A cautionary tale and an out and out ‘get it off my chest’ moan!

Trying very hard to get into the Christmas spirit and even if I say so myself I think I deserve an Oscar for my acting abilities around my children – fixed smile at all times!

About two months ago I called my RA nurse to say I had a cough that had lasted more than two weeks, I was told to come off MTX for two weeks and then continue as normal; do I need to come in and get checked over I asked, no you will be fine was the reply. Carried on feeling really poorly (more than normal!) but carried on regardless. Had a couple of days in bed as felt so bad and had really high temperature. So fed up with going to the doctors only to be told I’m fine that I did not bother.

On Friday the 7th my husband called NHS direct to get help as the pain in my bones was unbearable; he kept asking was it the return of RA and I said no this is completely different. NHS direct called an ambulance, at this point I was still saying this was wasting every ones time but was taken into hospital anyway. Within a couple of hours I had been admitted after being told I had pneumonia and pleurisy.

I actually felt very angry at being told that, as the pain I had was the same I had been to the doctors with some months ago and I was told to avoid fatty foods as it might be my gallbladder, so goodness know how long I have actually had pneumonia for.

I was in hospital for four days at which point I made it very clear I was going home regardless, as my children were getting very upset.

Feel completely wiped out and not able to do much at all.

The point I want to make is that sometimes we just need to be a bit pushy and insist that we are taken seriously, A diagnoses over the phone from our RA nurse (because the RA consultant can’t be bothered to speak to you) is not good enough.

As I say an out and out moan!

10 Replies

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  • I am puffing in disgust at what you have been and are going through. Exasperating, and you are right to feel angry, i am so sick as well at being fobbed off. Our time is limited as well, it is so difficult to get to talk to someone, doctor, nurse, receptionist even, never mind seeing them. I actually think this year coming is going to be worse (sorry to be so pessimistic) but already cutbacks have made it impossible to speak to anyone in rheumatology except for an hour on a monday afternoon. When i ring it is always engaged.

    I am so glad the kids have got you home even though you are feeling poorly, I am sure they will try to look after you hand and foot. My little one massaged my foot last night (it was pretty awful) but she tried so hard that I had to tell her that her hands were magic and they made everything so much better.

  • How lovely, children are wonderful and I think keep a lot of us going through the tough times.

    I have actually called the dr again today as I'm getting pain in my left lung and wanted to confirm it was just refered pain. I was told to call back in the morning when they would make an appointment for a dr to call me to see if I actually needed to be seen and if so they would fit me in but they are full until the new year! Great! x

  • I agree with mads on this it is absolutely disgusting to treated that way.You need to contact pals and put in a complaint as that isn't good enough. I get fed up of being told every ache or pain i have is either ra/fibro or related to the drugs i take. I am off to the drs tomorrow and i bet i will get told it will be ra/fibro, when my breathing is bad and my eyes ache like hell.

    Hope you soon feel brighter. Love sylvi.xx

  • Yes I agree too, dreadful treatment, something that is chesty needs looking at not just a nurse on the phone. To think if someone had listened in the first place this all could have been avoided.

    Hope you feel slightly better after your moan.

    Bless your little one Mads for trying to help.

    Hope you feel better soon Mel

    Mary

  • Absolutely terrible, it is so sad we have to fight our corner, rheumatology poorly funded well in my NHS Trust !,any further problems skip the nurse on phone and go to GP you were / are obviously very poorly.. get well soon xxx

  • Thanks Alison, as you'll see from my reply to Mads, GP not much use either! Guess I'll just get on with it and hope for the best. x

  • Definitely a cautionary tale. I think its very easy to end up just putting up with far too much with either RA or with the side effects of treatment, when actually thats not a good idea. I am so glad that you did get proper treatment in the end though.

    So, lesson on not being a martyr and reminder to get anything unusual checked out, even if you do think you are being a nuisance.

  • Dreadful, especially when you tried to get people to listen! But v glad that you did finally get treatment. I've had pneumonia twice, and it took ages to get my energy back. Felt rotten for a long time, so really try to rest up properly so that you give your body time to recover fully. Polly

  • After over a week of trying to carry on I think I've accepted that actually I do need a bit of rest. Children now finished school so I intend to just snuggle up for two weeks with them! x

  • my mam was in agony one year and the quack on the phone said he'd looked at her records and she had a bad back - i had to get an ambulance and she had a kidney stone and a kidney infection!

    i got pleuresy with the last chest infection and i got through the oramorph really quickly for that pain! it's awful, i've had it twice and this time its gone but the first time it lasted for months.

    i hope you feel better soon

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