Same race : different pace My holiday

[wheezyof]

As it was :-

Invite to stay with sister. Is it during school holiday (I worked in a school) ? Yes.

Get on line - cheapest ticket - okay if I change trains 3/4 times I save enough for a meal or two out for both of us - book tickets.

Day before journey - collect tickets - throw clothes and toiletries into case.

Day of journey - tow case to bus stop - catch bus - get off near train station - nip up steps into station - on train - chuck other passenger out of my reserved seat.

Do all the changes - get to destination station - met by sister- great to see her.

After dumping luggage at her house and freshening up - out for a walk.

As it is :-

Invitation from sister. Is it when I'm free of appointments; lung function test, x-ray, CT scan, dexa scan, consultant, respiratory nurse... Yes.

Get on line - easiest journey - no too many changes - yes that has one change - £40 quid extra though- book tickets.

Send husband to collect tickets. Book Passenger assist. (Lovely people)

10 days before journey - check medication is enough to last until at least a week after I'm home - order if needed

Each day do a bit towards journey including :-

Make up travel pack of meds - enough tablets in dose boxes for whole of stay plus two days in case of delay. All 3 inhalers, rescue medication including antibiotics and betnovate cream in case skin breaks out.

Make sure I have document wallet with copy of lung function test and letter saying what lung diseases I have (My local A&E can't access my notes so I'm not risking the need to explain it all to other doctors)

Husband helps to gather clothes I want, no, NEED to pack. All weathers must be considered.

He launders, irons.

We pack.

In my hand luggage I have tablets for the day, drink, antibacterial hand gel, baby wipes, tissues, a nappy sack for used tissues and my ventolin inhaler.

Day before journey a taxi is ordered.

Day of the journey - before leaving house I wipe cold and flu stop round nose and upper lip.

Taxi takes me to station door -puts case on my granny walker - as I enter station passenger assist take over.

I'm helped all the way.

I arrive at my destination - met by sister - great to see her.

At her house she takes my luggage to the bedroom. I'm near to collapse. We have a quiet evening. Most of the next day I just rest.

Without all the help I could not do the journey.

I bet this sounds familiar to you all.

However, at least I can still visit my sister so I'm happy!

[Hidden]

It doesn't sound familiar to me! Will you introduce me to your sister? 😀

[wheezyof in reply to Hidden]

Okay Don. If you can get to Bridlington I'll introduce you xx

[Damon1864 Volunteer]

I have to go through the same routine when I go to see my friend, but like you say at least we can still do it. Passenger assist is a great help.

😊 Bernadette xx

[Hidden]

Gawd I'm puffed out and worn out just reading all that.

Gone are the days of just taking a toothbrush and overnight change of clothing.

Its the chemist shop that is the biggest problem.

I don't travel away very often but to make things simpler for myself I take a copy of repeat prescription document which lists all meds and doses. In addition I have a business size card with all health conditions on one side and all ICE contacts on the other side.

(ICE = in case of emergency contacts) that would include next of kin, doctor name and telephone, hospital name and number.

Keep the above in your purse or bag.

[wheezyof in reply to Hidden]

Hi Bkin,

Yes I take repeat prescription list too. ICE numbers are in my phone. Maybe I will add them to document wallet too. xx

[sassy59]

Great you got to spend time with your sister even though it wore me out just reading your post.

Take care xxxxx😘

[skischool]

Easy peasey. Wot no oxygen?,you travel light my friend but in a very amusing and descriptive sort of way.enjoyed that comparison with before and now.

Ski's and Scruff's, travellers on the internet.x

[wheezyof in reply to skischool]

I'm lucky because, although I have bi lateral bronchiectasis in lower lobes, and bronchiolitis obliterans extensively in both lungs, the middle bit of upper lobes in both lungs works well so my oxygen level's not too bad. FEV1 is 30'2% so not very severe. xx

[skischool in reply to wheezyof]

So you are one of Katinka's Zebra's.i should have Known,intrepid but fragile,hope you enjoyed that break with your sister and dear hubby is resting on his well earned laurels. xx

[wheezyof in reply to skischool]

Hubby will rest a bit then get on with jobs that are difficult when I'm home. Anything that disturbs a lot of dust or creates fumes.

