Lupus and Sjorgrens

[lis]

Hello,

I've just been diagnosed with lupus and sjorgrens and worrying how it will effect my holiday. Is there anyone who have these conditions and managed a Florida holiday? It's an effort to walk up the stairs at the moment, so I have no idea how I'm going to manage around the parks and queuing for long times. Any tips will be greatly appreciated 😊

Thanks

[paw]

My DD best friend was diagnosed at 15 after several years of tests - the diagnosis was the last thing AlderHey expected. She was very severe and given a life expectancy of two years. From the age of 11 to 21 she came to Florida with us every year, her parents paid the insurance, and the only problems she had when there was with her getting overtired (refused a wheel chair) and balance / judging distances, often resulting in cuts which used to bleed a lot. In the end we had to ban her from the tacky shops on the 192 (her favourite shops) as she could destroy a display in seconds.

We took things slowly anyway but she would sit on the floor in queues- no fast passes then, and have lots of breaks. Often we would go early and return to the villa for lunch and time around the pool. We would claim a place early for parades and fireworks and just sit in the floor and wait. She went on every ride and would sleep through the shows.

She has had lots of problems over the years including heart surgery as a result of the Lupus and spent a lot of time in hospital due to infections. She went to university and qualified as a nurse, although she isn’t fit enough now and works part time as an auxiliary; married; divorced but happy. She is now 38 and lives in a shared house, still enjoying life.

[Wobbles]

I have SLE and was diagnosed at 14 (now in late 40s), we go most years. Things I have problems with in Florida:

(1) The heat, especially where my skin has the rosacea like reddening is very sensitive. I am prone to heat rash and have to be careful what I put on my skin. Having tried, what feels like 100s of sun cream, I find ultrasun works best and I treat the rash with prescribed steroid cream. Currently treating a flare up which covers most of my leg and both my feet. Not sure how old you are but Lupus and Hot Flushes is a nightmare.

I get "Hangry" if I don't get enough to drink so we are never far from iced water and carry bottles around, it can also effect my blood sugar levels if I don't get enough to drink which in turn effects my energy levels

(1a) Also invest in a lot of good quality sunglasses and hats - intolerance to light can be a very quick short cut to a flare up

(2) Energy levels - I have problems and do resort to a wheelchair at times, But we do little and often at the parks, often not getting there until 4pm in the evening as it is cooler and we like the Halloween stuff at nights. I have a strict physio programme which is so much easier in pools and we always make sure I have noodles to be able to exercise. Tip - Child Swap areas are a great option for 5 minutes sleep in the cool. Keep a neck pillow to hand for that

In the mornings I will do a physio session in the pool, we go out for lunch and then I sleep before we hit the parks or evening activities. When we go to water parks (which we love as it's cool in the water), either aquatica or DC, we will go for the whole day and get a cabana. That way Mr W can get his kicks and I can sleep in peace in the cool and under the shade.

Don't be afraid to use a wheelchair, I always decorate mine in a theme with battery fairy lights to make it more holiday-ish and festive. Renting chairs is quite cheap if you haven't your own and ideal for longer park days. Take a bag of cable ties (cheap from Amazon) with you if you are renting a chair occasionally so you can attach an umbrella and a small battery run fan to your chair for shade, a retractable brolly works just well and doesn't add bulk to the chairs. Electric ones are great if you have small children as they can double up

(3) Bruising - One of the reasons I take a wheelchair is so I am not banged in airports or at the parks as I bruise very easily and even the smallest bump can damage a wide area of capillaries and mean I am covered. Get your specialist or GP to check on your platelet and red blood cells levels regularly as that will be a good indication to bruising and energy levels (and sometimes you need to ask for checks). Bad bruising also zaps energy levels a theme here I see!)

(4) Know your Air Con - we love that "Ahh Moment" when you hit the cold air but if I am in the middle of flare up, a drastic change in temp can have a negative effect and cause a shock like response (palpitations fast breathing, fainting - not good if you have low red blood cells for getting oxygen to the brain) - so make sure you have a cardigan or light top when you move indoors, the worst spot for me is Men in Black in Universal and I know that I need time to adjust.

(5) Bring a couple of tubes of Bon Jela with you (I always keep one on me) as if you get the mouth ulcers, the high sugar, high acid and high salt in US food can set them off.

Biggest tip I can give you - is we all react to Lupus differently. I can be in pain for days with a bleeding scalp and I only know one other sufferer who has that symptom. Some like energy is common to most of us. I hate that I am glow in the dark red and very overweight due to my meds but I love being able to nap at any time. I hold down a high level Senior Civil Service post and I can work around my flare ups. Married and owned by a pair of crazy cats

Relax, take it easy and enjoy. Take advantage of passes and take every day as it comes. Can't wait to hear how you get on

[Wobbles]

Oh wow - that was more of an essay than I planned it to be

[YorkshireT]

Originally Posted by Wobbles

Oh wow - that was more of an essay than I planned it to be

See more...

But a great story to hear! Despite an autoimmune condition you get on with living. Best of luck OP.

[KRBarnard]

I have Lupus, Sjogren's and Fibromyalgia. I was diagnosed 11 years ago when I was 24, over a decade after being mis-diagnosed with arthritis.

I have been to Orlando 20 times and how the holiday goes, depends on how settled my Lupus is. I would never go during a flare up.

The disability assistance programmes in the parks are really helpful. If you explain that you struggle with joint pain and can't manage stairs and any other problems, they will be able to explain the best way to make your way around the parks. Take things steady with plenty of drinks breaks, and don't push yourself too hard one day, because you'll suffer for the next 3.

There are plenty of benches to sit down and a fair amount of them are in the shade. It's very important to not stay in the sun for more than a few minutes if you can help it. I suffer from Solar Urticaria as part of my Lupus, but pretty much all Lupie's are set off by sunlight. Cover up with light clothes and a cute hat, and stay in the shade as much as you can.

Wheelchairs and ECV's are available to hire, either from the parks on a day by day basis, or local companies for your whole trip. I religiously have weekly physio/hydrotherapy and do twice daily movement exercises to keep me out of a wheelchair and have been stubborn enough not to do this so far, and just about get around with my two walking sticks (decorated with fairy lights of course).

One big thing I notice which gets worse every time I go, is the recovery from the flight. I don't know if it's the cabin pressure or trying to sit for such a long time, but my joints, in particular my hips, really hurt afterwards. I do book the wheelchair now to get me to the car hire area as twice I've not made it before legs have given out. The airline you book with would be able to do that for you.

If you want to talk about your diagnosis any more, or have any specific questions, just drop me a message

[lis]

Thank you so much for the replies. I'm hoping that I can get the lupus under control by the time we go in Feb. I've sorted assistance for the flight and they have given me the bulkhead seats with extra room. Hopefully I can get a disability pass as well from guest services. Sunlight has been a massive issue for me for the last 10 years, even though I've only just had a diagnosis. I suppose it's all a learning curve at the moment.