As I look back at photos of nights out over the last few years, of which there are few, I can see in my eyes how I was feeling.  I can see the preparation to get there.  I can see the pay off.  Most people looking at the photos won’t see what I see, they will see a girl laughing with her friends, dressed up, hair done, smile on.

Don’t get me wrong I have a great time, the time spent out on a night out with good friends is precious, I treasure the memories that we make together.

For most people the preparation for a night out consists of, shopping for an outfit, shower, hair, make up, nails.  Job done.  This is a little insight into my world and my last night out, chronic illness style…Thirty eight days before my night out.

My husband had a little prang in our car, he’s fine, but our car needs repairing.  We are very fortunate that he always has another car at hand somewhere and he brings home a Fiesta for me to drive while he’s fixing the family car. This is where all the problems begin.  To most people a different car would pose no major problems, to me the new driving position caused an impingement of my hip.

So over the next month I’m back and forth to Stanmore Orthopaedic Hospital for physiotherapy (in attempt to strengthen my knee to avoid surgery) but instead having manipulated traction on my hip just to be able to walk.  Now I’m quite used to pain but at points this is beginning to take my breath away.

Two weeks to go.

Just the touch of a friend on my arm chatting outside school sees me fighting back the tears, the pain in my hip is intense.

But back to the night out, it’s black tie, an event we have been going to for a number of years and we have got to know the hosts.  They are good people, the event is born out of growing up with a younger brother with special needs, of a desire to give back, with all proceeds at donated to a different children’s charity each year.

Black tie is good for me, I can wear a long dress and hide my feet, the shoes I’ve been wearing for over 10 years because they are now the only ones that I can walk in that aren’t boots, the ones that were never intended to be worn to a black tie event.  So floor length suits me.  I have particularly nice dresses to detract from what is going on down at my feet.  I’ve worn all my gowns to this event so I have to buy a new one, that in itself is no big deal in this age of Internet shopping but being short means that dress would inevitably need alterations.  However I manage to team all of the alterations with a dressmaker whose house is on route to to the hospital for physiotherapy, two fittings, done.

One week before the day.

I am dreading it, my one night out a year and I can’t really walk without excruciating pain in my hip and now my knee is playing up too, a knock on effect from the weeks of walking funny.  My husband is applying manual traction to me at least 3 times a day in an attempt to make things bearable.  I can only manage to drive very short journeys now, too and from school.  My husband is actually driving me to Physio and hospital appointments because I can’t physically do it.  For anyone that knows my husband he rarely leaves work unless it’s an emergency, an annual holiday or a very important clinic appointment for our children.

At this point I am considering presenting at A&E to be admitted and be placed on traction, it might just help tip the balance back in my favour but kids, work, school I don’t know if we could do it at the moment?  If I can get there and just sit?

Three days to go.

I must try on my dress with the shoes (I forgot them at the fitting) just in case! Although I have already resided myself to the fact I will go barefoot if needs be, it’s comfier than most shoes anyway.

I can’t get the dress on, the pain is so intense in my hip I can’t lift my left leg off of the floor, I collapse in a heap on the bedroom floor and sob.  Why am I even trying?

The next day I book a hair appointment for Saturday, in an attempt to be proactive.

Over the next couple of days, with lots of traction and dosed up to the eyeballs on pain meds the pain eases off a touch.  I drink lots and lots of water, and have salt shots daily to keep my body in balance.

Saturday arrives and I can walk okay-ish!!!  We leave for the hotel early so I could rest in the afternoon. I am relieved.  After inviting 8 of our closest friends to share the evening with us it wouldn’t look very good if I cried off.  Hair suitably coiffed, make up applied, ball gown on and I’m laid on the floor of the hotel room while my husband applies traction just a few more times trying hard not to mess up my hair.

We have a great night, laughing with friends in sometimes the best medicine you can have.  I try to dance! not only was my hip killing me my right knee was subluxating just walking and their was a high chance of a dislocation on the dance floor which wouldn’t have been pretty.  I long to have a good old boogie but I have learnt to compromise.  So I sit, chat and laugh, have a good drink and keep the pain relief topped up, we retire at about 2am.

This is the funny bit, that’s what people see, it’s what I want them to see if I’m honest, smiling and laughing with my friends.  Having a good time.

Then the pay off begins.  I know that it will, I’m prepared.  Alcohol doesn’t agree with my body.  Two full hours of sleep and then I spend the rest of the night awake.  I can feel my heart beating in my chest and my throat and as my autonomic system becomes more unbalanced.  It upsets my blood pressure, temperature control and bowel and causes reactive hypoglycemia.  I get goose bump whenever I stand, my BP drops, I’m shaky.  I spend most of the night between staring at the ceiling and the toilet.  My pain flares, partly due to overdoing it and partly due to poor sleep but thankfully only for a couple of days.

It’s late December before the autonomic side of things calm down again, but I’m more or less my ‘normal’ for Christmas.

It’s May now, my hip pain is still a work in progress.  So if you are my friend and we go out in the evenings, don’t underestimate the effort that goes into it.  I think I try extra hard to have a good time when I’m out, I probably over indulge a little too much in an effort to have a really good night, not wanting to waste these opportunities.  I’m not ready to sit at home all the time, it’s good to let your hair down and be normal, it’s good for the soul.  It may take a bit more planning than most people but I think that it’s worth it.   After family, laughter and friendship are definitely my best therapies.

2 Comments

    • Yes! Dysautonomia is the hardest thing to try to explain to someone and the hardest part to deal with in many way due to the fact that you have very little control over the symptoms. If I have a dislocation I can apply ice, take pain relief, strap the joint and rest – I know it will improve. But if my autonomic symptoms are going mad… breathlessness, palpitations, brain fog, dizziness then no amount of salt and water can balance those things out (not for a period of time anyway!)

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