]

I've just read this and it completely mirrors my thoughts and feelings exactly, I must write it down somewhere and pull it out when I need to explain myself.

Judith x

[Dotty7]

I've been off work since the end of May, and I'm much better than I was back in the Spring, so sometimes I have to remind myself quite how bad things were back then when I was exhausted and couldn't cope with either my job or home life. On days when I'm quite active I have to remind myself that this is not like a day's teaching, followed by another one...and another...and another, including all the evenings of work as well. Even on a busy day now, I'm generally finished being active by 6pm, and can then just relax for the evening - very much not like a teaching day, where I used to come home, cook tea then try to motivate myself to start work again despite being so wiped out.

So, yes, sometimes it all seems a bit unreal - why am I at home when I ought to be at work like everyone else - but then I remember.

[Hidden in reply to Dotty7]

Strange how many folks on this site are teachers & ex-teachers ..... anyone would think that the work load might be a trigger for inflammatory arthritis!

[Julynn in reply to Hidden]

I am a teacher... Had RA for 3yrs. now. Sometimes I know without

A doubt it is real... With all the pain and fatigue !!

Other times I still find myself in denial.

[su2po]

I get that too, when I am looking after myself and resting enough I feel ok and I get antsy, then I try and do more than I am capable of and get reminded that yeah I am sick. I had a conversation with my flatmate the other day about why I spend so much time at home or in my room and went through the usual "but if you get out and walk more..." " do you eat well?" " What helps me is..." and I had to explain patiently that I will get out when I can, diet won't heal me and you don't have a chronic illness so what helps you is not going to help me. Trying to explain to people that this illness is bigger than positive thinking or regular walks can make it seem unreal to me too because I can see them not believing it cos I look well and in turn I almost don't believe it myself cos it does sound unbelievable. It's hard, harder than anyone can explain but at least there are people here that understand. you are not alone.

[Dotty7]

Feather, I think there may be the element of stress to add to it as well!

Dotty

[Josie2]

Not a teacher but a teaching assistant lol, though i cant claim to be under anywhere near as much stress as teachers are, i take my hat off to them

Xxx

[Hidden]

Another teacher I'm afraid, in final year of training. I was diagnosed about 18 months ago and at the time, although I didn't want to believe any of it, the illness was certainly very real to me. Like many people have already said on her, there are times it feels real and times it doesn't. This last summer has been great for me and it felt like I might have been close to being over the worst and now I'm in a spell of feeling awful. It comes in cycles that you just have to get used to, if that's possible! Do what you can when your feeling good and rest as much as possible when you're not. Keep your chin up! Xx

[Hidden]

Jaqui I'm not a teacher but am very fed up indeed with friends who haven't seen me for a year because if geographical distance and seem to have no concept of why I'm taking such powerful drugs. Only when I showed bossy oldest friend my hands and she could see how their shape has changed a bit now did she let up on complete dismissal.

But even OH is making me rush all around central London like a manic moth on holiday. He wants to do and see everything possible and I'm currently sitting on a dirty step in Westminster on strike and feeling like I should be on a different holiday to the rest of my family - know what I mean? My feet hurt like crazy and I want to curl up somewhere and sleep for hours and then have a nice hot bath but no chance! I wish they could all just step inside my body for a while and I into theirs. It's not that I accept this is RA but just that I realise I must have had it for much longer because this is me good. This time 2 years ago I would have been crying and hardly able to walk - now it's just a matter if hobbling and feeling a million miles away from everyone else except for you people!

Tilda xxx

[su2po in reply to Hidden]

I'm totally with you about your friends not understanding. It's hard enough having to cope with this illness without having to emotionally babysit people because they just don't get it. I'm learning to just not engage with people about it any more and if friends don't make the effort with me then I won't make the effort with them simple as, most of my old friends have turned into business aquaintances now, I keep my distance as it's far less stressful. I have fewer friends than I used to but I focus on my juggling that I find I don't really need them. Fewer and better quality is far less taxing.

[Hidden]

Sorry I'm using mobile and my ofs keep turning into ifs!!