GCA steroid update and travel

[Bluey-1]

We made our trips to Portugal and the family UK weekend, which was more challenging as I faced extended family for the first time and realised how limited I am in the activities I can do with my granddaughter, age two, who we haven’t seen as often as we’d like since she was born. It was all a struggle. The Portugal trip was fantastic. Our friends really understand and spoilt me, happy to go at my pace as their concern was about me. What a tonic. Diamond friends. Stretching exercises by and in the pool daily, short walks and a few early evening meals out. After a couple of days I was ‘me’ again. Travelling was stressful as I didn’t make full use of airport assistance on departure and struggled with exhaustion by the time I sat on the plane. Didn’t make that mistake again! Accepted it on arrival and departure at Faro. Wonderful. I took a couple of days to recover at my friend’s villa before I felt better and the last two days since arriving home when I’ve been drained. Today is much better. I notice I dip with anxiety prior to any event as described and need recovery time afterwards. Sleep was better in Portugal and the company of friends for my husband and myself was uplifting. Thanks for the Spoons Theory tip. I have sent that on to one group. This forum is very supportive and I am learning a lot about the long journey ahead from all your experiences. I am still on 20mg a day and have a telephone consultant appointment on the 19/10 so will see how I go. Learning to read your body is a challenge. Is the draining exhaustion due to emotional stress of activities or another flare? As I’m recovering after a day or so I’m learning not to panic about it. Whether that is the right tack is debatable. Strange disease!

[123-go]

Lovely to hear that your Portugal trip was a great success and that you made the decision to accept airport assistance after the first experience.

I would say that the exhaustion you are feeling now is a result of extra activity and also socialising which I love but wears me out. One gets carried away in the spirit of things and all the conversation and laughter takes it toll leaving me drained. I have to say that this effect has diminished for me as I've reached low doses of Pred but there was a time when even after a long telephone conversation I needed to lie down 😂😂.

You were very sensible to take time to rest on your return. Listening to your own body is the way to go. Continue to take it easy for a couple of days and resume your usual activitities gradually. Yes! You are right not to panic: that doesn't resolve anything. Being aware is the preferred option. 😀

[DorsetLady PMRGCAuk volunteer]

. "Learning to read your body is a challenge."..

yes is, but we all get there in the end... much like learning anything new at any time time in life.

Agree that you current feelings are a result of your holiday...which although is very enjoyable, it is a change to normal and travelling takes it out of anybody..at most ages, with or without an autoimmune illness.

Just rest up, remember how good it was, and don't panic...

[PMRpro Ambassador]

Almost certainly part and parcel of the autoimmune disorder underlying the symptoms. It's a bit like having permanent flu. Plus the "down" of being back to normal.

Glad you had a good trip - friends are often preferable to family!!!!

[SheffieldJane]

Perfect management. I am currently in Australia and facing the same struggles plus jet leg. Four lively grandchildren and outings. I beg a rest day then feel sad and miss them. One day at a time. Uncomfortable seating whilst out has been an issue. Tempted to up my dose for severe back pain. Not something I consider lightly.

[Telian in reply to SheffieldJane]

As you say Jane one day at a time. Before you know it you’ll be wound up because you’re heading home. Enjoy!

[montebello]

Yeah, well, my wife and i are helping our daughter after her c section. She has a 5 and 2 year old. My wife and i are in our mid 70s. Talk about exhausting! Love them all but..... can't wait to recupe. Take care.

[Bluey-1]

Thanks everyone for your supportive comments. It really is one day at a time Jane. After recovering from the travel, yesterday felt like a good one and I was taken out for lunch with friends but after a couple of hours I was exhausted. Poor sleep last night and good for nothing today. The unpredictability and emotional lability is so confusing with the steroids and the GCA. At times I feel like I’m in a glass box unable to break out, just watching the world go by. Last week I felt relatively normal and I know I have to hang on to those days but today…oh dear. The dragon, as Kate Gilbert describes it, has just whacked me down again even though I thought I was doing well with pacing. It’s so hard. It’s early days for me but I’m sick of being sick already. Patience was never my virtue and I’m learning it the hard way. I’m in awe of you all who have had so many years of the dreaded GCA. Thank god you’re here and understand.