Jump to content


Congrats to Margaret, Platinum Member with 1,000 posts and 10 Years of Forums Membership!


Photo

Adverse reaction to hospital visit

stress confusion vagueness

  • Please log in to reply
10 replies to this topic

#1 bendofislands

bendofislands

    Bronze Member

  • Members
  • PipPip
  • 12 posts

Posted 06 October 2011 - 05:18 PM

After 20 plus years of Scleroderma I have finally realised that I have an adverse reaction to hospital visits!

I set off from home without apprehension, concerns and feel quite OK. I arrive at hospital still without any negative feelings when I realise that I have become vague, my thinking processes badly affection, my memory is shot, I feel as if I am going to keel over and sometimes do. I have learnt to hide it as it rarely gets me anything but irritation from others.

It is embarrassing and difficult to deal with medical staff as they ask me questions and I can't remember the simplest things. I quite understand why they often react as they do. I tried to explain to the specialist yesterday what was happening and he did listen at least, but seemed somewhat bemused if anything. It is as if I have had a big adrenalin rush and the after affects leave me exhausted and wrung out. It is difficult to have blood taken when I am in that state, and in that state I cannot remember I need to drink a lot of water before hand.

After years of saying to myself that it can't be stress or apprehension (because I see this as a weakness) I now realise it probably is. I block most of the Scleroderma symptoms and try to ignore it in my daily life. When I can't ignore it I tend to withdraw from other people and rarely talk about it. A hospital visit having a range of tests is pretty confronting, as we all know they are continually checking for developments that are going to make my life very difficult.

This introduces another issue and that is when it is necessary to travel a distance and spend the best part of the day within the hospital where can I find a quiet and safe feeling place to rest between appointments? The cost of food in the cafe is very high, and even a cup of coffee is expensive.

Wendy

#2 Robyn Sims

Robyn Sims

    Silver Member

  • Members
  • PipPipPipPip
  • 166 posts
  • Location:Melbourne Australia

Posted 06 October 2011 - 07:05 PM

Hello Wendy and a big welcome to our Forum!

I am sure you are not the only one who has the same feelings regarding your visits to hospitals, albiet just for checks etc.

I am sure you will receive much support from others on this site and look forward to hearing their ideas.\

#3 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 07 October 2011 - 07:34 AM

Hi Wendy,

Welcome to these friendly and informative forums!

Firstly a big congratulations to you for living with Scleroderma for 20 plus years; I'm a comparative newcomer, having only been diagnosed for just over two years.

I think the feeling of apprehension and worry you're experiencing is by no means unusual; I have a friend who has to go regularly for heart and post cancer checkups and arrives at the hospital in a dreadful state; she has been known to have a total loss of bowel control on the way there..... with disastrous results, as you can imagine! ;)

Perhaps it would help if you write down any queries you have to bring up with your consultant before you go for your appointment and when you're in a much clearer frame of mind. Also it can help if you bring a friend or relative with you as sometimes (particularly in the beginning) I found it very difficult to take in everything that was said to to me and in fact, if I was not very strict with myself, I would find myself babbling incoherently as a relief from the tension. Nowadays, I'm not so bad as I've got used to the visits and got to know the lung function teams and the consultants quite well, so I tend to relax, settle down and almost enjoy the whole procedure (I am a bit sad, though and probably need to get out more!! ;) :lol:)

Loki's suggestion of taking a drink in a flask is a good one; at one of the hospitals I go to there always seems to be a lot of people waiting in the outpatient's department complete with flasks, sandwiches, cakes and colouring books etc. for their children, determined to make a day of it! I've included a link to Anxiety which I hope may give you some helpful coping strategies before your next visit. I expect the hospital staff and consultants are used to people feeling worried and stressed and should really make allowances for that; I'm sure my consultant thinks I'm a bit touched but is too polite to say anything about it! :lol:

I'm very pleased that you've found our forums and joined our community and I'm looking forward to reading more of your posts and getting to know you.

:emoticons-group-hug:

Kind regards,

Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#4 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 07 October 2011 - 03:17 PM

Hi Wendy,

Welcome to Sclero Forums! I'm sorry you feel apprehension about going to the doctors and I'm sure that is only made worse by having the complications of scleroderma to deal with. I tend to feel more apprehension on a first visit to a doctor but I'm usually better off on subsequent visits.

