I'm Chancing Going To A Wedding Tomorrow In A Chair...

[Lette]

Hi folks,

I guess I am writing this to get advice on how best to go about my day!

Previous to getting Pots I was asked to do a wedding photoshoot (I am a photographer) and then I got ill and now the wedding is tomorrow! Luckilly, My husband is my partner in crime and he will do the photoshoot for me, but as the couple are also friends, we have been asked to the full wedding anyway and I have been looking forward to it. As its only been 3 weeks since being diagnosed and on the meds, I am still fainting when I stand for any length of time over 10 mins or so, so I have hired a self propelling wheelchair for the day so that I can go and hopefully wont have to worry about fainting... I am still aprehensive though as this will be the first long haul social event I have been to since being diagnosed and I dont know what to do or what to expect.

Have any of you managed a social outing like this in a chair or otherwise, can you give any advice to minimise any events of fainting or bad reactions? I really dont want to take any attention away from the happy couple!!

The day will be spaced nicely enough, Starts at 3pm in a registry office so that will only be 20mins unlike a full church wedding. Then dinner out in a reputable local restaurant. It will be 4 hours until the reception party after this and its the duration I am worried about. 8pm the party only starts and I fear I may only be able for about an hour of it if so I will have to go home.

Thankfully the couple know and understand fully the story with the day and that I may need to go home early, they are great about this but if there is any advice you may have to save my energy and strength I would greatly appreciate it

**Just to add, I have never needed a wheelchair for anything in my whole life, I am worried and slightly embarrassed about this as I know theres nothing wrong with my legs and others know this, but I do faint and thats why I need it, I guess I am worried about what others think (screw them I guess but still I cant help but dwell on it!) also are chairs easy to manage?!! O_o

Thanks in advance!!

[Godsgal]

Hi there....I know what you mean about the wheelchair. When I first had this come upon me in December I still felt like I could go out and do the stuff I had been doing before. But I kept getting near fainting episodes and feeling really ill over a really short outing. I finally gave in because feeling better and doing more became more important than caring about the wheelchair. I'm young and I have little ones. My friends and family had never seen me in a wheelchair either but it got to a point where I needed it! I was paranoid in the beginning about it but people are usually very accommodating to people in wheelchairs and that was nice. If anyone asks, say you faint if you stand or walk for too long. Your autonomic nervous system isn't regulated. That one gets people thinking too! I have a really lightweight one and I use my feet to push myself around (it doesn't have the wheels). I probably look ridiculous scooting myself around like that but I'm over it! There are a lot of POTSY people that use wheelchairs so please don't feel strange about it.

Go to the wedding and enjoy!! Take the wheelchair out in public tonight and break yourself in a little bit. Our own preconceived notions, fears, and thoughts about wheelchairs come out when we ourselves start using them. When I first started using one, I was so paranoid people were judging me, accusing me in their minds of not needing one, or that I was some kind of invalid because I used it. Absolutely not!!!! We use it because we have a rare condition and it prevents us from being uncomfortable or having all out and out syncope.

Take care and have fun at the wedding! Congratulate the bride and act like it's second nature to be in the wheelchair!

[Godsgal]

One more thing! Would it be better to be in the wheelchair at this girl's wedding or not use it and risk the ambulance being called or you being miserable?

Try not to worry with the wheelchair. Take care and have fun!

[potsgirl]

I've also had to use a wheelchair on occasion, and I've been embarrassed, too. You have to focus on what's important, though. Attending the wedding and sharing the joy with your friends while keeping yourself safe and not making a scene at their wedding by fainting, or not going at all? I think we imagine many more people are looking at us and being judgmental when they're really not.

Go! Have a great time, and let us know how it goes.

[corina]

hi lette,

i elt embarrased too at first and then was so glad to be part of life again! jus a few ideas to help you get through. having your legs raised a few times through the day (for about 10 minutes or so) could help, as well as a bottle of water and some salty bites hidden in your wheelchair. try not to worry just enjoy being able to go in the first place! (i know, it's easier said than done, but once you get over it it will be much easier),

corina

[Lette]

Thank you all so much for getting back!! I went and I just about survived while I was there, I didnt last the whole day though just making the registary office and the dinner after, I didnt make it to the after party as my husband and I both assessed the situation and I had been out about 6 hours and I was feeling terribly tired and heavy headed so we decided to bring me home and a good jub too because when I got back home I crashed and burned out for the rest of the evening, bearly being able to get out of bed to make it to the loo!! My Bp was reading quiet low too, I am normally in the 90's over 60's but last night I went down to 86/51 which worried me slightly as I had eaten well during the day and was well hydrated but feeling really bad after getting home.

It was a beautiful day though and it felt great to be out although my own preconceptions of wheelchairs came into account! We parked the car and firstly decided to go through a shopping mall as I hadnt been out in over 2 months. I noticed quickly how inappropriate the clothing isles were, being so tight together I was prevented from bringing the wheelchair to everywhere I wanted to go but my better half was super and pushed me almost everywhere as he was worried about me overdoing it with the self propultion though I did find it fun but tiring!

I found I was very self conscious of how others viewed me and though my husband and I were the photographers for the day, because I couldnt get up and be where I wanted to be with the camera and zoom lens, people kept forgetting I was there and stood directly in the way of my shooting, it was so annoying but I understood too that I was so low down people would just forget I guess. Also street access isnt what its cracked up to be and at one stage it was funny and we both laughed, but on the way from crossing the road up over a kerb that looked ramped, the wheelchair stopped dead and I kept going nearly falling out!!

The restaurant wasnt set up for wheelchairs at all and I had to be left in via the back entrance in order to get downstairs to where the reception was, I also noticed that there were no wheelchair toilets and it was lucky that I could walk the little bit to get in to one of the tiny cubicals! Food was fab though and the staff were very good to me.

All in all I had a lovely time and being out for the first time in 2 months felt wonderful, I will be getting a chair again if needed and I wont feel so bad about it, ill just have to wait for my specialist appointment to ask if I will need to buy one myself or if I should just keep hiring, though they are not easy to get.

It was a cool and very different experience and though I was very self conscious, the freedom was so worth it :)

[Noreen]

Lette-

So glad you were able to enjoy some of the day with your friends.

Your signature states you are on 7.5 mg midodrine daily. Is this once a day? I ask because your low blood pressure would seem a good indication to up the midodrine perhaps to 10 mg 3 x day.

hope you are resting well after your excursion.

[potsgirl]

Lette~

Your photography is terrific. Can one actually get married in some of those timeless castles/fortresses? I loved the wedding photos. Do you have the ones up from this wedding? Great job on going in the wheelchair, taking pictures, and staying involved. You give me hope!

Cheers,

Jana

[Lette]

Hi there, yes I take oe 2.5mg 3 times a day, I will be seeing the specialist on Monday so he may up y meds then :) Im doing nothing but resting as I ended up back in hospital on Monday after fainting 7 times and stopped breathing, it was all very scary but resting up now and doing well again

[Lette]

Thank you so much for checking out my pics :) Yup there are many old churches and cathedrals here in Ireland people can get married in :) I will be adding pics of this one very soon ;)