Has anyone ever tried camping outdoor... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Has anyone ever tried camping outdoors in our lovely uk weather..I hav secondry raynaurds..

fruitpastle profile image
10 Replies

I would love to be able to take my kids camping over the holidays iv been looking at buying a tent! my boys r 8 and 10..this raynaurds thing does my head in having to run indoors to get my fingers from going black..im on diltiazem. This time last year i lost my wee mum i miss her so much.i spent all of last summer in mourning the worst yr of my life and my kids never really got anywhere.. this summer i really want to do as much as i can with them and they want to go camping, can anyone out there give me advice on how i can stay warm through the day and especially the nite in tent ,iv never been outdoors for more than 3 hrs with this condition and when i take a raynaurds attack i get into supermarket toilets and run my hands under warm water.I want to try to live my life with my kids and not let it stop me. in the evening at a campsite uv only ur tent to go and no four walls to protect u so im abit worried.has any1 ever stayed outdoors for a few days with this condition please advice ta

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Rachelh7 profile image
Rachelh7

We do lots of camping! It's a bit more complicated with raynauds, but I wouldn't let that stop me.

We have a poly cotton (rather than polyester / nylon) tent, which is much more expensive, but definitely worth it. It's big enough for all 5 of us to eat / play inside, if the air is a bit cool. We always take electrics with us, and I take an electric fan heater to warm the tent (which really works well with the polycotton). We've also just changed the tent to an inflatable one, as it was getting too difficult for me to manage the poles etc. of course, I also take hot water bottles, blankets gloves, and have even taken my electric blanket with me sometimes. A kettle for hot drinks is a must for me too. My rheumatologist lets me up the dose of my nifedipine slightly too (obviously i wouldn't take more than he recommended).

OK, so I can't quite do the 'back to basics' camping that I used to, but Im not going to let my children miss out because of my scleroderma and raynauds.

We're off to the south of France for 3 weeks in the tent in a couple of weeks time. Should be lovely and hot down there!

You can do anything if you want to. You just have to find a way to make it work.

fruitpastle profile image
fruitpastle in reply toRachelh7

Awh this has made me smile with hope..I thgt I was mad even thinking about it. I have been looking at inflatable tents like the berghaus 6 man tent as I also would find the poles difficult but inflatable one goes up in minutes. I used to love camping and really want my kids to have the experience. Can u recommend whats best for sleeping on and keeping cold ground away. I have been looking at self inflating mats and had thought of reflecting aluminum emergency blankets they just look like tin foil.. I had thought about putting it under the mat. Also I wondered about a tent loo as getting up in middle of night would be a palava! I take a raynaurds attack when i get up to use the ensuite at night and thats in a warm house..its the sudden temperature change that i struggle with too..thanks

Rachelh7 profile image
Rachelh7 in reply tofruitpastle

If it's cold, that's exactly what I do - put an emergency blanket underneath my (thick) self-inflating mat. I also put a thick fleecy blanket under my sleeping bag (or sometimes my electric blanket), and a blanket over the sleeping bag too. I always take a hot water bottle with me, just in case. Believe it or not, I often find that I get too hot in the tent! I think sometimes I'm a bit too cautious, and over-compensate!

I make my husband get up to the children in the night, but I do that at home anyway as my hands are usually quite stiff, and I get carpel tunnel syndrome at nights, so have my splints on anyway. I try not to get out of bed for the loo in the night!

Do you have a partner to help, or are your children old enough to help out? I think the only bit I'd struggle with on my own is folding the tent, as the polycotton is quite heavy. We have just bought an Outwell Harrier XL. It's definitely a 2 man job to lift! We've had a Wolf-Lake 7 for the past 8 years, but I was finding the poles too difficult, and didn't want to feel like I was useless!

Definitely give it a try! I'm stuck indoors for most of the autumn / winter / spring, so really want to make the most of getting outdoors in the summer. We camped last weekend and I'm going again this weekend too!

Life's too short to make excuses. x

fruitpastle profile image
fruitpastle in reply toRachelh7

Yeh Im going to try it my husband will maybe come on a trip but iv a camping festival coming up in 2 wks and it'l just b me an kids I think they could help with the folding of it I never thought about carrying it back to car but im sure I can get someone to help if i cant do it..the loo thing effects my bowels I don't get much warning when i'm in supermarket shopping I have to sometimes leave my trolly an get to loo asap! so I think i mite get a portable loo as this can happen in the nite!..My tent is coming on Saturday so i'm gona have a trial go in my garden..I know only too well that the summer goes by so fast..thanks for all ur tips .. u really dont know how much at ease uv made me feel, i've been walking around past few days saying to myself ...yes u can do this...and..ur not the only one ..just knowing that sum1 else with this condition is outdrs camping really helps!

All of last summer I spent in hospital caring for my wee mum It was horrendous then when she died I couldn't cope with anyone my boys school holidays flew by..this year I hear mum telling me to concentrate on them and live life..we always had a caravan and spent mths outdrs growing up and I want my boys to have those camping memories too! so fingers crossed and it'l not be as cold as I imagine!!

I will let u know how I get on..hope u have a lovely comfortable camping trip too ta x

Rachelh7 profile image
Rachelh7 in reply tofruitpastle

I hope you have a great time! I'd love to hear how you get on x

ecc1 profile image
ecc1

I go camping with my guide unit and have alway taken a second sleeping bag.

Just make sure you have a flask of hot water so you can always get a drink, hat , gloves and thick socks to sleep in And a hot water bottle.

Pick a site that has shower etc and you should be fine.

have fun and enjoy the experience!

fruitpastle profile image
fruitpastle in reply toecc1

thanks so much for ur adivce just knowing there are other people with this condition going camping makes me feel i can do it too..sites with showers yes il do that thanks..

Serendipity16 profile image
Serendipity16

Hi

I camped near seattle temperature probably about 20 deg?? I have primary Raynauds and manage it without meds as nifedipine disagreed with me. I slept in thermals, clothes a hat and reasonably thick sleeping bag on a self inflating roll mat. Layering is the only way really. When I go walking I have about 5 layers (vest top up to a down jacket) but do get warm so need to be able to take on and off. Someone recommended extremities super thicky gloves to me

sportsdirect.com/extremitie...

They are good and better than a lot of thin gloves that allow finger moving, but not completely perfect (used in winter not quite enough) should be fine for the summer. I also have the hats that come over my ears tying under my neck, and a buff e.g. gooutdoors.co.uk/north-ridg...

I also wear hiking boots with thick socks when out walking, or snow boots in the winter, not so bad in summer. For sleeping bedsocks/ thermal socks might be good, avoid tight elastic think.

For in the house I use this blanket (in brown)

tesco.com/direct/ribbed-whi...

(warmest I've had) and it may be worth taking something similar for around a sleeping bag, if you are driving and can carry it.

A mat of some kind will also protect you from the cold in the ground (a normal airbed, if you have one already may be better than an inflatable roll mat? which is better than a basic roll mat).

I don't have electricals when camping but have used a little gas stove and camping kettle for drinks and pot for cooking. Stove similar to this

thecalorgascentre.co.uk/hom...

I hope this helps a little and you have a good time :)

Brand1985 profile image
Brand1985

I've been camping and I have very severe raynaurds! I found it quite difficult to cope with sleeping on the floor and obviously my hands and feet getting really painful and swollen! Its better I think if u can go glamping ur off the ground in a warmer tent etc! Good luck and sorry to her about u losing ur mum! My mum has terminal cancer x

Ncoff profile image
Ncoff

I still go camping but get really stiff, I just layer up and have a heater in the tent, although can only do it through summer months

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