Forum Participation

[PokeyMindy]

I am happy to say that I am officially getting better. My last blood tests were good. I had Temporal Arteritis, possibly caused by a virus. It took the doctor some trial and error to figure it out. I’ve been dealing with this since July. I think my tooth pain was related to this. I’ve not taken much medication in my life but for the next few months I will be, to keep this in check, and then he thinks it won’t come back. The headaches have been gone for two weeks and my energy is returning (because I am taking steroids!). I still have to take it easy and recover but we are both so happy that things are going well. I realise how lucky I’ve been with my health all these years.

I am even starting to think about where we might travel next year!

great news Pauline! I hope you continue to feel better and stronger in the next weeks. We've all got a lot of traveling to catch up on so feeling healthy is key!

 

[jan]

So glad you are on the mend.

 

[phirhon]

It is always a relief to get a diagnosis. I had not heard of this condition until my younger sister was diagnosed several years ago. Her GP suspected this when she went to him with severe jaw pain and he immediately prescribed steroids before referring her to a specialist. She was on medication for quite a while. Unfortunately for her this was just another ailment to add to along list of medical issues.
All the best for a speedy recovery.

 

[Pauline]

I had not heard of it before either. They also call it Giant Cell Arteritis. The doctor thinks that is what I had and I had most of the symptoms (jaw problems but not bulging veins in my temples) but I did not go to a specialist or have an MRI or biopsy. The doctor put me on a high dose of steroids and the next blood test was back to normal. The headaches stopped after 5 weeks, on their own, before I started the steroids, which I think is a good sign. They have not returned. I am tapering off the steroids now. I am still recovering - very tired, low energy most days, some insomnia from the steroids. I’m also seeing alternative health practitioners and taking some supplements. Once I get down to a low dose of steroids I think I will improve, which will be in a few weeks. Meanwhile Valerie sent me a book about hiking in Italy, in the Cilento where we were a few years ago, so I can read about hiking.

 

[Georgia & Zig]

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.

Oh no, I’ve not been on lately either. Hope you are feeling much better. Have you found out what caused the headache?

 

[Georgia & Zig]

Oh no, I’ve not been on lately either. Hope you are feeling much better. Have you found out what caused the headache?

I just read the other comments, so I’m happy to hear you are much better now.

 

[Pauline]

Today’s New York Times Magazine has an article about Giant Cell Arteritis (the thing I am dealing with). One of those “solving a medical mystery” articles. It was interesting to read about someone having many of the same symptoms that I had. It took my doctor 4 weeks to figure it out, but I didn’t have the most common symptom of pain in your temples. Mine seemed to start behind my ear on one side. But I had the headaches, the jaw problem (couldn’t open mouth much, hurt to chew), the scalp pain, the double vision (this started a year earlier).

The Pain Was Squeezing His Head Like an Octopus. What Was It? (Published 2021)

The diagnosis came from an unlikely source.

www.nytimes.com

I am still exhausted but no more headaches and I am tapering off the steroids.

The NHS is not in a good state here now with many local resources moved to vaccinating and hospitals overwhelmed by Covid cases and staff absences due to Omicron. The local osteopath that I was seeing (and her treatments really helped) had to cancel all appointments because she has Covid! I’d like to go to an acupuncturist but don’t want to see anyone during this omicron surge.

I am hoping that I had a mild case of this with headaches for “only” 5 weeks and they stopped on their own before I started taking steroids. Now I need to get my strength back in time to be back hiking this spring.

 

[milgreen2]

so glad you are feeling better, Pauline!

 

[Pauline]

This health stuff is still going on for me and I think I will be dealing with it for another year or two. I am getting used to it. The main side effect is fatigue. I am not in pain, the headaches stopped as soon as I started on steroids.

We cancelled our trip to the Cotswolds (would have been there now) because I was just too tired to deal with packing and it didn't seem worth it to only be able to hike for 2 or 3 hours a day and do nothing else.

We are out walking again doing shorter and easier walks than we used to do. I feel an improvement lately. The doctor is monitoring me with blood tests and watching the level of steroids I am taking. I had hoped to stop them by now but it wasn't as easy as I had hoped. If you decrease too quickly the inflammation comes back.

