May's Topic of the Month - Going on Holiday (We want to hear your tips and experiences)

[Paul_Howard]

Our ‘Topic of the Month’ in May will be, ‘Going on Holiday’

It is getting to that time of year when the weather starts to improve and the Summer holidays are on the horizon. Therefore, we thought that this would be a good time to discuss holidays so that everybody can be prepared if they are going away and have the best time possible.

We’d really love to hear if you have any tips for going on holiday with lupus. Do you have a good technique for pacing yourself when your friends or children want to keep busy? How do you organise your medications and anything else you might need while you are away? Do you have a story to share about a particularly good (or bad) holiday experience?

We would like to hear all of your tips and experiences and we’ll compile them at the end of the month for an article. Please share in the comments section below, or email [e-mail]  

The article itself will be posted on the LUPUS UK Blog at lupusuk.org.uk/category/blog/  

All submissions will be anonymised.

[joanne27]

holidays!

For me holidays are a total nightmare to organise.I need all meds ,sleep apnea machine, incontinence wear, protective covers for beds a wheelchair and someone to push the chair.I would need to pay my fee plus that of a carer plus i get charged extra for the luggage for medical supplies- all this on disability benefit means i have had one holiday in 11 years. Also to plan ahead is so difficult as i could be really ill and unable to even sit up on the day of travel too and from the destination.I would really welcome some sort of affordable break and if i get to a pool and can swim it always helps me with joint pain and stiffness.I am interested in how others cope with travel although i am aware that my illness is quite advanced leaving me significantly disabled for most of the time.

[Paul_Howard Partner LUPUS UK in reply to joanne27]

Thank you for sharing your experiences joanne27. I'm sorry to hear that it is so difficult for you to arrange a holiday. I'm sure that there will be a number of other people on here in a similar situation. Hopefully when we publish the article later this month there will be some useful information for you.

[Boxxietrolls]

Traveling is hard. Just packing is stressful and puts my body in a panic. Generally if we travel somewhere we are driving and that's the worst because sitting for long periods of time is horrible. It's worse when I'm the one who is in the sun. I often have to have the air on full blast and my husband has to freeze.

Once we get where we are going, that's another matter. I know if it's the sun or includes lots of walking, I won't be able to wall by the end of the day. There isn't anything tou can do. If you go to the zoo, you don't want to just see half of the zoo. Who ever heard of that? So you have to push on and do whatever you have to, to finish the zoo. Even if that means a wheel chair or other means.

The big tip I have is that you need to pace yourself. If you feel that your body is starting to hurt, you should stop. I know when my body is hurting and I push it, it's ten times worse. I also know when my body hurts, I get the horrible "fog" and u just can't function properly. I currently have lost my glasses because of it.

Finally, try not to stress yourself out. I try extremely hard not to be stressed. If any of your friends or family dont understand, you can't make them. Just forgot them. If these people truly loved you, they would try to understand.

[Paul_Howard Partner LUPUS UK in reply to Boxxietrolls]

Thank you for sharing your experiences and tips Boxxietrolls. I think that your tip about pacing is very important. How do you stop yourself from overdoing it when you have other people with you wanting to keep busy?

[sarahsch]

Good topic, great timing!

I have 2 children & they like to play in the pool, so trying to workout how I can lay fully dressed by the pool without looking out of place.

[Musicteach]

I have just booked a river cruise in Calcutta, where I spent part of my childhood and trained as a classical singer. I have been homesick for India ever since I left! I have no idea how I shall fare with the humidity and sun...I am vomiting sick in the heat of an English summer! But, it is the top of my bucket list, and I shall go armed with sunscreen, a folding walking stick, sun hat and parasol and trust the Dr Theatre of excitement will see me through. I will look forward to tips from the forum, however! Any advice very gratefully received. X

[Paul_Howard Partner LUPUS UK in reply to Musicteach]

I hope that you have a fantastic trip! Be sure to let us know how you get on.

[Musicteach]

Definitely will! It isn't until early August, so lots of time to get visas, etc., sorted. Has anyone any tips on travel health insurance..cheapest and best?

[Paul_Howard Partner LUPUS UK in reply to Musicteach]

We have a list of travel insurance providers who have been recommended to us by our members on our website at lupusuk.org.uk/travel-insur...

[Musicteach]

Brilliant...thank you!

[bluebell99]

I fill a weekly pill box and take it as hand luggage if flying. I also take a couple of days spare just in case of delays. On a long haul trip away for a month I take all my medication in their original packaging in hand luggage as well. I also have a repeat prescription with the GP surgery address on it in case there are questions, particularly in the Arabic states and some Asian countries.

My bag has been always searched in my presence, contents noted against the prescription form and handed back complete. This avoids someone opening your hold baggage and removing your medication, and either not replacing it or detaining you to explain why you are carrying said drugs. This is especially important if you are prescribed opiate type medication.

Do double check you have all your medication. I forgot my prednisolone and levothyroxine and as I was away a month I had to see a local doctor and get a prescription made out. Both incurred quite a large fee, but at least I had my repeat prescription so the doctor could check my medication and dosage.

Forgetting something as simple as that with meds that must be taken daily does make you more alert so it doesn't happen again!

[Paul_Howard Partner LUPUS UK in reply to bluebell99]

Hi bluebell99 , thank you so much for sharing your tips. There is some really good advice here.