Feelings

[Jazzy21]

I have just been to see my rheumatologist today. After all the trouble I had at the Southern General when I lost my peripheral vision. I thought she should be updated. Just something she mentioned about my time in the neurology ward in my discharge info. My question is this. Do you ever feel like people don't believe you or how bad this disease effects you?

[devonshiredumpling]

Hello Mrs Insomnia!

Yes, I often feel that way; I felt that way at my last rheumatology appointment. Probably, most of the time anyway, it's just our low self-esteem kicking in.

And, guess what, old bean? I believe you - and I know you believe me. That's brilliant innit?

love from

Mrs Insomnia Mark 2

[frisky]

It's horrible that we still have to feel this way! Ie like we'd want to pretend to feel so dreadfully.... Gurrrrrrrrrrr!!!!!!!!!!! Ffs!!

I have been really lucky and now have a great consultant who was great and took me seriously, it was such a relief to treated like a sane person.

I would try and keep looking around for another consultant.

Big hugs xxxx

[devonshiredumpling]

The problem is travel though Anything longer than, say, an hour and I'm bed-bound for a week!

What I'm hoping to do is get a referral to one of the Centres of Excellence for an assessment and then continue the treatment they prescribe under the care of the local bods. Perhaps an annual appointment or something like that. I've read that reasonable accommodation charges will be paid for those who have to travel.

I must renew my subscription to the BSS because it's all written up in the next newsletter apparently.

[Jazzy21 in reply to devonshiredumpling]

I live in Scotland so cant access the centres of excellence. I wish I could. Thank you for answering my question.

[dawnie2750]

YES!!!!

But what you have to remember is that alot of BD is hidden..and tbh unless you wear a sandwich board listing your problems..then most people wouldnt know...

Iv taken to saying 'im fine' which translated as 'omg,,im bloody knackered, my throat and joints ache, and i generally feel crap' ..but lets be honest unless its as plain as the nose on your face, and they can see it and measure it...most people dont really care...

Most people in my life know i have BD..but id bet that only my fella, close family and a handfull of my inner circle could tell you anything about it...and please please please learn to accept this or you will go mad!!!

Unless you have a doctor who is genuinely interested in the immune system, and wants to help, the prospects are pretty bleak..

when I have a bad bout I go to my docs and he asks me what will make it better dawn!!! steroids are my first answer, but im a big lass so its a low dose...

why dont you push to be refered to the centre of excellence like our devonshiredumpling... I would say im not bad enough personally, but with what I read on here alot of people would qualify including you...phone them directly, find a doctors name and ask to speak to his secretary..

Dont give up hope

dawn xxx

[Jazzy21 in reply to dawnie2750]

Thanks for this. I cant access the centre of excellence as I am in Scotland and am not allowed to see anyone outside Scotland. I think with my eyesight getting worse and my Loss of peripheral vision is getting me down. When I was in hospital all my MRIs and Ct scans and all tests proved negative so the neurologist just looked at me as if to say this is in your mind. The Rheumatologist is a second opinion so at least she know I have BD but she isnt really bothered about my sight. I am panicing about it.

[Hidden]

Hi Jazzy, Feelings is a good subject heading – perhaps we can all use that, and then qualify it with the question, e.g. FEELINGS – Do you feel people don’t believe you or how bad this disease affects you?

I know that is exactly what you asked, but ‘Feelings’ as a question heading could mean that you are generally feeling low and would like some support, or that you have been having funny feelings in your feet… do you see what I mean?

We are really keen to get the most out of this forum for everyone so here in the early stages is a good time to be thinking about this – and also adding our suggestions about types of heading and organisation of the forum to the post on that subject.

This is my answer to your question – I agree with everyone above, and YES. I do still feel that people don’t believe me or understand how badly this disease affects me. The difference in how it makes me feel now from how it used to make me feel - I don’t let it get to me unless it’s really important – for example a Doctor who knows I have this condition and is apparently treating me for it darn well should know I am telling the truth! I always take copies of most recent clinic letters from all docs I have seen to the next doc I see. It’s their choice if they want to keep them on file and I don’t expect them to sit and read them all, but if something new or different has been noted or recommended by another specialist, I can simply hand over the letter and there is no questioning or disbelieving to put up with. If they have a problem with it I suggest they take it up with the person who wrote the letter and get back to me.