I've been reading about auto-immune diseases and it is all very interesting. So many different ones and they really don't know what causes them. Some articles relate them to the Epstein-Barr virus which caused Mono (which everyone had when I was at university, but I don't remember having it). They also say 90% of the population as the EBV. All the research into Long Covid may discover more about auto-immune disease.

So, I am making an effort to not complain, to not "why me", and to eat well, sleep well and get good exercise. I spend more time sitting out in the garden in the sun than usual, which is nice!

 

[artnbarb]

So sorry to hear that this is happening. Just doesn't seem fair. Best of everything to you both!

 

[PokeyMindy]

Pauline, so sorry you're dealing with these health issues, but you seem to be "dealing" in a positive outlook kind of way. At least you are listening to your body and doing what you can to get healthier....good nutrition, exercise and plenty of sleep. One day at a time!

 

[chachalaca]

How exhausting and frightening, Pauline. Take good care of yourself and sending you continued healing thoughts.

Love the idea of the forums becoming a beehive of activity again!

 

[Steve R.]

Sorry to hear about this so much later. I guess I should read more of the boards. All my best for a full recovery and resumption of travel.

 

[Pauline]

An update on me. I am still dealing with all this but am doing better. The only symptom I have is fatigue (no pain) and it is not that bad. I can’t do our summer 10+ mile walks but we do 3 - 5 mile walks frequently. I’m still on steroids and have side effects from them. I am “tapering off” the steroids but won’t be off them until next year if all goes well. I didn’t recover as quickly as I had hoped - thought I would be done with this by now. But I’m not.

I find it hard to accept that this has happened but am learning to deal with this new reality. I read a health forum for GCA (Giant Cell Arteritis) and others feel the same. Many were very fit (runners, bikers, hikers) and are not happy that they can’t do what they did before.

Interesting news yesterday that the actor Aston Kutcher announced that he had a rare form of vasculitis and was nearly blind and deaf from it, plus could not walk, for over a year but is now recovered. There are many types of vasculitis. It doesn’t sound like he has the type I have. They are all auto immune diseases that affect the arteries. And no one knows the cause.

Ashton Kutcher ‘lucky to be alive’ after autoimmune disease left him blind and deaf

Actor says he was diagnosed with vasculitis two years ago but has recovered and the ordeal made him strong

www.theguardian.com

We are doing our usual September trip to Switzerland, driving from the UK, as we did both summers of the pandemic. We were never the strongest of hikers but we will be doing easier hikes this year. More time sitting and enjoying the view I think.

I hope you are all having a good summer! It is way too hot and dry here in southwest England.

 

[jan]

So glad you are improving, Pauline.
Health issues abound!
I always try to think "what I meant to learn from this?" and often can't find the answer but I'm working on it.

 

[milgreen2]

thanks for the update, Pauline, and so glad to hear you are feeling/doing better!

 

[ItalophileNJ]

Thanks for he update, Pauline. Sorry your illness is lasting so long but things appear to be moving in the right direction for you.

In other news… a vegetarian, mostly vegan little casual restaurant recently opened in my building, how nice. “Flats”, salads, etc. So I’m picking up dinner from there in a little to help them stay in business.

 

[chachalaca]

Be kind to yourself as you recover and adjust to the new you.

 

[Georgia & Zig]

So happy you are getting better. We caught COVID in July in France and missed the Bastille day fireworks when we were in Lyon! We couldn’t get out of bed! I think we caught it from the crowd at either the Louvre or the Palace of Versailles! Zig had it worse than I did but my throat stayed sore for a couple of weeks. The really hot weather hit us when we were in Geneva. It was unbelievable. And no private apartments are air conditioned there so it was impossible to be in our Airbnb during the day and almost too hot to get any sleep at night. Our host brought us a large fan so that helped during the night. We survived by spending a whole day up in Montreaux. Beautiful walk along the clear, blue lake!

 

[PokeyMindy]

Good to hear you are feeling better and that you'll be able to go to Switzerland next month. Small hikes and just sitting and looking at the amazing views sounds pretty darn perfect to me! Hoping for your continued improvement. As someone somewhere once said, getting old is not for sissies!
(sorry to have missed you when I was in Chipping Campden)