Did you know there is a condition called iatrophobia, which is fear of doctors? If it is severe enough to prevent you from going to the doctor when you know you need to, then you might want to look into phobia counseling. Really it isn't any different from fear of anything else -- like flying, spiders, heights, etc. Some of us may tend to develop en route to being diagnosed with scleroderma because of negative initial encounters with doctors, such as feeling that our reports of symptoms are not being believed or taken seriously.

When I'm going into possibly anxiety-provoking situations, I find it helpful to make a list of items and take it with me. If I feel like I might be too emotional or embarrassed about something, I find it helps to write it out ahead of time. Then if I think I might start crying (oh dear!), I can just hand over a piece of paper instead.

Everyone has different levels of dislike, anxiety or outright phobias, so only you can tell if it is at the point where a few friendly tips will help, or whether you need more professional advice.

In any event, thanks for bringing up a topic that I'm sure many of us are curious about!

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#5 bendofislands

bendofislands

    Bronze Member

  • Topic Starter
  • Members
  • PipPip
  • 12 posts

Posted 08 October 2011 - 08:18 PM

Thank you for your responses and your support to my post. This is the same person (Wendy Bradley) but I have been unable to log in under my previous registration despite new passwords etc.

Yes, I also find that taking notes with me to see a doctor is the best way of making sure I remember everything I need to say and questions I need to ask. I have always done this, even if I can't remember the outcomes always.

I suppose I should have taken my own food and drink, and I will try to do this next time. With various aches and pains to content with, and quite a walk too and from railway station I find carrying extra weight not difficult.

Of course it would be better if someone came with me, but there isn't anyone who can spend a whole day out of their life - I also live in a remote area from public transport and the whole business of organising getting into a city hospital for a day takes a lot of organisation. I know other people in similar situations and we have talked about it.

Yes, I will remember that there will probably be a chapel or somewhere within the hospital and I will try to locate it and at least have somewhere quiet to withdraw to.

I am certainly grateful that support is available at the hospital, and I don't for a moment expect special treatment. It is simply the frustration of going in feeling well and coming out feeling shattered that is the problem. I work hard to feel well to try to live a normal life and it is frustrating to find I don't cope as well in some situations as I would like.

Thank you again to those who responded.

#6 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 11 October 2011 - 04:36 PM

Hello Wendy

I am sorry you have this to deal with this because going to hospital and back again is enough in itself! Then you have to deal with medical staff once you're there! Could you speak to a consultant about it and have something permenant put it your notes so that at least the medical staff are aware of it?

I would also take the pressure off yourself by accepting the fact that it's okay to NOT cope well in situations. I mean come on, you live with scleroderma and that's enough for anyone to cope with so cut yourself some slack girl!

Take care.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#7 bendofislands

bendofislands

    Bronze Member

  • Topic Starter
  • Members
  • PipPip
  • 12 posts

Posted 13 October 2011 - 01:13 AM

I am feeling much better now.

Because I live where I live none of the hospital services like Red Cross drivers are available. My point is that I think I am fine, managing and in control and it is only when I get to hospital, and then only some occasions, that things fall apart. I have tried to explain to specialist as I did this visit, but they don't really 'get it', and think telling me in short words and sentences why I need to have tests done will do the trick. (Unkind of me but the subset I hear is "Poor old thing, not coping, not very bright, needs to have things explained clearly etc etc) This is not about the logical mind but about some sort of emotional response or more likely body memory of a lot of very unpleasant tests in past. I know what they are telling me already, I tell myself the same thing. I believe now it is stress that gives me these reactions, but it certainly isn't something I seem to have much control of. Maybe as the specialist started to say, it may be related to Scleroderma, just another bizarre thing that happens as part of the disease. I refuse blood tests or any invasive test at times because I know my own body and know they won't get a needle in as my veins as they just close down. Further attempts cause me pain and do no good. My dad suffered this reaction as well. When I am OK I use a form of disassociation and this will usually work, but if I have become 'vague' then I am unable to do this and it doesn't work.

