Needing some support tonight

[carolynm]

I went out with "the girls" tonight and stood for 2 hours while we chatted. My pain slowly came back until I left early in tears. My pain had been so well controlled with the Neurontin, but standing that long has me all flared up again. My whole perineum aches as well as the clitoral thing. Ugh. I hate this disease. It is so devastating.

Also, I found it so odd to be in a group of people talking about "normal" things. I almost can't relate even to my closest friends now because I have been to such a dark place with this disease and I won't ever be the same. How can the trivial things others worry or complain about ever again be of interest to me?

Need help on this one. Violet, Faith, Helen, Lernica, Calluna, and all the others, I need your encouragement tonight.

cari

[helenlegs 11]

It's just NOT fair, is it!!!! Sorry I know I should be saying kind things to help you but that is the top and bottom (absolutely no pun) of it Cari. . . . (swear words!!!!) I LOVE nights out with my friends, getting dressed up, getting out of the house into a different 'normal' environment, glass of wine, laugh, chat. . . everything you could and should look forward too, but it just doesn't work like that. I was going to say anymore BUT that will not be the case. . .it doesn't work like that at the moment. I bet you looked lovely too
My compromise is just to go to friends houses and have them come round to me.
Actually I can relate completely as I am going for a girls weekend away this weekend. The old part of me can't wait but I know I am kidding myself really. Kidding myself so much that I thought my piriformis muscle was going to cut me in half the last two nights. I have such a headache today because my teeth have been clenched so tight. I wonder if we get ourselves that bit more anxious which does have a knock on pain effect too. I can't really believe I have come to that conclusion as I am supposed to be the most laid back person, everyone tells me that. I think maybe that was always true, now I do the swan thing and look the same to everyone but am struggling like mad under the surface to stay afloat.
I am thinking aloud but do you take any muscle relaxants? and do you think that would help for this sort of situation? I think if there is a back up, something extra you have got to rely on that could make a difference?
Don't know if I have helped any, talked about me mostly, sorry. . . .all I can say is that I can totally relate and good for you, to be honest for not giving in to the blasted thing and getting out there if only for a while.
I hope your friends will realise the problems too if they didn't already.
Love
Helen

[Skylar]

Hi Cari,

I can relate to how you felt. I don't sweat the small stuff anymore. I have a new appreciation for what's really important.
I asked myself the same questions you did. I was grieving for my lost abilities and the uncertainty of the future. Sometimes it's okay to just let go emotionally and get those tears out. Release the stress and sorrow, like Helen said.
If I can offer some encouragement....I think it's great that you have the determination and courage to get out there in spite of all the difficulties this condition presents. Your friends might not know how difficult that was for you but many of us here do.
Next time remember, we fellow PN'ers are with you in spirit (pun intended)......cheers, Fall Girl

[calluna]

With you, cari.

Well done for getting out there and meeting your friends. And ouch, standing for 2 hours. I know how it sneaks up on you, though.

PN completely isn't fair. It changes your whole viewpoint on life. Pacing is so important, but also it can be really hard, at first it feels like giving in to the pain. Saying, I'm sorry but I need to rest for a bit - in a way it can feel like making a fuss, drawing attention to oneself - but really it is just being realistic and sensible. And that's hindsight again - never mind.

Helen has put her finger on it - this is how it is at the moment. How it is for the time being. Doesn't assume anything about it staying like this, or not.

[Faith]

I'm right there with you Cari. I can't sit or stand for any real length of time. I've been mostly housebound this last month since the worsening of my symptoms post botox. It is extremely hard I think for me to have friends right now. The trivial things of life (new kitchen appliances, kids' soccer games, travel plans)just don't matter any more, do they?! And actually I count this as a blessing. This painful condition has allowed me to look beyond myself and this world and find the true purpose for living. My eyes have been opened to suffering like never before and I have a new empathy for people suffering with many different plights. I am grateful for this even though of course I get tired of dealing with the constant pain.

It is extremely hard to feel socially disconnected though I know. I don't live near my closest friends anymore, but the friends I do have often come to my house to chat or I go over to their house so I can "side sit" or lie down. They are getting used to seeing me ice my crotch or have my TENS unit connected to my butt! My Sunday School class is actually having a 6 hour simalcast seminar at one of our members' house (instead of the church) so I can lie down and still be involved! It is sometimes embarrassing, but I'm getting over it slowly. It's been good for them for me to be honest with them so they can better understand my condition and help me. I'm thinking of a way to get some kind of lawn chair I can lie down on into the church so I can start going again!

I am reading an amazing book right now called "Polishing God's Mouments" by Jim Andrews. It's about his daughter and son-in-law who have chronic fatigue syndrome and the daughter has multiple chemical sensitivities. The daughter can't leave her house and can only have limited interaction with her husband (even her family can't visit) because chemical scents they carry on their body. She can't read books and they can't have any furniture in their house but a bed! She can only be up for a few minutes at a time due to the horrible fatigue and has extreme pain as well. I have never heard of anything like this and it is sooo convicting for me to hear of someone's struggles who are MUCH greater than my own. It is obviously a Christian book, but one I have found great encouragement in.

I take Ativan 0.5 mg before I go out somewhere usually. It doesn't take my pain away, but makes it more tolerable. Maybe there is something else you could take when you could take PRN for occasions such as this.

[Faith]

Another thought. Do you wear your Dansko shoes when you go out? I know they aren't always the cutest (although they have some really cute ones out for fall). But they allow me to stand significantly longer than normal shoes. I still can only stand about 1 hour tops and probably less if it is in one position (I have to walk around/move around some). Just wanted to throw that out there!

[carolynm]

Thank you ladies, you all have become my closest friends in so many ways:)

You put into words my same thoughts and feelings (especially about the new appliances, I had that one last night--a friend is having a kitchen renovation---SO WHAT???)...

much much love to you all

I'm in a hangover from the valium I took last night ( I overdid the dose, I was desperate for relief and sleep), so I have lined up babysitters for the day . I just have to get through one more hour by myself w'the kids, and i"m a wreck right now.

cari

[carolynm]

Faith,
It's interesting that you said that because I have 2 pairs of Danskos but I did want to wear some cute wedges last night. anyway, my PT this morning suggested tennis shoes (ick) or Danskos, that they would be more cushy and help the lower back and pelvis not to be shifted forward.

cm

[calluna]

You need some Fitflops!

[carolynm]

OMG they are sooo cute! I'll peruse the site and see what fits in with my "wardrobe":)