Phobic about hospital tomorrow :(

Everyday living
1

I know some may find this a little odd, as some of you welcome your chance to see the neuro, and only wish the opportunity was more frequent.

But I am absolutely phobic about it, and it hasn’t got any better in over three-and-a-half years since diagnosis.

I’ve got my routine six-monthly review tomorrow, and, as usual, am having to wrestle a strong urge to just ring up and cancel.

I already feel sick, and have done for a couple of days, and all my symptoms are worse. I actually feel the appointments do more harm than good, because of the dreadful state I get myself into.

Nothing horrible or untoward has ever happened at the appointment - I think the worst and only thing has been the dreaded neuro exam, where, by definition, you are asked to do some things you find very difficult (stand on one leg with eyes shut, etc.) But I have only been put through that once since diagnosis, so there is no particular reason to think they’ll suddenly want to do one tomorrow, after more than three years. Most visits have been a chat lasting less than two minutes, and did not involve an examination, or any major decisions about anything. So I know it’s likely it will be much the same tomorrow - why do I want to throw up?

I’ve been so excessively anxious in the past, I’ve been recorded as having a tremor due to the MS, which I do not actually have, but was in fact due to me physically trembling from nerves.

Even though it’s only once every six months - occasionally longer - I keep wondering if it’s worth putting myself through this, especially as the outcome is usually pretty neutral anyway: “OK, we won’t change anything, and see you again in six months, unless you contact us sooner”. It’s not that I particularly want them to change anything - I’m all for leaving things well alone, unless there’s a pressing reason not to. So I’m not complaining that the appointments don’t lead to anything radical.

I’m just wondering if they are worth all the angst - which I admit is self-generated. :frowning:

Wonder if hypnosis or something would help?

Tina

x

2

Hi Tina,

Is the anxiety simply because it’s a hassle getting to the hospital and a break from your normal routine? I say this because I get anxious at any unwanted change to my routines.

If I know I have any significant dates coming up, could be anything from gp/hospital appointments to going out with friends I get so anxious and am relieved when it’s all over and I can return to my normal routine.

3

Hi Fudgey,

I do think that is one aspect of it, yes. I don’t drive and am reliant on public transport. I always set off in good time, but once or twice the bus has not turned up, and I’ve still been stuck at the bus stop ten minutes before the appointment (when the journey is over 20 minutes). I’ve had to call on the mobile, and say I’m not going to make it. So this definitely adds to the anxiety.

But I think I’m also phobic about the whole thing of going to the hospital. I find the place depressing, I get anxious about potentially being asked to do things I can’t do (like the standing on one leg bit). I even get anxious about stupid things like whether I have body odour or my breath smells, because they get so up close and personal when they examine you. I spend ages flossing, gargling, and deodorising before I set off, and most times there’s not even an examination!

Tina

x

4

I get the same Tina, so I do sympathise. In fact I think you consoled me last time I was anxious about a neuro appt! Just remember this time tomorrow it will all be over. Maybe if the neuro knows how much these routine appointments unsettle you, it could be arranged to reduce the frequency or even make sure it’s at a good time of day for you. If he/she knows it might take some of the anxiety away? Just a thought, best of luck. Lx

5

Thanks L, it’s reassuring I’m not the only person who gets this disproportionate anxiety. I am a naturally anxious person anyway, although I do realise this, too, could be part of the MS. Like Fudgey, I’m also like it with nice things, although not quite as bad. I’m meeting a former work colleague on Saturday, for the first time in over 10 years, and am in a state about that too. I only really have two plans for this week - hospital, and the meet-up with the friend, but already it’s feeling like a heavy week. Tina x

6

Hi Tina have you tried Rescue Remedy. I use it as I was terrified of the dentist and worked myself into a frazzle. Since using it (maybe placebo effect!) I am better able to cope. Think I may well use it again as I am due to return to work tomorrow after a month off. Do hope your week goes well.

7

Hi Tina, Sorry to hear how anxious the build up to your hospital appt has made you feel. I was thinking there must be others (MS or not) who have a similar experience re hospital appts. I wonder if not attending for regular review would result in being discharged? How often MSers are reviewed seems to be variable and a bit of a post-code lottery. Some people on this forum have even been discharged & don’t have any contact with a consultant or nurse. I would be cautious about saying you don’t want to have the reviews in case they discharge you. It may then make it harder to be seen if you need help at some point. Do you have anyone who could go to the hospital with you? Perhaps arranging this in advance would help you feel less anxious about travelling there? I hope you get through it and it’s not long before you’re feeling more like your usual self. Best wishes, RedShoes x

8

Hi Dinks, Actually, I think I do have some Rescue Remedy - somewhere - but I think it’s the night-time version, although I can’t see that being a problem, as I think the only difference is it doesn’t contain alcohol - which, if I’m worried about how my breath smells, is probably a positive thing. I never thought of using it for the hospital. I usually just pop diazepam, which I am already prescribed for both anxiety and spasticity (by a lucky fluke of nature, it treats both). I don’t have anyone to go with me, and think that might actually make me worse. Unusually, compared to most people, I am not strengthened by company, and tend to prefer dealing with stressful situations privately. Classic introvert, I guess. :wink: Tina x

9

Oh, sorry, Dinks, I did mean to wish you good luck for your first day back tomorrow! Also apologies for rolling two replies into one, and making it seem like they were all to the same person. Tina x

10

Tina Would having a purpose to the visit help / hinder ? I have 6 monthly visits and see each visit an opportunity to educate the neuro on the problems I am experiencing in preparation for my conversion from DLA to pip. The dwp will need info from my neuro and each visit will put notes on my records that the dwp can use to make the right decision. Trust all will go smoothly Neil

11

Tina,

How awful for you. It is stressful going to hospitals and appointments.

