I’ve got GCA , PmR and LVV.
mum down to one and a half pred .
Just wondering if it’s too risky to go to Scilly as they only have a tiny hospital?
Husband’s business is going into liquidation and I thought it would be good to “ get away from it all” with our dog for a week.
oh I’m on Tocz too.
sorry not mum but im
If you are down that low, I doubt you’ll have any problems [but I get your drift ] -but do you have enough Pred to take extra for a few days just in case you flare?
Make sure travel insurance are aware - and are you flying or ferrying across? No taper whilst you’re away.. and enjoy/
By the way you can edit post easily enough - just select ‘More V’ under post, Select Edit, make necessary changes and just post again…
Thank you for your reply DL.
Hoping to use the helicopter because it is quicker and would give us more time to drive to Penzance …we live in Southampton.
Yours and Snazzy’s replies are the reassurance I needed,I think.
Thank you both
You're welcome, and enjoy...
Emergencies are dealt with using the Cornwall Air Ambulance if the hospital can’t help. Are there any particular issues you are concerned about? Sounds like it could be lovely, as long as you plan the journey to be as little stress as possible. I gather the ferry can be ‘exciting’.
Thank you for your quick reply- I’m feeling really well but just concerned in case I had an adrenal crisis .
They use helicopters to transfer to the mainland if anything were to crop up that required ICU and they will have the necessary medication on the island for an adrenal crisis provided it is recognised.
Hi, I live close to that part of the world. I’m sure you would have a lovely time. I would check out the weather forecast as the helicopter can be fog bound or not fly in strong winds. The Scillonian I think does not start again until March so depends when you have in mind. Dog heaven, wonderful beaches …but beware…the sea looks so inviting but it’s freezing !!!😊 I hope you all have a wonderful time.
Thank you August 7
Since I was diagnosed with PMR, I'm very much of the mind set that you should do whatever makes you happy. These autoimmune illnesses are really shitty, but life is short and we don't get any younger, so you have to make the best of it, within your capabilities. I can understand being a little cautious about being unwell and away from home, I have been the same when travelling, but I got there and I got back again safely, and I am a changed person when I get back for quite some time after. The benefits that I get from a trip away, even a short one, make the anxieties beforehand worth while. As has been pointed out already, the islands are set up for emergencies. People live there and are susceptible to all the other hazards of modern life that are also on the mainland and life goes on. Just make sure that you have adequate travel insurance and don't leave your meds at home and then Go for It! I expect that it will do you the power of good. Have a fabulous time!
P.S. The above was written by someone who has a 300 mile drive up to Northumberland next week, just as the Beast from the East seems to be threatening to make a reappearance. I'll be fine when I get up there as I will be near the coast, but I am quietly bricking it about the drive up there, in case we get snow next weekend! I don't fancy being stuck on the A1.
Better the A1 than the M1 ... Which bit of the A1??
Not expected until the 17th ...
I usually use the M1 to Leeds and then carry on up to Beadnell, just beyond Alnwick. I'll be leaving pretty early as I like to get past Newcastle before lunch time on a Saturday, if possible. It's the high ground around Morpeth that bothers me if there is snow and actually those hills either side of the Tyne crossing are not so bright. I'll keep an eye on the weather before I go and adapt the journey, as appropriate. I'm sure it will turn out fine, just me fretting, as I like to do.
I agree, the M1 has become a dreadful road, almost as bad as the M6. Though the roadworks down this end seem to be finished for now, but not sure for how long.
The M1 would mean more time on the M25 - the Dartmouth crossing is bad enough!
From Darlington-ish I sometimes go up the A68 to Scotland but would think twice (at least) if snow was possible! But I've never had much of a problem on the A1M and north - I lived in Durham for about 10 years and while Consett and all round there could have a few inches, Newcastle rarely did.
We do the 300 mile drive to Northumberland regularly as my husband is from the north east and his family live there. We used to do it in one hit, 5-6 hours, but since my PMR arrived we split the journey and stop overnight at a Travelodge near Grantham (which is about half way). They are a bit basic but fine for overnight, find this less tiring as always new roadworks on the A1 to delay the journey. Have a wonderful time on the beautiful coast.
Thank you, looking forward to a spot of winter bird watching by the coast. I do the same, get on the motorway and blast all the way up there. I try to leave around 5.00 am to miss most of the Saturday traffic. Unfortunately, when I will visit in June, the cottage I booked has a Friday changeover, which is a horrible day to be driving. I'll probably drive up overnight then and have a kip in the car whilst I am waiting to get into the property.
I have the perfect answer - a VW campervan!! Freshly made tea, my own bed anywhere!
Last summer I underestimated how far I could drive when heading back to the UK and went to a campsite about a third of the way to Calais and intended to go to a second but it was full so I kept driving - now I know I can make Dunkirk easily with a single stop and will probably use the van on a parking area. The Dunkirk ferry terminal is open all night with toilets and snack machine and a quiet carpark. It was what I hoped would work when I bought the van! I crossed in the morning, left Dover about lunchtime and drove to Whitby in one go with just a stop for some tea - I usually make a flask before leaving.
The thought of a camper van has crossed my mind a number of times. Nowhere to park it here, unfortunately, so I would need to find some storage locally. Anyway, it would get nicked here, if not on a secure site. The joys of living in the degenerate south east!
Enjoy, we always avoid driving up on Fridays or Saturdays. Much easier drive these days. My husband has been doing that drive for about 50 years, so much quicker now. We stay with family so don’t have to worry about changeover days.
Yes, the difference in the drive from Dundee down south is unbelievable in the last 50+ years!
We used to use the M1 which meant a drive across London which added about an hour to the journey, and was not enjoyable. Luckily we now live near the M11 so use that and then pick up the A1. Journey used to sometimes take 7/8 hours via M1 now down to 5/6 hours. Once or twice we have got train to Newcastle and then picked up a hire car, but price of train tickets is hair-raising. Public transport is not so good in the north so need a car when we get there. Love your idea of camper van, will put that to my husband.
I usually use the M11 as well. I flew back a year last November for a graduation - Manchester to Sheffield by train was bearable but cost a fortune with not having been able to book in advance. The rest of the tour (Sheffield/Whitby/Rosyth/Whitby/Manchester) was by car - was going to do York to Manchester by train but we woke to snow and 3 out of 4 roads ut of Whitby closed!! Then the plane was delayed, missed the connection at Frankfurt - not a good place to have to spend 5 or 6 hours!! Never again ...
not sure if this helps…a friend& her husband went to theScillies. Her husband went swimming, he’s an ex Royal Marine & very fit. He came out,sat on the beach & couldn’t speak or function, she thought he’d had a stroke. Ambulance arrived, very fast (no traffic delays & few call-outs) & they helicoptered him back to Cornwall immediately, & he was treated faster than if he’d been at home in Cornwall! All you need, for peace of mind,nis travel insurance. But, compared to becoming ill in England, where ambulances can take two hours to get to you, becoming ill there gets quick attention!
Thank you so much for all your encouragement!
How low should I go?
How high should I go?
Should I go on holiday?
Should I go back up to 10mg preds from 9?
By how much should I taper?
