Off on holiday and very anxious!

[Tryfan]

We have planned a long summer holiday this year as Grandma is 80 and a lot of family are getting together.  Trouble is, since we booked (a long time ago), I have had all these dramas with my health and now, with a diagnosis (Connective Tissue Disease with Sjogrens, APS and possible Lupus), I feel like this holiday is time away from the safety of my home rather than a proper holiday.

I have been prescribed Plaquenil and 150 mg aspirin for APS but I've only started taking both recently.  I won't have access to a computer so I won't have you lot to support me either!  My symptoms are still there and old ones have appeared again (costochondritis pain in sternum and ribs, few heart pains but ECG and chest x-rays clear, tingling, numbness, etc..).

Are there any tips for getting my head in a better frame of mind?  Any advice for a long car journey (besides stopping often, of course)?

I am seeing the GP tomorrow morning and have a list for him but he hasn't even seen the letter from the Rheumatologist yet (giving it by hand) so the appointment will probably be taken up with digesting that!  I feel I need to ask for painkillers just in case.  Any ideas?  Does anyone know if you can take aspirin and ibuprofen at the same time?  Sorry, lots of questions....thanks for reading, mx

[lynnmarie219]

I don't think that taking aspirin and ibuprofen together is recommended, and I would definitely discuss the trip with your doctor and see what he/she has to say about pain medication or others meds that you currently are taking as far as mixing them together. That's always your best bet!


I wish you a good trip.....its possible to still go on vacation and enjoy yourself even with all of these new diagnoses that you have gathered. I understand though what you mean about leaving the comfort of your home where you have everything set up around the house as you need it. Just pack all of your necessities, make sure that you rest as often as you need to and yes take breaks from driving to stretch and walk around a little bit. If you drink as much as I do in the car....you will have to stop often to take bathroom breaks depending on how long the ride is! 

Have lots of fun with the family and with grandma....and let us know how it goes when you get back...we will be here! 

[ruby52]

I think your mind set is really going to make or break your trip.I don't know if your driving or flying but I've done both,prefer driving.I still find I love to travel thank goodness.All my family is aware of my limitations and even though they tease me about suddenly announcing I'm heading off to bed at 7 they understand I've reached my limit.I even have fun and enjoy myself but it's written all over my face when I have had enough and all my family members have been supportive .But you know I really can't worry about that I have to take care of me.Flying is stressful for me so I talked to the Dr. and I carry a xanax with me and just having the backup comforts me and gets me to my destination.I hope you can come up with a plan that will allow you to have a great time.
                                     Ruby

[harrigan]

I take co-codamol (presecription strength) as well as amitryptaline (50mg) at night to manage the pain.  You really do need to know that you can deal with the discomfort of a long journey and not having your own bed to retire to.  Explain your worries and if necessary, lay it on with a trowel to the GP about the night pain. 

I feel I can cope with the day if I know I can get to sleep at night for several hours, even if it is a kind of 'artificial' sleep.

Hope you can enjoy your trip and feel the benfit of being away.  If you have no email, would you want my mobile number so you could at least text if you are worried?  Not saying I will have the answers but I could at least pass on your concerns and get back to you.  Maybe it would help you feel less isolated - just a thought XX Ailsa

[Chickpea]

Hi Tryfan

I've just been to Florence for a 4 day trip to celebrate my daughter's 21st birthday.  It had been planned for ages, all my children were coming including one from the USA, and I knew I absolutely had to be there.  But like you I began to dread it.  In the event it was really tough and I was absolutely shattered, ill for most of it and in bed for much of it, but happy because I was able to share the joy of the family being together.

So I'd say: Go but it won't be easy.  Is there one member of the family who can be your special support, or do you need to be that person for the others?  I'm happy for you to phone me too, as Ailsa has offered.  I could either offer support by phone or text, or look things up for you if that might help.  PM me and I'll send you contact details if this might be a help. 

The Plaquenil won't do a lot for pain relief mainly because it needs time to kick in.  Because of the aspirin you should avoid too many anti-inflammatories such as ibruprofen, but you could take up to 8 paracetamol a day.  I think we sometimes forget how effective paracetamol is and taken every 6 hours like this it can really help.  You can get paracetamol with a bit of caffeine in too, just in case you need the extra buzz.

Survival tips:  I'd take my own pillows for the car and the hotel; lots of fresh fruit and juices; and refreshing wipes or facial sprays, something lovely like lemon or rose water.

Hope you manage to go and have a good time.

Take care - Chickpea

[eyeamdry]

Enjoy yourself!  Traveling, the new sights etc does help take your mind off yourself and your pain.  You said "stopping frequently" and I thought you said "shopping frequently.  Combine those two and you're off to a good start.  Even if it's window shopping.  Report back here about your trip.  Lucy

[Bucky]

Tryfan,

I don't have any advice that hasn't already been given, but just wanted to wish you a safe trip and a memorable time with Grandma.   

I like the advice of Lucy . . . stopping and shopping  . . . a perfect combination!!   

Just pace yourself and rest when you need too.  Have fun!!

Bucky

[Tryfan]

Aren't you all great!  Thank you so much.

I'll go armed with aspirin, Co-comadol, Glandosane, Hypromellose drops, Plaquenil (although I know I can expect nothing from that early days), cushions, sun hats, cream, beach tents, tiger balm....kitchen sink!

I'm going to be really brave and trust that if I need medical advice, there'll be some somewhere, that I'll be with lots of family who will help me I'm sure (even if it is the in-laws!) and that there will probably be someone there with access to the internet.  It will be good to have a lot of adult company and I'm sure it will take my mind off things.....but I am having a particularly good day today...might not say this tomorrow!

Please don't be surprised if I suddenly take you up on the offer of contact, Harrigan and Chickpea (glad you went to Florence but not that you suffered).....I'm going to see how the next few days go....

Maryxx

P.S. I am going to Wales from whence I came!!!