I have actually got one Consultant to phone another while I am there to discuss and clarify some issues. In fairness, they did it to help me AND themselves, not because we had a problem or disagreement. Any professional should be prepared and willing to learn from others – none of them know everything about all aspects of the condition and we shouldn't expect them too - we are all still learning.

I am very lucky with my docs – apart from one new one recently – and now years of fine tuning have found us in a place of mutual respect and I know they believe what I say. If I see one of their juniors I may get a raised eyebrow or some probing questions, but I tell myself they are learning, answer the question and refer to the notes or ask them to refer to their superiors.

Re the recent new one – he clearly didn’t have a clue but wasn’t prepared to admit it and was personally offended to have his expertise queried. They shouldn’t be, I wasn’t rude, I asked a reasonable question about his experience and whether he felt he was the best person to treat me – as there was no point in wasting anyone’s time. He wrote a rather unpleasant letter. So I wrote one of my own addressing his points and requested it to be attached to his with my notes.

Re family and friends – well, I’ve had this for so long they either get it or they don’t – if they ask for details or are interested, I tell them, or suggest they look at the website, or give them info. If they are uncomfortable around me then I am uncomfortable around them so why waste time pretending?

I look at it as if I was in a GP waiting room – how often do you hear people say to each other,

‘hello, how are you?’ and the other answers ‘fine thanks, you?’ I’m guilty of that myself, I bet most of us are. The day to day truth of it is that people don’t really want to know the details and actually, I don’t want them to know and I don't want to know theirs either (being told the colour of snot of a non BD person who had a chest infection the other day was sooooooo not what I wanted!) So we have reached a point where I am having a ‘normal for me’ day (which would probably have a lot of people taking a day of work or taking to their beds) , a not very good day, a bad day, or a very bad day and we leave it at that.

I have been upset over the years about losing a few friends - I thought it was because they didn’t believe me and told myself if they were really my friends they would have and blah blah – years later, I realise they genuinely just couldn’t handle it, no matter if they believed me, we all get certain things from friendships and partnerships – when those things change, some of us can’t adapt. It’s sad, but not a crime. If someone doesn’t believe me I don’t stress about it, they’re not, so why make myself ill? I deal with it as sensibly as I can and try and put it behind me.

Another thought – it can help to take someone with you to appointments to support you and back you up if necessary.

With Centres of Excellence on the horizon for (hopefully) all of us, it can surely only get better!

[Jazzy21]

Thank you your words of wisdom are a great help at this time as my peripheral vision loss is getting me down.

Blessings Jazzy.

[Godles]

Hi Jazzy,

It's rubbish to feel the people treating you don't know what they're doing.

Are you seeing an eye specialist?

I really echo the comment above to take someone with you to appointments. I have found this really, really helpful, especially when things aren't going well with treatment.

Is your GP supportive? If not, CHANGE! I have changed GP until finding someone who is interested in my condition and responds to my requests. A supportive GP should be able to help you get the proper treatment for your eyes.

I live in Wales, so can't access the specialist centres either. However, you can write to your health board/trust (not sure what they're called in Scotland sorry) if you feel you're not getting the care you need. Your GP can also make an individual funding application for you to be seen by a specialist outside of Scotland, if the specialism is not available where you are.

It can be soul destroying to have to make all of this effort just to get adequate care, and when you're feeling ill and low, it can seem impossible to do. But, I have found that the more proactive I am in chasing health professionals, and seeking out better care, the better it is for me. Do you have a supportive network, partner, family or friends? I'm very lucky to have a partner who really supports me and helps us live with BD.

Godles

[runninggirl08]

I actually saw my rheum the other day. Was explaining all the side effects I was having w my remicade infusions, he actually said u don't have to get all the side effects if they weren't real. If doctors would read these forums,m they would get our pain and easily a struggles.