Had my appt at London Bridge yesterday and I'm a bit down. Dr T was very nice but I was so stressed by the journey (Crewe to London on the slowest bloody train ever!) Then the stress of getting GF bite to eat in Euston....underground, crowds, pain. Well, to cut a long story short, I was a pillock. I didn't look at my notes, talked rubbish and I am so annoyed with myself. My darling B was so supportive and said I got everything across but just didn't. I've only just got out of bed and I'm replaying the appt over and over. Dr T was very thorough and ordered so much blood which was taken with ease! Even me with my tiny veins that bugger off at the first whiff of a needle. And a widdle sample 😊 Dr T examined my joints (hands were battered yesterday) but my shoulder blade was so sore (new for me) but then again, sleeping in a single bed night before wouldn't help. Fibro myalgia was mentioned as was connective tissue but he wants the blood results back before making a diagnosis. I did take the ones I had with me and he didn't seem that bothered by them. Because I didn't tell him everything, on way home, I emailed his secretary with a copy of my notes and apologised for my verbal diarrhoea...I see DR T next week and hopefully I'll be a bit more relaxed as I think we need to stay over. I'm so annoyed with myself and feel so down.
Back off down M6 in a bit to see MIL. stay in a single bed tonight 😲😲😲
Sorry for the pity party but I'm sooo tired today.
Charlie xx
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Charliebear68
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Not surprising and very much allowed I think. I have made it a rule that if something has to be done right after a journey - has to be travel one day, "thing" the next. Travelling back is less critical - I can die at home for a few days where it doesn't matter.
I've suggested to people in the past to make at least 2 sets of notes plus a page of bullet points, prepared well in advance, so they can have one and the doctor the other. Then you KNOW they have seen EVERYTHING from your point of view.
Yes, two sets of your notes is really good advice. One for you and one for doctor. Then they have it in black and white too and they can't forget your main concerns.
That's was also good advice from PMRpro. I stayed over the Thursday night before my appt, then had appt the next day at 11.30am, then travelled home. Spent Saturday and Sunday at home recovering. I was really wiped out and had the biggest cold sore ever come up in the Saturday morning. It's just healed after 3 weeks. Such trips used to be a breeze and exciting, now too much physically and emotionally. But still worth it for me. I'm sure it will be for you too. X
Oh dear...😔...am vvvv much feeling for you! Am vvvv much relating to the whole thing. but your plan is a good one...and Dr T is paying you close attention. 👍👍👍👍
I feel for you , i never think i get everything across either ☹️. I flew to London last weekend to meet up with my son and i still haven't got over it . The worst thing was the millions of steps in and out of tubes and the thousands of people rushing everywhere it was exhausting. Put your feet up this weekend and relax . My huband always tells me not to sweat the small stuff xxxx
Hey I bet it wasn't half as bad as you feel it was C.
And at the end of the day, you're not a professional patient who gets paid to do this for a living (if only eh?!). You're a real person suffering from chronic illness - so if you talk a lot and don't play it like you're in a west end stage play - then that's because you're a real human being who just wants a diagnosis and treatment that you feel confident in.
And anyway you will get another chance to be less nervous and more focussed very soon. If he's a good doctor he won't be fussed by your fluster- he will be used to it and understand how nerveracking it all is. X
Oh poor you, how tiring. It's easy to feel like a clot after an appointment! Emailing the info is definitely a good back up plan.
I always give my consultants a brief synopsis of what I need to tell them, and sometimes send it prior to the appointment. I think they are used to it now!!!
Rest, rest and rest again and at least the results of the blood work will aid the next appointment.
Hey we all have our down days, the first step to getting past is is all up to you! But this group will encourage and support you through it! I'd say you were thorough enough with this new doctor! Let him take the wheel. It doesn't mean you won't worry or be down about it. But having a doctor listen even if they didn't seem too concerned is a start. And the fact that they got your vein!!! That's big. My son has a port and tiny blowing veins all the time. Look for the small stuff that brightens your day. Like the GF that is so supportive for you! That's a treasure! You may not feel up to par...and that's okay. One day at a time. And that you managed all this and sent an email to the nurse is a big jump in the right direction. Now to hope they see something (or lack of something) in your blood work so that this Doctor can give you some answers! Hang in there!!!
I did the same at my appointment this week. I blathered on about nothing. But I'm thinking maybe that isn't so bad so she could actually see my issues of brain fog in full action.
Oh Puska! I'd not thought of that! I'm sure that they're used to this - I can be quite calm and coherent but I was like a cat on a hot tin roof, jumpy and oh God...just remembered, I nearly fell over through the curtain. Ah well, perhaps we should take each other to our appointments!!
Thank you for telling me, it's good to know that we're not going through this alone.
Don't beat yourself up - I'm sure you did much better than you think! Bottom line is... You got blood drawn (and by the sound of it, the rheumatology gamut is being tested) and a physical exam performed. The hardest part is waiting for the results.
Instead of dwelling on the appointment, pat yourself on the back for taking that trip - as hard as it was on you and your body! You DID it!! YOU got into see the doctor, he listened to you, and I'm sure he will read the notes you sent.
Your support and advice means the world to me. I thank you for your lovely messages. I wish I could answer your messages with a bit more sense! Brain fog is particularly 💩 at the minute! I cried yesterday but today I'm back laughing - primarily at myself - put my eyebrows on with purple pencil...duh!
I couldn't do this without you guys - you are all amazing.
It's a HUGE ordeal travelling a long way and seeing a new Consultant!. I used to do it regularly and it's tough. I'm with all your other replies that I'm sure it went better than you think as he's taken lots of bloods!. He sounds very thorough and easy to talk to which is what you need. You were fantastic to think of emailing his secretary with your notes. I wouldn't have thought of it so HUGE pat on the back . Good luck for next week and your results. It's good your not waiting long for a rerun which you will be great at!. Your having a tough time so lots of TLC when you can. Fingers crossed for you X
Hi Charlie, I've only just read your post, everyone else has said it all so I'm just going to send you lots of hugs and hope your follow up goes well for you and you get some answers.
Hang on in there, you're doing really well and most importantly take it easy when you can.
For future reference, you'll find gluten free food in the borough market street food section, just a short walk from the London Bridge clinic. I had a very nice curry there. Also if you can't wait, South Indian food in Drummond St next to Euston station is great. Lots of non-gluten possibilities as much made with gram flour or rice.
Oh and I take lots of healthy snacks and water every time I have a long trip out. I just munch my way through it basically. Good luck with your next visit. Definitely worth it to get the best care,
Writing down notes and questions to take to an appointment is a great idea. Last year we published a blog article about getting the most out of your medical appointments which you may like to read here: lupusuk.org.uk/getting-the-...
Don't beat yourself up, there's only so much the poor brain can cope with - any change in routine would affect a healthy person, let alone an ill one. Add to that the effort and energy you had to spend negotiating travel and the heightened expectation that the appointment is an important one and there's no surprise that by the time you got to see the guy, details got forgotten.
Try not to punish yourself for it, your body has done as much as it could in the face of so much happening at the same time.
Thank you for putting it like that - I do beat myself up because of the frustration! I used to do a monthly commute to London regularly and forgot how stressful that was! I've got a plan in place for Thursday...A: not to get overly stressed B: stay in hotel and C: read my notes!
Thanks for your lovely message - I feel so supported and that is quite overwhelming 😘
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Lupus , had general anaesthetic yesterday feel like I've been beaten up today???? Why!??
Needing a bit of a talking to...........
LDN not a magic cure for me
Taking my own advice
This is a call out for. Do you feel down after your 3 month rheumatology review for Lupus?
