Help! My Child Is Getting Married Soon And I Don't Think My Pots Can Cope!

[sue1234]

My brain wants to participate in all the pre-wedding stuff, like the showers, and then of course, the wedding itself. However, I have pretty much been almost a hermit the last 7 years due to the anxiety my low blood sugar AND my POTS causes. Realistically, I always have anxiety, and Xanax can only control so much. It will NOT prevent physical stress, such as standing and uncomfortable sitting positions.

I'm in a quandry. I know from 7 years of experience, I do not do groups well at all. How am I going to get through the shower? If I could sit in a corner, that would help a tiny bit, but I am going to have to appear social. Just speaking too much makes me flush, then I get short of breath, and you all know what happens when the flushing begins.

And, then the wedding itself. I have no clue how I am going to do this. If it were totally not an issue, I would just stay home. It is not worth the galloping heart rate, the flushing, the feeling of being on the edge of passing out, and the mental anxiety. There is not going to be one minute that doesn't feel like physical and mental torture.

Has anyone had to endure this, and HOW do I do this?

[Dizzysillyak]

Congratulations ! What an exciting time for a mother.

I understand where you're coming from tho. I've been sick for 23 years and have endured many

social events for my kids. I know more now than I did so maybe I can help.

On the low blood sugar, have you

experimented with eating or drinking something super sweet like hard candy or orange juice

every 15 - 20 minutes ? I'm finding that if I do this I'm not feeling the dips I was before. This

is especially true if I'm active, like walking or doing laundry. Keeping this up is critical for me.

Flushing is a mast cell symptom but I'm not sure if oi alone does this. Have you tried mast cell meds

or supplements yet ?

Tc ... D

[roxie]

First, congratulations! I'm sure your happy even though it's stressful.

A couple years ago a friend of mine got married and asked me to be a bridesmaid. I was thrilled she wanting me there after all I've been through in relationships It terrified as how I was going to do it. Attending a wedding is hard enough being a bridesmaid is so much harder.

I had to be honest and upfront about my limitations ans I still overextended myself bc I simply wanted to be included. I think a lot of it has to do with those around you in your family and the accommodations they are willing to make too.

For my friend there was almos a year to think and plan. I wasn't able to do a lot of physical planning but I did things online like looking at locations, decorations and things like that then sending to my friend.

The shower was thrown by her older sisters, I only has to show up and I pretty much stayed at the brides table. Can't help you much there.

For the dresses, we knew the designer and I picked out my top 5 online, called th store to see if they were there and then scheduled a time to go so trying on dresses was pretty fast. I did that for the scone trip do dresses as well.

The fitting, gosh, I had gotten a stomach but a month before the wedding, it was terrible. I called the tailor and explained. She agrees that if i put the dress on and marked where I wanted it altered with pins my mom could drop it off and she would tailor it that way.

For the wedding, I had to skip rehearsal. Then the day i didn't get ready with the other girls bc they got up early and went to the spa. I decided to sleep and then my mom did my makeup laying down and my hair at home.

I got there my friend had talked to the photographer who found this old chair that fit the wedding decor for me to sit in for the pictures, everyone was gathered around me. Like the bride sat on the arm of the chair and it turned out pretty!

The venue had a little room I could lay down in and we decided bc od the standing on the maid of honor and the best man would stand through the ceromony. Actually, I ended up having such trouble getting over the stomach virus I has to use a wheelchair bc the aisle was SO long.

I did a couple standing pics but they mostly worked so I could be seated.

I had told mt friend that I would do everything I could to get through the ceromony and intros at the reception then I could collapse. Running on happiness I was blessed to even eat dinner at the reception. One of the bridesmaids was great and pushed me around in my chair to talk to people.

It was a really special experience for me, Ive struggles with keeping friends and the fact that someone saw me worthy enough even with my limits to want me there meant the world. In the bulletin thingy the bride & groom wrote stuff about the attendants. I had not seen it before wedding (it was a good thing) it said something about "tonya has always smiled through tough circumstance and I'm so happy she's pushing through today."

Towards the end mt friend and the other bridesmaid asked me if i had a little energy left for a surprise. I said ok & the tool my chair, pushed me to the middle or th dance floor and "pretty woman" started playing. They started twirling me and dancing around me. At the end of the songs (ugh, I'm crying remembering it) everyone there stood up and clapped and saying "woot" the photographer got in the middle and tool pics my smile was so big but I was blushing so badly

I was wiped out for like 10 days after but it was totally worth. A really special time that took a lot of planning a lot of honesty & openness with my friend but I think with ingenuity you can find ways to accomplish it and do it. Good luck.

[yogini]

It will be exhausting, but I think you will survive. I had to attend my sister's wedding at my worst and I survived. At that time I couldn't be on my feet at all and didn't socialize. I stayed seated most of the time. Many people knew I was sick. Don't put pressure on yourself to look good, socialize, etc. Make people bring you water. Just stay seated, smile and you will make it.

[sue1234]

Dizzy, my flushing can happen randomly OR when I've reached my standing limit. When the flushing happens standing, I get hot and it's like I just vasodilate all over and feel so lightheaded.