I have to say when a patient at the Royal Free (UK) they were interested in this reaction and concerned, and on one occassion put me straight into a room and ran a lot of (non invasive) tests on me to try to work out if it was as simple as my blood pressure dropping suddenly, blood sugar levels, heart doing something strange, but they were unable to learn anything useful.

I don't want to call on people for help if it can be avoided. I do not identify myself as 'sick'. When the disease plays up I do need help but have not found it easy to access. What I need is to be able to call on the help without any of the 'assessments', paperwork and other frustrating things that usually mean I give up or it comes so late I no longer need it. A few winter's ago I was living alone here, quite isolated, unable to drive and unable to articulate what I needed, having to carry heavy firewood to keep place warm. Appeals to various organisations asking for help required many phone calls to people who were rarely available, finally being told I MIGHT be eligible for two or three hours per fortnight after they did an assessment. At that point in time, 2-3 hours in the future was useless, as I needed someone there that day and the next day. I just cried and managed as best I could. Yes I can ask friends, yes I can ask what family I have, but most people are a long way away and at such times I find it very difficult to articulate what I need for as well as physical symptoms of pain, fatigue, I have mental confusion.

Oh dear I sound like an old grouch! I am usually cheerful, positive and enthusiastic to make the best of my life, but every now and then I can't do it anymore.

#8 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 13 October 2011 - 06:02 AM

Hi Wendy,

I'm pleased to hear that you're feeling a little better now.

I can empathise with you as I also can't bear to think of myself as being "ill", having been fortunate enough to have excellent health all my life before I developed Scleroderma. It's taught me never to take my good health for granted ever again! ;)

I can understand how difficult it must be for you to organise help when you really need it; I believe the same thing applies in the UK and I'm sure it does put off a lot of people from asking who could really do with some assistance.

One good thing, however, is that you've found our forums and you can be assured that there will be a sympathetic ear and broad shoulder here for you, should you need it!

:emoticons-group-hug:

Kind regards,

Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#9 Robyn Sims

Robyn Sims

    Silver Member

  • Members
  • PipPipPipPip
  • 166 posts
  • Location:Melbourne Australia

Posted 13 October 2011 - 06:13 AM

Hi Wendy,

I hear what your saying Wendy, yes getting help can be harder than managing yourself.

It seems that you have more than "brain fog" when having hospital visits. The emotional reaction to stress definitely causes physical reaction. So many people with scleroderma have told me how when faced with a stressful situation they immediately have an attack of Raynaud's as the body sends the blood to the internal organs.

I hope you have received some comfort from all our friends at the ISN.

Thinking of you

#10 bendofislands

bendofislands

    Bronze Member

  • Topic Starter
  • Members
  • PipPip
  • 12 posts

Posted 13 October 2011 - 06:00 PM

Thanks to you all out there for support. As we all know, keeping up a good face for our family and friends is important. They know vaguely that I have scleroderma but most (not all) don't really understand how it affects my life. Fingers go numb in cold, well just put on some gloves seems to be the typical level of understanding. I don't want them to know really. When they see me at odd times in real distress, family members get a bit frightened and keep asking me if I am okay. Well, of course I am not okay. At that point they want to rush around and make me hot water bottles and cups of tea, but really useful assistance on an ongoing basis is not something they understand I need - I always manage and they interpret a lot of what I say as 'letting off steam". Letting off steam is useful, perhaps essential - a forum like this allows us to do it without feeling we are complaining, or worrying people.

I say again, for 90% of the time I am able to work around scleroderma without really letting it affect my life too much. I am such an energetic person, always involved in something new and interesting, that is when I am out and about and okay. Most people just don't believe I have anything wrong with me, let alone such a confusing disease with so many aspects. I prefer it this way as it means I see myself as this well person as they do, and when scleroderma symptoms overwhelm me I retreat and barely see anyone, so the pretense there is nothing wrong continues by my choice.

#11 Robyn Sims

Robyn Sims

    Silver Member

  • Members
  • PipPipPipPip
  • 166 posts
  • Location:Melbourne Australia

Posted 13 October 2011 - 10:09 PM

Hi Wendy,

After reading your last post it seems that you may pop up from time to time when feeling down and frustrated. We can deal with this!!!

Warm regards