It’s difficult to explain

[Papapickle]

It’s difficult to explain to people.

After all this is an invisible illness to most people pretty much all of the time. Unless you live with me day in day out you wouldn’t necessarily know my limits as I have become a master at hiding it.

Currently on holiday, walked far to far as was with people I couldn’t let down and who are also disabled in their own right although very differently.

I had to buy a pair of crutches just to continue the journey (which turned out to be fruitless) and now left in agony.

Does anyone else have similar experiences of this?

Thanks for reading.

C

[Lovingdragonflies]

Just had this discussion with my husband yesterday. We’ve been married almost 27 years. He has seen me really struggle through most anything. There’s something about a disease that hits from every angle isn’t there. Not just ours? When you can’t remember how to send a text, or be trusted to make a meal, your body being is so much agony, or just being lonely. Or just not being the happy go lucky person you used to be. You find that you are actually taking on the same traits as that guy solo climbing El Capitan. Whether it be mental illness, chronic illness or a smattering of a bunch of things...it’s not a job (yes job) for sissies. My husband honestly told me there is no way he could possibly comprehend what I go through. He’s right. It’s hard to climb into someone else’s skin and truly understand what we deal with. Thanks for sharing!

[Blearyeyed]

I wrote a couple of replies at the beginning of the Summer for dealing with hot weather and holiday situations, if you want to look at them.

I understand the wish not to let people down, and the temptation to push yourself on holiday so you don't spoil others enjoyment.

In your case , I bet you fell into the 'invisible illness' trap because you were with others with disabilities , feeling others would wonder why you were complaining , you couldn't be as bad as them.

What most people forget is just because you cannot see the pain in our joints and symptoms roaring through our systems doesn't mean they are any less debilitating than other disabilities , and often don't have the equipment or medication available to make it better.

I had given one tip about travelling. Get rest before and after travel.

Only ever do as much as you can , just be honest to friends and family that you want everyone to have a great holiday, you don't want anyone to give up doing activities they want to do , but so that you all have fun occasionally you won't join in on something , you may just relax with a book while they are up to something and you hope they enjoy it.

Have a chair with you for the beach , have a water spritz bottle to help relief your eyes if they itch or cool your feet and skin.

Keep a jumper and socks for that unexpected change in temperature that might bring on raynards response.

Always have a bottle of mineral water to keep hydrated and swill your mouth with after eating or drinking during the day to help prevent an ulcer .

Eat light, small meals and stick to stuff you know your body can tolerate.

Keep a little pack of essential meds, steroid cream , antihistamine in your bag all the time.

Take plenty of breaks on sightseeing or shopping trips, if others don't want to or need to that's fine, happily send them on their way for half an hour while you sit at a nice cafe and enjoy the view.

Most importantly, be honest with your nearest and dearest, tell them you love holidays with them but you can't do as much as you did and hope they can understand that you will need a little help.

That includes you giving up doing all the packing, unpacking and preparation ( day bags, picnics , beach stuff etc) day to day. One of them needs to do that for you and be willing to carry stuff for you so that you have enough energy to do the good stuff with them.

It is your holiday as well , holidays will always be taxing but are manageable if we get a balance of rest to activity.

And make sure you give yourself a few good days rest after the holiday.

In the meantime , you are suffering, give yourself at least a day to do nothing , it isn't a waste it will give you the ability to take part in the rest of your holiday.

And if you can get hold of some Epsom salts ( and you are ok with them) Get a good warm bath , rotate your joints gently while in the water , then have your usual pain medication and try and have a good night's sleep.

[Papapickle in reply to Blearyeyed]

Amazing Blearyeyed.

Thank you for taking the time to reply with such encouraging words.

Greatly appreciated.

Hope you are well.

Take care.

C

[Expectthebest]

I am sorry you are in great discomfort. We need to know our limits. Especially traveling. Getting solid sleep and being mindful of what you are able to do is crucial. I know you don't want this disease to run your life but the added stress is not worth what you are enduring now. Your close friends & family will understand. Make a list of things you are able to do and share with them. They will make concessions if they truly care about you. Their time will come. Eventually we all get something. And then it will be your turn to support them. Be well my friend.