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Glad things continue to be moving in a positive way. I read about Ashton Kutcher & wondered if he has the same condition. So glad your symptoms were not that extreme!

Excited that you are going to Switzerland again! Short hikes with more time enjoying the view of those amazing mountains will be a nice change even if you can't do the longer hikes this time.

Stay well!
 
Thanks for the update Pauline. I've been thinking about you lately and was getting worried. Although your recovery is slower than you'd like, I'm glad to hear that you're moving in the right direction. Still sending positive energy your way.
 
Another update in this almost hidden thread. I have been dealing with this freakin disease for nearly 1 1/2 years now (Giant Cell Arteritis a form of Vasculitis that affects the arteries in head, neck and shoulders)! The last few months have been bad which is why I haven't been on the forums much. It is just fatigue, no pain, and side effects from the drugs I am taking.

But I feel like I am coming through this and have felt much better energy the last few weeks - good days and bad days. I can't do the walks that I used to do but we still go out walking several times a week - sometimes only a mile up and down our lane, but at least it is something. If you saw me you wouldn't think I was unwell.

I would love to have the energy to do a driving trip to Normandy in May or June, but am not sure about it. We have 5 weeks in Switzerland booked and managed that trip well last year, so I am sure we will do this one.

I've never really been sick (except for back problems my whole adult life) and I've never taken drugs like this (except for recreational ones a long, long time ago), so all this is new to me. I follow a forum in the UK just for people with GCA and it's companion disease PMR, so am well informed. I don't post, I just read. And as much as the NHS is supposed to be falling apart here in the UK, I have been very well looked after. If I need to talk to my Rheumatologist I just phone, leave a message and he calls back.

I so much miss our travel! We are both very worried about catching Covid (we've never had it) because the drugs I take have suppressed my immune system, so that limits us as much as my fatigue. I think back to the incredible travel life that we had before the pandemic and am thankful that we had all those wonderful years. The upside is that I have got a lot of house projects done! Next project, a new garden shed!
 
Thanks for the update. Getting older is challenging for sure. Even the simpleSt of injuries/ailments take twice as long to heal, and I'm never quite sure what my new normal is!

I've just started to walk after fighting a foot 'thing' for several months, and Art's back continues to degrade, so we too are grateful for all the traveling we did 'before'. For now we're trying to find gentler ways to travel, and if that means taking a small group tour, so be it - except for the concerns about Covid. Neither of us has had it either, and I'm staying vigilant, porbably forever.

I hope you're able to travel to Normandy, and later to Switzerland, and best of luck with the new garden shed! How I wish I had a garden again!
 
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Thank you for the uopdate and the positive attitude. You are so lucky to be looked after so well by the NHS. (There are som many negative stories around). Take each day as it comes and the walking. Fresh air and exercise (even if only a short walk) Do lift the spirits. You live in a lovely part of the country.
 
I read endlessly about the NHS falling apart but here in Bridport I can see a doctor the same day if I need to (I don't need to now but did in the beginning) and they are good doctors. The same with my rheumatologist in Poole. He specializes in my disease. On the health forums many people complain about their rheumatologists not knowing anything about their illness. I wonder why a young-ish doctor who was with the Pakistani military a decade ago would end up in Dorset specializing in a disease that affects older, white women!! But I am very grateful for him.

I've also been helped by a local osteopath who I see every 2 weeks. And, of course, my Steve is a saint and keeps better track of my medication that I do (even though I use the health app to remind me).

Yes, getting out for a walk really lifts the spirits. I wouldn't say I have a really positive attitude - that isn't in my nature. I am still plenty angry that this has happened. But as I start to feel better I am more positive.
 
Good to hear that all-in-all you are fine Pauline, that you are not having to deal with constant pain, and that you have good medical attention close at hand. I hope things will continue to improve for you, and I'm sure that you will find a way to return to travel to some extent. If you are anxious about Covid, maybe you should choose an opportunity when the infection rates are generally low, and just try to plan accordingly and with caution - the main thing being to get a whiff of travel again, as this is certainly important to you. Good luck and take care.
 
So good to hear from you, Pauline. I'm glad you are getting good medical attention and as for Steve... you are a lovely pair.
I haven't traveled much, at all, and not since Covid. Looking forward (sshhh) to a weekend trip away with my granddaughter in the near future.
May you continue to improve, get to Switzerland and maybe... who knows.
 