I'm lucky to have such a great husband.

[Spacecat1 in reply to wheezyof]

It is good to have a great husband. Gave iWork to take care of me. I didn't feel he needed to but he insisted. Does everything for me. Cooking cleaning. Helping me to my clothes and coat. He's been fantastic. So I do appreciate what he does for me even when I'm having a moan about things. Love him to bits. And he's put u with me for 35years.

[Caspiana in reply to wheezyof]

Hi Skis and Wheezof. I'm sorry to butt in but did you say your FEV1 is at 30%? If so then you are in the severe range. Just curious as I am at 35% and in need of a transplant. Sorry to be intrusive. xx

[wheezyof in reply to Caspiana]

Hi,

Not intrusive at all, it's not a private message so just join in.

Yes FEV 30.2%. So severe but not very severe. However that's not the whole picture is it? My gas transfer is quite good.

If you are ready for a transplant, I hope it happens soon for you.

I think I'm too old for a transplant if it ever became necessary.

Keep as well as you can xx

[hypercat54]

Oh dear sounds like quite a palarva. I am the opposite as I can physically do the journey reasonably ok but my depression and anxiety prevent me from travelling much. If I am with someone else who takes charge I am ok but not on my own. I have 2 very good friends who live many miles away and haven't seen them for a long time and only when they come to mine.

[wheezyof in reply to hypercat54]

Sorry you find travelling difficult. Passenger assist help with ANY needs including anxiety.

They do everything for me. Maybe yo could try them for a short journey? xx

[hypercat54 in reply to wheezyof]

Oh I didn't know that. My anxiety kicks in though the moment I think I want to go away. I only got to London last time coz my friend booked the hotel and the coach. I get very stressed by it all so usually get no further than the trying part. x

[HungryHufflepuff in reply to wheezyof]

How do you arrange passenger assist? Does it have to be booked when you book your travel. Also how do you let them know what you need assistance with? I suffer with terrible anxiety when travelling. When I’m with someone it’s not so bad but by myself is almost unbearable and most often I just don’t go because I can’t cope with it. I’ve been thinking about passenger assist since I first read your post and would be really grateful if you could tell me a bit more about it.

[wheezyof in reply to HungryHufflepuff]

When you have booked your journey telephone [phone]. They will ask you about your journey and your needs. Don't be put off by the first person to answer the phone - they just need to know you are ringing to book assistance and have to make sure you are ringing for help in time.

You need to book the help at least 24 hours in advance.

If you book your tickets online some train lines offer the chance to book assistance at the same time (Cross country do this).

If you are nervous of booking this yourself ask a friend to book it for you.

Good luck xxx

[HungryHufflepuff in reply to wheezyof]

Thanks for the reply and info, that’s really helpful and much appreciated 👍

[Katinka46]

Well done. I had nightmare journeys to and from London for appointments at RBH. Does travel assist get you to the taxi ranks?

Kate xxx

P.S. aren’t sisters wonderful?

Mine is coming here next week.

[wheezyof in reply to Katinka46]

Hello fellow Zebra,

Yes the passenger assist people walk me, slowly, to the cab office next to the station. I used get walked to the taxi rank but an assistance worker showed me the cab office, same distance as taxi rank but an indoor waiting room and a£1, cheaper fare!!!

As for sisters, yes mine is fantastic.

[Carnival567]

I haven’t had to resort to trains as my husband still drives, but everything else chimes. Inhalers, medicines, prescriptions, arrrange oxygen, take copies of medical reports in case I end in A&E, all the other things fade into second place, like clothes etc. Mustn’t forget spare glasses. Is it worth it. Emphatically, yes! We had a lovely holiday in Dorset, no trips to hospitals, running out of medicines so fine. All this complicated for my husband too, who has to take his medicines, prescription and enough stoma equipment for the length of stay, so he has a boxful too! Only the dog has it easy, as he leaps into his travelling cage, curls up under his cushion and goes to sleep!

[Kristicats]

Well done and well worth all the planning and effort Cx

[Corin1950]

I'm so impressed with your planning and energy in organising your visit. Glad you enjoyed it. My husband and I used to travel a lot but now our only trips together are to the hospital with a call in at the supermarket as we pass by on out way back.

Best wishes to you

Corin