People have made good suggestions like rescue remedy.

Do you write down any questions/symptoms you’ve had since the last meeting? Maybe you’re anxious because you might forget something?

Treat yourself to something once the appointment it over - a nice coffee, a cup of tea or a magazine. It will give you something to look forward to once it’s over.

As for meeting your friend, she’s probably as nervous as you are- bet you have a good laugh about what you used to get up to all those years ago. You may look a little older but you’re still the same person.

Hope appt goes well and enjoy meeting your friend.

let us know how you get on.

Jen x

12

Wow Tina, what a coincidence… I’m also seeing a friend on Sunday who I haven’t seen for 9 years !!

I am very worried about it as I have put on so much weight over the years whilst she’s lost 3 stone ( found out on facebook) and I now have MS of course. So I’m going to feel very ugly.

Also I’m having MRI with contrast the next day and then I’m back in hospital on the Friday for 6 hours whilst I try Gilenya so all in all I am feeling very anxious and will be so looking forward to it all being over.

I can fully relate to how you’re feeling x

13

Thamks Folks,

Sorry, I’m going to cheat again, by trying to answer several at once.

Firstly, Fudgey - Yes, what a coincidence about resurgence of old friends! I too am worried about looking ugly (mine’s a he!) Ten extra years aren’t kind to anyone, but I don’t know how much, if at all, my ageing process has been accelerated by being ill as well. Up until a couple of years ago, I was flattered to be mistaken for at least ten years younger than I am, and to say people were astounded when they learnt I was ill would not be overstating it! I’m not sure the same is true today. I mean, I’m not obviously disease-raddled or anything, BUT I think passing for a much younger woman is finished. I look my true age (late 40s). I suppose I should be grateful it’s no worse. I was shocked to learn my friend is now 57, so he must be wondering, too, what my reaction will be. I’d always known he was a bit older than me - not sure by how much exactly - but strange to think of him now being 57. How did that happen?

Anyway, fingers crossed for both of us, on our respective reunions this weekend. :wink:

Jen, no, it’s not anxiety I might forget anything. I don’t have anything I want to say or ask, which I suppose leads on to Neil’s point about whether it would be useful to have a purpose. Yes, it would, because I think part of the problem is feeling I’m having to endure it for nothing - I get the anxiety, but no real benefit to convince me it’s all worth it. I’m not even claiming or trying to claim benefits, so I don’t think it even has evidential value. In any case, the write-up of the event always seems to emphasise how well I’m doing. Which is great in one way, as nobody wants their neuro to be shocked how much they’ve deteriorated. But as far as the DWP is concerned, these notes certainly wouldn’t lend weight to any future claim, as they invariably paint any issues as minor. I think there’s even a chance they would undermine any prospect of success.

I guess my only reason for continuing to attend is the worry that, as RedShoes suggests, I might be discharged if I didn’t, and have to go through the pallaver of re-referral if I ever did need to see anyone in a hurry. You just never know what’s round the corner. But at the moment, I feel very little is achieved by my visits, except to increase my stress levels. :frowning:

I’m even off my food today with it all. I think I’ll want a great big fry-up, or great big chocolate eclair, when it’s finally over.

T.

x

14

Hi Tina

i don’t think its odd you have my sympathies i hate hospitals , im learning coping skills

& breathing techniques to deal with anxiety as part of the ptsd google breathing techniques

& take your pick hope it goes okay & you keep the strength to go , i got small procedure on

20th im c&85674g it too

sheep x

15

Hi T, as others and you yourself have said, the past horrendous probems you`ve had in just getting to the hospital, no doubt have left a mental scar on you. I recall how rediculous it was at the time and how upset you got.

Ive said this to you before and i know you dont really think the same as i do, but I think it is a god idea to have regular/recent neuro visits for the DWPs info.

I see medical outings as a trip out, as I dont get many chances to people watch!

luv Pollx

16

Hi Poll, Just posted an update about it further down, so won’t repeat myself here. I don’t qualify for anything from the DWP, and have no dealings with them, so that is not a strong reason for me to keep having appointments. Obviously, if things deteriorated to the point I might be in with a chance of claiming something, I can’t think think Neurology would refuse to see me and comment. Yes, it has been ridiculous in the past trying to arrange transport - and that is for someone not seriously disabled. I’ve been left 'til 5 p.m. the night before, still not knowing if I had transport next morning or not. I took the bus this time, but the day may come that is no longer a practical option. :frowning: T. x