I'm so sorry! Hope you get relief and feel better quickly.

I empathize with the headaches. I had a bad one, every morning around 5am, for over two months (December -early February). I went to a headache specialist and my doctor sent me for a brain MRI. I have "hypnic" headaches. Do you drink any caffeine? It's a harmless thing to try, but having a shot of 70mg of caffeine (espresso for me) before bedtime, per the headache specialist's instructions, works for the hypnic. I'm prone to migraines and sinus headaches, but those are different. My brain MRI had abnormalities that aren't clinically significant, but that damage came from a lifetime of migraines, and now, hypertension, along with normal aging. All-in-all, I'm glad to have such a thorough health care team, though I feel like I go to the doctor all the time (just got home from a colonoscopy).
 
I have to apologise for being missing from the forums the past few months. I check them every day and boot off the spammers, but I have not been participating.

As I mentioned in my Switzerland trip report from September, I have been unwell. This has come as a shock to me because I am usually in good health suffering only from back problems which I can deal with. The NHS hasn’t figured out what is going on, but they’ve had some alarming suggestions. I’ve had many tests done. My main symptom was a blinding headache for 3 weeks (after we returned from Switzerland but I was not well for 3 weeks on the trip), then reduced for 2 weeks, then stopped a couple of days ago. I am starting to feel better and get my energy back. Hoping this was a virus or something but still doing tests.

It will probably take me a bit more time to come out of this and then my interest in travel should revive. I plan a newsletter for the new year. We need to drag people off Facebook and back to these forums! And I will get back to work on publishing the old SlowTrav trip reports.

Thanks to all of you for keeping things going.
Sounds like you're on the road to recovery. Looking forward, as you are, to you feeling better and getting back to travel and writing.
 
I empathize with the headaches.
The headaches were only at the start and lasted for 5 weeks. I’d never had headaches before. Once diagnosed the high dose of steroids stopped them and they never returned. GCA has clear symptoms but is rare so it took my doctor 4 weeks to figure it out.

When I was trying to figure out what was wrong I was at the doctors at least once a week, but now I only see the rheumatologist every 4 months. Still at the doctor monthly for blood tests.

Sorry to hear about your headaches but an espresso before bed sounds good to me!

Symptoms of GCA or Temporal Arteritis: temporal headache that appears suddenly and does not stop, jaw claudication (hurts to chew, can’t open mouth wide), fatigue, night sweats.

GCA can make you go blind if untreated or have a stroke. On the health forums there are woman who have lost sight in one eye. Treatment is steroids which have intense side effects, but you get off them eventually, usually after 2 years because the GCA kind of burns itself out. I won’t go blind now because it is being treated.

Only 1 case per 10,000 people over 50. My doctor had never seen it before but another doctor in the practice knew about it because his mother had it.

Occurs mostly in older woman - over 60, white, Northern European. Occurs more in Scandinavian countries. Brits have Viking blood from all those invasions so there is more of it here (my ancestry is British).

Cause? Genetic maybe, an old virus in the body maybe.

It’s all very interesting. Another complicated auto-immune disease. Nice to know that my body is doing this to itself.
 
Glad you are continuing to improve. Crossing fingers your Normandy trip ends up working out. What luck to find a doctor with knowledge about this rare condition. I'm still wearing my mask here too!
 
I read endlessly about the NHS falling apart but here in Bridport I can see a doctor the same day if I need to (I don't need to now but did in the beginning) and they are good doctors. The same with my rheumatologist in Poole. He specializes in my disease. On the health forums many people complain about their rheumatologists not knowing anything about their illness. I wonder why a young-ish doctor who was with the Pakistani military a decade ago would end up in Dorset specializing in a disease that affects older, white women!! But I am very grateful for him.

I've also been helped by a local osteopath who I see every 2 weeks. And, of course, my Steve is a saint and keeps better track of my medication that I do (even though I use the health app to remind me).

Yes, getting out for a walk really lifts the spirits. I wouldn't say I have a really positive attitude - that isn't in my nature. I am still plenty angry that this has happened. But as I start to feel better I am more positive.
Hi Pauline,

I’m so sorry that you have been having health problems. Wishing you ongoing improvements & effective treatments. I’m glad your walks lifts up your spirits. Seeing photos of your walks always makes me happy.
 
Pauline, so sorry to hear that you have been suffering from ill health. Hopefully you are now on the mend.. wishing you a speedy recovery!
 

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