Bananas, thanks so much for telling your experience. I'm glad it worked out for you! I am going to have to set up my reclining lawn chair, as I cannot even sit upright in a chair. As far as family, my extended family doesn't talk about my "illness", as they look at me like I'm a hypochrondriac, so no help there. I've mentioned one time that I don't know how I will manage getting to or through the wedding, and they just say, "Oh, it'll work out. It'll be fine". They think I can "will" myself to do something, but stress has ALWAYS made any of my POTS situations soooo much worse.

[HopeSprings]

Oh I hear you - I felt ill at my own bridal shower (which I did not want, but was forced on me), on my wedding day and at my baby shower (which I did not want, but SURPRISE- suddenly I was in the middle of my baby shower). As bad as I felt then, looking back I'm grateful I had those experiences because had I not, these would have been just more things this illness took away from me. I think you might regret missing these events in your child's life. At my baby shower I was a mess - hot, flushed, so dizzy, overhwhelmed by all the activity, people, and visual stimulation. I told people I wasn't feeling well and a certain point my mother stepped in, announced that I was fading and quickly moved things along. Letting people know I felt poorly took the pressure off me to be peppy and social when I was feeling anything but. In reality it was only a few hours out of my life, I made it through and I have some nice memories from these events. Can you say... I'm not feeling very well, but didn't want to miss this - and then go sit in your recliner with a big glass of water! Or have your child or child-in-law or close relative explain if need be. And like Yogini said, just do your best, try not to put pressure on yourself. This is a difficult thing we deal with everyday- be gentle with yourself.

[yogini]

If there is just one person that believes you and can help you out, I think that would make a difference...or maybe hire someone if you need.

[Dizzysillyak]

I'm too new at defining how I flush so I can't say if mast cell flushing works the same way

as oi flushing. Maybe another mc / potsy will know. I didn't know what flushing even was until late last year.

About the low blood sugar, have you tried what I'm doing ? Granted we're supposed to avoid

doing this but sometimes we just need to cheat in order to live our lives. Since we both have hyperinsulinemia, I thought

it might help you too.

Another trick I learned to keep me going was drinking a tiny bit of coffee with real sugar

in it. Dr myhill recommends caffeine + ribose to her cfs patients for renewing their energy in

an emergency. I think she said that this combo recirculates adp to atp. It's easier to find straight sugar than ribose. I'm seriously over reacting to coffee nowadays so I would only use this as a last resort but this worked for a few years..

Resting as much as possible during events like this helps but for those times when we need to push

it's good to know a few tricks. I have cfs too tho so I'm not sure if you can use what I'm using.

Fwiw, I use klonopin to undo the effects all this kind of stress this puts on my body. Do you have

a treatment for when you're overly stressed ?

[Chaos]

Can't give you any advice Sue, but I'll be right there with you as my oldest is getting married in July. I'm wondering the same thing about how I'll get thru it, but I wouldn't miss it for the world so it's gonna happen one way or another!!

[sue1234]

Thanks for all the encouragement! YAY, I did one of the showers today and everything worked out great! This is what I did:

1. I preplanned. I ate right as I left my house and also packed a sandwich. Being gluten free, I needed food I could eat for sure.

2. I took some Xanax, which I never take in the daytime. I only use it to sleep. I felt soooo relaxed and never got nervous...not once! And I did not take a huge dose.

3. I brought my reclining lawn chair, and set it up where there was a foot ottoman in front of my chair. I propped my feet up and slumped back in my chair, even though I did not set it at a "reclining" phase. It was comfy.

4. I had a Starbucks latte(decaf) to have something "special" for me to sip on.

You see, I have a rational mind that realizes that I have an irrational mind also. The irrational mind knows how POTS can be, and sometimes it can't be controlled. That is when I WORRY about all the possible outcomes of pushing myself.

Today I told the rational mind that as long as I was not going to get hot, that everything else could be controlled, such as sitting arrangements, food for blood sugar and the Xanax for adrenaline control. Now I know I can get through the next shower and then the wedding, as long as the weather or environment is not hot. That I can not work around, ever.

Thanks for the kind support.

[shan1212]

I'm glad to hear the good update! And congratulations on your daughter's wedding!

I haven't had to deal with anything quite like this, but I agree that planning ahead of time is key. Over the summer I very symptomatic and would frequently need to call friends or family to come over because I was too sick to take care of the girls myself. Obviously that was very stressful and I couldn't relax if I didn't know who I could call on any particular day.

Then my husband wanted to drive 8 hours away to do a week-long mountain bike race. Each day he would be riding his bike for 6 hours, stuck on some mountain somewhere without cell phone reception. I was to be with the girls -- in the cabin, or at a park or something. I found this idea very stressful, especially with the concern that the change in altitude would affect me. So suddenly it dawned on me that if we were going to go on this vacation, we needed to get me a babysitter, and that just had to be part of the expense if we were going to do it. I found someone on Care.com, and she came over every day. We even had her come one night and got to go out on a date! It was such a relief to know that if I felt terrible, there would be another adult there taking care of the children until my husband got back, and I even got to enjoy the vacation a little bit because it was less work than my normal life. I'm sure that not having the babysitter would have added to my anxiety and fatigue which would have exacerbated my symptoms . . . it's all so connected.

I'm glad you have your contingency plans -- best of luck with the rest of the events!

[yogini]

So happy for you! Good planning. I am sure having one event under your belt will make the rest easier.